another autismic day

I crack myself up!

2011-11-30T08:23:00.004-05:00

I just re-read the post of when I got Jenks (dog 2) That was damn funny!

Thing is, not much has changed. He is still insane! I think he's part rabbit, because he has so much energy he actually hops. He's filled out, and hasn't had an accident in our house since the begining. Thank God (deal breaker)

He is fantastic with Ben. Fletcher is not needy and probably a little full of himself. Jenks... we refere to as our junkyard dog, and quite frankly appreciative of everything.

Ben likes to have "Birthday parties" We get a small cake, put in the candles, sing to whomever we can think of (usually one of the dogs or a book character) wear hats, and have a grand ole time. Jenks is fine with the hats. haha. Fletcher has more class. The other night, Jenks was more then happy to oblige, until Fletcher couldn't take it, and snatched the hat right of his head.

Dog are funny as hell.

Ben. Ben is doing well. He's started to sing, which I think is progress. He sings, (not well) (get's that from me)

Favorite songs are Happy Birthday, Bob the builder, and twinkle twinkle. I enjoy each note and verse. He's begun to get homework. A letter he needs to trace (about 20 of them). An insight into his thinking, one day he didn't want to do it, so he drew a line through a whole section of letters. I told him we don't do that, and he responded with "Ahhh he's so cute" Player be playin! Can't blame him for trying. What else..... He's still sleeping in our bed. Between 11:30-1:30 the door alarm will go off (we have a sensor door bell that goes off when he leaves his room. the sensor is plugged in to our room, and has been a godsend! Why is it godsends are usually $19.95?) I can't say we mind. We've gotten used to it. The only unholy part!!!! That sucker GRINDS his teath. Wakes me up several times a night. Dentist says it's no problem, so I have to believe him, but talk about nails on a chalkboard!!!!!

We went to see his Dr at CHOP a couple weeks back. Like clock work we were going every 6 months. I may have said it before, but I wasnt' sure why. We'd have a conversation, they'd check his weight etc, and that would be it. This time the Dr asked, "what can I do to improve your lives?" Well, if she doesn't have a magic wand, or a crystal ball, really nothing I could think of. Now we'll only go 1x a yeaer.

We've gotten Ben into an excellent summer camp throught the JCC. It's called open hearts open doors (I think) Children are mainstreemed with all campers. They are given an advocate (one on one) and particpate in everything typical campers do. They have swim lessons and free swim each day, a lake with one of those tramplines, a water slide, etc. He'll go there instead of the extended year school. When I told his social worker, she let us know there were several children that go to the camp, and therapies are offered during the summer. The bus would pick Ben up, Bring him to school for OT and speach, and then he would be bussed to camp. Best of both worlds.

Me. I have an appointment tomorow at University of PA to get a second opinion for that whole MS thing. wheeeee!!!! It took 6 months to get the appt, and my guess is, another waste of time, It is what it is, and be done with it. I do feel good. It's funny because I think I must have had it for a while and never known. I'm pretty old for it to be a new thing, but now I notice things. I get tired, but will snap out of it. I feel dizzy sometimes. All and all though, really no complaints. God willing, I'll be 89 and shooting that stupic needle in me each day still saying "doing well!"

I have no choice. As all parents of kids with special needs know, I can't die. Ever.

Till next time!

a dirty little secret

2011-09-15T10:16:00.004-04:00

I watched a U-Tube video today that had me in tears.

http://www.youtube.com/watch?v=1iSlok6muY0&feature=player_embedded

Think before you speak. So easy to say, so easy to forget. I watched it, and then decided to forward it to others. "Others" consisted of quite a diverse group. Of course there was my husband, but along with him were several co-workers. Some who may get why I would send it, others who probably thought.. "What the Hell?"
I even had a reply of "Why is the queen of sarcasm suddenly getting so sincere and sentimental?" The dirty secret is..... I was torn about sending it out. It was emotional to me, and choosing who to send it to... little do they know, but they were all chosen for a reason. Whether it was because I could see them using the video to teach someone else, they had small children they could teach, or whether it was because I had heard them use the word in the past.... all were chosen for a reason. I almost just kept it to myself and didn't want to use it, deal with it, talk about it..... Sometimes it's hard
I sent it to Bens teacher, to my old director who's wife is a teacher, It went to three states.
Is the idea of dropping the "R" word new? No. Lot's of movements out there, sign up and pledge, etc. but this teenager crying over the ideas others have of her brother was heartbreaking.

I see the world has changed since I was a teenager. I'm 44 now, and when I was in high school there were no inter-racial couples. I remember 1 gay classmate in a high school of thousands.
Today.... these things don't even seem to register to teens. It's so normal (at least in my area) There are several inter-racial couples, and I work with many teens, with a percentage being gay. None of this decides whether they are accepted. They don't seem to need to hide it anymore. And of course I think thank god. I can't imagine the gay classmates I had who were too ashamed of themselves to live a life, (these are my beliefs) that they were born to live. Life is so hard, and to have to fake huge chunks of your life.... exhausting.
Anyway, my hope is that people continue accepting differences. Where interacting and accepting someone that may have been considered a dork or "retarded" 25 years ago, there continues to be a push toward individuality, whatever that may be.
There will always be shitty people out there. That's a community, but at Ben's school I see kids from 6-12 who enjoy Ben, make an effort with Ben, and they'll never know how grateful to them I am.

mmmmmm..... dog......

2011-08-31T13:32:00.004-04:00

We got our dog a dog. Stupid huh?
I think our dog was even saying he didn't want it. Either way, my husband (yeah you know the type... I want it, I want it, but I'll not walk it or clean up after it), decides Fletcher needs a pal. It is true that we are not the jogger, biker, get out there and exercise type, but then again, neither is Fletcher. Guy likes nothing better than to sit with his face pressed up against the AC vent. He looks like he has asthema, when in fact all he has is "fat-ass" I think it's contagious, because with the exception of Ben, everyone in our family has it.
Anyhoo... we go to the pound and ask for a medium size dog. Well... Jenks is not what I would consider medium. He's 10 months old and 50 lbs. Can I tell you he's as skinny as sh*t! Vet expects him to put on another 20lbs. 70lb dog does not = medium. When we got him home he was coughing. We thought Kennel Cough, which will right itself, but after 2 nights of hacking we take him to the vet. While we're there Brent and I are congradulating ourselves on this well behaved dog we got. (1/2 price by the way... the shelter was having a sale)375.00 dollars later, 2 antibiotics and a cough medicine.... wtf! Well.... we did not get ourselves a calm pet. The thing was sick. 36 hours into antibiotics and he went nuts!!!!
He's getting better. We've had him snap at Fletcher over a bone (I threw it in the trash), peed on our floor.... Drug his ass out every hour on the hour to teach him the right place to do it...What was I thinking?
Everday, I brace myself to walk in the door, knowing the two nuts waiting behind the door are going to come at me fast. mmmmmm you know you're home when you can smell dog!

Hurricanes.... phhttttt!

2011-08-26T08:22:00.003-04:00

Live with a whirling dervish and you wonder what all the fuss is about? I have to say, I live in the Phila region, and the newscasters are constantly trying to get ratings with the weather. Last weekend ( I couldn't make this sh*t up) John Beloris, the ultimate ass is saying he's never seen anything like this on his radar, in all his years, blah blah blah. It consisted of a 2 hour thunderstorm. Nothing exciting, nothing momentous, just a thunderstorm.
Now this week... Irene. Which happens to be my mothers name, and yes... she can be quite..... welll, I'll leave that for another day.
Anyhoo... my husband and I are pretty much poo pooing it. You know this will be when we're swept away, or all of our 6 trees come tumbling down. We thought about going to the supermarket, but if we lose power, why would we want to have stocked up on food? boring! at least that's the hope.
Yesterday was my birthday. Don't you wish at least once a week you could go back to when you were 6 and just do it all over. That makes me sound unhappy, which I'm not. But... there are the few things I would change.
I turned 44. Where the hell did the time go. When I think about being a teenage (which I'd like to think I still act like) we're talking 26 years ago I was 18. DAMN!!!! Yesterday at work, I slipped on a step. I didn't fall, but I scraped my ankle on the step, and bruised my arm where I caught myself. To top that off, I kid you not, but I was a little stiff. FROM SLIPPING ON A STEP. If my birthday didn't make me feel old, that sure did!!!

School starts in one week. I think we're all ready to get back into the swing of things. I know I've voiced my dissatisfaction with Ben's day care. I guess when you're son is in a class of 5 with 4 aides and a teacher, there's little out there that compares. Here's to this being Ben's break out year. I think he's going to have one. maybe not this year, but I do know they'll come the time when he's verbal. He's physically able to say and do everything, and when he's engaged, or he wants something, the words and ideas flow free. He's impressive. I just know they'll come the day when he sees the reward for communication. To say the words, Ben! please be quiet! Oh, how I long for that! And I say that figuring one day, I'll say be careful for what you wish for!

Well, to all those on the East Coast.... Hold on tight.... We may be in for a wild ride..... And if so, can I stay at your house, because I didn't prepare in the slightest...lol

Just been lazy

2011-07-28T07:25:00.002-04:00

It has been like forever!
I'm not good at this blogging thing. I can type like the devil, but, it really seems to take some initiative to open up the page and put down the thoughts.
I have my bloggers I look at daily, and I'll tell ya, I really respect the fact they can get out a funny, entertaining, etc thought daily. I just don't have it in me. It's a shame too, cause my Ben is one entertaining guy. Some of his "routines" are things only a mother could love...lol

Ben:
Ben is currently in his extended school year program. It lasts for 5 weeks and runs Mon-Thurs 9-2. His regular school teacher teaches it, and the aide that he was attached to at his after school program is working with him as well. It's a blessing to have people who are invested in Ben work with him. From there he goes to a day care. I'm not thrilled with the day care. I don't even blame them. I think they try, but..... I went to pick Ben up one day this summer, and he had pinched another child. He actually acts out a lot there. They're not sure if it's the amount of activity, noise, etc, or they just don't pick up on his cues, but..... he's a little jack the ripper there.
Well, when I asked the "teacher" what she had done/said to Ben after he had put his hands on another child, she said she told the child he didn't know better and to just leave him alone. huh.....The last thing you want is the other child to see him has a blathering idiot who is voilent. Nor do I want the other children to just ignore Ben and leave him even more alone. Yet, I looked into this young girls face and could see how she was proudly reltaing her solution, and thought she had solved everything. Exhausting.
Ben will never go there again. He needs to be in a special needs camp. Again, we're in a metro area, with several to choose from. We have a JCC here with an open arms camp. Children with special needs are given a one on one and do all the same activities as the main stream kids. These one on ones are teachers or college students, so they're very good at getting them active. There's a college close by with students in teaching courses who have the same premise. Picture Scarlett O'Hara beating the ground, and there I am. As god is my witness, he'll never sit in this day care again....wahhhh.
Aside from that, I've regained the pole position of his affection. I slice of time went by when the world revolved around Daddy. But now.... Here's Mommy! Petty, but I like it this way!!!!!\
HAAA!
Me -
I feel pretty good. I'm off the steroid (15 lbs later) Between the steriod and quitting smoking, my waistline took a BEATING this summer. I'm going to try and work on that, I'm taking a shot everyday, and my nuerologist hopes we never meet again. I do as well.

can't comment

2011-06-21T12:04:00.003-04:00

I haven't been able to comment on my blog, or anyone else's as well. Don't know if it's me, or if it's the site, but I tend to blame others so..... Damn this internet world.
I completed my 3 days of soli-medorol infusion. It's 1000 mg of steriod iv'd into you. This was done at home. Can you even believe it? A nurse came out to the house, put a port in my arm (which was FANTASTIC!) not one ounce of discomfort the whole time. He then taught Brent how to hook up the bags of IV and to flush the line 2x a day. Brent went at it like a pro. I can't believe it. I don't know if I would have been able to do it. I get all shaky etc.
I had no side effects with the exception of a bad taste when drinking liquids. We were able to go about our buisness all weekend long, and I even slept. I had read comments by others who had had the treatment and there were several bad experiences. I was prepared for the worst, but thankfully, didn't have it.
This morning I began a regimine of 20mg of prednisone for 90 days. This is alot, and due to my having active lesions. Why 1000 mg didn't effect me, but this pill has me doing jumping jacks I don't know. It's not too bad though. My doc said some people can tolerate it, others can't. If I find myself having a tough time, he'll take me off of it. I plan on giving 120% though.
That's me.
Then there's the real star of my show... Benjamin.
Ben's last day of school was yesterday. No more kindergarten..... whhaaahhh! Now I feel old. (Which I am!)
He'll go to day care, which I'm sure I've said in the past in nothing more then a holding pen for kids. Don't think he really gets very much out of it at all. There tends to be a turnover, and the help is not as trained as I would like. BUT..
Ben doesn't mind going. He does get out of the car happily which means the world to us. They do let him totally slack there, but summer is called vacation time.... right????
Ben will start his extended school year July 5th and take him throught the first week of August. Then it's just a few more weeks of slacking till we're right back in Sept again. Crazy how fast the time goes.
I've been seeing improvements in Ben daily. He has the best personallity. All of his aids at school and daycare tell me Ben's a favorite. When there's subs, or new people they gravitate to him. When he goes to his after school program the typical kids notice everything about him. And it's pretty much all postive. (At least that's what the steriods are telling me.... lol)
Thanks to all who sent well wishes. I can't tell you how much I appreciate it.
Any advise? Please feel free. I know we're all different... but... it helps!

so that's how it feels to be diagnosed...

2011-06-17T08:46:00.003-04:00

I just was diagnosed with MS.
I swear I still can't believe it. I've decided the route for me to take is a factual business type road. I've read up on MS, treatments, prognosis's, etc.
None of these things make me freakin happy. Or devestate me either. Yes, you can have it both ways.
History: I felt numb on the left side of my body. From mid trunk down my leg. It was as if someone drew an invisable line around me. I work at a retirement community in HR. After conducting an interview for a C.N.A, I was talking to our Assistant Director of Nursing, and mentioned this oddity. I thought it may be a pinched nerve, or just that I was sitting wrong at my desk. Nothing to even begin worrying about. She on the other hand had STROKE going on in her mind. She didnt' voice that so not to scare me, but strongly suggested I call my Dr immediately. I did. The medical assistant who answered the phone declined to give me an appointment instead instructing me to go to the ER immediately. That's when he said it sounds like a stroke.
I went to the ER close to my home and was taken back immediately. Trust me, I was responsive, clear, functional, etc. The one thing that got me seen was as I was explaining the numbness, beneath my left eye became numb as well.
The ER doc decided to run the gamut of tests. CAT scans, MRI, X-Rays. After a bit of time, I did let them know I had to leave by 5:15 to pick up Ben from daycare. I left with a perscription for Percocet (I have no pain, but... what the hell!) and the suggestion to see an orthopedist for a suspected pinched nerve.
I was home with Ben for about a 1/2 hour when the ER doc called me to tell me the nueroligist had looked at my MRI and suspected MS. My reaction - Get the fuck out here. This does not happen to me or anyone I know. False alarm. Not worried. He wanted me to see a nueroligist right away. He's actually friends with my primary and had called him at home. He also got my docs' cell phone # for me to call first thing the next day.
Well..... I got to tell you, he was right. Is that what happened? no. but he was right.
My primary and I decided what's the big hurry? If I've had this, what's a few days going to matter. It does. but... live and learn.
I went to see my nueroligst. He's an old guy. Thinks he's funny too. He reviewed my MRI, tested my reflex's and decided I have MS. This news was delivered in a way I didnt' get. I thought he had given my a clean bill of health. When I asked him why he wanted me to get additional MRI's he said because you have MS. With a smile. My answer was "wait, what?"
Anyhoo.... I went lastweek, two different days, to get cervical and thorasic MRI's. as well as an updated Brain MRI with contrast. I had made an appt with my nuero for Wed, forgetting that I conduct trainings from 8:30-3:30. I called to reschedule. They gave me an appt for June 30th. That was cool with me. I had that appt for approx 20 minutes before the Dr's office was calling saying... a no... we need you in here. Sound silly? I then asked for a phone conference. Let's just get this over with. a no... you need to come in. Now I don't know about you, but at this point, I'm pretty sure this isn't going to be good.
Well I researched what I could, informed myself of the basics and felt pretty prepared. There are several types of MS. Some worse then others. I guess I'll eventually progress to those types, but for right now I have your basic MS.
My Doc told me I had developed new lesions in my brain since my original MRI three weeks ago. His exact words are "You're bad!" I said, "Oh, because I tried to postpone my appt?". His answer, and remember.... ALWAYS with a smile. "No. Did you read the results of your MRI? You're bad". Now again. I try to limit my profanity, but.... what the fuck! Is that your idea of bedside manner. Yet.... it works for me. I asked him something in a fog, and his answer was, "We'll fix it" well alrighty then.
The fix is tough. Starting tomorow, I'll have a one hour infusion for three days of high levels of steriods. A nurse will come out to the house, set me up, and then Sunday and Monday, they're expecting me to do it on my own. Great......
After that, I'll be on oral steriods for three months. Also, I've been perscribed an injectible med for the rest of my life. The cost is over 45,000 per year so my husband damn well better keep his job with his great benefits! otherwise... screwed.
I went on the web to research the med. There weren't any negative comments with the exception of the price. The usual side effects are site irritation. When you inject it hurts/stings for 5-15 minutes, and after a while it will leave indentations in your injection site. I'm 44, and have officially given up my bikini bod. That part I'll live with.
So.... MS, daily injectibles, unsure future.....
What else you got for me?

Beautiful!

2011-05-26T11:37:00.003-04:00

I am a cheap mom! I'm no longer ashamed of this, and have come full circle from throwing the money around (which we never had), to not going anywhere unless we have a coupon.
So...
With Ben being autistic, there are tons of opportunities to do things. Carnivals, the zoo, the movies One is going to the Discovery Museum 4x a year on selected Sunday nights for an open arms evening. They are great. You never have to worry about explaining your child, and if he steals the ball from another kid, the parents know you're on it.
Ben enjoyed a new activity this go around. Rock climbing. He had tried it with no success the last time we were there, but this time... a regular mountain goat. His limited ability at communication be damned, he let us know he was proud. He stood up on these faux rocks stating... beautiful. great, good job. All of which I was to repeat with fervor! And I was happy to do it! He really is a funny kid.
We bought him new sneakers a couple of weeks ago. I tell him how fast he runs and how high he jumps with his new shoes. He's constantly looking at them when he runs and impressing himself. Too Damn Cute!!!!
Tomorow is field day at Bens school. I will be there from 9-3 assisting Ben through obstacle courses, and god only knows what. I hope I don't get too competative... lol Of course the whole time I expect Ben to be obbsessing on we'll get McDonalds after. Anytime we do ANYTHING, he thinks McDonalds will follow. Does that make me a bad mom? I just can't so no to that squishy face of his.... I cook most of the week... wahhhh. oh well.

how do I explain this?

2011-05-17T15:49:00.003-04:00

I had a co-worker ask me about Ben Monday. She wanted to know details. Can he talk, is he loving, what's his school like?
She was asking expecting me to explain Ben, and then she could understand autism. She doesn't know anyone with it or who has an autistic child. I told her about Ben, and then explained, she still doesn't know autism. It's so funny to think, if a child has diabetes and is in the middle of an episode, give them orange juice. A child with autism having an episode??? who knows? all children with autism are so different. There really is no blanket answers. In Ben's class, there is 5 very individual children. In the gym class, 4 completely different kids. I'm not just talking personalities, but abilities, behaviors, everything.
We go to the Dr and look for some answers, but seriously? What's there to say? What works for Ben could be completely traumatizing to another child with autism. Unless the Dr lives with us, instead of seeing him twice a year for 1/2 and hour, what do they have to offer? We go to Phildelphia's Children's hospital. I don't know why. I keep asking my husband. We had to wait over a year for the appt. and they really haven't offered us much. Ben doesn't need meds (Thank God!) He sleeps for us, he's not aggressive, just a happy little guy.
What are we hoping for? I really don't know.
What do we expect? I have no idea
How do you explain your child, and autism to someone else, when you really don't quite get it yourself?

What's wrong with you!?

2011-04-22T08:26:00.002-04:00

Ben has a thing..... We all do, but Ben's can be annoying. Lately he's enjoying flushing things down the toilet. This isn't exactly a new thing. He had a spin at it about a year ago. We replaced the toilet, bought a lock (much to my mother and grandmothers chargin) and eventually "it" went away.
Ben became much better at using the potty on his own (provided the light was on) and we didn't want to impede this. The lock went away.
Well, each day when Ben comes home from school, his first words are... "I'd like to take a shower please." Strips himself down to his socks, and heads on in.
This week, we've lost two bars of soap to flushing. I talk very seriously to him... No Flushing!
Well.... he got me. I heard a "disturbance" in the bathroom, and caught him flashing thru the bathroom to throw in my hair conditioner and a wash rag. Damn! I run like the wind and dive with both hands into the toilet. Sweet! Now I need a shower.... At that point, I could see something had made it's way down. Ben runs to the bedroom and starts asking to watch his Barney movie. I stand in the doorway with my hands on my hips and yell "What is wrong with you?". Takes me about 6.5 seconds to recall exactly what that is, and I snort at myself. The thing is... and I must know... Does he realize he's misbehaving, and if so, does he realize that there are consequenses? Does autism give you a free ride? What are appropriate punishments? What are the expectations I should have? Is the sheer delight of watching miscellanious items circle the bowl supercede the constant reminders of "don't flush your friends"? I must know, because if given the go ahead, I will ........oh I'll think of something.....
My husband and I are not on speaking terms. He gets home, and I let him know about the "incident". Dumb ass goes in and flushes. HA! I hear him heading downstairs for the wet vac. Comes up stairs, get the toilet water up. Yells out "Where's my tools" You mean the ones you've left in the den for the last 5 months? I drug them downstairs over the weekend in preperation for company. You know you're f*n family. Goes back downstairs with a "think your funny..." To be honest, at that point, I was enjoying myself. Then he takes the toilet off (2x in the last month) and tries getting the object out. After 1/2 hour he gives up and buys a new toilet. Frankly, for 85 bucks, I would have rather seen him try a little harder. Quitter.
Now... I do get that some may think, perhaps, that I should be watching him in the shower to prevent these incidents. Well.... that may be. Thing is, this is the time I've been using to get dinner ready. and I do check frequently. When I'm checking, he's sitting in the shower, soaping himslef up, or playing with his pirate ship... he's a sneaky little turd.
Yesterday during his shower, I put the trash can and plunger on top of the toilet seat figuring if he tries to get in, I'd have a heads up. I went to check on him and he's a stealth sucker. He was flushing as I opened the door. Don't know what or if it was, but as of today.. we can still flush.

Giving Thanks

2011-04-12T08:38:00.003-04:00

A lot of the blogs I read are written by religious women. I'm not, and it wasn't planned, it just happened. One of the blogs has weekly been giving thanks for things in her life. I decided, let me do the same. Think of 10 things that are good with my life, when so often I only see the dark side. 1. Ben's belly laughs - they're contagious 2. My mother - always on my side, and has learned when it's better to say nothing. 3. My own sense of humor - for some reason, I make myself laugh 4. Quit smoking - it's been three weeks, and I'm feeling pretty good about it 5. Fletcher - Our Golden Retriever. The village idiot, but still good for a laugh. 6. My job - How nice is it, to go to a job and not mind, even get some enjoyment out of it. 7. Spring - My commute to work is picturesque. Spring is utterly gorgous in my neck of the woods. 8. Ben's improvements - Ben is getting better at letting me know what it is he wants. He's even getting a sense of humor himself, and it's been great to be able to share it with him. 9. Food and Shelter - some take it for granted, others may say I've earned it. I don't want to take it for granted though. 10. Living in a country where I can feel safe. You look at the news, listen to the radio, and wonder how people live from one day to the next. We don't know how fortunate we are.

IEP's a sure sign of spring

2011-04-07T12:42:00.002-04:00

If you read any other autism blogs, it seems obvious that spring begets flowers, showers, and IEP's. Today was Bens. These teachers are crafty!!! They start off raving about how cute and sweet your child is, and BAM... you're sucked in. Just kidding. They all did say it, but of course I know it's true, so I could not blame them. Ben is doing well. He's opening up more and more each day. They see it at school, and we see it at home. Ben is a very with it kid. You hear of many autistic children who appear to be in their own world. Ben if very much in the here and now. Even when it appears he's paying you no mind, don't kid yourself. Whisper Chucky Cheese, and you'll know! The goals for next year are pretty high. They're looking for him to be able to have age appropriate converstaion.....hmmm..... well, I guess that's our goal, so let's have at it. He'll be writing his first and last name (capital's). I will supply dunkin donuts for a year if this goal is reached. I'll be so proud, I'll pop. Asking the "w" questions. I know they're the hardest, so I asked which one they were starting with. What. Can I get a vowel? I then asked "Can you give me an example of a what question" duh... All in all it was a positive meeting. On another note..... We get to the school, and we're sitting on a bench outside of the principal's office. Down the hall comes a woman (aide) with a child who is on the spectrum. (Gaydar has nothing on us parents) The child looks happy (around 7) next thing, he tries to jerk away (much like Ben will do when he gets something in his mind) from "this woman" She jerks his arm, and starts saying in a nasty voice "you're not getting water. What? you want a reward for trying to get away!?" "you'll need to earn your reward" And at that point he's crying. Are you %&*#$ kidding me? After our meeting, I ask to speak to the psycologist in the hall. I told her what had happened, and if this had been my child, she probably wouldn't realize how unhappy I would have been. That Ben would have jerked if he had wanted something... hello!!! Autism.... not great at communicating their needs.... It was a situation that sits on a border. Was there abuse.... I can't pin it.... She jerked his arm, but not enough to hurt him physically. She spoke in what I would consider a intimidating voice, but didn't threaten him.....but there also wasn't that environment of caring, making a child feel loved....I hate people. I work in a retirement community, and an assited living facility very close by just had a horrible case of abuse yesterday. People need to stand up and say something when something looks wrong. There are 4 people who are going to be arrested for abusing a 78 yr old woman with alzheimers. Did no one see what was going on? People! Speak up! That could be your child or grandmother.

Sooo Polite

2011-03-11T11:16:00.002-05:00

So what's new, what's been happening? Absolutely nothing.
In my younger years, I was quite the thrill seaker. I could not stay in the house for fear I was missing something.
These days... I get home from work, shut the door, and that's it. I live in a 60's era environment. My husband walks thru the door at 7:10, and I am putting the dinner on the table. Timed.... My kids tell me there's something wrong with me (you know I agree!), butI tell them, they need to look for a wife who will do the same (Good luck suckers!)
Our excitement has been rollerskating, swimming, and walks in the woods. Sound like I'm filling out a personals ad. The beauty is, we found the rink in our neighboorhood, it only costs $7.00, and Brent and I can walk Ben around the rink without having to put on skates. He seems to enjoy it, and is doing as well as any of the "typical" kids we see. He'll have his moments of adventourous and drop our hands. We're so proud, and the smile on his face says he is too. Swimming... same as ever. He's a flipping, twirling dervish, and Brent and I are like to toads. We sit there with nothing but our heads sticking out of the water. It could not be described as any form of exercise whatsoever for us, but boy, does Ben sleep those nights.
Walks in the woods are my idea. The hard part is getting on your shoes and out the door. Once we do, we completely enjoy it. We bring the dog, who has this strange ass habit of not going to the bathroom anywhere but our yard. Thanks for that! Ben throws rocks in the water, climbs a tree, and still rides in his coach. He would never walk that far (I think), and has no issue with climbing in and being pushed. The fact that he'll be six soon.... details...
Additionally, he's learned to be quite polite when asking for something. The old "WANT MILK!" has been replaced with "I'd like milk please." how nice. The old "TUBBY!" has now been replaced with "I'd like to take a bath in the tub please". Now some may think that this is additional learned language, etc. I know he's just figured out how to wrap us even tighter around that little finger of his. He's so freaking adorable, the words no would seem profane! Remember he's often asking for milk at 4am, while he sleeps smack dab between Brent and I, for the last 9 months......romance? I swear I don't remember what the word is. I've decided tht Brent and I could be brother and sister, and nothing much would change... but that's a rant I'll go on another day.
Now with it being Friday, and I have no forseeable plans, I guess we'll be skating, swimming, and doing Ben's bidding for another wonderful weekend. I hope at least!

what if they're wrong

2011-02-04T22:11:00.003-05:00

you know that famous saying "God only gives you what you can handle"....
What if they're wrong? Do you ever have days where you're sure you just can't handle it? Those days seem like they're closing in. I find myself listening to co-workers talk about their lazy weekends and their self-centered times, and I know.... I'm not going to get a turn, I'll never have that light at the end of the tunnel,where I get to worry about me. and all I keep thinking is "holy sht

what if they're wrong?

2011-02-04T22:10:00.001-05:00

I'm a thief

2011-02-01T09:01:00.002-05:00

http://welcometomyplanet4.blogspot.com/2011/01/swallowed.html

I'm a theif. I don't have the words, just the emotion. I read posts, and literally sit in my office (private, thank god) with tears coming down my eyes. Sometimes it's too much. I have to go in the bathroom (again private) and splash water on my face. Take a minute to breath. Let it go.
If I were an animal, I'd be an ostrich. I'm constantly putting my face in the sand. If I can't see it, it won't hurt me.
In our home, we're normal. Ben's this remarkably happy guy, who is smart, engaged, and loving. We totally "get him"
Step outside, and we know he's smart and engaged....others..not so much.
We too get the diverted gazes. the waitress who just keeps talking over his babbeling. Now that Ben's 5+, we don't get the isn't he adorable so much anymore. He too is fading in the outside world. He too is the one who is carefully overlooked. I've honestly seen parents remove their children from the pool, or play area because you can see the visable panick that their young child will vocalize a question or comment on Ben and his "unusual" behavior. I don't hold it against them . I understand. That was me.
Thanks to those who can articulate the right thiing to do though. I'll never look away, or walk away again.

He wears it on his sleave.

2011-01-17T08:44:00.002-05:00

I'm talking about my husband Brent. If I were talking about Ben, it would pretty much be ketchup he wears on his sleave, but Brent... It's autism.
Brent is a warrior in his own way. He's a big guy, who wears an autism ribbon we got from the Phila. Zoo on autism day. He wears it in work, and anywear we go out. I think he thinks it has magic power. So far, we've never had to deal with a single public problem with anyone. That, or it's like a lions growl warning anyone who thinks about making a comment about Ben being loud, or moving, or just being his little autistic self. Fair warning.
I was reading Welcome to my Planet, and saw she contributes to a different site. Autism Sucks. Well... that's true, so I checked it out. While there, one of there sponsers had the Autism t-shirts etc.
http://www.fibers.com/shop/autism

I bought one for Brent (2XL), it came Saturday. As much of an old man he is some days, let a package come in the mail and he's like a 3 year old.

I being the permissive parent that I am (yes... I might as well be Brents mother as well as his wife) I let him open it up. Thrilled, probably doesn't cover it. A tee shirt that costs 30 bucks is not like me at all. I'm that lady that doesn't go out to eat without being able to say to the waiter/waitress "I have a coupon", doesn't typically splurge, but it was well worth it. There he is like a child again, asking permission to wear it to work. Dude!!! If you wear it, and it doesn't sit in your drawer, then it was worth every penny. Do what you want!!!

Now that's him. Me, I'm a little different. I'm only just starting to come around to being open about Ben. I'll now say it when I'm having random conversations about day care or christmas. Being able to say, Ben doesn't say much, but he let's us know what he likes/wants. I'll get that confused look, and then I'll say he's autistic... didn't you know? When of course I know they wouldn't have. Baby steps. I know I've said it before, it's not embarresment, it's not shame, it just the chance of pity, or god forbid the stupid remark. It's even the fear of someone asking me "What is that" I would have a tough time explaining all that it is.

Happy Birthday Big guy, and if you're good, maybe I'll get you a travel mug next!

I have to tip my hat

2011-01-11T10:51:00.002-05:00

I have about 20 blogs I read daily. Each day I start the computer, it's email first, and then straight to my favorites tab to read what's going on in "their/your" world. Most blogs I read have pretty daily updates. Now and again, and a day is skipped, but that's ok, I just move on. I used to read a different kind of blog. They were very heart wrenching and moving. So much so that they began to effect me.
Then, I came across a couple of autism blogs and enjoyed/related/could have written them myslef. I'm hooked. Some are heart wrenching, many move me, but I swear the power of humor is a deep well in this community!!! I laugh my ass off, when I'm sure much of this could make a weaker man cry. How does cleaning up a strategically placed shit = humor? I don't know, but thank god for it.
So, why is it it's so hard for me to write? God knows I can talk. I like to even think of myself as entertaining..... whatever! But... to sit and put it down? Tough. So I tip my hat to those who can. This blogging thing is great. It's hard to feel like your out there alone when so many artfully write exactly what your thinking.
So Thank you!

It's the holiday season...

2010-12-29T09:09:00.002-05:00

Happy Holiday's!

I'm just starting to allow myself to decompress. What a busy time its been.

Of course the fact I do it to myself doesn't help, but... I have to be me.

Let's see.

The Saturday before Christmas I baked my Christmas cookies. For all the baking and cooking I do, you'd probably think I enjoy time in the kitchen. WRONG! I hate it. I do it because it's a tradition, they're enjoyed by friends and family, and I have for Ben alone 15 people who care for him on a daily basis. I tin up cookies for all and give a WaWa gift certificate. So.. back to the cookies. I baked about 500. Durint this time, I also shopped for my husbands family gifts, and attempted to clean the house for the Hanukah party I was hosting on Sunday. I decided if Christmas had cookies, Hanukah should have a jewish apple cake, and so I baked one of them too. (crack head). I made my infamous (I should be humble, but it's just that good) matza ball soup. The time was definately interesting. It was the first time in over a year that his mother had been in my house. (see post 10/09/09). I can't stand to look at her. Did this holiday season improve that thought. No. She bought Ben two cheap ass gifts. Now that I don't have issue with. I can see her thinking, "Oh, they invite me to a party where gifts are given, screw them." Valid. no problem. The thing is... I hear her talking to her other two grandchildren, telling them "You know you got your gifts already, so I didn't bring you anything" Huh.... Hanukah had been in the begining of December, so I guess she made sure to get them something, but Ben could kiss her ass. HATE HER!!!!!! Have no use for her!!!! Hopes she finds herself miles away in a foreign country missing a passport.... falalala...lalalala. Back to the season.

Tuesday was Ben's school party. It was the one thing that I truly was stressed over. Isn't that sick? I had myself in knots over treats and activities for 5 children who may or may not be interested. who may or may not understand the fuss. and yet....

I baked cupcakes on monday (that's right... rub in the 3rd day of baking) and did the decorate your own cupcake thing again. Had fruit, juice, etc. The party was scheduled for two hours. (That's a long friggin time!) I arrive at the school loaded down! I'm carrying cupcakes, juice, water, cookies, activities, decorations. I could barely hold it. I pull into the parking lot at 1:02 - I hate being even that late, jump out of the car... and then it happens. Fire Drill. Are you kidding me? Anywho, that was the only fly in the ointment. I finally get to the class (which feels like 6 city blocks away). The kids see me, and to the adults amusement, immediately sit down for snack. Isn't that cute! I must look like the cupcake lady.

My shopping was completed on Tuesday morning and Thursday morning. Wrapping done friday, and Christmas morning was wonderful.

Ben recieved a set of drums. He walked out of our bedroom (yeah, he's back sleeping there again) and stopped dead in his tracks. He opened gifts, and was happy. Along with the drums he got a keyboard. The day was spent playing with toys, and telling us he's "making music"

Hope your days were full of fun, and family.

Am I "over-autisming"?

2010-12-10T14:43:00.003-05:00

Yeah, I know it's not a word.
We're getting busy. Much of what we're doing revolves around Bens autism. No, I'm not talking therapy's (Though god knows I should be).
We've just joined a sports group at little sport. They have an autism group that has a coach and a special ed teacher. We missed the first week, but they let us join for the remaining 5 sessions. there are only three other boys in the group, but that would probably be a great start. Ben's an active guy, so it seems like a winner..
We just bought our tickets to Sahara Sams' water park special needs night. Next Friday we'll swim, slide, and just be festive with I hope many other families. That and not lose our suits on the water cannon. (Ok Brent could lose his suit, and give me years of laughs, stories, and chuckles... but not me!)
Saturday night is open arms at the YMCA. Ben loves that pool (though brent and I are spoiled with the JCC keeping their pool at 88 degrees) This 78 degree pool is killing us!!! We don't need to go anymore. We now have a membership to swim whenever we want, but so few families take advantage, we feel like we have to support them, and they were our golden ticket for a year. misplaced loyalty maybe.. but I keep strong arming Brent to go.
Sunday, we're going to a special needs Christmas party. 40-50 people, most with children on the spectrum. Ben hates Santa, but we're supposed to bring a small toy with his name on it for Santa to give back. I have a feeling this will be a bad investment. It's being put on by a neighboring community center. They'll provide the pizza, soda, DJ and Santa, and we just show up with a small side dish or desert. Sounds like my kind of party!
All of these activities sound fun, but I think we're making our lives revolve around autism. Quick note, I do realize autism makes itself quite known in our world.. but...am I living in the "real world" anymore?

still plenty of laughs..

2010-12-06T18:00:00.002-05:00

I forgot to mention, when we went to the mall yesterday, a local dance troupe was doing the nutcracker... I rushed over and put Ben up on my shoulders to watch. The whole mall was pretty quiet, with the exception of one. As soon as Ben saw what was going on, he started squealing, flapping, and basically completely enjoying himself. Now, to be honest, I felt a little uncomfortable with the amount of attention he was getting. Ben's dad did not give a hoot, and stated "What? He's enjoying himself". So I stayed for the five minute performance in the middle of the mall. When it was over, Ben clapped forever!
Today, in an efffort to engage him, as well as keep him from falling asleep, I talked, and joked, etc. We were wrestling on the floor, when I guess he hit his back on the couch. Just enough to agravate him. As I rolled over to console him, I hit him in the privates... Talk about looking insulted!!!
Currently, he's walking around with his fingers in his ears, humming. I'm sure he's thinking... "Can't this lady take a hint?"

"That's the autistic kid"

2010-12-06T08:47:00.003-05:00

So...
Yesterday Ben, his dad and I hit the mall. No.. we weren't shopping, ya see it's mortgage week, and that always puts a crimp in our free spending. Now, with Ben, we luck out. We can go into toy stores, and toy departments in Boscov's and he's happy to play with toys while they stay in their packaging. He's great about leaving, with the promise of "we'll come back another time". NEVER had a tantrum of I want this.. blah blah blah. That would be the one "upside" to autism I can think of.
So... There we were in Boscov's minding our own buisness, when a little boy tells his sister.. "That's the autistic kid at school". Well, I didn't hear it, but Brent was standing next to them. He asked the child if he went to Bens school, he did, and Brent said "yeah that's him." Brent raced down the isle, and told me what had happened then asked me if it bothered me. Truthfully it didn't (at the moment). I'm all about intent. Did I think he was trying to be bratty? No. I think he was just spitting out what he had been told.
Now.. after some time and space, Brent asked me again later that night if it bothered me. I was able to then say, no, but a better reply for us would have been to introduce Ben, and let the boy know if he sees him in the hall he could say "Hi Ben". Turning "the autistic kid" into Ben.
Also, we have our confrence with the teacher tomorow. I will be interested to know what information is given to k-5 regarding the special ed kids. How are they explained? This child was k or 1st grade.... How does he know what he knows?
We can't pretend to be suprised anymore that even very young children see the difference in Ben. I'm talking babies kind of study him. His differences are too obvious and obvious quickly. Everywhere we go children watch Ben. I don't think they're judging him, (they're still too young) but they're trying to figure him out.
At the playground, a 2-3 year old was following him around, trying to play with him, trying to have a conversation. Well, we loved it. We wish there were more kids that were persistant. Who followed him around and found what he was doing to be fun, and worth spending the time.
Ben is so happy pretty much 24/7.
Sometimes......I just get so damn sad and overwhelmed.

Everyday Life

2010-12-03T12:17:00.002-05:00

Ben just had the 24 hour virus. Interesting how different all kids are.
The school had called that day, wanting me to know Ben had green boogies (tmi?) and seemed tired. Get used to it. I let them know Ben would have green snot from now until spring, and then some. I can't pick him up everytime his nose runs...
When I picked him up from day-care they said he had had a good day, we got home and he was running/jumping/flapping... good times, good times. Now he didn't eat his french fries, but... so what?
That night at 3:45.... bleah! No whining before hand, no crying during, nothing after. Puked and looked at me. There we are, stripping the bed, doing laundry, making the bed, etc. This went on twice more. The kid never complained. I don't get it. I still tear up when I puke (which has been yrs... knock wood)
I conduct trainings twice a month, and the next morning was one of them, so dad stayed home. You know that kids sick when he doesn't open his mouth or move out of the bed. I came home and the whole death warmed over look was going strong.
I got to stay home with him yesterday. After a nice bath, etc he seemed back to par. Except for the whole eating thing. He's lasted on about 90 calories for the last two days.
We did manage to grab a nap yesterday. A sweet 2 1/2 hour nap... Can I tell you at 11pm last night he's jumping on the bed handing me the DAMN Barney video I just had to go and find.... I think my husband was hoping I'd be impaled on the daggers he was shooting at me... but... good times, good times.

sometimes tired

2010-11-29T10:14:00.002-05:00

You know that little section in my profile that says "always trying, sometimes tired"... Well, it's upon me.
I don't know if it's the whole lack of sunlight, but I'm tired. Tired of the whole dog and pony act. I want to be selfish. I want to scream "what the %&*# about me!!!". And you know what? I could scream it. And no one would hear.
I've decided that being selfish must be very natural. People really do worry about themselves first. I pretty consistintly put my own needs and wants on hold. I do what I should do, what I need to do, what's expected of a wife, mother, employee, daughter, neighbor, friend. But sometimes, I just feel freekin resentful. I know your not supposed to do things with the expectation of recognition.... thank god! because it's just not there. I'm like that perfect employee at home. the seemless one, who comes and goes, and you'd never even realize she was standing in front of you. Why? Because your entitled ass was too busy with TV or the computer, or shouting "more milk"
I also realize these statements make me sound like the perfect martyr. Poor me... woe is me.... and guess what? I think being a martyr is perfectly natural too! As much as I feel put out and put upon... those around me feel the same way. What the %&$#!!!!!!
Well, as this holiday season abounds..... I'll try listening to carols, reading the wonderful cards and thoughts, and when all else fails.. hit the Egg Nog..... HARD!

Two steps forward, One step back

2010-11-19T12:09:00.002-05:00

Well... It was good while it lasted.
Potty time is still party time. Thank god for that. My upstairs is just starting to lose the scent of an overdue litter box.
The sleeping in bed.... shot to hell.
The last couple of nights, up he goes, sweet as can be, falls fast to sleep, then by 12:30AM he's ninja'd his way out of his room. Neither his father nor I hear a peep. We're still using the monitor, so I can't figure how we're both missing it. Of course the fact our bedroom is on the first floor, and his the 2nd probably doesn't help.
He's waking up and turning EVERY single light on in the house. The dog (bless his sainted soul) is waking Brent up (another reason I like him) Brent notices it's very light out in the house. (we keep our door partially open) When he goes to investigate... Ben's Room, the play room, the hall, the bathroom, the living room, the dining room, and the kitchen... All ablaze like we''re having a party. And there he sits by the computer. Damn! Not only does it wake us up, but it is a little scary.
Poor guy is obviously afraid of the dark. Brent tells him "Let's go, we're going back to bed" which gets him an obviously frightened "No Way!" And Mr. Softy himself leads him into our bedroom. Most of this I found out this morning, with the exception of his route to bed is right over my stomach. At 46lbs, I notice.
Poor guy! I'm not sure what to do. Even "typical" kids are hard to convince there's nothing to be afraid of. I seriously doubt he'd hear our words at all.
So... what to do? Do we get an external lock so he can't get out at night (at least without our knowing about it). That seems kind of mean. What to do???????

and he keeps moving along

2010-11-15T13:01:00.002-05:00

It's the little things. The times when he does something, and I couldn't puff up any bigger without being floated down main street on Thanksgiving day.
This weekend my little wonder learned how to point and click. He would often hold the mouse, and spin the little wheel, but this weekend... He figured out that if he highlighted and clicked... magic! Could I have been any happier for him, or proud? Nope!

Another little things other parents may take for granted. My husband and I were putting sheet rock up to create a ceiling in my den. (Don't ask) Ben climbed up the ladder, grabbed the hammer, and declared "Bob the Builder" while he hammered away. Now tell me if I'm wrong, but is that imaginative play? I thought so!

It's been weeks since we've had a potty incident, and he's spending the nights in his room. I hope he knows how proud and amazed we are by him. I don't think he could

the good the bad, and the ugly

2010-11-08T10:21:00.002-05:00

The Good
I've read several posts this morning of the change in time adversly affecting kids. Who needs another issue?
Ben slipped right into it. He always does. This kid can handle a change with a skip in his step. Last week his schedule was Monday and Wednesday school, and the other days he went back to his daycare he hasn't been to since September. any issues? nope. No problem.
Time change... any issues? nope. He's right on schedule.
Additionally, the last two weeks, there hasn't been an accident or an on purpose. We're constantly hearing the toilet lid lifted, and occasionally he finishes up with a flush... not often, but seriously, who's complaining.
Lastly, Ben has spent the last 6 months falling asleep in our bed, and then being carried upstairs. Nightly he would wake up, and spend the remainder of the night in our bed. Three sunday's ago, I get it in my mind that it's time for him to sleep in his own bed. We explain to him that he's going to stay in his room, blah blah blah... Son of a Bitch if he doesn't just start doing it. Really? It would have been that easy all along? I take him up, give him a bath, get the jamies on, and we do lay in bed with him till he falls out.. but.. If he wakes up, he'll flip on his light (which we only have a 20 watt bulb),. and in his own bed he stays for the night. SWEET!!!!!!
The bad... Ben had his flu shot. Wasn't he one of the two kids who had a local reaction to it. Arm got red, swollen. Poor guy! Seriously...He can't even tell us if it hurts. We knew it itched, but did it hurt? We have no idea. I hate that!!!
The ugly... I spent the weekend running around and doing some serious laundry and cleaning. Brent and I sat in bed last night recounting all we had gotten done, and aside from the sore hips and knees, we felt pretty damn good! I love being able to say we were productive.
Oh yeah, the ugly part was I never showered this weekend, and my hair would have housed several rats, and their friends. Took two conditionings to get the knots out this morning.
One cute note - Brent and I were on the hunt for Thanksgiving decorations. They are ridicuously hard to find. We went to the Christmas Tree Shop, Cracker Barrel, Target, and Wegmans. I guess being thankful is not a profitable thing. While we were at CrackerBarrel there was a display of Willows. They're wooden figurines depicting special moments. Brent showed interest, and was showing me the ones he liked. I was expecting one of a child for Ben, but no... it was a couple holding each other, and another of a couple sitting together on a bench. That sly romantic! You know he got steak for dinner.....

never say never

2010-11-01T09:06:00.002-04:00

I have two older sons. One is 21, and the other is 19.
I always worked, and never was the room mom sort. I was young when I had them, 21 for the first, and still thought I might be cool. Room mom was not cool.
I always sent in items, and would volunteer on occasion, but for some reason, work took a front seat to many things.
Evenings I was always present. sport practices, games, and the DREADED band and choral events.
When we found out we were pregnant with Ben we made big jokes. If he wants to join band or chorus, he better make sure he has a ride, because after 12 years of those damn things, We're never going to another one again....

http://welcometomyplanet4.blogspot.com/

I changed my mind.......

Best Friends

2010-10-25T10:15:00.001-04:00

Two angels sleeping......but when they wake up... Look out!

there's gotta be gills somewhere on him

2010-10-20T11:21:00.002-04:00

Ben lives to swim. No joke. We spent most weekends this summer at his aunt's house making good use of her pool.
Living in NJ, come October this is no longer doable.
Past winters we've typically spent time at the mall, getting Ben a Happy Meal, and letting him check out the tween skateboarders at the pretty neat indoor facility the mall has. Ben enjoys the routine.
This Sunday, because we're completely spontanious type of people, we decided to go to the JCC in our neighborhood. The JCC is the same as a YMCA, but Jewish. Needless to say, you don't have to be jewish to join though.
We went, and took a tour and it is nothing shy of gorgous!
We've been going to the YMCA for open arms night, and it was ok, but this place.... WHOA!
The pool is open and light with windows, and they actually have a baby pool that's about 1.5-2 foot. Perfect for Ben. It comes to mid-ab. Nothing gives this sensory child more joy then laying on the bottom of the pool. No swimmies needed.
Well, we joined.
I had off on Monday. I picked Ben up from school and let him know we were going to do something special. He has an inner-compass. As we traveled down the first road he guessed "swing lady" That would be the OT we had last winter (he was crushing on her). We turn down a second road... "We're going to see the doggies". We had been to the shelter ONE time, but he knows what's up. I answer no.
We turn into the JCC, and he thought ok, I've been here before, We go walking in, and even though he hadn't seen the pool when we toured. "We're going swimming!"
Well, I can't tell you how thrilled that child was. He jumped, and dove, and splashed with utter joy.
When it was time to leave, he started to get pissy. I told him not to worry. This is Ben's pool and we can come anytime. Can you hear the dum dum dum.... Next day I picked him up from school and of course the aid tells me he's been saying I'm going swimming! complete with arm motions.
Remember, alll this comes from a fairly non-verbal child....
Membership at the right pool ----- Priceless

look at that kid!

2010-10-14T11:58:00.003-04:00

Tell me he's not gorgous! (Now that I've figured out how to upload pics)
I know looks aren't everything, but they don't hurt either!
Have I ever mentioned how Ben's dad and I are both dark hair, dark eyes. Ben... Blonde hair, blue eyes. I don't remember a drunken escapade 5+ years ago, but I don't think his dad has counted one out.. LOL. Funny thing is, Ben has his fathers earlobes, which happen to be huge. They could only account for 1% of the population, so I think that soothed his nerves.

Back to School Night

2010-10-08T09:06:00.002-04:00

Interesting.
I started off the night going to the Room Parent Meeting. There were 9 mothers there. I was a little suprised at first by the small turnout, but.. I get it. Nights can be tough.
Well, you know how there's always the very involved parents. I'm not one of them, but I truly do apprecate them. Schools and districts would be no where near as good as they are, nor would staff be held as accountable if it weren't for them. They've always somewhat intimidated me though. I will say, now that I'm older, no so much anymore.
The evening starts off with speaking of the low turnout of volunteers. I'm honestly shocked. There are classrooms with NO volunteers. 25 kids per room, and no one was able? OK, moving on. The veteran moms then ask that moms who volunteered, to keep the grade level parties equal. Last year they had (for example) one third grade class having pizza, a pinata, and balloons, and the room next door had pretzels and apple juice. Well that makes sense and I get it.
Then the warnings start.... Don't expect parents to participate/donate/acknowledge requests. If you get 40% your lucky. hmmm. Keep your reciepts in case you're asked to show your purchases (seriously), be prepared to pay yourself. Well, I am the ETERNAL optimist, and think... I don't believe it.
After the meeting, two of the volunteers (out of 9) were kindergarden moms. They approach and ask if I'm an AM or PM parent. They'd like to collaborate the parties. I can look in my crystal ball and know they're about to be uncomfortable. I reply my son is actually full day. They look a little thoughtful thinking, "Why didn't I know there's full day?" and I continue with, "There's only 5 kids in his class, etc". The lightbulbs have gone off. They quickly gather themselves, and continue with "Oh, well you'd only need to buy for 6, etc" They were very friendly and asked for my email to get together to discuss. I really would be happy to work with them, and could possibly use this alliance to provide additional integration with the other classes. I'm good. Just hope they email me.
I leave there and go to my sons class. I see the teacher outside the door, and begin apologizing for being late. She's just glad I'm there, because I'm the ONLY parent. What? I assure her that another mom is sure to be there, (I knew her from Barcley), and she and her husband did arrive a little later. 2 sets of parents out of 5.... that =, you guessed it 40%. hmmm again.
I don't judge other parents. I mean that sincerely. I don't know their situation. They may be a single mom who can't miss a shift at work. They may have additional children and no support around them for babysitting, I don't know. I was still suprised though. Of all the children, these are the kids who can't tell us what their days consist of. I have no idea what Ben does, or what he enjoys, save for the paper that comes home each day. The information is minimal. I NEED to know.
In the end, Ben's teacher did say she and the staff adore him (of course), he seems to be enjoying himself (I thought so), and the evening was pleasant.
Add to this, Ben has historically been horrible when we left him with a babysitter. My mother, grandmother, his aunt... He screams, cries the entire time we're gone, and there's no comforting him. In Ben's world mom and dad go nowhere without him. Makes for a tough time going anywhere. Last night I told him grandmoms were coming and I was going out. His answer was "No Grandmoms... no grandmoms tonight" (Typical answer whenever I say they're coming).
Well, we got home last night and he was wearing nothing but a smile. Buck naked, but seemed to be enjoying himself. Can I hope for this to be a turning point. Could he finally of realized we'll come back, and those two old ladies aren't going to boil him for dinner... should I make reservations now?

what a suprise!

2010-10-07T12:43:00.003-04:00

I recieved a note home from Ben's teacher yesterday thanking me for volunteering to be the room parent....uh..... what was that?
I did volunteer to be the room HELPER.. but if there was the picture of someone who's NON artsy craftsy.. there I would be.
I hate to do things half way, and the little thing like a FT job in a different state give me pause (I'm making that sound more dramatic than neccessary, it's just a 45 minute commute, but still...)
Anyway, I get the idea that no one else volunteered, so I'll do it. Lucky me has the flexability to be able to cruise the internet on Halloween crafts, etc during work.. (shhh don't tell.)
Another little issue I have is asking others for help or contributions. I guess this is a good way to get over it. Tonight is back to school night, so I'll meet the other parents try to gauge their interest and ability to assist, or just send in "stuff"
I guess that also puts me in charge of the holiday gift for the staff. With only 6 kids in the class, and 4 adults to buy for... oye. Just another stress.
I'm done bellyaching. I have huge hopes of hearing how the world truly does revolve around my darling boy tonight, and I'll get to see why there's a light in his eyes everyday the bus comes to pick him up.
J

then say nothing at all

2010-09-28T10:45:00.002-04:00

I had a dental appt last night. I've been going pretty frequently for a variety of issues, and have gotten to know my dentist and his wife, who is the office manager, pretty well.
I always have waited in the parking lot for Brent to pick up Ben on his way home. Last time, Brent and I had an appt together, so Ben went in. He wasn't happy, but it didn't take hime long to get comfortable.
Last night, I told Brent I would bring Ben inside and wait for him there. The dentist asked me to come back, and his wife said she would keep an eye on Ben. I let her know he probably wouldn't respond to her conversation, and she replied "that's alright, I'll talk to him anyway." Great answer!
When I went and sat in the chair, the dentists comment was "I guess you have a long road ahead with him". Now... I found that to be annoying. What should my reply be? Oh yeah.. whoa is me?
Why would he say it? Is that a normal comment? Am I really just an oversensitive b*tch?
Funny thing though... When I was going back to the exam room, the wife said to lock the door. Keep Ben from a grand escape. Well, she must have been on the phone when Brent arrived and knocked, but Ben kept flipping up the mail slot and peeking out at him before going off to play again. how cute is that!

things aren't always how they appear

2010-09-24T15:51:00.003-04:00

I went to pick Ben up from his SACC program yesterday. I haven't mentioned how much I LOVE it. SACC is the school based child care. I went from paying 800 a month and being FAR from thrilled with the daycare (remember.. that was for 2 1/2 hrs a day) to 224.00 a month! Sweet!
Not to mention, there's a slew of staff and one has taken a personal interest in Ben. When I go to pick him up, he's running around the playground with a permant smile on his face. How refreshing!
With that said, Thursday's I get out of work early. I got to the SACC program and saw Ben laying on a mat, on the stage of the all-purpose room (gym/lunchoom/auditorium)
about 5 other children are standing around him. My thought " Isn't that nice.. look at all those kids taking an interest in Ben.) I walk up to the group when a 7 yr old girl looks at me and says "Finally!"
huh.... Turns out, Ben was getting very frustrated at the wait to go out on the playground and proceed to scream shrilly. The kids had come to see what was going on.
When I took Ben out, we sat on the curb, and I explained how going to Big Boy SACC was a privilege, and he had to behave like a big boy, etc. He did appear to listen intently, but…
Here's to a better day. And now, maybe I can afford that london broil I've had my eyes on...
(just kidding) :)

Who me?

2010-09-23T17:26:00.000-04:00

THESE MOMS SHARE SPECIAL GIFTS

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecelia. Rudledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious, "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy."

"But, Lord, I don't think that she even believes in you."

God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods, "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says Momma for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised in midair.

God smiles, "A mirror will suffice."

what should have been

2010-09-09T09:59:00.002-04:00

Tuesday "should have been" a really big day in my house. The day that so many parents look forward to and dread all at the same time.
Ben had his first day of Kindergarden.
The thing is... Ben's been being picked up to go to school for two years now. So... it really wasn't that monumentel event I wish it had been.
Brent and I should have had him dressed to the nines (which we did), hair brushed (which we did) and delivered him to the school for the big walk up to the door.
We didn't.. I didn't even take the morning off. Why? That would be too upsetting to Ben. He's used to getting on the bus, but when I'm home, in his mind, it should be a day off. Why would I be home and not him? Days that I am off (few and far between), I pretend to leave and hide in the bedroom until he leaves for school.
So..... The big special day, was just another autismic day.
Brent and I tried to prepare him as best we could. We made several trips to the school to show him what it looked like. Spoke that Barcley was no longer his school.. played on the playground, crashed the door one day in August and recieved a 5 minute tour from the principal, and made an appointment with his teacher to meet her and the new room last week prior to the start.
We seriously try.
Ben's first day was pretty good. The teacher reported that although he did not want to get off the bus, she was able to coax him eventually, and he gave her a hug, took her hand, and walked off to her room. It was reported he had a happy day these first two days. Thank God!
Ben has also started another new program. The SACC program which is the school based after-care program. Our daycare cost should go from 800 per month to 229 per month. SWEET!
Only one little issue. Have I mentioned Ben has regressed with potty training. He is now averaging about 6 accidents per day. He's not even making an effort to go to the bathroom. WTF!!!! Seriously? Can't something just go right?
The after-care program said they would change him. just between you and me? My biggest fear? He'll whip out his stuff on the playground and just pee right there in the mulch. and then guess what? He's outtttaaaaa thereeeeee! Keep a good thought!
Our school district is off for the next two days (jewish holidays) so... Ben get's two days of school, get's used to it... and then off to daycare for two days. My head's spinning, my guess is his too.
Also the issue of communication....
Friday, I'll be picking Ben up about 2 and heading to the beach. We'll stay until Sunday building sandcastles, swimming, going on rides, eating pizza and icecread..... weeeeeeeee. oh pardon me, I just got excited. Hopefully Ben will be too!!!!!!

it's a friggin see-saw

2010-08-09T14:06:00.002-04:00

Life.... phhtttttt

I swear life is a constant see-saw. you're up...your down...
When I'm up, it's like out of one of those B-movies.... the blue sky, the sun shining, and rose petals falling from the sky... what a ride
When I'm down... there you are, on the ground, staring up at everyone around you.
I know I'm not alone on this ride. The see-saws are lined up for miles with every imaginable person riding. But you CAN'T get off. Even when you think you're going to puke... STUCK.
We practice balancing. of course the fact that there's more then one other person rocking your boat doesn't matter. you spread everyone out, and hope no one jumps off (I always hated that kid), or falls off..... but they do.
I picked Ben up from day-care on Friday and one of the young aids is speaking of how wonderful he is, putting words into catagories. he's soo cute, etc. I leave there thinking that Ben truly is an ambasador to autisim. He's introduced autisim to several people who hadn't known someone with it previously. It made me proud of him.
Ben's communication had really ramped up well. Speaking of how he's started to catagorize, he started with transporation. I was playing around with him and started with Nick jr shows. I mentioned a few, to get the idea going, and he threw in several. Oswald, backyardigans, and one other. Shows he fully understands what I'm doing and enjoyed participating. We did it with colors also. Great!
We went swimming on Thursday and an hour in looked at me "get hamburger.. go home". OK I can deal with that.
Now when the ride goes down... BILLS!!! I f*ck*n hate them. My husband has a unique way of deciding which bill to pay. Cable yes... car payment.. they can wait... AHHHH!!!!!!
We went to open arms on Sunday at the discovery museaum. It's nice... but.... it can bring me down. There are the children doing well. I can't tell. (and I'm always watching) and others who are so obvious. Where will Ben fall,,,, What improvements.... I'm tired!!! and that's without even doing anything.
PMS is a bitch... and today... so am I

Jack the Ripper strikes again

2010-07-29T13:07:00.002-04:00

Funny? Not Funny? Definitely not funny...
My son, the last month, has taken on the persona of Jack the Ripper. (sorta). He will be sitting playing with something... stand up... walk over to some unsuspecting child and begin scratching their necks or strangling them. Isn't that sooo special.
It has happened at school and daycare. It's a completely unprevoked action. Don't get it.
I spoke with Ben's special ed teacher and she feels that this is a sensory seeking activity. Great...
The children already do look at him oddly.. (their 3). Parents always give me that extra special smile... so nice...let's see how long that lasts when their kids running screaming from mine.
Isn't it bad enough he has to be pretty non-verbal with the exception of noises. shake his hands, etc... babble.... but now they can have real reason to fear him. The child yesterday started yelling he's strangling me. LORD!!!! I need this to stop!!!!
The nightmare of your child being friendless, regardless of the fact he has no use for other children, and you know it's your own pipedream, that he'd want nothing to do with... and now another hurdle/obstacle/barrier/bitch....
The manager of the dadcare took ben to her office and sternly explained that this was not allowed. When I came to pick Ben up she started talking to him again. He turned to me and whispered( not so quietly) "spooky!". Yeah.... I can see it.
I tried denying his afternoon cookie for such poor behavior.. but the tears the cries....I suck!
Here's hoping today is a better day.
P.S - just got a call from Ben's school. He's now taken to escaping the booster seat on the school bus, and they'll be using a harness to restrain him.... goood times... good times.....

That's it?

2010-07-27T12:15:00.002-04:00

I would tell you that everyday is busy..... I find "something" to yap about constantly... and yet.. when I think about what to write down, I'm blank. Completely.
I read several blogs and everything written I relate to. Whether it's a current state, or a nightmare I only let myself think about briefly. All the blogs relate.

14 of us went camping. Ben is very good about going on vacations. My mother (you know the world renound disbeliever) thinks that this is a wonderful sign. Don't you know ALL autistic children have issues with change. This alone can ensure her that he will snap out of it one day.

Well prior to going camping we do spend time talking to ben. we're going camping, we'll sleep in the tent, we'll go to the rides, etc. We show him pictures from last year, and I have no doubt whatsoever that he is very aware of what we're doing. Funny thing is, it takes FOREVER to pack the car for these trips. We bring ALOT of stuff. As soon as Brent went out to pack, Ben jumped in his seat and refused to get out. good enough.
We get packed, on the road, eat lunch, and when we get there, he jumps from the car to hit the creek. I let him sit beside the creek while Brent and I set up. Anyone who camps knows this is an extended activitiy. Add the fact it starts to POUR and there's us running around, and Ben still sitting beside/in the creek. good times good times.
After getting set up and the sun returning, we went to have dinner and some rides at the park. we go to Knoebels Park in Ellysburg PA. I hope very few people read this blog, because I love the place and consider it to be somewhat of a well kept seceret.....
We put Ben on his first ride of the night and trip... the whip... where he was the only child on, and proceeded to try to climb out while it's moving. BAM!!!! right there is our different world. I hate it! We walk thru the park watching 2 year olds exitedly run to the next ride, chatting and smiling, and there's ben.... not....
After that, aside from the moonbounce, I'm not letting him go on anything by himself. We stand out. People know. Adults know. Children know. I hate it.
There are some crusty people who work at Knoebels. I remember the woman from the moonbounce as the same as last year. She was just as crusty. There were no crowds, no lines, no waiting. When Ben's turn was over, I handed her tickets and said he'd like another turn. She began insisting that he come out. Brent starts backing up at this point. I questioned the rationale of making him get out just to go back in. Her answer was "he has to learn". Thanks. I prepared myself to go in to get him, when some lightbulb must have gone off and she let him stay. whatever.
Ben then went in a HUGE pool of balls. The older woman attendent asked me if he was disabled. Just like that.... what? no dinner first?
I then realized there's no making me happy. If you don't see his special needs, I'm annoyed. If you do see his special needs I'm annoyed.
I think I just hate it.
The trip was a success though. Crystal Pool, limited rides, and hours in the small creek. Ben slept each night soundly, and the food and company was excellent.
I think I need a vacation....

hey there!

2010-06-28T16:05:00.003-04:00

Well.... I'd love to talk about how busy and exciting life has been... but that would be b*llsh*t.
There has been some noteworthy events:
Ben graduated from pre-school. There was a cute little ceremony where they stood on a box and the room clapped for them. My mother, grandmother and 21yr old went to enjoy the festivities. Too cute!
Brent and I went to visit Bens kindergarden.
That was a positive experience. We learned plenty, or at least I did.
Ben could possible be in this classroom for 3yrs. He could then go to the next class 3rd-5th. I like that. teachers/aides will really get to know them. Talk about positive people. They spoke of the kids who had come in completely non-verbal who are now in main-streamed classes. They practically promised us that wait and see... you won't believe the change you're going to see. How often do you hear that? People ready to kick it into high gear instead of worrying about covering their butts.
It was almost a little hard to hear. Don't dissapoint me. I can handle not knowing, but this build up was pretty big.
Ben will be 5 in July. Up until last night he was still in his crib. We just never took him out, and he never seemed to want to get out. We went IKEA and bought him a bed. while I gave him a bath, his father took down the crib and set up the bed frame. He was so cute when he went in his room. He gets such a smug little look on his face. We asked if he'd like to sleep in a big boy bed.. typical reply "ok". He waited patiently while it was put together and sheets put on... then in he went.
Up until last night, we had a security knob on his bedroom door. The kind that just spins unless you hold it right. I took it off. If he wants to come out and use the bathroom etc.... blah blah blah.
Well...... 9:30 we put him to bed "asleep". We came downstairs, and while I let the dog out, my husband putzed around. He rounds the bend from the den to the living room, and who'd sitting on the couch. You can sympathize that even the face of an angel when unexpected can be like a little demond! LOL Scared the crap out of him. We watched a little more tv, then he fell asleep and I carried him up again... until 2am when he decided to grace our presnece again.
I'll try this new found freedom for about 2 more nights... then lock his ass up again!
(I mean that in the nicest of way!) (We still do use the monitor)

reality bites

2010-06-02T08:57:00.002-04:00

Ben has been placed for Kindergarden. He is one of two kids in his class who are going to a self-contiained class. All the others are going to language support, or a less restrictive class.
Think that doesn't bite? It does. I found this out when I went for the mother's day tea. Mother's were discussing which school their kids were going to, etc.
Such a bummer!
I will say that Ben's receptive language is perfect. He does know and process everything we say to him. He's able to communicate most of his needs (one-four word sentences) and has recently started singing. His two songs du jour... For the holidays.... two names say it all (Raymoore and Flannigan commercial) and the wheels on the bus. It is adorable, and he's really trying to sound good. (he has his mother's pitch.... ewwwww)
Other then that.. we're in full summer mode. We were swimming twice this weekend, went to a fair, and life for Ben couldn't seem better. Of course he's become a pool snob. He only wants to go to the YMCA or to his aunt's pool. We fill up his little blow up pool, and he says no pool... no outside. The kid suddenly doesn't want to go outside??? WTH? Brent and I are total outdoor people.
We took down a bush/tree this weekend, and while we're tying it up I bought out cars, etc for Ben to play with. He sat in Brent's truck. dud!!!
The one GREAT thing we're looking forward to is getting Ben into the school districts after-care program in Sept. It will cost us 230.00 a month opposed to 800.00. Of course that money will be chewed up and spit out god know's where... but almost 600 extra bucks a month!!! SWEET!

I spent a lot of time with Ben this weekend. Alone.

2010-05-17T14:10:00.003-04:00

I spent a lot of time with Ben this weekend. Alone.

Saturday, Brent went to help his sister and her husband at their house. I never mind when he goes, but believe it or not, I feel like Ben is a two man job. While Brent was gone I took Ben to the park to throw rocks in the water. Sounds good on paper, sounded good to Ben. the execution of this activity... not so much.
I did get Ben to walk. That itself is a feat. Funny thing is, doesn't he decide to run. Great! I'd of worn my good bra had a known that! We make it to "our" spot. Now needless to say, sitting BY the creek was unsatisfactory. He REALLY wanted to be sitting in the creek. This leads to anxiety attacks, and raised voices (all mine)
We stay for awhile then make our way back to the car. His wet gritty pants must have been uncomfortable, because he tried disrobing the entire time. Good lord have mercy!!!
Sunday, Brent had his own agenda of outside chores he wanted to accomplish. This left me with Ben again. I decided to be brave and go to Wegmans with just the two of us.
It was not a pleasnat trip. A "funny" thing ben says is when he wants to get on our shoulders( which is anytime we're out of the house" he says "put on sweater". I guess he thinks he's our sweater... wacko!
well... by the time dinner rolled around last night, I started thinking... If Brent and I were to seperate/divorce (and remember, we had gotten along like two peas in a pod all weekend), at least I would have 3 days a week of peace. yeah, the other days may be hard, but the days Brent had Ben would be full of peace.
Reeks of desperation huh!
Additionlly in the morning, I thought, I'm 42 yrs old... I have an almost 5 yr old... and there's no end in sight. Can that get your heart beating and your bloodpressure up? I may never have the peace that I've always wanted. How do I get through another night?
But I did. I played, I laughed, I ate, and I made it through another night.

Sorry if this was a downer!

why the puzzle piece works for me

2010-04-26T18:19:00.002-04:00

I'm puzzeled by Ben.
I was reading an expert from a Dr. I forget his name, but he talks about how difficult it is for autistic kids/people to communicate. And I believe that.
But why is it so easy for Ben to communicate some things?
If I sing, he's VERY able to let me know he doesn't want me to (Everyone's a critic)
If I ask if he wants to go swimming, he's able to communicate an emphatic yes.
Everyday he knows to ask for the cookie I'm packing when I pick him up from daycare,
yet.. everyday, he doesn't get "Bye Mommie" right.
What is the key, or the missing puzzle piece that let's some things be so easily communicated, clearly!, though typically in an elementry way, while others seem so COMPLETELY out of reach.
Is it points of interest? Some things get through while others stay way on the outside?
I'm puzzled!

The glass is half full

2010-04-26T11:53:00.002-04:00

Often I think I complain. If I weren't so "young" I'd swear I was going thru menopause. I'm just getting bitchier by the day....

With that said, today, on a rainy monday, I'm going to look at my glass 1/2 full.

1. Ben is completely potty trained. He wears underwear (or nothing) to bed, and stays dry. He hasn't had an accident at school in a long while. Yeah!

2. Ben wanted the dog to play with him last night. He went into our bedroom, and when I went to shoosh the dog away, he told me "No Way!" He wanted the dog to play with. I have to think that's a positive

3. I'm not pregnant... hahaha.. always a good thing for me (Can't get pregnant anyway, but I'm the one who would say that... and BAM

4. Ben is a complete and total Daddy's boy.. Frees up some time for me.

5. I got the house clean this weekend. The husband helped, and as much as I HATE!!!! to clean, put my head down and just did it. It does feel good when it's all done.

I think I hurt myself coming up with the positives. I'm at work, so I'll close the door and rest. (something I can't do at home) (hahaha)

steamed and again...scared

2010-04-22T07:45:00.002-04:00

Tuesday there was a "historical" vote in Cherry Hill. It was the school budget vote. New Jersey Governer Christie encouraged all to vote no for the budget if teachers didn't take a pay freeze. This after the state had majorly cut funding to school districts, special ed, etc. (I hate that MF)
With that said, I did go, and voted to approve the school budget. My opinion.
The budget did not pass. It was defeated by about 500 votes. Cherry hill is pretty big, so this was a minimal amount of votes.
I could deal with it. For me and Ben... it doesn't matter overly much. He's going into a contained kindergarten and the state (at least for now) mandates 1 teacher and three aides, no more then six children per class.
There's a talk radio station. I don't listen to them, because like many talk jocks, their job is to annoy you enough to call in, get ratings etc. They had been big proponents of not passing the budgets also. I wondered how they had reacted to 60% of jersey schools not passing, and thought I'd tune in for a moment.
Well.... The first caller I hear is a teacher in South Jersey. She feels money is wasted, and it's because "everyone" needs to be included. Are you kidding me? This is a teacher? Now the jocks ended her call, and made it sound like she was suggesting kids be grouped by ability like we were when we were younger. I knew better what she was saying.
The next call... and I shit you not... was from someone who worked in the school district. I don't know if he was a teacher, janitor, landscaper... but.... He feels money is being thrown away on Special Ed. He went on to say that special ed teachers are plentiful, because they can only work with so many kids at a time, and dare he say... we the parents are demanding services.
I was rounding the bend toward home, and at that point just turned off the radio. I was too stunned for words. This came after reading a blog: ://roostercalls.blogspot.com/2010/04/walking-plank.html
The blog talked about a kindergartner being teased by his peers. I had left a messege saying it was up to the teachers and staff to ensure kids understood the child, and that there was no room for teasing or singling out this child... or there would be consequenses... etc.
Then I heard the school staff of my state talking about specail ed kids, and knew that the hopes I had of relying on the public school staff would be changed forever.
Did you ever have something, hear something, see something... that you knew wasn't going to leave you. Their ignorance and inflaming comments were it.
I know I can be prone to theatrics (I would deny it to anyone I live with)... but seriously... it reminded me of pre-war germany where the jews and infirm were identified as being the ones who were preventing the masses from having all they wanted. are typical parents going to begin to see my child as someone sucking up their resources and resources that could be used for their child " who could actually benefit from it"
Beat night last night.

Defined or Titled

2010-04-19T09:22:00.002-04:00

When I think about how I am defined, there's several titles that come to mind.
Mrs, Spouse, Mother, Daughter, Work Title, Home Owner, etc. You get the idea. Fill out a survey, or school paperwork, and you're asked to define yourself several times.
Where is this going?
We went to the Philadelphia Zoo yesterday for autism awareness day. Had a great time, they really do a lot for it. There's a tent with entertainment all day, vendors, and several families wtih children on the spectrum.
Probably could also say, many suprised families that had no idea it was a specail event at the zoo, and probably wished they had picked a different day. That's not being cruel or thinking they're cold. It's got to suck when your kid says multiple times, "what's he doing, is that boy in a wheelchair, what's wrong with them?" I know there was a recent time, I would have sunk into the ground.
We had Ben in his new "stroller", and I had thought it was wheelchair esque, but now I'm sure. The whole "Is that boy in a wheelchair?" was directed toward Brent, and the poor dad probably got a callouse wheeling out of the area so fast. LOL
Anywhoo.... Brent is a huge advocate. If there's an autism awareness item to be bought... he's there. Got himself a t-shirt, we bought a few stickers stating someone in this home is autistic. One for the house, and one each for our cars, in case. He bought himself another big ass magnet, which he put on our fridge. Our fridge already has a sticker on it.
I didn't say anything, but I don't want it there. Ben doesn't get it or notice at this point, but WHEN he does.... I don't want him being defined by autism.
Is autism a title or definition? I'd like to go with title. Son, student, baseball player (hopefully), autistic. My fear is that Autistic will take it.
Just think. Of all the titles you have, which one defines you? I can't grasp on to any single one. Each is very important to me.
I also don't want one to = Ben.
I don't know. What's the answer. Have I not accepted this yet? Am I trying to deny it? Does Autism define him?
I didnt' say anything to Brent about the fridge magnent. Maybe I'll just hide it. Blame the dog.

the dreaded haircut

2010-04-14T13:15:00.002-04:00

Well... we have no choice.
This weekend we will do the WORST!!! chore of all in our house. The dreaded haircut. While I was looking at bens hair (a lot of it!) I started dreading it.
It's another of those places where you just feel so different. I hate the other parents staring with utter pity. I can't go PMS'ng or I'm tearing up, and just making it worse. Ugh!
So let's see: Haircuts, Dr's visits, preschool pickup, any public shopping place, restaurants, the park, ahhhh I'll make it simple, outside our four walls. All the times you stand out and you're "different" HATE IT!!
Brent and I even laugh that we are so below the radar type people. Never want to stand out. Go figure!
Every morning when I leave for work, I go thru it with Ben. Those milestones that just don't happen.
"Bye Benjamin!" he glances at me "Bye Benjamin". "No Ben... you're supposed to say bye Mommy" Every morning. Come ON!!!! The same sentence, the same way, every day.... WHEN???
The daily guilt. I'm not spending enough time with him, I'm not working enough with him, I'm not cuddeling him enough... AHHH!!!!
Believe it or not, I'm in a good mood. (Bet you'd love to see me bad!)

when ornry = funny

2010-04-12T15:10:00.002-04:00

It was a beautiful weekend in jersey. Many of you out there probably don't believe that's possible... but jersey gets a bad rap.

I'm sure I've mentioned my husbands pond out back, and our dogs LOVE for the pond. Well... this weekend it came to a head.
My husband arrived home friday evening with a car full of chicken wire and metal posts. One peek out the window, and I knew....
Saturday morning arrived, and said posts were laid about the yard. He looked like he was struggling, so I went out to lend a hand. Fortunately we work well together. He had BIG plans on encircling half the yard, I put the ole kabosh on that.
Anywhoo... the hated mother-in-law stopped by to take Ben for lunch. He cried when he heard, my husband walked him out to the curb, put the car seat in, and off he went. I hated to see him go, since he's so unhappy, but he does come home in a fine mood, so... what can I say. an hour and a half per month, whatever.
Back to the yard. in that hour + we were able to get the stakes in, the chicken wire attached, and my husband sat back to enjoy his work.
The whole time this is going on, the dog is whining and whaling in the house. The time to test is here... the door opens... and the dogs starts. he's chewing the bottom of the fence, pulls it up... he's in. Husband gets tent stakes and stakes down the fence.
Dog looks for the weakest link... finds it by the "door" being held closed with eye hooks. A few good rushes, and bam... he's in.
If you could have watched the two of them, I can't tell you the hours of enjoynment it gave me. I think the dogs in his teenage years, and the power struggle was more then I could have imagined.
This fence, pond clean-up, etc was a two day affair, and I'll bet the neighbors had a bit of entertainment themselves.
Great weekend in Jersey.

National Autism Day

2010-04-02T10:56:00.002-04:00

I wish I could write like this: http://adiaryofamom.wordpress.com/

Thankfully she can.
This mom talks about our children needing acceptance. We as parents looking for understanding. Commodities in a tough world sometimes.

As a positiive, I think back to elementry school, and recognize the two children there I believe were autistic. As young children, we were facinated by Chucky and his flapping hands. Many of us imitated him. Not making fun of him, but just interested in how it looked and felt. innocence of childhood.
Later I remember a girl Dina. She was bullied, I just don't think she knew. We'd all raise our feet when Dina walked across the floor. She smiled and laughed and thought it was a game. THANK GOD!

I remember the first child I recognized as having autism. He came into a restaurant I was working in and rocked and repeated phrases. I was completely unfamiliar with autism, but recognized this wasn't an example of poor behavior or parenting.
I've been lucky. I still haven't had that "incident". I know it's out there. I know the time will come. What will I say? How will I do? I don't know.

With bullying being front page news lately, what parent of an autistic child isn't haunted by what could happen. Who hasn't revisited every time in their past when an act of kindness was too much to ask. I could be a rotten kid sometimes, but even back then, I recognized something wasn't right. Did I stand up, no.

I think kids are different today. Kids really don't see ethnicity like my generation did.
Kids don't see gay lifestyles the same way we did. I think they're exposed to role models who allow them to see different people in a respectful way.

God I hope acceptance continues down the line. Please let my child find a comfortable place in life where others can see his value.

God please!!!

We should all care

2010-03-31T17:01:00.002-04:00

How many causes are out there we vow to uphold. Several, and most are completely worthy. Well.. I have a new one. When we (Adults) are out, whether it's the mall, the park, the bus,and we see kids being inappropriate, we speak up. How often have you seen unacceptable behaviour and given a look, or said something to whomever you were with, but didn't address the person with the behavior?
Today at the park a group of young teenage boys were hanging out. I have no problem with that. As I enter the park I'm watching one boy kick the wood bars out of a fence. They're the big log bars and they're removed and put back 100 times a year, so I wasn't overly invested, but said "Don't break the fence". This was said pretty casually and without malice. One boy, which is all it takes begins being "fresh" I say "you shouldn't be fresh" he comes back with more. Now, I'm not concerning myself with fresh ass, that's for his parents who must know what he's like, and I'm sure eventually the police will become his friend, I feel bad about this.
The thing is.... Let's as adults agree not to allow kids to behave like this without comment. Let's agree as adults when kids are speaking and looking for the shock factor with eithe language, sexual content, etc, we stand up annd say something.
I live near South St. in Philly and was there a couple Saturdays ago duing the day. That night a huge group of kids had a flash mob. They drug people from cars, kicked a woman's teeth out and generally led chaos. It is time for adults to say No. If there's 1, 2, or 10.
It's for our good as well as theirs.
And if your a parent and a neighbor or anyone takes the time to let you know about your child thank them.
Don't play neighboorhood peacekeeper. If you know a neighbors child is doing what they shouldn't, have the respect to think the parents would want to know.
This is my vow.

Big night out

2010-03-29T13:19:00.002-04:00

Brent and I went for a night out Sat.
It is truly a feast or famine situation. 46 saturday nights a year, we're sitting in, or a big night at Micky D's.
This saturday... We're invited to my bosses house for a party
It's Ben's open arms swim night at the YMCA
Our neighbors invite us to an all expense paid night at Harrah's..

What the F*

My mom came over to babysit and she was meeting this challenge with a very positive attitude. Well... that didn't last long.
Ben started crying when we left and never recovered until he went to bed. He refused to walk upstairs, and my mother can't carry him... They were both left traumatized. All this in 2.5 hours.
Is the answer.. don't leave him, or leave him more often?
I don't think our babysitters will last too long.

We went to the party, which is a 45 minute drive. Brent is not a drinker, so designated driver is no big deal. I did ask on the way home (we left at 11) if he wanted to stop close to home and get a beer. His answer was "we have a lot to do tomorow (I was cooking passover). We reminised about the times when it DID NOT MATTER what was planned for the next day, we could go out, tear it up, and still get her done.
Then we started thinking how old we were when we did that, and decided that indeed, it was a good idea to go home, get in bed, and rest for the coming day.
Getting old is a bitch!!!

Mr. Christie:

2010-03-25T09:46:00.001-04:00

It's so funny, I refuse to curse or to attack you personally, and yet it continues to just get harder to keep that promise to myself. The more I read, the more informed I become, the harder it is to not personalize this.
I read this:To close a deficit that he asserted was approaching $11 billion, Governor Christie called for the layoffs of 1,300 state workers, closings of state psychiatric institutions, an $820 million cut in aid to public schools, and nearly a half-billion dollars less in aid to towns and cities. He also suspended until May 2011 a popular property-tax rebate program, breaking one of his own campaign promises.
SERIOUSLY?????You're taking from children, the mentally impaired?... then I kept reading:cutting state-financed school breakfasts and rental assistance and trimming the state’s earned-income tax credit to 20 percent of the federal benefit, from 25 percent.
Well Mr. Christie. I'll be in Trenton on Wednesday. I'm joining other parents and childrens with disabilites to come and let you know our feelings. I'll ask that you come out to speak to us, but I've seen nothing but arrogance and a bullying attitude from you. Additionally, if I were to see you face to face, I don't know that I could keep my own promise to myself.Better you should hide away in shame.

hate crime?

2010-03-18T12:00:00.002-04:00

Would a reduction of 98% in Special Education funding be described as a hate crime?

Crimes and violence against people with disabilities is an invisible epidemic. These are largely violent or personal crimes, rape, assault, and murder, as well as economic crimes. Most experts agree that the rate of violent crime is from 4 to 10 times higher for people with disabilities than for the general population.
The motivation for such crimes are based on deep psychological distortions such as bias, contempt, hate, anger, deep insecurity, the need for dominance, and a discomfort with the different. There are offenders who deliberately target people with disabilities. These are often people who are intensely insecure with a constant need to address their feelings of inadequacy and lack of control over others. They seek authority and control and a sense of superiority over others perceived as inferior and vulnerable. This is a description of a classic bias or hate crime.

and I emailed him again

2010-03-18T07:52:00.001-04:00

As I continue to consider the ramifications of your budget choices, I also began to think...The fights you go thru with a "non-typical child"People staring at you wherever you goPraying that a child takes interest in yours so they can hava A friend. I single child that will see mine for who he is.While most parents are planning for T-Ball, summer camp, and kindergarten, We're doing estate planning for when we can't be here to take care of him anymore.Now throw in having to fight the governers office for their ignorance and indifference.Thank you Governer. I must say, your 98% cut to my son's funding was a worry, fight, and heartache I never saw coming. Good Job!

email to Gov. Christie, NJ

2010-03-18T07:14:00.002-04:00

This is the email I woke up to today. What are you thinking? Are you kidding? I wonder.. do your kids go to public school? Do any of your children have special needs? I'm going to clarify for you in case you are confused.. My son is not picked up in a limo each day. My son is not fed filet minon or sea bass for lunch. Our children are not being flown to Disney World for school outings. I'm sure you think this money would be better spent by using it for.... no... I can't actually come up with how you are thinking. I've disagreed with politicians before, but often, and even with George Bush, believed that they were actually doing what they thought best for the people they represent. Bluntly.. I think you are doing this for your own good and for a future soap box to stand on. There is no doubt in my mind that you are using our children, their education, and for many special ed students, their lives to further your own ambitions. Karma.... it's a bitch.

____________________________________________________________________
Dear Members,The below message was posted by the district on the website yesterday. We have learned that the Special Education Categorical Aid was reduced from $5,790,429 to $93,517. It is a reduction of 98.4%. We will keep you informed on our advocacy efforts to fight these cuts.Please note that much of the information you have received on the district’s budget is no longer valid. As spelled out in their press release, “an additional $6.1 million in cuts and/or revenue enhancements will need to be identified to close the gap created by the loss in state aid.”The final budget meeting is tonight at 7 PM in Cherry Hill East’s Auditorium.Nancy Muldowney“The PTA organization is a volunteer organization of adults and students whose sole purpose is to advocate for children and youth.”

DISTRICT TO LOSE $8.5 MILLION IN STATE AID FOR 2010-201150% Reduction in Aid Follows Loss of $3.9 Million This YearState aid figures released late this afternoon show that the Cherry Hill School Districtwill receive just $7,937,365 in general fund state aid for 2010-2011 – a one-year loss of $8,579,467.District officials were stunned by the news. “This is devastating for Cherry Hill, and for public education throughout New Jersey,” said Dr. David Campbell, Superintendent of Schools.Details of the cut, which represents a 50% reduction from the 2009-2010 appropriation, came just one day before the Board of Education is scheduled to approve a preliminary budget. Districts must submit their budgets to the Executive County Superintendent for approval by March 22. The Public Hearing and Final Budget Adoption is scheduled for March 31 and the budget election will be held on April 20.In his budget address on March 16, Governor Christie promised school districts tools to help them deal with the state aid reductions; no tools came with the bad news.The district had forecast a 15% reduction in state aid based on directives from theCounty Superintendent. Just two weeks ago, school districts received a request from the DOE for the projected number of layoffs if state aid were held flat.The $8.5 million cut comes on top of the loss of $3.9 million in excess surplus and other reserve funds that the Governor confiscated to balance the state’s budget deficit in the current year.“The Board deliberately set aside those funds last spring to help us deal with the aid cuts we knew would be coming in 2010-2011,” noted Jim Devereaux, Assistant Superintendent, Business. Through budget meetings that began in January, district administrators have identified various scenarios of reductions. The worst-case scenario identified $12.2 million in reductions and a loss of about 175 positions. At a four-hour budget meeting last night, the Board came to agreement on $6.6 million in reductions and approximately 94 positions.Based on today’s news, an additional $6.1 million in cuts and/or revenue enhancements will need to be identified to close the gap created by the loss in state aid.Thursday’s special budget meeting will be held at Cherry Hill High School East and will begin at 7 pm.

before I judge another....

2010-03-12T16:28:00.002-05:00

I work in a retirement community. I work in the Human Resources department, and though I am extremely friendly, and try to be as non-threating as possible, I still have the aura of "big brother" around me.
I'm not apologizing for my job by saying I try to be non-threatning, but many of our employees come from other cultures, where authority figures don't always have their interest at heart.
I'm fortunate because departmental directors are wonderful here, and we play very ethically. If an employee is being disiplined or dismissed... they've earned that action.

any way... While we were doing our benefits this year, I spoke to a C.N.A I've been friendly with. I hired her, and she's always pleasent to chat with. During this converation, she asked if she could use her flex card for her son. I asked how old he was and she replied 22. I then asked if he was in college, which would still give him dependent status,. She shook her head no and whispered... autistic....
I looked at her, smiled and said my son also. I could see she was a little uncomfortable, so I didn't persue it further at this point.
About 2 weeks later I asked about her son, and she wrote on a piece of paper.. autistic...
I looked at it and said "I know, you told me earlier"
That night driving home, I felt sorry for her. She comes from a different country, and is autisim, or any disability, a sign of weakness there.... etc etc.
Then I thought, so many know and ask about my son... my goodness he's 4 already, yadda yadda yadda, yet few co-workers know that he's autistic. I have told more lately, but why not everyone?
Well... I wrote in an earlier post, which still holds true, I never want people to tilt their head, and ask sympathetically "How's Ben?" Ben is not my cross to bear, or someone to pity.
Also, I think I have to keep home at home sometimes. I can't let go and really get into it often. Those I do tell ask questions, and I answer, but sometimes it does make my eyes shine.
So.. who am I to judge why this woman chooses or chooses not to share.

sooooo damn nasty!

2010-03-05T14:58:00.003-05:00

A "typical" day in my life.
A read a blog from a mom who had been dealing with her daughter's sh*t for weeks. The child is 14, and not only is not potty trained, but finds spreading the love a fun activity.
I had sympathy. Ben's not nearly that bad, but again, he's not against dropping his pants wherever he is in our house, and planting a log on the floor. fortunately when he's done, he has no further interest in it. Wish I could say the same for the dog. I've had to scream more then once... half the time to no one in particular.... he's got a shit in his mouth!!!! ooooohhhh.
Well...... yesterday Ben and I went to ocupational therapy. Our routine is to get there, sign in, and immediately try to go to the bathroom. We do this, and Ben urinates, no problem. When we come out, he goes to play and our therapist immediatly walks over. I say "come on Ben!" and watch him start walking like a cowboy. hmmmmm.... I feel the back of his pants, and sure enough...
We go into the bathroom, and it's VERY loose bowels. While I'm trying to figure the best way to attack this problem, he's digging his hands in his pants.
I stand him on the toilet, try to take his pants down, and I've now desicrated the toilet and his socks. I'm holding him upside down, trying to get papertowels, and praying his ass doesn't hit me in the face. Did I mention I'm in a CROWDED waiting room bathroom?
I finally do get him cleaned up, always have a spare change of clothes, so he's as fresh as he's getting and off to therapy I go.
Later that same night....... I give Ben his bath, read his books, and he's off to sleep. I come downstairs and notice the dog, out back, rolling on the patio... All... isn't he cute... he must have an itch.
I bring him in, and notice he's wet around the neck and chest. One little detail.. we have a pond in the back of our house that the dog has become very interested in.
Once we come inside, I notice he smells. I'm talking to him as if waiting for a response asking what he's gotten into, etc.... I see what I think is a piece of mulch in the THICK hair around his neck. It's soft and slimy and definitly not mulch. It's the back fin of a fish he's dug out of the pond and rolled in. The fish carcass is embedded in his scruff fur. I start screaming I'm going to throw up, I'm going to throw up!!!1 Husband comes in, and dislodges as much of the carcass as possible, and there I am, 9:30pm, scrubbing the dog,
I finished scrubbing him, and am embarresed to admit... I drained the tub, and left it. Perhaps today that will be my only hurtle....????? YEAH RIGHT!!!!

2010-03-04T14:53:00.001-05:00

It's funny, as I go thru the day, each day, I think of scores of topics to use on this blog. Yet, by the time I'm going thru my blogs, I can't think of a single worthy thing to say. I have several blogs that I check on daily. They always seem so insightful and original... So I'll just give a couple of short takes. not a whole blog, just quick ideas.... My 18 year old told me he took and passed the GED. I found that hard to believe. He was never studious and hasn't been in school for a year and a half. I wasn't so unsure that I flat out called him on it, but I did let him know I was suprised. Out of curiousity for how hare/easy they make the test, I went to a sight that gives several demo questions for th eGED. I failed miserably. Grant it, and this is painful to say, I've been out of school for almost 25 years, but seriously it didn't look remotely familiar. Now I can flat out say b*llsh*t! Ben's birthday is in July. July 8th to be exact. I don't know how I feel about sending him to Kindergarten next year. My 18 year old also has a july birthday, and with him also I thought about waiting the extra year to give him time to mature. I asked a teacher, and she said, he'll be fine send him. So I went against my own caution and signed him up. After I did, she sought me out, and said she too had a summer baby, and if she could do it over agian would have held him back.... I spoke at Ben's last conference of wanting to hold him. It was not a warmly recieved notion. I was basically told that it's not done. My question was, is it not done because no one has ever done it, or is there a law/written rule forbidding it. Well needless to say that don't prohibit you from doing it. You'd have to apeal, but it could happen.
Indecision.. and why does every decision feel like the most important one... decision du jour... nah I'll just have dessertt

autism.. or just plain naughty

2010-02-16T13:22:00.002-05:00

I can't decide. Ben.....
Ben has taken to dropping his pants wherever he may be in the house and peeing on the carpet, etc. The house is his litter box. Now.. he knows he doesn't want to be wet, and he has to go. Is he being naughty.. or autism
It's a daily struggle I'm going thru on how to handle his behaviours and quirks. I really wonder if I'm giving him credit for knowing exactly what he's doing, and just being louzy at discipline.
I really do believe children do best with boundries and expectations. I SUCKED at that with my older two and they're currently paying the price. I constantly strived for peace. It was a tough situation with two CONSTANT teenage boys. If it wasn't one, it was the other, and how I made it through I don't know. They still haven't made it through. The older one is working two menial jobs and lives in FL. He sounds pretty happy, and he's just cruising through life. He turned 21 on Monday, and I have to remind him that at 21 cruising through life is acceptable, but he's only going to blink and be 30. Where does he want to be then?
The 18 yr old...... sigh.... I can't explain him. He's his own worst enemy. He has decided to take on a persona, and it's not a good one. He is actually a person that no one wants to be around. You can treat him with kindness, he'll see weakness. Have patience... he'll dig and dig and dig until he gets you. We had to ask him to leave.
He has gone to and been asked to leave:
both of his grandmothers houses
I sent him to FL where he wanted to be with his brother. I set him up with a roomate who works and goes to school. bascially never there. Told him I'd pay his first 3 months rent, and he just had to get a job. Within the first month, he did damage to the guys house, and was asked/told to leave.
He went to an establishment known as covenenant house. They take in teens, teach them life skills, and help them get an apartment/job/etc. He lasted 5 days. This is a place that is used to dealting with difficult kids.... 5 days.
He's now back in PA and I don't know where he goes from here. I know that everything he's doing he's pushing everyone further and further away. I know he needs something, but for the life of me.. I don't know what.
And then.. back to Ben. To know/suspect, that Ben will never have that "typical" life we all hope for our kids. It's a wonder I bother to get out of bed in the morning.
tired...tired...tired...
But, then he'll look at me, smile, close his eyes and give me a kiss..... ahhhhhhh

If you pray

2010-01-27T09:20:00.002-05:00

I'm not very religious. I envy more then most can imagine those who have a solid faith. It'snot that I don't believe, I just don't have the conviction to religion many others have.
If you do, or even if you don't....
Take a minute, visit this site, and please say a prayer....
http://emmadunnam.blogspot.com/

My normal confronted.. a few times

2010-01-22T12:17:00.002-05:00

The whole family was off yesterday. Ben had an appointment at the seating clinic at Childrens Hospital. Ben is very mobile, yet refuses to walk EVAH out in public. We're able to carry him now.. but that time is limited.
We get there, and meet with a PT and vendor for the coaches. They roll it in, and it just plain looks medicinal. It's 1/2 wheelchair, and 1/2 stroller. YUCK!!!!! I ask the vendor if they have anything else. Crazy question? He returns with "This isn't Baby's R Us with the selection". Now... I'm at Children's with a purpose, so this asshole isn't going to get me started. The price you ask?.... $1,600..... WHAT!!!! We're told that many people who have children with mobility issues are being denied by insurance. Interestingly enough, we've always been thrilled with our insurance, and don't expect any issue. Who'd think Ben running into the river last week would be so timely. We used that example of why he needs restraint and... that's a pretty good one. Our insurance asks for a 10% copay. That's $160.00. Doable. Those who have benefits through my work pay 50% of durable equipment. That's 800.00 and change. WOW! and how about those that have children that simply are not mobile. What the HELL!
Last night, after children's, I went to the Home Show with my husband and Ben. We got there right at opening (4pm), We walked the aisles, and Brent squeeled quietly every now and then.
It was one of those times where I knew what I saw as normal, others didn't. How many vendors made an extra fuss over Ben. He recieved many of their trinkets, brochures, and even had an offer to go to work for a man. Of course while all this is going on, Ben never acknowledged a single one of them. I knew they could see he was different, and they were being extra nice. I friggin hated it! As soon as someone would start in, I'd look down and away from the vendors to see what was catching people attention. Low and Behold, there's be Ben, flapping, babbling, having what is refered by another mother as "a puppet hand". That description was perfect for what Ben does, so if your child has a puppet hand. you know.
I do know that the public being extra nice, supportative, sweet to Ben shows the world is full of compassion, caring, and generally good people. I just don't want it to have to be for Ben. Leave me alone!!!!
At the end, we were passing a stand where a woman was selling Discovery Toys. Brent stopped to show Ben a ball maze. The woman 55+ or so, begins her selling and then says, "your son is specail needs". I didn't want to reply. I hated thinking that in 3 minutes she could see he wasn't "typical". Can't everyone just leave me and my normal alone.
I answered "yes"... slowely.... and she procedded to tell my husband that her 2nd son was on the Aspbergers spectrum. I KNOW I should have then talked to her like an extended family. She's been there..... but I didn't. I accepted the brochure, and walked away.

Of course when I sleep on it, and step away for a moment, I'm able to relate to my mother some semblence of the story. She tells me of course he stood out. He's gorgous and high energy. Of course everyone would notice him..... to be that blissfully blind.....ahhhhhh

things you never hear yourself saying

2010-01-18T14:47:00.002-05:00

I went swimming, in a creek, in January, in PA. Go figure.

Day started off nice enough. I took Ben to the park, which he absolutly ASTOUNDED me by pedaling his new bike the whole way there. I steered, but he absolutly pedaled.
Funny, he did not want to wear his helmet. Thankfully dad lets go with " Helmet... so we can be safe". His hero Diego says this, and bam... no argument, just puts on the helmet.
After the park, we decide to take the dog to the dog park. We were all having fun, but because I've become a huge nerve all the time, I start to worry about ben around dogs, and looking them in the eye... whatever. I tell Brent I'm going to take Ben to throw rocks in the water,
I get down a little drop, and can tell it's muddy. I sit ben on a log, and turn for the famous second to pick up a rock to hand him. That quick... and I mean quick, he's taking off for the water. Now... he's 40lbs, and sinks some into the mud.... but he's quickly starting to hit the water. I'm not going to tell you how many times his weight I am, but he's up to his ankles, when I jump after him, and am in mid-thigh mud, I grab for him once..miss... second time I get his hood, which proceeds to unsnap... third time a charm. Well, now I'm wet, muddy, and have pulled a thigh muscle from forward motion being brutally stopped by muck. To top it off, it's a very public area, and I have a women across the creak horrified watching.
Ben is completely unmoved by the situation, instead accentuating the positive. He's sure he's now going to get a shower.
I call to my husband (who's chatting it up on a park bench with some lady) Brent.... we have to go now..... He thinks Ben has had an accident till he rounds the car and sees me wet and muddy from head to toe.... his words... "Oh my".. priceless.

when he's busy... we're all busy

2010-01-13T10:02:00.002-05:00

Well.... Ben has picked up a new past time. It involves plumbing.
On Saturday, my husband discovered our downstairs bathroom not flushing. Of course the fact that Ben's been enjoying throwing a variety of objects into the toilet and trying to flush them, we weren't overly suprised. This one was tricky though... just the right size to make it down the drain, but get caught in the elbos.
Brent took off the toilet (all those home improvement books at work) and off to the Home Depot. While we're there, we decide our blue paint, hideous border, and ripped up floor could "easily" be replaced during this repair. Of course the fact we decide to do this renovation at 1pm on Saturday, already promising to go to my mothers house for dinner.... what the hell!
Well.... long story short. The bathroom is small, and only Brent could work comfortably (at least that's what I told him).. low and behold by Sunday night... fresh paint, fresh floor,.... just have to get that toilet back on.
Brent's sitting in the middle of our den, with a flashlight peering in the toilets intricite ins/outs.
He asks me to shake the toilet... I do... the seat and lid come down on his fingers. He's still keeping a positive outlook.
Ben steals his flashlight and runs.... Ben comes running back into the room with scissors (how cliche right!). I take them away, yell at Brent for leaving them around, Ben flies past us again with his plastic scissors.
Long story short (I know, too late) Brent whines he really needs his flashlight. I begin looking... nowhere to be found...when suddenly.... I look in the sewer pipe left open by the missing toilet. voila! I then get to reach into the golden pipe and retrieve the light and scissors. Don't you wonder what got away?
The next day driving home, I'm reinforcing that good boys don't throw/flush things in the toilet, and Bens a good boy right!!!!
Well... That evening he stayed away from the toilet, instead jamming 15 Q-Tips down our sink.

Thank God we've been smited with a sick sense of humor. Some how we laugh at it.

ahhhh the holidays

2009-12-31T10:41:00.002-05:00

When I look around blog land, it seems a lot of us have been taking some time off. I doubt many are relaxing, because it seems to be the rule.. you need a vacation, after your vacation.
Christmas in the Levin house was fun and festive. My oldest son living in Fl, returned for the holidays. His gift was the ticket (that's so I could be sure it was round-trip)(lol).
Santa was good to Ben. He got his first bicycle. Santa shopped at the neighborhood bike store. I like to give buisness to the little guy, and the shop does contribute a lot to causes.
Do you think the bike was the big oooohhhhh? No. The cheap $20.00 guitar is currently be coveted.
Ben likes to pass it to his father and me to play and sing. Neither of us can play, and trust me... neither of us can sing either! Yet... To Ben we might as well be playing Carnegie Hall.
The day after Christmas we went for a family breakfast at my brothers. They have 7 year old twins, a dog and were babysitting a dog. Ben does thrive in Chaos. Another thing we're lucky about. He can handle activity, noise, and non-routine activities. He took root, and after 5 hours when we were ready to go, had to drag him out without his coat or shoes. sigh... I'm exhausted!
Any plans for tonight you ask? Hell no! It almost annoys me I have to traditionally stay up until 12. We're typically lights off at 10:30.
We go to another party at my brothers tomorow. This is friends and family, so I'll have to keep a real eye out for Ben.
My sister-in-laws family travel with their dogs. That's a minimum of 3 dogs, 800 kids and 40 adults... (ok, i exagerate with the kids #, but if you were within 2miles, you'd swear there was 800 kids too!!!)
Happy New Year to all! And I hope that "special" wish comes true for everyone!!!!!

Karma, ying and yang, or Poetic Justice

2009-12-15T14:16:00.005-05:00

There are things we are taught as youngsters that stick with us. Traits that are unbecoming.

Pride - I was prideful. It all began Thursday. I polished my furniture, windexed my windows, vacuamed and swept my floors. My house was looking good.... I was full of Pride. I swear I wasn't done putting the dining chairs back when I thought...huh... the dog and Ben are awlfully quiet. Ben was in my jewelry box, and Fletcher had "found" an entire sleeve of ritz crackers that he was eating in the den. When he saw me coming, he took off like a bat out of hell and ran through the living room and dining room trailing pieces behind him. I left the crumbs for 2 days.

Gluttony - I was at a b-day party on Sunday. I had taken a piece of cake and wasn't able to eat it do to Ben being on the move. I asked the hostess for a piece of plastic wrap, and she in turn carved a hunk of cake and wrapped it all up. I was looking forward to a BIG piece now. Got home, set it on the toaster, on the back of my counter. 15 minutes later, came to get Ben's milk and laughingly asked the dog "what are you doing". He turned and gave me a full frontal of a snout smeared with icing..... Damn it!

Pride cam back - Ok, I'm not talking to my husband. When I get mad I clean. If you were to come to my house, you'd assume I'm in a pretty good mood most of the time... heheheh. I scrubbed, scoured and generally cleaned every surface of my house. I bragged to friends and co-workers my house hasn't been this clean since the day I moved in. Yesterday Ben came home from school, dropped off his clothes as he walked and proceeded to pee on the bathroom door, floor, and rug. This is while I'm looking at total desecretion of the toilet paper the dog spent the day tearing up, as well as continuing to eat my faux tile floor. The house is back to normal

I still kissed Ben goodnight, and Fletcher got his nightly treat..... I'm still not talking to my husband....Somebody's got to pay LOL

Raymoor & Flannigan

2009-12-09T14:07:00.002-05:00

Ben added two more things to his resume yesterday. While at school, he looked at his aid and saide"We have to go to the bathroom". She bought him in, and he did his business right away. Go Ben!
Later at home, he was jabbering, much of what I didn't understand before looking straight at me and saying "Raymoore and Flannigan". I don't know if they're a national store, but around my way it's a furniture store. Don't ask me how that caught his attention but.... ok
Yesterday was a stressful day. My older sons have been causing me mucho grey hair, and it doesn't look like I'll be getting any letup any time soon.
I'm completely stressed yesterday when I get to the daycare.... dummmdummdummmm (scary music). The owner/manager/who knows at the front starts wtih, can anyone from the school, county, state, etc.... come to the school to give them tips on dealing with Ben.
Ben is there typically from 3:30p-5:40p. Two and I'm going to say it FUCKING hours. I've had to have meetings with the two 19 year old girls, have them patronizing look at me everyday and exclaim, "We've had a pretty good day". He gets there, they're supposed to either go outside at 4 or into the makebelieve land they have(which sold me on the place) for a 1/2 hour. That takes us to 4:30. Are they really trying to make me believe that for 1 hour (while many kids are being picked up) Ben is that big of a handfull?????? Why can't I see it!!!!!
Ben does seem happy to go there, and I hate the thought of changing him again (though he is good with change) I pay 800 bucks a month, about 20.00 an hour.... Can't you just DEAL WITH IT and make him happy????
I hesitate to have someone come to my house. I'm afraid they'll sit him in front of the TV, what if they're late and the bus gets there, blah blah blah. I like the fact there's additional children for him to play with and learn from. Even if nobody notices him watching, I'm sure some of their play must get thru to him......

WAAAAAAAHHHHH...... That's what I felt like yesterday..... WAAAAAHHHHH
And not a drop of liquor in the house... maybe that was a good thing

a question

2009-12-02T15:48:00.003-05:00

Here's a question. Have you ever found yourself enjoying the time you spend with your dog more rewarding then the time you spend with your kids. I'm not just including Ben, but the older boys also.
The dog appreciates you for what you do. He wants me to be involved with him, pet him, and never would complain "meatloaf again? He actually wants to make me happy, and at least bothers to fake feeling bad when I'm annoyed with him. Does it make me a bad person to need some form of validation for the daily crap I do!!!!
I'm just begining to feel a sting when Ben ignores every word out of my mouth.
Ben... come here please and get dried off. I know he hears me, and responds when its good for him. HAd I said "Get dressed for Chucky Cheese, you would have thought he was struck by lightning he would have moved so fast....That's probably some of the tough acceptance I go through. Whats on purpose and just plain ignoring me, and what can't be helped?
Why will he respond when the incentive is what he wants, but you'd think he was deaf when he's not interested.
Ben has also lately taken to pinching, slapping, and gave one hell of a bite to me the other night. This mainly takes place when I have him sitting on the potty. He's doing well with it, but never self initiates. I guess when he doesn't have to go, he's iritated, and has begun lashing out.
How does anyone discipline their autistic child? Before, we used to just redirect him, but there's no where to go when he's sitting on the pot. And after a pinch or slap, should I really ignore it and redirect>? Every parents experience... just not knowing.

Firsts

2009-11-19T07:53:00.003-05:00

Today will be Ben's first day of outside OT. We have an appointment at the Weisman Center today. Ben will have his initial consultation, and then from here out OT every Thursday at 5:00. We're trying to get speach (which is our #1 concern), but it appears it's a busy little place and we're on a waiting list. The hard part for them to schedule is, we'd like back to back therapy's. Our insurance is fantastic! we get 90 therapy days per year. if to the two therapys are back to back on the same day, it still only counts as one day.
To be able to do this (get out of work 2 hours early) it makes sense I come in two hours early. I had to soft sell this to my boss. She really is very accomodating, and I work at a retirement community in HR. I was able to soft sell this as being available for the 11-7 shift once a week would be good pr for the department.
I HATE GETTING UP EARLY. 5AM is early enough, but the puppy decided he was done sleeping at 4AM. For some ungodly reason, Brent and I want him to sleep in bed with us. half the time he gets off the bed on the floor, so I'm not sure why we don't just put him in our bathroom like we had been. He wakes up and licks my face, and then to top it off.... ate my cell phone. Yup.. there it was... dented, screen cracked, you name it.
Well, my hope for tonight is, this will seem like more fun then work to ben. With his long days at school and daycare I don't want to fry him. OT typically is a "fun" time with various sensory activities etc, so I'll let you know.
Tomorow I have Ben's school conference... which as I mentioned in a previous post his teacher was expecting a baby... got the notice last night she went a month early and delivered yesterday. Good for her she's as sweet as could be. Fortunatley Ben's typically a smooth transitioner so I don't forsee any problems with him and a substitute.
till then.......

ebb and flow

2009-11-16T09:42:00.002-05:00

I was pretty down last week. I was overwhelmed with a variety of issues. Nothing in my life seemed stable, with the exception of work.
Fighting the traffic, to get home and live in a bathroom, make a dinner, care for a dog.. too much
I wasn't speaking to my husband. The last words I said to him for 4 days was probably enough to hold him.
My other two boys are much older then Ben. they're 20 and 18. If you've ever heard the saying little kids, little problems, bigger kids, bigger problems.. Know that someone with experience uttered them first.

Then the weekend came. What I had been dreading. Well, it was actually better then I could have hoped.
Ben did EXCELLENT with his potty training. 2 accidents on Sat and a couple on Sun. We did not stay prisoners in the house as we had expected, just had Ben use MANY public potties. He went at Wegmans, Target, Friendly's, Starbucks, McDonalds.... why not get him used to variety?
The best fun I had with this experience is, Brent, Ben, Fletcher (dog) and I went to Haddonfield. Brent took Ben into Starbucks to "try" Well...... there was a BM waiting for Brent. He gets off Bens underwear and sits him on the pot to pee. He does, but that's after spreading his crap all over the toilet seat. When he's done, Brent is conscientiously cleaning it up, with Ben turning off the light every 10 seconds. Sooooo glad I was sitting on a park bench outside in 70 degree weather wondering what the hell was taking so long!
Ben is also very smart. With one of his accidents he removed his pants and underwear and hid them behind our recliner. If I don't see them, I don't know he went in his pants. Also, everytime he uses the potty his father or I will say "High Five!" If he doesn't feel like sitting he'll start yelling out "High Five!" with the hopes we'll be distracted and just let him down.
Gotta love that kid!

Last night was open arms at the NJ Discovery Museaum. I night for autistic kids and their families. We had a great time. Staff was great, the activities are fun, and it was free!. It's 10 minutes from our house, and we've been there 2 other times. Funny thing, each time we go, a new activity becomes a favorite. I had an interesting thought (at least to me), that last night I almost felt a little sorry for the higher functioning kids. The kids you couldn't really tell if they had an issue, and when they "acted out" didn't recieve the kindly smiles from the other parents, but the look like "is he picking on my kid". Now quite honestly, maybe some of the kids were just brats, but since I wasn't sure.... I packed my big bag of patience and rolled with all.

he cried

2009-11-10T10:13:00.000-05:00

I have the distinct downfall of being the mother who just wants everybody to be happy. It doesn't work. Life is not all apple pie and roses, and when you try to create that environment, you set your kids up to be miserable. (as well as feel like your having a stroke 16 hours of the day)
I read the best blog yesterday that couldn't have come at a better time. It was on diary of a mom; http://jesswilson.wordpress.com/
It talks about a mom who at the time didn't understand why her child was crying, decided she was just throwing a tantrum,and later, when the autism was diagnosed the horrible guilt she had for disciplining her.
I can't say I've had that experience. I can't think of a time I ever thought Ben needed "discipline". We redirected him, and that always seemed to work. not bragging, he just was an easy kid. Lately he has taken to scratching and pinching us, which we stop him from doing. 1/2 the time he'll say when he's mad "don't pinch me" and if he says that, he won't pinch us... so he knows....
Well, potty training makes Ben cry. He doesn't like to sit there for 10 minutes. I have books, and his flashing toothbrush, etch a sketch, blah blah blah. When he has an accident, and we have to go to where the accident happened, then pull down wet pants, sit on the potty, pull up wet pants and go back to the scene of the accident FIVE times, he cries. I hate it.
My two saving graces was the post yesterday where the child showed the mother she understood the mother was sorry, and forgave her.
Additionally, the potty training steps say "this is not a fun time for the child" let me know, I'm not alone, and kids get thru it and over it.

update

2009-11-09T12:52:00.000-05:00

Well, Ben's been in school for 3 and 1/2 hours. He's wet himself three times, soaked his shoes, and doesn't seem to care even a little. I told the school there's a second bag of clothes to go to after-care if they need it.
Isn't it wonderful already!!!

I know, keep your eyes on the prize. 80 dollars (at least) savings in diapers...and a big boy!

P-Day

2009-11-09T09:48:00.001-05:00

Today is the day! we start potty training. Ben has scads of Yo Gabba Gabba underwear, Diego, Wonder Pets, and a six pack of Titey-Whitey's thrown in for good measure.
Well.... we throw him into a pair of Turtle Tucks.. Do our every 5 minute dry checks, and on the half hour, take him into the bathroom to sit for 10 minutes.
We're 4 minutes into it, and he wants to get up. No shock there. I'm holding him on the potty, trying to explain (haha) and he grabs ahold of the toilet lid. I try to scootch him back onto the potty, when he slips, dragging the toilet lid, and it slams him in the mouth. What a positive way to start the day!!!
He stayed dry the whole morning, which means he's going to pee and shit himself on the bus. I have no doubt, they don't pay those bus drivers enough.
It's Monday, I'm already tired, and after work, I have HELL to go home to. try to make dinner, and keep Ben dry.
The positive is, the other parents say it's not nearly as hard as they expected. Dare I hope?

Swine!

2009-10-29T10:56:00.000-04:00

Anyone else on permanant Swine Flu alert. A couple of weeks ago, whenever Brent and I heard someone cough or sneeze, we'd look at each other and kiddingly say "Swine". Good fun...
Since then, I've heard of 5-6 people who actually have it... now there's a little cynicism in our "Swine" comments....
I've had an appt. at my pediatrician for about a month now to get Ben his regular flu shot on Wednesday. I've continued to call each week, as instructed by my pediatrician, to see when they'll get the H1N1 vaccine.
As tasked, I called again yesterday. Good news, it's in. I asked to have it tacked on to Ben's reg. flu shot for Wed. That's when they inform me, they're out of the reg. flu shot..... insert sound of head exploding... I then ask, if they're out of that, are they going to still have the H1N1 when I get there. They tell me to call 1-2 days before my appt to make sure.
Now I go on to tell them Ben goes to 2 schools. He's at the early learning center in the AM, and goes to daycare in the PM. 2x exposed to children....they still tell me "no sooner appts available." The worst part is, it's this young, pleasant, polite receptionist on the phone, so I can't even work up a good bitch. I hate that!!!
The state of NJ says all it's kids need the flu vaccine prior to Dec something or they can't come back to school. So.... I'll spend the next who knows how long trying to get the vaccinee, and then hoping they honor my appt.
By the way, I do love my pediatrician, so....onward

Does this mean I'm grounded?

2009-10-27T13:50:00.000-04:00

We recieved the big news that Ben's potty training will begin the week of the 9th. The teacher asked us to review the procedure so we're all on the same page. I guess my only question is... are we grounded until he gets the whole idea of the potty? The procedure says that when Ben is going to the bathroom, without being taken, begin taking him out in public with a full bladder. Take him right to those filthy public toilets... bllaaahhhh... and get him used to going out of the house also....
We are NEVER home during the weekends... I don't know how we'll do it. We'll all be climbing the walls!
on the bright side, I was able to find my FIVE dollar sweat pants this weekend! Let's hear it for Kohl's. They truly are the best store out there. Nice quality clothes for the cheapest prices! We got Ben 3 pairs of pants, 2 shirts, and a 6 pack of socks for 31.00.... Baby Gap can kiss my Ass!
My mother bought Ben 4 pairs of pants and 3 shirts. We figured we're going to be deluged in urine... (expect the worst, embrace the best!)
While each morning Ben is happy to get onto the toilet, he consistantly pees on his legs. When I try to "push it down" he cuts the flow, and waits me out. I've even started laying a towel down in front of the pot and trying to let him get the flow going.... when you go so far there's no stopping, but my timinig just isn't there yet....
(What we're reduced to after having childre....)

"everybody's working for the weekend"

2009-10-22T16:37:00.000-04:00

Ben loves the weekend. It's funny, at 4 what stresses does he feel the need to escape. Cramp in your finer painting finger? HA
Ben doesn't speak much, so to find out many things he uses cues. His biggest cue, is if my hair is wet in the morning, it's a school/work day. Dry and bushy and he's home free.
Typically, 9 times out of 10 I have to wake Ben during the week, weekends... he's the waker.
This morning he woke first. I hear him babbling away happy to himseld... I walk into the bedroom (with my wet hair).. he takes one look at me, shouts "WHAT!" and throws the blanket over his head.
It was one of those times when one word said it all.. and I let him know I feel the same way baby!

bang head here

2009-10-19T10:30:00.000-04:00

Thank god it's Monday. Words you never want to have to say...

Anyone who lives in the Northeast could tell you it was a nasty weekend. Wet, chilly, cloudy. Yuck! Doesn't give a lot of opportunity to run a 5 month old puppy or a 4 year old sensory seaking preschooler. So.... we tried to make due!

Saturday, I was able to get the canine child out for a walk in the AM. Thank god there was a brief break. Brent didn't think it was a good idea to take Ben. Thought it was too chilly and ben's been fighting "something" for a week now.
When I got back from the walk we went to the Moorestown Mall. Had lunch at the foodcourt and Ben thru a bucks worth of pennies into the fountain. Kept him quiet and happy, so lunch was a positive. afterward, Ben ran (he knows his malls) to the skatepark they have in the mall. It really is pretty cool. They have all kinds of ramps, benches, railings, that the kids ride, hop, and damn near kill themselve on. (Bens just a watcher) They fall down, jump up, and try it again. Age made itself known with Brent and I acknowledging we'd be out of work a month if we took a single fall like them. Ahhhh fleeting youth.
We then went to Boscov's. I am cheap! I wanted to find sweatpants for Ben, and I was willing to spend $5 for them. Impossible you say????? welll you'd be right. We came home with nothing, which I then regretted, because they did have for $10 and they probably were worth it. Oh well.
We took a nap on Sat, for 2 hours. Again age pinched me on the ass because I didn't sleep well Sat night. It was only moments ago I could sleep 10 hours, nap and fall back to sleep with no issue.
Sunday, we went to 2 supermarkets and target. We had let the fridge, freezer, and pantry get down to nothing.... we spent over $300.00 making up for this, and that freaking hurt too.
On the way home Ben was sitting in the backseat. He said (nonverbal child that he is)" We'll go to PJ's and swim in his pool". I LOVE to reward communication, but when it's 45 degrees and the pool is closed.... not much I can do. I took him home, made a pot of lentil soup and cookies. He was still itching for some water, so I let him go in the shower. He took a 20 minute shower, got out, dried off, and conned his father into giving him a bath. (how? I can't get him to take something out of the freezer for dinner?) Well Ben is BIG drinker of bath water. He gets out and decides he doesn't want to wear his diaper..... Brent was letting him play in the play room upstairs....After the 3rd time he peed on the floor in the space of 20 minutes I had to send Brent (who NEVER gets annoyed or short with Ben) (Till the 3rd pee) out to smoke.
Ben still refused to wear his diaper but did pee on the potty.
Bens school will begin potty training in Nov. They have another child they're working with now, so I guess it's one at a time. I let them know we're ready when they are, so they sent home the procedure/process for potty trainng and autistic child. I started putting some of it to work (checks every 5 minutes etc) and we did get 2 more pees on the potty. I love that Ben is obviously proud of himself and recognizes how proud we are of him. He's so in there...
To reward him... what else.... Chuck E Cheese... how I hate that rat!
Glad it's Monday.

If anyone would like me to copy the procedure I have for autistic potty training here, please let me know. I would love to share with someone if they need it. I know I would have no idea if my sons teacher didn't send it home.....

A Mans World

2009-10-16T14:24:00.000-04:00

I am so tired! Thank god it's the weekend.

It's a man's world. I wake up every day at 5:40 to walk/feed/water the dog. I pour Brents coffee and wake him in bed at 6:40.
I get my shower while he enjoys his coffee in bed, go up and get Ben up and dressed, bring him down and get his banana/donut/toast whatever.... BUT then brent moves. It's time for him to make the lunches.... Do you have any idea the procedure he makes out of it. How can it take 15 minutes to make 3 of the same sandwiches?????
I'm in the kitchen getting Bens fruit, cookies, juices, let the dog out again, brush my hair, put on my shoes, etc, etc.... until he's FINALLY done.
At night, I RUSH home to get Ben from daycare, run in the house to let the dog out, run to get the dinner started..... eat.... get ben bathed, read to and into bed.
I complained 3 weeks ago that I felt put upon. Why am I doing everything and he's watching me.. I think if he offered to do any of the above mentioned once a week it would be appreciated. After I complained he told me to make a schedule. I never did, and yet you'd think he'd of offered to do the above even ONCE. HA! there's one born every minute. TIRED!!!!
I've complained to friends and co-workers and hear the same thing.... DON'T DARE start doing it. It truly is easier sometimes to do things yourself and not rely on anyone else.
I'm extremely bitchy when it comes time to having to follow someone elses agenda. It is a downfall. The older I get, the less patients I have. It's obvious and not something I can deny. (this goes for everyone but Ben) (I have the patients of a saint with Ben)

Well, I've bitched, and feel someone better.... now I just have to make it thru Chucky Cheese again tonight.....FART!!!!

To Potty Train or not to Potty Train...That is the question

2009-10-13T11:36:00.000-04:00

To Potty Train or not to Potty Train...That is the question. Says it all. Ben turned 4 in July, and we're begining to think about the whole next step.
Ben typically wakes up dry. The last week I've been putting him on the potty as soon as he wakes up, and he's been blessing the potty. Of course he does this after he's asked "donut?" and been assured his efforts will be rewarded. He pees and takes off down stairs with clothes to get the donut. I don't want his teeth to rot or fill up on crap, so I'm going to have to come up with a different reward for the long haul...
I saw another mom of bens classmates and she told me they're getting ready to start also. She told us the teacher sent home a paper with the multi-step procedure to autistic potty training. On the bright side she's only heard positive results from other parents.
I wonder if it's sheer laziness, or the unknown that's making me dread it. To be brutaly honest... diapers are easy! we can travel long stretches at a time, never have to take him into those public restrooms where all you do is shout "Don't touch that... dirty!"
But.... I think it's time. I do get a kick out of the whole take your child to the potty every 30 minutes and have them sit 10-20 minutes. When do I pee?
Other then that... I think Ben has seasonal allergies. He woke up this morning with chest congestion. It sounded like sh*t! All I kept thinking was "SWINE!" My mother says I'm obsessed, which would be hard to believe. Typically I'm unable to hold a thought long enough to become obsessed with it so.... He did get up, ate (said donut) and was in good spirits, so I tilt towards allergies rather then sick.
Any potty training tips/rewards/advice would be greatly appreciated.

Jacquie

opinions are like *ssholes

2009-10-09T10:54:00.000-04:00

I just spent 20 minutes writing a long post. hit publish and voila.... gone.
Now you all will get the short story.

Went to back to school last night, and left my mother, mother-in-law, and grandmother to take care of Ben.

Came home, brents mom is gone, and my mom is going off! Come to hear, brents mother is saying we completely neglect ben, and brents two sisters are so disgusted they won't talk about it anymore. All we do is sit him in front of the TV.

Think I got mad... wrong... she's been such an asshole so many times I just nodded and sat down to cold spaghetti and meatballs.

Brent calls one sister (denial) she calls the other sister (denial) and that one calls the mother to ream her.

Either way, I'll no longer be dealing with the mother-in-law, and probably as little as possible with the sister-in-laws. (In my book your guilty until proven innocent)

All this in 1.5 hours of being out of the house. no wonder we all always travel together.

2009-10-09T10:38:00.000-04:00

Ain't it the Way.....

2009-10-08T15:42:00.000-04:00

Went to the dentist last night expecting a cleaning. Turns out he gave me a root canal...

Sounds like the begining of a really bad country song doesn't it? Well it's true. Not only did I get suprised with it, but it hurts like h*ll! I had one before, and unless root canal is like labor and you "forget" the pain, the last one didn't hurt. I'm begining to lack confidence in my dentist. He's a nice guy and I like going to him.... but.....

My Benjamin went peeps on the potty this morning!!! What a wonderful way to start the day. He's gone a couple of times, a long while ago, but this morning he woke up dry (which he usually does) and I figured why not?
I offered Ben a donut if he made a little peep for me.... voila.... I can't tell you it wasnt' mainly off the seat and onto the floor, but really who gives a hoot. Just let get him used to it! Then even scammed Daddy into going out for the bananana.

Back to school night tonight. Get to meet Bens new teacher and his aids. I met the teacher before for about a 1/2 hour, but not the aids.

Bens teacher from last year is gone on Maternaty leave. We go to school to meet this new teacher and what do you think... pregnant...
She spent a good amount of time apologizing. Not how we would have hoped, but... we wish her the best.

I'll let you know how brilliant ben is tomorow.... or how blind his teachers are not to see how brilliant he is... either way....

damn that chucky cheese to hell!

2009-10-07T13:01:00.000-04:00

Well.... The last two nights ben has been looking at us, grabbing our cheeks and holding our heads still while he gazes puposefully into our eyes. The whole time repeating over and over..."Chucky EESSESS??"
Needless to say the word no is not what he's hoping/expecting/tolerating. That's probably the danger of constanly rewarding him for his vocalizations. Whenever has asks for something I do try my hardest to honor it, in an effort to show him how asking and communicating are beneficial to him. Of course most of his vocalization is "Donut, hamburger, pizza"... you get the drift.

So you ever think about the future? That is one scary thing. I still see Ben as a baby/little boy. My husband and I refer to him as "the baby". See the disfunction working here LOL. Well, much of what he does now is relatively easy to control, redirect.... but he's begining...... begining to get a little bigger where picking him up is more difficult.... dealing with him angry.. a little harder.
I think I fear the future BIG TIME!
I've found a website of a mother with a 18/19 yr old autistic boy. I started reading her posts from 2007. I haven't caught up to her present yet. 2007 is dealing with her and her husband deciding whether or not to find housing for their son. He became aggressive and intimidating. How can I bear to even think this could be my reality in the future?
What was her child like? I think I read he was a happy guy, but that can't be........
Her blog is interesting, if you're interested it's http://susansenator.com/blog/index.html

I'm going to live in the present as much as possible. I'm going to enjoy these days of Chucky Cheese being the silver lining, and pick Ben up as much as possible..... before that icky "future" crap comes up and bites me on the *ss.

It's his world... I'm just living in it

2009-10-06T15:26:00.000-04:00

We went to Chucky Cheese this weekend.... TWICE.....
Friday night I had to drop my car off at the dealership. It's 4 months old, and the blessed wildlife had decided to chew the wires that operate the entire right side lighting of my car. Cost 240.00 and I swear they just used electircal tape. The car dealership is in the direction.. no, not right next door to, but the direction of my sister-in-laws house. Her house has a pool, and guess who is OBSSESED with swimming. you got it!
He was having quite the fit at not going, so I bribed him with Chucky Cheese. I'm not proud, but I'm not completely embarresed either. I just love to see the little guy happy!
Saturday night we had a gift certficate to Red Lobster, so why not? Guess what. It's in the same complex as....Chucky Cheese. He started to have a fit going in to dinner, and we were dreading it, but he relaxed quickly, enjoyed the atmosphere (not a bite eaten) til the bitter end. As Ben and I got up to go outside, he said the dreaded words... Chucky Cheeses! and off we went.... Turns out it wasn't so bad. Brent had himself a good ole time (Bens dad) He played soccer, had a sketch of himself done... made the most of it!
Sunday we went to a pumpkin festival. Rides, petting zoo, pony rides, all that good stuff. Needless to say, we were outside all weekend long, and not a stitch of cleaning got done. Our immune systems will thank me for it one day!
I did get to make 4 doz cookies, and 4 loads of laundry, so all was not lost.

How do you know if you're right?

2009-09-30T10:35:00.000-04:00

So in a previous post I discussed that most of what I do, I do because I think I'm right. That still goes.
I've been wondering lately if I really am or not.
Ben is a very happy guy. I know that we are blessed in so many areas with him. Every night that I read him his books, and he snuggles right down to sleep peacefully thru the night.. Each night, I know we're lucky. I've heard other mothers in Bens school say how their children just don't sleep.
Each night Ben eats a healthy, and somewhat variable dinner, I know we're lucky. Other children are still on puree in his class.
My Ben laughs and takes complete joy in his world more often then not. We're lucky.
Now.... I attribute Ben's happiness and ability to be flexible with his father and I. Sorta along the way of God gave us the child we were intended to have, and gave Ben the parents he needed. (arrogant huh?) Lately I've been wondering if I've been putting too much enfesses on his happiness, and not enough into his improvement. Ben comes home from school/daycare and jumps into my bed to watch a couple "Diego" episodes. This is great for me, giving me time to get changed/dinner started/ dog out/ a cup of coffee. My rationale is he has LONG days. He's picked up on the bus at 8:30A.... goes to school until 2:30, gets bussed to daycare, and then I pick him up at 5:45. That's a long day for a little kid.
All the while in the back of my head I'm hearing "turn off the tv, let him help with dinner, talk to him, talk to him, talk to him.
Ben can have a fit when he doesn't get his way. (takes after me). I usually will just ride it out, talk to him quietly, divert his attention. This works (sometimes it takes a while but eh...). At dinner on Monday Night Ben ran out my sister-in-laws back door trying to get to the pool. My husband had had it, and yelled. It pretty much stopped him, and he forgot about going outside and sat down. he didn't get upset, but he knew the end was there.
I worry I don't challenge him, talk to him, discipline, teach him......enough......

you?

the word sorry

2009-09-29T10:59:00.000-04:00

Yesterday I went to synagouge. My husband likes to attend at least once a year. For him it's Yom Kippor, for me church is Xmas and hopefully Easter.
The purpose of yesterdays lesson was repenting. Saying your sorry for even you every-day shortfalls. If your ignorant, rude, unfaithful, uncaring... knowing to say sorry.....
Also, being able to accept an apology. truly accept it.
Well. This is a good lesson, and quite honestly the world would be a better place if more people could say. look, I was wrong and I feel bad about it. and then the apology was accepted and all moved on. Godly I say,.
Well I suck at all the steps listed above. I hate to say I'm sorry. (If I step on your foot, or drop the door before your thru, no big deal) but the biggy sorries... HATE IT!!!
I'm not a huge communicator as is. I'd rather dole out the silent treatment until I'm over what ever is bothering me. When I get mad I'm a TOTAL BITCH, and will say whatever I damn well please, no matter how nasty it is.
If I'm the one who's wrong, I'm much more apt to SHOW I'm sorry. If I know I was a total bitch for no real reason, I do little things for Brent. Bring him a snack, offer some token that shows I know I was wrong.

Now... when someone says sorry to me. (and it's a biggy sorry). I can't say I forgive people so easy. Forgive and never forget. We all know it's true. I can't help it. I'm a grudge holder. fool me once, shame on you,,,,yadda yadda yadda

you?

I hate being broke

2009-09-28T14:00:00.001-04:00

This was one boring ass weekend!
We're a little tight with cash right now so there was no fun or frivolity this weekend.
Friday Night I cooked frozen Elios' pizza. To add insult to injury, I dropped each sheet of pizza thru the grates and lost the cheese on 95% of it. That left us eating sauce and crust... Brent was chivilourous and said he'd take the bad piece.... I had to ask which one.
Saturday, Brent took my 2009 car for its free oil change. How ya think that worked out. While he was there he mentioned I needed a right turn signal. Too easy. Turns out a squirrel (or something) had chewed the wires in my car and I have NO lights on the right hand side. No brake lights, headlights, etc. This will cost a whopping 240.00 to fix. Not to mention we haven't had a lot of luck elsewhere, because some shops don't have 2009 parts yet,,
Sunday I baked for the holiday tonight (Yom Kippor) I baked an apple cake (which is too pretty to eat) and 8 dozen cookies (don't ask me why) I baked extra cookies so Ben could enjoy some. He picked one up, smelled it, and thru it on the ground. little critic!
Anyone who has little boys may find this story funny, and have full sympathy for my sister-in-law. That was my reaction. I laughed, but feel her pain as if it were my own.
My 11 year old nephew decided for GOD ONLY KNOWS what reason to get black and orange spray paint this weekend and decorate her house and outside fence. She lives in a nice neighborhood, but it's by no means rural. She and her husband had him outside scrubbing for 2 hours and went to buy mineral oil something. She and the father asked him "WHY!" and he truly had no answer. Poor kids. So many things seem like a good idea at the time, and suddenly reality stops by for a visit.
Can't wait to see the art work tonight (dinners at her house!) LOL

platapus

2009-09-25T13:13:00.000-04:00

This blog has nothing to do with a platapus. I'm just sick of titling my blogs to the section of the week. BORING
Nothing exciting, and yet the days are full. Ben has a KILLER bruise on his legs. Ben has sensory issues and is forever jumping, tumbling, hanging, you get the idea. We bought new furniture in January. We started out buying relatively expensive furniture, nicely designed, etc. After 15 hours, 8 furniture stores, and a numb ass from sitting on various pieces, we (smartly) decided to go cheap.
While the grown up in us said "get a beautiful matching set", the benjamin in us decided.... We don't want to have to worry about his butter fingers on the couch, we don't want to worry about his freshly shitted ass being changed, etc. again SMART move on our part. The couch we bought is almost all heavily cushioned. the seats, backs and arms. All but the one little piece holding it all together. Ben jumps from the couch to the recliner and BAM. When he cries, we know it had to hurt. This is a child who doesn't acknowledge a lot of pain. He fell off the back of the couch a few weeks back, whacked his head on the molding (one of those insta-lump situations) cried for 15 seconds until he heard the theme song from the wonder pets. Suddenly crying lost its appeal.
When we bought our couches we were saying we'd be satisfied if we replaced them in 5 years. Ben has arched and peed on them, the dog Fletcher has gotten excited and peed on them.... your following the idea. Suddenly 5 years seems optomistic. I don't know about you, but my mother and grandmothers furniture lasted 20+. Are things just made cheap or does our generation have no respect for furniture? I'm seriously curious.....
Well.... Have a great weekend, and may something fun, sweet, or profitable happen... and for me too!

mid-week

2009-09-23T16:00:00.000-04:00

I have a dentist appointment tonight. Nothing like working all day, rushing home, and having that to look forward to. It's an old joke, but why do dentist talk so much? You can't answer them, and you don't want them concentrating on anything but their task at hand. Shut up already!

I'm in a slump. In a slump at work, in a slump at home..... Each day I get up, sure that there are big bags under my eyes from not getting enough sleep (there are no bags), I take the dog out. It's not for a walk, it's for a drag thru the neighborhood. He gets up at 5:50AM and then wants to sniff every leaf. I'm so effected by guilt, that I feel like we got this dog, so I have to spend the time and energy on him. He's going to be penned up all day, so he needs a walk in the AM and some exercise/play in the PM. My husband is the big dummy that wanted the dog, but is he bothered by any of these feelings of guilt? NO.
I drive 1- 1 1/2 hours to work depending on the traffic, work all day, and then beat the traffic home. I feel guilty when Ben is one of the last kids at pre-school, run home.... Ben wants his show on, shoes off, the dog has to pee BAD, I have to pee BAD, and everyone thinks their first. Ben usually wins that battle.
Make the dinner. Bathe, read to,and put Ben to bed. The husband......arghhhhh.
The husband feels I should do all this while I dance on lillies and aim to please him.... ass

The other day, after getting home from walking the dog, and had showered my husband asked me if I had bought his clean clothes up from the basement. I hadn's so I went and got them.
That night while eating dinner, he hands me his plate to re-fill. I ask him why he couldn't get his own clothes or re-fill his own plate. His response:"Are you getting your period again, because we just went thru this..." Cue music........Scream!

Another week begins

2009-09-21T12:21:00.000-04:00

Well the weekend came and went as quickly as ever.
We had a holiday dinner on Saturday night. As I've said before my husband is Jewish, so it was the Jewish New Year.
I spent Saturday power cleaning (which I HATE) and cooking (again the H word)
As I've said before, I have no lost love for my mother-in-law, and knew she'd be making herself center stage. My thought was, if I spent my time, energy, and money cleaning, cooking, serving, shopping..... why should she have the power to make this miserabel.
Now two options came to mind:
Hit the wine early
F*ck with her
I decided on my second option. hehehehe. I was as friendly and sweet as could be. Saw the wheels turning in her mind, and almost the ..huh, guess that's done. Next time she stops by, I'll ice her out again. She'll never know what starts me or stops me. sick?... maybe, but..... I enjoyed myself!

My Benjamin.... ahhh the lovely child he is. He was feeling his oats this weekend. He was playing on one of those large balls with handles you use to bounce on.. repeatedly we told him to take it on the grass and not the concrete... he continued to go back to the concrete, until guess what happened. whack. He was annoyed by this whack on the head, so like something out of the three stooges, when I bent down to see how he was he held my face with one hand, and slapped me with the other. Must of made him feel better, because off he went to enjoy his day.

Dementia

2009-09-15T13:49:00.000-04:00

I have dementia. I've tried to get on to post for three days. I'd swear I put in the right username and password. So sure I thought google had been hacked and I had missed it on the news.
That little piece of insight should tell you a lot about me. I can't be messing up... this multi million user program is to blame..... ahhhhhh how sweet it is.
My husband always likes to say I think I'm always right. Don't most people. When you're talking do you typically ramble about things you know nothing about? No.... so doesn't it make sense if I'm talking and giving an opinion I think I'm right?

Anywhoo.... My husband is Jewish. This Saturday I'm going to be having about a dozen people for dinner. How prepared am I.. That's right kids.. not at all!!!! I spent the past weekend just getting rid of the shit laying around the house, so when I actually clean I can hit the surfaces instead of all the crap laying on top. Now that's planning.

I'll be cooking Matzah Ball Soup and other random items. If there's one thing I can do, (Though I HATE it!) it's cook. Truly a curse! The one thing that has NEVER come out for me is Brisket. It's interesting because we've always busted Brent's sisters balls HARD about her cooking and she makes a killer brisket.

what goes along with a family dinner.. That's right kids... family. I'm fine with all but 1. I don't know why at this point I dispise my mother-in-law as much as I do. We've hit rough patches along our way, but I truly loathe her right now. I can live with this, but I do feel a little bad for the hubby. He is a sissy when it comes to his mother, and that annoys me.....

I could tell stories that would leave you sending your mother flowers. She was born an only child ...... that's probably the start of it.

Well, I'll get back to Ben and Fletcher tomorow...until then.....

Back to School

2009-09-11T11:51:00.000-04:00

My son went back to school yesterday. This isn't as big a deal for us as it is for many others. I thank god we live in the cherry hill school district! Ben was in school for a six week program over the summer. They provided transporation and he went from 9-1:30 instead of the school years 9-2:30.

Ben had a two week break in the begining of the summer and a two week break at the end, so going back to school is a blip.

I am very lucky. (Don't quote me) Ben has no problem with switching from school, to summer camp, to vacation, and back to school. We talk to him and tell him what's coming. His dad and I know he's listening and processing, because he's never suprised.

When he started at the Learning Center back in March, which he goes to after school, Ben and I visited one day for about 2 1/2 hrs. We intended to go again the next day but we had snow. We had no choice but to send him on Monday from school on the bus. There I was at the learning center, hiding in the office watching the closed circuit TV. He gets off his bus, pretty as you please, and walks right to the classroom we had visited on Thursday. No problems, no issues, just "here I am world"

That makes me lucky.

2009-09-09T11:03:00.000-04:00

Back to routine. It's somewhat welcome.

Last night I fooled myself into believing I was dipping into domestic bliss. I had my active 4 year old, and my 15 week old puppy penned in the den. Which is now a play room. I peeked in, and there was Ben sitting IN his toy box and the dog passively chewing a toy.

I made dinner, set the table, and genuially enjoyed the peace and thought the two "boys" where getting along so nicely.

That's until I walked into the living room and saw my cell phone. Obviously the dog had tried chewing that first. It now is held together by a single rusted bolt... or something like that.

Ben, feeling artistic, had decided to use his beautiful marker on our wall. I walk into the den to school Fletcher (the dog) and see a picasso by Ben.

I tried getting Ben's attention to ask about the portrait, but convienently this time he didn't hear me. I then walked him over and inquired. He simply looked at me and said "it's a smiley face"

Though it's in Crayola washabel markers, which I SWEAR by!!!! They are truly washable, I've left it up to enjoy it, It looks so nice against our newly painted wall!!!!

2009-09-08T16:17:00.000-04:00

I'm back. I know nobody has missed me, but I'll say it anyway!

I'm just getting back from a week at the shore, and then the long labor day weekend. It felt sooo good.

I was at the shore with Ben, my mother and grandmother. I seriously couldn't tell you which of those canidates were the highest maintenance.

Ben LOVED the water. It was 74 degrees, and choppy most of the time. He didn't want to hold my hand and kept trying to go out deeper. This impressed many around us, but I would have prefered the more timid child who only wanted to go in up to his ankles. Now that would have been a vacation!

As far as sensory, he was not bothered by the salt water nor sand. They're constantly doing beach restroation. That's probably because of kids like Ben who carry 1/2 the beach home in every body orfice. The tub held enough to sustain several sand crabs, oysters, etc.

A cute story was Ben and I were digging in the sand. He wasn't paying me a lot of attention, so I put my finger out of the sand a bit, and asked him what that? He started staring and said... it's... it's... it's a toe!...

He thought we had dug some miscelianious toe our of the sand. That of course got me hysterical, and I don't think he pinpointed exactly what was so funny, but he did laugh too.

The rides were a lot of fun. I finally let him go on the flying elephants and airplanes alone. He was able to pull the joy stick back and make them go up. Getting to be such a big boy!

The 10 day's off were jam packed. Sunday we went to a pary at my sister-in-laws, where he spent the entire time going off her diving board. Ben's dad was thrilled and excited at how well he did, I again, was the nervous wreck. He made it out without a mark, so GO DAD!!!

Nice to be home

The first

2009-08-28T12:53:00.000-04:00

I just was reading a blog by autism's bitch and it was litteraly the first time I've read a blog that I could laugh at and see myself.
Often blogs can be depressing or used as a teaching tool. This one used the work fuck... which I like... which I use on a daily basis.
Autism isn't funny, but we are still aloud to laugh.
My husband and I are devoted to our son. Our worlds revolve around him. His success are celebrated like no others. It's just hard sometimes when those successes are so minimal others wouldn't notice them. Our son turned 4 in July. The past weekend he finally learned how to blow the paper off the straw at us. Well... you'd think he'd just earned a graduate degree. But it was his success!
This week, he for the first time sang along with the Wonder Pets.... Success!!!

Along with dealing with Ben... we have family.... ooooooooo

My husband mother seems to love that Ben has autism. She was the first to notice that my perfect child wasn't perfect. I'll never forgive her for this.

My mother still see's the perfect child. "If Ben was autistic he wouldn't be able to tranition so easily like he does".... Well if Ben wasn't autistic he would talk, look at me, answer that age old question of do you want milk or juice?

I really do plan on venting, so... if you have a perfect life...turn aound now. If not.. Welcome to my world!