Unintentional, but still irritating--profound observation from my15year-old

Last night while trying to sound enthusiastic when Weston answered a math question right on his homework, my oldest spoke up and said, "You know, Mom, if I was an 8 1/2 year old kid trapped in a body that worked like a 4 year old, I'd be irritated when people treated me like a 4 year old!"  This was the catalyst to a great conversation, (after math was completed, of course).

I think we're all guilty,...me, dad, his brothers, his grandparents, his school staff, and even his peers (although they probably do the best job) at one time or another, of talking down to Weston, of treating him MUCH differently than we would any other 8 year old.  This is unintentional, but it doesn't do Weston any good.  And, my older son is right, maybe he does find it irritating and condescending but just can't communicate that.

We need to not only assume intelligence, but we need to assume age-appropriateness.  He is an observer -- he will mimic our speech and actions, and he will only meet our lowest expectations.  We need to speak to him in proper English; we need to play with him as we would other kids his age; we need to have the same social expectations that we would for other 8 year old boys (he'll be a 3rd grader next fall; do we still want him to greet people with hugs?  Does he still need to hold hands with school staff in the hallway?  Should we use voices or language for positive reinforcement and praise that we would reserve only for very young kiddos?).

...so instead of being SURPRISED that he can do a task that's age/grade appropriate, I think we should affirm that it was a job well done and that we knew he could do it.  I think we should teach him to use and ask for hand shakes, high fives, and fist pumps instead of hugs and I think we should encourage him to use his speech to tell others of his progress and let that be the internal motivator to do well at subsequent tasks.

If we don't and simply do for him, talk down to him, and reduce our expectations, then we undermine and take away his dignity! And that is unacceptable.

Only Special Moms

Who else is up texting at 2 a.m. after falling asleep somewhere other than their own bed?

Special moms of course!

When I heard the text come in early this morning from my resting place in the hallway, I thought it could be bad news from my mom, but NO, it was my good friend (another mom with a kiddo with autism and other special needs) who had awaken from her latest resting spot in her son's tent bed because she remembered she couldn't make our breakfast date this morning.

Just another way in which we're "special"  :)

What being sick taught me

Feeling sick is never fun, but after two days of being pretty much out of commission and sequestered to the basement, I did learn a couple of things.

First of all, always count your blessings! Don't take moments for granted- does anyone ever think "this might be my last shower, my last meal, or the last time I get to hold my loved one" or are we more apt to just rush through the moments? I'm thankful I was able to rest & recover quickly and I'm grateful to my husband and oldest son who stepped up to take care of the 3 sickies and take on "Weston duty."

Secondly, I need to create a "Weston manual" as a cheat sheet for family members for when I'm down and out (or unexpectedly worse). As the stay-at-home caretaker, I've assumed primary responsibility and contact with the pediatrician and other medical specialists, the school staff, the behavior consultant, and therapists. I typically administer Weston's meds and I make sure he follows his gluten/casein free diet and maintains a regular bm/ hygiene schedule.

While everyone in the family observes these things, no one is typically on it 24/7 except me. And just like there's no way I could step into their roles easily--I'd have a heck of a time with AP Calc for sure, and I have no knowledge about the coal business, but I might do okay as interim basketball coach: I've watched a lot of games!

So I've added the creation of a "mom's binder" to my to-do list.

Be Happy

I can't help but smile when Weston begins to snap his fingers and sing, "Don't Worry, Be Happy!" especially when it's SO appropriate for the moment we're in.  Tom Cremeans and his message was not lost on this young boy...lots of truth in 4 words particularly when spoken from Weston.  Ooo, ooo-ooo-ooo, ooo-ooo-ooo, ooo, ooo, ooo, ooo, ooo

Intervention vs. Inclusion

Can you have both intervention and inclusion?  How do you get everyone on the same page...medical staff, therapists, teachers, etc...?  Who do you believe?  What philosophy do you adopt?  How do you prioritize when you have so many things to work on?

Weston NEEDS both intervention (maybe even intense) and inclusion!  BUT...he has pockets of skills and holes in all areas of his development...Have we missed out on correcting some of his deficits because we have a mix of diagnosis and only came to look at autism so late in the game?

ABA has helped us look at his behavior and ours and certainly things have improved but we still have such a long way to go in many areas including compliance.   While early intervention has helped Weston to continue to make small gains, I wonder if it also developed some bad habits in the way he responds to prompts, etc.  Must we start at the very beginning of everything again in order for him to "get" stuff...or can we find a way to fill in the holes and take advantage of what he does know and what he is interested in?  I think this is who he is...can we find a way to bridge his knowledge of sports with how to communicate socially?

Some days I think I need an expert in autism, ABA, and apraxia.
Some days I think Weston just needs to hang with his friends and be a boy without the baggage of therapy, homework, seizures, procedures, etc
Some days I think Weston's best chance is to take a "sabbatical" with one of the "best-of-the-bests" (whoever that might be and how do I find that person) and spend a year in intense educational, social, communication therapy and then "re-enter" the inclusive world.

I wish the answer was clear...