life on the "j" train

Taking a "busy working mom with 2 special needs kids" life one moment at a time

Wheeeee !!!!!!!!!!! July 29, 2011

 

 

Nitro, Kingda Ka, Rolling Thunder, Bizarro, Twister

 

 

You’ll recognize those names if you’ve ever been to Six Flags Great Adventure.  Sure, all of the above will get your adrenaline pumping, but I’m telling you … those roller coasters have nothing on The Jay Train.  There are no higher highs or lower lows or drastic drops or quicker twists and turns.  There are surprises around every corner on this autism ride.  You can try to plan for or anticipate what’s gonna come next but you will get it wrong just about every single time.  And believe me, you get your money’s worth on this ride.  You don’t pay $50, wait in line for an hour and then the ride is over in 2 minutes.  No sirree, it’s free.  You do wait for about a year and a half, maybe two years or even longer, but then once you’re on, you’re on the ride forever. 

 

Last week I was cruising.  Happily sitting in my seat taking in the view and loving what I was seeing.  I was so caught up in the view around me that I didn’t see the big drop that I was heading towards.  Then it came out of nowhere.  Swoosh!  I was brought down out of the clouds and landed at the bottom of a water fall.  I stayed in that funk for a couple of days, trying to catch my breath and swim back up to the surface.  I knew I would come out of it, but I didn’t know when.  I told you … you never know what’s coming next. 

 

Yesterday, we found a therapist who I really think can help Jay.  She introduced some new words to our file, like Apraxia.  I’d heard of it before and even googled it before but until now, it had never been a part of our story.  We’re still not sure that it belongs with us since it’s “hard to diagnose with Jay’s limited words” but it’s something we’re keeping an eye (and ear) on.  She also introduced us to PECS  .  Again, something I’ve heard about but not something that had ever been a part of our lives.  While we (us and the doctor) don’t see it as a long-term solution, we do think it can help bridge some communication gaps we have right now and hopefully we can wean him off it as he learns to communicate verbally. 

 

Jay worked/played well with her and responded to her methods.  We are going to set up weekly sessions for him to get that extra therapy since you know and I know that he doesn’t get enough at school. 

 

CC assured me that his job would allow him flexibility to take Jay to his appointments which have to be scheduled for sometime between 8 & 5, Monday – Friday which is not convenient at all but I’m not complaining.  Just gonna work with it. 

 (Drum roll please) … I think this is something we can afford.  

Let me say that again … I think this is something we can afford.  It won’t be easy.  Time or money wise.  We’ll have to tighten our belts a little bit but this is something we cannot afford not to do.  The doctor sees so much potential in my son.  She thinks he’s at a great age for us to really sink our teeth into therapy.  They have a wonderful facility and it’s only 10 minutes from home.  This is do-able and that’s all I need, I will make the rest fit.  This is 1 puzzle piece that I will force into the slot even if I have to use a hammer and chisel to bang it in there.  It may be a little tight, or too loose, or the edges may be too square for the round hole but we will make it fit. 

 

Add to the hope that Doc gave me, I had a lovely evening with the boys yesterday.  Jay got a new toy which he was thrilled with and he’s been a much more pleasant person to be around in general.  He even helped to clean up their room before bed.  A good day, a good evening, a good nights sleep, a good morning today, it’s Friday and it’s pay day.  We (kind of) have a plan in place for Jay which will hopefully yield some positive fruit and the only plan for this weekend is to relax and spend time together, do back-to-school shopping (I like that sorta thing) and go to a 5 year old’s birthday party on Sunday.  (Ace will love that).

 

Hopefully there are no sudden drops coming any time soon.

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2 Responses to “Wheeeee !!!!!!!!!!!”

  1. Michelle Says:

    sounds really positive, hope it works out to be a do-able regular therapy session for Jay. Big hugs xxx

  2. rhemashope Says:

    PECS was (and still is) a great tool for my daughter! so i’m excited for jay!

    i so get the roller coaster thing, you describe it perfectly. hugs to you. hope the weekend is refreshing.


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