Wednesday, November 2, 2011

Stuck in the.. in between.


As some of you may know, we're stuck between... well, a rock and a hard place when it comes to Tommy's education.  There just isn't a setting SMALL enough for Tommy to handle.  Nor is there a setting, that can handle Tommy's complexities.  This seems to be the the path that keeps holding him back.  Homeschooling is working in the meantime.. but I can't help but feel that there's so much more he COULD be doing but just can't... because it doesn't exist.

Tommy's always been on that CUSP with his Autism.  We've had to fight for everything.  In some cases, we've had to CREATE programs for him due to him either being the oldest of the "bunch" or school systems never having an autistic student before. 

Now, we've hit a new phase.  After spending a better part of yesterday (and the day before) researching Ohio's Autism Scholarship Program.  In theory, it seems GREAT.  Wait, not just in theory.  Let me rephrase that.  I really really really.... REALLY wish I had access to something like this 10 years ago.  For families with younger children.. its a PHENOMENAL program. It'll take me hours to explain.. so I won't.   In short.. you're given 20K to educate your child through a list of "providers".  From speech, OT, transportation.. the list goes on.  The key? You do the work. You interview these people. You set the schedules.. YOU are the party planner.  I just don't have this in me anymore.  I'm running on burn-out status as it is. We all know that getting "providers" is like being a part of a secret society anyhow.  When you find a good one, you don't want to SHARE in fear of your provider being drawn away from your child. When you read about the "BAD" providers, you have to sift through the reason's they've been listed as BAD.  Now, imagine doing this for EACH person you're to hire.  Now, with all of that being said, imagine your house being invaded with this.  It's difficult.  We have 3 dogs with ZERO manners that going APE-SHIT when we have visitors. I could crate them in the basement but, they hear us walking around.  So what they'll do is bark non-stop if we're lucky.  We're not usually that lucky.  They usually HEAR the instructor hear and then bark hysterically usually causing them to mess themselves in their crates.  Yay, fun clean-up.  NOT.  OR, I rush Brianna into finishing her homework so she can sit with them.  We tried her sitting with them in the basement with music blasting (so they wouldn't hear the instructor) and, well... that worked as well as crating them.  Last week we put them upstairs, with music blasting, and Brianna working tail off keeping them occupied. In the end, Mario peeked out the door as he was leaving and .... have you ever heard a Pug SCREAM? It was embarrassing.  HORRIBLY embarrassing.  I've got to figure out WHERE to put them. The dogs, AND Tommy with his instructor.  Outside would be great, but it's getting very cold here.  I'm not sure how much longer I'm going to be able to utilize Brianna to do all of this.  

The part that's really killing me, is we're Tommy's ONLY interaction with PEOPLE.  I take him OUT everyday.  We'll walk around Walmart, Target.. ANYWHERE so he can interact with people.  He loves watching Brianna with her friends.  I can see he WANTS friends.  I know he wants to interact with PEERS, but he doesn't know HOW.  Social groups are ALWAYS (ALWAYS!!!!!!!!!!!!!!!) geared towards younger kids.  Or, kiddie things which Tommy DESPISES.  There are no social groups for Teenagers.  Tommy's NOT into sports (sobs! Why can't he be into sports!!!!!) So sports stuff is OUT.  He loves video games, but he doesn't have the skills necessary to interact with people online to play.  He LOVES youtube. There's just nothing around FOR HIM.  

In the meantime, we're going to continue homeschooling with him.  We're going to start implementing speech now as well since he seems to be tolerating demands so far.   I just wish he was having FUN.  What kid wants to hang around his mom 24/7? It's no wonder he spend 2/3 of his time in his room.. alone.  I LET him because, he's BORED with me.  Of course I could take him to do things, but unfortunately we don't have money pouring out of our pockets.  Further, if I have to deal with one more ignorant idiot looking at Tommy like he's an alien, or kids flat out LAUGHING AT him,  I just may end up in jail.   Honestly, we can't afford the bail.

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I am a FIRM believer that bullying starts at home.  If you don't EDUCATE your kids on the special needs community, then you may as well sign the card allowing you child to BULLY our kids.  If you don't teach your kids, I have NO PROBLEM teaching them for you.  I'm NOT nice about it. Personally, I'm fucking TIRED of Tommy being LAUGHED at in public. I'd rather be in South Central LA dodging bullets than to have to live through this bullshit.

8 comments:

  1. Rhonda, I'm so sorry you're going through this. I hope you find something that works for Tommy soon. I don't get bullying. I don't get why people would want to be mean and laugh at someone else. Sam is still little, so we haven't experienced that yet, but I know that things will change, and I'm afraid about that.

    OMG, I can SO relate to the dog problem! I thought I was the only one. We have been having all of our therapy away from home for about the last year, but we had a music therapist come in last week. My dogs were HORRIBLE. I was so embarrassed, I wanted to cry. I don't know what to do with them when she comes this week. Actually, it's one of them that's the worst and the other one feeds off of her. I love my dogs but sometimes with everything going on, they're just too much. I was thinking yesterday how much more I'd enjoy them if other things in my life weren't so complicated. If you come up with a dog/therapy solution, let me know!

    In the meantime, hang in there. I wish we lived close!

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  2. the teenage thing is key. I don't know how it escapes everyone's attention that the same kid who needed intense therapy at 5 is probably also going to need it when he/she is 15. . . or 20.

    So everyone seems to "get" that autism is a big deal for infants and toddlers, but they have blinders on about what happens to these same epidemic numbers of kids once they crack puberty.

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  3. Exactly Jim. I really hope there are services for YOUR kids (meaning the younger children that most of you have.. pre-puberty) when they become teenagers. This thoroughly just blows.

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  4. Can Brianna take the dogs in the car for a ride somewhere during Tommy's therapy?

    I don't know how the teen years will affect us. The first thing that popped into my mind was Alex Plank at www.wrongplanet.net as a source for Tommy. There is also a site called teenautism.com which is a static site but if you email the founder of the site, she may have some resources and ideas for you or she may be able to get you in contact with others similarly situated in your area.

    I feel sad about what you and the kids are going through but there is so much love going on with Brianna helping out, you struggling to give Tommy interaction and Tommy just being Tommy. I send you all (((hugs))) and I know you may feel burnt out - but we never quite get there because in the end, our love buoys us through the tough parts.

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  5. Oh Karen!! You always have the greatest words. I will look into those sites tonight. I think i've been onto the teenautism one. Gotta get the boy ready for homeschool here at the moment. Brianna would LOVE to take the dogs for a drive! However, she's only 14 and ... that wouldn't be a pretty site im sure lol We'll figure something out here. When I got these dogs, I had so much time on my hands. Then everything fell apart and all their training just went ka-put!

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  6. Ok I am NOT a dog person so I say give them up. But I guess you love them and couldn't do that!!

    I hate the bullying. Utter bull shit. Arsehole people being arseholes.

    I am scared for what happens when my kid gets older. He doesn't get ANY help now (he's in special needs school, but no therapy etc, different here). He is struggling NOW, and I need to do something NOW. Your post is encouraging me to get my act together.

    Hope things work out for you guys. I am sure they will.

    Are you friends with any other mums/dads with kids similar to Tommy. Perhaps start a social group of your own? Once a week go to a house for snacks and computers?

    I am sorry you are struggling. Be ok xxxx

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  7. Oh I could never give my babies up! lol They really are good dogs, when we don't have people over lol My friends are parents of Autistic kids/adults. It's just, we don't live near one another. They're all on different "levels" and really don't have a lot in common. Us parents do.. but not the kids :/

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  8. That is tough. We're really fortunate we have a social skills group here that does teen get-togethers, but we're a few years from that.

    The services in Ohio sound amazing. We're thinking of a move in a couple of years, but had never considered Ohio. Might have to re-think it.

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