Thursday, July 9, 2015

The Holy Grail of the "Developmental Delay"

Yesterday I spent time cleaning out some toys and books, donating and trashing and reorganizing. I came across a good number of toys with memories that started like this:  I remember this! It was a birthday gift that we asked for because the little pieces were supposed to help with developing a pincer grasp! I know now, as a seasoned therapy-participating parent, that literally any toy can be used in a way to target therapy goals (fine motor, gross motor, imaginative play, speech games) but when Maya was small, missing milestones, and difficult to motivate (if you moved a toy from her reach, she would generally just find something else to look at, or wait to see if it would come back) I was constantly hunting for some thing, any thing, that would be the thing. The thing that she loved enough to fight for . . . the thing that was so rewarding that she would work her fingers to activate it . . . the thing that she wanted so badly she would do the work of trying to pull up to get to it. 

These type of memories, in which I thought meeting milestones was somehow just an issue of motivation and willingness to work a little harder, sting in a particularly specific way. It's not really a memory of the toy, it's a memory of the way that I thought about the toy . . . a little time-hop into the mind of the mom that I was back when we were just delayed on the path of typical development, when I thought that if we worked hard enough and smart enough we could still catch right up . . . into the mind of a mom who doesn't see yet that we're on a totally different road. 

I cleared things out and thought "I should write about this, this stuff of special needs parenting, the pursuit of some object that will elicit some behavior that will solve all of the problems."

And then I remembered that once upon a time (four years ago), I did write about it, but it never got posted. So, here it is:



The Holy Grail of the "Developmental Delay"

“I really think you should put up a barre,” Karen said, gesturing to the wall in our hallway, about 2 feet off the ground. 

“A barre?  Like, a ballet barre?”  I doubtfully looked where her hand was, the walls smooth and light blue, and imagine the screws and rods that would support a barre.   A week earlier I had managed to create three extra holes in the bathroom wall just attempting to hang a picture frame . . . I could probably do some  impressive damage trying to install something sturdy enough to bear weight.   Big holes and crumbling plaster.  Sounded like a terrible idea.  And yet . . .

“You really think it would help?” 

Karen started talking, slowly at first and then with increasing excitement, about the benefits of putting up the barre . . . and I let myself get swept in.  I could see it too---the physical therapy sessions of pulling to stand, then creeping sideways with both hands holding on, eventually to learning to walk with only one hand on the barre.  Maybe even taking steps backwards?  Sure, why not!

Amid this animated conversation about the impressive physical feats that she would undoubtedly accomplish, if only she had a ballet barre, Maya sat, a bewildered 18 month old lump.  A relatively new master of sitting and slow crawling, she wasn’t showing any inclination to stand up, let alone walk.  

I envisioned the ballet barre and subsequent wall wreckage and thought to myself, Well if that’s what she needs to learn to walk then we’ll just have to put it in, walls be damned.  “Interesting idea,” I tell Karen, “let me think about it.”  We’ll see her again soon enough, in two days she’ll be back for another PT session.

The day wore on and I thought about it.  I rolled the idea around in my head while making dinner, cleaning up, putting Maya to bed.  I didn’t mention it to Dave, who would ask a lot of questions and then taint my thought process by adding in his opinion.   There was a little voice in my head saying Don’t do it.  Don’t get your hopes up, and I couldn’t see where it was coming from.

Then I started straightening up the apartment, and I saw.  Oh, I saw.

First, on the kitchen counter, I saw the rice bin.  Literally, a bin filled with rice, hiding a handful of buried toys.  The rice bin had initially taken up residency in a corner of the living room, bringing with it the promise of sensory stimulation.  Touted by her occupational therapist as a possible solution to the fact that Maya’s chubby little hands tended to ball themselves up into tight fists, we were going to rub her hands through the rice.  Her fingers would open and she would paw through the rice in hopes of finding buried treasures, if only we had a rice bin.  So we got one. 

Did she unclench?  Well, a little, I guess.  Long enough to grab a fistful of rice and shove it into her mouth, causing gagging and tears and some panic (the first two from her, the last one from me).  She learned that use a quick slide of her balled fist across the rice would send a hundred little grains skittering across the wood floor.  We kept at it occasionally, but threat of another mouthful of rice combined with the sharp little grains that lingered and stabbed my unsuspecting bare feet for days after a rice bin session outweighed any inklings of progress.  That sucker was just waiting to be dumped down the garbage chute.

I walked toward our bedroom, picking up a loose sock in the hallway, and saw the ball pit.  The red-and-blue-and-yellow inflatable ball pit (big enough for one adult & two children), filled with 200 plastic balls.  Well, not quite 200, as they were constantly on the escape, rolling under dressers and bookshelves, joining the scattered rice in dark corners.  The ball pit was a gift from a therapist, arriving with the promise of increased proprioception (awareness of your body) and sensory stimulation.  She would wiggle among the balls, and they would press on her body and give her feedback (“you’re lying down!  you’re rolling and applying pressure to your right side!”) and her muscles would respond.  She would make a lot of progress and be stronger and more balanced and have a lot of fun too, if only she had a ball pit. 

The day that it arrived I inflated the ball pit and filled it with balls, and I picked Maya up and whispered excitedly to her about going to play in the balls.

“Oh my goodness, what fun!  You can sit in here and play with the balls!” I lowered her carefully, the sea of plastic balls parting and plonking as her weight shifted them around.

She looked up at me, eyes widening.  She stiffened, and fell backwards.  A sea of balls rolled up over her neck and arms, threatening to swallow her entirely.  She started to wail.

Not exactly what I had hoped for.

Subsequent tries were less tear-inducing, but not exactly progress filled, either.  Don’t get me wrong, we eventually had fun with the ball pit, but I didn’t see any direct developmental fallout.  The balls were fun, but that was about it.

The small anti-barre stirrings were getting stronger.

I threw the sock in the hamper and got changed, trading jeans for yoga pants, and headed to the living room.  Dave sat on the couch, typing quickly on his laptop.  The tv was on, but he wasn’t watching it.  I picked up stray board books and tossed them into Maya’s book bin, gathered the plastic farm animals and stuck them in their appropriate plastic container.  Stuffed animals went into the big wicker basket.  Our living room was a great divide---computer saddled adults on the couch to the right, children’s toys and debris on the giant red foam mat (a birthday present, special ordered from a therapy warehouse, to cushion Maya’s falls, which tend to be hard) to the left.  With the smaller stuff cleared away, I turn and eyed the trio of large gym cushions.  Dave kept typing.

The gym cushions were a discovery on Craigslist---an amazing deal, a set of three for half the price of what one mat typically sells for.  They were old but in great condition, and big—each coming up to about knee height---a large blue square with a tunnel shaped cut-out, a green mini-staircase, and a red ramp.  We had to have them.  Winter was coming and we wouldn’t be able to use the playground for physical therapy anymore---these mats would be perfect for learning to climb, balancing, and motivation.  She would be climbing up and down the stairs and sliding down the ramp in no time, if only she had these gym cushions.   When Dave arrived home from work that night I breathlessly handed Maya over to him and said “I have to drive downtown to buy gym cushions---the seller is holding them for me until nine---bye!” and rushed out the door.  Two hours later I returned, carrying each one in triumphantly (with Dave applauding), trying not to notice that they looked kind of large and clunky in the middle of our living room floor. 

Maya loved them.  She loved hitting them and smushing her face into them.  Putting toys on them and crawling through the tunnel and licking them.   They were a welcome addition, breaking up the boredom of being trapped inside during the winter months.

But they didn’t make her stand.

And they didn’t teach her to climb.

And they really were big and cumbersome, which I was reminded of every night.  Trying to stack them into the corner of the room was no small feat.  It often took more than one try to get the balance just right, and create the gym-mat-totem-pole that reached my eye level.  Dave had stopped typing.  I took two steps back, willing the pile to not fall over.  It stayed.  I clasped my hands over my head victoriously.  Dave laughed, and resumed typing. 

I sank into the couch and pulled my computer from the side table onto my lap.  I clicked my way through email and Facebook, paying only the slightest attention to the screen.  I did a mental inventory of the other therapy-based stuff that we’ve accumulated.  Oral motor tools fill a drawer in the kitchen, along with modified spoons and cups for kids with feeding disabilities.  A child-sized walker waits in Maya’s closet, along with walking wings and outgrown orthotics.  A stretchy blue therapy body suit sits in her top dresser drawer.  Even her toys, toys that plenty of typical children have, were purchased with ulterior motives---this piggy bank will be great fine motor practice, this gumball machine will be great for crossing midline to deposit the balls in the top of the machine. 

Not often do we just think hey, let’s get this—it looks fun.

And that’s ok, I think.

I don’t have any issues with getting things that look fun and will (maybe) be helpful.   The ball pit and the gym cushions were nice additions, even though they didn’t yield any miraculous results, because they’re also fun. (The rice bin?  Well, I could have done without the rice bin.)  But I can’t, I won’t, pin my hopes on things anymore.  I’ve realized now that there is no thing that is going to rock our world.  There’s not a thing that will help Maya to suddenly catch up.  We will never look back and say “Thank god for that ballet barre---she wouldn’t be walking today if we hadn’t installed it!”

The therapists haven’t gotten there, though.   They think of the limitations of our environment (like the absence of a ballet barre) and become fixated.  Karen will mention it many times, I know.  And why bother to burst that bubble?   Her belief that the lack of a barre is holding us back just shows how much faith she has in Maya---“Oh, this strong girl would surely walk faster if her parents would install a barre.”  Yes, she should keep thinking like that.

I will decline the barre project, likely blaming it on Dave, who doesn’t have to face Karen three times a week like I do.  Let him be the bad guy.  “Oh, Dave really doesn’t want to rip up the walls,” I will say, “maybe instead she can work on the gym cushions or along the sections of fencing that we put up in the living room for her to practice pulling up on?”  And she will relent. 

And a year later, with a lot of work, but no ballet barre, Maya will walk.  


Maya, 20 months, on the first day that she pulled to stand 
(next to one of the giant gym cushions, on her side of the living)

3 comments:

Jennifer Gentile said...

Such a great post - I had tears in my eyes remembering all the must have items we purchased for Joe. When we moved several years backed I remember the sick feeling in my stomach as I found many of his old "toys" - it was such a bitter sweet experience. In many ways I was looking through his old favorites - but instead of joyful memories I could only remember how sad and scared I was all the time. I too was very much under to clock to "fix Joe" before he was 3 - than before he was 5 etc. now I have much more peace and acceptance and I can almost look back without the sting - but it would be a lie if I said reading this piece didn't sting a little! We must have coffee together soon!

JenGentile.Com

Anonymous said...

I am a first time visitor from Love That Max..but after that post I will definitely be back! Wonderfully written with heart and humor! I hadn't thought about that Mom I used to be in years! (We had the rice, the beans, the thera-putty, the ball pit, the swings, the crazy expensive picture-making program for a communication book, sign language dvds, a therapeutic indoor trampoline ...the works!) Some were items were great (and my younger two have sure enjoyed them all), some were a huge waste, but none were "the answer" I was hoping for back then. Learning to support enthusiastically without sabotaging your own emotional well being is one of the hardest lessons. The ironic part is, once they are ready to take that next step...physically, developmentally or otherwise...there is no special equipment needed...in fact, just try standing in their way!

Anonymous said...

You and your family are aMAYAzing!

I am also a first time visitor. We've just started researching AAC devices/apps for our 2 year old. Your blog was recommended by one of the programs that's helping us do so. I am so glad they pointed us in your direction. Thank you for sharing your family's stories. We can relate . . .

Big cushions for climbing - Check!
Baby walker - Check!
Walking baby . . . Not yet.
Diagnosis? . . . Nope. And perhaps never.
Lots of love, determination, hard work, grit, tears & laughter - Always.

Thank you for making us feel more understood, and less alone. We can truly appreciate all you do for/with your family, and we thank you for sharing your experience and humor with ours & so many others.