Category Archives: Adult Life

Someone Like Me

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 often do not realize the dynamics that make my family differnt from some, because it’s all I know. Sometimes, I am very acutely aware that co-living with an adult with a significant developmental disability is a very different experince from many other situations.

And just like family life, this blog could get messy. I don’t know where that blurry line falls about telling my stories, and Ethan’s stories and who and what might get mixed up in the middle. If I don’t say enough, or paint the picture in just the right light, you may not see orย  hear exactly what I am trying to covey. If I sugar-coat or gloss over the difficult and ugly bits (wait, you knew we had them, right?) I also don’t serve my purpose of putting this out there so that someone else feels less alone.

Right now, I’ve had to retreat to the basement with my laptop, because Ethan is here and he is watching Ninjago on his iPad VERY LOUDLY. He has mild, uncorrected hearing loss and listens to everything VERY LOUDLY. He won’t put in his earbuds because he recently had an ear infection. There is no point in trying to negotiate. Not now. Not over this. For now, I will dream of a giant house with a tricked-out basement that he would love ๐Ÿ™‚ Or that I would love.

I am back to discuss what Living With A Happy Man is like, which is interesting and funny and hard, loud and unpredictable. If you ask Ethan what living with me is like he’d say ‘Mom is evil’. ‘

Evil’ is pronounced ‘eeeeeeevil’.


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.ย  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?”


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 ๐Ÿ™‚ 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


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.


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

Continue reading Picking a Support Coordination Agency

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.


Continue reading Timeline for 2016 Graduates