Category Archives: Transition to Adult Life

Help is on The Way

Adult Life, DDD, Department of Developmental Disabilities, Health Care, Planning for Adult Life, Transition to Adult Life, Uncategorized, , , , ,

Yesterday, I had the opportunity to take Ethan to “New Jersey Transition to Adulthood Comprehensive Care” or NJTACC. Their websites states that they are:

an interdisciplinary team designed to assist teens and young adults with intellectual and developmental disabilities as they face the challenges associated with their transition to adult services and medical care.

Specialty Care Plainsboro Front View

It was music to my ears, but my cynical side kicked right in, telling me to reserve any hope I might have for after the appointment.

I am very pleased to inform you that I am hopeful!

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Adult Medical Care

Adult Life, Health Care, Transition to Adult Life

I knew the clock was ticking on the amount of time we could continue to see the pediatrician. I have a complicated child and and my relationship with the pediatrician was close and we’ve had an excellent rapport. Because of our long history together, we could make decisions based on past experiences and trust was high. The thought of moving on was terrifying.

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Camp PALS – An Ethan-free Week

Just Ethan, Transition to Adult Life, Uncategorized,

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!

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Transportation Woes

Adult Life, Planning for Adult Life, Transition to Adult Life,

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.

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The Graduation Party

Adult Life, Planning for Adult Life, Transition, Transition to Adult Life

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.

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Limbo

Adult Life, Planning for Adult Life, Transition to Adult Life

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.

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Picking a Support Coordination Agency

Adult Life, Support Coordination Agency, Transition, Transition to Adult Life

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

Adult Life, Medicaid, Planning for Adult Life, Transition to Adult Life

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

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