Category Archives: Just Ethan

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.

14 Years

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.

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Colors

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.

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