Well, I went down the rabbit hole. At around 15 months old, Elyssa still wasn't walking and I started getting that creeping feeling that alerts you as a mother when your child isn't meeting those ever so "in-your-face" milestones. I've never chalked up any delay to "well, she has Williams syndrome" so I won't expect that milestone to come at the typical time it should. The fact is, I do expect it to. Why should anyone that is differently-abled not have a high standard set for themselves? And, I do everything in my power to help make that happen. If we bring our "A" game and it still doesn't happen- then so be it. But in my eyes, I never have to wonder if there was something else I could have done to help her get there.
So I perused the web for therapies that were unique and centers that offered them. That is where I came across the Napa Center of Boston and the CME therapy they offer. They have intensive sessions which means the child goes to them for hours of therapy a day, five days a week, for three weeks. That is 45 hours of therapy in just under a month. That is more therapy than most kids get in a year. The research says that most children gain the same amount of progress equivalent to 6 to 12 months of regular therapies at home. I was sold. I messaged families that had been there, emailed the center, registered for a ton of "waitlisted" intensives, got insurance taken care of, evaluations faxed over, and waited to see if we were accepted.
As a few months went by, I decided to check-in with an email to see if anyone had canceled for any of the upcoming intensives. I figured since families fly in from all over the country to attend and with the country on lockdown due to the COVID pandemic, there was a possibility of a cancellation. Amazingly, the response I received was that there was an opening for the July 6th -July 24th session. We were lucky that we are in driving distance and that Lou and I are both off from work and could experience this together. Elliana is also off from school. How wonderful that we could make this work and have it be a lovely family trip. It fell into place for us.
Today was day 2 of the intensive. Lou and I will be switching off days going with Elyssa and the other takes Elliana to fun places. On the weekends we will do sightseeing as a family.
I want all you mamas out there to understand the underlying message here. Had I not done some further digging and sought this opportunity out, I would have never known about it and my daughter would have missed out. No one is going to make sure that you know about ALL of the amazing resources, therapies, and opportunities for your child EXCEPT you. If you want more for your child, go and get it. If you hit a roadblock, go around it. If you don't get the answer you want, ask someone else. Use your connections, ask questions, and model resilience for your child. Show up, stand up, and be their voice.
To learn about the NAPA Center and the reason it was founded read below. The type of therapy that I was first intrigued by is called CME which is outlined below and shown in the video. I will be sharing videos and posts of Elyssa's hard work throughout our journey over the course of the next three weeks. Please share this on all platforms so that other families can be made aware of these amazing programs. There are currently three NAPA centers in the US and one more opening in October. If you'd like further information please reach out. Thank you from my family to yours.
NAPA (Neurological and Physical Abilitation) Center was founded in 2008 by Lynette LaScala after spending two decades traveling around the world in search of the best therapies and treatments for her son Cody. Cody experienced a near-drowning accident on his first birthday, after which Lynette made it her life’s mission to help him reach his full potential and instill hope. Her journeys around the world inspired her to make the best and most innovative therapies available under one roof.
Cuevas Medek Exercise is a technique developed by Ramón Cuevas in 1972 while he was working with several young children. The basic goal of CME is “to create a method of exercises that will provoke the automatic postural responses from the motor delayed children, in spite of their neurological damage and level of awareness.”
During CME, the therapist physically manipulates the child to stretch out tight muscles and train the muscles in groups. These manipulations eventually allow the child to gain control over his or her trunk, which is necessary to perform basic gross motor activities such as sitting, standing, and walking. Sessions begin on a table. Then, if the child is able to stand with ankle support, the floor is used. Floor exercises involve seven pieces of equipment, which can be configured in various ways to challenge the child’s sense of balance. Exercises are repeated until the reaction of the brain becomes automatic and the body reacts normally to situations required to keep its balance.
Hello! I'm so glad that you arrived here! They say strength is in numbers right? Let's get stronger together! On my journey, I've found that you need to be loud about things that are important to you. So here I am. I hope my story resonates with you and helps you on your journey.
I am an educator (19 years and counting) and a Williams syndrome advocate.My husband Lou and I have been together for about ten years now. Married for three. He puts my domestication skills to shame. Elliana,now 5, was the first to make me a mommy. Elyssa, now 1, added more blessings to our family. Saying that I am utterly grateful for both of my daughters and the bond that they share is an understatement. Red and Fendi, our two dogs, complete the chaos that ensues on the daily.
Elyssa was born with Williams syndrome. Williams syndrome is a genetic condition resulting from a deletion of 26-28 genes on chromosome 7. It occurs in 1 of 10,000 individuals. While there are some challenges that generally come with having this condition such as cardiovascular disease, low muscle tone, developmental delays there is so much more to envision. People with Ws are little rays of sunshine that leave footprints of kindness and love everywhere they go. They have a strong affinityfor music and happiness radiates from their smiles. You can follow our family's journey with Ws on our page, Perfectly Placed.
So the nitty-gritty about me. Well, I'm 40. I've reached the age where sleeping with the wrong pillow feels like I fell out of a 12th story window. How did I get here? Actually, number 40 doesn't bother me. The way I felt leading up to this age did. I've been on a crusade for answers to my symptoms since I was 12. Listed below is the shortlist of the mystery symptoms that had and sometimes continue to plague me...
* Cold intolerance
* Night sweats
* Inability to lose weight
* Chronic Fatigue
* Brain fog so debilitating I've had MRI's done
* Panic Attacks
* Hair loss
* Joint weakness
After years of advocating for myself, I finally got diagnosed with an Auto-Immune disease. I was hopeful that with medication to balance my thyroid I would start to feel better. However, this was not the case. I continued to struggle. The worst part for me was not having the energy to play with my girls. This was my breaking point. I knew that there had to be more that I could do to help myself. More proactive work needed to be done.
Through research, talking to the right people, trial and error, and a lot of self-love, I am slowly getting my life back. I've changed my diet. I've added in supplements to support healing. I've incorporated essential oils to raise the frequency of my thyroid= proper thyroid function. All toxic products have been eliminated from our home.
My mission is to be a cultivator of information for you. To keep digging for answers. To look into all modalities for supporting the mind, body, and soul and sharing my experiences with you. Some of it will be eye-opening. Some of it is comical. All of its truth.
Let's work towards removing all of the barriers that create roadblocks for us and restoring balance in our bodies' natural ability to heal.Heal yourself, first. The rest will come later.
PS. If you haven't already joined my private FB group that chronicles all of the things click here atthecore.