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.
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.
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.
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.
If you have a child with developmental disabilities and/or medical, social, emotional, and educational issues, you will, no doubt, be well acquainted with papers. Hundreds of them. Stashed and stacked in several locations with the one you need right now, nowhere to be found.
After my first blog post, three people contacted me via text & phone regarding ‘the system’ and ‘the process’. These friends were not comfortable or ready to post details regarding people to question, who may not know as much as they let on, and warnings about agencies that do not function even closely to how their representatives maintain that they do. But they wanted to inform me.
We’ve been cruising on auto-pilot. Everything has been under control. I haven’t asked Dennis to come to an IEP meeting in years. This time it was different. This IEP meeting was the first in a long line of meetings that will punctuate Ethan’s last year of educational entitlement. Young adults with disabilities can attend public education through the age of 21. Ethan will turn 21 in June of this year.