Is not an easy thing, in fact it is a constant battle. I always feel like I am fighting, fighting off people who want to spend my son's money without good reason, fighting to get him the services he needs, fighting insurance companies, doctors, schools etc. My current fight as of yesterday is incredibly frustrating to me. Ethan is starting his sixth year at the same elementary school. It is the school that the district placed him in because it is the school with the program to fit his needs. Unfortunately it is not the closest school, which has never been a problem because they provide transportation on the wheelchair bus. The problem I have now is the transportation office is saying that policy has changed, due to budget cuts, and they can take my son but not the other kids ( this is a BIG deal, as Ethan is traumatized when he has to ride the bus alone). I understand budget cuts, but find myself wondering just how they apply in this situation as Ethan has generally been the ONLY one on the bus and it requires no additional effort or funding to transport the other children to and from the same school to the same drop/pick up point. Even when there has been a second wheelchair or another special ed student on the bus there has always been space for a dozen other children. It makes it very hard on me because my options are now 1. transport all my kids to school and hope that the lift in the van does not need servicing or the van does not have to be in the shop at all during the school year or the kids won't be able to get to school. 2. Change the kids school to our neighborhood school so they can walk to school, but who does not have a program to support Ethan's needs. 3. split the kids up and make Ethan be traumatize two times a day/5 days a week which will probably significantly impact his education in an extreme way. 4. Fight to have policy changed or an exception made.....I am fighting, but so far not a budge. It is frustrating because Ethan is impacted negatively with all the other three options. I am waiting for a call back from the director over transportation....a call back I may never get. I may have to call every day, feel the stress of the situation every day, maybe even multiple times a day before there is any movement in the right direction. BUT, if in the end we get results, it will have been worth it. The sad thing about it is that with this new policy they are hurting kids and families like ours with no real benefit, they are not saving money, and by making us drive two vehicles to the same destination they are depleting finite resources and adding to pollution, and the parents and kids are stressed and not in the ideal frame of mind to be successful educated or productive in their jobs. I guess that is one reason why parenting a special needs child is not right for everyone, because it requires a level of commitment and passion that not all of us can continue with for eighteen years and beyond and still be sane, or functioning. For me, Ethan's smile is worth it all.
