Saturday, March 13, 2010

Living on the edge: Life as a Parent of an Autistic Child

So yeah, ours is something, to briefly introduce ourselves we will start here. Some of this is from FB, some from a book I have been writing, all of it is real and honest to God a gift for us to learn something.

This is about being the parent of a highly functioning autistic child. Our son is different than most children on the spectrum. Our view point is different as we didn't experience things that parents whose children did go through the general education system did.
Our son is better in some areas, worse in others. Best of all, he looks like your kid. He does, really. He is a bright, intelligent and very lovable little boy. We are fortunate. We aren't saying that there aren't problems or issues or things that really suck. What we are saying is that we are very happy to have a boy that we hope to help him succeed and do well and be independent when the time is right.

I hope you are able to read, understand and comprehend the parental views in this story. Most of the experiences are our own, some we have heard from others and some we agree with and some we don't. This is a view that many don't see, won't see and if they did they would never comprehend what is going on here in our home. Maybe a story like this will give them the idea that our story is different and maybe just a little more compassion and understanding will be imparted in the world.

I believe this introduction to this story says it all.

"I am just a mom, my husband just a dad. Who would have thought that two ordinary Joes like us would have gotten picked? I mean really, who and what are they that they get chosen to have a child on the autism spectrum?

As an infant, I knew our son was special. As a tiny baby he was only happy when he was hugged tightly (known as deep pressure) all the time. As he grew, he still wanted the hugs but would take my face in his hands and try to direct me with his eyes. What we did I called "eye reading" as he rarely spoke, except to yell and his behavior in public was, well difficult? At one point I was the only person that was able to communicate with him. We ended up using our own made up versions of sign language, eye contact, and quasi-verbal communications.

This story is about all of that fun stuff. The "OMG what am I going to do about this kid", or "How to get through evaluations and survive what a thoughtless 22 year old teacher might say to hurt your feelings". AND it is about 2 “ordinary Joe” parents who are giving it their best shot and just trying to make it all work.

I hope you get something out of this. If not, sorry, maybe you didn't have enough for me to put in, or you are just not ready for the reality of hearing about child who is on the autism spectrum. We aren’t writing this to make others happy, just to understand our son and ourselves.

Don't worry, you will understand eventually, and you will get there. Just read the facts a few times and we will work on you from there.

Seriously though, we live, dream, hope and pray just like everyone else."

Maybe you will read this blog, or maybe reject it, either is a story that someone needs to tell. Why not me and my family?

It is us three, and three cats, we live like everyone else does. Maybe a little more quietly, the phones don't ring that often. Friends aren't here much. In fact, we really didn't have places to go or friends to hang out with until a couple of years ago. Our lives are really mundane. No flair, excitement or camera flashes.

What we do have is a lot of school meetings, lots of information about what is going on at school, things about our kid that sometimes we wish we didn't know. Recently, we were informed that a young lady had accused him of harassment. A teacher aide told our son he did it and he concurred, later he told me he assumed that the teachers aide knew something he didn't. We checked his phone records, he never had called the girl in question. He wasn't even sure who she was....the teacher aide is no longer allowed to speak to our son without someone else present. Can you blame us? Is it hard to realize that a child on the autism spectrum will believe a person in authority over what the facts are? This aide is a person that should not be allowed the privilege of working with our kids. Unfortunately, tenure does not protect the good teachers, just the ones that cannot get a classroom anywhere else.

Pervasive culture shows that kids like ours are seen as "Forrest Gump". To us that is NOT a compliment. It is a painful, cruel allegory that diminishes the intelligence of the entire group of kids that are smart, able to do things and be in activities outside of the regular school day. Our son gets good grades, is in sports and is able to function most of the time in a regular classroom.

It goes with out saying that we work hard with him. He is doing his homework, we are the tutors. My husband and I split up the classes, he does the science and math, I do the language arts and history. It is a lot of hard work. We read books that we read when we were in high school, and we have to remember what we thought of them back then and not through the life experiences that we have had. Reviewing high school and explaining it to a 15 year old Asperger's boy is a new experience every day.

After reading Romeo and Juliet, try explaining girls to an Aspie. Talk about foreign creatures; girls are a nice but weird things....and oddly enough the signals these creatures send off are enough to confuse a parent let alone a boy who has trouble socially. The most recent girl thing, the harassment complaint was completely unnerving to our son. He didn't know what to do with it. He was embarrassed that he didn't even know this girl and yet had to explain that he would never call her because he didn't think she was pretty enough.

Living with a boy on the Autism Spectrum is never dull, we are constantly in a state of flux. Our lives are on the go, we aren't just sitting there....we have schedules, meets, practices and homework. There are days when my husband and I feel like we are back in high school, and barely maintaining that.

No matter what other people say, doctors, or lawyers or teachers, until you live it day in and day out you don't know jack about it and it might be a better thing for you to just put up and shut up. I often ask people to come and stay to see what they would do with our son and how they would handle problems. Regularly they turn us down....we knew they would. Living in this autism world is not the simple thing that most think it should be. Until they do, treating it and helping the patient through a day to day existence should not be part of the treatment plan. coming up with generic stupid terms is no way to solve the problem, it makes it worse instead of better for all concerned.

Look at the furor over the latest change by the American Psychiatric Association. Dumb, dumb, dumb. These docs did not use the brains they were given and instead have made it more difficult for services to be determined. Thankfully, there are famous people, like Jenny McCarthy, and Jim Carey who are dealing with a child who had issues,and are bringing our issues out into the open. How lucky can we get? But look at her situation, it sounds like a misdiagnosis and the poor woman had to deal with that pain and then the pain of the public, and if he is cured of the other the joy behind that. Holy cow, how much can one person take?

Sadly, when I get yelled at by my son, daily for weeks, and am told to "Be patient with your child." All I want to do is tell that person to "Stuff it. You come try and then tell me what to do." Most won't come try, as I mentioned before, and their reactions are what you are looking for....what will they say when you come in to a room and decide you need a break. Fine, do whatever, just tell my kid not to yell at me anymore. I can't stand it.
Sometimes things change, then sometimes they don't it just depends on your kid, the day and what happened at school.

Really, it is all a matter of working things out. Working out the idiot teacher's aides, the stupid little girls and the other social factors that we have to deal with. Dealing with other parents, trying to make friends as adults and do what we need to do to just get through a typical day. Our days are like no other and although brief, I believe this story has given you an idea of what we get to do regularly. Lucky us.