Dear Mouse: Flight and Grace

Dear Mouse,

You don’t remember your first moments of life, but I do. I used to think it was because of the pregnancy-labor-holy-cow-I-made-a-human progression that primed me for such technicolor memories, but now I’m not sure. Adoptive parents describe that first moment with the same kind of detail and intensity, so maybe it is simply that we parents all experience a similar kind of intense imprinting.

I can still feel your inky black hair under my hand, wet and sticky. I remember the extravagant softness and frailty of your skin under my fingers as I traced along the base of your skull and down to your neck. The rhythmic swell of your rib cage was what I imagined a butterfly must feel the first time it opens its wings, alive but not quite ready to take flight.

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Image: A black and white photo of newborn Mouse, wrapped in a blanket. Her arms are curled up to her face and she is sleeping.

I believe there must have been some spark of recognition that passed between our bodies after connecting for the first time as two fully distinct beings.

And after that, a constant haze of us. Comforting, diapering, feeding, playing. So much holding. You gave me a singular sense of purpose that I’d never felt before. That’s how it has been, for you and all your siblings. Until now.

Now, you’re peeking out from beneath the veil of childhood. Let me have my moment of honesty here: I don’t know whether I’m more concerned for you or for me. Part of me wants to be a selfless mother who is emotional simply out of love. I’m privileged to watch you step out, scared that you’ll get hurt, and excited to see you take flight. Of course, I do feel all those things.

As much as I want to leave it there, here is the other reality: I’m scared for you to pull the veil back and see me. Until now I’ve been just your Mother—infallible source of comfort and understanding. Even when I wasn’t doing it right, I was doing it right, you see?

You keep using all your new maturity to confront me about some legitimately flawed choices and attitudes of mine, and holy parenting-win-that-feels-like-a-loss, is it hard to hear. I feel this completely irrational urge to engage in a tit for tat argument with you, whereby I list out all the ways I’ve been a generous and empathetic and progressive parent, and therefore am completely unworthy of your criticism. But. They tell me I’m not supposed to do that with my seven year old.

You’re leaving me, daughter. We might still be breaking bread together every day and laying down under the same roof, but you’re still leaving me. You’re carefully stepping away from me, and I know that every time you look back, you’ll see me less as Mother, but as mother, the flawed human being who also happened to raise you. I know you’re still young and I know we have a lot of time left, yet I am still left with the feeling of not enough air in the room. I want to breath you in all over again like that first time, go back to that constant haze of us.

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Image: A black and white photo of 7yo Mouse. She is looking off to the side with a smile, her hair is braided and tied with a flower hairband.

Why am I writing this? Maybe so that when you are grown, you can have proof that yes, I knew what was happening. And yes, it was just as awful and miraculous as you could imagine. And yes, I’m screwing up and I know I’m screwing up, but I’m doing my best.

Most of all, I vow now to listen to you without agenda, without judgement, forever. Except when that is really hard for me, and then I ask for grace. I’ve known you for longer than you have memory, before your butterfly heart fluttered and took off on its own. I cannot forget the time before you flew away.

Love,

Me

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Therapy for Children with Disabilities

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.

Not the mommy guilt!

Not the mommy guilt!

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.

75% of my important processes.

75% of my important processes.


Two Years In: Down Syndrome, Recognition, and Pride

My son with Down syndrome was born just a little before Thanksgiving, two years ago. We became a family of five and entered into the holidays, excited and grateful.

Right around Christmas, my mind began to run in ways that I could not seem to put to rest. The features of his face… I couldn’t put my finger on it.

I don’t think I’ll ever forget that week between Christmas and New Year’s. One of those mornings, he opened his eyes.

Then came the flash of recognition.

The first thing I thought was, “Can people look like they have Down syndrome, without actually having it? Because there’s probably no way my kid has Down syndrome.”  The rest of that story is, of course, history. The next days and weeks were filled with a lot of confusion and soul-searching. I would not characterize that time as an easy period of my life.

I find myself pondering the word “recognition.” In that moment, was I maybe having a moment of “re” + “cognition”, as in, understanding again?

From my completely self-centered parent’s perspective, I can write about the holidays as forever being a time that will remind me of when I “discovered” that my son has Down syndrome. That’s pretty silly though. My son has always had Down syndrome, after all.

Two years later, my memories of that week are not entirely about grief, not about sadness or tears.  I’m not denying that part of the experience, but the larger picture is of the process of recognizing the truth that was before us.  Recognizing my baby for who he was, every part.

I’ve also learned from the disability community about the deeper meaning of recognition.  Look in the dictionary, and one will find recognition as not just acknowledgment, but also of legitimacy, validity, and acceptance.  I’ve listened to the words of countless disability advocates showing up every day, saying the hard truth, demanding recognition of what is true and just.  And with those demands, I see a whole lot of pride.  Loud and unapologetic pride.

Stella Young was a disability activist who passed away just a few weeks ago.  She had a tattoo that said, “You get proud by practicing.”  Young was one of the first writers in the disability community who really spoke to me, really shook me out of my confusion and made me reconsider everything I’d ever thought about disability.  Young’s tattoo comes from a poem by Laura Hershey, and I’ll put an excerpt here:

You do not need
A better body, a purer spirit, or a Ph.D.
To be proud.
You do not need
A lot of money, a handsome boyfriend, or a nice car.
You do not need
To be able to walk, or see, or hear,
Or use big, complicated words,
Or do any of those things that you just can’t do
To be proud. A caseworker
Cannot make you proud,
Or a doctor.
You only need more practice.
You get proud by practicing.

I am not considered disabled.  I am a neurotypical, able-bodied person who is raising a child with a disability.  Yet I read Laura Hershey’s words, and I recognize that I, too, need to practice.  Why?  He’s two years old.  I’m his gateway.  I can either enable or block his path to power and pride.

As a parent, I cannot say that my entrance into the disability world was easy.  I doubt that it will ever be easy for me to walk this path; no parenting is.  But two years later, another holiday season is passing, and I’ve come to see an entirely different context for what I experienced.  Practice is hard, and practice might hurt, but I’m immeasurably grateful for beginning that journey.

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