Thursday, October 4, 2012

Not sugar-coating it

Yesterday.... I was mad!
I went to pick up Ben from his after school program, and the cute little 19 yr old aide comes up and tells me there was an "incident"  FUCK!
Out on the play ground, Ben went to play on the monkey bars.  No kids are allowed to play on the monkey bars because kids have been breaking their arms, etc......(wait.... what?) and they really don't want Ben to break his arm (um, thanks?)
Any way, there's a young girl (middle school/high school) who works/volunteers there, and she tried pealing Ben's hands from the bars.  When she did, he scratched her down the back.  the other aide goes to assist, and he's kicking and punching her.  Now Ben's never kicked or punched in front of me, but I've resigned myself to the thought the world is not out to get us.  People are not looking day in and day out to make me miserable by coming up with intricate lies of Ben's behavior.  it just is.
I ask the question I don't want to ask.  "Is Ben getting to be too much for you?'  She looks at me, and I'm guessing can't decide how much to reveal.  She then tells me that they're documenting incidents.  Basically she's telling me their dotting their i's and crossing t's becuase they're going to want him to leave (remember camp....da da dahhhhhh)
I have to get out of there again.  Now, I've loved his going there.  Outside whenever possible, even in the cold, getting fresh air.  providing him with oversight.... But it's coming.... "Ben doesn't belong here."  "Ben is too affected to be here with the other kids."  I can already hear them.  It's fucking killing me.
And at that point, I'm mad at Ben.  I really was.  I yelled, I cried.  "Why can't you just behave for 2 hours a day?  You're going to get thrown out.  I'm so angry at you!"  I even gave his hand a hard squeeze.  I'm far from proud of myself.  I'm very upset that I let this get the best of me.  He's crying he wants his daily cookie I bring him, and the Fresh Beat Band on the radio.  I throw the cookie, and tell him no.  3 minutes later, after a breath I give him his cookie and put on the music.
I have no real resource to ask that question of "Does he get it?"  His school has had the teachers rearange due to the abuse scandal last year.  If you you-tube autism abuse in NJ you'd see what I meant.  Ben wasn't involved but his teacher was moved to another class, then he had a new teacher for 6 months, and this years teacher as 2 years experience.  The social worker moved to another school, in protest, I don't know, but this social worker doesn't know Ben.  His doctor at CHOP... she see's him 30 minutes 2x a year.  What does she really know about him?
I was thinking Ben knew.  He was aware of his actions.  Ben's father was dead set on, I'm crazy and it's a symptom of Ben's autism (which really had me feeling like shit!)
I then decide to be proactive.  I call my insurance and think I'll get a behavioral therapist to assist with this behavior.  WRONG!  my husbands company provides us with healthcare, and it's free for the whole family.  That's pretty sweet.  They self-fund their insurance, so they are not bound to the autism insurance act.  And they don't provide it.  no OT, Speach, Behavior therapy's as they apply to learning, etc (basically autism) written out in the plan.
Now at this point I'm about buck crazy.  I say, to no one in particular, it's crazy how they'll pay over and over for alcohol and drug rehab, which is a bit of a self inflicted wound, but autism.. they can go f*ck themselves.
I'm feeling lost, overwhelmed. 

Wednesday, October 3, 2012

but it's the weekend

I left work on Friday stressed, and ready for the weekend.
Work is going through an expansion, and that leaves me with a butt load of work to staff the place.
I won't even discuss work.
I get to Ben's after school program to pick him up, and a 1st grader asks the question I'm sure so many would like to.
"Why doesn't Ben speak our language?  Why does he just go ahhhhuuuuhhhhhhmmmmmm?"
Really?  Friday afternoon?
Well, the aide is surely flustered, but I say to the child, Ben is a little different, and the way he expresses himself is different, but when you speak to him he understands everything you say..blah."
I have to get the whole teaching moment down better.  I still don't know how to put it.
From there, the aide starts to ask if Ben had a tough night the night before..... Great.... where's this going.
He came off the bus, and she wanted him to go the bathroom.  He didn't have to go.  She then wanted him to wash his hands before snack.  He didn't want to.  He pinched the beejeezus out of her arm.  DAMN!
Now we know he has to keep his hands to himself, but are the other kids told to go to the bathroom?  Ben will ask when he has to go.  Are all the kids made to wash their hands?  Leave him be.  I deflect from keep your hands to yourself.
I then tell her you have to be firm.  When he starts that crap with me, I just have to turn and give him the "sure you don't want to rethink this before you do it?"
Now it's not that I'm looking for anyone to strong arm my kid, but who'd the adult?  Throw me a bone!  Care for him!!!
The weekend was a bit tough.  For those not used to Autism I'll set the scene... Boscov's big shoe sale.  Must have been senior citizen day as well.  Ben would prefer to be riding the escalator, and we've dared drag him into the shoe dept.  We get to the edge, and he grabs two shoes off a display and wings them with all of his might.
I duck, his father attempts to catch them.  One old woman screams, another shouts "what's happening!!!"  At that moment I almost fell over.  I told my husband lets go, we're leaving!  He replied no we're not, you're returning your shoes and getting a new pair.  OK sucker...  I then pretended not to know who they were and shopped.  At the time I concentrated very hard on not cracking.  This second, I cracked a smile.  looking back (since no one was hurt) it was a bit funny.

My co-worker suggested today I get an anti-depressent.
I'm not sure how I feel about that.  My life is incrediblay stressful right now.  Do I take a pill to cover that up?  I'm feeling waves of anxiety litterely from the time i open my eyes.  But there's cause.
I can't decide what to do.....????

Autism is so much $%^& fun!  And yet, the kid cracks me up constantly.  like he really is funny!  Loves to repeat whatever you say with the word NO.
Time for Bed - No Bed
Do you want to go to Home Depot? - No home, No De, No Po
Come on Peach Fuzz - No peach fuz
Come on Chicken Livers - Well you get the idea.  I love when one thing I call him cracks him up, and he has to laugh before telling me no.
My son has a sense of humor, and loves to give hugs and kisses.
Know one child with autism, and you know one child with autism.  none are the same.

Wednesday, September 26, 2012

New year, same lunch box

Over the summer Ben went to a special needs camp.  It was through the JCC, and was an inclusion camp.  The majority of kids were typical, with each bunk having the ability to have a couple of special needs kids.  Each special child was provided an advocate at no extra charge to give them the full camp experience.  My husband and I were SSOOOO Excited.  We had heard such wonderful things, wanted Ben to experience the lake, pools, great outdoors!!!  It wasn't cheap... but we just knew it would be worth it!  so we saved.. you get the idea.
We visited the camp 3 times to get Ben used to it, met with the advocate, who was in her final year as an OT student, and talked it up!!!
so......when he was asked not to come back, can you imagine?  This is the shit the devestates parents.
I don't know that the social workers, teachers, anyone who deals with our kids realizes the effects they have, at least on me. 
The camp director has called a couple of times to ask what to do when Ben get's upset.  He was starting to scratch, bite, and generally be quite difficult.  I told them to redirect him, get him interested in something else, and his attacking people was not the norm.
The down side to this camp was all campers have to follow the days agenda.  Forget that you have a child with serious communication problems, and trying to learn a vast array of new games, schedules, people may be a bit much.  Forget that they asked for and received an IEP, why... because he needs and individualized program.. right?  Isn't that why he's provided a 1:1.  Because he wouldn't be able to do the program like the other mates?  Yet... that's what was asked of him.
We had made it very clear that we only wanted Ben to be outside and have fun.  If he was on a swing, or laying beneath a tree looking at the clouds, but happy.. we'd be thrilled.  But no.  We were told not to bring him back.
Now remember, his father and I work FT.  Try finding child care, the last week of July, for a special needs child.  Easy right?
There just so happen to be a special needs daycare 1 town over.  They had an opening.  I began to feel a little hope.  I would be able to go to work and have Ben safe, and engaged.  HA!  When I took him, he was in rare form.  The heads of the school/daycare told me they would need him to have a 1:1, and by the time someone was trained, he'd be back in regular school for the year.  I had to get the hell out of there.  I didn't blame them, but I was going to lose it, and I hate doing that.
The same afternoon, we had a scheduled appt at Children's with Ben's Autism Dr.  We go up to see her, and Ben decideds he's going to scratch and pinch the beejeezes out of me.  The Dr had a student that day, and what a lesson this poor girl got.  I couldn't hold it together a minute longer.  I start crying (the ugly cry) and at the same time assuring them I'd be fine in just a minute.  They're staring at me, and very obviously could see Ben was having a bad day, as I reported the previous days camp termination, and that day's decline for daycare.
My mother took care of him the rest of the summer.  My mother moved in with me in June, and trust me, that's a WHIOLE other post.  She moved in with me, due to very poor choices, and quite frankly a good bit of laziness.  To top it off, she has breast cancer.  This was discovered after her poor choices got her in quite the whole.  When I give her the hairy eyeball for something she's done, not done, advice I never wanted....... AAAHHHHHHH!!!!!!!!
But, back to our main character...
Ben has now entered the 2nd grade. Time goes by entirely too fast. I think that's even a little more evident when you're the parent of a special needs child.
The future starts to consist of when he'll no longer be eligible for public education, where he can live, how about when something happens to us.
I completely adore Ben, but fear for his future on a daily basis. That will age you!
At the tender age of (let's just say over 40) I start to think about exercising to keep up with him, and stay alive. Forget the whole looking good. Who has time for that?
People say "make sure you take time for you and your husband".... really? Friends and family are afraid to take care of him. My mother will, but she stays in the house.
And yet, after all this, I'd still call myself a positive person... I think there reallly is alternative universes.

Friday, March 16, 2012

We're everywhere

Every Thursday, Ben andI go swimming at the JCC. As we head to the family changing room we need to wait for the tween special needs social group. Their group staff are assisting them with changing. Can I tell you how freakin cute each and every one of them are. and completely unique. When you think, a lot of NT all wear the holister, juicy, try to blend into each other. Our guys don't hide or hold back anything! lol
So, we finally get our suits on, and head to the pool. There's a special needs swim lesson going on with approx 8 kids. They looked to be 8-12. And typically special needs = autistic.
I glance back to see what the temp is of the pool on the whiteboard. I find that out, along with from 6-7 special olympics will be in two lanes of the main pool.
There;s a sign in the entrance of the JCC saying "A place where kids don't have to feel special" Isn't that awsome! Our kids really weren't standing out, being singled out. There was a community of us. And while there were also several NT kids, I have to think exposure to this degree will make them more accepting and aware of different people walking beside them.
Way to go JCC!!!!

Monday, March 5, 2012

I want to scream

I love to give the finger to the universe. I swear I can do it, and there's no reprucsions.
HA! Every time a new drama/trauma comes along, I'll say "What else could happen?" My husband warns me not to do it, but... I laugh and say "Bring it on!"
So far this has gotten me:
My oldest child keeps going to AA. He'll go then stop. but, he keeps going back. He tells me that if he drinks, he REALLY drinks. He goes to meetings and wants to avoid putting in the 20+ years many of the other members have gone through and just quit now. His father l.o.s.e.r! tells him he's 23 and isn't going to quit. That's why I left his sorry ass! It's been 17 years since I dealt with that plague. Over the years, I mellowed, and forgot what an asshole he is. Never gave a SINGLE dollar toward his kids. Another who could whine, cry, about losing his boys, but did he put down the bottle and get a job to convince a judge he deserved time with them? NO! That would have needed effort, and he looks so good as a victim. Since the two older boys can now contact him when they want, they'll inform me of conversations with him, and I recall..... What an asshole!
My second oldest has mental health issues. As a teenage, he was intimidating, impossible, I can not express enough.
He quit school. I would go up, pry open his door, and try dragging a 6 foot, 200lb adolesent out of his bed. He would scream/threaten/push me out of his room. He would become physically agressive with my husband. I can't express the nightmare. The cherry on the pie, was when the police came and informed us there was nothing we could do until he turned 18. This was done in front of him, and you might as well of said let the games begin. Because after that... Hell was on earth.
I have many regrets about this time. I was concerned about the neighbors thoughts, etc. If I could go back in time (Oh genie please!) I would call the police every single day he refused to get out of bed and go to school. I would invoke any institution I could that would not allow his poor behaviour to get the results he looked for. I make no excuses. At the time, Ben was being diagnosed, my husband lost a job, we were on the border of divorce, money, you name it. I think I couldn't handle another thing.
He doesn't live with us anymore. He lives in a home that helps mentally ill kids. I don't know what to make of it. I swear I think sometimes he's living a self fullfiled prophecy. His father is on medication and disability. He was not mentally ill when he lived with me. An asshole YES. Mentally ill, No. The father's father. incredibly abusive, to his wife and children. Mentally ill? I don't know. An asshole... YES.
I don't know what to make of it.
Ben has autism. what more is there to say about that. Most times, I deal well. for whatever reason this weekend. I kept thinking, we're so not preparing. I was 38 when I had him. An older mother. Now with special needs, less time to be with him, less time to prepare. I quit smoking last year to try and increase my time with him, but what about financially. Like a couple of idiots, Brent and I go out to dinner, lunch on weekends, we haven't put away a single dime.
How is he going to live after we'er gone? Is some 7.50 and hour employee really going to invest in him? It's killing me. And like all bad habits, we're going to have to change our current ways and start socking it away.
Now, my mother calls me on Thursday and says she has a lump. Friday she goes and gets a mamogram and tells me she has breast cancer. I have to say I'm shocked the radiologist would diagnose her. but...
Tomorow I go to the surgeon with her to see what's up.
Her words to me are "I'm going to have to move in with you"
Keep in mind, she's been on unemployment for 2+ years. She left a job she had for 20+ years, that had no retirement fund, and she had no savings. She's run out of unemployment and can't afford her rent.
I feel like a corpse laying in a field with crows pecking at me. Really? Does she not feel like I have enough in my life right now? Has she looked for job, looked for cheaper houseing, done anything?
Am I really going to have to take this on too? Her easy answer is come and move my stuff, and take care of it so I don't have to. FUCK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I have a lot of questions right now, but the one question I'm not asking is what else......

Wednesday, November 30, 2011

I crack myself up!

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!

Thursday, September 15, 2011

a dirty little secret

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

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.