Thursday, September 30, 2010

We Fight the Fights That are Worth Fighting

Elise, A.K.A. aspergers2mom 

Fifteen years ago, my oldest son was diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified). At the time, we had no idea what kind of future he would have -- if he would have at a future at all. Autism was not even a word on anyone’s lips at the time; no one was talking about it and no one was even acknowledging the epidemic that it was becoming.

Luckily, I had a cousin whose son had been diagnosed years earlier and I called him for some advice. The best thing that he ever said to me and what I pass on to others is: Do not project the future for your child. Take each day, each moment if necessary, and do what needs to be done at that time. Then one day you will look back and see how far your child has come. That is exactly what I did -- and when I look back, I see miracles.

My oldest, whom we call Collegeman, was falling apart by the time he was five. He had regressed to constant stimming: he couldn't sit through a class, barely spoke, and lacked the social understanding of how to behave. But what he could do was read, and write, and create. We had had no idea that he was hyperlexic. In fact every doctor, every speech therapist, every school I took him to at the time had no idea what they were looking at with collegeman and the ones that did dismissed us out of hand. So needless to say when we received that initial diagnosis we were relieved to know what we were up against and what we had to fight. By the time our youngest, Highschoolboy, was diagnosed we were better prepared and knew what we had to do.

Yes, I say fight. Because it is a battle of wills between a disability that would take your child and hide them behind a wall of silence and you the parent who needs to do everything possible to make sure that does not happen. I know many people do not like the notion and resent when people say that autism steals your child. But it does. Yes you could be one of the lucky ones that are extremely high functioning to the point that you get along fine in society but most persons on the autism spectrum are not that lucky.

I see autism not as a part of my children but as this monster that is in their brain, like a parasite, that prevents them from being whom they were meant to be. It takes things that are so easy and makes life so hard. It takes moments that should be joyful, like high school graduations and bar mitzvahs and makes them moments of pain and trauma. It even takes from them even the joy of a movie because the sound system is cranked up too high and they can’t handle the auditory output. No, don’t say this is about me, this is all about them and anyone who doesn’t understand that has never loved a child. As a parent you want your child to enjoy, revel in and live their life. Being a part of milestones and taking joy in accomplishments and basic fun is part of being a whole human being. When your child can’t do that, when your child cries because they can’t wear a favorite shirt because the feel of it causes them pain, you cannot tell me that that is life. This is not life; this is not something you have to accept. In my book anyone who accepts that their child deserves less of a life, has no business being a parent. So this is why I fight.

But what does that fight entail? Oh so many things. The first thing we did for Collegeman when he was 5, was make the house autism-friendly. We took everything that he was obsessed about and put it in the great room. That became our autism room. He had a place where all his special belongings were and they were kept in the manner that he wanted. We also had a couch and a TV so he and his brother could watch their videos and play their video games. The computer was also in that room so he could access his educational games whenever he wanted. What we did not allow him to do is sit alone and not interact with other persons. We forced him to be with us and to participate in life. We took him everywhere with us. He went to the grocery store, the mall and the playground. Yes, we had to watch him closely and yes, we had to find creative ways to get him to enjoy the outings. Whether it was giving him donut holes so he would sit in the cart or letting him play his handheld while we were out and making sure that he understood how to behave in public.

Organizing his world at home also helped. We scheduled his world, just like that did in school. We made sure that he knew when something was going to happen, how it would happen and what his response should be. We left nothing to chance as best as we could. Social stories and schedules are some of the greatest inventions for persons on the autism spectrum. It helps them know what to expect and social stories helps them learn the unwritten rules of social behavior for that specific event. Don’t think that the social story stops as they get older either. Before something different is going to happen we explain what the event will be and how they will behave. We outline for them what the procedures will be and what someone will expect of them at the event. (At this time, however, it doesn’t have to be written down or cartooned. It is all oral instruction.) Over time too they learn what is expected in any given situation. New situations and transitions are always an issue. But with the proper support and care it can be done with minimal discomfort for the person on the spectrum. Planning, all it takes is planning.

Another aspect of their existence is organizing their world and responsibilities. Now you would think that being creatures of habit and rules that organization would be easy. But it is not. To be able to organize your world to include being able to take care of yourself is very different than keeping to a rigid schedule. What your child needs to learn is how to employ the skills known as executive functioning. These skills enable a person, any person, to know what they need at any given time. They need to know when assignments are due in school, what they need to study and what they need to wear (depending on the weather) for that day. They need to know how to get up to an alarm clock. They need to know how to use a bank, pay for lunch, order lunch. They need to know what to do when they are sick and how to handle a doctor’s office. They need to understand where money comes from and how to pay bills. They need to know good old fashioned home economics.

Executive functioning skills are the skills that help us order our lives. They enable us to take care of ourselves. Again, it is not something that comes naturally to our children, but it is something, as with everything, that they can learn. Now, this does not happen overnight. It takes time and you need to start as soon as you know what the problem is. An executive functioning task is as simple as knowing where to hang their coat and what goes in their cubby in their pre-school class. Everything is age appropriate and even developmentally appropriate. Remember that our children do lag behind their peers, it’s why autism is a developmental disability, but it doesn’t mean that they will not get to the place they need to be. It just means they may get there a little later that is all. So when I speak of the things that Collegeman and Highschoolboy need to work on, remember that they are working on these tasks because they are teenagers, they know where to hang their coats, and what to put in their cubbies. OK they don’t always pick up their dirty clothes off the floor, but we are working on that too (honestly I think that has more to do with being teenagers than having an autism spectrum disorder). As you can see the tasks and requirements get more involved as they grow older, just like for everyone else.

Another skill that I found that we need to work on is transitioning. When the boys were little it was transitioning from class to class. Even from activity to activity inside the classroom. But as they grew older the transitions changed. When they were little the schedules and social stories helped a lot with transitions, they learned what to expect and when. Today the transitions that the boys work on happen to be transitioning to different aspects of life. When the boys went from elementary to middle school to high school, we not only created social stories for them, we took them on tours of the new schools, had them meet some teachers and generally helped them acclimate to their new environment. The interesting thing is that our district did that for all the students, we just did made these trips to familiarize them with their new locations more often than their peers.

This is a great step to take no matter what new environment your child is entering. Even if you are taking your child to a new camp or a new church or synagogue you should go with them and help them familiarize themselves with the area. They can practice sitting in the classroom, the bunks or the pews to get an idea of what it will be like. If possible they should meet the people that will guide them. If no one offers transition support, don’t be afraid to ask for it. It is an important part of helping your child get used to a new situation. In fact, Collegeman just started a new class with a professor he did not know. We asked to meet the professor and he was very obliging. It took all of five minutes, but it was enough so that Collegeman was more secure going into an unfamiliar classroom.

The next major and possibly one of the more important aspects of raising a child on the spectrum is to teach them how to advocate for themselves. When they are very little it is as simple as being able to say “no” or asking “why.” As they get older they need to be able to tell the teacher that they don’t understand what is happening in class. When they get out in the world, they need to be able to ask for help whether it’s in a bank, gas station, supermarket, or a restaurant. These are basic things that we do every day but again it is something they need to be taught how to do. Self-advocacy is more than standing up for yourself in life (knowing how to handle bullies), this is a big part of it too, however, self-advocacy is more about knowing when to ask for help and how to ask for help appropriately.

All these skills, organizing your life, executive functioning, transitioning, self-advocacy is a huge part of becoming an independent person capable of living life on your own terms. It is not something that starts when a person reaches 30 years old. It is something that needs to be taught from the moment your child emerges into the world. Parents of neurotypical children don’t even give any of these things a passing thought. Their children just learn these skills by existing or watching others do it. Our children need to be given step by step instructions on how to handle problems and deal effectively with issues that arise in their everyday world. It is an ongoing process but one that can be done successfully.

Collegeman was diagnosed with PDD-NOS at five years old. The doctors told us not to get our hopes up, as far as what his life would be like. I didn’t get my hopes up; instead I fought like crazy so my children would be able to decide what kind of life they would have, just like every other human being has the right to do. Collegeman is a junior in college. Highschoolboy is applying to college this year.

Don’t let anyone ever tell you your child can’t. Our new psychiatrist just told me that Collegeman would have trouble with the social pragmatics of law school. OK, like I didn’t know that, but it doesn’t mean that if that’s what he wants we won’t figure out a way for him to get there and be successful. Besides who hasn’t met a socially clueless attorney? There are ways to accomplish everything. You just need to never give up the fight and figure out the best way to teach your child what they need to know, to have the life that they are entitled to have.