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Change is in the air.. and why my kid isn’t getting a birthday party this year

November 11, 2011

I just wanted to give a mini testament to what our very small VBA program is doing in our home for our child.  I’ll start off by saying we have NO resources here to get an official VBA program going. We are doing small things recommended by the doctor who diagnosed Rett and also things that I can find online.  We don’t know if we are doing it the ‘right’ way but the changes we have seen in a VERY short amount of time make us feel secure that we are making the right decisions in what our child needs.

The first thing we did when we came home was box everything up so Rett had to ask for everything he wanted to play with.  Rett is very good with labeling so was too advanced to just make him say one word.  We made him say ‘I want’ whatever it was from the very start. This was, and still is, very difficult for him.   His conversation speech is primarily labeling (one word) or repeating phrases from movies or phrases we say. They are in context but not from his own mind.   He also did a LOT of jabbering/jargon speech.

Since we began this ‘say ‘I want’ and prompting Rett, his overall speech has changed.  Its not just that he is requesting more (although he is) or that he’s using ‘I want’ which he never did. Its a total difference.   Once Rett realized he could ask us for things he was requesting a LOT more. Suddenly he could tell me what he wanted for lunch.  He could make choices.  If I started and activity and he’d rather do something else, he told me about it.  He could REACH me.  It was like a light bulb went off in his head and since that time he has been more ‘with’ us.   When he watches his movies he used to become very engrossed and zone out. He now tells me what is going on. Points out things.  Talks about if the movie is scary or funny.  He wants to share with me instead of being in his own head.

We also noticed that his jargon and jabber has went WAY down to almost completely disappearing.  Tom and I commented on this last week but my mom also asked me yesterday if I noticed he wasn’t using as much jargon now.  He was trying desperately to reach out and communicate. Now he knows how!

Rett is a lot more conversational now.  I know that most of what we are saying is just telling him what to say but he is becoming more used to the back and foreth of that where we say something, he says something, we say something.  We didn’t have much of that before.  Although us telling him  what to say isn’t a natural type of conversation,  it reached him somehow.  Some of my friends were saying how their children dictated their play or what they were doing ‘And now mama lays down’ when playing with the doll house.  Rett has started to do this more. I  think he realizes we want to listen to him and that he has something to say.  His talk makes a lot more sense now and has more purpose.  Today he spilled some of his sensory bin on teh floor and he said ”big mess! clean up!’

Another thing he has started to do is tell on his sister. Or tell me when she is doing something dangerous. He never did that before.  I don’t think eh really noticed her besides if she was stealing his toys or if he wanted to steal her toys.

All these things may just be his natural maturing and maybe he would have done them without us prompting and demanding more language from him but I don’t think so.  Its like we flipped a switch and our little boy is just more a part of our life now.  We still have  lot to work on.  Rett has a lot of attention seeking that he does that seems ‘odd’ because he doesn’t know appropriate ways to get attention.   And its very frustrating when you don’t have resources to tell you how to do things.  While its easy to demand him say I want before getting items, its harder to figure out how to make him request attention and some other things he needs help on.  But we keep trying new things and seeing improvement.

We also decided this year that we aren’t doing a birthday party.  Its not because my kid is autistic and would get overwhelmed or whatever.  Actually I think he would love it.  But honestly our house is too small to have a ton of people over here without me feeling way too claustrophobic.   And I’d rather just have a day to spoil Rett.  He doesn’t seem to really ‘get’ birthdays and parties.  They don’t upset him, they just don’t really sink in.   I still feel a little guilty about my decision but there’s always next year. And the next year. And the next year.  He’ll still have his cupcakes and candles and all of that.   But we’re just being selfish and keeping him all to ourselves 🙂

One Comment leave one →
  1. November 12, 2011 4:30 am

    I love reading the progress you are making! I don’t think it is natural maturation! You are opening doors for him and it is clicking into place! Such an awesome feeling!

    We don’t do parties for Sam, well, we tried once and he hated it. But we have the most fun on his birthday! We just celebrate him and let him do all the things he loves. He doesn’t enjoy lots of people in a small space but he loves to hike and be in the outdoors, so we go hiking every year! I cherish our time with him, and although each year, I’m selfish in that we keep it among family-it makes for the best days ever! I hope you guys have a great day with him!

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