Learning to Move with ABM Lessons

Over the past 2 years, I’ve referenced ABM lessons a number of times without going into detail about what this is and how we came across it. So, finally, after much success with ABM, I sat down and wrote this post about how we began with the Anat Baniel Method.

Have you ever sat and watched an infant’s body learn? It seems as every part of them moves at all hours of the day, twisting and turning, exploring, learning where their body is in space. These movements are repeated thousands of times, helping to build the muscles necessary for sitting up, crawling, walking, jumping, all gross and fine motor skills that are typically developed. When the brain is damaged in infancy, the body skips out on many of these movements, causing developmental delays like what we’ve seen with Solly.

When Solly was an infant, I think I always knew he wasn’t moving as much as a typical baby, but it never struck me how few of those subtle, brain-building movements he was making until Bea came along.

In the Fall of 2016, I was poking around the Internet, looking for new therapy ideas and resources because Solly was stuck in a rut. One year prior, I’d been so excited to move to Nashville and gain access to a new team of doctors and therapists to help Solly continue to thrive, but over the year, I felt like our gains grew smaller and smaller. Solly was hitting a plateau. I was growing concerned that this was it – there were no more gains to be made. (A crazy thought considering Solly was just two years old!)

Continue reading

NAPA is Magical

On Day 1 of our 3 week intensive at the NAPA Center, which stands for Neurological and Physical Abilitation and is located in Los Angeles (and Sydney and soon-to-be Boston) and NOT Napa Valley, I proudly posted a photo on Instagram of Solly kicking butt and standing (with assistance) during the first hour of his intensive therapy. A Mama of another CP kiddo quickly posted: “NAPA is magical! I hope you have a great experience.”

I smiled as I read her comment, thinking to myself – yeah, yeah, I’m sure it’s great, but we’ve done intensive therapy before and I’m pretty sure I know how everything will go.

Nope. I was wrong. That Mama was right. NAPA is the most magical and amazing place on Earth. Solly made the most gains I’ve ever seen him make in a short time period.

Continue reading

Just Passin’ Time

Solly and the HBOT chamber

Solly in his submarine

This morning, Solly and I finished our 5th of 40 dives in our second round of hyperbaric oxygen therapy (HBOT).

As I’ve told folks about this therapy over the past few days, the biggest question I’ve gotten is: how the heck do you pass the time in that chamber? During our first round of treatment, the answer to this question was easy: we were in a sleek, all-glass chamber with a TV on the outside, so we’d watch an hour of Sesame Street or Fixer Upper and our time in the chamber would pass by rather quickly. However, the local facility where we’re doing our second round of HBOT has a very different chamber called the Fortius 420, which looks a bit like a submarine – it’s fairly dark, has three small windows, and no TV (eek!). This difference is, in part, what led to my anxiety before we began our second round of treatment. I kept worrying, “How was I going to entertain a 3-year-old in an enclosed space for over an hour every day….. and stay sane?”

In sum, we spend 75 minutes in the chamber. We “descend” to a pressure of 1.5 atmospheres for about 7 minutes, we are at that depth for 60 minutes, and then we “ascend” for about 7 minutes. We’re allowed to bring a bottle for Solly to drink, a few books, and some approved toys.

Continue reading

The Right Kind of Support

Before I had Solly in my life, social media was a place to simply share photos, articles, humblebrag, and occasionally whine. Back then, even though I was working in digital marketing, I felt myself growing increasingly annoyed with all the oversharing on all platforms and was particularly ready to pull the plug on Facebook (hello, addiction!).

Then, I had a special needs child. Because of HIPPA, our doctors and therapists couldn’t connect me with other parents going through a similar journey. I connected with a few parents while in waiting rooms, but their child’s diagnosis wasn’t always the same, so I still had questions and craved advice from parents who had been there, done that. So, I started googling and realized how many special needs parents were making those kinds of connections on social media – mostly, Facebook, but also Instagram and Twitter. Over the past three years, I’ve started one support group and have followed and participated in several others. These groups not only help me discover new therapies, new medical treatments, and doctors that can help Solly, but they also give me a place to vent and share wins with people who go through similar ups and downs every day. Plus, I’ve even gotten to meet several local parents who I’ve since met up with in person! (These meet ups are refreshing – it’s always like reconnecting with a long-lost friend.)

A daily walk in the shoes of a special needs parent is certainly not an easy one. But I’ve found that with the right support group, life has gotten a little less scary and, in most cases, I’ve even felt empowered when making decisions for Solly.

If you’re new to a cerebral palsy or stroke diagnosis, or you’re simply looking for help with some of the alternative therapies, here’s a list of my go-to support groups on Facebook:

General

KISS Pediatric Stroke Support (I started this support group with two other stroke Mamas so we could not only connect parents with one another and share experiences, but so we could also follow what non-profits were doing to advance pediatric stroke awareness. We’ve grown to over 1,000 members and have parents from all over the world.)
Mom’s of Pediatric Stroke Survivors (If you’re local to the middle Tennessee area, be sure to join this one. It’s based in Nashville and gives lots of good resources on local therapies and doctors, plus the Mama who started it puts together a meet up every few months.)
CP Warriors, Mommies, Daddies, Grandparents, and Caregivers
2014 Cerebral Palsy Babies Support

Medical & Alternative Procedures

SPML – Selective Percutaneous Myofascial Lengthening
HBOT for Pediatric Neurological Conditions
Parents for HBOT
Stem Cell Therapy for Cerebral Palsy and Brain Injury (Parents Information)
Pediatric Cannabis for CP & Other NeuroMuscular Disorders
Pediatric Cannabis Therapy
Anat Baniel Method Parents/Caregivers

Know of any others I should add to the list? Feel free to send them my way!

As I mentioned above, I’ve also met some parents and gotten great info on other social media platforms. I’ll do my best to put together a post with my favorites, so if Facebook isn’t your thing, stay tuned!

Solly and Bea

Another type of support often seen in our house: sister helping brother!