Saturday, May 21, 2016

One Problem of Being A Spectrum

It has been over 4 years since autism has been a huge part of my life. Within that four years I have learned more than I could ever begin to express in words on this blog. There are lots of topics that I like to discuss and talk about. I fail to mention a lot of topics on this blog because  I just simply don't have the time or just don't pick that topic to discuss. One topic I don't discuss very often is how much I hate the fact that autism is a spectrum.
I'm not going to get into all the details of why I hate it but I will pass along an idea of why I hate the fact that it is a spectrum......

I am a mother to a child who falls into the severe category of autism and one that falls in to the mild end. There are more people with autism who are in the mild to moderate end of the spectrum than they are in the severe end of the spectrum. Nonetheless, the mild end of the spectrum is what seems to be discussed more  and in the news more. Don't get me wrong, mild autism has its many challenges. I know first hand and so does Andrew.

I am elated for the people with mild autism who can go on to graduate college, be a beauty queen, actor, public speaker, and the many other roles that these people have done. Yes it is very encouraging to me as a mother of a child with mild autism. It gives me hope that through our hard work, Andrew can achieve goals just like that! And I need hope!

On the other hand, it is hard to swallow for Trenton's sake. For example, I was at a seminar the other day and a mother of a child with autism told her story how her son's autistic challenges were improved through the GFCF diet and supplements. She also went on to explain that each year things just got better and better.
Another mom of a high functioning kiddo told the crowd to "stay away from all the depressing stories on autism because it is too depressing and her  life with her boys got better each year."

HA...a mother of a child with severe autism can't "stay away" from the "depressing parts" of her child's autism.

Well, it is hearing situations like that and stories like that, that is just simply hard to handle for this mother and many other mothers. First of all, if you have a child who is affected by autism severely, it MAY NOT get better. I've been doing it for almost 6 years now and it hasn't got better yet. I spoke to a mother of a 19 year old the other day who is much like Trenton and she said she is still waiting for it to get better. In some cases, it doesn't get better. In fact, it can get worse. When puberty hits some kids with autism develop epilepsy and/or PANDAS. Sadly, there are other things that hit too when they get older. Maybe your child doesn't develop other problems, maybe they just don't make much progress.

One way or the other, sometimes it is better to look at the reality of things when you have a child with severe autism than to hold on to hope from the very few success stories of high functioning families.

If I can give any small amount of advice to families of newly diagnosed  kiddos it is this.....Hang on to hope but also accept the reality of how things may turn out in life. Do your research to know the likelihood of what your child's life will be. Please know that you are on a very unique journey in life and you can't compare your life to anyone else. You are really battling your own unique disability.

2 comments:

  1. You are right every time I watch the news it's always usually about the milder side of autism This would help give the parents hope who have children with autism.I love the small advice its truthfully the best statement that I have heard or read.

    ReplyDelete
  2. You are right every time I watch the news it's always usually about the milder side of autism This would help give the parents hope who have children with autism.I love the small advice its truthfully the best statement that I have heard or read.

    ReplyDelete