Love, Labels, and Legitimacy

by Tracy Blom

love, labels

For years, I thought my twin boys were simply misbehaving. They were smart. At three years old, they could talk about black holes, but at six, they couldn’t seem to remember not to lick their classmates. It seemed they were constantly in time-out and being scolded. No reward was incentive enough to make them behave the way I expected. No amount of punishment could make them behave the way I thought they should—the way other kids their age behaved. I read countless books on child rearing, looking for a solution, but my husband and I were already doing what we were supposed to be doing. We were consistent in consequences and persistent in training. I couldn’t figure out why they were learning everything except how to behave and why they seemed so different from other kids.

When I would reach out for help in frustration, everyone assured me that they would grow out of it. I was told I was just overreacting, that my expectations were too high, and of course everyone added that it was just harder because there were two of them. The last thing I should do, I was told, was to seek professional help because all a psychologist would do was label them.

Whether to label a child is a controversial subject. I believed ADHD was over-diagnosed, and that a good dose of time outdoors would cure most of it. I was puzzled over why Autism rates seemed to skyrocket all of a sudden and why one would label a child with something like a “disorder” when it would limit them.

It was when the people around us began to label our boys (with not so nice labels) that we decided we had to be proactive and find the appropriate diagnosis for them. By this point, I was no longer afraid that a label would limit them. It was the labels that others were using that was limiting. After all, words are powerful.

Last year our boys were diagnosed with Sensory Processing Disorder and Asperger's Syndrome. So over the past year we've reframed the behavior, not as misbehavior, but as a normal reaction to all the (over)stimulation of life. Now we work on helping them have appropriate and helpful responses to the stimulation as opposed to the hitting, pushing, yelling, etc.

Now that we’ve given the behaviors a name, it has given their challenges “legitimacy” to those around us. Instead of being angry with our boys, family and even friends are now reacting differently to them. Instead of scolding, they try to redirect them. Family and friends are asking us how to help the boys. That is tremendous improvement, because parenting these kids is exhausting. It's nice to finally have allies helping rather than people whispering judgments while I try to maintain control of my kids. Plus, with a name, people can
educate themselves as much as they're inclined. My sister even began reading blogs of adult Aspies to get a better insight into how to interact with my boys.

Most importantly, having a label has helped us to know how to better to help our boys. First and foremost, we quit thinking in terms of “if we discipline them enough, they will learn how to behave.” They are smart. They learn quickly. They know what they're supposed to do and not supposed to do. This was not a case of their needing to be disciplined to learn. This was their way of communicating that everything was Too Much and that they needed help. Now we try to help them manage their reactions to all the stimulation and help them recognize the signs before they get overloaded.

Some of the things we’ve found helpful:

  1.  Before an event, we give them as much information as we can: what they'll see, who they'll see, what it will sound like. We take noise dampening headphones if it will be loud.
  2.  We discuss what we'll do if they get too antsy to sit still or too rowdy. Plan A: sit at the back of the group away from the other kids. Plan B: take a walk around the hall or someplace quiet. Plan C: our occupational therapist suggested suckers, gummy candies (we do organic brands to avoid HFCS and food dyes). Plan D: (when it's cool outside) we go out into the cold, which seems to help one of my boys a lot.
  3.  We try to always have a safe, quiet place where they can regroup. One of my boys likes to hide in a small space if he gets too overloaded, so I identify, ahead of time, a table he can crawl under, a bed he can hide behind, a room he can go to.
  4.  We don't ever go anywhere and expect to get to let the kids play while we chat with the other adults. Our reality is just that we need to be close at hand to keep an eye on things. I'm sure that will change at some point, but right now, it is how it is.
  5.  Leaving is always an option. Not as a punishment, but as an alternative to being overloaded. I just tell them if it's too uncomfortably loud, busy, etc. and it's too hard to stay regulated, we can just leave and try again next time. If I don't make a big deal of it, they usually don't mind. Sometimes I have to make a judgment call and pull them away from something when they want to stay. If I know they are overstimulated, and letting them stay would be setting them up for failure, I will pull them out.

Far from limiting them, having a name for the way they experience the world has in fact opened more of the world to them. Now that we have the tools to help them, we can venture into new situations without the same fear and worry that we used to have. And when things don’t go well and the tools don’t help, we have a backup plan and if need be, we leave. But now we don’t leave under a cloud of failure and shame; we are not running from anything, we are simply taking our boys to where they can be calm, regulated, happy, and successful. Once we realized that our boys are experiencing the world differently, and there is a name for it, our lives (and theirs) changed for the better.

cubscouts

Our experience in Cub Scouts is a clear example of how knowing they are on the autism spectrum has been helpful. Our pack last year, before we had the diagnosis, was a laid back group with unstructured meetings and lots of rough and tumble games. One of our sons had an especially difficult time at the meetings. As a result, he was seen as disruptive and disrespectful by the leader and was bullied by a fellow scout. Each week my husband and I held our breath, hoped this would be the week when he was able to “control himself” and each week we were all met with disappointment. At the end of the year, our son was seen as such a behavior problem, we were asked not to bring him back. This year, knowing their challenges and knowing they are on the spectrum, we chose a different kind of Cub Scout pack. This group has not one, but four leaders, very structured meetings, keeping the boys’ minds engaged for the full hour, and they encourage all parents to be actively involved, so we are able to shadow the boys without bringing attention to them. And the biggest difference is that the leaders have approached us to ask how they can better accommodate the boys so they feel comfortable and can be successful. My son still struggles and we have to take a break during every meeting to walk around the building, but now we know what to look for and we catch him before he becomes overwhelmed. The best thing, the most important thing, is that my son no longer sees his struggles as failures, they are simply struggles. And everyone has those.

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