By Rosemary Dubrowsky
The day started like any other weekday. The alarm went off and I was up and getting Danny’s food ready to go to school. He is 14 years old has pretty severe autism and goes to school for part of the summer. He is on a diet that helps his significant digestive issues as well as his “stimming.” Today it was gluten free pasta with tomato sauce and dehydrated vegetables and some mini chicken tacos. Danny won’t eat something green on his plate, so when he was very young, I took to dehydrating just about every vegetable under the sun to try to get something healthy into his body. Today, at 5’11” and 200 pounds, we still do that. He will take the sprinkle bottles and put them on himself. Little does he know that he is eating a significant amount of vegetables.
Upon waking, he swallowed the multitude of vitamins and drugs that help him get through the day. He does this easily now, although that was not always the case. I do not miss the days of putting the concoction of vitamins in his baby bottle, taking a syringe and squirting them into his body or the infamous shot glasses of mixture he would swallow begrudgingly. At the age of 9 he started swallowing pills, which was a huge feat in our house. Now he wants to take 7 or 8 at a time, and the amount of gratitude I have for that is not explainable.
He got on the bus happily and I took off upstairs for a shower so that I could go to work. Working full time is not easy with a child like Danny. Every time the phone rings, your heart skips a bit worried that there may be issue that has occurred and you may have to bolt out the door. I am grateful that I have people I am surrounded by that understand.
I took a pretty long shower, got dressed, hopped in the car and headed out to work. As I usually do, I stopped to get a coffee before work and as I walked into the gas station to get my coffee there were two sets of Dad’s with their 13 or 14 year old sons. One of the boys was talking to his Dad about being so excited about going to work with him and helping him out. That is when it happened. BOOM! Like a slap in the face. It is a sight that was so simple, yet, so hurtful at the same time. My husband is not able to do that. Nor will he probably ever be able to. I should know that by now, after all, Danny is 14 years old. I know what he is. I love him for who he is, but there it was; a knife in my heart and tears welling up in my eyes.
Why that instance? It is never when you expect it. No, you keep things all neat and work hard to make sure that things go right for your child with something people have deemed as autism. A word that I have really grappled with for some time. A word that is only the tip of the iceberg for someone like Danny. His medical issues out number the “autism” issues, so why not choose another word. Today I choose to keep on using that word, but really consider taking it out of my vocabulary many days.
Why today? Could it be that I watched and listened to “The Life That Chosen Me” on Facebook while getting Danny’s food ready and the words ring in my ears?
Could it be that I am going to be sending my son to a sleep away camp next week and need to make sure that I can communicate all of his wants and needs to a counselor so that there is not a behavior and he does not get kicked out; or the thought of making the list of foods that I need to prepare for the whole week so that he does not get sick and have digestive and sleep issues while at camp?
Is it that he is now taller, heavier and MUCH stronger than me and some situations just seem like they are so much work to overcome that it seems like I would be better off just hiding in my house with him until the worst part of puberty passes (if it passes)?
I, like any other mother just want Danny to be happy and grow up and be a productive part of some community. If there was some job that remotes could be tested or a way for him to show his methodology for maneuvering around YouTube to find his favorite movies without typing a thing to make it more efficient, sign him up.
Life moves on, and so do we, but there are those unexpected “zings” that sting so badly.
Rosemarie Dubrowsky - mother to 14 year old Daniel, serves on the Board of the National Autism Association and POAC (Parents of Autistic Children).