Raising a Child with a Disability

Disclaimer: I am not a medical professional. This post and all my blog posts are my experiences and opinions only.

When Carissa and I started talking about this blog, I immediately knew I wanted to share my experiences of being a mother raising a child with a disability. Writing this is hard and a little bit scary, but I’ve also felt for sometime now that I need to share the knowledge that I am acquiring in hope that it could help someone else. So here it goes…

My Son

My son, Seth, is a wonderful, chatty, smart, outgoing, ball loving toddler. He also has spastic diplegia or spasticity (tightness) that primarily affects motor control in his legs. Basically, he has tightness in his legs that keeps them from moving in a typical walking pattern. Because of this he uses a posterior walker to get around. 

Our Journey (The Abridged Version)

The journey to identify what was going on with our son started right before his 1st birthday. Up until this point everything had been hunky-dory. 

• Twin Pregnancy = Normal
• C-Section = Normal
• Well Checks = Normal

My husband and I started to suspect something when Seth was not hands-knees crawling. He rolled to get around for the longest time and then started army crawling around 11 months. At his one year appointment, we brought up our concerns to his pediatrician and were told “I’m sure everything is fine. Some kids never hands-knee crawl.” While this brought immediate relief, something still felt off. 

If you remember anything from our blog, please remember, trust YOUR gut. Advocate for your child. You are their voice. You are probably right.

After more conversations, we decided to get Seth evaluated by a Physical Therapist and Occupational Therapist. It was decided we would start PT and OT once a week. We then went back to his Pediatrician and got a referral for a Neurologist and it all picked up from there. Since then we’ve done MRIs, EMG, Ultrasounds, X-Rays, Surgery, Blood Tests, Genetic Testing, got AFOs, did OT, do PT and Aqua PT and see a lot of pediatric specialists every 6 months for continued care. 

The Here and Now

This is a continuous journey. Raising a child with a disability ebbs and flows depending on the day, week, month. It is not where we thought we would be, but it is one that I will proudly go on for my son, who I love with all of my being. 

I am grateful for our support network of excellent doctors and loving family and friends. 

This is the first of many posts that I will share about our journey raising a child with a disability. The highlights, lowlights, laughter, gear, hacks, etc. I hope that you find nuggets in our journey that will help you with yours. 

1 in 20 kids have a disability. That gives 20 kids a daily opportunity to learn about: diversity, collaboration, acceptance, inclusion and friendship. Will you lead them?

Unknown