As the parent of a child with special needs, there are many benefits to which we are entitled. Some of these are necessary to access services for Riley's well being, others are available, but not really necessary. Ironically, there are times I find myself feeling guilty for using "the system" even though I do my very best to maintain hyper-vigilance in not abusing the very same.
Ultimately, I guess these choices come down to moral choices: just because I can does not mean I should. For example, because Riley has Medicaid, my other children could receive things like free lunches at school, et cetera. We do not need these services, so we do not pursue these options. In my small way, I feel like I am allowing someone in need to gain access to the benefits we are not using.
However, my personal attempts at altruism are not without great frustration. Riley has Medicaid because it is the only way he can have a non-academic aide in the classroom with him. This aide helps him to work on his behaviors in classroom and social settings. These benefits also help with medical expenses and psychological expenses, including medication. We provide primary medical insurance (at no small personal expense) for him voluntarily to offset the remaining expenses billed to the various levels of government, yet we still constantly fight with the Medicaid agencies to approve his medications, services, providers and the like. We do our part where we can, but that very diligence seems to make us targets of the same system we are trying to work with collaboratively.
Last year I applied for and was granted a handicap parking tag for Riley. Every time I pull into a marked handicap spot, I feel guilty. I know this is irrational, but the guilt is there nonetheless. The reason for the application? Riley has no sense or awareness of danger. If Riley is angry or excited, there is a very real possibility he might run from me. If this happens in a parking lot, he poses a danger to himself and others, hence the parking pass. It limits the distance between Riley and his destination. My guilt? While using the parking pass, Riley has not had any major episodes of taking off or throwing himself face down in a parking lot. That said, it only takes once...and if I had the access to this benefit but did not use it and he was harmed, I would never forgive myself. My guilt is my problem. My obligation is to the safety and well being of my child. The looks from others when I utilize the pass? Ultimately, not my problem. If Riley is not with me, I do not use the pass...even when the closest parking spot seems to be miles away...but using it for other than its intended use is not the right thing to do, so in my feeble attempt to keep my personal karmic balance intact, I accept the blight of long distance parking.
I feel fortunate that we have access to the wide array of benefits available to Riley. I do my best to respect and appreciate the system and give back where I can. I take exception with those who abuse the system as I feel they jeopardize the rest of us, but I limit myself to the things I can control. There are times I could probably do a better job of stepping up to the plate and make others aware that some of their actions might be considered abuse of the system, but I frequently do not for two reasons: 1) I am not the morality police of other and, more importantly, 2) there is frequently more to the story than what is apparent on the surface of things and, unless they choose to tell me, these additional circumstances are probably not any of my business.
I set my personal boundaries and try to keep my personal karmic balance intact. In parenting and in life, we all just try to put one foot in front of the other, accept help where we can and live to fight another day.
