Thursday, April 7, 2016

Baylor's Fight: Trust Your Motherly Instinct.

Our son Baylor was diagnosed at the age of 2. But luckily we noticed something wasn’t right at 15 months old. Baylor started out like any other typical 1 year old saying his first words: “Momma, Dada, bye-bye and duck. Then one day, he never said them again. Just like that, POOF, they were gone. I brought up my concerns to his pediatrician for months but he kept assuring me he was not concerned. My motherly instinct was telling me otherwise and I sought out another opinion with a pediatric neurologist. His neurologist wanted to see him several more times before she diagnosed him and gave us the information for Early Steps, which is a state funded program in Louisiana. Baylor was evaluated by the state and was approved for speech therapy, occupational therapy and special instruction. He qualified for the additional therapies because on top of his speech delay, he also had textural/sensory issues and he also had a hard time chewing, swallowing and spitting out food he did not like. In December 2010, a few days after his second birthday his neurologist diagnosed Baylor with Apraxia.

Even after Baylor was diagnosed, we did not realize how serious this disorder was. We had no idea what to do or where to start. Luckily his teacher at his Mom’s Day Out program recommended Baton Rouge Speech and Hearing to us. I called and made the appointment and after speaking with the therapist and doing our own research, it struck us that we were dealing with something more complicated than we ever imagined. At the age of 3, he started seeing an Apraxia specialist several times a week. At this point, he was still only able to grunt and point to tell me what he wanted or needed. He still babbled a lot like a baby and could not form any words. After seeing the therapist for a little over a year, Baylor (at the age of 4) was finally able to say 1 to 2 words at a time. During this time, he also transitioned from Early Steps into the school system where he was also receiving therapies.

As time went on and the more therapy Baylor received, the better his speech improved. Finally at the age of 4 he was saying 3 – 4 words. We got in contact with Baylor’s previous Early Steps therapist who set us up with one of her S.T.’s that worked privately in our area and was certified in prompting, which is key in treating Apraxia. She has been seeing Baylor privately in our home 2 times a week for over a year and he still receives therapy at school where he is now in Kindergarten.

His private therapist has done a phenomenal job with him and we are so thrilled with his progress. Now at the age of 6, he is almost speaking in complete sentences. Last year was the first time I heard him say “Mommy, I love you” in a clear, complete, full sentence. You cannot imagine what that did to my heart after hearing those words. Don’t get me wrong, his speech is still a work in progress. He still leaves off final constants here and there, he struggles with saying his G’s and J’s and he leaves out articles while talking (the, are, is, etc.). I can understand him 100% of the time of course, because I am his Mom. His close friends understand him the majority of the time as well. We are hoping his Apraxia will resolve itself over time, but more than likely it will be something we know he may have to live with for the rest of his life in some way.

Baylor is a sweet, fun loving, typical 7 year old that enjoys playing outside, playing sports and going to school (most of the time). I no longer have all the worries and fears that once consumed my life and kept me from enjoying my son the way a mother should. My husband and I have learned to take one day at a time and watching the progress Baylor has made, we continue to keep the hope that it will only continue to improve every day. I have to think early intervention played a major role in improving Baylor’s Apraxia. So, I say to all of the mother’s out there: trust your motherly instinct, as you know your child better than anyone.