Mom of Onyx, age 5
I advocate for my son daily, it has become a natural part of life for me. Some of the bigger moments, which are very recent, would include the following. We just moved from Tampa, Florida to Columbus, Ohio. I knew it would be difficult, as we had established an amazing team in Tampa, an excellent public school therapist, private therapist and private preschool. Once we moved here to Columbus, the school IEP team tried to cut his services from 90 min/ week one on one therapy to 30 min a week one on one. They claimed with never having met him, that his Apraxia was not that bad and that 90 minutes was excessive. I stood my ground, came prepared with facts about Childhood Apraxia of Speech and facts about my son, with documents to back it up and would not accept the terms of the IEP until it included 90 min/week of one on one therapy. I am on our 3rd private therapist and am finally confident in her ability to effectively treat my son’s Apraxia. The new private preschool was rocky as well, but after many discussions with his teacher, she now communicates with me daily and Onyx loves her. I feel she genuinely is invested in helping him achieve his highest potential and she now has a great understanding of Apraxia for any future students with childhood apraxia of speech who may enter her classroom.
From family to strangers, I find myself constantly educating those around me about Apraxia and what it means to our family and my son. I am dedicated to making my son’s world more accepting as it is very difficult growing up in a world that was not made for a child with Apraxia. There are some very difficult days, but the days where I see my son achieve things that I didn’t even fathom as possible a year or even a month ago, I am reminded that the sky is the limit for him. I will help him achieve anything he dreams of as there are no limits to his success, just a different road to get there. I am embracing that road more and more everyday. This road is not the one I thought I would be on, but I am learning it is better. I see things in a different way. I have more compassion and understanding than I ever did before and am in total awe of what one little person can do with the challenges in place. He is truly my hero and I wouldn’t be the mother I am without him and everything that he is. He is simply beautiful.
My personal motto is:
If at first you don’t succeed, try try try again and again and again, until you accomplish exactly what it is you were striving for.