Tag: parenting

A Little Stroll

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When we got home from NAPA Center three weeks ago, I tried to make more of an effort to have Sol spend some time in his gait trainer each day.

When I say “make more of an effort”, that generally means that I’m successful maybe every few days because, let’s face it, if I were to do every activity that every single one of Solly’s therapists want me to do at home with him, we’d have enough activities to fill up 54 hours in one day. But, we’ll save the topic of “Mom is medical coordinator, researcher, therapist, advocate, all-while-trying-to-be-Mom” for another post.

While chatting with Jennifer, Solly’s PT at Full Circle Therapy, during last week’s hippotherapy appointment, I told her that we were struggling to find something at home to motivate him to take steps in his gait trainer. She suggested that we allow Solly to have alone time while in his gait trainer so he can work on figuring it out on his own. So, we took her advice and starting last week, for about 30 minutes before dinner, Solly would spend some time simply hanging out in one of his gait trainers. For a couple of nights, he’d shuffle forward a little bit and get stuck, so I’d adjust him and let him hang out so more.

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Living in the Past

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I try not to be a dweller. I like to live life looking forward, basking in positivity and finding the good in any situation. Anything that has happened occurred simply to mold me into the person I am today, so there’s no reason to have regrets and worries about the past.

This tends to be my attitude towards any event, except for the day of Solly’s birth. Even three years later, thinking back on that day and the following month in the NICU puts a wrench in my stomach and tears at my heart. It’s hard to revisit that time. I can’t even look at the blog posts I wrote while we were in the NICU. I just can’t. Not yet.

SollySmileHowever, when my sweet friend, Laura, asked me to share Solly’s story as an Inspirational Kid for her website Paisley’s Purpose, I knew I had to man up and revisit that time. Even if it could give solace to just one other Mama following a similar path, it would be worth it. So, in just over 1,000 words, I revisited those hard first days in our journey with Solly. The post goes into a little more depth than I’ve ever written about that day, so for those who are newer to our story, it might be worth a read. Read it here.

Lately: On Specialists and Therapies

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The other day, a neuromotor researcher asked me to send her a list of all the therapies we are doing as well as the specialists we regularly see.  With all the traveling we did and changes Solly went through in the last year, this seemingly simple request was not so simple! After our year of change, in my mind, we really pared down the number of therapies Solly did each week, but our schedule is still pretty full. The biggest difference is that we have more therapies that are fun for Sol and fewer that require him to sit still in a chair.

After racking my brain, here is the list that I sent her:

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Another Walk in the Park

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We struggle with motivation. I always get a little envious when I see other babies just sit and play with toys or get up and walk toward their favorite stuffed animal. Bea would do just about anything for an episode of Sesame Street or for her Elmo stuffed animals. Nothing like this ever works for Solly. He’d rather just sit and chew on whatever is in his path than press buttons on a toy or play with a toy car.

This has made therapies – both in a clinical setting and at home – rather difficult. It’s impossible to work on Solly’s strength or functional movement if all he wants to do is hunker down and chomp on a puzzle piece. If a 3 year old doesn’t want to do the work and isn’t interested in anything that will trick him into doing the work, how can we make any gains?

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Whatcha Say

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“May I ask what he has?”

I blinked my eyes several times. Did I just hear the Starbucks barista right? Did she just ask me what condition my son has?

“Excuse me?” I said, with a smile.

“What does he have?”

“Oh, Solly? What does he have? You mean …….. He has CP,” I said quietly, nervously. I was hoping that’s what she meant by her question, not wanting to make her feel awkward if it wasn’t.

“Oh, CP! My oldest has Asperger’s. I’m a special needs Mom, too,” she replied. “Bye, bye, Solly. Come back, soon!”

This conversation was such a breath of fresh air that I literally skipped back to the car with my chai tea latte in one hand and Solly in my other arm.

When you have a special needs child, every outing has its share of stares. It used to bother the heck out of me and keep me inside the house. Now, I’m so used to it that I don’t notice, I don’t have time to dwell on it and, quite frankly, I don’t care if a handful of strangers stare at my obviously delayed and different child. However, one of the hardest parts of being a special needs Mom is feeling different and outcast from the general public, and the stares certainly don’t help. The problem, I’ve realized, is that unless you are a special needs family, you simply don’t know what to do or say when you see a child or person who’s a little bit different. And, instead of saying something to that family or child, you might wonder “what’s wrong with that child” and worry about what to say and decide it’s best to say nothing at all.

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