Category Archives: Transition to Adult Life

Camp PALS – An Ethan-free Week

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!

When I watch the videos, I see Ethan in a way that I NEVER get to see him – without us.

No parents. Not even the siblings who occasionally stand in with the carefully crafted direction and assistance we often provide.

Camp PALS does not look like the ‘staff and client’ relationship that we are becoming acquainted with in the adult system. Most of the people who volunteer with PALS are practically the same age as him. The word ‘buddy’ and ‘pal’, ‘sister’ and ‘roommate’ dot the vernacular at Camp PALS. People talk about friendship and LOVE. Seriously, did you watch any of the videos?!

The closing ceremony that was held when we came to pick up our campers had it’s own palpable shape and feel – like a water balloon stretched too tightly and filled to the top with water. I felt like if I touched it too suddenly, the sides would burst and it’s contents would end up in a puddle on the floor.

One by one, campers, counselors and parents stood up in an attempt to convey what the week of camp meant to them. Gently, the balloon deflated as the tears shed by those attempting to speak rolled slowly down their cheeks and decompressed what many of us were feeling. We witnessed something special and practically sacred.

A single mom experienced the only week of her year in which she is not a full-time caretaker. To top that off, her daughter had the time of her life – at least for that year.

A young male counselor said he believes the week did more for him than it did for his camper. He was profoundly changed by a young man with Down syndrome and without pretense.

A mom spoke of being able to watch her daughter literally blossom before her eyes in the videos, participating in activities that she would not normally engage in without her beautiful and energetic Camp PALS cohort.

I didn’t speak at the closing ceremonies. I absorbed the sites, sounds and sentiments during a set of very unique circumstances, like a sponge that was plunked down in a puddle full of joy and gratitude, and all I could do was take it all in. Sure, I could have talked about how I enjoyed a MUCH quieter house the week Ethan was at camp, or about how I was grateful to be relieved of some of the care taking duties in my life. I am, in fact, very thankful.  But it is not what I am most appreciative of. I loved watching Ethan navigate life, activities and friendships out from under my watchful eye. I liked watching him be who he is without me – which is someone who tucks his t-shirt into his shorts, even when it is not the best look for him.

Camp PALS provides an opportunity for young adults with Down syndrome to carve a facet into their lives that parents simply cannot do for them – and we are used to doing a lot of things for them. I am not sure the counselors completely get the impossibility and impracticality of parents providing the friendship and fun that they are able to offer in the way of their youth and energy. Simply put …

Thanks for not being us and for spending your time and using your talents in such a profoundly life-changing way.

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 🙂 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

Limbo

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.

Continue reading Limbo

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.

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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.

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

Continue reading Timeline for 2016 Graduates