"I Can't Do It": K(no)wing Your Child's Limits

After almost four years on this SB journey, Liam finally uttered the words I've been dreading: "I can't do it." It stopped me dead in my tracks. I immediately responded to his frustration -- we had been working (again!) on trying to get him to pull his walker forward, after taking steps without wearing his RGO walking brace -- with the old cliché about trying again (if at first you don't succeed), and then I very enthusiastically said something about how "we don't say can't in this house!"

But if I'm being totally honest, his words rattled me. Shook me to my core. I sat back and wondered if maybe he was right. Maybe he couldn't do it. Maybe he couldn't move his walker forward, while simultaneously using it for support. Maybe his walker would only ever be used as a support for standing. Maybe this was as far as he was going to get in the walking process. Maybe this was as much as his body would allow. And for a little while I was devastated.

But then, eventually, I got to thinking about how long it took to get him this far. I thought about how I strapped him into his RGO walking brace, and walked him around our house every freakin' day, for over a year before he would finally take steps on his own. I thought back to when I was trying to teach him how to crawl, and I would follow behind him, moving one arm, one leg, one arm, one leg, for what seemed like forever. I remembered how everything Liam has accomplished, every milestone he's reached, he's done in his own time, not mine. 

So, for now, I say NO. No, we will not stop trying. No, this isn't as far as he goes. We will try, and then we will try again. 

Precious Progress: Liam's First Year in Kuwait

You guys! Can you believe it's been a whole year since Liam and I moved to Kuwait? I guess time really does fly when you're having fun; or, more accurately, when you're locked in a basement apartment, in Kuwait, with a three year old. 

June 2012                                              June 2013

One positive aspect of our current situation is that Liam and I have A LOT of time to work on things. And I no longer have any distractions: no thesis, no impending international move, no SOCIAL LIFE. Sigh. (Okay, so I don't know if occasional playdates, walks with a friend, and a monthly girls' night out constitutes a social life, but it was more than I have now). So, like I said, LOTS of time for Liam. It has definitely had its advantages, though. Here is a rundown, with lots of pictures, of all the progress he's made in the last year:

He took his first steps! After a year of making his Mommy walk him back and forth in his RGO walking brace -- imagine doing squats and working out your arms for an hour straight and you'll know what it was like -- Liam finally decided he was ready to take steps by himself (and let his Mommy off the hook):

September 2012

And now he can stand up and take steps without wearing his RGO, and has developed some amazing upper body strength along the way:

December 2012

January 2013

April 2013

Look Mom...one hand! June 2013

Check out that upper body strength!

One of the last things we worked on with our wonderful physical therapist was getting Liam to climb onto something and get himself into a seated position. Two days before we moved out of our house in Illinois, I found Liam sitting on my suitcase. I said "get off my suitcase, Liam" and then quickly realized he had actually managed to do what we'd been working on: "Uh, wait, I mean good job! Woo-hoo! I'm so proud of you." He really got it down once we moved:

August 2012

He also learned how to stand up to (and climb on) the coffee table. Needless to say, the coffee table no longer lives in our living room:

Early August 2012

August 2012

Late August 2012

He started doing yoga. Okay, so it's mostly some stretches and downward facing dog, but he's really good at what he can do:
 

September 2012

He learned how to climb onto the couches all by himself. He needed a chair to help him out at first:

August 2012

But we still had some work to do. Don't worry -- eventually he learned how to climb OFF the couch as well:

August 2012

Six months after we moved, he really started making progress. I think our visit home did the trick. Seeing his cousins standing and walking was major motivation for him. And in typical Liam fashion, he started doing things when he decided it was in his best interest to do so. When we first arrived in Kuwait, he couldn't even climb into this little chair by himself. Six months later, he's using it (and the couches) as his own personal jungle gym:

December 2012/January 2013

He's also started standing up to things and taking steps forward: the t.v. stand, couches, and his slide: 

May 2013

And speaking of slides... We bought a little baby slide when we first moved here, and worked for about a month until he could stand up to it:

August 2012

And now check him out! He's moved on to a big boy slide! He pulls himself to stand using the slide, takes a few steps forward, and slides down on his belly. He even puts his feet on the steps and uses them to push off. How's that for progress?!

June 2013

He has mastered the alphabet and started spelling and writing words, some more appropriate than others:

I believe this to be a personal attack. :)

Father's Day 2013

He can read, like, really read.

And recently he surprised me by sitting at the kitchen table. I was seriously surprised. Like, looked-all-around-the-house-before-I-found-him surprised. When I was making dinner, he climbed up on the chair and waited patiently for his dinner. He must have been hungry:

He has started talking, even in front of Daddy. And he's becoming more and more comfortable around other people. When people ask him what his name is now, instead of putting his hands in his mouth and saying "eh!" he (very confidently) says "Liam." To be fair, though, one thing I've learned is that most adults DO NOT respect kids' personal space. Liam does not appreciate this, although he's learning how to better deal with it. Lately, though, he's becoming friendly, a little too friendly (i.e. tries to give kisses to random people in the grocery store). And just last week, the cashier at the Sultan Center (Kuwait's Wal-Mart) said "he's a good boy this time, yes?"

What a difference a year makes! I am so proud of my baby, though, it's becoming increasingly clear that he's not a baby anymore.

I can't wait to see what the future holds for this remarkable little boy of mine.

"No, No, No": Liam's Listening Skills (Or Lack Thereof)

When we went back to the States six months ago, for a visit and doctor appointments, I realized something very important: Liam doesn't know how to listen. Like, really doesn't know how to listen. 

Part of this, I think, has to do with his extreme stubbornness (I have no idea where he gets it from), and part of it probably has to do with the fact that he never really learned how to listen. I remember reading an article awhile back that said it often takes kids with mobility issues longer to learn what the word "no" means, which makes total sense if you think about it. From the moment babies start crawling, they hear the word "no." Constantly. Because Liam was 18 months old by the time he started army crawling, and because our house was set up for him perfectly, I never really had to tell him no. Seriously, I think he was almost two years old by the time he heard the word.

I also think the fact that I am with him 24/7, and know what he needs before he even asks, played into it. One time Liam's developmental therapist asked me: "what does Liam do if you don't know what he wants/needs?" I thought about it for a minute and was at a loss: "Ummm, I don't know. That's never really happened before."

When we got back to Kuwait, I knew something needed to be done, so "Operation Time Out" was put into full effect. The problem? Time Outs don't really work for Liam, something I realized rather quickly. He would do his (3 minute) time no problem, but would then continue not listening, which landed him in time out constantly. Time outs definitely weren't helping, and they were making my life miserable.

I also tried slapping his hand, but only when he did something that could hurt him (i.e. his obsession with a power strip, which he somehow always managed to get at no matter how many times I blocked or hid it). The problem? After I would gently slap his hand (okay, so it was really more of a tap), he would look at me, slap his other hand even harder, and yell: "no, no." Apparently, Liam is better at disciplining himself than I am. 

So what does works for us? This nifty, little reward chart:

I can't tell you how instrumental it has been in helping Liam learn how to listen. I was sort of at a loss after the time outs didn't work, and realized I needed to think like a teacher. What would I do if I had a classroom full of preschoolers or kindergartners who were having trouble listening and following directions? I'd get a chart with stars, of course! And it has worked perfectly. I can't figure out which Liam enjoys more: getting a star every time he does one of his "big boy chores," or getting to pick out something from the toy chest (i.e. a bin filled with bath toys, books, and puzzles), after he accumulates a certain number of stars. His latest reward -- Rub a Dub tub stickers -- was a big hit:

I also make it a point now to put Liam in charge of things like bringing me his cup when he wants a drink, putting his shoes away, and other little things of that nature. And he LOVES helping me put away groceries. For awhile, I think, we were so stuck in our daily routine that making him do these things never even occurred to me. Not to mention, it's usually just easier to do it myself. Even though sometimes I hate not doing things for him, because obviously when your main mode of transportation is crawling or scooting on your butt, carrying things can be a little more difficult, I know it's good for him. And I KNOW learning to do things for himself will benefit him in the long run. 

On Milestones and Expectations

For special needs parents, milestones can be a tricky thing. We learn to adjust our expectations at the very beginning. We learn to accept and adapt. For me, it was over the course of the third trimester of my pregnancy.

It's worth saying that milestones are a tricky business for most parents, whether or not they have a child with special needs, as we are all prone to comparing ourselves and our children to others. The only difference is that we have professionals come into our homes and actually put our children's "delays" on paper. I have known and read about parents who have been completely devastated by these evaluations. Totally understandable. But, for me, these evaluations never carried much weight. One of the reasons may be because our wonderful therapists prefaced each evaluation with advice like "the numbers don't really mean anything" and "we know Liam is making progress whether the standardized form says so or not." To be completely honest, I couldn't even tell you the numbers and percentages that were written on those evaluations. Of course I'd read them, but only to remind myself of the goals we wanted to work on. I always knew Liam would do things in his own time. And that every little thing he learned to do was, at one time, something we thought he might never be able to do.

Even though I never worried too much about those "delays," I am still beyond excited about his extraordinary reading skills. That's right: my 3 1/2 year old can read. Like, really read. I am especially excited (and a little relieved) given that kids with Spina Bifida and Hydrocephalus often have trouble with reading comprehension and are at a higher risk for learning disabilities. This may be a different story in the future, of course, but, for now, he doesn't seem to be experiencing any of these issues. We've been working on letters and spelling for the past six months or so, and really started working on what sound each letter makes in the last month, and just recently he started reading the starfall* readers on his own.

Click here for video of Liam reading his first book: Zac the Rat.

Of course, Liam has been in love with books since the very beginning. The bookcase was his first stop when he finally learned to army crawl at about 18 months old. At first, he could only move backwards, but he still always made his way to the bookcase:

And when he learned to crawl forwards, he would sometimes sit at the bookcase for hours, just paging through the books (as you may well know, he is a bit obsessed with letters):

 

 

And, in case you're wondering, I didn't pick the books out for him. My friend once asked me: "do you pick out the book you want Liam to hold and then take a picture?!" Nope. He just has really good taste in books. 

And sometimes I'd find him quietly sitting by himself, reading a book:

He's got the whole writing thing down, too (see video below). I am so proud of my baby, and can't wait to introduce him to the wonderful world of E.B. White: Charlotte's Web, The Trumpet of the Swan, and Stuart Little. I know, I know, I am a total nerd.

Click here for video of Liam writing his words.

*Starfall: we started using the starfall.com site a couple months ago. As I mentioned in this previous post, I'm trying to get Liam as prepared for preschool and kindergarten as I possibly can, and the starfall site has been an invaluable resource. We started with reading the books right on their website. The books are animated and even sound out each letter as you read. And it's free! Here's the link that takes you directly to the books. We also went on amazon and bought the Starfall book collection (they're the same as the ones online), since Liam loves actual books, and can then work on reading when I'm busy doing something else. Geeze, I feel like I've been doing amazon reviews lately, but I figure I might as well let you know what works for us, since it might work for you, too!

Step by Step...with video of Liam walking!

9.27.12

You did it. You finally did it! We have been waiting for this day for over three years. Three years! Three and a half years since those gut-wrenching words were uttered, words that changed everything: we’ve found some deformities. Today, what seemed like just an ordinary Thursday, you did something we once thought was impossible: you took your first steps.

Step by step we’ve made our way on this journey together – this journey that began almost four years ago, with a very anxious soon-to-be Mama staring in disbelief at a screaming YES glaring back at her. Almost four years ago since making that very long-distance phone call to Daddy saying, I have to tell you something, but I’m not going to be able to say the words out loud. Just one month shy of your third birthday, and you did it.

My heart was so full tonight that my body simply couldn’t take it. As I lay in bed, I heaved and heaved thinking about the gravity of what you had accomplished. I sobbed reflecting back on those first few months after receiving the diagnosis, when I couldn’t even look at a little boy on a bicycle, or a baby standing on his wobbly, little legs without feeling a tightening in my chest. Without feeling like I was suffocating. Guilt at that time was a tangible thing. Anger was palpable. My body had betrayed me.

It wasn’t until first stepping foot in the spina bifida clinic, when you were three weeks old, that I truly realized the severity of what spina bifida and hydrocephalus meant: wheelchairs and braces and catheters and shunts and surgeries. All of the books and articles I had read during the second part of my pregnancy couldn’t have prepared me for what met me that day: spina bifida at every age. It was like your entire life flashed right before my very eyes. I felt the wind knocked out of me walking into the clinic that day. Your Auntie Maura somehow sensed what I was feeling, and simply sat quietly next to me, while I tried to catch my breath before making my way to the front desk. But I didn’t know then what I know now.

And now, here you are, standing on your own two wobbly legs. And here I am, knowing what I didn’t know then: that you are absolutely, positively who you were meant to be. You are perfect and bright and magical. You are an old soul in a young body. You have taught me and Daddy and our family more than we could have ever learned without you in our lives. Do you know that when your cousins play house one of them pretends to be a kid with spina bifida? Yep. It’s true. You have made clubbed feet and braces and shunts normal, which in turn has taught them to accept other kids who are different from themselves. You have changed the definition of disabled for us. Spina bifida doesn’t define you, it’s a part of you. Just another facet of the remarkable human being that you are. It has been a long three years, filled with therapy and doctor appointments and surgeries, but you did it, my angel baby. You did it.



***Update: I was finally able to get a video of Liam walking. He typically moves a bit faster and takes larger strides, but tends to get a little camera shy the second I hit Record. He has made even more progress, since taking his first steps back in September. When he first started walking, I had to hang on to the back of his RGO*, in order to help support him, and now he is able to rely completely on his walker to balance himself. He has also been standing between couches and taking small steps, without wearing his RGO. We are so proud of our Liam!
*Reciprocating Gait Orthosis -- the leg brace he wears that helps support him as he walks.

Click here for video of Liam walking!

And a few pictures for our friends not on Facebook:

Working on standing & taking steps without his RGO

Standin' around...because I can!

Someone likes to wear underwear on his head...

 

Liam's Golden Birthday

Check out what we bought Liam for his third birthday! Can you believe it!? I think I’m still in shock.

If you would’ve told me that this baby boy would be sitting on a bicycle one day, I never would’ve believed you. Side note: before you spend too much time staring at this next picture, I’ll just go ahead and let you know that, yes, those are sixth fingers on each hand. He had them removed when he was a few months old. I show this picture often, because I think it really captures just how far he’s come, and people always look at it for a long time. A little too long. I used to think they were marveling at his progress, but now I’m pretty certain they were trying to make out what was going on with his fingers, since they all inevitably asked the same question: “is that a sixth finger!?” 

Our little boy, who was born paralyzed from the ankles down, with clubbed feet, one dislocated knee, and two dislocated hips, is learning how to ride a bike! In typical Liam fashion, he is exceeding all of our expectations. 

We still have work to do, of course. The good news is we’re one step ahead of where I thought we’d be. When I ordered the bike, I bought two packs of Velcro thinking I would have to strap his feet to the pedals somehow, and he hasn’t needed it. He does need to learn how to get on and off the bike by himself, and we’re working on teaching him how to pedal using his feet and legs. Currently, he gets his feet on the pedals and uses his hands to roll the back wheels, like a wheelchair, which is totally genius, but not how we want him to do it.

During the month leading up to his birthday, we worked on learning how to pedal a bicycle by getting on our backs and pretending like we were riding a bike. He got that down quickly, so I am convinced it won’t be long before he is zooming around the apartment.

When we first received the diagnosis, not being able to ride a bike wasn’t even on my radar. Because we found out about the spina bifida only a few weeks after the magical 20 week ultrasound – you know the one where you get to find out the sex of the baby – we already knew we were having a boy. So for almost three weeks, DeMarko and I had conversations about our little guy being a wrestler, and doing all sorts of other “boy” things. But riding a bike never came up. It wasn’t until weeks later, when I was on my way to work one day, that I saw a little boy riding a bike. It hit me like a ton of bricks: my little boy would never ride a bike.  It seemed like everywhere I turned, I was taunted by things he would never be able to do. And now look at him. Just look at him. So, you know what, I’m not going to count out wrestling either. If Liam has taught me anything, it’s not to count him out. Not to underestimate him. Come to think of it, he does have some amazing upper-body strength. And he is really flexible (see picture below). Sounds like the makings of a perfect wrestler to me.