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
The word. The r-word.
It is an ugly word. No one calls someone else by that word as a gesture of respect or affection, do they? There seem to be no shortage of arguments people use to defend the word’s use.
It isn’t personal.
No one means it like that anymore.
I’m talking about a thing, not your kid.
The world is too politically correct.
Don’t be the language police.
I want to suggest here, to the person who uses that word and any derivations of it, that it is personal, you do mean it like that, you are talking about my kid, it isn’t about being politically correct, and asking for respect is not an act of policing the English language.
What are we talking about, then? Here is where I think we get tripped up. I think we are getting fixated on a single poisoned branch of a tree, not realizing that cutting off that one branch will not work in the long run. I think we need to step back and look at what poison feeds that tree, really dig deep into what this word means.
I think the poison is that our culture is unreasonably obsessed with the idea of intelligence. In modern parlance, the word “retard” has become the antithesis of intelligent; it is a sign of all things intellectually broken.
Tell me, then, what the difference is between these phrases:
That’s so stupid
That’s so retarded.
Oh my gosh, I feel like a retard for not getting that!
Oh my gosh, I feel like an idiot for not getting that!
She’s so dumb.
She’s a retard.
Yes, the word “retard” gets in there, and it feels all that much more violent, denigrating, and ugly. That’s why I’ve written before that using the word is sort of like flying an “I make fun of intellectual disability” flag. On the other hand, are these phrases so different, even without the word? The attitude is the same, isn’t it? Every one of those statements has an intellectually elitist message.
We live in a world that believes lack of a certain type of intelligence is categorically bad. We decide to have a few laughs on the topic, and well, that is fine because stupid is bad, right? And if I, personally, should have a little slip of memory, confusion, or misunderstanding, then I get to laugh about that small moment when I looked stupid, but I really wasn’t. It is funny, because being smart is better, right? Why is that funny?
Curious, then, that we all seem to think that we, personally, fall within the limits of acceptable intelligence. We all seem so quick to decide who and what else, is stupid, but never ourselves. No, I’m not broken and stupid. It is that person, over there.
We must to change our attitude and kick this intellectual elitism to the curb, or else we are simply pruning a poisonous tree. It’ll keep growing and we will keep pruning. Look at what has happened to the word “special.” The term “special education” refers to education specific to the needs of some kids with disabilities. Yet, how many times have you heard someone say in a derogatory way, “Oh, that’s special.” That is no different than using the word retard.
The word “retard” is nourished by the intellectual elitism that pervades our thoughts, our language, our values. Until we starve it out, that tree will grow new words, new slurs, new ways of hurt.
I’m talking about inside the disability community and outside of it. I’m suggesting that we don’t put ourselves down as being stupid when we make mistakes or misunderstand things. We don’t call people dumb, idiotic, or stupid when we disagree or think their opinions uninformed. We don’t make a big show about how physical disability involves just the body, implying that the mind and intellect is the most important thing in life.
We don’t need to hold up our kids with intellectual disabilities and insist, but they ARE smart! The truth is, they might not be traditionally “smart”, and it shouldn’t matter one bit. By going along with the premise that some intangible idea of intelligence is so all-important, we are playing a rigged game.
To my fellow parents in the disability community, I wish we could stop playing the intellect game. Can’t we just walk away? Let’s be proud of our kids’ accomplishments without making intellect into the holy grail of achievement. To all of those who continue to use the word, to walk with that intellectually elitist attitude, please stop. You just look like a jerk, and I’m sure you’re not. (Well. Unless you are actually a jerk, and then there’s a bigger problem. Good luck.)
Truly. Let’s stop playing that game. We can rewrite the rules. Destroy that tree, plant a new one. We can nourish that new tree with true, deep-rooted, equality.
Let’s not just end the word, let’s starve it out, along with any chance of its revival.
Let’s end the elitist attitude. I don’t care what your IQ is, and I don’t care what my IQ is. I don’t care if you can’t understand what I can. I don’t care how fast or slow your mind processes information. I don’t care how much you can or can’t memorize. I don’t care how many big words you know, or whether you have no words at all. We all have strengths and weaknesses.
We are equals. Disabled, able-bodied, neurodivergent, neurotypical… equals.
WHAT YOU CAN DO
- Take the pledge to end the r-word.
- The next time you hear someone using that word, or denigrating intellectual disability, say something. Don’t let the poison spread.
- Go to the Spread The Word website and grab a badge here. Display it on your blog, use it as your social media profile pic, tape it on your forehead. Don’t use super glue though. Regular tape will do. You’ve been warned.
We’re back! LP saw his first snow, we went to Capitol Hill, and now a bunch of only vaguely related thoughts are pinging through the old noggin.
I’ve been cheating on my husband…
Yep. I’ve been online dating. Over the past year, I’ve gotten pretty intimate with oh, maybe 150 or so mommies from across the world. I’ve messaged with them in the middle of the night, we’ve watched our kids go from little baby blobs to cute little people with blossoming personalities. Many a night has my husband yawned and given up trying to talk to me because I’m busy with “The Ladies”. Latke always says “The Ladies” with a grand arm sweeping gesture and a sarcastic face.
It is not just mommies. I’m resisting the urge to name everyone I met, lest I sound like a complete groupie. Let’s just say, it was awesome.
As the conference got closer, I couldn’t help but wonder, How would things be in person? Will I be surprised? Will they be surprised?
I’m happy to report, I have very good taste in people! Everyone was… so… them. Sure, there were some in-real-life discoveries, like my dear friend Jenny, who has an adorable snort-laugh when surprised by something funny. Aside from that, however, I must say that everyone I met was exactly as I imagined. Personalities really do shine through even on much-maligned social media, if you engage deeply enough. It was also a reminder that even though we don’t “see” each other online, they are real interactions, with real impact, on real people. It was truly gratifying to meet so many people who have impacted me so deeply. Ya’ll know who you are.
When you put your kid on the interwebs…
I can’t tell you how many people came up to me last week because they recognized LP from his pictures on this blog. I’ve actually done quite a bit of soul-searching on the topic of putting images of my children on a public blog, but this past week highlighted how the blog has built so many bridges for us, it feels worth it.
My favorite was when I got to meet Patti Saylor, she found me and a friend at lunch and said something like, “I knew when I saw him, it had to be you!”
So, LP, please don’t hate me for writing a public blog about you. It has been therapy, community, and advocacy all in one, and I really think that it will have a positive impact on your life. I hope.
Legislative advocacy in action…
I’ve been plenty critical about the National Down Syndrome Society before, but they do the legislative advocacy right. I was honored to be side by side with so many amazing advocates. I can’t thank NDSS enough for giving me the opportunity to attend, and I hope it was the first of many.
I might have also met Diane Feinstein. No biggie.
The conference started off with an event open only to people who actually have Down syndrome. I loved it! Nothing about us, without us. I knew this was a good sign.
The day of the actual legislative advocacy consisted of over 300 advocates running all around Capitol Hill, meeting with members of Congress. We talked about the ABLE Act, the need for greater research into the link between Down syndrome and Alzheimer’s, and asked people to join the Congressional Down Syndrome Caucus.
This is important stuff, you guys. Right now, rules around government health care benefits force many people with disabilities to live in poverty, because they are not allowed more than $2,000 to their name. If you had to pick between a job and essential health care—I’m talking about things like life-sustaining prescription medication, not just a doctor’s visit here and there—what would you do? I have a personal connection to Alzheimer’s, and recently read that some researchers theorize that Alzheimer’s is acquired Down syndrome. Woah. Don’t we think that this is worth some research dollars? And I bet you didn’t even know that there was a Congressional Down Syndrome Caucus. Well, there is, and all the cool kids are joining.
Here’s what I wish though…
I think we need an organization devoted solely to legal and civil rights advocacy for people with Down syndrome. I think NDSS is doing a great job at the legislative piece, but I was struck this weekend by how much they actually manage to get done for what a small organization they are. Those people are busy! And the advocacy that they do, they are good at doing.
Now I know that legal, civil rights advocacy for people with Down syndrome does happen. It happens at the National Down Syndrome Coalition (NDSC). It happens at the ARC. It happens at NDSS as well, and many other cross disability organizations. I can’t help but wonder, however, if we had it all under one roof.
I’m thinking about how the aftermath of Ethan Saylor’s death could have been different. Still, there has been no accountability for Saylor’s death, and I don’t know if there ever will be. What about the little boy who was dragged across the floor by his own school principal? What about Antonio Martinez, who was pepper sprayed and beaten by police for simply not responding fast enough? I’m not talking about training here, I’m talking about accountability. Litigation. Civil rights. You shouldn’t get to keep your job after you ignore a caretaker’s warnings and use unreasonable force over the cost of a movie ticket. What if…?
I’m also thinking about the thousands upon thousands of families across this country who have to hire lawyers to get their kids into an inclusive school setting, something that is rightfully theirs. Well, what happens if you don’t have the money to hire a lawyer?
I’m thinking about people like Jenny Hatch, who had to fight her own parents in court to be recognized as the adult that she is. There are many, many more people like Hatch who do not happen to have extra support networks to help them fight for their independence.
Legal advocacy is a specialized beast. I can’t tell you how many times my discussions in Grassroots Advocacy Land boil down to legal questions. Just this week, my news feeds have been full of discussions about a woman in Georgia (who has Down syndrome) whose already convicted rapist was granted a new trial. Sex crimes, disability, the court system, and terrible media reporting make for a tangled web.
I’m thinking, I’m thinking, I’m thinking…
No medical outreach. No inspirational stories, no research or legislative agenda. I’m thinking about a group whose sole purpose was to demand what was legally right and just for people with Down syndrome. Justice. I know there are parts and pieces out there, but what if it were all in one place, one unified force? Media outreach. Referral hotlines. Legal resources. Community organizing.
What do you think?
BACK TO THE LEGISLATIVE BIT…
Read about the ABLE Act here, and find out which House and Senate members have agreed to co-sponsor the act. If yours isn’t on that list, pick up the phone! The Garden of My Heart has a great blog post that explains the ABLE Act in simple terms. The ABLE Act isn’t important just for people with Down syndrome. It is important for all people with disabilities and for our economy as a whole.
Learn about the Congressional Down Syndrome Caucus here. Urge your elected officials to join!
Go check out the NDSS legislative agenda, find out how you can get involved.