I have NO IDEA why I waited so long to take Finley to NAPA Center. I think that I just figured all therapy was the same and that we were doing so much already, I assumed that all intensives were the same. People reach out to me every single day with “try this” and “try that” and at some point I just started thinking, “Nah- we are all good!” Matter of fact, my first day there one of the visiting therapists said to me, “I reached out to you a few years ago and told you that Finley would greatly benefit from this therapy,” I don’t remember every single email or message, but this one I remembered and I know I brushed her off. I feel so horrible about my ignorance, but you know what? You don’t know, what you don’t know. I brushed off the first friend that shared about SDR with me too. It’s all a learning experience, there’s no manual for raising a child with CP- but I am doing my best to offer resources from my experiences.
At Napa they do a few things that most places don’t.
CME is a dynamic technique used in physical and occupational therapy aimed at provoking improved postural responses in patients to promote progress toward developmental milestones.
The SpiderCage is a three-sided wire device that uses a belt and eight bungee cords to enable the child to perform balance and strengthening exercises with proper positioning and alignment. The SpiderCage assists the child in standing without a therapist’s assistance while allowing freedom of movement and facilitating balance.
The NeuroSuit frames the body providing support and resistance simultaneously. It facilitates proper movement and provides additional weight bearing distributed strategically throughout the body.
People FLY from all over the WORLD for their INTENSIVE THERAPY PROGRAM. Now I know why. NAPA opens up the calendar once a year and thats why there is a long waiting list, I remember thinking: I’ll wait, but DON’T!! DON’T WAIT!!!!
They recommend intensives a few times a year. It was about $5k out of pocket since it was “out of network” for our Insurance. Our deductible is met now though, so we are planning another trip in December. I was wondering what the heck the people that go 3x a year do for a living, but then I realized It gets less expensive each time you go with the calendar year.
Where do I stay?
For those of you traveling from out of town, I recommend staying close by. It’s in a busy and confusing part of LA and unless you’re accustomed to madness, stay within walking distance across the street. I believe they have a rate and NAPA can guide you in the right direction.
What about my other kids?
There’s a parent room and a little school program located in the same building that you can enroll any siblings in, 3 weeks is a long time and you’re going to want to give you full attention to your kiddo thats receiving the therapies. So definitely ask about that!
What about food?
Instacart + Door dash might just be the greatest invention ever! You can have goodies delivered to the center so you never have to leave. There are also vending machines on site for water/snacks. Theres a full kitchen in the parent room with coffee on tap! LOL, that was my favorite!
What should I bring to session?
Wear comfy clothes, Water, Snacks, Phone Charger, Tissues, Wipes. I always brought Finley in her adaptive stroller so I could use that as a home base for all my stuff. I worked while I was there so I brought my lap top and a charger as well.
How can I mentally prepare?
Prepare to experience TONS of emotions. Nothing can prepare you for that. You are going to see your child struggle like they never have before, you’re also going to witness tons of kiddos around you that are all fighting different wars. It put a lot in perspective for me;
I look to my right and theres a child learning to jump over hurdles. I long for the day Finley is working on that skill.
I look to my left and there is a child who is non-verbal struggling to learn to sit up. Then it makes me feel awful for LONGING for more skills, when I should be so grateful for the skills she does have.
You are going to be all over the place.
Its long days- in a new setting- you’re not home and can’t distract yourself with home-tasks. It’s a lot, but its the BEST!
On the last day the emotions hit me like a ton of bricks! THAT I was not expecting! I was sobbing uncontrollably.
They will tell you one week is more difficult tha the others, but as I talk with more and more NAPA families, it’s different for everyone. So don’t think you’re out of the ‘emotional woods’ at any point. It’s coming but you need to let yourself feel it all. As your child is growing, so are you.
They will record videos for you and give you a home program to work at home. I AM NOW a HUGE NAPA advocate!! If you’re on the fence, get off of it and just do it! You won’t regret it.
(video coming soon)