Autism and what it is in my home

I recently watched the movie Rainman with Tom Cruise and Dustin Hoffman. I believe this was the first of its kind to show autism on this platform. It showed just how many people even those in the medical field were not aware of it and how much we didn’t know. As I watched it I say so many similarities in Dustin Hoffman’s character, who had autism. Even though it is now a household name in this day in age it is still in what I believe in its infancy as far as treatment, causes, etc. There are so many things as a parent I don’t understand and not sure if I will ever. I have ready articles that tell parents to do this or that but the truth is that not everything is the same so the overall treatment for autistic children may not be effective for everyone. You have to learn what works for your child/adult.

In one scene of the movie Raymond (Dustin Hoffman) is in the kitchen of his brother’s apartment (played by Tom Cruise). Raymond is trying to cook some waffles in the toaster oven. He cuts on the toaster oven and walks away from it to get out syrup and a juice box. Smokes starts billowing out of the toaster and eventually sets off the smoke alarm. This is when he starts to freak out by covering his ears and starts hitting his head against the glass of the door. He didn’t stop doing this until Tom Cruise uses the broom and knocks down the smoke alarm to get it to stop. My son used to bang his head a lot when he was younger. Even to the point that his doctors were at the point of making him wear a helmet. He would bang his head on brick walls, concrete and other hard surfaces. I often wondered why he did this. There was a certain sensation he would get when he banged his head that we assumed felt good. When he gets frustrated he will sometimes use his hand to bang his head but thankfully doesn’t go to the point of even harder surfaces anymore. How or even why he has overcome this I am not sure. It did complicate this more considering he had seizures and could have caused further damage.
Raymond was really good at certain things mathematical. He could count how many toothpicks fell out of the box and hit the floor but didn’t understand the value of a dollar. This is half-true for Dusty. He doesn’t understand money at all. We had gone to Golden Corral the day Kayla moved into her dorm room at college. Dusty gave someone a tip for making him an omelet. The only thing I think kept him from pulling out something other than a one dollar bill was the dollar bills other people had given the cook. He saw the bowl the tips were in and noticed all the had the 1 on it. We were at the table when he went to get the food. This is one of very few places we can somewhat trust he will be ok and not walk off. He came back and told us he gave them some money for making it. We assumed at first he may have thought he charged him for making it versus it being a tip. We weren’t sure just how much he gave the cool. Luckily there was a gentleman still there waiting on his omelet and saw what Dusty gave them as a tip.
Back to the toaster oven scene. So as my husband and I were watching it we both spoke about this thing very much happening in our home. He just doesn’t have the quick response needed in this situation. I mean there are times when he spills something that he seems to freeze up and not react to the situation. This is a reality in our home day in and day out. Even cooking in the microwave for him isn’t a sure thing. We have gone through several microwaves because of things he did or didn’t do while using them. Even once putting a bowl of ramen noodles in the bowl and turning it on without water in the bowl.
Some people think, oh my son isn’t that way and come to find out differently. My husband even brought up safety concerns for just taking a nap while he is awake. He even mentioned having to ”lockdown” the house to make sure he doesn’t get out if one of us was home and fell asleep. There are safety concerns for both sides of this.
People often think that parent(s) are using their children as an excuse by not having a ”job”. This is where they just do not understand what autism is in their home. It is something that people think they understand and then witness it for themselves and immediately has a change of heart.
That is one reason why we filed for guardianship.
Each form of autism has it challenges not making them better or worse than others, just different. There are severe to mild cases of autism that make it even harder to understand how they can both be diagnosed with the same thing. I may never know what truly causes autism so treated it seems to us more trial and error based on what works for us. Just like children that are ”normal” there are forms of discipline that work and some that don’t. We can’t focus on one or two ways of treatment because there are more than one or two forms of autism. Effective treatments can be so complex that it takes years to get the combination right. Then you may never truly get something that is totally effective.
For my son, each year, each illness, milestone has brought on its on challenges. They have all meant I had to re-think what is effective. There are some things that he continues to do, for example picking. He picks at his skin constantly. He has picked holes into his arms, face, legs, back, shoulders, anywhere he can reach. I have never been able to get him to completely stop. It is something I am not sure if he will ever quit.

Just like other diseases, disorders, illnesses we may not fully understand what causes them but try different things to treat each one. Like antibiotics they will not work on everything. It all depends on form it is. We may use one treatment for a while and change-up to see if something else is more effective. It is a continuous battle with no end in sight. You just have to focus on here and now and what works for your family. I know he will most likely never live on his own, but I still hope for the best. I mean we never thought he would have made it this far. Just thankful for the life we were given and its impact on our family as a whole. Look at the bright side of the spectrum and don’t always focus on the bad. Look for that ray of sunshine on a cloudy day and thank God you are able to see it.
As always many blessings and thank you for letting me share our lives with you.



Knowing the location of the person who needs help!

Originally posted 2014-09-05 15:12:24.

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