As a mom, this is not a path that I would have chosen. Not only because it is a difficult path as a parent, but I imagine it to be twice as difficult for my little boy.
Although he has a primary condition defined as Cerebellar Hypoplasia, which basically means his cerebellum is malformed, his secondary condition has been placed as Autism Spectrum Disorder.
I don’t want to victimize myself or my child with this post, nor do I want to cause pity. My motivation for speaking out about my personal experience dealing with an autistic child, is awareness for the sake of everyone that will come in contact with an autistic person, or the family member of someone with autism during their lifetime.
It can be a lonely road. You want to do everything you can to remain normal, and provide your child with regular activities that expose him to the everyday life experience. Sometimes however, you slowly isolate yourself, not out of shame or fear, but out of love for your little one. My boy is sensitive to excessive noise; the murmuring of a large crowd, a pastor preaching through a microphone, quartet music, and the list goes on. Although I want him to participate in many things, I realize that he is bothered by them. A simple day at the zoo can prove to be very disturbing, and a birthday party can frustrate him to the point where he will bang his head.
Little by little you shy away from being actively enrolled in things that can potentially bother him. Other times, you come to the conclusion that it may be unfair for other people as well to expose them to a child that is yelling, or drooling, or clapping out of control on the table next to them while they are trying to enjoy a quiet breakfast with their family. Everyone’s got problems, everyone has the right to relax and deserves to enjoy life without having to deal with someone else’s «problem» child. My son is part of me, but I also think about the people around him and how the rejection the world still has for people like him can possibly hurt him.Therapy and growing up has helped him develop tolerance to many things. Still, there is a lot of work to be done.
Jumping to Conclusions
People look at it from an outside perspective and lightly suggest things that really are of no use to you and your situation. They don’t do it out of harm, we all know that, they do it out of innocent ignorance. Now, I am not calling all these people ignorant as a whole. I am just saying that their lack of awareness when it comes to autism leads them to draw erroneous conclusions and cast unfair and hurtful judgement on parents and children alike.
For example, I had a friend that dared say to me that kids who did not speak were because the moms were not working hard enough at practicing with them. My son is non-verbal, many autistic children are; but people don’t know enough about the large spectrum this condition covers. They don’t realize that some autistic children are very high functioning, while others barely function at all. What applies to one, does not apply necessarily to another.
Even as parents we don’t know everything about our kids. No matter how well we know them from observation, interaction, or pure instinct, a child that is unable to communicate leaves a lot of blank spots. At times people will ask me questions about my son, and they look very confused when I don’t have a clear answer. I am the mom, and while I may recognize gestures and faces and patterns, I do a lot of guesswork, and don’t have answers for a lot of things. Yes, it is frustrating at times, but it simply comes with the territory and we learn to play it by ear.
There are so many things that make autism difficult to understand. It is so broad, and confusing at times. The main thing I would like to for people to take from this blog entry, is that you are not expected to understand autism, or an autistic person, or the relative of an autistic individual. Understanding might not be possible in many cases, but awareness is possible. Be aware there are parents dealing with this situation at home, be aware there are autistic adults feeling lonely and confused because they don’t even understand what is happening to them, be aware that there is no cure, just treatment, be aware that others struggle so much more than you to have a chance at something «normal».
When you are aware of the complexity of an issue you develop tolerance, and you realize that you are not the only one who doesn’t understand, and that is okay.
As a mom, I would have never chosen this for my child; that’s why I’m glad it chose me.
Are you aware?
Daylin Horruitiner
Poetas & Locos 