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Terri Mauro

My Kid Is Less Dysfunctional Than Your Kid

By December 1, 2008

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It's a familiar enough story for those of us who regularly get our hearts broken by the way society treats kids like ours. A little girl with autism switches Girl Scout troops because the one she's been attending successfully is getting too big. The new troop initially welcomes here, but after one meeting with one meltdown, they tell her mom not to bring her back, saying she's a threat to the other girls. We've heard it all before, haven't we?

The thing that makes the story of Wisconsin Brownie Magi Klages particularly stinging is that the troop she was booted from was specifically started to accommodate scouts with special needs, and the troop leader doing the ejecting was herself the mother of a child with special needs.

I write here a lot about what a resource parents of children with disabilities can be for one another, both for information and support. What I don't like thinking about as much are the ways in which we are sometimes each other's worst enemies. Certainly the disputes within the autism community point up the way in which differing philosophies and theories can put passionate parents at each other's throats. But it gets acted out in other ways every day, whenever the needs of one child conflict with the needs of another, and Mama Bears get their backs up.

I still remember, with a shudder and a cringe, the first time I realized we are not all in this together. My son had made the transition from special-ed pre-K to a full-day self-contained classroom that was supposed to be K-1 but wound up having a share of second-graders, too. I was thrilled when he was invited to a birthday party the first week of school, for one of those older boys. But it became chillingly apparent, before the first bowling game was over, that the other moms were not pleased at what they were seeing from my guy, who needed the sort of help and managing and redirecting and, okay, babying that they clearly wanted their sons to be beyond.

There followed a scene at Back to School Night where these moms railed at the possibility of their children being babied in class; a mass exodus of students to an inclusion class; and the mother of one boy who had to stay in the class telling me "My son doesn't belong in a class with your son." This, although the teacher confided to me that my guy was actually doing better work academically than the older kids. Appearances were what counted with this group, and my son couldn't keep them up.

The silver lining on that cloud is that, in order to appease the remaining upset parents, the school gave my son a one-on-one aide to keep him out of everybody's way, and he's had an aide ever since -- a real boon that would probably have been hard to get without the politics. Truth be told, though, the class was a bad fit for him, and I'd been as stubborn making him stay as those other moms had been wanting him out. The following year, we switched to a different school and track that was a much more comfortable fit, for him and for me.

That coin flipped for me again a few years later when my son was starting a special-needs camp. Great camp, super program, my daughter had attended successfully, but I could tell we were going to have problems during an orientation when the counselors put out a huge drum. My son was enthralled by it and wouldn't stop banging on it, causing screams from a campmate with autism and auditory sensitivity. Neither boy was wrong -- my sensory seeking guy was doing exactly what you do with a big drum, and the other child was defending his own need to not be assaulted by banging. The two of them were just a bad fit for one another, and the fact that the counselor's solution was to expect me to restrain my kid from banging the big drum right in front of him meant that the camp was a bad fit, too.

I'd like to think that if that sensory-sensitive kid came to a scout troop I'd started for my son, I'd find a way to accommodate them both, and not show him the door. The fact is, though, that kids with special needs do not all get along in a happy rainbow way just because they have disabilities. In young Magi's case, she was a child with developmental disabilities in a troop full of kids with physical disabilities, and while it would have been nice if there could have been some tolerance shown, it is possible to have a bad fit even within the realm of children with special needs. Why would we ever think it was otherwise?

What we have to work on, I think, is realizing that sticking up for your kid doesn't have to mean putting a stake through the heart of a parent who's sticking up for hers. Rejection never feels good, even when it makes sense. Situations involving children with special needs are often complex with conflicting needs and interests. If we all can't even work together toward a solution, how can we expect those who don't know what we're going through to give a darn?

Read more: Special Needs News | Site of the Day | Choosing the Right Camp for a Child With Special Needs

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December 1, 2008 at 7:01 pm
(1) sylrayj says:

I can appreciate the rough points… My son often sits beside another boy in school. They’re both more than average, and it’s handy to have them close together so when a teacher aids one, the other can get help too, and sometimes they get along well. Other times, though, they butt heads (figuratively) and it’s not fun for either. They’re both wonderful kids, with great strengths, and are both fun to be around, but there are just times when they’re not in sync.

December 5, 2008 at 4:39 pm
(2) debfjeld says:

My son goes to school in a level 5 setting, which means that 100% of the kids in his school have a recognized disability and an EBD label. It can be frustrating to know that the kid who has been targeting your son for weeks might have the same disability as my own. It makes you feel even worse when my son a week later, turned to a more vulnerable child and repeated the same acts. I was angry on both counts. It helps to meet the kids and get to know them personally. You can then have more compassion for them when they screw up. It’s a necessary component if the kids are going to develop a relationship within that school.

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