Crawling Guide Rare Disease
Education, Education

Defying Statistics By Crawling

Belly time to support necessary core muscles
Belly time to support necessary core muscles

Ever since our daughter Rylae was diagnosed with the rare disease known simply as AADC deficiency, a sea of endless questions began flowing through our minds. Will Rylae be able to crawl one day? Will she be able to walk and run like others? Will Rylae tell us she loves us? Will she live a normal life? 

Doctors told us many things that AADC deficiency patients would not be able to do; such as crawling. This was based on available research and statistics. On face value it made since. It is a complicated coordinated process of several movements that requires physical strength in all four limbs, core, and neck. However we partnered with doctors and therapists that did believe that Rylae was going to crawl. Rich and I woke up an hour earlier each day working on crawling – everyday. Eventually, we proved the statistics wrong. Rylae-Ann learned to crawl!;

"AADC deficiency patients will not be able to crawl. They do not have the muscle strength and are not capable of executing the coordination necessary."

Defy Statistics

How To Achieve Crawling

Daily
Practice

Play
Based

Slow &
Steady

Team
Work

Positive
Feedback

1. We practiced crawling daily. We helped Rylae get on all four limbs. One parent would support her arms and the other parent would hold her thighs. 

2. We feel that it was important to send our child to a setting where she could see other children crawl and play. This will encourage them to do the same!

3. This won’t happy over night. Practice slowly and build it up. As a mom, I’m always feeling I’m not doing enough for my child. I’m always pushing her. However, it is also important to work at the pace of your child. Make sure your child feels comfortable. It may not be happy smiles all the way through, but feeling comfortable and safe is crucial. 

4. Working with your therapists and other families is important. Rich and I are definitely a good team. I was always better with the legs so I would hold on to Rylae’s legs while he would manage her arms. As he lifted Rylae’s right hand forward, I would move Rylae’s left leg forward and the same for the left arm and right leg. We started with about 3 crawls and slowly build it up to 10 crawls until she was independent. Track the progress of each session!

5. Giving your child praise and positive feedback builds their confidence. We often say “You can do it Rylae!” or “You are so strong and amazing. We are so proud of you.” At the end of a set, Rylae would have a small reward like an iPad or her favorite toy. The reward was also a time for her to have a quick recovery before we finished the set.

Scooting Rylae

"At times it seemed as if Rylae was not making any progress. We had doubts that she would be able to do it. However, we knew that even if she couldn't crawl, that these exercises were great for her coordination and strength. Rylae learned to scoot before she could crawl."

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