Thursday, August 1, 2013

24:15 The New Scarlet Letter

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.” 

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!


LarryD said...

Nod - please email me. Thanks.


Nerina said...

Hi Nod,

I have five kids and my oldest, an 18 year old...well, MAN, was diagnosed with AS when he was five (which frankly was an improvement given the predictions made when he was three). Believe it or not, we are sending him off to Hillsdale College in two days (my RS is telling my ES to "stop crying")!

Anyway. Your feelings of being overwhelmed are part and parcel of being a Dad, in general, and having two special needs kids, in particular. Every parent I know with an Aspie articulates very similar emotions.

The stress IS chronic along with the feelings of guilt and anxiety. I know I spent years feeling like I wasn't doing enough for my son. There were books to read and websites to visit. Diets to try and behavior modifications programs to implement. I felt like I had become an OT/ST/PT! And one day, I just said "enough!"

Like you, I had several other kids to care for and they needed my attention too. My husband and I made a conscious decision to treat and raise Matt with the same approach and values as with our other kids. For us, that meant clear boundaries, structure, predictability (let's face it, ALL kids benefit from this as do their harried mothers). It also meant we spent a lot of time together as a family playing board games and going to the park (I spent many, many hours at the playground trying to get my sensory-challenged child to navigate simple playground equipment). We also just about eliminated screen time during his younger years which benefitted everyone.

His siblings were a huge influence on him and we never allowed him to "check out." God is good in His plans and he provided the siblings that would slowly draw Matt from his world into their's. My 16 year old daughter, when she was 3, would say to him, "I am NOT playing Thomas again. I want to play (insert activity) and you are doing it too." (BTW, a fascination with Thomas the Tank Engine should be part of the DSM-IV manual).

My son went to public school from K-12 and did really, really well. He is very intelligent, possesses an almost photographic memory and retains a ton of information in his brain. He has plans to go to law school after undergrad. We found organization was a difficult skill for him so we helped him come up with ways to keep things straight, but he eventually came up with a system that worked for him.

One of the best social things we did for him was to put him in Boy Scouts. Having to be with male peers every week gave him more social awareness (although, let's face it, some of the social behavior of prepubescent boys isn't pretty :)). He eventually reached Life Scout and was the Senior Patrol Leader.

There's much more to say, but let me leave you with this: God gave you and your wife this particular child. He knows what He is doing and He knows what you can do for your son. I'm not saying it is always easy and frankly there were days I was more than ready to throw in the towel (don't even get me started on the challenge of toilet issues), but somehow we muddled through. I would give yourself a metaphorical and literal break when you can (easier said than done, I know) and focus on what is truly important - God and family. Feel free to e-mail with more questions.

Nod said...


Wow. Thanks for that feedback, that is huge. It really helps to hear from parents who have "been there". Really.

I laughed when you said "fascination with Thomas the Tank Engine should be part of the DSM-IV manual" -- so true!

Nerina said...

Regarding "Thomas": I've talked about this fascination with others who either have Aspie kids or work with them and we think Aspies like him so much because the facial cues were so clear. If Thomas and his friends were happy - they had a big smile on their face. If they weren't then they could tell that too just by the look on their engines. There was no guessing. Also, I think the repetitive motion of watching the trains travel the railways was oddly comforting to my son. He used to try and imitate it on his own. When he was really young, he used to watch Thomas while flicking his finger in front of his eyes. His sister, who watched with him, used to mimic the move and thought that was how ALL people watched T.V.

Hang in there, Nod. My best to you and your whole family. Oh, and my 14 year old will be joining you in the upcoming Football Frenzy. He's a Packers fan.

RAnn said...

Been there,done that, or at least close. My son's label is PDD-NOS and he got it when he was 8, after going through speech-delayed, developmentally delayed, sensory integration dysfunction and ADHD and Asperghers. When the ped. dx'd Asp., he said it was the diagnosis of the week and that all they could do was treat the symptoms.

My son is 21 and when he was young, insurance didn't pay for much. We paid for the adhd meds for years, any speech outside the school system was on our nickle, as was the OT. Kids his age were the first in the wave and partly because of the relative lack of predecessors and partly because of the lack of insurance, we've found it difficult to find services and then have had to weigh the cost vs the benefits.

At this point I'd say my son is 21 going on 12. He'd spend his whole day in front of screens if we'd let him. He hasn't been able to find a job (and yes, the state is helping but we've been looking for two years now) and he doesn't want to go to school. He is in a job skills program where we pay them $40/day to make him work in "environmental services" at a large health club. On the other hand, I can leave him by himself or put him in charge of his sister. He can drive the car on familiar low-speed routes. He is happy with his life, even if we aren't. I'm sure he'll be here to push our wheelchairs when that time comes.

Kathleen Basi said...

I'm so glad you've gotten good feedback from others. I have DS but not Autism spectrum in my house, thank God. But I totally sympathize with "crisis" mode. When you have little kids coming up behind the child with special needs, you do what has to be done now and no more. We'd put off ENT and thyroid tests on our daughter because doctor visits were so hard, because there were so many other things to deal with for the younger kids, etc. Sooner or later I guess both you guys and our family have to take a deep breath, assess what has to be done, and do it. I will pray for you. I don't have as heavy a burden as yours but I have enough to empathize.

Nod said...

@RAnn, thanks for sharing your situation. We are still learning about Asperger's and the help that may be available. Where there's life, there's hope, right?

@Kathleen - I remember now you blogging about your DS child. I can empathize with you as well! We've got it at both ends of the spectrum, but there is a lot of similarity in the middle. May God bless you and yours, and thanks for the prayers.

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