A hand up, not a hand out

No, this isn't Noah, I didn't think to get a pic, but this is pretty close to how he looked.. lol.

Sixty seconds. What can you do in sixty seconds? Left unsupervised for that amount of time, Noah can cause a devastating amount of damage. To be clear, unsupervised here means having an adult present, but not attending to him directly. I could only imagine the amount of damage he could do if there wasn’t an adult in the room for that length of time. Thankfully, I only had a mess to clean up.

We have been blessed to have had access to a waiver that allows us aide hours for Noah. As I look back on Noah’s life, I could hardly imagine it without aide’s present in his life. It is one reason I have always held public school paraprofessionals in high regard since they perform similar work. Without the benefit of family living close to us, we have leaned heavily on that blessing. In fact, as I look back on Noah’s life, some of his most critical, turbulent times were when we were without an aide or operating with an aide only part of the time.

It’s hard to explain the amount of pressure & stress that my wife and I feel as parents of a child as severe as Noah. I don’t say that to compare with others or to obtain pity, but to try to paint an accurate picture of our tenuous lives. To do it without respite support, forces us into survival mode. It exacerbates our inability to make friends and build community support through the natural interactions that others typically have, but we are unable to experience. I feel sometimes that others misunderstand how critical this is to Noah too. Having adults supervising him who are sharp and attentive is critical. When my wife and I can get away and catch dinner and a movie or go exercise at the YMCA together, we’re much better parents to Noah, when we are the ones supervising him. It also allows us to safely take him out into the community more often, enriching his life further.

When my wife & I don’t have semi-regular respite, we’re exhausted, distracted, anxious and depressed. The stress that is brought on is the key trigger for medical conditions that my wife and I both have. Fibromyalgia, Crohn’s Disease, Hypersomnia & Insomnia typically are aggravated most often when we are without adequate aide support for Noah. That combo is a recipe for being present, but not supervising well. Its also a recipe for a mess of slime in less than 60 seconds of spacing out.

Noah can wander and doesn’t understand danger either, so its tragically comic when we have repeatedly heard from the “state” that he doesn’t require supervision or doesn’t require as much supervision. I’d like to grab that bureaucrat by the collar and require him to shadow an aide for my son for a day. I guarantee that it would be a life altering, perspective changing, respect building experience to remember.