Lesley of the Lion's Heart

Lesley is my only daughter and was born premature, low birth weight (about 2 pounds), the first of the twins (her brother was born 30 minutes later) and both have a form of autism known as Asperger's Syndrome.

She is 16 years old now and the bravest soul I have ever met.

Lesley attends the local high school but will never get a regular diploma because she cannot do high school math. She will receive a life preparation diploma, I think, after she does her 12 years but her dreams, her hopes of a future life, extend far beyond the limits of our small Southern city.

Lesley wants to travel the world, beginning with the United States. She researches various areas of the country and reports all of the attractions and features to me, puts photos of different places on her computer desk top and asks me what I think of them. She talks of sailing around the world in a one-person sail boat (with a small motor in case of dead calms) and she wants to live alone, with perhaps a friendly dog for company.

Lesley also has a knack for writing. She has written several long stories of at least 12 chapters about the adventures of various brave animals or people from another dimension. Lesley loves the characters of Severus Snape and Sirius Black in the Harry Potter series, as well as Strider (Aragorn) in "Lord of the Rings." Not having grown up with a father (I divorced him many years ago for his cruelty and lack of support) she instead created an idealized one for herself out of parts of these heroic figures. Her only friends are the ones she makes up inside her head. She is lonely and cries about not having real-life friends, but I tell her to find friends, you must first be a friend, so we are working on her "people" skills, how to make eye contact and smile and say "hello" appropriately.

Lesley also has a penchant for science, both biological and chemical, and would like to bring alchemy back to the realm of viable scientific research if possible (I tell her it is not but, oh well.) Bottom line, her imagination is great and flexible and expands her world much farther than her actual education will allow.

My quest is to help enable Lesley to reach some of those distant stars to which her imagination and interests incline. I cannot bring fictional characters to life but I can show her how to create some of her own and perhaps turn it into real stories that can be read by others (currently, all versions get shredded before I can read them.)

Or perhaps I can help her get the GED and continue her education in some real scientific field, like animal science or botany. Whatever I can do to help her, she deserves the very best I can offer so she can one day do her best on her own.

Robert Browning once wrote, " A man's reach should exceed his grasp, Or what's a heaven for?" Subsititute "girl's" for "man's" and there is my little Lesley, my only daughter and always my little girl. May God give me the strength and wisdom to help my daughter reach whatever heaven she desires. No one deserves it more.

Coping with Asperger's in SW Georgia

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.