Being Clear-Eyed About My Special Needs Child, And My Responsibility To Her


¾ of the way through Day 3 of iCanBike camp, the gym at the YMCA was starting to get less crowded as the more successful campers started heading outside with their volunteers to transition to independent riding. The speakers were playing “give ‘em hell” music like “Eye of the Tiger” and “How You Like Me Now?”, and at the far end, the head volunteer was trying to coax Miss Julianna, in her Frozen t-shirt and polka-dotted skort, off her roller bike and onto two wheels for the first time this week. She was not enthusiastic about the prospect.

And then the strains of The Heavy disappeared to be replaced by:

It worked. Soon enough, Julianna was circling the gym—slowly—on two wheels, the head volunteer holding onto the support pole on the back. Singing, of course. (Julianna, not the volunteer.) And about the time Julianna started sing-shouting, “The fears that once controlled me can’t get to me at all!”, she picked up some speed and the volunteer was able to let go and Julianna rode a bike about twenty feet without anyone holding onto her for the first time in her life.

Photo by ICanBike Fulton

As special needs parents, these are moments we cling to. Because the reality is that although these tend to be the moments we share, they are not the rule in our lives.

For every one of these, there are five or ten where I tell Julianna, “Put your clothes away,” and discover that she’s put her dirty underwear and socks back in the drawer with her clean clothes; then, when I scold her and tell her to put them in the laundry, she puts the entire contents of the drawer in the laundry. Or, in an excess of desire to be like her brothers, who are packing for vacation (and who are occupying every bit of my attention and then some), she pulls out every shirt she owns and dumps it on my bed. And when I say, “Julianna, we’ve got to make lunch right now. Put those back, and we’ll pack you after lunch,” she instead empties ALL of her drawers onto the floor of her room.

It’s hard for me to know how much she really doesn’t understand, and how much she is pretending not to. In the above examples, I wasn’t being very concrete. But often I do stop, look her in the eye, and speak very slowly: I need you to put your dirty clothes in the laundry…(pause)…and THEN…(pause)…fold your clean clothes and put them away. Sometimes I even have her repeat it back to me. And more times than not, the outcome is virtually the same.

It’s hard for me to accept that my 10 1/2 year old, who can read literally anything you put in front of her (well, okay, if you presented her with a foreign language or with medical jargon, you could stump her, but otherwise) really is incapable of carrying out a sequence of three simple instructions that she’s been doing every single day for years.

It’s also hard to accept that this experience gives credence to the stinging note on the final reading assessment of last school year–the one where it said she would be well served by handing her preschool books to read.

We’ve been very laissez-faire with Julianna…pretty much her whole life. Partly it’s philosophical, but mostly I think it’s because hey, we have three boys and it’s madness–madness, I tell you. This summer, for instance, I made a conscious decision to focus on getting Nicholas and Michael to swim lessons, because they can learn and learn quickly and be safe in the pool, and that’s one set of lessons we don’t have to mess with anymore! But Julianna isn’t served well by the same instruction–I mean, she does fine, but she’s so slow to progress, it’s a poor use of time and money–so right now she’s sitting out, and when fall ball is over we’ll spend the money on private swim lessons through the winter, when other things are not going on.

But I often feel my conscience pricked at the conviction that if I worked with her more consistently–on reading comprehension, for instance–that she would progress more, that she would be doing better. That I am underserving her mostly because I find the process frustrating. That I, in sum, am not being the best mother to her that I could. Or should.

And often I remind myself it doesn’t matter that much if it takes her 2-3 years longer to learn something than it would if I were more on top of things–because it’s not like we’re chasing a goal of success in trigonometry, statistics, and AP English.

But I really thought by the time she was 10, I could be reading Anne of Green Gables with her. I’ve been looking forward to that for a long time. And she’s just nowhere near that.

So when special needs parents share those moments that seem so small, so ordinary, it’s not just because we want people to understand that our kids can do the same things other kids can do, even if it’s harder or takes longer to get there. It’s also because we have this whole deep ocean of repeated failure that we don’t share. In part that is because we don’t want to be the whiners nobody listens to. But it’s also because we feel a huge, huge responsibility not to scare people off welcoming kids with disabilities into their worlds.

It’s an impossible juggling act, and one we navigate every single day of our lives. Just some days, we are better at it than others.

The trials and tribulations of Kate, mother

Golden Hour Swing

Don’t let those innocent faces fool you. I’m on to them.

In the past week, a couple things have happened in my world.

First, we learned that our 5 1/2-year-old needs a nap after school. Luckily, it only took us two days to realize what was going on. Unluckily, we haven’t figured out how to make it really work yet, so sometimes it happens, and sometimes…it doesn’t.

Second, I’d had it up to HERE (envision the hand at the hairline) with being ignored. For example: that blasted black sock was STILL sitting on the living room floor THREE DAYS and FIVE REMINDERS after first being pointed out/instructed to put it away.

I was not happy. Not happy at all.

Saturday morning, I cornered the kids in the van, where they were all seatbelted in and couldn’t get away, and I announced (calmly) (mostly) a change in procedures in our house. From now on, I will give an instruction one time. If I have to give it again, the consequence will be an extra chore. Two reminders = two extra chores. Three strikes and you’ve lost your screen time for the day.

That was 9:30 a.m. By lunchtime, Michael had lost his screen time.

On Sunday, Nicholas made it to two strikes. Even though we had a conversation about it while he was doing the job I’d given him.

(What kind of conversation, you say? I’m so glad you asked. Here’s a strong-willed child insight: “So,” he says, as he’s sllllooooowwwwwwllly doing what I told him and getting his a) loose change, b) wallet, c) ear buds, d) book off the table so I can set for dinner. “So…do we get three strikes every day? Or do they just add up till we hit three?” Would you like to know where I found all that stuff? On the stairs. Still not put away. Envision me pounding my head against the nearest hard surface.)

But wait! There’s more! Sign up today and for absolutely free (oh wait, this isn’t an infomercial? my bad) you’ll get Miss Julianna on Sunday afternoon, trying to sneak extra iPad time by closing the door to the boys’ room so I wouldn’t hear it talking to her.

And that night, in what is becoming almost a nightly pattern, we came upstairs to go to bed and found Nicholas and Michael having a sleepover on their floor.

As my husband is known to say, when told of his children’s latest and greatest exploits:


A Message for Young Moms From Someone with A Little More Experience


Photo by happyworker, via Flickr

The day school let out for Christmas, I walked seven kids, ages 5 to 11, about a mile from school to the mall, across nine lanes of traffic on one of the busiest roads in town, so we could ring the Salvation Army bell at JCPenney.

And I wasn’t nervous about it.

I knew it already, but I realized anew, as we made that trek, that I’ve passed a milestone. I am officially an experienced mom.

I cried when Christian went back to work after Alex was born. The idea of being solely responsible for this tiny baby all day long had me overwhelmed. Overwhelmed by love for this beautiful child, but also panicked—how in the world would I structure these ten-hour days?

I was spared all that when Julianna was born because we were instantly launched into crisis mode: coming to terms with a less glamorous vision of parenthood, figuring out all the extra paperwork required to get a child with a disability the services she needed, and trying to keep it together so I wouldn’t flip out and traumatize my toddler.

And then, of course, she almost died at six weeks old, so….yeah. Crisis mode. (One of my most profound memories of that time is leaving to grocery shop while Julianna was in the PICU, and Alex, not quite two years old, thinking I’d forgotten her, and pointing at the empty car seat saying, “Beebee! Beebee!”)

But I do remember that going anywhere in those early years was a huge production, and I always planned a recovery day afterward.

Practicing natural family planning during that time involved a lot of calling my NFP guru, saying, “I know I’m an NFP teacher myself but I’m still freaking out!”

I remember crying to my OB about my anxieties about marriage, parenting, NFP and cycles, and the soft, gentle wisdom he offered.

I guess it was two years ago now that I went to that same doctor for my yearly appointment and said, “Yeah, I can see my cycles changing, and I know which months my body’s ovulating for real and when it’s just playing pretend.” I remember him smiling and saying something about experienced mothers.

That was the first time anyone said that to me.

Experienced moms tend to say to new(ish) moms, “Just you wait! It’s all going to get SOOOOO much harder!” Or: “Enjoy this! You’re gonna miss this!”

I always hated that. I mean, someone’s struggling, and they need support, not being told their struggles don’t count.

New(ish) moms, if I ever say such a thing to you, please do me a favor and punch me in the face.

The challenges I’m facing now have much more far-reaching implications. I’m not growing small children anymore, I’m growing adults who need to have the moral judgment and the self-mastery to be, yanno, good human beings. All those things were true in small childhood, too, but the more advanced lessons require proportionally larger brainpower, plus it’s always clear how little control you have—you’re trying to outsmart your kid into making the right decisions, rather than just being able to say, “It shall be as I say it shall be.” You hurt for your kids in a new way; boo boo kisses don’t cut it anymore, and you really can’t prevent or ease the inevitable heartbreaks and screwups.

So it’s tempting to look back at early childhood and only see the simplicity of the tasks–feeding, clothing and napping–and filter out just how intense that simplicity is, how much it demands of you physically. Between pregnancy, breastfeeding, and comforting night wakers, my body didn’t belong to me for eight years. I functioned on 5-6 (interrupted) hours of sleep and sometimes a catnap. For eight years.

I haven’t had a real meltdown in a very long time–because now I get to send my kids to bed before I go to bed and they stay there until after I get up the next morning. Because my hormones are on a normal cycle now. Three of my kids can read to themselves. A different three can build their own LEGO creations. They can play outside together without me having to have eyes on them every moment. I don’t have to type one-handed or hold a child on one hip while I’m cooking. They can help with the house cleaning and the dinner chores. (They’re bad at it, but in a pinch—and we’re always in a pinch—it’ll do.)

So my message for younger mothers is this: the days are coming. It will get better, it will get easier, and richer. The investments you’re making now, in trust between you and your children, are going to pay off. You’ll feel better—physically, emotionally. It’s coming, I promise. And yes, there’s a tradeoff: the challenges aren’t going to disappear, they’re just going to shift. But the things that make you feel stretched to the limit right now are going to pass away.

Have hope.


Photo by ĐāżŦ {mostly absent}, via Flickr


The Problem(s) With Mother’s Day

motherhood ideal

How Motherhood is Supposed To Look


How motherhood ACTUALLY looks today. Photo by Sangudo, via Flickr

The problems with Mothers Day are legion.

1. It’s not fair to the dads. Mother’s day is way, way, way bigger a deal than Father’s Day, and that’s just not okay.

2. Everybody wants to give mom gifts for one day, make these adorable crafts that you’re expected to keep for all time, and it often seems to me that we’d rather substitute sentiment for actual, you know, LOVE. Like, recognizing that what Mom really needs is help ALL THE TIME, not some craft that just adds to the mess and only honors you one day a year anyway!

3. While we’re on that subject, let’s talk about lightsabers, books, individual LEGO pieces, Captain America Shields, bookbags, knot rosaries, school crafts, school papers, Wii remotes, DVDs no one has watched, scrapbooks, candy wrappers, pencils, erasers, crayons, play doh, soccer balls, bouncy balls, basketballs, crappy party-favor pinball mazes (do you get the idea?) left lying wherever you lost interest in them, cluttering up the world. And yet if i throw anything away, woe to me!

3a. While we’re on that subject, let’s talk about “Put away your clothes,” and how that translates to “I’m going to read a book/build a marble run/stuff them in a wad under the closet rod/ignore you completely” the first FIVE TIMES I SAY IT.

4. Nor does it matter how many times we teach, discuss, or give consequences. Nor does it matter how many attempts at organizational systems we put together.

5. And then there’s the outcry and protest whenever I assign jobs: “I did that last week!” and “no fair, he never has to!…”

6. And then there’s the inevitable annual inner conflict between “I am a mother” and “I HAVE a mother.” How do you balance being the recipient of all this attention with giving it appropriately to the one who gave you life? And then of course, your husband has a mother, too. It’s like you have to choose who gets your attention, and then even if the other one (or more, depending on if you have broken families) doesn’t feel hurt, you inevitably are aware that you’re prioritizing one over another. When I start griping about the way a holiday is celebrated, one of my sisters always gives me grief about it (“is there any holiday you DO like?” she’s asked me), but this is why: I don’t see how we can possibly honor our mothers as we’re supposed to on this day and at the same time accept that honor ourselves. It’s like the system is stacked against us.

7. Yes, I know. This is what parenthood is: assuming heroic, even foolhardy, responsibility for other human beings. To burn away their innate selfishness and teach them to be Good People is not just a job. It’s not even just a vocation. It’s something that is way, way bigger than any of us. And when I think about how much time I spend worrying about whether someone’s going to call DFS because I let my kid climb a tree or because he fell down and skinned his knee and is screaming as if he’s had his leg torn off by a shark…well, I get kind of pissy. And when the kids fall to demanding, whining, and being lazy/disobedient despite the fact that they really aren’t being asked to do all that much, and they’re given way more privileges than I ever got growing up? Then I have a Mommy Meltdown. And we start making new lists to hang on the pantry door.


Yeah, Happy Mothers Day to you, too.

Love, Kate

Linking to 7 Quick Takes, because I’m sure they’re all talking about motherhood today, too. Although probably with less angst.