The kid’s a near genius, and that’s no exaggeration. Wynken could read his own books by the time he was 3, knows more about modern dinosaur theory than most adults, and can distinguish between exoplanets and objects in the Kuiper Belt.
We were accustomed to him bringing home an A on every test. On a recent test, he brought home a very different kind of A: Asperger Syndrome.
Asperger Syndrome is “an autism spectrum disorder (ASD) that is characterized by significant difficulties in social interaction and nonverbal communication, alongside restricted and repetitive patterns of behavior and interests.”
ES: Translation: He can quote you an endless stream of information on a handful of topics. What he can’t do is tell that you aren’t interested in hearing about it after the third sentence.
RS: That was a bit snarky.
I’m sitting here having a conversation between my Rational Self (RS) and my Emotional Self (ES). We don’t always play nicely together and tend to steal each other’s lines, but you’re welcome to listen in.
RS: Remind me when we first find out Wynken had Asperger’s Syndrome?
ES: We didn’t find out about it until he was almost 13. Oh we knew it was something, but we kept getting different diagnoses: ADD, non-verbal learning disorder not otherwise specified (yes that’s a real thing), short-term memory disorder, handwriting dyspraxia, all of which didn’t help very much. And then the kid became a teen-ager -- talk about a double whammy.
RS: It’s safe to say that we’ve been in crisis mode ever since -- just getting by, just keeping our heads above water. We started learning more about Asperger’s, but somewhere along the line lost the thread: never finished the books, never joined a group, never really found the things that “work”. Why is that?
ES: We had our hands full with 5 other Nodlings, including one with Down Syndrome.
RS: Since Aspies have to be explicitly taught social skills and generally have a huge problem with executive functioning skills (making a plan, executing a plan, or seeing the big picture) all of the burden falls on us as parents to “do something”.
ES: That means keeping tabs on your kid 24/7, endlessly repeating instructions, standing over him to do homework, making sure he remembers to bathe, wear clean clothes, use deodorant (teenage boys stink!). It means telling them not to talk so loud, not to stand so close, not to stare at girls, not to keep beating the same subject to death, apologizing over and over to the principal and that enraged parent because your kid said something he didn’t know was socially inappropriate. It means telegraphing every little schedule change to your child who can’t handle change and has intense emotional reactions to daily bumps in the road.
And that is hugely wearying on a person and a marriage -- mentally, emotionally, physically, and spiritually.
RS: I have to ask: why don’t you just [read a book | join a support group | get some help]?
ES: Here’s the thing: people in crisis are unable to help themselves, they are just surviving.
“A study by the University of Wisconsin-Madison reveals that mothers of kids and adults on the autism spectrum experience chronic stress comparable to combat soldiers.” --Examiner.com
RS: No word on the Dads, however.
ES: I can tell you my reaction, because I started writing about the “New Scarlet Letter” over a year ago:
“It is the handicap that you can’t readily see. That burns more than the ones you can see -- like a Scarlet Letter in the mind. If a boy is made in a man’s image, then the man is invested in the boy whether he wants it or no. Yes, they are independent persons, individual wills, separate souls -- but there is something about a man’s son.
I know the struggle is in me, the principal road block in my own mind, in my own heart. How familiar this is, like the first time. Only this seems harder to accept, because it is less obvious. It is my pride that suffers -- cruel heart! Let me be. “
RS: A bit melodramatic, don’t you think?
ES: These are raw emotions. You go find your own.
RS: So what has changed? Why are you talking about this now?
ES: A number of things, I guess. I’m tired of feeling emotionally crippled.
RS: That’s rich, coming from you ...
ES: Easy, now!
RS: Sorry. You were saying?
ES: I’ve spent enough time being angry and frustrated with myself and the boy.
RS: What makes you feel angry about this?
ES: A feeling of helplessness. A feeling that I failed in some way. That either he or I am defective.
RS: [punches ES hard on the arm] Stop that! You know that’s not true. God doesn’t make junk. You’re just feeling sorry for yourself.
ES: Ow. Sorry. Just being honest with my emotions. Guess you’ll have to help me, Rational Self.
RS: That’s what I’m here for: to keep the emotions in proper check.
ES: I thought that was what the Will was supposed to do.
RS: Stop being such a stickler.
ES: Now who’s rich? As I was saying, other things have changed. Wynken has graduated 8th grade and will be entering high school in the fall. It’s a natural break where everything changes for most adolescents. We can’t afford the Catholic high school, so public school here we come.
RS: Is he anxious about it?
ES: Is he ever! I think most kids are nervous about high school, but Aspies tend to be more intense about it.
RS: Maybe you could put the money you would have spent on Catholic school into a program to help him? A social skills group or executive function coach?
ES: Yeah, that’s probably a good idea. It’s hard to know where to start. See that part about chronic stress and not being able to help yourself?
RS: Surely the County, State, or Fed has programs or some kind of help? That’s part of why we pay for public schools, isn’t it?
ES: Yes, but the bureaucracy is a rather byzantine labyrinth. We already got rejected by one agency. The paperwork is mind-boggling.
RS: Lots of people have Asperger’s kids, and they seem to manage.
ES: What’s complicating things is that our son with Down Syndrome has also reached a point where he needs extra attention and special programs as well. And there’s the rest of the Nodlings, too.
RS: Family? Friends? Church?
ES: Yeah, they are all trying to help us, but it's slow going. It’s hard because we don’t know what’s available and what would help us the most. Talking about it is a good first step. We are also learning how to accept help, which is harder than it sounds.
RS: Is it getting any easier?
ES: What I can say is that for the first time in two years I feel like there might be some hope that things can change. I see God working in my heart and attitude. I see some events unfolding although I don’t know their ultimate end. We just got some new neighbors this week who have 5 kids, including a 14 year old with Asperger’s. Coincidence?
RS: There are no coincidences, only God-incidences.
ES: Good thing. I suppose we just need to pray and trust in God’s own timing?
RS: You took the words right out of my mouth.
Got an Asperger’s or other special needs child? How do you deal with it? Inquiring minds want to know!