Imagine that someone—let’s call her F. Poe Tenshal—tells you that your baby needs to run faster when he grows up. Ms. Tenshal says that in the world, people need to run at a certain speed in order to do things. Important things. Ms. Tenshal enrolls you and your baby in a program. This program, she says, will allow your baby to reach his fullest, fastest potential. His true self. His best self.
Little do you know, there are two versions of this program.
In version A, you both arrive in some sweet new kicks, you’ve had a power breakfast, a good night of sleep, you are feeling good. The program staff start learning all about your baby, find out what he likes, doesn’t like, his goals, quirks and fears. They start helping him with his running form, it turns out that if he just lifted up his knees a little higher, his stride would get a little longer, and his time would improve. Then your baby gets a little older and it turns out what he really loves is jumping. So they spend a lot of time playing jumping games. And sure, your kid might get tired and discouraged sometimes, but the program is there with support, building him up with praise.
Version B starts off much the same. New kicks, breakfast, rested, ready to roll. But then you get out onto the tracks, and this dude—let’s call him Sergeant Payne—gets all up in your kid’s biz, telling your kid that if he doesn’t get those knees up the future is toast. He’s all in your kid’s face the whole time. Get those knees up! We are gonna get you running just like the other kids. Jump? No, people out there need to run, jumping is just for people who can’t run. Knees up! Despite his frequent claim to care about your son’s future, Sgt. Payne never seems to prioritize anyone’s enjoyment the program, rather choosing to focus on getting the exercises done no matter what. Sometimes your kid sees the Sergeant approaching and bursts out into tears. But you keep going, because well, you don’t want your kid to be a slow runner. All you ever think about lately is how slow he will run, and you wish you could fix it.
This, my friends, is how I’m starting to see therapy for kids with disabilities. There is therapy that builds us up, and therapy that tears us down. I think there are probably a lot of versions out there that do both at the same time. And through it all, I have kept wondering, does all this therapy actually do anything? Does it really change the course of my kid’s development?
Therapy works, except it doesn’t. But it does. Wut?
At this point, I’ve become online friends with hundreds of parents who have children with Down syndrome. I have yet to see any correlation between how much therapy a kid is doing and what that kid’s development looks like. In the United States, children are generally offered quite a bit of therapy. It isn’t uncommon for a kid with Down syndrome to get occupational therapy (OT), physical therapy (PT), speech therapy (ST), and other “extras” like swim or horse riding lessons (aqua and hippotherapy, respectively). In California, you also get something called an Infant Development Specialist (IDS) to come to your house, ostensibly for a broad overview kind of look at your baby’s development. Standard frequency is once a week, so even without the “extra” activities, that turns out to be quite a bit of therapy. In some other countries, kids are getting therapy once a month, if that. I’m not a computer and have no solid statistics, but if therapy really “worked”, one would think that there would be some general patterns. Yet I see nothing.
The thing is, a lot of therapy for kids with developmental delays is just really thoughtful play. I admit that there are a handful of times I have heard friends talk about therapy and thought, ok, that would be hard to replicate at home, but I’m talking something like 99% of therapy being quite ordinary. Stacking blocks, matching shapes, and eating Cheerios. Sure, maybe some foam blocks for weak hands, talking shape sorters for a little extra hint, or cheerios with ranch sauce because that’s the only flavor a certain small someone will accept. But still, it is mostly just regular kid stuff. By and large, the suggestions and ideas our therapists’ years of experience and my intuitive mama observations were not all that different. Sure, there were times that the therapist suggested specific ideas that were helpful, but did they somehow make or break his developmental progress? Doubtful.
As a general matter, I wonder if therapy (including therapy-like tools such as Gemiini, Talk Tools, or neurodevelopmental approaches) works mostly through a secondary effect phenomenon. Participation means a lot of time spent thinking about child development. Take even twice a week therapy, for example. (Which, for the record, could be considered fairly average or low on the scale in the United States.) Just having that therapy twice a week will cause a parent to repeatedly think about the therapy, plan on, recount (to a partner), and question the concepts introduced. That is a lot of mental energy geared towards developmental progress of a child. It would be easy to guess that so much energy would translate into a benefit for the kid, not because of the therapy itself, but simply because of the extra attention that happens in addition to the actual therapy.
Put it another way. There are 168 hours in a week. The average 1-3 year old sleeps 12-14 hours a day. So let’s say your kid clocks in at 12 hour mark. That is 84 hours a week spent awake. At the higher end, say you’re doing therapy five days a week, an hour each time. Five 1 hour sessions of therapy only totals 5.9% of that kid’s waking hours. A kid who only gets therapy once a week is spending only 1.2% of his awake time in therapy. Then say, you go full hog and have your kid in therapy for ten sessions a week, which is 2 sessions every weekday. Two therapy sessions a day is A LOT. That is still only 11.9% of their time. And trust me, if you’re doing ten sessions of therapy a week, you are busy.
Unless you’re talking about ABA therapy (and that is a whole ‘nother ball of wax, whooee), I just am not seeing how MORE THERAPY = FASTER DEVELOPMENT. Because let’s face it, for kids with Down syndrome without an additional diagnosis, therapy is mostly to address low tone and speech issues. What could happen during that handful of hours a week that is going to make your kid walk? Or talk? More likely, it is the other 79 hours a week that a kid spends cruising around furniture to get his mom’s smartphone that has been left on the coffee table, listening to his sister talk about Elsa’s ice powers, or picking up blueberries one by one because they are so darned delicious that will drive most of his development. And as much as therapy focuses a child’s parents on certain aspects of that child’s development, it works, but not because of anything magical about the therapy itself.
(I’m gonna say now: PLEASE DON’T GET MAD AND SAY I’M BASHING THERAPY. My kid is in therapy. I like our therapists. I know parents who do a ton of therapy, some who do none. I see in each and every circumstance why those parents have made the choices they’ve made.)
The secondary effects of therapy can be a mixed bag.
So therapy helps parents tune into their kids. That is positive. I think it also helps create more of a village for kids with disabilities. In a world where kids with disabilities are so often passed over, it can be hugely positive to have someone with a ton of experience come into a family and say, “Your kid is capable and worthy.” One of our therapists in particular has been this for us, and I love her dearly for it. She saw LP for the bright, hilarious kid that he is, and that fed my mama soul.
I think sometimes kids act differently around people inside versus outside of the family and that can be good and bad for therapists. Sometimes LP has been really resistant to playing with therapists (those people with bags of fun toys could be up to no good, I guess). Other times, he’ll be more willing to play a certain way with our therapists than he is with me or his sisters. I notice that most with his speech therapist. He pulls out a lot of words for her that he won’t for me.
There are some other negative secondary effects of therapy as well though. As positive as it might be for a parent to tune into their child’s developmental delays, it can also be really damaging. When LP was around a year old, we decided to cut back on our therapy from once a week to once a month. I could tell that everyone thought it was unusual, but I felt like the amount of therapy was doing more harm than good at that point in our lives. I didn’t feel like it was changing LP’s development; he was doing what he was capable of, nothing more and nothing less. In the meantime, I was growing resentful of the constant tallying of what he was or wasn’t doing, and especially of being compelled to constantly think about what he wasn’t doing. I had no need to be in denial, but it was really disheartening and frustrating to dwell on his delays. It just was what it was, and in the meantime, I realized that I was fixating so much on him being a slow runner, that I missed that he was interested in jumping. As parents we only have so much space in our minds, filling it with what our kids can’t do might crowd out energy to help our kids do what they can do.
The biggest thing that was bothering me was that the girls were starting to ask why their brother had therapy. Frankly, I didn’t have a great answer. I could imagine other circumstances in which I could say, “Your brother needs help with xyz and so Lisa is here to figure that out with us.” But for his particular constellation of existence, I didn’t feel like I could honestly say that. I didn’t think the therapy was actually changing him, so why exactly was a therapist coming to our house once a week?
Plus, it wasn’t just that one hour. It was the half hour before that I was yelling at kids to clean up the living room and while I threw that huge pile of laundry into the guest room. And the entire morning that I lost because there’s not enough time to go to the grocery store before therapy, but after therapy I had to feed the kids lunch and then it is nap time, then I had to pick up your oldest from her friend’s house, then figure out dinner, so the day was effectively over.
Then, in my dark twisty moments, I’d look at someone else’s kid with Down syndrome who was doing something my kid wasn’t and then wonder, oh no, have I made a huge mistake, am I screwing up my kid forever? I’m pretty sure that was just the mommy guilt whispering bad things in my ear.
Banish the mommy guilt, don’t let therapy run your life.
We are lucky to live in a time when a person can get online and instantly connect to thousands and thousands of people in the same life circumstances. For a parent of a kid with disabilities, that means that they can access an impressive hive mind when it comes to therapy-like ideas. The stuff that therapists do is, once you really look at it, relatively intuitive. Is your kid reluctant to crawl? Try putting them at a slight decline so that gravity helps them along. Do you want your kid to get better at using a pincer grasp and they love fruit? Give them a bunch of pomegranate seeds every day. Does it seem like your kid isn’t drinking very well because they can’t feel the liquid? Try something really cold, or fizzy, or even a little (not too) spicy soup.
Out of ideas, confused, frustrated? By all means, go talk to your kid’s therapists. But also, just step back and remember that all kids are developmentally frustrating to themselves and their parents. Right now, Sparrow can only crawl backwards. She is constantly getting stuck under furniture and screaming bloody murder. So every now and then, I put some exciting toy in front of her, put my leg perpendicular to hers for support and gently tap her knees to encourage her to move her legs forward. She does it a few times, falls on her belly and then gets excited that she got closer to the toy. I’m quite sure that if Sparrow had 47 chromosomes, there’d be a lot of talk about “working with her” and “making a plan” and “getting to the next step”. But I’m just trying to help her figure out how to do something she desperately wants to do—crawl forward. Chipmunk and LP both never crawled but scooted on their butts. Every time Chipmunk did it in public, people would comment on how cute and funny it was. Every time LP did it, people would look at me with questions in their eyes, wondering if it was “normal” or not. You get my point. A lot of normal human development is varied, because our bodies and minds are varied. You look out for habits that might be damaging in the long term, but the rest is all good.
Therapy can be great. Therapy can suck. When it is good, do it. When it sucks, do less. When in doubt, trust your child’s process. Kids with disabilities have valuable processes, too.
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.