It's the holiday season...

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"?

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..

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"

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

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

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

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

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

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

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

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

there's gotta be gills somewhere on him

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!

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

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!

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

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

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?

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

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

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

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?

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!

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

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.

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

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

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

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

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

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

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

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

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

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:

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?

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

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

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....

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!

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!!!!

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

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

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

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

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

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.