Monthly Archives: July 2017

30 Minutes of Happiness

I drove Ethan to his day program one morning which meant I got to go in, which meant I got to stay for a little while, which meant my day started out way better than yours.

Ethan’s farewell to me was proceeded by him going to put his things away, greeting friends and ignoring me. As I chatted with Sandy, the woman who runs the program, I watched as he relaxed into a chair and sat calmly deciding what to do. He looked for paper and pens and his earbuds. He exchanged some words with the young man next to him who smiled broadly and warmly. He told the woman at the desk that he would not be going on the swimming outing of the day, but instead would like to deliver Meals on Wheels.

Excellent.

The vibe in the room was calm and pleasant, except for a girl named Jess who was agitated. Sandy mentioned to her that all of the tables in the adjacent program room could use wiping and that Jess knew exactly where the cleaning products were.  Although her answer sounded combative and disagreeable, I could tell that the answer soothed her and gave purpose to her excessive energy. Off she went to clean and scrub her way to a happier disposition – Jess, I feel ya, sister.

There is a good number of young men & women with Down syndrome in Ethan’s day program. Do you know they are my favorite? They always have been and probably always will be. A friend of Ethan’s, who is gregarious and flamboyant, wearing mardi gras beads and a huge, plastic cross necklace came over and hugged me around the neck. He asked me if I knew that he loved Sandy. I professed my love for her as well. He said she was like his second mom, but I happen to know that his mom recently passed away. I was thinking that I am glad Sandy chooses to spend her days doing what she does – running the day program – or being ‘the mom’.

Both are very noble.

As Sandy and I discussed the difficulties in navigating benefits and programming through the adult developmental disabilities programs of New Jersey, new arrivals continued to stream through the doors. This time, Dennis left his seat to open the door for everyone. He is the most pleasant guy. When I met Dennis we laughed for a long time over the fact that my husband’s name is Dennis and his mom’s name is Janet. His pleasure at this factoid was ridiculously contagious – so we laughed for way too long and it felt way too good.

In the room, everyone was engaged in something they wanted to be doing. The Wii was on and a boxing match was carrying on. One young lady announced that she needed to go to the art room – immediately. Someone was reading, somebody drawing, and everyone was chatting. That is my favorite. I loved seeing everyone engage with each other waiting to head out on whatever missions they had in store for the day. The vibe in the room was ‘happy togetherness’ and Ethan could use some of that. Hell, who couldn’t?

Eventually, I had to leave, because as much as I like it there, it’s Ethan’s place and I can only visit.

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.