Recently, I took Ethan and Sean to an event that I thought they would both like. And they did. Mostly. Then Ethan decided that he needed a Philly Pretzel and then Sean followed suit and then I realized that yet again, I was ‘under-cashed’ for such an event. Dennis gives me grief for not carrying what he deems ‘appropriate amounts of cash’ – which is NOT the $3-6 I often have.
I was attempting to convince both of them that they didn’t need pretzels, but they were admantly arguing the point when a man behind me tapped me on the shoulder and attempted to hand me a five dollar bill.
‘Let me get it’, he said.
We have been the recipients of kindesses like this in public before. On occassion we have reached a cash register to find out that someone has paid our bill, or Ethan has been handed a cool piece of sports memorobilia at an event. Recently it happened twice in the same night – kind of restores your faith in the human race, doesn’t it?
Although we always recognize these acts for what they are – random acts of kindness, it is sometimes hard to be a gracious recipient. I felt terribly uncomforable that because I couldn’t remember to stop and get cash, someone else felt the need to provide it to my demanding child.
I sometimes wonder what a person might be thinking when they offer such a gift. I wonder if they think money is tight for us, or they remember a time they were in a similar situation and just caught off guard.
This time I didn’t wonder. I looked at the gentlemen’s shirt and then to the stroller he was pushing. I gratefully said, “Thank you so much. You’ve just made this much easier for me.”
He said, “You’re welcome and I’m glad.”
His shirt said ‘Proud Parent of a Child with DS’ and his towheaded little daughter lay peacefully (unlike mine) in the stoller napping with the beautiful, little features of Down syndrome. You do know I think babies with DS are cuter than their typical counterparts, right?
When Ethan was a newborn, I recall being in the mall with him in a stroller. I passed a man with Down syndrome in an outfit I deemed questionable. He had on a Sesame Street graphic tee and his pants didn’t match. I vividly remember my thoughts of how I would ensure that Ethan looked pulled together in public and I wondered why ‘whoever was in charge of that guy’ didn’t do a better job of helping him look better in public.
The other night, Ethan left our house in this. That jacket is ‘pleather’. He refuses to unbutton the top button of any shirt. Ever. And why he is wearing a polo is beyond me. The glasses are 3D from his trip to see Black Panther and I really wanted him to change. Like a lot. But it didn’t happen.
Sometimes he wears a perfectly good outfit and then tops it off with authentic leather, fingerless biker gloves he bought for himself in New Hope. I knew, even when he was making the purchase, that those gloves held the potential to be a big problem. For me.
A cowboy hat and a tie-dyed t-shirt are also not out of the question and if you want to be able to see Mt. Rushmore and not stand in the parking lot and fight with him until he wins anyway, you should just mosey along and go with Ethan’s fashion protocol.
Accessory of the day: Selfie Stick.
Ethan often reminds me that he is a man and will wear what he wants. I guess I didn’t realize that about the guy in the mall that day.
Ethan turned out to be ‘the person in charge’ and he’s not taking fashion suggestions.
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.
Continue reading 30 Minutes of Happiness
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!
Continue reading Camp PALS – An Ethan-free Week
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.
Continue reading Dear 2017 Graduates – The Special Education Edition
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!
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
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
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?
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