Saturday, September 7, 2013

The Ugly Side of Autism

One might be surprised by the number of times I have been asked " okay, I see that he is unable to speak, but other than that, what makes Autism so bad?" It really is not a dumb question, it is simply an example of how much there is that is still not understood by many about this epidemic.
   Please understand, that as I write this, I am not complaining, but rather explaining what goes on in our particular situation. I am not looking for sympathy, but there may be others who are in need of some compassion, and hopefully when you finish reading this,you will understand what I mean.
   Our son Mikey is generally an easy going child. He loves to laugh and be silly. When he sees his brothers getting into arguments or getting too rough, he removes himself from the situation quickly.
He is never in search of a confrontation. That said, he definitely has his moments of frustration.
   The problem with being non verbal is that it is very difficult to express yourself. Yes, getting a glass of juice or a cookie is easy enough, but when you really need to convey a thought or feeling, it can be excruciatingly difficult.
   Today was a perfect example. I needed to run a few short errands, and I took Mikey and one of his brothers with me. By the time that I was five minutes into the trip, I could tell it was already an epic failure.....why? Well, I cannot give you the true reason, but something had Mikey upset. He began to push his wrist into his head as hard as he possibly could, which quickly progressed into a ferocious head banging episode. He has unfortunately started a habit of hitting himself on his head ,right between his eyes, with his wrist. Hard.
    Realizing that nothing I had planned to do was critical, I went home. Upon entering the house, Mikey dug his nails into my upper arm as hard as he could, and ran into the house. He proceeded to go out the back door,slamming it four times, and let out a scream not to be believed. What had happened? I am not quite sure, but I do know that he was angry. He wanted to let me know how angry he was, and both he and I walked away from the situation hurt. Not a good thing. Below are the pictures of the scrapes on my arm, and the way his wrist looks from banging it into his head.

While he will frequently hit his own head, not very hard, but more as a self-stimulatory behavior, fortunately for us, he does not lash out at others often. Truth be told, it has been a very long time since he has behaved this way. We are not sure what causes the frustration, but have noticed that when seasons change, or we change the clocks, he goes through something.When I tell you that watching and hearing your own child hurt himself is a horrible thing, I mean it. I wouldn't wish it on anyone.
    Many families affected by autism deal with these type of situations daily. I once was told by my sister that a friend of hers confessed that the worst beating she ever endured in her life was from her seven year old adopted child who had autism. This life is by no means an easy one.
   Of course, noone should endure this kind of thing, and if it is a frequent occurrence, it should be addressed with doctors and therapists who will suggest various means of alleviating the problem. However, when it is a rare episode, each family must decide what is best for them.
   I am sharing this so you may take a moment to understand why this disability can be so devastating for families. It is by no means easy. As I mentioned above, I am not complaining, but rather trying to educate those who may not understand why it is so hard to live with.When this happens in our home,after all of the parties have calmed down, we hug and kiss Mikey, and talk to him about what he has done, because we know he understands. We  try to figure out why it has happened. Today, he kissed me, and rubbed my arm, clearly an apology on his part.....I, of course,always forgive with an open heart.This is my child, and I love him unconditionally. It is like being the mother of a toddler who has have to use these moments as teaching moments.Again, no easy task.
   For some children, puberty alone can trigger such emotions and frustrations.Parents have their work cut out for them, and patience is key. We parents of children with autism are tough, tougher than you know. We, like people fighting other medical problems, never give  up, as it is not an option. We persevere, look for solutions and continue loving our kids.
   So while breaking a nail, or trying to help your child decide on what school to attend, or even having petty arguments over trivial things with people are common complaints, understand that these things can all be fixed. If only the same were true of autism.