Have you ever said bad things after calling an automated customer service line? Swearing, maybe? Throwing objects, maybe? It is like being in an M.C. Esher painting, isn’t it? Who knows if you’re going forward or back, up or down.
I felt like that after we found out about my son’s Down syndrome. In the Pit of Google, I found simultaneously too much and not enough information. Medical risks, inclusion, therapy, advocacy, there was so much, yet it felt like trying to use an automated customer service line. I’d go to one website, get bounced to another, and half a dozen clicks later, I’d somehow be in the same place I’d started, confused as ever. All the while, I could yell and I could cry, but nothing changed. Websites don’t have social skills.
Then there were things well beyond the factual aspects of raising a child with Down syndrome. Trying to understand those slippery parts of love and acceptance through the lens of Down syndrome was mystifying. During those first days, I felt like I was winding my way through endless permutations of ill-fitting choices.
Press 1 for healthy. Press 2 for sick. I’m sorry, that option is unavailable, please press # to return to the main menu. Press 3 for despair. Press 4 for unicorn farts. Press 5 to access religious explanations. Press 6 for Holland and tulips. I’m sorry, I don’t understand your selection. Please try again.
I was not getting very far. I craved the nuance of a real human being.
Then I had a bit of luck. I made connections, in person and online. Those first interactions were not easy but they were crucial. I found parents who were like me not only because they had children with Down syndrome, but because I could relate to them in a broader way. They spoke my language. I had a template in which to fit the reality of disability into my parenting experience. Living, breathing human beings held out their hands to me. People made time in their lives to see me, call me, message me.
In that first year I experienced a sense of community that took my breath away. Cards and care packages went across states and even across countries. Strangers became friends through advocacy and activism. Gains were celebrated by all, loss was felt by all.
I have watched countless other parents experience what I did. Yet, what about the ones who don’t find those right connections and support? What about those who did not have the luck to stumble across the right people, the right organizations?
One of our greatest hopes at the Down Syndrome Diagnosis Network (DSDN) is to take the variability out of the diagnosis equation. The disability community has created so much, but not all are able to find what they need. All parents should find reliable, current information. All parents should find real-life connections. All parents should find a community that helps foster inclusion and acceptance for their child.
DSDN’s support network has been growing by leaps and bounds. Our small support groups add a layer of intimacy and connection that is hard to find elsewhere. Our Rockin’ parent groups are also endlessly flexible. Some parents choose to observe, some are vocal. Some parents find each other locally, some remain online. Some parents find like-minded friendships, while some find themselves in unexpected pairings, all equally wonderful.
DSDN’s Rockin’ Family support groups have grown from 1 to 12, reaching 1,500 new families around the world. Our support groups are growing at a rate of 500-600 parents a year—equivalent to nearly 10% of children born with Down syndrome in the United States each year.
We have some big dreams. We are starting a DSDN Rockin’ Family Fund that will fuel our support activities for our member families. Your generous donation will help us bring to life activities like these:
- Welcome: A basket to our new families with helpful information and a message of congratulations, possibility, and encouragement.
- Support: Cards and care packages for children undergoing surgery or having extended NICU stays to remind parents they’re not alone.
- Commemorate: Bereavement gifts for parents who have lost a child with Down syndrome.
- Empower: Scholarships and stipends for parents to attend Down syndrome related classes, conferences, and events.
Here are some things from parents who have already been touched by DSDN’s support.
“I absolutely love my windchimes! Every time I hear the wind making that beautiful music, it not only reminds me of our sweet baby boy, it also reminds me of the Rockin’ moms group and that someone out there cares that we lost our precious little Jamie and how special he was.” ~Julie, mother of Jamie
“The care package received from my DSDN family was wonderful! It let me know that I wasn’t facing my baby’s challenges alone. The chocolate made me smile and helped me relax during a very difficult time.” ~Jennifer, mother to Bella
“I was 25 weeks pregnant and visiting Las Vegas for work when I went into labor. Four days later, my daughter Zoe was born, at 2 lb 2 oz. Having a baby in the NICU and being so far from home was harrowing. When I had received Zoe’s prenatal diagnosis of Trisomy 21, there were so many things I didn’t yet know. Like the sound of her giggle, or how much she loves to snuggle. Another huge thing I didn’t know was the tremendous love and support that comes from the Down Syndrome community. When I was struggling in Las Vegas, they were there for me. All of the cards and care packages from afar blew me away. The Rockin’ mom care package was so incredibly thoughtful, filled with things like healthy snacks, a Tide stick, dollar bills for vending machines… Clearly from moms who had been there and understood. Even more so, the heartfelt love and support that came with it blew me away. I’ll never forget it.” ~Jamie, mother to Zoe
“My care package was a lifeline. It meant the world to me. Suddenly I didn’t feel so lost. I was connected to a family, a community, a group of giving and caring people who were there for me when I needed them.” ~Jennifer, mother to Emilee
No faceless, monotone customer service line. Systems that deliver real, tangible, personal support.
We need your help.
- DONATE: Click here to donate. Any amount will help support a new family.
- REACH OUT: Help us create partnerships. If you know of an individual or company who may benefit from sponsoring the DSDN Rockin’ Family Fund, get in touch.
- SPREAD THE WORD: Share this post, along with your own words. If you have had good experiences within the community, consider sharing them as paying it forward. If you have had poor experiences, consider sharing them as an act of education. Feel free to comment below—you never know who you will reach. #ShareTheLove
I’ll never forget those first couple days. I’d already started thinking that LP had Down syndrome but I hadn’t managed to utter the words. I thought, maybe, I’ll click my heels, wish really hard, and I’d be back from this alternate universe that seemed to be pulling me in. During the day, I managed to almost convince myself that I was, indeed, back in my sepia toned original life. Still had the same husband. Same kids. Baby, yup, same one I’d had a few days before I’d ever had the words “Down syndrome” enter my brain.
At night, things were different. In the dark, I’d hunch over my phone and follow whatever current my stream of consciousness took me. Try as I might, I just could not get a handle on what this life could be. I knew the dictionary definition of “developmental delay” or “low tone” but I simply could not grasp what that would look like. What would our lives be like?
This year for World Down Syndrome Day, I’m participating in a great project called A Day in the Life with Down Syndrome. I also asked the Taters what they thought about living with their brother. Sparrow, of course was unable to say much despite that I know she has many thoughts and feelings on the topic. I’ve translated for you what I think she would say. I may or may not have taken some liberties there.
I hope that, through these pictures and my children’s words, people will see how Down syndrome in our lives just exists. We talk about disability in our house very often. Not in a holy-moly-we-have-a-disabled-child-now-what kind of way. Rather, as just a part of us. Just like we talk about race, gender, class, and other groups that apply to our lives.
Yes, Down syndrome and disability are real forces in our lives, I cannot and would not deny that. But it isn’t that alternate universe that I thought it was. It is this universe. This universe that you and I, reader, share. Turns out that no heel clicking or wishing for home would have mattered, because I was already home, exactly where I was supposed to be.
My pictures aren’t limited to a single day, but since I’m unable to sustain any kind of project for an entire day (I blame the kids), you’ll have to accept my piecemeal offerings and trust that I’m showing what is typical for our day to day lives. The Taters’ reflections are at the end, enjoy.
OUR LIFE IN PICTURES…
LP’s morning starts off on the potty, then tooth brushing, getting dressed (no I never get frustrated or lose my temper at this stage, never), all pretty humdrum little kiddo stuff. First thing in the morning, LP is usually looking for Sparrow, he loves him some baby sister time. He might not always get the whole “gentle” thing, but he gets points for effort.
When Sparrow was born, LP was still really on the fence about learning ASL. He had a handful of signs, but it seemed like it took forever for them to “stick” and become permanent in his mind. The sign for “baby” however, he got lickety split. It was also the first sign he generalized to other babies and even cartoon pictures. Ever since, he’s been all about signing. Like I said, he loves babies.
Three days a week, LP goes to something called the “Infant Development Program” at a preschool. It has that fancy title because it is funded through our Early Intervention services, but I refer to it as simply LP’s preschool, because for all intents and purposes, that is what it is. They have circle time, play with the rest of the preschool classes (made up of children with and without disabilities), eat snack, go for walks, ya know. Preschool stuff.
Twice a month, a speech therapist comes to our house. This is the only therapy we do. If you know anything about Down syndrome and therapy, you’ll know that twice a month therapy is very low on the therapy scale. This has been a very conscious choice on my part; I feel very strongly that there is a balance between this kind of push for developmental progress (I am actually not sold on the idea that therapy always changes children’s developmental timelines, but that is another post) and the happiness of the child and his family. Our balance lies somewhere in the “minimal therapy” zone.
They play, read, sing. I think from LP’s perspective, our speech therapist is a lady who knows a lot of ASL and comes with a big bag of awesome toys. From my perspective, she’s a resource to talk to about his speech development.
There are forts. There are fights. There are uncontrollable giggle sessions.
Lately, there is A LOT of Slippery Fish being sung in our house. Sometimes I fall asleep thinking, “slippery fish, slippery fish, gulp, gulp, gulp…”
On the weekends, we play, we do projects, we veg out.
There are fun times with friends. Really, really, cute friends.
And days at the park.
LP shares a room with his sisters right now. We have family story time every night, then lights out. I know, you are just dying with jealousy at our exotic life, aren’t you?
WHAT DO THE TATERS SAY ABOUT THEIR BROTHER?
Mouse (6 1/2 years old):
I like playing with my brother, even though he destructos our games. Sometimes it is frustrating because he doesn’t always get our games. The thing I like most about him is that he is silly when he destructos. That’s funny because what I don’t like about him is also what I like about him. He gives really cozy hugs.
Chipmunk (4 years old):
I like showing my brother how to do stuff. When I show him, he does it back. It is hard to catch him when he runs away. He is like Rarity [from My Little Pony], except not, because Rarity can find special stuff but my brother can hide special stuff from other people.
Sparrow (4 months old):
Yes, that one, hm, what can I say. I think he’s suspicious. He throws toys at me and Mom is all brainwashed, she thinks he’s trying to “share” with me. And then there’s the thing where he’ll come over and start out holding my hand all gently, then that turns into a tap, tap, bang, bang, BAM! That sucks. But you know what is the worst, most suspicious part? Despite this constant threat of violence, I still smile at him every time he comes over, my face just does that and I can’t control it, I think I’ve also been brainwashed! I guess it is because it pleases me so much when he sings Slippery Fish to me, that stuff is fuuuunny. I pooped and need some more milk. Anyone? Hello?
And there you go, life in the KimchiLatkes household! xo
DSDN is partnering with my friend Meriah from A Little Moxie to create a year long project called A Day in the Life with Down Syndrome. If you have Down syndrome, or know someone with it, I hope you’ll consider participating. The website will continue to be available for submissions past World Down Syndrome Day.
A while back, the National Down Syndrome Society (NDSS) contacted me and offered me a scholarship to attend their legislative advocacy conference. Never one to scoff at a chance to
take a free trip do good, I immediately said yes. Actually, the offer resulted in a bit of hand wringing on my part, because try as I might, I couldn’t figure out why they’d asked me. It seems like there are so many other amazing advocates out there, I felt a bit like a fraud. All I do is write on this blog, after all. As much as I eschew the idea that people have to have “expertise” to be advocates, I have a hard time applying that philosophy to myself. But that’s for another post.
I woke up at an ungodly hour this morning, scooped up LP while still in his pajamas, and left sunny California for Washington D.C. A few items and musings of note from our travel day…
- When you travel alone with a baby, people assume that you are a first time parent. I’m very pleased to tell you that I now know to start rice cereal for babies who don’t sleep, and that I shouldn’t be afraid to put LP in daycare. I will also be sure to cherish every moment I have with him before I start having more kids. Wink, wink.
- I have now taken a shower, two days in a row. And no one was opening the curtain to tell me about a fight, nor was there a baby screaming over the monitor. *cue Handel’s Messiah* On a related note, is it possible for your ears to go through noise withdrawal? Since being away from Mouse and Chipmunk for the whole day, I swear my ears are hearing phantom sister fights and breaking noises. It is like my ear drums are stressed out from sudden disuse.
- During dinner tonight in the hotel restaurant, our server was particularly enamored with LP. Not in the fake, I’m-pretending-too-hard kind of way, mind you. She really liked him. I saw her peeking at him from the kitchen and telling her fellow server how much she liked him. And if that didn’t tickle my heart enough… She asked me how old he was and if he is walking yet, but before I could feel defensive, she told me about her nephew who walked at 2.5 years and talked at 3 years old. She didn’t say it in a way that was sad or awkward, just sharing. We chuckled and both agreed that some people get too caught up in the numbers game. And I loved that.
- I’ve been thinking about online relationships today. I have a number of mama friends I’m going to meet for the first time in person at this conference. I am beyond excited, as these moms have been there for me, shaped me, and humbled me over the past year in very profound ways. Plus, I really like them, they are nifty people. I’ve been wondering—how much can one know someone from a purely online relationship? I’ve got several, and I sure as heck feel like I know them pretty well. How will things change after meeting in person? Will they change at all? Perhaps the topic of a future post…
- Lastly, hotel beds. They rock. There are no Lego pieces tangled up in the sheets. Your pillows haven’t been stolen to make a fort. There are no piles of stuffed animals that are supposed to be zoo residents (your bed is the zoo pen, duh). Best of all, it is mine. All. Mine. Bwahahaha!
So that’s what we did today. We have officially begun LP’s first trip to Capitol Hill. Hopefully the first of many times he will put on his advocacy shoes. Or booties. Or socks, because I forgot his booties. Bad mommy.