Contact Daniel

Thursday, October 31, 2019

Bringing true awareness to Down syndrome, as only I can


Making you aware of me
Every October is Down syndrome awareness month and, every year, amazing articles are published by parents or others who have a loved one with DS. They detail the challenges, the joys, the milestones, the first time they heard the diagnosis and other aspects of life with Trisomy 21 — all inspirational and worth reading. I recommend searching the Internet to find a few of these moving stories.

We all (especially my parents!) love reading the success stories and the warm and encouraging testimonials of those who have overcome obstacles and achieved amazing feats. I, however, am going to give you a different glimpse of life with T21 and how I personally provided quite a “keen” awareness of Down syndrome this month:

Oct. 1. We are going into a restaurant? Nope, not me. No way! After my parents dragged me in anyway, I showed them… I sat under the table for a half hour. Hey, at least I didn’t scream. I came up for air and ate some food in silence. I welcomed the part when we finally left and I quickly returned to my cheerful self, like nothing bad ever happened. 

Oct. 2 The beach. I am at my calmest when near an ocean or sea. I love being pummeled by the waves and can stand there, up to my knees, for a good hour after everyone else is bored and wants to retreat to the blanket. When I’m done with the waves, I sit in the sand and bury my hands in deep. And then I inevitably take a few bites. There’s nothing like the taste and grit of sand in my mouth!

Oct. 4 My parents dragged me and my siblings to the mall. Big mistake. As soon as we entered I noted the sheer depth and enormity of the building, and I dropped to the ground in full dead-weight mode. A mall is a layered form of torture: a huge building comprised of many mini buildings inside. Way too much stimulation happening here. But this is where protesting works in my favor — dad offers to carry me on his shoulders. This has worked in several cities around the world. While the rest of the family is enjoying touring a city by foot and seeing new sites, from the Coliseum to the Acropolis to Red Square, I’m usually overwhelmed and melting down and I refuse to walk. The only option to keep me moving is to carry me. Then I’m actually happy as a lark. I am 9. 

I'm a baby-pro! Here I am whispering to my latest cousin,
Yasmeen, all the secrets of the Baby Code. (See Oct. 14)

Oct. 5 Because I threw and lost my very expensive glasses last month, my parents took me to an eyeglass shop to get a new pair. Luckily we were already armed with a painstakingly gotten prescription so all I had to do was try on frames. Simple right? Au contraire. Do not let anything touch my face. I fell to the floor — in the middle of the store — in protest. Again, dead-weight mode. My mother wrenched her back trying to hoist me to my feet. Finally my father came to the rescue and, with both of them cajoling (and holding my arms down) I agreed to try on some frames — for one second each. We aren’t sure if they looked good but we quickly decided on two pairs anyway (you always need a backup). I may have also screamed intelligibly a few times. I don’t remember but my mother said everyone acted as if they never heard a 9 year old scream before, while pretending they weren’t listening.  

Oct. 7 I was overcome with joy when my cousins arrived for a visit. So overwhelmed was I that I ran immediately across the street to greet them, without a care in the world. My mother says I’m lucky I’m still in this world and that no car was passing by at that exact moment. 

Oct. 9 Another restaurant??? Abject panic. This time I couldn’t sit under the table, but I stood in a far empty corner of the restaurant for a good 15 minutes. We call this progress compared to Oct. 1. And I really enjoyed the ravioli. @Piccolos #bestravioliintheworld

Oct. 10 My parents told me we were heading in a certain direction — then there was a lot of intelligible chatter as they spoke quickly and processed some new bit of information at lightning speed — and they changed direction. Sorry, no. I do not switch lanes. I went running for the door in the direction we were originally headed. I had to be dragged back moaning and crying. 

Oct. 12 Horseback riding. It is where I belong! I haven't ridden for almost a year but I haven't lost my mojo, in fact I got better at trotting and commanding my steed to stop and go. @HorseAbility

Oct. 13 Thanks to the latest Amazon delivery, I now have a compression vest that keeps me snug and less sensory seeking. My parents bought it in order to secure my chest bone which is on an express train growing outwards after my last open heart surgery 10 months ago. But a happy surprise side effect of this vest has been a slight calming of my sensory needs.

Oct. 14 We have a new baby cousin and I had the distinct honor of being the first of the cousins to hold her. I am her oldest cousin on this side of the family and I inwardly vowed to mentor her in the way of babies. I was extremely gentle, but occasionally overcome with emotion and couldn't help squeezing her, patting her soft head and kissing her cute face). 

Oct. 15 My parents returned to the oppressive place they call the mall — and this time, they left me with my grandparents. They did, however, take my brother and sister. Seems they learned their lesson. But if they didn’t have those babysitters, they would’ve had to choose between certain public meltdown or staying home.

Oct. 17 At the airport on the way home. Despite being a very public place, swarming with people, delays, lines and start-and-stop movements, my parents had no choice but to take me since we were heading back home. They are traumatized from previous meltdowns, accidents and even an in-flight manifestation of full-blown pneumonia which resulted in a six-night hospital stay after landing. But amazingly this trip, which included two long flights and several delays, went smoothly. Yay! We will consider traveling again!
We still fit as carry on. Whew!
Oct. 20 We are in the midst of overcoming jet lag and my mother has begun to panic: It’s been a month and I’ve refused to do any homework, so now it’s time. To humor her I actually took a pencil and played connect the dots. She was overly impressed and hopes this behavior will continue. Ha ha. 

Oct. 22 First day back to school after the holidays. To flick my proverbial middle finger at the fact that I hadn’t had a framework of school or therapy for over a month, I ran away from my classroom several times. And just for good measure, I threw my new glasses. Here’s to back to school!

Oct. 22 First day back to school after the holidays, and for a healthy dose of positive behavior, I used pictures and a few words to tell my class that I went to Moscow and New York during the break. I pointed out Red Square and other sites, uncommon for most children let alone those of us prone to freaking out in new places.  

Oct. 24 Our long awaited visit with the endocrinologist has finally arrived. My mother doesn’t even remember why she made the appointment since it was a five-month wait. According to my measurements, I’m barely visible on the DS growth chart and not even on the same planet as the “regular kid” growth chart. But doctor declares that despite my shocking shortfall (no pun intended) all is well and no one needs to care! Doctors are not mommy's favorite.

Oct. 27 Daylight saving has come to an end and most people are grateful for that extra hour they had to sleep that day. I had an extra hour to play and wreak havoc around our home before I woke up everyone else. I love to maximize that extra hour we get once a year.  

Oct. 28 On the bus coming home from my after-school program, another kid (who also has “special needs”) decided to lose it for a little while. He punched the chaperon and pulled another kid’s hair all the while screaming and shouting. I freaked out. That was really scary and so I peed in my pants, because that’s what I do when I panic. I got off the bus crying and took awhile to calm down. These special needs kids are so weird.

Despite the labels, I cannot be put in a box.
Or on a chart!
Oct. 29 My mouth needs a lot of sensory input. But most doctors and therapists can’t be bothered to diagnose past “Down syndrome.” Why bother with “trivial” issues such as “sensory processing disorder” when you’ve got an extra chromosome raging in every cell of your body? Hence, I do self therapy. In this case, I decided to chew on my new glasses. I bent the frame beyond repair and scratched the lens with my teeth. 

Oct. 30 Today I lost my jacket and my water bottle at school. Being mostly nonverbal I can’t tell anyone where I may have left them. But those are small losses compared to glasses, right? I like to give my parents the opportunity to constantly recalibrate their perspective in life. I'm good like that.

Oct. 31 Daddy was asleep still in bed so I pulled the covers off him and said, “Good morning!” Considering I’m nearly nonverbal, this simple greeting was like a happy jolt of coffee to get him out of bed smiling. All in all, I'd say October had been a great month!

This is the type of Down syndrome awareness that my family, teachers, therapists and my ever-patient PA (aka, my shadow at school) experience on a daily basis, year round. It is a 365-day cycle of battling, overcoming, rejoicing and picking up for the next battle. 

So thank goodness for October when all the uplifting stories are published, giving us hope that "this too shall pass" and that success awaits us around every corner!

2 comments:

  1. I truly adore Daniel. And the rest if the crew too xx

    ReplyDelete
  2. Our sons have Fetal Alcohol Syndrome (FAS), and while it and Downs are not the same, the behaviors and consequent parental emotional whiplash are often similar. In other words, I relate! You are not alone.

    ReplyDelete