I knew the clock was ticking on the amount of time we could continue to see the pediatrician. I have a complicated child and and my relationship with the pediatrician was close and we’ve had an excellent rapport. Because of our long history together, we could make decisions based on past experiences and trust was high. The thought of moving on was terrifying.
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.
I know I am going to be in trouble. You just don’t mess with Ethan’s things.
But since he was at camp, I figured the time was right to clean his room.
My preference would be purge, cull, organize and rearrange. But I have to settle for ‘clean’ unless I want a full-fledged ‘happy man’ meltdown. Cleaning around the level of hoarding Ethan does is tough for a neat freak like myself.
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.
It’s very rare that the internet lets me down. So, when I searched for family blogs about adults with DS and came up very short, it reminded me of my desire to document the experience of life-sharing with my guy. I did find Nick Special Needs and have been reading through Teresa’s site. So. Much. In. Common.
And then I realized that was exactly what I was looking for. Someone in my boat. A shared experience. A mirror. I also realized, if I don’t write, maybe I am letting someone down too.
So, I’m back. I am here.
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.