Special Needs Sibs are Special

When your first child has special needs, you question having a second child.

You worry if they too will have a medical diagnosis.

If typical, you worry about their relationship with your first child. Will they be resentful? Will they know how to play together? What kind of relationship will they have? Will they bond?

You worry about your own relationship with them – will I have enough time to devote to them, considering my child with special needs requires so much of my time?

We had ALL of these worries when we were planning for Solly’s little sister, Bea. Once she arrived, though, those worries started to dissipate. Bea is 100% typical. She’s a chunky, milk lovin’, Sesame Street obsessed 21 month old.ย And she loves her brother to pieces.

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Sweet Bea

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Solly’s First Day of School

Well, this happened last week.

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Solly’s First Day of School

After a sleepless night and crazed morning on my part, I woke up Solly, dressed him in an outfit that he’d picked out the previous week, and packed up his brand new school bag, then Mike and I took him to High Hopes in Franklin, TN. I wheeled him into his new preschool room, chatted with his teacher for a few seconds, and then tried to give him a kiss goodbye – at which point he quickly pushed me away because, you know, preschool boys are too big for kisses from their Moms.

And then it became official. Solly is a preschooler.

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Lately: Hippotherapy and Full Weeks

Y’all, it has been a week of crazy busy-ness. We have 11 Solly-related appointments this week alone and there’s really no slowing down until we go to Virginia Tech next month for intensive therapy. To say I’m exhausted is an understatement. Maybe the word “overwhelmed” more appropriately captures my state of mind right now.

But, enough about me. Here’s a quick update on Solly:

Last week, our beloved Nanny Jen captured some great photos of Solly at his hippotherapy appointment at Full Circle Therapy:

Have I mentioned how much Solly loves hippotherapy? This therapy has been amazing, not only because it works so many muscle groups at once and has made Solly incredibly strong, helping him to move forward in independent sitting and taking steps in his gait trainer, but also because it is a fun therapy for him. He acts like it’s play time and not therapy. Every time we hit the driveway for his hippotherapy appointment, he starts shaking and laughing with pure excitement. He cannot wait to sit up on his horse. I have loved horses for as long as I can remember, but having a child with special needs has introduced me to a whole new level of love for these animals. 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

Count Your Blessings

When we were on vacation, we received some news that isn’t great.

Don’t worry: Solly is healthy and happy and nothing about that has changed. I’ll write more specifics later, but, in short, we were notified by a specialist that Sollyย might not be a candidate for SDR, a potentially life-changing surgery that would permanently eliminate his muscle tightness. We have to do some legwork – a sedated MRI and a consultation in St. Louis – before we know the answer.

But, this post isn’t about SDR. It’s about how I deal with potentially bad news.

img_1821When you parent a medically complex child, you quickly learn that this life is an emotional roller coaster. One day your child does something amazing, something that doctors predicted he would never be able to do, and then the next day, his journey takes a step backwards – or, on some days, many steps backwards. As easy as it is to wallow in bad news and feel down about whatever that backwards step is, I’ve found that allowing those negative feelings to stick around is not only not productive, it also tends to rub off on Solly and Bea. If I choose this route, no one is happy and we remain at a standstill until I’m able to dust myself off and move forward. Continue reading