This summer was the first time Jack has ever gotten to stand up and hug his big sister thanks to his walker!
Hi friends! This post has been on my heart and bouncing around in my head for several weeks. As most of you know, Jack’s medical journey has never been straightforward nor simple. One of the worst parts of having a child with a brain injury is the “wait and see”. When Jack had his 2-year-old MRI and follow-up with Neurology, several specialists came in to see Jack (because it is still so shocking to look at his medical history and then see him today). The good news is that Jack’s brain injury did not seem to be progressive so his Neuro diagnosed him with CP. They all agreed that Jack needed some extra help meeting his milestones and wrote him a prescription for a walker. This was at the very beginning of July. My hope was to have Jack’s very own by the time I wrote this, but this still has not happened. We are lucky enough that Jack’s PT and therapy service had an extra posterior Kaye walker for us to borrow. However, it is old and the wheels are terrible. Every time I see a kiddo in a walker with good wheels, I seriously get green with envy. haha! My husband has a great job and we have good insurance so this is absolutely INSANE! The prescription for the walker was written and submitted to Numotion in JULY of this year and it is the end of OCTOBER and I am still fighting with insurance and Numotion to get my child a device that has given him such an incredible quality of life AND helped him progress/meet milestones that he was previously stuck on. Literally, the walker is at Numotion and our insurance company is questioning ONE ACCESSORY on the walker. The fight for Jack’s quality of life is so soul crushing sometimes. That’s where we are at with Jack’s very own walker, but on to more positive things…
I want to give Jack an accessible life. I want him to do whatever he wants to do. Like all families of kids with complex needs, we go through ups and downs. This summer was an absolute LOW for us. Jack was right on the verge of turning two and had hit a wall around May and really stopped progressing physically. He became increasingly agitated and everything made him angry. He was lashing out by throwing himself backwards, kicking, flailing, biting, and screaming. It had started to feel like every second I was fighting a battle that I didn’t understand. Jack wasn’t even trying to communicate; his instinct had become to scream. We went to Orlando for a long weekend in June and Jack stayed in the hotel the entire time (Cliff and I took shifts with he and Rowan) because he was so out of control. I was trying so hard to understand where all Jack’s frustrations were coming from. It started to become obvious that Jack was stuck. He is a pretty big kiddo and was around 27-28 lbs this summer. We were completely out of infant walkers that could hold him and help him learn to use his legs. One day I took Jack out to play at a local spot and I watched him repeatedly get upset as kids would walk and run past him while he was stuck in one spot and could maybe pull to a stand. He was screaming and hitting in their direction. I know I said he wasn’t communicating well, but this seemed pretty clear.
I was super nervous, but all for it when Jack’s neuro team/PT mentioned a walker/gait trainer. Jack’s CP has always been a little different. I would look at other kiddos and wonder why the same things PTs used for them weren’t working for Jack. To be clear and specific, Jack’s CP is called Hypotonia. I will never forget how many times he was referred to as “floppy” when he was an infant. Floppy, like puppy ears. I remember getting sassy with the first PT in the hospital who told me that Jack had poor head control. I said, “he’s 10 days old so why would he”?? In the beginning, I wasn’t quite sure what advocating for Jack meant. So I would stick up for him and get angry when docs/nurses/babies can’t wait/etc. said that Jack had CP when he was so young. But now I know that the diagnosis doesn’t matter and in some cases the diagnosis is the ONLY WAY to get the services and equipment your child needs. Here’s a little more info on Hypotonia:
“Hypotonic cerebral palsy is a form of the disorder marked by floppy (overly relaxed) muscles; hypotonic CP is rarer than the spastic forms of the disorder. Hypotonic cerebral palsy is hypotonia which is caused by brain damage or brain malformation; it is generally congenital (present at birth), but an injury shortly after birth can also cause it. A child with hypotonia often takes longer to reach motor developmental milestones, such as sitting up, crawling, walking, talking, and feeding themselves. An adult with hypotonia may have the following problems: clumsiness and falling frequently, difficulty getting up from a lying or sitting position, an unusually high degree of flexibility in the hips, elbows and knees, difficulty reaching for or lifting objects (in cases where there’s also muscle weakness).”
Above describes Jack to a tee. Jack couldn’t sit up independently until he was a year old. And this was all he could do at that time. We finally felt like Jack could handle more therapies per week and his Neuro team really felt like he needed 2 PTs per week so we bumped up to getting 2 PT, 2 OT, 2 Speech/feeding therapies per week. We have been doing this consistently since Jack turned one. This is also why we live in a basement apartment at my parent’s house. Therapies are incredible expensive, we max out our policy’s allotted therapies by like April, and we don’t qualify for any assistance. But I could honestly care less because Jack’s quality of life is most important to me and early intervention is absolutely everything! I wish I would have had more foresight with the walker because I would have pushed for it much sooner. We worked on walking for so so long and Jack just wasn’t putting the pieces together and it became clear that his body/brain also physically couldn’t put the pieces together. I just wasn’t sure what to do for Jack at the time, but he showed me the way just like he always does. The walker was the way and this was obvious from the first time Jack got his hands on it. The independence the walker allowed Jack broke him free from all the frustrations he was feeling and we finally had hope again.
Jack has been borrowing his posterior Kaye walker for 3.5 months now and he has made so much progress. He started taking steps and is now even walking independently some! I cannot believe he hit this huge milestone after only having the walker 3 months!!! However, now that he is on his feet, we can also see where he struggles most. Balance, coordination, tone, motor planning, sensory struggles, and stamina are all daily concerns as Jack continues learning to walk. Jack still uses his walker often, however if we are in a small space or a space with lots of chairs/things to hold on to then I often won’t bring the walker in. I know life will be SO much easier when Jack gets his walker because the WHEELS will be perfect! You can think of Jack’s borrowed walker as the grocery cart with the weird wheel that keeps turning and slowing you down. This also means that mama has to do lots of pulling/helping when Jack’s in the walker. But that’s okay because those archaic wheels have given Jack his life back! I didn’t know how I was going to manage this summer because I was getting kicked, hit, and bit every single day by my struggling toddler. But now, we go everywhere and do everything because I can bring the walker and know Jack will have something (besides me) to support him.
I have so so so much to say about the walker, but I don’t want to drone on and on. So I just want to say PLEASE message me on IG or email me if you have any questions about this topic!! I could go on and on. The walker has also given us more PT activities to do at home where Jack can strengthen his core. We are about to transition to wall exercises and I will slowly take the walker away as he gets more steady. Super excited about this!
Lastly, I wanted to speak quickly on being in public with the walker. We have had mostly support and encouragement when out in public. However, my poor kiddo really struggles with sensory issues and once strangers start noticing him and talking to him, he shuts down. So this has been sort of challenging when we take the walker out in public. It’s big and bulky and of course you’re going to notice it. I don’t mind at all…and I encourage people to ask questions. BUT please remember that kiddos struggle with this sort of attention too. So stopping to speak may not be a great idea, but a kind smile and encouraging word as you pass is amazing! On the other hand, I have had a few misguided comments regarding the walker. I realize that Jack looks like a baby, but he’s 28-months old…he’s two, he’s a toddler. He doesn’t want to be a baby and is very aware of actual babies. Thus, when the father with the 9 or 10-month old infant says, “oh man if she had one of those, she would be gone,” it hurts my mama heart. I am usually pretty quick on my feet, but this time I was dumbfounded by this father’s ignorant comment. I hope his child never needs a walker. You know what is amazing, though? The other kids!! Most other kids Jack’s age love his walker and want to approach it and use it too. I think that’s great motivation for Jack and encourage kids to be interested and interactive. Yet, there are always embarrassed and flustered moms trying to drag their interested kids away from us. It’s okay! PLEASE encourage your kids to speak to and befriend kids with walkers, wheelchairs, etc. This is the only way we can truly be inclusive and normalize disabilities. Do not shy away from differences! Thanks for hanging with me, friends and contact me if there’s anything I did not touch on or you want to know more!!
We are so passionate about what this walker has done for Jack’s quality of life! We would love to see more brands using differently abled models to represent them. So we took a little road trip and went to Tennessee for a Changing the Face of Beauty head shot clinic. Inclusion and kindness matter more than anything so help us change the world! ❤