Susan's Blog

Thursday, May 7, 2009

Don’t Play the Game

Years ago, when Nat was around 10 or 11, we were seriously considering putting him into a residential school placement. This was after a year of escalating aggression on his part, and complete bafflement on ours. We suspected that he was in the wrong school setting, a classroom that was a blending of kids with mild intellectual disabilities, in a “regular” (whatever that means) public school building. We were meant to feel so proud, that Nat could “make it” in this program. The Director said to me at the time, “Just think what doors will open for him if he can get his behaviors under control.”

That should have clued me in right there. I remember having that little frightened frisson, for just the briefest moment, and then right away covering it up with my eagerness to see Nat rise above his disability and possibly enter the ranks of those who can pass for normal.

Those were my goals for Nat back then. He seemed to be on a trajectory towards more inclusion, fewer supports. LRE, baby. But the wrong combinations of things — too much Zoloft, too little behavioral management/positive reinforcement, too many clueless professionals in the classroom, growth spurt, hormones — conspired against Nat, against us. Maybe Nat did not feel liked and appreciated in that classroom. Maybe he felt things I could not figure out. We just didn’t know, and we panicked when that school program expelled him, and we learned that there were “no programs open to him” at the moment. And so Nat had no school for about 6 weeks. It is a sad and scary story that I have retold numerous times, and I still have no real handle on it.

I talked to a parent or two whose child had “gone residential.” (That term sounds like “gone postal,” or “gone off his rocker.” But that is what I used to say, not realizing the way this phrase was making me feel, subconsciously.) One mom had a thirteen-year-old girl who had “come after her with a knife.” That was not Nat, I told myself. Deep down, I felt sorry for this woman. I felt reassured that this was not our situation. Nat was going through a rough spot. Nat would “get better.” I also remembered people saying to us, “we’re talking throwing furniture out a window, that kind of thing. Not hair-pulling or pinching,” in order to give us perspective on where Nat was on the aggression spectrum (the latter, not the former).

It is as if all of my life with Nat has been about playing the game “How Bad Is Your Kid’s Autism?” And going through a series of steps forward, and steps backward, like a kind of depressing version of Chutes and Ladders. “He only has Asperger’s. Advance three steps.” But then, “Diagnosis changes downward, to PDD-NOS. Move back a step.” And then, “School system grants 30 hours a week of ABA. Move ahead a step (or back, depending on how you view ABA).” Or, “School system insists he goes into a multi-handicapped (staff not specifically trained in autism) classroom; back two.” But then, “He can play on a regular soccer team,” advance five. Or how about taking a card from the Meds pile? “Clonidine gets him to sleep, advance five steps.” Or, (uh-oh) “Stratera made him go nuts, go straight to Meds Hell and lose a turn.” And don’t forget the entire swamp of alternative treatments where you will go ahead and then back and then ahead and then back while the other person is cured! Is that the end of the game? Is he cured, or did he just have a different kind?

That is not even the end of the game, because some children skip some of those areas of the game board and land in Residential Placement. What does the card say from that pile? In our case, we avoided the issue for years because we “hung on,” as I said in The Book. With the right medication and a different school placement and Special Olympics and the correct alignment of the moon and and and and… Nat came through it.

When our kids do well, we feel somewhat responsible. We credit one thing or another. We feel we have reached the shining end of the game, where at least our kid is fine, not like those other kids.

And when our kids are struggling, and we can’t get any sort of clue about it, we need more help. We might turn to a new treatment. We might turn to a medicaiton. We might make changes in our home environment. We have meetings, meetings, meetings, appointments, EEGs, overnights at the hospital. We get no sleep and we worry, and wonder, how will this end?

We might turn to the Residences at a school we have explored. This feels like we have lost the game. It certainly felt that way to me, all those years ago. I talked to that mom of the girl with the knife and I thought, “There but for the grace of God go I.”

Well, there was no knife, but eventually, there was a placement that made sense for Nat and our family. We all see how he is thriving, knock wood. We are thriving, too, with and without him here every day.

In the updated version of “How Bad Is Your Kid’s Autism,” Residential placement will be a card you choose that will read, “Choose residential placement. Your kid learns how to eat dinner peacefully with others, he is learning a sport, and he seems more confident. Advance three steps.”

The winner is the first one who goes through most of the board and no longer feels like a failure.


Wait for local medical clinic to reassess, lose one turn. Have insurance company deny coverage, go back five spaces or poor house.

I can’t even look at the board without feeling like a failure.

That Nat though, he’s awesome.

— added by Someone Said on Thursday, May 7, 2009 at 11:46 am

Is it possible to go through the board and not suffer from the “coulda, woulda, shoulda’s”???

I’m not convinced.

Thing is… I keep having to reminding myself that a choice I may have made yesterday based on the information/maturity of child/dev of child – today…. wasn’t there yesterday.

Hindsight’s always 20/20 and today’s decision isn’t the one you may have made tomorrow…. but it’s the best you can do today.

All you can do is the best you can…. I’ll tell you when I get over the parental guilt thing too… but I’m betting on “never”. You just learn to live with it.


— added by farmwifetwo on Thursday, May 7, 2009 at 1:25 pm

I can so relate to this post, I have written many times about my experiences and reasons for residential placement…same as you, I was just holding out, getting her through to the next year at our local school system…but you are right, for some kids, residential is the best–or only–option.

— added by Holly Nappi Collins on Thursday, May 7, 2009 at 3:19 pm

I LOVE this post!!

“The winner is the first one who goes through most of the board and no longer feels like a failure.”


— added by Christine on Thursday, May 7, 2009 at 3:29 pm

What a wonderful analogy! It took me back to playing the game. You are incredibly clever.

— added by Donna on Thursday, May 7, 2009 at 4:58 pm

De-lurking to say how much I loved this post, especially the summation.

No matter where your kid is on the spectrum–heck, even if your kid is totally NT–you’ve played some version of this game in your head.

Thanks for putting eloquent and humorous words to it.

— added by Squillo on Thursday, May 7, 2009 at 6:47 pm

De-lurking to say how much I loved this post–especially the summation.

No matter where your kid is on the spectrum–heck, even if your kid is totally NT–you’ve played some version of this game in your head.

Thanks for putting eloquent and humorous words to it.

— added by Squillo on Thursday, May 7, 2009 at 6:49 pm

Standing ovation for that last comment, Susan. Just awesome. I need to send this on to my autism moms’ group. 🙂

— added by ASDmomNC on Thursday, May 7, 2009 at 7:34 pm

Killer post, Susan. Everyone knows what the Candyland game board looks like (and probably how good that game is at teaching turn taking, cause that’s how we putism moms roll), but the autism game board is different for each autist and their family.

Everybody have a great weekend – all the players deserve it. Lisa

— added by Anonymous on Friday, May 8, 2009 at 9:53 am

Between both boys, sometimes I feel like I’m playing 2 games of Twister at the same time. Currently we are preparing for next years middle school transition for Jarrett, praying that Max gets into pre k and waiting impatiently for everyone to herd their chickens back in line so Max’s medicine gets refilled before we run out!!! The specialty pharmacy is waiting for preauthorization from the insurance company (I have not figured out why, since the prescription is good for a year and it has not been that long yet). I called the insurance company and they need his primary provider to call them, which if they had contacted the doctor or just told me would be done.

— added by cameramom on Friday, May 8, 2009 at 8:37 pm

i so agree with adsmom-STANDING OVATION SUSAN. you have an incredible gift. your words are magic and i am glad you share them with the world-thank-you.

— added by kathleen on Saturday, May 9, 2009 at 12:45 am

Oh Susan! This post just hits the nail on the head! We just came through a terrible crisis with Max during a family vacation to Disney World, and the depressing Chutes & Ladders game is such a perfect metaphor for our experiences! Thank you for writing this! Like ASDmomNC, I am going to pass this on to my friends who also have children on the spectrum.

— added by Anonymous on Saturday, May 9, 2009 at 9:52 am

Life itself is a game anyway, but particulalry for parents of kids with special needs – there’s so many hoops to jumpt through, so many decisions to make, so many “what if”s etc. but it really sounds like You’re getting there with Nat and that he’s happy and thriving and that makes you happy too – phew!

— added by Chun Wong on Saturday, May 9, 2009 at 12:29 pm

This post was so comforting to me. Lately I feel as if we are usually on the losing end of “How bad is your kid’s autism (or kids’, in our case)?”, and then I feel guilty for making comparisons.

I love reading about how well Nat is doing, and how things are working out for your whole family.

— added by Mom to JBG on Saturday, May 9, 2009 at 10:37 pm

Happy Mother’s Day, Susan. Love, Tina G.

— added by Anonymous on Sunday, May 10, 2009 at 12:25 pm