Parenting has no road map. We each parent the children we are given. This I understand. And I also know that everyone's lives has challenges. Some harder, some easier, but we each face challenges daily. Currently I feel like I am trying to parent 3 young adults, 2 of whom are considerably younger than their physical age, without direction or a map and I feel like I can't do it well enough. I can't move fast enough. I can't find the path we are supposed to travel and worse, no one else seems to know what road we are supposed to be on either.
Matthew was in a program for young adults with disabilities for almost 9 months. I dropped off Matthew- a kid who was healthy, proud of his appearance, and social with everyone- truly most saw him as the Mayor. While things were great to start things started to go downhill in February. Suddenly he had 4 teeth that needed root canals and he was putting on a significant amount of weight. Not the "freshman 15" so many gained, but more like 30 pounds which quickly grew to 40/50 pounds.
Matthew came home in May for Memorial Day and he was in a t-shirt and I thought I would throw up. Suddenly I saw that he had stretch marks disfiguring his entire body. Stretch marks that were never, ever going to go away. How did I miss it? I knew he had gained weight. I had called a meeting with the program earlier in the year to discuss my concerns How did I see him gaining weight and totally not notice that his body was forever changed and covered in stretch marks? Why did I miss it? Why didn't I help him?
Then we went to the dentist and he needed 2 more root canals. 2 more. We hadn't even gotten clearance to put crowns and posts on the first 4 teeth ( I had been fighting with the insurance company since February) and now he needed 2 more root canals. The dentist urged me to call the insurance company and to fight one more time as passionately as I could. She was clear that it was root canals or removal of SIX of his front teeth. Again I felt like I had been punched in the gut. I wanted to hide. Why hadn't I fought for him? Why did I not do this better? Why didn't I know? Two of his teeth were turning black on the sides and yet I missed it. I hadn't seen him as much because he was busy and in the time I hadn't seen him his teeth had started to turn black.
I desperately called the insurance company one more time and the senior representative shared that they were not going to ever approve the crowns and posts, the insurance company didnt see the value in this. The insurance company saw his teeth as rotting and "simply pulling SIX front teeth" was a "more cost effective option. How would my boy, the mayor, suddenly have no front teeth? How did the adults who were with him for hours at a time not notice that his teeth were rotting? Why did he not complain of pain? What kind of mom doesn't notice? In 9 months how was his body so destroyed in a program where he was supposed to be supported as he learned to gain independent living skills?
Unfortunately the staff in the program felt like they couldn't support Matthew's level of need in the program. What did he require that was so burdensome?
- reminders to brush his teeth- just simply verbal reminders
- reminders to limit juice intake at home. Sure, he might drink it when away from the program, but limiting juice intake at all would help him protect his teeth.
- encouragement to exercise- provide him options- he loves to be busy, and yet they wouldnt offer prompts like "do you want to call a friend to shoot hoops"
I also called for support to see what is a level of support in a program that i can expect. Today I got answers. Today I feel like I can't do it good enough, fast enough..........enough.
See the Care manager needs to write specific goals for Matthew and these goals guide the program to offer the level of support he needs. Sounds easy enough. Except the goals apparently need to be "specific" and the goals we wrote were too general.
Matthew has a goal of learning to be healthy. Seems simple enough.
What I learned today is that we would have needed to define healthy to hold anyone accountable for Matthew's current physical state of health. I didn't know this. No one taught me how to write these goals. No one taught me what I was looking for. No one taught me. Can't we all define healthy as showering daily, brushing teeth daily at least one, eating a healthy well balanced diet? Cant we define by contrast UNHEALTY as gaining so much weight in such a short period of time? As suddenly needing 6 root canals? As going from being active to so sedentary? Can't we all agree? Why is it that the parents have to hold this all on their shoulders? It is so heavy to carry this burden without instruction and guidance.
Another goal was Assist with Budgeting skills. Matthew spent so much money each week on food. From grocery shopping to restaurants to snacks at the gas station, he bought food weekly in such large amounts and it was so easy for staff at the program to track as they looked at the spending on his ATM card. However, there was no guidance on how to save. No putting money away for emergencies. No guidance. Nothing. The goal needed to say Matthew will be assisted with budgeting skills and taught to save $X each week in order for the program to be held accountable. Doesn't budgeting by virtue include learning to save? Doesn't budgeting mean that a grown up in the program is going to teach him to put off the short term desires for long term needs?Doesnt this goal imply that someone will be working to teach him these things as he gains independence?
No, again it was on me to ask the care manager to make the goal more specific so that the staff in the program would know without any questions what is meant by the goal. Except I didn't know. I didn't know that the goals weren't good enough and so this will continue to happen to other families and young adults.
One day I am going to die. That is simply the reality. If life goes in the natural order of things I will die before my boys. Who will care for them when I pass? Who will make sure that the "goals are specific enough?" Who will ensure that the boys bodies aren't further destroyed? Who will ensure that Matthew will stay busy and engaged and happy? Who will care for them when I die and who will make this easier on me so that I can enjoy watching them grow into the incredible young adults that they are?