Yesterday, I had the opportunity to take Ethan to “New Jersey Transition to Adulthood Comprehensive Care” or NJTACC. Their websites states that they are:
an interdisciplinary team designed to assist teens and young adults with intellectual and developmental disabilities as they face the challenges associated with their transition to adult services and medical care.
It was music to my ears, but my cynical side kicked right in, telling me to reserve any hope I might have for after the appointment.
I am very pleased to inform you that I am hopeful!
Continue reading Help is on The Way
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.
Continue reading Adult Medical Care
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.
Continue reading I’m In Trouble
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.
Continue reading Someone Like Me
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.
Continue reading 30 Minutes of Happiness
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.
Continue reading Trial Work Experience, Oh My!
Do you need to hear good news? I swear, I’ll try to wrap this up optimistically. Bear with me, won’t you?
First let’s talk about “What’s Not Working?”
That’s right. He is not working.
Continue reading What’s Working?
Ethan will never drive a car. Ever again.
Occasionally, you might hear a story of a person with Down syndrome with a drivers license. I am happy for them and their parents, but I feel that when a story like that is publicized, it sends a message to parents and the general population that is faulty. I know that it is meant to be encouraging, but the way I work it out, it’s like telling the parents of a typical newborn, “You know, I heard that some of these kids become US Olympians”. I did the math. Similar results. Even if it is possible for a tiny handful of people, it is not a practical probability for most. If you add in all the other folks with intellectual disabilities and adults with autism, you have a whole lot of people who need rides to get to their destinations.
Continue reading Transportation Woes
There is no party like a “Midland” family party. Our kids excel at partying 🙂 They were happy to be together celebrating once again.
It took me only a few minutes to notice that most of the parents were wearing similar expressions as we glanced at one another. I was familiar with it – I see the same expression on my own face. ‘Deer-in-the-headlights’ sums it up. ‘Shell Shock’ works as well. We tried small talk. We tried meatier subjects. Someone suggested we take it outside.
Continue reading The Graduation Party
Nope. Not the party game. It’s more like the metophoric ‘we-are-not-in-hell-but-haven’t-made-it-to-heaven-either’.
After graduation, Ethan left the ‘educational entitlement’ segment of his life. The school district is no longer responsible to provide programming for him. He also has not turned 21 yet, which would place him into the ‘adult services’ component of his life. It’s soon, but not now.
Continue reading Limbo