Does your school know what to do with a child with Fetal Alcohol Spectrum Disorder? Probably not. Plenty of kids with the disorder never get diagnosed, and are tagged as behavior problems. Others have behaviors that look enough like autism or ADHD to get them stuck with those labels. After all, the conventional wisdom has long been that there's nothing you can do about FASD, so might as well just treat the symptoms.
But that's just not true. There are great resources specifically designed for teaching kids with FASD. And there is a growing body of experience from parents who have shepherded their kids successfully through school systems. I'm one of them, or will be when my son graduates high school in 2012. While there's certainly still enough road ahead that we may hit some bumps, I can look back and share what worked along the way to get him where he is now -- a high-school junior in inclusion and resource-room classes with decent grades, good friends, and a support system of grown-ups who think he's terrific.
Here are my top five things that made school successful for my son with FASD:
1. Self-Contained Special Education. My son was in a self-contained classroom from age three until his sophomore year in high school, when he tried one inclusion and one resource-room classroom and did well enough to slip all the way into the mainstream his junior year. Coming up through elementary and middle school, though, that small structured self-contained class was invaluable to him. Additionally, having teachers who were teaching special education because they wanted to and were willing to consider creative solutions in their classrooms was a huge help. I'm not sure a mainstream classroom could ever have offered the flexibility he needed in the early years. Self-contained kept him safe and successful, and if the trade-off was perhaps slower academic progress, it was worth it. His classification was Multiply Disabled, but I've heard of kids with FASD also getting a classification of Other Health Impaired.
2. One-on-One Paraprofessional. I don't know if I would have been able to get a paraprofessional assigned to my son if he hadn't had an awful classroom experience in kindergarten -- a self-contained classroom on a more ambitious track, with kids whose parents did not want him there At All. (Yes, that sort of thing even happens between special-needs parents in self-contained special-ed. Go figure.) He was given a one-to-one para to sit with him in the back of the room and keep him out of everybody's way, and although that was a less-than-ideal scenario for that year, it turned out to be a godsend, because they never made us give the para back. Even as he transitioned to a more appropriate classroom. Even as he moved on to middle school and high school. The person in the job has changed, but the school has never made a serious attempt to discontinue this service because it so clearly works. His para re-focuses him, provides constant supervision, provides consistency, and helps him keep track of assignments and papers. Invaluable.
3. Appropriate Behavior Management. I think behavior management has to be the focus of any school discussion for kids with FASD. They can't learn anything if you can't manage their behavior. They can't stay in school if their behavior becomes unmanageable. There are absolutely ways to manage the behavior in a way that neither lets them off the hook nor throws the book at them. Teachers will find that these methods turn a kid who's a constant scudge into a functional member of the classroom. One year, when a behavioral specialist was slow in coming to write a behavior plan for my son, I wrote one myself, and it wound up following him as part of his IEP for the next few years. I think it provides a pretty good explanation of appropriate behavior management for students with FASD; you can read it online, and use this and other templates to develop a plan that will work with your child. Whether it's officially implemented or not, it becomes a way to help teachers understand what discipline will work and what won't.
4. Parental Involvement. Many, many, heartbreakingly many special-education students do not have parents who get involved in school. Parents who can be present at the school as volunteers, who can form relationships with teachers and administrators, who are aware of things going on in school before someone gets around to calling a meeting and sending home a report, can make a huge difference for their students -- all the more so if your child has an often puzzling and invisible disability like FASD. Do everything you can to be a constant friendly and helpful presence for school personnel. Be a class mom, volunteer in the library, attend every conference or event that can put you in contact with school personnel. I can't tell you how many times teachers or child-study personnel stopped by the school library when I was working there to make an informal observation about my son and strategize a solution. Because I was able to collaborate with them informally throughout the year, we were all on the same page and the same team when IEP time rolled around.
5. The Label. There's a lot of talk about person-first language these days, about seeing the kid before the disability and not burdening children with labels, and I get why parents and educators think that's a good idea ... but it's a really bad one for kids with FASD. They need to have their behavior seen through the lens of their disability. They need people to understand that they do things because of the way their brain is wired, not because they're bad or disrespectful or uncaring. And they need people to give them praise and positive reinforcement when they're doing things right, recognizing that "good" behavior is not automatic or easy. From the first day of school, hand out information on what FASD is, what it looks like in your child, and how educators can help -- I have everything you need to make a packet in my article on Preparing the School for Your Child with FASD. Don't assume the teacher has read the IEP. Certainly don't assume that non-classroom teachers -- the gym teacher, art teacher, music teacher, recess aide, lunchroom aide, school nurse, principal -- have even had a chance to see it. Spread the word in a positive way. The right information will be helpful to everybody.
In the booklet Fetal Alcohol Syndrome, Fetal Alcohol Effects: Strategies for Professionals, Diane Malbin writes, "It's been said that parenting children with undiagnosed FAS/FAE is like trying to find your way around Cincinnati using a road map of Denver. It's a good map -- it worked in another city, and some of the streets have the same names, but they just dead-end and don't go where you expect." The same is true of teaching, though schools try to get by with the wrong maps all the time. For my son, the correct map included the five things listed above -- a self-contained classroom on a lower-stress track, a one-on-one paraprofessional, plenty of Mom involvement, appropriate behavior management, and acceptance of and advocacy for his label of FASD. Your child's may be similar or have its own twists and turns. But your child is relying on you to get that GPS in gear and figure out a way around.