Why we do yoga…
Yoga has been a part of my life for awhile. I’ve taken yoga classes off and on for the past twenty years. I’ve always loved it as a workout. When Magnolia was 2 years old, I wanted her to take yoga classes, so we would be the cute mommy and daughter yoga duo. Little did I know, it was about to be a big part of my life in a different way. When Magnolia was diagnosed yoga took on a different meaning. The first year after diagnosis, when she was 3-4 years old, Magnolia’s therapists would send me home with home work, to work with her, to help her etc. My mind was constantly buzzing and I would never remember what they wanted me to do. I would write down our homework, I’d get frustrated because I didn’t know if I was doing the therapies right. So I started to do yoga again with her when it was time for homework. It was something I could do, and I would feel less guilty that I wasn’t fully doing her therapy homework. It was also much easier for Shelly, Magnolia’s aide/nanny/bff, and I to figure out strengthening exercises for her. A therapist would tell me, Magnolia needs to bear weight on her arms, it will help with the stereotypies. So, Shelly and I would figure out the yoga positions that would work. At first, it was the two of us just using our knowledge of yoga classes. Shelly got a certification for teaching Yoga for Kids and I got a certification for teaching Yoga for kids with Special Needs. This isn’t needed though, Rett Syndrome is its own animal. What we do is figure out what yoga positions would be good for Mags and then work on those.
Like most other areas of life, you know your kid best. You are a certified parent and that’s all that matters. I just certified you as a parent. Congratulations.
All you need to do is just start doing it. Start with one position. Start with criss cross applesauce. Or whatever position it may be and just focus on that one position. Being calm, being present. Ask yourself, what does my kid need for me to help them into and out of this position. That’s it. That one position can teach you so much. Use the process to get into that position as part of the experience. Example, If your kid is ambulatory. How do they get themselves to the ground? We have to help Mags to sit on the ground. It is very difficult for her to squat, so we help her squat to sit, then put her into the position. If she is anxious, body moving, arms out of control, we rub her back, massage her arms, try to help her calm. That one position of sitting on the floor, may take us 5-10 minutes to get into and then we are only there for a few moments. The point is, its about the process. Maybe the next time you try the position, your kid is there for a minute instead of seconds.
Set aside 15-20 minutes and have your yoga practice. We play calming music, we diffuse essential oils and try to do yoga in a clear area.
What tools do we use…
A fun app on itunes that I found recently is this Yoga Therapy app and also this Wheelchair Exercises app. I bought the app bundle but these two really are my favorites. Within the app, you choose the exercise and then within the exercise page, there is a DESCRIPTION tab, MODIFICATIONS tab, BENEFITS tab and CONTRADICTIONS tab. I found these very helpful. Honestly, as a parent with a kid with disabilities, the amount of information that we have to absorb, this really helped. I love when something is clear and informative. I just started working with these apps and I’m glad that I purchased them. Great reference guide.
What we use almost every time we yoga with Magnolia:
The tools we have been continually with Mags for the past 6 years:
A yoga mat, which isn’t even necessary, but I do love making any activity purposeful. I do yoga, so we just used my yoga mats for the first couple of years. If you are trying to balance your budget and figure out, priority of purchase a yoga mat is not necessary.
A yoga block
A Yoga guide. This could be the Yoga Therapy app, the Yoga Pretzel cards or a Yoga book.
We have been using the Yoga Pretzels box of cards because I liked being able to choose cards and create our lesson. With Mags and Rett Syndrome we aren’t doing a yoga flow, which is a continuous movement/flow of yoga poses. You will be helping your child with the positions. We usually choose 5 cards to do each day. Depending on what Mags needs, we change up the cards. Although, we do make sure to include a “weight bearing on her hands” card such as the plank. As you learn the positions and the cards, you will become used to a routine. You will start seeing improvements in the tiniest of ways, but its worth it. I bought the Yoga Pretzels cards on Amazon and the Gaiam block at Target. I have two cork blocks that are stiff and heavy, those are mostly for me but occasionally we will use them for Mags.
The two mats I have in the picture are from Chi Universe. I think they are adorable. I actually bid on them at the LA Reverse Rett Gala a few years ago. I think their program is great, but it doesn’t really work for Mags. We do silly stuff, like sit your booty on the star, stretch to reach your toes and the hearts. I included them here because you’ll see them in most of our yoga posts and if you are interested, you should look into them.
When Mags was 2-4 years old I used a book called Kids yoga. It has pictures of animals doing yoga poses. It’s cute too.
Another great resource for me has been a book called Yoga Therapy for Children with Autism and Special Needs by Louise Goldberg. There is a ton of information in this book as well. Yoga information, poses, therapeutic benefits, etc. If you want to read and find out about yoga and how it can help you with your kid with special needs, this is a great book.
How does this help Magnolia…
With Rett Syndrome, there is so much happening at all times for us. We are constantly balancing a multitude of symptoms, anxiety, breathing issues, necessity for stretching and exercise. Yoga therapy seems to include all of that.
Yoga therapy can be Physical Therapy or Occupational Therapy.
Something else that has been a huge benefit to Mags is chanting. Yep, chanting “Ommm” “Ommmm” Long winded “Ommmms” happen a lot in our house. It calms her. When she starts to hyperventilate, I start chanting “Ommmmm” and it calms her. Its not 100%, but enough that I continue to do it. Now, when Mags hyperventilates her 2 1/2 year old brother will automatically start chanting “Ommmm, Mags Ommmm” It always makes her smile.
I read that the monk’s chant resembles the sound of the earth, deep down. If all of our technology and city noises etc were turned off. The sound of the earth would be present and it is grounding and calming. I’ve always loved thinking this.
I’m a big believer in yoga – yoga for myself and yoga for Mags. I could write an entire blog about how doing yoga when Mags was diagnosed, changed my life. I will, but today I feel yoga for kids with special needs is a really good thing. If you use it to connect to each other, just as a different activity to do. If you use it to stretch, build strength and skills. Its all worth it.
I hope you become a yogi with your lil yogi. Namaste. The light in me, sees the light in you.
The News We’ve Been Waiting for: “Gene Therapy Program for Rett Syndrome will be advanced by biotech company.” Last week RSRT sent out an email announcing they will be going to a Gene therapy trial for Rett. Reading those words took my breath away. I froze for a moment. My hands were shaking. Since Maggie was diagnosed, I had hoped I would read those words one day.
Rett Syndrome will be going to gene therapy trials. Its not if, its when. That is huge. As always, thank you for being our support. We are not there yet, and we will need more help. But we will get there, with a little bit of pixie dust.
Monica at RSRT wrote a blog, that is honest, hopeful and informative. She discusses what a gene therapy trial would possibly mean for us. Read that blog here…
There is so much hope. Take the time to read the initial press release here. It is worth it.
Pixie dust goes here