What you see below was written by Cindy Peters of Cary, NC as a post on Facebook. Even though I stopped writing for the blog I felt it was important to share and my blog site gives me a place to post it outside of traditional social media. Please take the time to read it and digest everything she has to say. It is very much the same life we experience with Dayna…….
April is Autism Awareness month:
Many people think of autism as the kid who is just a little “quirky” or that “nerd” who is smarter than anyone else in his class. (And I say “his” because the truth is, many, many more boys than girls are affected by autism.) Others think of movies like “Rainman” or the television series about a doctor with autism. Or the story that circulated around the internet many years ago about the boy who was the equipment manager for his school’s basketball team who came out to make the winning shot in a game that the team really didn’t need to win to make the playoffs.
But I want to talk to you about another side of autism, one that is rarely mentioned.
You see, I have a 25 yo son who was diagnosed with autism at 27 months. Sometimes, when people find out about my son during a conversation, they will ask me what “gifts” he has. And I will tell them he has a smile that can light up the world. And then they will press, “No, really, what is his special gift?” And I have to tell them that my son is not a musical prodigy, nor a “whiz kid”, nor will he ever lead an independent life for that matter.
Kenny, like many others with autism that you never hear about, can’t communicate more than his most basic needs. And at that, you have to know what he’s trying to say because of his oral motor issues. He can’t write his name because of fine motor deficits. And though we’ve been trying to teach him for years, he still doesn’t know his colors. (He does know his shapes, most of the time.) He learns by rote memorization instead of understanding concepts. So if a question could have multiple answers, he is stumped.
He suffers from several comorbid conditions, including gastrointestinal issues, grand mal seizures, and severe OCD. His ADHD gets in the way of many tasks he should be able to complete. He has to be on a special diet to keep this even partially under control. Because he is highly allergic to corn, most of his medicines have to be compounded, since cornstarch is a filler in so many pills. Even his ibuprofen!
He’s had problems with sleep at night which can go on for months at a time (and I have the dark circles and bags under my eyes to prove it) before having one full night of sleep. Most nights he strips the bedding off his bed and puts it on the floor – and most mornings I am washing his comforter, sheet and mattress pad because he found his bedding a more convenient place to have his diarrhea than the bathroom. Why he does this, I do not know. During the day he knows to go to the bathroom when necessary.
As he got into his teen years, his sweet disposition turned to frequent rages, during which property would be damaged, or the closest person attacked. Sometimes I would not know what set him off. Other times, it was as simple as somebody having coughed or sneezed. At the worst, this happened 8 – 10 times a day, and could last half an hour or more. It was during that time that my shoulder was broken and my rotator cuff torn when he pulled me off the stairs outside the house. Fortunately, his rages are less frequent now due to new treatments available. It took the help of other parents in the community who steered me in the right direction. Thank heavens for the circles of support on the internet!
While this may sound bleak to you, trust me, there are families with children whose behaviors are much worse, and are struggling even more than I have.
At some point in time, it became “politically correct” not to mention these struggles to others, but rather to “celebrate” each individual. Parents are supposed to find the positive aspects of autism, and talk about that only. Sure, I’ve had positive experiences with my son in the last 25 years. But as much as I’d like to say it has been a good experience, it has not. I have learned a LOT about myself and others during this time. And I would not hesitate to say that this has made me a better person, and taught me what is really important in life. But if I could do one thing which would “undo” his autism, I’d do it in a heartbeat! Living with autism can cause extreme stress among the parents, and yes, the siblings of children with autism. To deny this is to deny reality.
There is a tsunami coming as these kids age out of school. The services available for adults with autism are minimal, and it is hard to find people who want to work with them. My son is eligible for 84 hours of services per week, yet for almost a year, I had to work 75 of them myself because nobody wanted to deal with his behaviors. When a five year old with autism has a meltdown, it can usually be handled by virtue of the fact that the caregiver is bigger and stronger. But that’s not the case with full grown adults. They can do some serious damage! Who wants to put themselves in that line of fire for $9 – 12/hour?
We, as a nation, need to realize that autism can be a very serious condition. We need more funding for services, better pay for those that work in the field, and better training so that workers know how to deal with challenging behaviors and how to avoid them. And finally, we need to be planning ahead for what is going to happen when the parents are no longer able to be the caregivers! We have Centers for people with Alzheimer’s and Dementia, will we have comparable facilities for adults with severe autism like my son and so many others?