For clarification I found this post in my drafts, it has been here for a while, it is not in response to yesterday although yesterday did prompt me to go finish it. If you don’t know what I mean by yesterday, I am sorry I don’t plan to cite the heated discussion that occurred yesterday.
A journey with autism reminds me of a long bike ride over different terrain. Sometimes there are long roads to travel. Some days there are big hills or even steep mountains to climb. Other days you can coast downhill with the wind in your hair. There is always beautiful scenery but sometimes you are so focused on pedaling you don’t even notice it.
My son has been doing really well this year in general but we still have areas to work on. Having climbed some really big mountains in the past I realize that I am currently tackling mostly hills in comparison. But some days like a couple of weeks ago we still face some pretty steep climbs.
It wasn’t that long ago that I would receive a call from the school almost daily. It wasn’t that long ago that he was refusing to do all work at school and having some serious meltdowns at home and at school. My son once flipped over a desk and inadvertently hit a teacher. He has had times where he was suspended, went back and was suspended again for fighting. Although he didn’t have speech delays he has always had difficulty communicating, especially when he is in a stressful situation.
He used to have bathroom issues well past when he shouldn’t and honestly he isn’t perfect in that area now. I choose not to go into details because a) I have never been one to discuss bathroom stuff- really don’t want to hear your poop jokes b) I feel it is really personal (similar to a I guess). And remember my son wasn’t diagnosed with Autism or Asperger’s until less than a year ago. I was going through all of this without benefit of a diagnosis. I would tell the psychologist or family about his bathroom issues and they thought he was either sexually assaulted or was making a statement. I was pretty sure he wasn’t sexually abused but it actually would have been a relief to have known back then that it was just autism. So I personally am thankful for everyone who does share those details. Because otherwise I still wouldn’t know that it was to be expected.
On my blog I try to be upbeat for the most part but when we are having a bad day I do discuss that. I can appreciate if someone is climbing a steep mountain that doesn’t seem to end they may look at my hill and say “What are you complaining about? I would take that hill in stride and never say a word!” But for us it is climb compared to some wonderful coasting we just did or maybe we had been enjoying the scenery. Maybe I (or my son) just need cheered on to reach the top of the hill that day.
I have sometimes read some pretty negative comments about autism. I have actually seen “Autism sucks”. I have also seen people complain about positive stories about autism and Asperger’s and how these stories paint the wrong picture of autism. Sometimes these statements bother me but I try to put it in to perspective. Maybe that parent just dealt with a crapisode while trying to figure out how to pay for the therapy bills, while trying to understand what their non-verbal child needs. Maybe they came on to twitter or facebook just long enough to make the comment because they need someone to say “It is going to be okay, I am here for you!” Maybe another parent in a similar situation will read that and think “I am not alone” when facing the mountain that they need to now climb.
However I also understand how these comments of “Autism sucks” are very hurtful. I am trying to teach my son to embrace his autism. The other day he was playing PS3 with his friends, someone was being loud and my son said the following: “Please keep it down, I have sensitive hearing… No really I have sensitive hearing…Damn you Autism! … or Asperger’s” He said it in a laughing mocking tone. I laughed out loud and almost dropped what I had been carrying. I shared on my wall immediately because it was funny. But then I also thought, he is starting to accept his diagnosis. That is the only way that he can be successful in life is to understand his diagnosis and limitations. To advocate for himself when needed with his friends, teachers, and future co-workers. When I posted it on my wall I received a couple of comments about how their child would just have a meltdown and they wished they could verbalize. I commented back that my son used to just melt down and that I had an additional reason to be pleased with his statements. Because really it wasn’t that long ago that he would have just had the melt down without verbalizing what was wrong. I originally shared this part of the journey because it was a great “enjoy the scenery” moment.
Through discussions it became a look at how far we have come moment! Whether or not this gives another parent hope may depend on where they are in their journey. It may also depend on what type of journey they are on. Some roads have more hills and mountains than other roads. All I can do is cheer on someone who has more mountains than I do.
On facebook I have seen my share of discussions regarding how the positive depiction of autism is misrepresenting autism and possibly confusing people. I have even seen a comment about how no one will donate to charities if they read all of this positive stuff about autism. If non-cyclists only see the small hills they may say “why do you need that fancy, expensive bike (therapy)?” Or a family member may say, they are only small hills, you don’t need my help or I don’t understand why your child isn’t better behaved like that kid I saw on TV. I think there needs to be a balance to help everyone understand the mountains and the scenery.
My own husband looked at Temple Grandin on TV and said “She has autism?” I said yes, she worked very hard to get where she is. If you read her books, that is the message she gives to parents. However I think sharing the story of how far people, including my son, has come sends the message that therapies do work. Hopefully legislatures and insurance companies receive this message that improvement is possible. How much improvement depends on a lot of variables. Not everyone is Temple!
If you spoke to my son’s preschool teacher she would tell you that she thought he was mute. She would say that he would never participate in circle time and he was always off on his own. My co-workers could never understand how I could be having discipline problems in preschool- me neither!! His first grade teacher would tell you that he just didn’t fit in and wasn’t able to participate in class. His original fifth grade teacher would tell you that he shouldn’t be around other children because he was so unpredictable. His fifth grade teacher would also tell you he destroyed books and refused to do his work. His 9th grade teacher named him student of the month. His other 9th grade teacher would tell you he has made great progress this year but has a long way to go to becoming a man.
We did not get here over night and we will not reach the end of our journey overnight. What is the end anyways? I have no clue. I have no idea what the future holds and what mountains or hills we will have to go over. For all I know we will have to build a boat to cross a river somewhere on the journey or face a mountain we just can’t climb. Please just cheer me on when I need it and celebrate with me when I am commenting on the beautiful scenery. I will do the same for you.