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.
The other night, Ethan left our house in this. That jacket is ‘pleather’. He refuses to unbutton the top button of any shirt. Ever. And why he is wearing a polo is beyond me. The glasses are 3D from his trip to see Black Panther and I really wanted him to change. Like a lot. But it didn’t happen.
Sometimes he wears a perfectly good outfit and then tops it off with authentic leather, fingerless biker gloves he bought for himself in New Hope. I knew, even when he was making the purchase, that those gloves held the potential to be a big problem. For me.
A cowboy hat and a tie-dyed t-shirt are also not out of the question and if you want to be able to see Mt. Rushmore and not stand in the parking lot and fight with him until he wins anyway, you should just mosey along and go with Ethan’s fashion protocol.
Accessory of the day: Selfie Stick.
Ethan often reminds me that he is a man and will wear what he wants. I guess I didn’t realize that about the guy in the mall that day.
Ethan turned out to be ‘the person in charge’ and he’s not taking fashion suggestions.
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 or 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 🙂 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’.
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 planning and preparing that it takes to get Ethan to camp is extraordinary. Thank goodness Camp PALS is extraordinary.
If you have the opportunity to view some Camp PALS NJ 2017 videos, do it. Then watch them again, make a donation, and recruit some volunteers for them – because the cause is fantastic!
Continue reading Camp PALS – An Ethan-free Week
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.
Continue reading Dear 2017 Graduates – The Special Education Edition
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!
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.
Continue reading 14 Years
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.
Continue reading Colors
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