Having a child with a disability is different from what I expected. During the diagnosis process, there was much said about what Our Kiddo’s language delay could be from. There were power struggles. There were accusations. I always felt once we had a name for his problems, our families would run to help or give the outward appearance of support, or at least respect. What I didn’t expect was what we got. I became a very different person.
True autism, not the autistic-like behaviors which occur with real neglect, cannot be caused. Talking too much or too little to a child will not cause autism. We did not know then, as most young parents do not know, nothing we were doing was causing Our Kiddo’s language delay. We were very unsure of our own parenting skills–perhaps some of what was being suggested could help Kiddo. We tried to implement some of these “suggestions”, such as not giving him anything until he asked. It did not work and frustrated both Kiddo and us as well. Nothing a normal, concerned parent can do will cause autism–you cannot set out to create a child with autism. Cold, unfeeling, frigid mothers do not cause autism. We know many things do not cause autism. We just do not really know what DOES.
The person I was before Our Kiddo and before my marriage doesn’t exist. I like to think I am a better person but some days, I am not so sure. I was quiet and shy and liked to assess a situation before opening my mouth. Despite the fact I have been a performer for almost all my life, my everyday behavior was not flamboyant and at times, mousey. I was a “Pollyanna” and always tried to see the good in a situation and the good in a person before passing judgment. I took folks at face value and didn’t spend my time worrying about what they were doing when I wasn’t around. I always assumed people thought the best of me because I was a good person, honest, helpful, intelligent and loving.
The knowledge someone could think I was a terrible mother has never left me. I know I am a good mother but being told over and over something I did caused my son’s problems left me always questioning myself. I have worked to build my self-esteem but sometimes, I lapse and worry I am not doing enough or not doing the right things.
I didn’t expect to justify every choice. Or to be expected to tolerate people calling each other “retards” in my home, in front of me, in front of Kiddo. It amazed me when a fringe relative called us “cursed” one Christmas, being told ‘cursed” is not what they meant by their mother-in-law and, in addition, I was imagining their forcefulness. It is as if having a child with a disability automatically cancels your subscription to polite society and folks think they can say whatever comes to their minds. I’ve had relatives ask things like–does he have a lower hairline because he’s “retarded” (my side) to asking if we have had his hearing tested (Hubby’s side).
I am a different person. I can only put up with so much nonsense and then I blow, sometimes quicker than I should. I am not shy when it comes to Kiddo’s rights, especially at family events. I use my performer’s voice, posture and flamboyance to explain autism–and my son–to the world. As far as being “Pollyanna”, I take joy in the small achievements Kiddo makes every day but I am realistic. I take strangers at face value but never family–I have learned the hard way, through 30 plus years–it is those relatives who don’t seem interested who can throw me for a loop with their ignorant comments. It is mind blowing being called a terrible mother–or other crass comments– still be married to Hubby and handle the challenges of living with a child with autism. Sometimes, I don’t know how I do it.
It is so important to support parents of young children–in a positive way–when autism or any disability is suspected. Young parents are unsure enough without having everything about their parenting and character called in to question. Grandparents and other extended family members must try to step back and assume the young parents are doing everything right, until proven wrong. The residuals of doubt and hurt in a parent will linger long after the “all is forgiven” is spoken aloud.
We have to live with autism. I was told at various times in Our Kiddo’s life, we would have to live with our choices for him. Some meant it as a reassurance and some meant it as a criticism of what we did and did not do for him as far as treatments and therapies were concerned. Many in our families made it so much harder–harder than it needed to be–living with Kiddo’s autism. But I am living with it….living with autism….and my darling son….and learning and embracing it and making it my own. But I am living with it…on a daily, weekly, monthly and yearly basis…it is terrifying…but there is nothing else to do…what choice do I have?
Every month is Autism Awareness Month at our house!