What brought you to Apraxia Kids?

My son was diagnosed with Apraxia when he was 3.5 years old, it was bitter sweet. I was happy to finally understand what was going on with my sweet loving baby boy who struggled to communicate but I also felt a sense of hopelessness. I had never heard of this disorder and I had serious mom guilt because my son was having such a hard time communicating, sensory regulation, and meltdowns. After the diagnosis I immediately went into research mode and started looking up all things CAS. I stumbled upon a book that was written by a mom and SLP of a child with apraxia and it screamed out to me because the title was “Overcoming Apraxia” which I was determined to help my son do. This booked open my eyes to a whole new world and offered me support when I felt so alone. While reading the book I started looking up local support groups to join but it wasn’t until Laura the author in the book talked about the magic she felt at her local Apraxia Kids walk that pushed me to actually join and become a Walk Coordinator for Apraxia Kids. My family and I did the virtual walk before, but I wanted my son to feel the magic of being celebrated for all his hard work so I decided to step out of my comfort zone and plan the Atlanta walk. It has been three years since I decided to do that and my son truly looks forward to the walk each year. We meet so many new people and we are thankful for this community.

 What is the biggest impact Apraxia Kids has had on your life?

Apraxia Kids has made the biggest impact on my life by giving me the tools needed to be an empowered and educated parent about CAS. The seminars, support groups and tool kits for advocating in my local community helped me to be a beacon of hope for my son. I never give up on him, because he never gives up on himself. In 2021, our local mayor recognized May 14th as awareness day and we continue to work to have initiatives that garner hope and awareness about CAS. The support groups are essential to building a village and it’s amazing and helpful that Apraxia Kids has one for every state. Lastly, Apraxia Kids has done a great job with the directory that allowed me to find a therapist that specializes in CAS in my local area and refer to other clinics in the area who have this specialty to add their clinics to the list. 

Do you have any advice for the apraxia community / someone just starting on their journey?

The best advice I can give to someone just starting their journey is to allow yourself grace, have patience, and practice at home. Grace to know that you will not know everything on this journey but as long as you are open to learn and trust your faith it will all work out for your good. Patience to know that this is not a quick process and sometimes it can take years of therapy. My son has been in intensive therapy for 3 years and went from preverbal to verbal. He’s in general education now with accommodations and continuing to thrive. Practicing at home is very important to the success rate of carry over for your child. Since most children are in therapy for 30 mins 2-3 times a day it does not leave a lot of room for practice. In the beginning I set aside at least 20-30 mins every day to go through flash cards, read for 30 mins every night (I still do this one) and labeled everything with sticky notes in my house and encouraged my son to use words versus pointing to what he wanted. Being consistent at home is 75% of the battle. Always remember you got this and there is a light at the end of the tunnel.

Bonus advice: join a support group as soon as you can, it helps trust me!

How has your contribution made an impact on the apraxia community? 

Being the Atlanta Walk Coordinator I get to see first-hand the impact the walk has on families. The families come in so excited to celebrate their stars and seeing them bring their village always makes me so happy because support is so essential on this journey. Seeing my own son go from very shy to running up with excitement to get his medal always shows me just how much things can change with the right support. Our planning committee does a great job at making sure that each family feels special with the little touches and I am thankful to be a part of it. 

I also wrote a children’s book based on the true story of how Tristan found his voice in hopes to continue to encourage diversity, inclusivity, awareness and resilience. My son has always been a warrior and with the book, speaking engagements and readings we hope to inspire other children to find their voices as well.