On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Monday, March 28, 2011

My Aspie-sized life

"Mom? Mom. Mom I was ..." This is how AB starts every conversation, usually from another room and in a quick, rapid-fire speech that is either too loud or too quiet and includes a speech impediment to boot. Once he finally makes it to the room of the house that I'm in, he will be wrapping up whatever thought he was attempting to convey, assuming I've not only heard every word but UNDERSTOOD every word. And all I'll get is the tail end of it, "... so can I Mom? Mom? MOM. MOM!!!!" Of course, none of that is said without *bump bump bump bump bump* of his belly or legs against whatever furniture or obstruction he can bump and *swing, swing, swing, swing snap* of his arms past his warm-up pants finished off with a touch to the top of his head and a jerk to the side like he's trying to crack his neck.

"Mom? Can I?"

And I'll sigh and look him in the eye and say, "Son. I have NO idea what you are talking about." Usually, that's the truth but sometimes it's not. Sometimes I've caught wind of the whole bit but I refuse to be spoken to from across rooms. I'm not his maid or his servant. And furthermore, such social cues are oddities for people with ASDs to begin with so the last thing I want to do is reinforce these behaviors by allowing them. "Stand still. Look at me. Please start from the beginning, slowly."

Half the time he'll get agitated or angry and say something like, "ugh! I said it already!" or the one that makes me snicker, "you heard me, I know you did!" especially when I DID indeed hear him. That's not the point. The point is that he needs to learn how to communicate properly.

The other half of the time he is pacing, swinging, mumbling, looking one hundred other directions, scratching his head, talking quickly and trying to ask for what he wants. The best part? If I agree to what he wants, he skips and says very quickly, a staccato beat, "YAY!" If it's something he thinks is REALLY awesome, he hugs and kisses me.

I love it when he hugs and kisses me. *big, warm grin*

His YAYs are so catchy that I find myself doing them. Most recently I was at the pharmacy (ok, back up. when am I NOT at the pharmacy getting meds for my kids? It's a joke now. The pharmacists, ALL of the staff at CVS, know me by first name. geez.)

Back to the story. Medicaid likes to block us out from refills until we only have 3 pills left but sometimes that means I'm making five trips a week to the pharmacy (thus you know the reason why they all know me so well.) Recently, in desperation, I showed up with a bunch of nearly empty vials in hand and said, "please see if medicaid will process all of these ..." and the pharmacist finished my sentence.

"... So you only have to come back once?"

"uh. yeah." i rolled my eyes. She processed it in the computer and assured me that they all went through. "YAY!" I shouted with glee and hopped,just like AB. She looked at me funny. "um. yeah. Ok. sorry. That was, uh, very autistic of me, wasn't it?" She laughed. I love that my pharmacists know that I'm the weird mom with the ASD kids (among other issues.)

Every morning AB dons his AFOs. I think we're on pair five? It's time to fit him for another pair, his toes are hanging off the ends. I used to let AB put his AFOs on by himself but they became a bone of contention for him so now I help. I help because I use it as leverage. "AB, if you put your dirty clothes in the laundry, I will put on your AFOs for you." I do something like this every morning. It's not because I WON'T do it for him (he knows I'm going to help him either way.) It's because he needs a little motivation. He's not a sticker-chart kid. Could give a flying flip. But dangle a little carrot that he can easily snatch up in two minutes worth of minimal effort and VOILA! I have complete compliance. And when it comes to those dang AFOs, I NEED compliance. He wears them for toe-walking but at this point, it's for prevention and not correction. No. AB will toe-walk regardless, it's a sensory issue. What I'm trying to prevent is arthritis and wear and tear on his hip, back and knee joints.

Today, AB was Captain Sensitive. This is what I call it when no one can breathe around him. Or move. Or wiggle. Or giggle. Or sing or talk or bump. Or anything. "AB. That's not the rule." is what I say first. For instance, WG has little legs and will push on the back of the middle bench seat in the van so she can scoot her bootie all the way into the seat. AB screams that she's kicking the seat. Literally, screams it and often cries about it. "AB. That's not the van rule. WG is getting into her seat." *more screaming and crying from AB* "No son. The rule is WG can't kick it while the van is driving."

But when it's Captain Sensitive day, forget it. Rules or no rules, he's gonna be a grumpy Gus. How do we fix Captain Sensitive? input, input, input. Today, adaptive swim fixed it and when he emerged from the pool he was Captain Pizza Man. Literally, he got out of the pool and walked into the waiting towel I'd held out for him with, "Momdowehavepepperonipizzaohwaitwedoit'sinthefreezerthethreeminuteonemomcanI?"


"yay" kiss, hug.


Other days he's "Captain First". He has to be first. Period. Out of the van first, into a building first, onto the next lane in the grocery store first, into an elevator first. First, first, first. It used to drive me nuts. I used to try to curb this behavior. Now I only correct if he's not holding a door open for the person following him or if he pushes another person out of his way (which he'll deny, btw.) I'm not sure why he's Captain First. I just know that if I don't let him be first, it's going to be bad. Bad as in knock-down-drag-out-require-a-full-body-restraint-in-public-and-the-store-manager-is-going-to-come-and-check-on-us. That kind of bad.

We were going to the hospital recently (ok, back up. we're always "going to the hospital" for some thing or another - it's a fact of life for our family so we're over it now). Anyway, AB knew his way through the maze of corridors to get to the geneticist's office. WG was annoyed because he pushed past her and was first, again, his hand trailing the wall because duh, he has to be touching something. WG said, "ugh. mom. why does he always get to be first?"

"sorry kiddo. It's his thing."

"But it's not fair."

"yup. you're right. but go ahead and try to stop him."

"mom. you know I can't. He'll get mad."

"yup. he's Captain First."

She giggled and shrugged her shoulders then sighed, "yeah, that's just AB alright. Captain first."

Other "input" we use or have used:
(by "input" I mean sensory input - AB needs lots of stimulation and deep input)
1. desensitization brushing
2. swinging
3. vibrator chair
4. compressions
5. hippotherapy
6. marbles in putty
7. rice tray
8. trampoline
9. swimming
10. rubbing his head
11. weighted vest

Many people assume that persons with Aspergers have a higher IQ. This is true for some but isn't true in AB's case. It makes me frustrated that with all the media about ASDs, there are still so many stereotypes. I'll tell people that AB has Aspergers and they'll begin telling me all about the high-paying jobs he'll be able to do because he's so smart.

AB's IQ is marginally below average. At one point we thought it was just above MR (mental retardation) but a later IQ showed a composite in the 90s. AB is a puzzle because he is actually symptomatic for his ASD. His true Dx is the F-G syndrome, a sex-linked genetic abnormality, in addition to his chromosome 19 duplications. AB's development is altered, including severe (but currently mild thanks to medications) GI issues. Of course, right now we're in the wait-and-see game about his rapidly advancing, early-onset puberty and whether or not he'll end up with seizures too. He has lesions on his chest that can only be seen with a black light, he has very definite mood swings and he has learning impairments. AB's future will likely be group home or assisted living or home with mom and dad helping us out with the business in some capacity.

I don't get to talk about the challenges we have with AB because Sissy's challenges overshadow his. Suffice it to say, all on his own, AB can be a tough one but honestly, I don't mind. I'd raise more like him if I thought we could adopt again. I wish for all the world that Sissy's issues were more like AB's. Dual diagnoses? No problem. I'm on that.

But RAD?

Sinks me in a skinny minute.

Here's to my totally awesome son who,at the moment is doing just fine. If you have any questions or concerns about your own ASD kids, ask away! I love to help and share what has worked for us in the past. And now, after a very long time, I'm finally going to watch the movie about Temple Grandin.


Mom to Four said...

You amaze me! Lucky boy to have you :-)

cinch said...

Your son is truly a good kid. I know he can be a handful some days but the blessings hopefully outweigh anything else. Love you guys

Amy said...

Loved Temple Grandin. I love being able to read your stories and relate to it. What is a rice tray and marbles in putty?

GB's Mom said...

I don't think I told you how peaceful and serene all the blue on your blog is! I am glad you are getting a chance to focus on family life with WG and AB. You will be in my prayers as you see Sissy tomorrow. {{{Hugs}}}

Integrity Singer said...

@ amy - ooo ooo! I get to teach something! rice tray - for a long time, writing was really hard for AB. OK. it's still hard but he's much better. ANYWAY, we'd put rice in a cookie sheet and he would write his spelling words or his math facts in the rice. or shaving cream on the bathroom mirror. same principle.

we also would have him STAND in a bowl of rice to get sensory input while he wrote on a piece of paper taped to the wall.

marbles in putty - great for getting out that tension! i mashed together six eggs of putty and shoved those one-flat-side decorative marbles into it. Then when he's stressed, I toss it at him and he has to pull and pull and pull to get the marbles out. if he's still stressed, I ball it all up and have him do it again. When I was a teacher, I had an Aspie student do this while I taught - he learned BETTER pulling the marbles while I lectured than if he sat there trying to take notes.

kisekileia said...

Does he toe-walk more on stairs? I always have, although I've never toe-walked enough to cause problems.

I'm the classic high-IQ AS type. Unfortunately, if your executive functioning isn't good enough to manage university course work well, your chances at those high-paying jobs will be limited. My B.A. took 9.5 years and I graduated with a C average, despite Harvard-calibre SATs and stellar high school grades. Job interviews are also a huge obstacle for a lot of Aspies, because of the expectation that you'll portray yourself in the absolute best possible light rather than being forthright about your shortcomings, and because you're essentially being judged on your ability to read the interviewer's mind about what answers are desired.

Sally said...

Ack! I just wrote this long comment, and I don't know where it went!

Thank you for this post! I love it! You are way ahead of me, I have so much to learn!

Life is difficult with my Aspie, but for some reason it is so tolerable. I think the attachment is obviously the key. :) :)

I am totally totally with you. Other people think my Aspie child is impossible and my RAD child is a dream. Ha! Little do they know...


THanks for posting!

Integrity Singer said...

@ kisekileia - toe walks regardless. and skips which, from what I understand neurologically, is essentially the same stim. it's not something he pays much attention to, that is to say, it's never bothered HIM. But unchecked toe walking for some becomes short hamstring and tendon issues and of course, arthritis and joint issues in adulthood. The skipping? Eh, shoot. I still skip once in awhile. it's fun. I like the way the wind sounds in my ears when I'm skipping so I imagine it must be the same for AB. and if not, at least I'm trying to connect with him. :-)

thank you for being open in this forum about your personal life. you didn't have to be. I appreciate it though. And I appreciate you.

kisekileia said...

You're welcome, and thank you. :)

Cyndi said...

I totally agree, I will take Down Syndrome, Traumatic Brain Injuries, CP, and all the rest that my kids have, even Fetal Alcohol Syndrome, just get rid of the RAD.

Sally said...

kisekileia, that describes my husband exactly! I have coached and coached and coached him. And redone his resume. He is finally in a very high position, but there are certain personality types that just do not take to him at all. Like all of us I suppose. But yes, that is a perfect description of my husband (who has aspergers - along with my adopted twin daughters!)

Tara - SanitySrchr said...

Temple Grandin came in the mail for me to watch. We have been watching the Ingenious Minds series on the Science Channel. Surprisingly, it was my husband's idea. This has been a source of amazement for me, and everyone else in the house. It also was a beneficial piece I've used in my Ed classes. ASD is truly a puzzling thing for, namely because I know so little about it.

I am curious...what is hippotherapy?