Saturday, May 29, 2010

People want to hear (yes, another pity party)

People want to hear:

that you are making the best of it

that you have faith

that you'll never give up

that Autism is a gift

that you wouldn't change your child for anything

that this experience is making you stronger

They don't seem to want to hear:

that your barely verbal five year old who seemd to be potty trained has started to regress. That he pooped in his underwear while stimming on the deck yesterday then took off his pants and ran through it a few times before I could stop him.

that later that same night he had more poop to make on the toilet (after starting in his night time pull-up)but the second I looked away he reached down to feel it and then wiped his dirty hands all over his clean pjs, his arms and his face

that last summer I worked my ass off getting him to string 3-4 very apraxic words together "I want ___________" and now the ability has completely disappeared.

that I literally want to poke my eardrums out sometimes because his vocal stims are so loud, so constant and so annoying.

These types of things either end conversations or result in an attempt at understanding (like: my two year old got his hands in his diaper once). I really don't know what kind of response I want. Maybe there is nothing anyone can say and maybe I shouldn't bother mentioning these things.

Here is the truth:

I am sometimes unable to make the best of it because sometimes even "the best of it" sucks

Faith? still thinking about that one

no, I will never give up but I have to balance that with accepting reality

Autism is not a gift. My son is a gift but it is delusional to say that something that takes away his ability to function, care for himself and communicate is a gift. Have I learned a lot? Sure. but I would trade it all for one conversation with my son.

If there was a magic pill that would take away Sam's Autism I would get it.

While this experience may have made me "stronger" in some ways, it has made me weaker, sadder, more lonely, and more terrified in others. I am not sure the trade off is worth it.

It has been a crappy week in more ways than one.


Stranded said...

I am with you on this 100%
This is your child's burden and then your burden. It is no gift.

KAL said...

{{HUGS}} I just read this post and I know exactly what you mean. I hope the last week or so has been better.