Living with Autism

If you are not the parent of an autistic child, then you probably have no idea what goes on in day to day life for an "autistic family". Living with autism is hard for a child, as I have described in previous articles, but what about the parents? Have you every wondered what they go through? Especially if their child is so autistic that they cannot even speak. You cannot just leave a child like that with anyone, it has to be someone trained in that area, especially when you are talking about an adult child who is autistic, and that is not free, or cheap.

So what happens to the parents who cannot afford services to care for their adult child while they get a much needed break? They simply never get one! They are left to care for their child, or in our families case, our adult child, 24/7. Don't get me wrong, I am not complaining about caring for my grown son all the time, but it sure would be nice to be able to go to a movie, or for a hike, or how about Church! Our son has gotten so bad, that we have not been able to go to Church in over 6 months!

Our son not only has autism, but he has a host of other problems, epilepsy, vomiting issues, and erosive esophagus. Not to mention, he has a sleep disorder which prevents him from sleeping, he has in more than one instance, gone for four days without sleep! We have now figured out with the approval of his doctor, that if we give him medication every other night, he does not build up a tolerance to it, but this also means on the off nights he does not sleep making that day rough for him and us. The things that most of us take for granted, (going out to dinner, movie, etc), we have been unable to do for many years, because our son has so many health issues, he is unable to do many things, and we cannot afford the professional care that he requires in order for us to be able to do things. For most people a babysitter is sufficient to get away for an evening, but that is not sufficient for Mark.

So we care for our son, day after day, some days are very hard, and others are not so bad. It's not easy living with autism, especially when the autism is as severe as our son's is. He is 20 years old, but cannot reason beyond a 5 year old, if that! His favorite shows are Thomas The Train, and any of the Pixar movies, and his favorite things to have, are Thomas Train toys, and stuffed animals. Our 20 year old son is a very small, little child, in a mans body, and he has no clue of any of it! He cannot even bathe himself, and he has been this way since he received his MMR vaccine 18 years ago!

What is it like, living with autism? For us it can be a joy, but it is a lot of work. It also can be the biggest heartbreak you'll ever experience, watching your child grow physically, but never mentally. Knowing that they will never talk to you. Knowing that their favorite thing to do, will always be playing with Thomas Train, and watching kiddie shows all their life!

Kids like our son are special, they will always be innocent, but it is so unfair to them, and their families to have to go through this kind of life, and to watch someone you love so much, go through it, and know there is nothing you can do to change it. It's like being locked up in your own mental prison of torment that you cannot even begin to understand!