Recently I showcased some of my latest items in this post about creating for a cause. My cause happens to be AUTISM.
I get a lot of questions about what it is like to have a child with autism and many of them are the same ones over and over. I don’t want to focus on autism all that much on my blog, but since it is a huge part of my life, and one that is not likely to change, I find it important to include some thoughts about it here from time to time. My adorable son, who has autism, will celebrate his 14th birthday next month. Just like any other Mom, I cannot believe how fast he is growing up into a young man.
It has not been easy and at times I thought it would destroy me, but I am happy to report that through perseverance life has settled down for us quite a bit, although it will never be “normal”. How has autism impacted us? It is really rather: How hasn’t autism impacted us, because, make no mistake about it, it is a life changing diagnosis. As is often the case with traumatic events, when you first receive bad news, I remember clearly where I was, when I figured out what was “wrong” with my then 14 month old son. I was reading an article in “Time” about autism. With it came one of those “your kid might be autistic if” checkoff lists. I checked off all the warning signs listed, but one – and then just sat there and balled my eyes out. Still, it took months, if not years to get the doctors to finally admit to it. I didn’t want it to be true, but that doesn’t change the facts and from what I had read timing was crucial.
These early years are a blur of doctors appointments, most of them useless, test after test after test and therapy sessions, lots and lots of them. He needed glasses, because his eyes were so crossed it could make you dizzy just looking at him. He needed feeding therapy so he could learn not to throw up everything that had even the tiniest chunks in it, physical therapy to teach him to walk and other gross motor skills, occupational therapy for the fine motor stuff. All but speech therapy, which is what he needed the most, but was denied insurance coverage for.
You see, autism doesn’t like to exist on its own, most of the time. It has to bring along companions like apraxia and sometimes epilepsy. In our case it was apraxia, meaning that the brain knows what it wants to say, but the muscles don’t know how to translate those signals into words. There were times when he showed great promise and began saying individual words only to loose them again completely. One of those words was, ironically “help”. In those nearly 14 years he has only called me Mama one time, but he said it so clearly while signing it and then pointing right at me, I knew he wanted to let me know that he could. Oh, how I would long to hear that again, but for right now I have to be alright with the fact that he said it at all.
Why have I chosen to tell you about this? It’s quite simple for me. There was a time when I would have considered something like making and selling my own jewelry a frivolous waste of time. And I am here to tell you that it is not.
I believe the worst part of the early years of his diagnosis with autism was my incessant drive to try to fix him, to move from one therapy to the next treatment and so on, only to be disappointed again and again. He dosen’t need to be fixed, because he is not broken. That is not to say that he did not benefit. He has made tremendous strides. It is just that his benchmarks are considerably different from those of a typical child. It took him 27 months to walk, but he hasn’t stopped since. When we changed him over to first, a gluten and casein, then egg and additive free diet, he began eating a much greater variety of food than ever before. I now call him the bottomless pit. Seems there is never enough on his plate these days to satisfy his enormous appetite. He looks healthy and he is happy. He is a prankster who loves sliding his ice cold hands under my shirt and onto my back.
He is always scattering dirt somewhere, propping up sofas with whatever objects he can get his hands on and he loves the sight of opening and closing garage doors more than anyone in the known universe. He does not suffer from autism. We do. Why? I know that the day will come when we are no longer around to give him the care he needs and deserves. And while we know that we will do everything in our power to make sure he is well cared for, there are no guaranties and the statistics work against us in a big way.
I know that without having jewelry as my creative outlet, I would not be the mother I am now. If you are an autism Mom, just starting out on your journey, know that it is not only okay, but it is vital that you do not loose yourself and your identity to autism. It already has your child – don’t let it take you, too! You owe it to your child to not be consumed. Your child deserves a mother who gives herself permission to pursue her own happiness as well as his/hers.
Are you the mother of a child with autism, Down Syndrome, seizure disorder or other challenges? Do you create art? Have you thought about starting your own creative business, but felt too guilty to pursue your dream?
I hope you don’t mind me sharing my thoughts about this and other subjects like it, from time to time, as they do influence my life on a daily basis and make me who I am, as a person and an artist. I would really like to hear your thoughts!