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.
Ethan’s transition into ‘adult life’ has been nothing like I anticipated. It is has been so much harder, slower and fraught with roadblocks than I could have foreseen. Thank God. I am glad I didn’t know – similar to how I am glad I did not know that he would be born with an extra chromosome.
I have noticed that my frustration and disappointment is not well-met by people asking how Ethan is doing. They want to know that he is busy & happy. They want to hear that there are lots of ‘programs’ for adults with disabilities. They want to hear ‘He’s good, thanks!’ I have not complied with their desires. I’ve bitched, moaned, and complained. I have been honest. People haven’t enjoyed that. I can tell by the looks of disgust on their faces. Most people tell me that I must be ‘missing something’. Unlike them, I am not comforted by this thought, because I know that I am not.
Ethan is at Camp PALS as we speak. This has been a labor of love ever since I set my alarm for midnight to register for a highly coveted spot at camp. Camp PALS looked too good to be true.
Turns out it is too good ~ and it is true!!
The schedule is jam-packed with fun and frivolity. The pictures showing up on the Facebook Page are pure magic. Ethan has checked in several times via his brand new iPhone. Facetime and phone calls and texts assure him that we are all still here, but we are not coming to get him. It’s hard.
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.
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.
I simply couldn’t hold it together. I think I will go down in Midland history as ‘The Mom Who Cried The Most’.
“You will come to a place where the streets are not marked.
Some windows are lighted, but mostly they’re darked.
A place you could sprain both your elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?”
― Dr. Seuss, Oh, The Places You’ll Go!
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.
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.
better throw my hand in………
wish me happy landing…….
all I gotta do is…………
JUMP!!!!” ~ Aladdin
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.
Dennis and I visited Midland for the first time on the day of the prom many years ago. We heard the buzz in the hallways about eye shadow and dresses. It was hard to believe we would EVER have a kid going to the prom. I blinked, and….
Ethan LOVES to wear his suit. He loved his rented convertible Mustang. I loved seeing these young adults step out of limos, pose for pictures, pair up, smile and encourage their parents to leave. Go.
The parents who were told their child might never walk or talk. The parents who were told their children would never recognize their faces. The parents who decided that they couldn’t NOT be parents and were willing to parent children who others deemed ‘too difficult’. The parents who have endured years of people staring and pointing. The parents who in the dark of night wondered how any of this was ever going to be ok.
Those parents – told to leave – by those kids.
It rained all afternoon. It drizzled and it was gray. But as the time came to gather in the parking lot at the restaurant and have their moment in the proverbial sun, that was exactly what they got.
If securing competitive employment is going to be challenging to someone due to reasons including, but not limited to, being blind or deaf, having an intellectual impairment or have difficulty learning tasks necessary to maintain employment, a person may be eligible for the services offered by the Division of Vocational Rehabilitation Services.
‘Vocational rehabilitation services’ may include such things as job training and job sampling, education for specific employment situations and ongoing support in the form of job coaches and consultations. This is where DVRS comes in.
Our first contact with a representative with DVRS was at Ethan’s IEP meeting. A rep was contacted and invited by the social worker at Ethan’s school. You can request this or invite them yourself. I have found the office very responsive and helpful, so far.