Category Archives: Adult Life

30 Minutes of Happiness

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.

Ethan’s farewell to me was proceeded by him going to put his things away, greeting friends and ignoring me. As I chatted with Sandy, the woman who runs the program, I watched as he relaxed into a chair and sat calmly deciding what to do. He looked for paper and pens and his earbuds. He exchanged some words with the young man next to him who smiled broadly and warmly. He told the woman at the desk that he would not be going on the swimming outing of the day, but instead would like to deliver Meals on Wheels.

Excellent.

The vibe in the room was calm and pleasant, except for a girl named Jess who was agitated. Sandy mentioned to her that all of the tables in the adjacent program room could use wiping and that Jess knew exactly where the cleaning products were.  Although her answer sounded combative and disagreeable, I could tell that the answer soothed her and gave purpose to her excessive energy. Off she went to clean and scrub her way to a happier disposition – Jess, I feel ya, sister.

There is a good number of young men & women with Down syndrome in Ethan’s day program. Do you know they are my favorite? They always have been and probably always will be. A friend of Ethan’s, who is gregarious and flamboyant, wearing mardi gras beads and a huge, plastic cross necklace came over and hugged me around the neck. He asked me if I knew that he loved Sandy. I professed my love for her as well. He said she was like his second mom, but I happen to know that his mom recently passed away. I was thinking that I am glad Sandy chooses to spend her days doing what she does – running the day program – or being ‘the mom’.

Both are very noble.

As Sandy and I discussed the difficulties in navigating benefits and programming through the adult developmental disabilities programs of New Jersey, new arrivals continued to stream through the doors. This time, Dennis left his seat to open the door for everyone. He is the most pleasant guy. When I met Dennis we laughed for a long time over the fact that my husband’s name is Dennis and his mom’s name is Janet. His pleasure at this factoid was ridiculously contagious – so we laughed for way too long and it felt way too good.

In the room, everyone was engaged in something they wanted to be doing. The Wii was on and a boxing match was carrying on. One young lady announced that she needed to go to the art room – immediately. Someone was reading, somebody drawing, and everyone was chatting. That is my favorite. I loved seeing everyone engage with each other waiting to head out on whatever missions they had in store for the day. The vibe in the room was ‘happy togetherness’ and Ethan could use some of that. Hell, who couldn’t?

Eventually, I had to leave, because as much as I like it there, it’s Ethan’s place and I can only visit.

Trial Work Experience, Oh My!

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!

What’s Working?

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?”

Ethan!

That’s right. He is not working.

Continue reading What’s Working?

Transportation Woes

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

The Graduation Party

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

Limbo

Nope. Not the party game. It’s more like the metophoric ‘we-are-not-in-hell-but-haven’t-made-it-to-heaven-either’.

coloring

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

Precipice

Friday is Graduation Day.

Friday, we veer off of a familiar path that we have come to be able to walk in the dark and in our sleep. One foot in front of the other ~ it has been safe, predictable and controlled. It supported us and Ethan in a way that made our lives hum.

14 years.

That is one well-worn road.

We have puzzle pieces to put together, but we don’t have the picture on the front of the box to work from. We need to invent, create and construct whatever it is that is going to build the minutes into hours, and hours into days, and days into meaning and substance.

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“Here goes…..
better throw my hand in………
wish me happy landing…….
all I gotta do is…………
JUMP!!!!”  ~ Aladdin

Picking a Support Coordination Agency

I was given this brochure back in October. I actually followed the suggestions. I wholeheartedly advise diligence with this task.

I also asked every, single person who already had a SCA who they were using and if they were happy with the service being provided. I asked every agency and program that I had contact with that serves people with developmental/intellectual disabilities who they felt was doing a great job. I asked them which agencies they loved, and if they would divulge, who they really did not like. This all went in The Notebook.

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Timeline for 2016 Graduates

I opened my email a few days ago from Ethan’s school. It was a modified date for the last day of school.

THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL

Continue reading Timeline for 2016 Graduates