In the three months since we got home from our four week intensive at Virginia Tech (you can read about this intensive here: week one, week two, week three, and week four), I’ve been ruminating on what I learned throughout this intensive. Here are the top three things that have really stood out to me: Continue reading
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. And she loves her brother to pieces.
Well, this happened last week.
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.
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:
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
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.
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