Write? Why?

I have been badly neglecting this blog lately so I thought I would post a “refresher” for those who may be new here and to my Facebook page.

Why do I write?

I never really intended to write a blog. My blogging began one day when I was writing an extremely long response to a blog post that I had just finished reading. After I hit “post” I decided that writing a response to this post on someone else’s blog was not going to make me feel better about the topic being discussed. I opened an account, copied and pasted that very long comment, on to a page and started my blog.

I was so worried that I would never have enough to say to sustain a blog, but I went for it anyway. It turns out that I did have a lot to say. I don’t know how many people care to hear what I have to say, but I say it anyway.

“I tell stories, most of the time; single individual stories about this or that. Some may be written with humor and some may come across as “Oh, look at the cute thing DC did or said” (he does crack me up at times) but my object is always to make people understand how his mind works.”

It is difficult to explain “his” autism to anyone without resorting to 1000 examples and 1000 stories. So I tell 1000 stories to make clear that there are other sides to autism than the characters seen in TV or movies.

I read many blogs as well. Many of the blogs that I do come across are written by parents of younger children. Most are wonderful and very informative. There are many that I absolutely love, but I always feel that the parents of adult children do not have an equal voice in this community. We are cast aside, or worse, berated. I am not in any way saying my blog is the voice of parents with adult children, but I am ONE voice and ONE opinion in a sea of blogs and opinions that do not seem to make room for the parents that have been at it  for many years now.

I was very tired of being preached at and constantly being told how to feel by those who have not reached this point in their child’s life. I understand where they are coming from and in turn I believe they can or should try to understand where I am coming from. Whatever else you might have to say about me, I  have done a good job of raising DC.  Of course there was help along the way but as a single mother going on 26 years now, most of it fell to me alone.  I truly resent the fact that we, as parents are being made to feel as if after all these years,  we’ve got it all wrong. I know that there are instances where we did have it wrong. When DC was young, there was not any where near the information and services that are available today. (See: Autism In the Old Days

I hope that a little insight into what comes after “school age” may go a long way in getting people to stop and think before making blanket decisions, accusations and statements that may not affect their child the same way it will affect mine. There has got to be some give and take. Everything does not work for every one.

Having said that, I have learned quite a bit from other parents by virtue of my blog. I don’t always agree with every opinion and my readers, I’m sure, do not always agree with me, but I truly believe writing this blog and getting some of the feedback has helped me see some issues a bit differently or at least why some parents see things the way they do. I can only hope I can and will be afforded the same courtesy; and so far I have.

Life tends to be very different when your child “ages out” of the school system and at other times, it is exactly the same. When you are waist deep in school, therapies, programs and IEPs, what happens after 21 is not high on your priority list. Of course it is a priority and of course it is in the back of your mind but, the here and now takes precedence. There are so many new and different issues to consider, and it all comes to hit you in the face much faster than you expect. Your views and opinions can change dramatically from what you hoped for when they were young and what you hope for now. Your life changes drastically, while not changing at all.

In an earlier blog I wrote:

“If I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?”

He will, someday have to live in the real world without me, which will probably mean a group home, because he is going to out life all of the adults I have in place to take care of him when I am gone. We need better programs, more funding for those programs and we need to have trained people working with our children in those programs. The news reports of the abuse and neglect of adults and children with autism by the people who are paid and supposed to be supporting our kids will keep you awake all night, every night.

So I will keep writing with the hope that a few people might read and think a little bit about the future. I would never say that spreading awareness is not a good idea, it IS definitely necessary, but…..

all of the awareness in the world is not going to keep DC safe and happy when I am no longer here to protect him…..

**********