From my memory, here's how we ended up at the NAPA Center (a place that I consider a destination, or at least a big marker).
We got Kai's diagnosis of Spina Bifida very early on in my pregnancy. I enrolled Kai in physical therapy and occupational therapy (here's an article about the difference) as soon as I could after he was born. I chose to take him to CCS, the county-run clinic, as it was recommended by the hospital PT we saw soon after Kai was born. From what I remember, I was told CCS had the most experience with Spina Bifida, though at the time I confused Regional Center (the local early intervention program) and CCS a lot--to say I was overwhelmed at the time is a massive understatement. The clinic lost our paperwork, but we were finally able to start therapy when Kai was four months old thanks to our amazing PT consultant with Regional Center checking on the paperwork for us.
From my experience, this is what therapy was like 4months old- 2 years old:
◦ The meat of many sessions was my conversation with the therapist.
◦ Our OT told me about one family that would switch up which route they drove to the clinic b/c the child hated therapy so much, they could tell the car route and would get upset.
◦ My son did best if I was holding him or not in the room, otherwise, he looked to me to help him escape the experience. He cried through the entirety of many PT sessions. His PT was relieved when I offered to stay out of the room.
◦ Even after a year of seeing them regularly, Kai was somewhat happy to see his OT each week, and barely tolerated going to his PT.
◦ I got the therapists' email addresses when Kai was about 20 months old. Therapists sometimes respond, sometimes take weeks to respond, and often aren't very helpful in their response.
◦ A vibe of "we have to do this," like therapy is a forced chore or plight requiring discipline to "just get through" it. I hate to say I lived this attitude for way too long.
◦ An energy drain.
◦ It's a rule that photos are prohibited for privacy reasons.
◦ I'm not supposed to text therapists for privacy reasons. My main method of communication was to call the front desk.
◦ Therapists imparted "shoulds" and "to-dos" with minimal individualization or regard to what's practical or specific for our family. Therapists felt like bad teachers telling us what to do, shaming us for not doing it.
◦ Therapists got equipment out at the beginning of our session.
◦ An up-hill battle. A fight to get experts to consider Kai might be capable of a certain movement or how to help him get there.
◦ Limited scheduling options. It felt like the therapists'--not our family's—schedule was the priority.
◦ I wished, hoped, prayed, worked for developmental gains, committed to being patient and letting Kai reach his milestones at his pace, celebrated the milestones he achieved when he achieved them. A life of delayed gratification.
◦ Leveraging negative emotions: “Sometimes we just let the client get so frustrated that they do it themselves.”
◦ A focus on what's holding Kai back and waiting for those things to change--like that he doesn't chew much because he doesn't have many teeth yet.
◦ At 14 months old, I cut Kai's PT/OT sessions down to once a week instead of twice a week. I wanted to have time to do more developmental experiences outside the clinic that may not be labeled therapy, but I knew were therapeutic--things like swimming, music class, play dates, hanging out with our mini horse friends, playing on the playground, skating, and other childhood activities that are hard to cram in when we're always at the doctor or therapist several times a week. Therapy wasn't advantageous enough to be prioritized over these other things.
◦ This was the PT's response when I asked what we could add in to strengthen Kai's pelvic floor and the leg muscles he is able to use. I interpret this as a list of reasons Kai shouldn't or wouldn't do things and a condescending "education" about the diagnosis we'd been living since before Kai was born. It was the final straw for me and I regret that it took me so long to find a better option.
When Kai was about a year old, the covid quarantine was full-force, "stay-at-home" order. CCS only offered telehealth visits which I gladly declined. I was relieved to take a break from therapy and the exhaustion that came with it. I noticed Kai actually started advancing more developmentally without his weekly therapy and with quality time with mom and dad. I was already familiar with the idea of purposeful, periodic breaks from therapy, so decided that's what we were doing. But, I also started dreaming about partnering with therapists that we would miss if we didn't get to see, developmental gains we would miss if we didn't attend therapy regularly. I started asking around to other special needs parents how they decide a therapy clinic is best for their child. Through one of my faithful, outstanding networks, I found the private clinics OT Outdoors and Optimize PT/OT/Speech, where Kai attends now. It turns out that CCS has the most experience with Spina Bifida because private pediatric therapy clinics are relatively new in San Diego.
Here's what weekly therapy is like for us now (just the last few months) at the private clinics:
◦ Therapy is quality play time and quality bonding time.
◦ Equipment is setting out and ready when we walk into our therapy area (might be covid protocol).
◦ Leveraging and fostering positive emotions, a focus on “shared joy.” Avoidance of negative emotions because of the strong physical and emotional memory associated with them that can cause kids to avoid whatever activity prompted the negative feeling.
◦ Kai and I both look forward to the sessions. I often leave in a better mood than I entered.
◦ A main goal is to optimize the leg strength and movement Kai does have.
◦ Kai and his well-being is the focus.
◦ My husband describes the clinic as "very professional."
◦ One therapist told me during an assessment, “this should be easy and fun,” not a burden or one more thing on my plate. I can't describe my relief.
◦ Therapists creatively find ways to get Kai to work hard based on his personality and interests.
◦ I've watched kids run into therapy and other kids not wanting to leave therapy.
◦ I email and text therapists.
◦ I take photos every session.
◦ Easy scheduling around Kai's nap time.
◦ Encouraging, uplifting atmosphere.
◦ Kai has never cried through a session.
◦ Therapists feel like partners, enablers, encouragers, guides that come alongside us and equip us practically. Support.
◦ Therapists help us work with what's practical for our family.
◦ Therapists encourage me to engage and be part of the therapy sessions.
Through OT Outdoors, I also discovered the NAPA Center in Los Angeles, which I now consider the mecca of pediatric therapy. We just completed a 3-week NAPA therapy intensive session. This is what the experience has been like:
◦ Other parents I talked to who took their kids unanimously said "It's intense. Absolutely, DO IT." I completely concur after having taken Kai.
◦ 4 hours of therapy every day, 5 days/week, 3 weeks straight. We focused on eating, Cuevas Medek Exercise (CME), occupational therapy, and physical therapy mostly utilizing a bungee system.
◦ Therapy equipment and techniques that are difficult to find elsewhere such as Trexo robotics, CME, neurosuit, and more.
◦ An emotional rollercoaster for me: The first week especially when everything was completely new for all of us, I was either anxious watching Kai cry from discomfort and fear--or I was crying out of pride seeing Kai do new, difficult, scary things we weren't sure he was capable of! (Side note: super grateful for how my Beauty Counter Clean Deo held up and supported my wellness under the pressure! Who knew a deodorant could be such a relief!? haha!)
◦ A focus on all of Kai's potential and possibility. Like his limitations aren't even on the radar.
◦ An attitude of "why not?!" and "let's try!" This is what I was looking for when I asked Kai's old therapist to help strengthen Kai's pelvic floor and legs. Kai's old therapist also didn't jump on board when I suggested using a TENS unit on Kai, but Kai's CME therapist asked me if I was up for using it during the intensive--I was so excited!
◦ Impressively creative and effective exercises.
◦ Kind, FUN, and challenging therapists.
◦ Therapists challenge Kai to do things I or his weekly therapists probably wouldn't have tried in several months or years if ever. And he DOES THEM! I was surprised the NAPA website says 6-12 months of developmental gains may be achieved through an intensive versus weekly therapy. I'd say that's pretty accurate for us.
◦ Parents are welcome to bring or do whatever it takes to help keep their kid happy during the challenging sessions. We did a lot of singing and reading to Kai during therapy.
◦ Therapists creatively motivate Kai to work hard and enjoy it.
◦ An opportunity for Kai to show us what he's capable of. Endless potential, especially compared to the low ceiling I let Kai's old therapists put over him.
◦ I've grown to appreciate Kai's daily intensive therapists so much, I can't imagine life without them every week, intend to keep in touch with them. I know Kai will miss them, too, until we can get into another intensive.
◦ It's just the beginning, but so far keeping up with the home program is manageable by building it into our regular routine. I'm surprised and so grateful for how equipped I feel to guide Kai's follow up program. It helps that Kai has grown to enjoy the exercises and challenges of them, appreciates learning.
Here’s highlight of some of the gains. At Napa, Kai:
◦ started with refusing to let a feeding therapist touch the inside of his mouth, but left enjoying warm up oral exercises and chomping dried mango on the side of his mouth. Big steps towards more eating and talking.
◦ took his first assisted steps! This is HUGE! We started by cheering the first day that he moved his leg half an inch, but he moved both legs several big steps in a row by the end!!!!! I don't remember any PT we talked to up until that point ever even mentioning walking as a goal.
◦ started by fearfully screaming any time he was challenged to sit upright unassisted, but now loves the challenge of "showing his muscles" while sitting tall
◦ demonstrated he can use his hip flexors to pull his knees towards his chest in a prone position, crawl, and walk. He was also challenged to use his glutes for the first time I know of (and rose to that challenge)
◦ was stronger, more confident, and more talkative after the very first day
I posted robust daily updates to Kai's instagram if you'd like to follow him @thekaimcd (please PM me when you request to follow him if I don't know you). Here's one "before" and "after" of Kai's demeanor and strength he gained during the 3 week intensive. He didn’t just gain physical strength but, character strength by persevering. It's only been a week since we got back from LA, but now I want to do all development in intense 3 week increments to really help the growth sink in!
