I sat down to blog several times over the past week – and several topics came to mind. However, it was difficult to focus on a topic because I was locked in a battle with my son’s school over Extended School Year (ESY) services. For those of you that are not familiar with this term, it is a service that is available, over the summer, to students with an IEP that demonstrate a loss of knowledge or critical skill over extended school breaks. This program is designed with individuals like my son in mind. CJ has had 4 HH surgeries and each has negatively affected his short term memory, retention ability and slowed his critical thinking skills. He has received these services for the past 3 summers. However, CJ started high school this year and I have found all of the “unwritten” Special Education rules have changed. Notice I highlighted “unwritten” because in fact, the laws have not changed but the rules of the game seem to have changed. It has always been a challenge getting services because CJ’s difficulties are not obvious physical ones and it is easy to say “he just needs to try harder to remember”, or “he just isn’t listening”, or “he isn’t motivated” – or even better – “it is like he just forgets”! All of which are untrue, but hard to disprove to a closed mind. In high school, it is like he is just supposed to grow up and move on.
Today, we were notified that, after much discussion and legal proof on my part that the school was negligent in their handling of the situation, CJ will get ESY services this summer. However, it all comes at a cost. Our trust in the school is severely shaken, and CJ feels some members of his IEP Team – adults he had been told were his advocates – basically told him he wasn’t worth teaching over the summer, because he would probably just forget everything.
So why did I decide to blog about this? One, I knew that so many of you would completely understand what I am saying; and two, I try to find a lesson in everything. What I took away from this situation is that those of us who fight bigger battles – get bigger scars. Did I ask for this confrontation – absolutely not! But did I have the opportunity to show my son that he means the world to me and that I would go to the ends of the earth to support him – absolutely!
For so many of us that are blessed with an individual with HH in our lives, whether it is a child, a grandchild, a spouse, or someone we feel responsible for in some way – we will have plenty of battles to fight on their behalf. I just want to say, fight the good fight! It is hard to do day after day. The battles seem endless sometimes. But you are making a difference. CJ now knows that there are people in the world that will support him and there are those who will seek to put him down. He needs to be able to advocate for himself to the best of his ability, but he knows – without a doubt that his parents love him and will do whatever it takes to support him. Don’t we all deserve a Champion?