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Friday, January 22, 2016

A Parent's Plea

In The Politics of Autism, I write that parents of autistic children often have a difficult time, especially when their children have behavioral problems.
The only sure thing is hardship. “With rare exceptions,” wrote journalist Jane Gross in 2004, “no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor intensive, and managing challenging behavior requires vigilance.”

Getting help can be just as tough. “Once you have that diagnosis in hand, the questions start piling up,” writes autism parent Mari-Jane Williams. “What services does he need, and what will insurance cover? What really works, and what is just a hopeful shot in the dark? How can she get the most out of the public school system? Who coordinates all of this? Do you need a small army of specialists or just one really good behavioral or occupational therapist?” Very quickly, parents will learn that there is no one-stop shopping in the autism world. Various providers offer various services, with various levels of support from the government, which largely depends on where one lives. Wherever they turn, parents run into red tape. “Trying to obtain services for a special-needs child is a never-ending process,” one mother told a Tennessee journalist. “Taking care of the children is much simpler than taking care of the paperwork.”
Pennsylvania autism mom Natasha Walizer writes at The Huffington Post:
I'm an emotional mom. I know I am. And anyone who wants to say something about it can shut up. There is no Tiger Mom happening here. I know "things will get better." I know "this too shall pass." I know I should just let them "be boys." I am letting my sons be boys. Majority of moms will tell you that they want to raise healthy, strong, polite, respectful young men who will be productive citizens and do good in this world. Guess what - I want the same thing. And guess what, I will succeed. But right now, don't blame me for crying after a struggle with my son. I cry because I don't know how to help him. I have no idea what he needs, besides his daddy and I. I'm not crying about what happens. I'm crying about why I can't help him when it happens. I don't know how. I'm mommy. I'm supposed to be able to fix everything. Everything. When you can't, you feel as though you have failed, as if you are incapable.
We are seeking help, but the state has a different idea of when it should all happen then we do - don't get me started - that's another article. Out of college with a psychology degree, a young bouncy coed has the possibility of being a TSS, a therapeutic support staff. With a little bit of a higher degree, a TSS can become a BSC, a behavioral specialist consultant. This is where we're at ... waiting on our assigned TSS, who can sit with my son and help him focus, sit still, work on his letters, remain quieter than he is now. This person can come in my home and help us know how to handle a disruptive dinnertime, arguments between brothers, an impatient older brother.
I want to help my child, but until I know how, there might be some tears ... and a lot of screaming.