Wednesday, March 11, 2009

What Autism Really Is (not the cute textbook definition)

There's a new post up over at Sweet Schooling, about getting your child to write: how to help, along with some good resources. Check it out. Don't worry, we'll wait! AHem. Ok, on with today's post...

You've heard the textbook definition of Asperger's, "A pervasive developmental disorder ...distinguished by a pattern of symptoms rather than a single symptom. It is characterized by impairment in social interaction, by stereotyped and restricted patterns of behavior, activities and interests, and by no clinically significant delay in cognitive development or general delay in language. Intense preoccupation with a narrow subject, one-sided verbosity, restricted prosody, and physical clumsiness are typical of the condition."

but I want to tell you what it means in our life.

It means a lack of self-regulation. for my 7 year old. Going from 0-60 in intensity in about five seconds. Not being able to police herself and her reactions. Hit and/or scream first, ask questions afterwards. It means 24/7 monitoring her choices and constantly teaching her better ones. This includes teaching her to know her bodily reactions, her adrenaline levels, her anxiety.. (Incredible 5 Point Scale, How Does Your Engine Run?)

It's not being able to be patient, at all. Needing something right now. Think: toddler parenting. If the need or want is important enough to verbalize than it must be taken care of RIGHT NOW. Or else.

It's speaking in a sing-song voice, breathy, with no support from the diaphragm. Sounds very toddler.

Needing routines to go "just so" and when they fluctuate, noticing and struggling. Sunday, we didn't go to church. After church, daughter gets a donut. No church, no donut. She wanted me to drive to the donut store yesterday and get donuts. This caused no end of struggle.

Lack of spontaneous activity. She must have some sort of notice before I just spring things upon her. I always wanted to be the "fun mom" and do spur of the moment things. When my eldest was younger, I used to take her on "Pajama Runs" which was a surprise trip after lights out to dessert, in her pajamas. The youngest would never do well with that kind of diversion.

For my 10 yr old....It's asking a hundred times a day if he can play _____________ or go _______________ or buy _________. It varies, depending upon his current obsession. It can be an activity, a subject matter or a food. No matter what, it is freakin' annoying! He is like a train that is barreling down the tracks, one-minded, a machine. The only way to head it off is to switch tracks completely. As he gets older, this isn't as easy as you might think.

For my 14 yr old, it's being a perfectionist to the point of making herself sick over assignments. She doesn't pick up shades of gray, and it all must be one way, that's the only way it can be seen. There is little wiggle room in her opinion. Some would call this rigid. In fairness, as she gets older, she is becoming a little less...structured in her thinking. It still is on a daily basis. One of her favorite characters is Sheldon, on Big Bang Theory. Coincidence?

It's not only something my children must do. Navigating these waters, these sink-or-swim rapids is often my own journey. And if I am sick, or just not feeling like dealing with red is blue and green is the new black thinking?

Well, it's crazy-making.

I wish that I could say it's always fun, or enlightening. I wish I could say I was a great mom 100% of the time. But the truth is, half the time (and more some would debate) I am just blindly doing what feels right. And, on nights like tonight, when I have been fighting the after-effects of the flu, including laryngitis, I am just...

Tired.

T, who sometimes can't even get the words out to explain it...have you been there?

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6 sent chocolate:

topsytechie said...

For me it isn't the quirks and qualities of the Aspergers that cause me the most trouble. It is the watching from the sidelines at the incredible difficulty (yea, near impossibility) of being able to create friendships and connections. And then watching the loneliness takes its toll. That is definitely the toughest part for me as a mom.

Mom said...

How funny to run across this post at this moment -- I was just thinking about my 12-year-old daughter's current obsessions, each of which would cost me fiftybillionty dollars if I caved in. It's exhausting. Last night, I finally asked her to quit speaking to me because I was getting a stabbing pain behind my right eye. Of course, I still think she's probably the coolest person I've ever known, and it breaks my heart that her classmates exclude her.

TX Poppet said...

It's like you've been recording a day in my house. Today girl informed me that she is going to cry herself to sleep. What is so tragic? So overwhelming? Next fall she will have an off campus golf class and she is planning the thousand different ways it can go wrong. The Spectrum can bite me.

centralillinoisian said...

I am so glad to have found you. It was a long trail through other blogs that I read on a regular basis and here you are. If you check out my blog and read the first few posts (clear back at the beginning) you will see why I am so happy to find other moms with kids "on the spectrum". I find it silly to say that cuz all kids are different whether they have a dx of anything or not. I just have one boy who is 8 years old. He was dx with Autism and referred to a behavioral doctor who called it Asperger's instead. Whatever you call it I was/am glad to know I am not crazy, that my kid is not crazy either.
P.S. my blog is not only about my life as a parent, it is also about saving money and time in my life. When my son comes home, it will probably be more a even mix of life and savings. I look forward to reading more of your posts!

D said...

I agree my 6 year old is autistic and he does not have any social skills. He is in alot of therapies and goes to a special school. It is hard to see him with typical kids his age. It hurts sometimes.

Newenglanddeb said...

You have no idea what this post meant to me! I'm reading it on my break at work and feel like crying! It is the rare person strong enough to look another person in the eye and say what you said. You totally get what kind of hell I am going through. My 15 yo adopted son has Fragile X, which has a lot of autistic-type tendencies. On top of this he has Reactive Attachment Disorder, pica w/rumination, Oppositional Defiant Disorder, Growth Hormone Deficiency. I did not sign up for this. Nobody told us he had FRAX and on and on. Sometimes I just resent being in this position. I have another adopted daughter (13 yo) with Congenital Cytomegalovirus w/just minor learning issues and extremely mild CP, as well as 2 older biological kids (g 17, b 20). The worst part is that I can't and never have been able to parent my 15 yo son the way I parent the other 3 and it's sad, heartbreakingly sad. And, for the longest time I thought I should be able to handle him just fine. After all I've taught significantly disabled middle schoolers for the past 7 years and *know* stuff. The difference is, at work I'm a SPED teacher and send the kids home. At home, I can't. Thank you for having the courage to be real.

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