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Parenting a Young Adult with an FASD

My son came into my life at age nine and a half. At the time I was married with two pre-teen daughters. An agency in town was looking for host families to open their homes for a 10 day period in hopes of helping the children find a permanent family to follow through with an adoption. A ten day commitment seemed easy enough, then life happened. We were approached by the agency and asked if we would be willing to host a sick child that was coming to the states for an evaluation. Again, not a problem; we could handle a child with medical problems for 10 days.

A boy the size of a four year old arrived at our door weighing in at 32 pounds and unable to walk 10 feet without losing breath and turning blue. His head was barely functioning and it was nothing short of a miracle that he survived the flight over in spite of having a medical escort. Within 3 days he was having reconstructive surgery and remained in the ICU for over a month. Our family was all her had here and as I tell him all the time he was born into our hearts during that hospital stay. Unable to return to his native country and hope for an adoption as the other kids had he was in need of an immediate adoptive family and as fate would have it we were it. Little did we know that his medical/heart issues were the least of what was to come.

Once he started to heal medically the next big hurdle would be for him to acquire the English language. He did so in a short six months seeming to be a bright boy with a bright future. It didn’t take long to see that a lot more was going on. Many misdiagnoses followed. He was given a myriad of medications and therapies all to no avail.
He was 15 years and six months when the final and correct diagnosis was made by a specialist is New York. He scored a 4 out of four on every criteria used to diagnose FASD. So many years had been wasted. During that time his struggles with academics and well as social interactions grew. His classmates were maturing and developing and he was stuck in the body and mind of a much younger person. It was not much later as an eighteen year old freshman in high school that he started to self medicate with alcohol and drugs.

By then I was single parenting him. He was of legal age and my hands were tied in many ways although I did eventually gain legal guardianship. He was denied services through DDS because his IQ was only a few points over the cutoff of 70. He appeared “normal” and expectations from the outside world continued at a faster pace than he could handle. An out of district school placement spoon fed him enough to accommodate earning a high school diploma at age 21. All the while he was struggling to find a place he belonged. Weary from trying to give him all the supports he needed by myself he started in the first of eight residential treatment facilities. While well intended the overriding philosophy of “he’ll mature out of this” was simply off the mark. I cannot count the times I tried to educate the “professionals” that he suffered a permanent pre-natal brain injury. I of course want him to be the best he can possibly be but in doing so he will require 24/7 support.

After two years of short term placements he is back home and again I find myself constantly looking for the supports to have in place when I can no longer do it myself. Every day is different and brings it’s own challenges and triumphs. His dream, as mine is, is for him to live as independently as he can. He needs daily support/reminders in everyday functions; time management, money management, self care etc. A job coach has facilitated his part-time employment and he is eager to work as much as possible. He struggles socially and despite his bravado longs for a true friend.

I share this information in hopes that we as a community can build the strength to fight for services as the Autism community has. Our children need many of the same types of supports and are equally deserving.

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