Dan had been out with his Dad one day setting the crab pots. They did quite well. When it came to cooking them he was worried he would get pinched so he put on the pot holders to protect himself.
We are the parents of a 16-year-old son who received
an FAE diagnosis when he was about 12. We had always
suspected this since we knew his biological motherís
prenatal history. Dan was removed by Family Services
at 6 weeks. He was returned home a week later and taken
again along with his siblings at 11 weeks.
Again he went home at 4 1/2 months after his biological
mother completed substance abuse treatment.
Unfortunately it didnít work and the 3 kids were
again removed a few months later. The mom decided
to relinquish him and allow us to adopt him when he was one.
She eventually got her other two children back, but they continued life in and out of foster care and relative placement.
People seem to be amazed we have continued to keep him in our home. I admit there were times when I would have found some place if there hadnít been so many roadblocks and also I didnít feel there were any appropriate places for him. There is always that fierce defense we parents of these kids seem to feel.
There have been many really rough times, and we have been blessed with support from our family. Our birth daughters are all older and have taken Dan for some of the times we really needed a break.
I would like to share a few of his behaviors that have gotten him in trouble but still end up being amusing in a way not many understand unless they have experienced it themselves.
A few years ago Dan convinced me to give him enough money for a new pair of jeans, a haircut and a few other things he wanted. I wanted to say no, but didnít have the energy for a fight, and decided he also needed to learn some skills to become self-sufficient or at least have some self-help skills. He left in the afternoon and called to check in a few hours later. He said they didnít have his jean size, but could take care of the money. We had an argument about that, but he chose not to come home. I did go looking for him but didnít find him. We got a call later that night. He had been stopped by the police for being out after curfew and had also been drinking. He wasnít drunk but had been doing a little drinking. He knew he was in big trouble, but we decided to talk the next day.
Of course the money was gone. When I asked what he had done with the money, his answer was "Donít you think Iím trying to figure that out too.?" He then tried to remember. I said the liquor probably cost $10 or so. His reply was "No, it was $30. I bought the good stuff." Then he remembered he did get a haircut and then bought cigarettes. He has always looked older than his age and said, "You wouldnít believe this, mom. I went in to a little store and asked for cigarettes. When they didnít ask my age and told them I wanted two packs." He also bought dinner at McDonaldís. He is really a bright kid, and was adding up his expenditures. He had to really try to recall what else he did. He then remembered that he spent the rest to take a cab to the party he attended. He had spent it all, so he didnít have any left to get home, so had to walk, and that was when he got picked up.
Last year we were to a point where we really thought he needed to go to a residential placement. We did a lot of research and found a place we thought would be perfect. Dan had quit school and this was a place that worked with kids with brain disorders. They would help him get his GED and also explore vocational possibilities. They also had transitional living facilities where he would qualify for later. We sent records of all his evaluations gathered over the years, both neuro-psychological and psychological testing that had been done over the years. They found him appropriate for placement. The roadblock came when Medicaid refused the request. They based their refusal on our local mental health facilities that stated they could provide services locally. We had been seeing them off and on for over six years and had never found any satisfaction. They just didnít comprehend at all what the problem was or how to deal with it. The only way we had been getting Dan to cooperate at all was with bribes.
I contacted the local facility and they set up a meeting. They said the only way they could provide us with services was to get an SED, severely emotionally disturbed, label placed on him. This was so Medicaid would authorize it, since our insurance wouldnít cover any. Their other solution was to involve the criminal system. We were to call the police whenever he was damaging property, out without permission or verbally or physically abusive. They said he had to be made accountable for his behaviors and a trip or two to juvenile jail would teach him that. The only "kiddy" jail around happens to be in another town. We have no juvenile detention center here. We do have an emergency home but it only has room for six kids. The director was at the meeting and let it be known that Dan could come there, but 60% of the time, it was full. Basically they were telling us that to get help, we needed to get him into the criminal system.
When we tried to explain that he wasnít severely emotionally disturbed but this was all a part of fetal alcohol behaviors, they couldnít seem to understand. They said they would teach him the skills he needed to have self control and change his behaviors, and then they would take away that label. My response was that the only way they could do that was if they could perform brain surgery to correct the damage that had been done in the womb. Over the years every suggestion they made to us didnít work and only escalated the problem. No one would read the information we had been giving them over the years or believe the research we had been telling them about. We only received criticism for not following up with them.
We are fortunate in Alaska to have Deb Evensen receive a grant from the State to work with parents and professionals. The director agreed to meet with her when she was here. She had been coming to advocate for another FAS child that the school wanted to label SED instead of the correct classification of "other health impaired." We had a successful meeting, and the director was really impressed with Debís explanation of behaviors and all the other ramifications of Fetal Alcohol Syndrome and Effects. He seems to understand the importance of training professionals to help both the parents and the kids. Hopefully we will make some headway.
Each of our kids are so unique, but so many of their quirky little behaviors are similar. As parents we will fight and defend them, and learn from others in our same situation what works best. We are the ones that have to educate the professionals. We will let them label us as uncooperative when they insist we do what we know is wrong and not best for our children. It has been a slow battle but we are beginning to "see the light" and some progress.
He passed his GED on the first try with better than required scores. Now his is beginning his journey into the employment arena. His first job only lasted a few days, but the job he has now seems to be working out. We still hold our breath every day to see if he made it thru the day. So far, so good.
What a remarkable change our director of mental health made after Deb Evensen was here to talk to him. She basically told him that everything they had been trying wasn't working and sometimes making things worse. He even stated publicly that the community had done a big disservice to Dan and our family. He is finally supportive and not blaming us. He is planning on having Dianne Malbin come this summer to do some training for his mental health workers. Things are looking more positive all the way around.
Still have our rough times but things certainly are better. So great to have the needed support from professionals and the respite provided by the in-laws and my two older daughters.
He may always need us for support, but we will always be there and find a way to get through the bad times. We are rewarded so richly with the good times. He can make us laugh and make us cry and make our life so interesting.