Roanoke, Week 2: I Did It!

img_2162During one of Solly’s therapy sessions this week, his therapists got really excited when he used his right hand to move a bead across a track, so they cheered, “Solly, you did it!”

And Solly replied, “I did it!”

Now, I haven’t heard him say this exact phrase yet, but I completely believe that he said it. I’ve long thought that Solly understands everything we say to him and part of his sensory issues (i.e., excessive biting, throwing his head back, flailing his arms) is simply him expressing frustration that he can’t find the words to respond to us. It’s like the words are in his head, but he struggles with which word to choose and how to get it out. Continue reading

Roanoke: One Week In

Hello from Roanoke!

One week ago, we packed up a U-Haul and drove 6.5 hours (well, 8 hours, really, thanks to Bea’s insistence that we stop every hour to get out of the car and run around) to scenic Roanoke, Virginia. No, we didn’t move here – at least, not permanently. We’re continuing our nomad lifestyle and have uprooted our family – dogs included – for 4 weeks so Solly can participate in a constraint intensive therapy at the Virginia Tech Carilion Research Institute (VTCRI)Continue reading

There’s No “I” in Team

Parenting a kid like Solly has taught me more than I could have imagined. I mean, I could probably write a book simply listing everything I’ve learned, from medical terms to therapy movements to assistive technology and more.

My biggest takeaway so far is this: it’s ok to disagree with a doctor, specialist, therapist and find someone who is a good fit for your child.

Growing up, we always heeded our doctor’s advice: when I dislocated my shoulder, we took an X-ray and I went to physical therapy; when my adult teeth started growing crooked, it was three years of braces for me. Simple and straightforward. However, what I’ve found over the past (almost) four years is that medicine, particularly when you’re dealing with a unique organ like the brain, is often times more an art than a science. There’s no one correct way to rehab that unique organ.

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Miss Laura teaching us how to handle Solly so we can encourage proper body positioning

It took me over two years before I realized that not all doctors and therapists are created equal, especially not for a medically complex kiddo like Solly. Part of the delay in learning this is because we were insanely fortunate to be paired with the perfect physical therapist less than one month after Solly was discharged from the NICU. Her name is Miss Laura, and she still keeps tabs on Solly’s progress even though we haven’t seen her since we moved away from Washington, DC. What I’ve found in physical therapy is that many institutions approach rehabilitation by setting goals for gross motor skills and then moving a child towards those goals even if they aren’t ready for them. And what I mean by this is a common goal for Solly in the early days was sitting, holding quad position, walking, etc. But, often times, he wasn’t ready for those goals and would grow frustrated with therapy sessions because the therapist was essentially forcing him into and holding a position that he wasn’t physically ready to do. Continue reading

An Addendum: Walking in Target

Moments after I published yesterday’s blog post, I received the following text message from Solly’s nanny who was with Solly at Target. I thought it was too cute to keep to myself:

If you ever want to feel better about life, take Solly to Target in the morning. He was mesmerized by a solder, saw his Target BFF (the lady standing next to him in the photo below), and he fell in love with a man who encouraged him and gave him knuckles. Not to mention, every person that walks by him says hi and smiles at him! Oh, and this little kid came up to him and started talking to him! It was so adorable. Literally the whole store walks by and encourages him.

Like I’ve said before, the best way to start a conversation with someone who has special needs is to simply say “hi”. Or, you know, cheer and give words of encouragement when you see a cute kid working really hard to walk in his walker. Inclusion is awesome.

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A Field Trip

One of the biggest obstacles we currently face in Solly’s journey to walking is motivation. Solly CAN walk in his gait trainer – in fact, he walks quite quickly if he sees something he wants – but he has to have a solid reason to walk. That reason changes quickly. Lately, his motivation has been helium balloons, golf clapping and cheering, and high fives, however, we struggle to constantly come up with things that excite him enough to walk.

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We love Target!

So, instead of finding novel objects or cheers to motivate him, Nanny Jen discovered that taking him new places might be the trick. Last week, before his weekly OT appointment, she popped his Rifton Pacer in the trunk of her car and carted Solly over to Target where she plopped him, in his gait trainer, at the entrance of the store. There were new sights and sounds to motivate, not to mention people to impress. Solly spent a full hour walking and exploring the store. He still needed some cheering to get him going (a few shoppers stopped to root him on), but little things like the dollar section and a table with folded t-shirts piqued his interest enough to move his gait trainer along.

Just yesterday, we took another field trip over to our local park, where there is a paved pathway that’s perfect for walking. With his hat on backwards and Nanny Catherine cheering him on, he easily strolled around the park.

Our motivation issue has been solved, for now!

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Cute Kid at the Park