This article is being published in our newsletter with permission from Barbara Day, Special Education Guide on about.com. You can visit Barbara Day on her website at http://specialed.about.com/
It’s easy to lose your perspective when you’re raising a child who has special needs. Sometimes it seems as though you live from crisis to crisis, always reacting to news from the school, reports from the doctor or screams from the neighbor down the street who wonders why your ADD child just put their family cat in the dishwasher. (Answer: “Because he could.”)
About Special Education asked parents who have raised their children and lived to talk about it one question: “What would you change if you could do it all again?” Here is what they had to say. As always, the names have been changed to protect the innocent.
Bob: “We weren’t ready for this.”
“Our son is developmentally disabled and has other problems on top of that. He graduated in May, and is now working with a job training agency here in town.”
“If I could change anything, I would make sure that transition services started long before his last year of high school. The school didn’t mention this, and we, like good parents, didn’t really push the issue. Now he’s 19, and we’re having to deal with the needs of an adult child, including guardianship, health care, housing, and everything else. We weren’t ready for this.”
Phyllis: “Know your rights.”
“We thought that our son’s school was pretty good about keeping us informed. They told us about meetings and kept us informed about Mike’s progress. We thought that was all we should expect.”
But we didn’t know what they weren’t telling us. For example, we spent thousands of dollars sending Mike to summer school each year. It wasn’t until after the summer of his Freshman year that we learned that the school district is supposed to pay tuition for Extended School Year (ESY) programs if ESY is included on the IEP.
“There were other things that we didn’t find out until it was too late. Mike was suspended from school for an incident directly related to his developmental disability. Later on, I found out that there was supposed to be a behavior plan in place.” (there was no behavior plan)
Ellen: “Be a leader.”
“I don’t know how many times I was told that the parent is the head of the IEP team. That may be, but what good is it if the head of the team doesn’t know what’s going on? Teachers deal with these things every day. I had no idea what an IEP was or what I wanted to have included. What should be included? How can I do the best job for my daughter?”
“So I began to study – again. When my daughter was first diagnosed with autism, I read everything I could about it. When we began to work with the special education teachers, I decided that I needed to learn everything I could about that too.”
“My daughter isn’t in school anymore, but I’m still attending IEP meetings, helping other families who have children who have special needs. Nobody should have to face those meetings alone, especially when they are supposed to be the leader.”