I was talking with a coworker today about the parents of the students we care for. We talked of the fact that many parents do not make arrangements for their child after they leave the school we work for. I remember Thomas’ first IEP meeting at my school years before I even dreamed I would work there. The school team asked Tommy and I what our plans were for Thomas in the future. I remember feeling very unprepared for that question and we didn’t know how to answer them. One person said, “I suggest you write down group home placement; this question is your plan for when Thomas leaves this school.” Tommy and I were in agreement that that seemed logical and agreed. In the meantime one of the pastors from our church who has an adult son with autism had phoned me to gently suggest we place Thomas on the waiting list for group home placement. Thomas was 12 years old. Pastor Larry said he knew how old Thomas was but time passes fast and the list was long. Tommy and I agreed and I called the appropriate agency to ensure he was placed on this list. It was probably one of the best things we did for Thomas at that time.
When I was telling this to my co worker she mentioned how hard it is for parents of special needs children to open up to social workers, case managers, IEP personnel, etc…. Life is hard enough caring for that child; you then had all those people up in your business asking a ton of questions just so you can access services for your child that he/she is entitled to. I mentioned that it took years for me to allow an outside worker in my house. But that when I did allow a direct service provider in to my home it was a great experience for not only Thomas but my girls as well. I hadn’t thought of my hesitance to allow an “outsider” in my home in years. And I also hadn’t thought about all the interviews and in depth, personal questions I answered and endured just to get the worker set up to work with my son. Our conversation took me back and I didn’t realize it until I returned to my office and sat at my desk and was “back” to my now reality.
This was the second conversation I had with someone I work with about Thomas. How decisions Tommy and I made years ago were not about us as his parents. They were decisions made for what would be best for Thomas and our other children as well. Every family situation is different. However one thing that is constant and universal is that none of us are going to live forever. And that reality stings and is scary. I do not expect our girls to take care of Thomas when Tommy and I are no longer here. That is one of the many reasons why Thomas is in a group home. Planning for the future when that future is not what you had originally planned for is difficult. Tommy and I were fortunate that we had people in our lives who had the incredible, caring nerve to tell us what we should do for our son for his future. We are also fortunate that we chose to listen to unsolicited, well meaning advice. That we didn’t balk and get upset and rebuke people who were really in our corner.
I find there are parents who refuse to discuss the mere thought of group home placement. As if the words “group home” are not to be mentioned at all because their child will “never” be in a group home. The same goes for day programs, Thomas likes to go to his program, it gives him a purpose. Yet when I mentioned which program he attends to another parent, that parent shut down the conversation because that program wasn’t what that parent wanted for their child. We all want the best for our children. Whether that child be special needs or a typical child. And there are limits to what some day programs can provide. On the other hand there are criteria that must be met for the student to attend certain day programs. There is no one size fits all.
I found the conversation with my co worker and the emotions it brought up to be a reminder that some experiences shape the future if you let them.