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?
It’s very rare that the internet lets me down. So, when I searched for family blogs about adults with DS and came up very short, it reminded me of my desire to document the experience of life-sharing with my guy. I did find Nick Special Needs and have been reading through Teresa’s site. So. Much. In. Common.
And then I realized that was exactly what I was looking for. Someone in my boat. A shared experience. A mirror. I also realized, if I don’t write, maybe I am letting someone down too.
So, I’m back. I am here.
I often do not realize the dynamics that make my family differnt from some, because it’s all I know. Sometimes, I am very acutely aware that co-living with an adult with a significant developmental disability is a very different experince from many other situations.
And just like family life, this blog could get messy. I don’t know where that blurry line falls about telling my stories, and Ethan’s stories and who and what might get mixed up in the middle. If I don’t say enough, or paint the picture in just the right light, you may not see or hear exactly what I am trying to covey. If I sugar-coat or gloss over the difficult and ugly bits (wait, you knew we had them, right?) I also don’t serve my purpose of putting this out there so that someone else feels less alone.
Right now, I’ve had to retreat to the basement with my laptop, because Ethan is here and he is watching Ninjago on his iPad VERY LOUDLY. He has mild, uncorrected hearing loss and listens to everything VERY LOUDLY. He won’t put in his earbuds because he recently had an ear infection. There is no point in trying to negotiate. Not now. Not over this. For now, I will dream of a giant house with a tricked-out basement that he would love 🙂 Or that I would love.
I am back to discuss what Living With A Happy Man is like, which is interesting and funny and hard, loud and unpredictable. If you ask Ethan what living with me is like he’d say ‘Mom is evil’. ‘
Evil’ is pronounced ‘eeeeeeevil’.
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
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