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.

Dear 2017 Graduates – The Special Education Edition

If you have a child with significant special needs graduating in 2017, people will congratulate you and wish you luck. They will send cards. Your graduate will be encouraged with all manner of exciting and inspirational things headed their way, like ‘new chapters’ and ‘open doors’.

But I’m your friend and I’m here to tell you about the cliff.

You are inevitably walking towards the edge of a chasm. When they hand your son or daughter that leather-bound folder, you take the step to the spot where the earth below your feet ceases to exist. I promise – honesty is the best policy.

Whatever it is that you have been believing in and using as your guideposts no longer exist. The rules, the laws, the people, places and programs have all vanished. When you wake up post-graduation day, there’s a brand new map and you better learn to use a compass.

So, here is my best advice, which is worth about exactly what you are paying for it.

First, please remember that you are on your own.  No one is coming to save you. Whether you find that scary, liberating or shocking, it is true. If you don’t look for them, they are surely not looking for you. Don’t wait for someone to call you or set up a meeting, find a program, or offer you anything. The internet is your friend, your BFF, so put on your research cap and get to work.

Second, be flexible and prepared for sudden changes of direction. Be ready to rethink, replan, and regroup. Ethan’s exit IEP at school was productive and everyone seemed engaged and  knowledgeable about how things were going to work. We all had ideas and plans and none of them worked out the way I initially thought they would.  My strength is strength – like a brick wall or an an oak tree. So. Little. Give. My thoughts settle into ruts like fast moving streams and I have had very hard time changing direction – so we’ll work on that together, huh?

Next up – Read All Of The Things. I mean it. All of the laws and acronyms that applied  to your newly-minted adult child’s life for the last 18 years of your life have changed. There is a new sheriff in town and her name is The State of New Jersey. True to form, there are lots of complicated programs, documents and rules. If you don’t read and understand the programs, it is like playing a board game and depending on your opponent to play fairly or even know all of the rules themselves! Please, get to know the system you are working in. I have AN AWESOME SUPPORT COORDINATOR. She is smart, effective, and has tons of experience. Together, we still struggle to make certain things work.

Here is another imperative skill:

per·sist·ence [pərˈsistəns]

NOUN
  1. firm or obstinate continuance in a course of action in spite of difficulty or opposition

Be it. Know it. Tattoo it on your forehead. It took us 4 months of daily struggle to make Access Link work for Ethan. It took us 13 months to get any services from the Division of Vocational Rehabilitation.  It took several months to find and get into a day program. Damn it, Dr. Suess is always right.  But don’t give up and don’t give in and don’t take ‘no’ for an answer. Ever.

Talk, talk, talk to other parents! Find out what their kids are doing, what programs they go to, how they found work, transportation or a great personal trainer. I don’t hesitate to ask for names and phone numbers when I neighbor says that they know someone who has a daughter with a great job or a son who is participating in an exciting and innovative adult program. I shamelessly ask for information. I call and visit ANY program someone mentions, even in the most casual of circumstance.

I did not appreciate the question – “So what will Ethan do after graduation?” – as if we had all of these interesting and appealing options available for only our choosing! Although graduation came with it’s share of pride and triumph, it came with a hearty serving of doubt and fear.

So, off the cliff you go. You have me to thank when the free fall does not surprise you and catch you unaware. You will be able to keep your wits about you and you can even start planning mid-air. Use the above suggestions as a blueprint.

You can begin to build a net or a staircase or a bungee cord….

or wings.

Trial Work Experience, Oh My!

The services that the Division of Vocational Rehabilitation offers make so much sense. The goal is to mitigate factors that make competitive employment difficult for people with disabilities.  The idea of “Supported Employment” looks like it fits our situation, over here, like a glove. But it is not a glove, it’s cheese…and I am a mouse. I have run the gauntlet in search of my tasty prize – the walls of the labyrinth are made of red tape, long waits, inept agencies unprepared for their stated missions and misinformation. I wrote another post explaining the pitfalls of all this here.

But one sunny day, 13 months after first meeting with DVR, Ethan was offered a spot with an agency that could provide a legitimate Trial Work Experience during which someone would take him out into employment situations in the community to assess if he is eligible to be supported by DVR. Baby steps.

Continue reading Trial Work Experience, Oh My!

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.

Continue reading 14 Years

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.

Continue reading Colors

What’s Working?

Do you need to hear good news? I swear, I’ll try to wrap this up optimistically. Bear with me, won’t you?

First let’s talk about “What’s Not Working?”

Ethan!

That’s right. He is not working.

Continue reading What’s Working?

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

What’s Wrong?

Only just about everything.

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.

Continue reading What’s Wrong?

C-A-M-P

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.

People ask ‘How is camp?’

Continue reading C-A-M-P