My twins were born 16 years ago, just before I turned 40. Both babies were premature, and of low birth weight (I could hold my 2 pound daughter in the palm of my hand.) They stayed in the hospital one week after birth to enable their lungs to develop a bit more, and then I took them home. Both qualified for WIC as I was the only parent working to support them. I divorced their father before they turned three due to his violent behavior which threatened both me and the twins.
Both children exhibited developmental delays very early on, especially my daughter, who easily qualified for SSI by the time she was four due to speech problems. However, my son, her twin, did not qualify although his behavior was far more uncontrollable. The SSI psychiatrist (the one who worked for Social Security) misdiagnosed him as having juvenile bi-polar disorder (an almost unheard-of diagnosis). I had to pay for his medicines out-of-pocket for several years, as SSI does not cover bi-polar disorder.
Frustrated, I finally, I took him to a juvenile psychiatric specialist in Thomasville who correctly identified my son’s disorder as Asperger’s Syndrome, a high-functioning type of autism and she asked to see his twin. The minute my daughter walked into the office, the doctor said she exhibited even more symptoms of Asperger’s than my son did. Both children qualified for SSI after that.
Being qualified to receive SSI insurance and payments however, does not guarantee delivery of services to treat the disorder. Here in South Georgia, both twins were placed in special education courses, but because my son’s behavior was more violent and disruptive, he was placed in a separate classroom with behavior disordered children and was exposed to even more violent behaviors than even his disorder warranted. When he could no longer be contained in this classroom, he was moved to another school in the same area before being permanently moved to a school for behavior disordered children in a neighboring county. He was contained there for two and a half years and was supposed to be receiving home visits from “specialists” … we went through four such specialists who visited my son twice each in our home and never returned.
All the while that I was trying to get someone to educate my son- with poor to non-existent results – he was seeing a psychiatrist at the local government health clinic whose solution to my son’s behavior problems was to give him increasingly powerful anti-psychotic medications, some of which had fatal side effects if not monitored closely. When I realized, after about four years of these visits, (where I was not even allowed to ask the doctor questions, had even been told that he “did not have time to listen” to my concerns) I summarily removed my son from all medications as I feared they were doing more harm than good.
Over the last three years, since I removed my son from medications, he went through puberty and twice I involved local public safety to remove him from my home due to the nature of his threats … but I will never do so again as both times he was locked up in an institution in mid-Georgia where both times he was brutalized (beaten only, thank God) by more powerful and disturbed teenagers than himself. I have since kept my son home and he receives no schooling at all, but I cut a deal with the local Juvenile judge to home school my son and at least his is not in a public school system where he could hurt someone else.
I still have hopes that my son – who is now six feet two inches tall and weighs 250 pounds-, will outgrow some of his behaviors and indeed I can see where some progress has been made. But his whole world revolves around a 10 foot by 10 foot square bedroom where he has his computer, a TV and his video games. There is no contact with other children, he has no “off-line” friends and his education stopped more than a year ago when he flatly refused to do any of the assignments I gave him.
Still, I do not want m y son at the mercy of the “system” … I do not want his civil rights violated and I do not want him hurt. I feel I am doing my best to protect him from others and from himself, and I hope that one day I can find a place where he can go to day school, earn his GED and come home to me at night, perhaps learn to drive a car and get a little job to make some spending money.
My daughter is in high school now, but will never graduate as she cannot do math. I hope to get her into GED classes so she can get her driver’s license and perhaps get a job, as well. She has big dreams of moving out on her own and making enough money to travel but I will be glad if she can just get a local job and come home to me every day where I know she will be safe. She is far too trusting and I am afraid someone will hurt her or take advantage of her, although her social skills are a good bit better than her brother’s.
I know I will have to take care of my twins in some capacity for the rest of their lives, but sometimes it gets hard trying to be everything to them. I have had no help from the local school system for Dale, for sure, and there are no programs in this area of the state for children with autism. (The closest “school” is in Atlanta and yes, I could probably apply and let him go there, but he would be so far away I would not be able to see him or make sure he is OK.)
My next step will be to apply for help from the Vocational Rehab center in hopes that I can get some job training for the twins after they get GEDs, and maybe the center can help place them in jobs, as well. I only hope it will improve their quality of life and give them opportunities that the public education and health systems here never did.
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