So we have an IEP coming up. Any parent who has ever participated in an IEP meeting knows the special kind of hell that is reserved just for us. It is a game for adults while the pawns are the kids. These are children whose lives can be changed for a lifetime if they only get the help that they so desperately need. Parents wrangle to get what their children are entitled to under the law while school districts try to keep their budgets in line or just disagree for purely reasons of precedence. And with an unfunded federal mandate to provide these services to those in need…well, it truly is a no win situation except in the simplest of cases.
This time when I walk into that room with principals, teachers, school district big-wigs, and lawyers I want to say something meaningful, poignant and straight to the heart. What I want to say is this:
“Every year parents of special needs children divorce. In fact, according to statistics provided by various sources it is estimated that 80-90% of couples whose children are considered special needs divorce; thereby disrupting the most vulnerable of families. These are families in need of two adults in a household to co-parent and provide support to one another while they manage hour-long tantrums, disruptive behaviors, and the close supervision that is often required of children with autism and other neurological conditions. Divorce is ugly. It changes the hearts of both children and adults. It makes kids feel unsafe and unsure about their future.
So why am I telling you this?
Unfortunately, our family may soon become one of these statistics. Although we are fighting to stay together I don’t know if we will win this battle. It is ironic because we have stayed together for 29 years with ABA therapists in our home 5 days a week. We have made it through home safety issues, seizures, special diets and numerous calls from the school. And we are tired. Worn out. And haven’t had time for one another for so long.
So what does this have to do with you and how can you help?
Do what is right by our children. Honor our requests instead of just setting them aside and ignoring them. We know our kids and often we know exactly what they need. Think in terms of the far off future and outcomes that will ensure that my child will one day be a tax paying American instead of someone who needs assistance their entire life. Provide those things you would expect for your own children or grandchildren. Think beyond and outside of the box. Do what is moral, courageous and honorable. And do it now. Stop being intentionally adversarial and work from the belief that if we cooperate, children with special needs can and will reach their full potential; thereby benefitting this community and nation.
Finally, I am letting you know that while I do not blame you for our marital issues, I do want you to be mindful that the constant extra challenges such as IEP meetings add extra layers of stress on top a marriage that can cause it to eventually sink. Remember these IEP meetings are not a game and our family is not something to be manipulated and discarded without regard. We are people trying to do our best in situations that most of you cannot truly comprehend.
In conclusion I ask you to take to heart the words of James Rachel who said: