Things that surprise me!

Hey all.....

I am writing today because hey, Autism is always surprising.  And let's be real about it, that is Autism.  It surprises you every single day.  I suppose that is why there is no cure....so many kids with Autism are so different.  Making it a daily surprise....

So let me tell you about my JB's week.  Bad and good!  JB had a 24 hour EEG....this is a test where they hook him up to a machine....he wears it for 24 hours.  He has a back pack and all these pads glued to him, connected to wires.  And those wires are connected to the backpack.  When they first started the procedure of gluing on the wires, he was okay.  But then......he got pissed.  Everyone at that moment was a "fucker".....and he did nothing but scream for his mama.  GUILT....I was not there, thinking dad would be the best to do it in case it got physically difficult.  And in fact, they had to strap him down....

That night, JB got to sleep with me.  Horrible night for me.  Every time JB moved, I woke up and moved his backpack......that was important because I wanted to be sure recordings were taking place.  You see, I have never witnessed a seizure but every single time we do an EEG, they record something overnight...while he is sleeping!  The EEG will tell us if he needs to continue medicine for seizures but....in reality, if nothing is recorded...well, who is to say being off the medicine is right????  What if he seizes off the meds????  It is so stressful....you want to make the best decision.  I want JB off meds but....what if he has a serious seizure while off meds??????  What if?

I have always been told not to think about the what if.....but with Autism, you kind of have to.  I find myself stressed out about should we do this, should we not????  It can be obsessive at times because you want to be sure you make the "BEST" decision.   And, honestly, it sometimes just seems unfair to always feel this way! 

So here is what I do.....I eat.  I am so frustrated with myself....I look like crap and I feel like crap.  But I don't know how else to deal with the stress of everyday Autism.  It sucks!!!!!  I am trying to work on myself, or at least I was....then I gave up...I just gave up.  I am in a place where....I GIVE UP!!!!  So sad and wrong.  But people, you have to know that this is true to a parent with a special needs child.  I feel like people don't get a chance to understand...they judge before they know.....Autism sucks.  It is so hard....Yet, at the same time, I would never change my JB because he is honestly so very special.

JB has grown tenfold.  He does things that I never knew were possible....but we have a long way to go.  And that is a-ok.....as long as I keep reminding myself that everything is a process.  That everything occurs in pieces or steps....for us, brushing our teeth is automatic.....but Autism????  NOT!  It's a series of steps....that has to be taught over and over and over.  It is not a one and done people.  It is not!  And sometimes, well, it just gets tiring.  Yet, I love JB more than life itself so I will deal...and I will keep dealing and I will fight and keep fighting....Autism is a daily fight.  It's something you have to handle and emotionally, you have to learn to be strong.  It ain't easy.....

It ain't easy....I will fall.  But I will get back up!

TTFN
Martha