Consideration

This is a kid fueled post, so be warned I’ll be ranting. Today in her column Dear Margo addresses a huge, close to my heart issue:

My husband and I have a 9-year-old son with severe autism. I cope well enough most of the time, but I would really appreciate your advice about how to handle shopping.

My son may look like a typically developing 9-year-old, but if a loud noise startles him, or if he likes something and wants it, or maybe even for no apparent reason, he will make loud noises or say a few words repetitively, getting louder and louder. He can even have a full-blown meltdown (which is like a temper tantrum on steroids). When that happens, I try to finish my shopping as quickly as humanly possible, grabbing only the bare essentials (milk, bread, etc.) and leaving, apologizing and explaining if asked.

The past several times I have gone shopping, I have been yelled at by complete strangers and one woman tried to lecture my son on proper behavior. I’m at my wits’ end on how to respond. Usually, I end up in tears. If I had another way of managing the grocery shopping solo, I would do it. I already do almost all of my other shopping online or on those rare occasions when I can get a sitter. I would really appreciate any advice you could offer on how to handle this shopping nightmare. — Flustered in Florida

And the thing is, this letter just barely glances off it. My son looks “normal”. He doesn’t look disabled, and even when he is repeating or ticking it’s pretty easy to dismiss it as him playing or just talking to himself (both are self soothing techniques, they are meant to help him remain in a situation that is making him uncomfortable.) The problems we have is with transitions and when we don’t follow through how he expects us to. Like when a line out the door makes us change our mind about going to one restaurant, or if we want to go someplace he isn’t familiar with (or isn’t in the mood for). When we go to the chinese buffet, for example, he knows they have pizza, and chicken nuggets, and chocolate ice cream and every color of Jello (and a neato fountain in the front with koi!) but he knows there is very little he’ll eat there and we always get resistance, sometimes meltdowns, when we go. And we can’t give in, because he does know there is food from him to eat there, meltdowns are just his way to deal with this. It’s not throwing a fit over not getting his way, because he is told no all the time and deals with it. The meltdown is his reaction to stress that overwhelms him. Period. He hates them as much as we do (and often apologizes constantly after having one).

We could avoid situations that stress him out, However 1) We shouldn’t have to, because we have as much of a right to be shopping or dining where we want as anyone else, especially considering that all he ever needs is a few minutes to “reset” himself (and those minutes can be taken in a bathroom, or outside in the parking lot.) and 2) It is essential for HIM to learn how to deal with his own limitations. It is essential for HIM to learn that life isn’t always exactly how you want it. Things happen that you don”t like all the time and you have to learn a way to handle it. As a parent it is my job to actually raise my child to be a strong, capable, and to have problem solving & coping skills. This is one of the hardest things to do and the temptation is to try to force the world into shaping to the child’s needs rather than teaching them to co-exist.

There are somethings you can demand (education, laws against discrimination, gainful employment) and there are somethings that will never be inside anyone’s control (assholes, accidents, bad luck). We fight for the things we have to, but we also have to teach coping and problem solving skills, and maintain a family unit, not stop each individuals existence for the sake for the disabled child. (You risk isolating and scarring any “typical” children you also have, as well as burning yourself out as a parent.)

With few exceptions special needs children can learn to adjust to situations like shopping. They can learn to cope, like my son has by quietly repeating under his breath, playing and joking around, and most importantly by learning the positive side to being in these situations. There should be rewards for good behavior, for self coping instead of melting down and society needs to understand the importance of these kids being part of society, rather than seeking to shove them out and chastise parents for trying to integrate them (or fro having them in the first place).

I’ve been lucky that no one has ever opened their mouth to me about my children’s behavior in public. No, really, those people are lucky they’ve never tried to correct me on my parenting. But I have gotten dirty looks. And I have felt the miserable, center-stage feeling the letter writer refers to.

Never, ever assume that the child is just a brat, or the parent is just a failure. You have no way of knowing the truth based on a brief interaction at a store.