Masterpieces

I remember reading this article in The Atlantic called “How to Land your Kid in Therapy” when A was just a baby (read it, it’s a good one) and one particular line from Wendy Mogel stood out:

“Our children are not our masterpieces.”

I mm-hmmed and nodded my head and sent the link to Justin. YESTHIS! I embraced it, tucked it away in my heart as one of those guiding principles freakishly idealistic people like me are so fond of.

Fast forward a few years and another baby: mothering is hard.

It’s not the hardest job ever — people who say otherwise probably haven’t served in Afghanistan or performed a heart transplant or picked fruit all day in 100+ degree weather.

But what I mean to say is that motherhood is hard for me. It’s day-in, day-out, and while people who say it’s the hardest job are totally full of it, I admit their reports of not ever getting sick days are accurate.

Babies and small children are just such bottomless pits of need and want. The sheer amount of potty-taking, butt-wiping, diaper-changing, food-making, face-wiping, booger-extracting, juice-getting, lego-building, share-that-with-your-brother-ing, jacket-donning, walk-taking, owie-kissing, bath-giving, nail-trimming, hair-combing, teeth-brushing, bedtime-story-ing and back-to-bed-ing-ad-nauseum that goes into a mere 24 hours blows my mind a little.

Most days I really do enjoy it, but it takes a toll. I’m a fraction of my former self mentally, emotionally, physically. And sometimes I just NEED to know that I’m doing something right, that my kids are somehow benefiting from spending the majority of their day with this particular mama, instead of, say, the proverbial pack of wolves.

On a gut level I know my kids are not my masterpieces. OF COURSE I know that. But a few levels down from that healthy, well-adjusted place — a spot where it’s reeeeally hard to be honest — I know I want some definitive proof, something I can point to and think: “Huh. I guess I’m doing alright.”

And, sadly, below that, there’s this: the place where I need other people to think I’m doing a good job.

And that, friends, is where we come to Thanksgiving dinner with our extended family on Justin’s side.

Oh. My. God.

Let me just say: we all got off to a rather bumpy start. Things are better now, but I’m still a bundle of nerves in their presence, not wanting anything to disturb what still sometimes feels like a fragile peace.

Names have been changed to protect the indulgent, but A sat next to Bart Simpson at dinner. Every naughty thing A did was HI-larious. Egged on and encouraged, even. “No” isn’t really in Bart’s lexicon. “Let’s be little a-holes at dinner” was more like it.

I was at the far end of the table, asking A to eat his food, asking him to stop spitting and making messes, utilizing every “mom-look” in my repertoire.

It was a constant battle. None of it worked.

Toddlers are as smart as they are ruthless. And where there is weakness, they will always win. Bart Simpson was a weakness, our inability to enact home rules was a weakness, and my darling son exploited every bit of it. He’s no dummy.

We took a tantrum-y time out on the front porch in the middle of a totally beautiful, heart-felt what-I’m-thankful-for session — my favorite part of these gatherings and the most opportune moment to strengthen the bond with my in-laws.

Ugh. It wasn’t his last time-out, and he needed far more than he got.

In the midst of our next attempt at course correction, Bart Simpson told us to “oh, calm down.” And in that moment I’m not sure which felt worse: the worry that people would think I’m a bad mom, or that — far more likely — they’d think I’m a critical, over-bearing one who can’t just let boys be boys.

We still had a pretty good time, and I was glad to see everyone, but it took a few days before I was thinking from that happy, well-adjusted place again instead of feeling awful and worrying what people may have thought or not thought. (Large groups: welcome to my nightmare).

I’ve been turning it round and round in my head, and it seems that as a mom you just have to get real comfortable with making calls that not everyone is going to agree with.

Good. ‘Cause that’s easy.

(If any of you have figured it out, please let me know your secret).

I’ve gotten this far: not in every case, but in many, I know what’s best for my son and at almost 3 years old, consistency and good boundaries seem to serve him — and others — well. They keep him safe, they keep him nourished, they keep him kind. When he knows he can’t get away with murder, he’s a pretty happy, chilled-out kid, prone to only normal levels of shenanigans.

Anyone who spends lots of time in our home knows that. And the thing is, I know it too. So why the worry?

He’s not my masterpiece. He is his own and if I’m lucky he’ll let me help him learn how to hold the paintbrush.

But this past few days has me thinking: if I can start living and loving and mothering from a place of comfort and confidence, caring about our family’s wellbeing instead of what other people might think . . . well, that would be something. I feel like I could point to that and be pretty damn proud of myself.

Sometimes it feels like it might be my life’s great work.

Trying to learn to use words

It’s been a big week. Writing about A’s suspected apraxia seems to have helped a lot of things fall into place for me. It was such a relief to explain exactly what’s going on. Thanks to so many of you, by the way, for the words of encouragement and support.

Justin and I have talked a lot this past week. We’ve been doing research, reading about things we can try to help A (most everything is anecdotal, however — as apraxia is a somewhat rare disorder, there have been very few comprehensive studies about it to date). We’re trying nutritional supplements and fish oils. They are expensive, and there’s a huge part of me that says: “Special needs parents: a particularly vulnerable sucker population.” But we have to try, at least for a while. At the very least, his motor difficulties make new textures difficult and he’s a crazy picky eater. The better nutrition certainly can’t hurt him.

This morning I had a heart to heart with our speech therapist, asking our questions and basically telling her she could “give it to us straight.” She’s purposely been restrained in how much information she has given us at a time, which I appreciate. As she said this morning, “If I’d have told you 15 months ago what you know today, you’d still be curled up over there in the corner.”

She’s a smart lady. And she nodded gently with a sort of familiar understanding when the tears slipped down my cheeks in spite of myself as we spoke. I admitted I had long suspected most of what she was telling me.

It really does feel like Justin and I have taken this on in waves. We learn a bit more, take a few new steps, and the water comes up to meet us. We brace ourselves and step further, and another wave takes us deeper still. The water is cold, but we are growing accustomed.

Most importantly, we aren’t panicking.

At least, not too much. We’d be crazy or dead to not worry at all about our son. But it’s starting to feel like an appropriate level of worry, a sustainable kind of concern.

I’m kicking around the idea of doing a blog specifically about this experience, both to keep me a little more sane and to help point other parents in our area to resources (it’s been a privilege to be able to tell other concerned parents “Here’s where you start. Call this place. Go to this website.”).

As I was thinking through what the blog might be called, a line from a favorite TS Eliot poem came to mind. The poem is about writing, but more specifically it’s about words. And as I began to think about it from an apraxia frame of reference, it blew my mind a little. I sat straight up in bed as I re-read the lines.

I first came across Four Quartets in 2007 when I was returning to Western to earn my English degree. Justin and I had been married shortly before, and after so much time away from school, it’s no stretch to say that I was terrified of failing yet again. I was certain that everyone in the room had reason to be there except me.

Back then, I was definitely panicking. It was months before I had the confidence I needed to thrive. But in the meantime, these words were incredibly meaningful:

Trying to learn to use words, and every attempt
Is a wholly new start, and a different kind of failure

Because one has only learnt to get the better of words
For the thing one no longer has to say, or the way in which
One is no longer disposed to say it. And so each venture
Is a new beginning, a raid on the inarticulate

With shabby equipment always deteriorating
In the general mess of imprecision of feeling,
Undisciplined squads of emotion. And what there is to conquer
By strength and submission, has already been discovered
Once or twice, or several times, by men whom one cannot hope
To emulate—but there is no competition—
There is only the fight to recover what has been lost
And found and lost again and again:
and now, under conditions
That seem unpropitious. But perhaps neither gain nor loss.
For us, there is only the trying. The rest is not our business.

Today, it’s like reading a completely different poem. Clearly, Eliot’s not writing about apraxia here, but I can’t help but think of A groping and fumbling for the right mouth position. I think of him attempting the same word 4 times, differently every time. Milk: “Ittt. Mitt. Mmmihlllkkk.” And then, the very next attempt, we’re back to “mitt.” or even “bitt.”

Every time he opens his mouth it’s a battle.

But damn, if that kid doesn’t try and try and try and try. Ninety-nine percent of the time I prompt him for that missing sound, he keeps at it, over and over. Our ST says A’s determination to learn is a huge reason why his prognosis is better than kids with less steep delays — he’s just so willing to stick to it and do the work til he gets it.

I couldn’t be more proud of him. Half the time I can’t tell if this is my heart breaking or just bursting with pride. It’s often a mix. Even at 7 months he was a fighter, rolling circles around our living room in heavy thigh-high casts while his feet were being fixed. He was just so determined to get where he wanted to go. Not much has changed, really.

There is uncertainty ahead. The only thing I know for sure is that the next few months will take us even deeper. There are no quick fixes here and we have much to learn. But I’m hanging on to that “there is only the trying” thing. If there’s anything our family is good at, it’s the trying.

I’m doing what I know to do. Loving my boys as hard as I can. Saying “Look at my mouth, A,” about a thousand times a day.

The rest is not my business.

A is for Apraxia

One of the hardest things in life is having words in your heart that you can’t utter.

—James Earl Jones

We met with a representative from our school district on Monday to talk about the special education services that are available to A from now through kindergarten and beyond. Later in the evening, Justin and I sat talking about it. I got quiet and a little teary.

We’d both felt good about the meeting. It was encouraging in a lot of ways.

It’s just that the reality and scope of what all of this means for A and for our family keeps sinking in at surprising times and in surprising new ways. [Insert sentence here about how I’m cognizant and grateful that it’s not so many much more difficult things that other families deal with. But this is hard and I’m learning to be okay with admitting it].

Earlier in the day before the meeting, Ash and I were sitting on the couch and he was trying to tell me something. He was making lots of sounds, but not one of them made any sense to me. He tried probably 8-10 times to tell me. I asked him to show me, but it must have been something abstract because he couldn’t do that.

I was sad and frustrated and, to be honest, a little irritated all at once. With myself, with him, with the whole situation.

I’m A’s primary caregiver, so I’m usually the one who is able to piece together what A is saying via a patched-together mess of signs and context and incomplete word sounds. When even I can’t place it, I feel so helpless. Ash is a bright kid with boundless enthusiasm and a lot to say. We can’t understand it.

I’m realizing now that for a long time I thought it was just a matter of A learning how to make the sounds that were missing . . . how to say the “b” in ball or the “c” in cat. But it’s so much more than that. When prompted, most of the time he can imitate the sound we’re going for (though he still mixes up sounds and subs in one he knows if the one we’re asking for is too hard).

For A, the neurological connections that allow most of us to move our bodies and our mouths without even having to think about it are not (yet) present. It’s like he has to plan every movement in a word before even getting started. It’s no wonder than when he’s trying to talk spontaneously, he’s leaving all the hard parts out.

Here’s A saying his numbers: Uhn, ooh, eeh, err, igh, ix, enn, eight, ine, enn. His ABC’s sound like this: A, E, E, E, E, eff, E . . .

Milk comes out “itt.” So does sit. Hurt sounds pretty similar too. He’s sitting next to me sorting his crayons into piles of colors right now, and just said “ooo . . . ow.” Which, of course, means “blue pile.”

There’s not a day that goes by I’m not thankful we learned signs. I had no idea at the time that even after A started “talking”, we’d need them. Almost more than ever. These days, he expects us to understand.

***

A is rapidly approaching his 3rd birthday, which means he will age out of the Early Intervention program he’s been a part of since he was 18 months old. I’m simultaneously excited and a little sad. We’ve had such strong support — speech therapy in our home once a week with an amazing therapist and a structured play group once a week (play, music, arts & crafts, snack, etc). We recently added another weekly class — a pilot program for children with motor-related speech delays. (They are seeing a huge increase in the number of kids with motor-related speech delays, so they’re working to find new therapies that might work better for those children).

The rep called out A’s struggles within 5 minutes of arrival. It’s always a little startling for me as a parent to see how apparent his delays are to a trained eye. Motor skills. Apraxia.

We’ve avoided an official label for A’s delay because under 2 1/2, a good diagnosis is difficult, and also because our ST didn’t want to freak me out. She knew I would do research (because, as she describes me, I’m Type A. Never had that description in my life — ever — until I became a parent and I had to figure out a way to feel, if not in control, informed about how best to help my son. I’ve never been so organized in my life, but it’s by necessity.)

But at the meeting it was clear that the word we’re using is Apraxia, or more specifically Childhood Apraxia of Speech (CAS). This wasn’t a shock, but the whole meeting still felt full of such odd contradictions.  He knows his ABC’s and numbers but can’t say them. He knows and understands a huge vocabulary. But left to his own devices (no prompts), he’s limited to a few sounds. He can spell ASHER, but if he were to get lost, he wouldn’t be able to tell a grownup his name. Such a smart, social kid, held back by the inability to speak.

Our representative stated it this way: “He’ll go from developmental ed to the gifted program once he’s older — I’m calling it now.”

I’ve been trying to find a good explanation so friends and family will understand why this isn’t just a “he’ll catch up” situation and why we’re so invested in his therapies. Here’s a great description I found in this article:

Children with apraxia of speech know what they want to say, but their brains have difficulty coordinating the muscle movements of the lips, jaw and tongue necessary to say those words. Often, these kids speak in only vowel sounds or chunks of words and sentences are missing.

Yup. Exactly. This. (For more information, this was also helpful).

The causes of CAS are largely a mystery. The true numbers are hard to pin down, but between 1-10 of every 10,000 kids deal with it.

We know that there can be a genetic component (though no one in either of our families had speech issues. We are keeping our fingers crossed for F, as it’s not uncommon for sibs to both have difficulty). We know that it can be related to low muscle tone and a lack of movement in infancy. Check and check in A’s case, especially when we think about months spent in the boots and bar to correct his metatarsus adductus. If I had it to do over again, we would have found another way to correct his feet, but we went with what we knew at the time. A had eating struggles and met all of his movement milestones quite late even before the boots and bar, so though the lack of movement didn’t do him any favors, chances are we’d be here anyway. I try not to make myself crazy with what-ifs and chicken-egg scenarios.

What we are trying to do is figure out the best way to help him. We’re realizing we need to prompt him for the right sound, even if we are able to understand him, so he can get good practice in. It’s a little exhausting to be lay speech therapists all the time, but the practice matters, so we’re doing our best to remember.

In December, A will be evaluated by the district to see if he qualifies for services, among them continued speech therapy and developmental preschool. I’m fervently hoping Ash gets into both. Preschool would be mornings 4 days a week and a bus would pick him up here in front of our house. Without knowing school is a possibility, every time we pass a school bus, A points, says “us” and then signs “my turn.” So I think he’ll be ready.

It’s painful at times, but I can say without hesitation that this beautiful boy is making me better. He’s opening my eyes and my heart to other parents, other kids with all kinds of disabilities (our playgroup has a child with cerebral palsy and another with spina bifida). He’s teaching me how to celebrate each day’s victories, no matter how small. They’re all significant.

Yesterday morning we got up and the sun was just starting to shine in the windows along our stairway. A’s eyes LIT UP and he yelled at the top of his little lungs, “AY! IME! UHN! UP!”

…while signing “day” (a sign we didn’t teach him?) and “sun.” Daytime! Sun is up!

I love waking up to that kind of unbridled joy every morning.

And I know better than to take for granted the fact that I understood why he was filled to the brim with it.

I’m slightly overwhelmed but so grateful.

IMAG3770_1

we hear footsteps

The boys and I were out on a walk not long ago and, coming back from the park, A met a little girl named Bailey. They stood no more than a foot apart, looking each other over, blissfully unselfconscious like 2 year olds are. She spoke in sentences, A managed a hi, and I chatted with Bailey’s grandma for a few minutes. Bailey got a hug in, and then the chase was on as A suddenly turned a bit shy in the rare presence of a girl.

We started to move on, and I told A to say bye-bye. He hugged Bailey, and then the two of them leaned in and before I even knew what was happening, MUAH! A had received his first kiss.

Nailed it!

As we finished our walk home, I was quietly happy in the realization that these two little ones are seeing love and affection often enough that it seems like the most natural thing in the world, to hug and kiss a brand-new friend. Social awareness and boundaries and everything proper will kick in someday in the not-too-distant future, but it was a tender little moment and I was glad to witness it.

***

Ever since A has been mobile, it’s a rare occurrence that Justin and I hug or smooch alone in the kitchen for long. He’ll peek up from his play, quickly conclude that he is missing out, and come tearing into the kitchen and around the corner, arms already outstretched to be pulled up and in.

Recently A’s started to insist that F gets in on the fun too and my heart feels like it’s just going to pop. The four of us — all arms and kisses and wiggles. There’s so much we’re still learning, so many places where we have no idea what we’re doing as parents, but I think he’s learning love from us, right there in the kitchen. It’s a perfect moment that I will carry with me for life, long after my boys are big.

Almost every time this happens, as I hear the skid of footie pajamas on the hardwood floor and smile at Justin, my mind flits back to a poem he read me up in Bellingham shortly after we’d graduated. Little did he know what he was doing (or I’m sure he’d have waited a few years before busting out this poem, ha), but I heard the words and in this flash of clarity I knew that I was ready to be a mama if Justin was ready too and if God were to bless me with children.

It was at this exact moment I realized I wanted our family to be more than just us two; that I wanted somehow for our love to be shared and inexplicably multiplied. These words perfectly capture what I’d imagined being parents together would feel like — at least sometimes — and now that our boys are here, the words still ring beautifully true. Especially the smiling at each other, the shared glance. Ugh. My little sap heart cannot get enough. Even when there’s an inopportune knock at our door, I can’t help but grin. Justin shakes his head, but he’s smiling too, as he quickly shoos our little man back to bed for the 8000th time.

Here it is. Galway Kinnell, poet genius. And, dare I say it, rather sexy poet genius.

Enjoy, but use responsibly.

AFTER MAKING LOVE WE HEAR FOOTSTEPS (audio)

For I can snore like a bullhorn
or play loud music
or sit up talking with any reasonably sober Irishman
and Fergus will only sink deeper
into his dreamless sleep, which goes by all in one flash,
but let there be that heavy breathing
or a stifled come-cry anywhere in the house
and he will wrench himself awake
and make for it on the run—as now, we lie together,
after making love, quiet, touching along the length of our bodies,
familiar touch of the long-married,
and he appears—in his baseball pajamas, it happens,
the neck opening so small he has to screw them on—
and flops down between us and hugs us and snuggles himself to sleep,
his face gleaming with satisfaction at being this very child.

In the half darkness we look at each other
and smile
and touch arms across this little, startlingly muscled body—
this one whom habit of memory propels to the ground of his making,
sleeper only the mortal sounds can sing awake,
this blessing love gives again into our arms.

—Galway Kinnell

Update on the boys

Our awesome physical therapist came by today to check on the boys . . . so many good pieces of news!

A is now meeting ALL of his gross and fine motor-skills milestones for age 2 1/2 to 3. Linda said repeatedly: “He’s closed the gap!” When all this started, our pediatrician said that A would be noticeably behind his peers the same age at least through the age of 5 . . . it is such an amazing relief to see him where he should be. Jumping. Climbing stairs. Balancing. Dressing himself. Swimming like a little fish.

His feet look AMAZING. You’d never know he was ever pigeon-toed OR that he’d been overcorrected too far out with the boots and bar. He’ll need orthotics for a while yet, but he’s come SO far. Other than a little extra clumsiness and bruises everywhere (which is probably pretty typical anyway) and the little bits of blue plastic sticking out of his shoes, he looks just like any other kid his age.

We’re still going to work on some exercises and activities to strengthen A’s fine motor skills — what I’m learning is that the same parts of the brain are behind fine motor skills in your fingers are also behind the fine motor skills in the tiny muscles in the face (A’s particular kind of speech delay is due to him being unable to coordinate the muscles in his face). So any work we do with his hands will help his speech. Crazy how the brain works!

Speech is coming along slow but sure. Sign language is still coming in super handy, but along with his signs A is now spontaneously saying all kinds of words . . . the ends of them, at least. Because motor planning is also a big struggle, it seems easier for him to skip the initial consonants for most words. “Iss” for “kiss.” “Op” instead of “stop.” “Een” instead of “green.” Etc. (Selfishly, I still get a good strong “MAMA” though, so I’m happy). When I sing to him at night, if I go slow enough, he’ll sing too (and make a teary mess of me).

Cognitively, he is flying. He knows and recognizes his ABC’s and numbers (and frequently likes to stop on walks to read them out on license plates). We’ve been using this online resource called starfall.com (seriously, parents of young kiddos, check it out!) and A is picking up new things by the day. Some of the stuff he’s doing is far beyond what I would think to challenge him with. He begs to do his “letters” and we are happy to oblige!

I think of where we were a year ago, and I feel overwhelmed at how far he’s come. We’ve been so blessed by our team of therapists and his little school that we go to once a week. I already know I will seriously miss the team when Ash turns 3! At that point, A will be tested through the school district. It’s likely that he’ll qualify for speech therapy, but it’s also quite possible that he’ll qualify for the developmental preschool through the district too. We’ll see, but I’m thrilled at the options that are available to help A continue to grow.

We also checked in on F. His muscle tone is great, but we’re still dealing with the pigeon-toe issue, one foot quite a bit worse than the other. Makes it hard for the dude to balance! Even there, though, we had good news. He’s got a lot more flexibility in the bad foot and is far less severe than A was. We do need to start putting the orthotics on him everyday, which is challenging with him still being so gangly and wiggly, but it’s nothing compared to casts and boots/bar, so we’ll take it.

I know that people have checked in with us on various parts of this whole thing, so I just wanted to let folks in on how it’s going. This mama’s heart is SO relieved and grateful. We’ve still got some work ahead, but to be seeing tangible progress, to see my boy talking . . . it makes all of the extras we’ve been doing this past year so worth it.

Thanks to our friends and family for encouraging us and praying for us — it sure has meant a lot.