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“Advocate like a Mother”

“Advocate like a Mother”

Hey mamas, nobody knows our kids better than us. We may not be perfect, but we know what they want or need.  We know their different cries, whines, expressions or emotional melt downs. Health wise we know when there is something wrong too. And my advice to you is trust your mama gut and don’t let anyone tell you otherwise!

Me... I don’t take NO for an answer! It’s just my personality, you could say its a strength of mine. 

Here’s a little back story. We adopted our baby girl from Ukraine in 2017. She was abandoned at birth due to her diagnosis of Down syndrome and a heart defect. She joined our family at 12 months old. With her heartbreaking history of neglect and malnourishment, I swore I would do everything in my power to provide her what she deserves and more! 

Once she was home and we were settled, we got her all of the medical care she needed and began in home therapies, in attempt to get her caught up to where she should be for her age. This included the need of physical therapy, occupational therapy, speech therapy, and feeding therapy.  

We worked with her many hours per day, in even the littlest of tasks that most take for granted, such as picking up objects and maintaining a grip, rolling a ball, sitting up without tipping over, getting on all 4’s to learn to crawl. These things are not necessarily natural instinct or easy to do for a child with Down syndrome. She mastered so many tasks and quicker then we ever expected. 

Fast forward to age 2, we had been having Physical Therapy come at our home one time per week for the about 12 months.  We had gotten to a point where she could stand up on her own and take about 4 steps (wobbly and unbalanced steps) and then face plant due to the lack of muscle tone and stability. I asked our PT for some more ideas on how to keep her up and learn not to face plant. She would literally crash onto the floor and land on her face or stomach, sometimes catch herself ... but it wasn’t the most gentle landing. The PT worked with her on trying to stay up, but nothing seemed to work. 

I decided to branch out and do my own research. I read other people’s stories,  blogs on therapy, listened to podcasts, and talked to our pediatrician.   She was doing amazing, knowing where she came from and how delayed she was, but I just felt that something wasn’t “clicking” or “physically working” for her with stability and balance and that it would take more than physical therapy to get her walking.

I took this insight of mine to the PT multiple times and respectively told her how I was feeling. I thought that she needed something... something to give her that jump start on balance. From all of my research, the simple answer was a gait trainer (aka posterior walker). Many kids use these to help them walk until they are stable enough to walk on their own.  Our PT resisted and said NO.  She stuck behind her “NO” for approximately 6 months of my asking. At that point, I decided that my child was now beyond the knowledge of this inexperienced PT, and that I was done having my baby be her “guinea pig” as she learned more about children with Down syndrome. When all research showed evidence of success, with more pros than cons to using a gait trainer for struggling walkers, why did I get so much push back?

This is where my strength of not taking NO for an answer came into play.  If the PT wasn’t going to help me get her a medically provided gait trainer, then I was going to have to go around her and do it myself. 

✔️Fire the physical therapist 

✔️See pediatrician and request a medical prescription 

✔️submit for a gait trainer with the help of the pediatric office (by passing the therapist)

✔️see a pediatric orthopedic specialist to solidify my gut feeling 

Our Pediatrician sent in the medical request for a gait trainer, and her assistant and I filled out the paperwork for the a trainer with the specs that, based on my research, would best suit our little one.  In the back of my head was always, am I doing the right thing by going against a Physical Therapists opinion?  But I still felt that she was wrong.  While the gait trainer was under the 10 day insurance approval process , I was scheduled to see the Pediatric Orthopedic Specialist.  Of all professionals, this was the one that would have the best insight and most experienced opinion.  Not much to my surprise, our appointment went well.  He spent a lot of time analyzing her stance, gait, bone structure and loose joints. He commented on her lack of stability in her hips and ankles when attempting those steps, in addition to such low tone in her mid section, which causes her to face plant when trying to move forward.  He finished the appointment with his recommendations.  He said her body needs to be trained to stay upright along with building muscle tone in her trunk while in the upright position, and the best way to do this is by using a gait trainer to obtain stability on her sides while she learns.  In addition, he prescribed her SMO’s (ankle braces) to help keep her stable when stepping.

I share my story with you because so often as mama’s we doubt ourselves.  But never underestimate the power of being a mom!  We have these super powers that others just don’t understand and won't understand.  Bottomline is ... we know what is best for OUR children. And many times in your children’s lives, your mama powers will be tested... trust your gut instincts and don't doubt yourself. And when things aren’t going how you want them to, use this advice and “advocate like a mother!”