Warning, this is a departure from my usual light fare. It is preachy and angry, but I feel compelled to write it.
Being the parent of a disabled child is difficult work. It is difficult physically, financially, socially, emotionally, and in every other “ly” you can think of. Parents get exhausted from lack of sleep, injured from lifting heavy children with physical disabilities or dealing with children with behavior issues. The financial drain can be tremendous; often parents have to stop working, as I did, to be the caregiver as well as parent to the child. Friends form the social circle often disappear because they “don’t know what to say,” cannot handle the behaviors or equipment or they simply fade away because you cannot be there as a friend the way they need you to be. The toll it takes on ones emotions is immeasurable, and is compounded repeatedly; but the emotional toll is probably the most obvious to the outside world.
I know all of this, and experience every bit of it. Yes. The lows are low. But guess what? The highs are very high indeed. What you lose financially and socially is more than compensated for by what you gain. Only parents of kids with disabilities are in on this little secret. If you try to share this secret with folks not in this situation, you often get the pity-filled doe eyes that seem to say. “Don’t put a brave face on for me.” I think I have kept my sanity by focusing on the highs and rejoicing in them. It is not a skewed version of reality. It is my reality. I started writing this blog to convey that reality, but I do not really need to convince anyone.
I am more than Maggie’s mom. I am her advocate, translator, protector, confidante, chief cook and bottle washer. Parenting her is different than parenting my sons. I am not preparing her to leave the nest and be on her own. That will never be an option for her. She may someday live somewhere else, but she will never be on her own; Steve and I will always be in charge of her. It is daunting to think of, but it is also an incredible privilege. We are the two people in the world that she trusts completely and always will. Her well-being is in our hands.
Parents can continue to function and deal with the overwhelming responsibility of this but only if they get help. Our society, like those of most developed countries in the world, recognizes this and help is available. Parents like me are in the (sometimes) difficult position of asking for all the help we can get. I know that I cannot do all of this alone and I am very thankful that there are programs in place to help. There is never enough help, of course, but it is better than it could be. Parents have to ask, beg, scream and do whatever is necessary to get whatever is available
I was sickened to read this story today. http://www.cnn.com/2010/CRIME/07/22/texas.autistic.children.killed/index.html?video=true&hpt=T2 This mom could not handle the responsibility. She “didn’t want” autistic children, she wanted “normal children.” She killed them both. She tried to get them to drink poison and when they refused, she strangled them and then called 911 and told the operator all about it. Perhaps she reached her limit and snapped, perhaps she could not find the highs in her life, perhaps she never saw or could not measure the gains to compensate for the losses, and perhaps she is just evil. I do not know. No matter what her story was, those kids trusted her completely and she committed the ultimate betrayal.
I know it is hard to ask for help. I know it is hard to walk away, but in order to be their protector, in order to be their mother, that is what she had to do. She failed them because they were not what she wanted. They were not “normal.” They needed her more because of that and she failed them.
My sympathy extends to her children who did not get a normal mother and to their father who lost his entire family.