Friday, April 6, 2012

U is for Dispelling Unreality

I remember when I first started blogging and reading support forums, people did not want to hear the truth that autism is lifelong. The interesting part was that the moderators were the ones pushing what I call the "unreality" view. Oh I am not talking about "cures" or "vaccines" or any other broohaha, but that some parents are of the belief that after a few years of therapy there is nothing more you have to do for your child when it comes to autism. They believe that their child will "recover" and that the autism will then disappear.

There are all these charlatans out there who tell parents..follow our program and your child won't need a para, meds or continued therapy. Give them our supplements, our diet and our rather medically dangerous therapies and your child will no longer be autistic. Personally, I believe there is a special place in hell for people like these. Now I am not saying that diet does not help some. I am not saying that vitamin supplements are not good. I am not saying a healthy diet is not good. I am not saying exercise is not good. I am not saying traditional therapies are not good. What I am saying is that anyone who tells you that they can make your child's autism go bye-bye, you need to run the other way but first you should report these bastards to some state and federal agencies.

Honestly, people were truly taken aback when I told them on these forums that my boys were teenagers and still receiving therapy and support in school. One mother with a 5-year-old actually told me that by the time her daughter was in middle school she planned to be done with this autism crap. Meanwhile from what I garnered her daughter was diagnosed as PDD-NOS, not aspergers, and was very very very needy. I warned her that she had better be prepared for reality. Oh she did not like that at all and after that anytime I answered one of her questions she flat out ignored what I wrote and sometimes the moderators even deleted my advice.

I remember when one women complained that her son was having a major panic attack when they changed the daily schedule to go get icecream and he stood in the driveway crying because he couldn't make up his mind what he wanted to do. This bitch complained all she did was want to go get icecream and now her day was ruined. She had no care at that moment about the amount of pain her child was in because he could not decide what to do and could not move forward. She was fu**ng pissed that she could not go get icecream when she wanted to because of her child's issues.

Well I did let her have it and the moderators deleted my comment. Icecream-mom of course took offense to what I wrote telling me that I was a ...well...you-know-what. I then told her off really good again. The moderators actually wrote me an email telling me that sometimes all mothers need is a "hug." I told them that what incecream-mom needed was a virtual smackdown. I also told them that I would not be returning to their little forum. I think they liked that as I challenged their notion of unreality. I think the persons I can't stand the most in this world are the woe-is-me-parents.

I understand that parents want therapies and doctors and special ed to go away. Which one of us do not? I understand that you want your child to have a "typical" childhood. But what you want isn't what is important. What is important is that you face reality and understand that autism is not cured, not recoverable, and does not go away.

Now what do I mean not recoverable. I actually used to use that word alot when it came to the boys. But I don't anymore. They are not recovered as from a disease. Their brains are still autistic brains. They will always be different. They will always have their little quirks, their little idiosyncrasies. They will always be who they are. The only thing that has changed is their ability to understand the world around them and to help themselves function in that world. But they are not "recovered." They are they.

Now reality versus unreality does not mean that they do not progress. This does not mean that the children do not learn to handle their sensory, auditory and processing issues. This does not mean that they do not learn the appropriate social convention. This does not mean that they cannot go on to college, post secondary education and even live an independent life. It just means that they may come to the "adult" portion of their lives a little later than their neurotypical peers. Honestly, so what?

Listen all this means is that at every step of the way your child may need a bit of a helping hand. Yes some may need more than others. It all depends on how they respond to therapy, meds and how much they garner from their support.

It was put to me most recently by a psychologist who specializes in autism spectrum disorders....at every step of development there are new and important lessons for our children to learn. They cannot always learn these on their own. They may need help no matter how old they are. Its one of the reasons we put CM1 back into speech and behavioral therapy. He needed to learn the pragmatics of adult speech and behavior  in order to handle the adult world beyond a college campus. Listen at times they may need therapy to get them to the next level. You know sometimes it just is what it is.

Anyone who has been a full time reader of this blog understands that we have hired a para to help the boys through college. There was too much for them to deal with even if they lived at home. No matter how brilliant your child happens to be it doesn't mean they will "get" the nuances and the subtitles associated with the teenage and college years. Listen the average neurotypical kid needs help through this period, they wont admit it but they do. So what makes parents of autistic children think they can just wave good bye to their child at 18 and say "See yah kid...?"

But I will tell you that I have seen growth in both boys over the years since they began school. I know that they will continue to keep growing as long as we keep supporting them both figuratively and literally. It will happen that they  move on into careers and into the larger social and work-a-day world one day. But it will be on their timetable not mine and not society's.

Now what that will look like for them I do not know. I honestly have never known what any of their stages would look like. I know what I wanted to happen and then I dealt with reality. I know that CM1 did not want a para in college, but it turned out he needed one badly. I know that I did not even give CM2 a choice in the matter. Not because I refused to see that he was capable, but I knew enough that he needed the help and transition support. It turned out he needed it even more than we thought.

I know that I wanted CM1 to join clubs and try to make friends. It did not work out for him. The clubs he wanted to join were not productive or they did not really speak to who he is. So be it. But to day CM2 is going to another gamers tournament. He found a bit of a nitch. Same college, different interests, different outlooks.

We are trying to find CM1 a job for the summer. He likes to work and be a part of that aspect of society. But CM2 gets to take a summer course. He is not ready to work. He would not garner anything from it and honestly I think it would create more issues for his self-esteem. Eventually he too will get there.

It is important to remember that each person progresses in his own time. Each person progresses at their own pace. We recognize that they need what they need when they need it. We cannot rush their progress. It is not up to us. Our children's autism is not about us it is always about them.

So to those who are looking for a panacea, a trick or a magic pill, I am sorry if I did not write what you wanted to read. None of these exist. There may be therapies and diets and meds that make things easier for your child to cope and to process their therapies and support but these are not cure-alls. There is no such thing.

I learned along time ago that the boys' brains are wired the way they are wired. They were born with autistic brains and the goal is to teach them how to access that parts of their brain that gives them strength while teaching them to cope with that part of their brain that causes them issues. By the way, do you really think that autistics are the only ones with issues? Do you really think that autistics are the only ones who have to figure out how the world works? We all have issues and we all have to learn to function in society. Its just finding the best and most productive way to accomplish these tasks that becomes the goal for everyone.

That is the secret noone ever tells you. The great secret of society is that we are all searching for answers to our issues and our questions. It's just that the reality of our children's  existence is so much more in society's face. In many ways that is a very good thing. At least when we see the issues we can deal with them..too many times people suffer alone and in silence. It is the silence of aloneness that is life's true tragedy. Having to help your child deal with autism through adolescence and beyond is reality. Most of us simply call it parenting.


Until next time,



Elise