The transition from pediatric medical care to adult care has been horrific for us. Ethan is a complicated person with a handful on ongoing medical issues. Explaining things all over again and attempting to build relationships with new providers has proved disappointing and exhausting.
Recently, I took Ethan and Sean to an event that I thought they would both like. And they did. Mostly. Then Ethan decided that he needed a Philly Pretzel and then Sean followed suit and then I realized that yet again, I was ‘under-cashed’ for such an event. Dennis gives me grief for not carrying what he deems ‘appropriate amounts of cash’ – which is NOT the $3-6 I often have.
I was attempting to convince both of them that they didn’t need pretzels, but they were admantly arguing the point when a man behind me tapped me on the shoulder and attempted to hand me a five dollar bill.
When Ethan was a newborn, I recall being in the mall with him in a stroller. I passed a man with Down syndrome in an outfit I deemed questionable. He had on a Sesame Street graphic tee and his pants didn’t match. I vividly remember my thoughts of how I would ensure that Ethan looked pulled together in public and I wondered why ‘whoever was in charge of that guy’ didn’t do a better job of helping him look better in public.
I drove Ethan to his day program one morning which meant I got to go in, which meant I got to stay for a little while, which meant my day started out way better than yours.
The planning and preparing that it takes to get Ethan to camp is extraordinary. Thank goodness Camp PALS is extraordinary.
If you have a child with significant special needs graduating in 2017, people will congratulate you and wish you luck. They will send cards. Your graduate will be encouraged with all manner of exciting and inspirational things headed their way, like ‘new chapters’ and ‘open doors’.
But I’m your friend and I’m here to tell you about the cliff.
The services that the Division of Vocational Rehabilitation offers make so much sense. The goal is to mitigate factors that make competitive employment difficult for people with disabilities. The idea of “Supported Employment” looks like it fits our situation, over here, like a glove. But it is not a glove, it’s cheese…and I am a mouse. I have run the gauntlet in search of my tasty prize – the walls of the labyrinth are made of red tape, long waits, inept agencies unprepared for their stated missions and misinformation. I wrote another post explaining the pitfalls of all this here.
But one sunny day, 13 months after first meeting with DVR, Ethan was offered a spot with an agency that could provide a legitimate Trial Work Experience during which someone would take him out into employment situations in the community to assess if he is eligible to be supported by DVR. Baby steps.
There is a 14 year age difference between Ethan and Sean and when I find myself watching them engage in some type of cooperative activity on a Friday night, as I sometimes do, I grab my camera and I marvel at the sight. The joy of this is NEVER lost on me. I always feel like I am watching something magical.
I once watched a man intensely watching Ethan, Gavin and Mikey closely at a church we used to attend. “So, they act just like brothers?” The only reason I was not too thrown off by the question was that Mikey was a rather new member of the family and I thought the question referenced Mikey’s status in foster care. “Oh yeah, they’re great, endless games and stuff – they are all really wonderful together.” Then he said, “I have a brother like that.” I knew exactly what ‘like that’ meant. It was Ethan. In just a few moments he explained that his brother, who was older than him was placed in residential care when they were young and he recounted how his playmate was removed from his home and his life. He assured me that his parents had to do that because it was ‘best for everyone’. Maybe it was. Maybe it really wasn’t.
I remember the first time I saw Ethan color in a coloring book. He was about 5 years old and had just taken his first pill of an ADHD medication about an hour prior. This is a whole story in its self and sometime I will tell it to you.
I distinctly remembering asking Dennis, “What is that? How do you give a kid a pill and he suddenly develops a hobby?!?! How can that happen? How can a drug facilitate that?!?!?” For several weeks, we called it his sit-down-and-color-pill. The difference was extraordinarily stark – like a flicked switch. Not only did he not color before that trial of medication, he didn’t sit. Or make eye contact. Or lots of other things. But here he was coloring.
Only just about everything.
Ethan’s transition into ‘adult life’ has been nothing like I anticipated. It is has been so much harder, slower and fraught with roadblocks than I could have foreseen. Thank God. I am glad I didn’t know – similar to how I am glad I did not know that he would be born with an extra chromosome.
I have noticed that my frustration and disappointment is not well-met by people asking how Ethan is doing. They want to know that he is busy & happy. They want to hear that there are lots of ‘programs’ for adults with disabilities. They want to hear ‘He’s good, thanks!’ I have not complied with their desires. I’ve bitched, moaned, and complained. I have been honest. People haven’t enjoyed that. I can tell by the looks of disgust on their faces. Most people tell me that I must be ‘missing something’. Unlike them, I am not comforted by this thought, because I know that I am not.