(A parent's response to a request from a teacher)
I feel that the school district we are in is one of the better districts in our area for receiving appropriate services for my son who is 7 and has ARND and ADHD, as well as many sensory issues, however, they have been very little help overall. My frustrations include, working hard to put together what seems to be a comprehensive IEP only to find that unless I babysit the professionals responsible to implementing it, many thintgs don't get done. I can not spend each day at school making sure his IEP is working the way it should. I think the reason they do not take his IEP seriously is because he is not cognitively delayed, and does not have the facial dysmorphology of full FAS. They look on him as a typical kid.
I personally have not only not received much support from them, but have been made to feel that I am "making up" my son's issues, or if it is even acknowledged that he has some issues, then I have been questioned about what events at home might be causing him to display extreme behaviors. As though if we could just get our home life under control his disability would go away. I have been frustrated by the way that teachers who do not have a good understanding of alcohol effected children try to oversimplify the problem. I even had one teacher (a special ed. teacher!) tell me that my son just needed "to go outside and play" to resolve the problem of volatile behavior that I had expressed concern about.
So I guess for us the bottom line is that the school staff does have some individuals who are supportive, for the most past those people are too overworked to offer any concrete support for either my son or myself, and they have not referred me to any special programs that would help my son. I have tried to educate them to the unique issues characteristic to children who are alcohol exposed and most of them do not have the time, nor the interest to listen. There are a few bright spots, professionals who seem to truly care about my son and are concerned that his school experience has not been a very good one so far, unfortunately those "bright spots" are usually around for only one school year and then are moved on. The consistency that my son needs so desperately from year to year is just not there.
We have considered very seriously homeschooling him and might still take him out of school. But because of his frequently volatile behavior it would be so difficult to have him home full time and I don't think it would be fair to his younger sister, who is at times frightened of his outbursts. Also if we took him out of school it would likely be for the long haul, the school districts are not going to suddenly be accepting and supporting of the alcohol effected child.
One last thought... I feel that there are those at my son's school who are frightened of his disability. Maybe they have the idea that all FAS/FAE children are hopeless, out of control, and dangerous. And while, yes, he can blow up and tantrum, for the most part he is still just a child who needs the same things all children need. He needs to be taught those things that he can learn and will help him function in the world someday. He needs a few, even one, friend to laugh with and feel a connection to (we are still waiting on this one) and he needs to feel that he is OK the way he is and that there is a place in the world for him. I think people can forget that these children are very much the victim of circumstances that they have no control over, first their prenatal exposure to alcohol and secondly they are victim of their ability to function only as well as they are capable of given the extent of the damage caused by the alcohol.
I hope this is not too long, I tend to go on and on about those things that are so important to me.