Thursday, February 20, 2014

Just a Touch of Club Au

Last week, the boys and I were in our local CVS, buying random crap we needed. I was herding them, like cats, as I do, to the checkout, when the cashier told me to take my little CVS card thingy to a kiosk a few feet away to get extra coupons. Morgan volunteered for the task. He loves bar code scanners and kiosks.

The cashier, being ever so helpful and chipper, gave Morgan about rapid five prompts at once. And yes, I told her his name.

"Son, sweetie pie? Just scan your mommy's card! Wait about a minute! No just wait, don't touch the screen! There will be coupons coming out! Go to the right side! See that slot? Now, wait for the coupons! Now, wait and grab the coupons from the side where the slot is, sugah!"

Amused, I helpfully told her, "He's autistic, he might not respond to all of those commands, and you didn't say his name. He'll figure this out, just watch."

Morgan figured it out, flapping happily with this new kiosk and coupons.

The cashier, however, dumbfounded me with her chipper, "Oh! My daughter is a little autistic- a touch Asperger's, so am I. Just a touch, though." The last part was whispered with very wide eyes. I about choked on my laughter.

"A touch, huh? Well, we're fully in the autism pool. We're kind of swimming in it," I replied, "Big A over here."

I thanked her for saving me $17 dollars, herded the kids out the door and have been pondering the exchange ever since.

How is one just a "touch" autistic?

Is it just their left side of the body that's impacted? Perhaps a toe? Maybe just their hair? Does the autism only happen when they put on shoes or take them off?

And what does that IEP look like? I'm dying to know! Do these people have "Since there is only a touch of autism, XXXX will only need a touch of ST, OT, and prompts a touch of the time"? Or is there another eligibility?

Come to think of it, I met a psychic in New Orleans named Rena who claimed she was a touch "of that spectrum thing." Perhaps this explains it. Now I'm just confused.

I've encountered people who deny their children are on the spectrum, despite the neat and long lines of objects all over the house, the strict diet of only three foods, meltdowns, strict schedules, and the fact that their child is still not speaking at age five or six. That's denial, possibly.

I've met people who have claimed that "everyone is just a 'touch' autistic" but have usually brushed them off as an "aw, bless your heart!" thing.

But a "touch," huh?

I get that this is an exclusive club and maybe they don't want to learn our secret hand flap followed up by the acronyms, so maybe having just a touch saves them the work of gaining full entry. They shouldn't be so scared! Hell, it only takes a year or five to get used to all of this. And that hand flap is a breeze learn. Also, we nail that "A-dar" pretty fast. This woman never registered on mine, so I call a false "touch" there.

Maybe this is me perservating on a topic...

Autism isn't the hokey pokey. You don't get to put your left arm in and take it out. Rather, your brain's all in and then you stim all about.

Wednesday, February 19, 2014

No One Really Knows

The thing about parenting autism, no matter how many specialists, therapists, special schools, and so forth you take your child to, is that we, as parents, just don't know what the end game is in our child's development. We don't, do we?

We, as parents, have dozens, sometimes hundreds, of opinions thrown at us of where our child will be at age 18 or 21, or 25- the magical aging out deadlines in many cases for services.

It's like we're being told that this is the finite point of development.

We don't even know what that means, but we fear the hell out of it. 

Parents are told that their nine year old has the emotional maturity of a four year old and that their fifteen year old is intellectually on the same level as an eighteen month old baby. We're told, at times, that our children will never live independently or get married. That they will never work "normal" jobs. The methods of measuring this criteria aren't exactly well explained, but place a lot of fear and anxiety into us because as soon as we hear this information, we feel as if we must do something other than feel guilt and pain.

However, we just don't know what, exactly we're supposed to do. More therapy? Less therapy? Social skills classes? Another school? Meds?

We just don't know, do we?

I wish that those who dole out this advice would understand we worry about the livelihoods of our children night and day. It's what drives us to fill our brains with information. It's what challenges us to find alternate solutions when we're told there aren't any solutions left. This is what makes us lobby politicians and sue school districts; to push for so much.

If you're an expert telling a parent what to expect down the road, make sure your criteria is correct and on spot, not something you've yanked out of the clouds from your "years of experience." Your years of experience might just be you phoning it in and getting something wrong.

Parents, I think, would commit arson to know where their child will be ten or twenty years from now. It's not that we're being given the answers we don't want, it's that the answers are so abstract and seem so rote, that they sound hollow and untrue.

We see these examples of autism success in society and we don't know whether to be excited by the prospect or jaded. None of those examples are held up to us in meetings or appointments, only doom, deficits, low IQ scores, and then a soft example of how well our child is doing. Kind of like a pat on the head after a kick in the gut.

When our discussions, meetings, and appointments are finished, we pull our chins up, devise new plans... and we still don't know. We try to give everyone a seat at the table, listen to everyone who knows "everything," but no one knows a damned thing.

Especially us and them.

Surely the keepers of the proverbial magic eight balls will at some point clue us parents into how they know our children better than we do?

Some days, I feel like the majority of parents feel like this is our eight ball answer:
Image by: Angry Dog Designs

I just hope that's not how it is. People need to do better.

Monday, February 10, 2014

This is Hard

*Editor's note: I'm writing about something I swore I never would within this post. Please understand that I'm doing this not for people to tell me, "I'm sorry," but to make other parents raising autistic children know that this happens to some of us, too. 

I'm jealous of my son's school. Of the teachers, paras, aides, lunch ladies... every damned one of them who see him day in and day out. Why, you might ask?

Because some days I feel like that school gets to see the best of my son.

School is highly regimented and Morgan loves rules. He thrives on them. The color code system of behavior is something he responds well to and he wants his peers to think well of him. At school, he is, I think, "on."

"Morgan held the door open for me today, I just had to tell you that!" "Oh, you're Morgan's mom? He's such a darlin'!" "Morgan's so funny, such a rule follower!"

Yes, he is all of those things. At school.

At home, 80% of the time, he's those things, too. But since he's in his safety zone, he feels free to fully melt down. To lash out. At me. And that hurts me. Literally.

I love my son and I have no doubt that he loves me. We tell each other that constantly and hug a lot.

He loves me so much that I am the person he feels the most comfortable lashing out physically at and then comes to me, while I'm still shaking, and needs to be rocked.

It's rare, but it happens. We both cry, shocked that this swirling dervish has just consumed him again out of no where, but it came from somewhere, as we both know. We try to calm ourselves, him first, me later, and press on.

This is trust, this lashing out only at me, I've been told. I'm thankful it doesn't happen to anyone else, but I'm resentful that no one else "gets" it.

He can be rude. He can be hostile. At homework time, I'm walking on eggshells. I never know what to expect.

Weekends are different. He loves his train movies and going places- freedom.

But during the week? I'm nervous for the landmines that I could trip on.

And it's not his fault, nor mine.

I love my child, autism and all.

But, damn.

This is hard.

Wednesday, February 5, 2014

So Different: Tale of Two Kindergartners

I've mentioned several times throughout the school year how jarring it is to see Bay's work come home and compare, though I shouldn't, to where Morgan was at that same age.

The handwriting is different- Bay's is neat where Morgan's barely existed. The coloring is different- Bay is in the lines, where just this year Morgan finally colored an entire picture. The drawings- Bailey draws everything he sees or imagines and in great detail, Morgan still draws mostly in trains.

My children are so different, it's nearly painful. There is not a favorite son, there are just two different sons, as if they are each from different parents.

In Morgan's kindergarten, we were speaking of him being behind, not communicating, melting down, scripting, and playing "inappropriately." There was the fear of him not retaining information. Basically, there were a lot of deficits to work on and not a lot of strengths shown except his love of patterns and math.

In Bay's kindergarten, we have a child who gets into trouble for talking, who is easily bored and blows through assignments, and who "contributes a lot" to class discussions as his teacher told me after a talk about MLK went a bit sideways with me. He absorbs everything and starves for more. There is no talk of deficits unless it's about his speech impediment. He has a hard time making friends because he blurts out God knows what, usually something he's overhead me say.

I requested Bay be checked for gifted. It hurt, for some reason, to ask. I felt like I was betraying Morgan and all of those years of "well below benchmark," "well below average," and "borderline intellectually disabled" marked on so many tests.

I felt like I was slapping my special needs mom friends in the face somehow.

So I couldn't say anything when I was told that Bay "flunked" the test by 2% . In kindergarten, a child must make a 99% on the test to be considered gifted, Bay scored 97%. I'm not upset by any means, I'm kind of relieved. It means that he won't have advanced classes this year. It means he'll be "regular" a little longer.

But then I felt like I was shorting Bay for not being upset. Am I supposed to be upset? I was told that kids his age rarely score this high, they normally are in the lower to upper 80s, maybe lower 90s. That next year, he'll be retested and likely be placed in the gifted program.

I wonder if the woman telling me thought me strange for not being excited. Or if my terror showed on my face.

There is irony in having Bay tested for gifted while ordering Morgan's three year evaluation to be done for autism, and everything that entails- IQ tests, etc.

There is also pain in that I worry about both of them, but I worry for entirely different way. I like someone is pulling me in opposite directions and it hurts my heart. What happens if, by encouraging Bay, I hurt Morgan?

I'll always encourage my children to work hard and do their best. But what happens when their best makes the other one feel awful? And how do I manage this?