httpsThis post has been a long time coming. It is something I have sat down to write time and time again, but I never seem to find the right words. Which, is ironic, because that is exactly what Apraxia is. One year ago on May the 1st we received a diagnosis for Judah of Apraxia of Speech. If you have never heard of Apraxia, like me, it is a neurological disconnect between the part of the brain that remembers the muscle patterns you need to create a word... and your lips. Our sweet Judah had been in speech for years because of all the ear infections he had as a baby ( 16 infections before his first birthday and then he got tubes), or so we thought, but he really had not made any progress. He was obviously intelligent, and he could craft some of the coolest engineered "machines" to get to things he wanted; a pull system attached to a toy ride on train to yank open a kitchen cabinet, a stacked tower of toys with an umbrella to unlatch the pantry, a ruler and string attached to his carseat so he could reach the buttons on the dvd player... etc. so there was no question about the pink substance between his ears, we just had no explanation for why he wasn't speaking.
On top of that, he began to lose words. By lose, I mean, he knew the word mom and used it regularly for a while and then poof, one day it was gone and I had no name. For months he would get my attention by grabbing my face, or my leg and pointing at things he needed or wanted. This grew frustrating for both of us and his patience with us grew thin. I was nearing the end of my pregnancy with Hollis and Judah was about to age out of home therapy and enter an Early Childhood Special Ed classroom where he would get more one on one time with a teacher and a speech pathologist. Judah's first day of Pre-k actually ended up being the day I had Hollis, so I missed that. But, while I was on bedrest recovering from my c-section (God bless the c-section Mama's) Judah was struggling! I am sure in an ideal world, one would not toss their 3 year old, non-verbal child who literally had 20 words in his vocabulary IF we counted animal sounds and vroom vroom, beep, weee, as words, into a classroom full of speaking children while adding a new baby to the home dynamic. BUT, that is what we had to do, so part of me was thinking this was just regression from stress and being de-throned as the smallest human in the home..... and part of me thought there was something else going on. I gave it about a month, and then when things weren't better, I began googling. I came across an article about Childhood Apraxia of Speech and as I read it I sobbed. THIS WAS MY CHILD, I didn't want it to be, but it answered so many questions to why Judah was struggling. I showed the article to Joe and my mom, then I started to draft an email to Judah's teacher. I asked her if in his speech sessions, or in class if anyone had ever suspected Apraxia, and if this was something I should pursue with his pediatrician. His amazing teacher wrote me back almost immediately and said "Mrs. Perry, you aren't going to believe this, but, the speech pathologist was just talking to me yesterday about how she thought Judah had Apraxia and she asked me what the best way to approach breaking the news to you and his dad would be. We would love for him to see a pediatrician and get a formal diagnosis. Please keep us informed so we can best support you all and Judah during this time." Ya'll God is so good. If I had been blind sided with this info after school one day, I would have been defensive of my sweet boy, but instead God stirred my own heart and led me to the answer before the diagnosis came. We later saw his Pediatrician and a LSP and both were in agreement that Childhood Apraxia of Speech was the official diagnosis. We cried. I cried every time I talked about it for a month! I was angry my sweet boy would have YEARS of work ahead of him and even then he would always have struggles to communicate. We invested in a good children's sign language DVD series, as recommended by the SLP to help while we waited on word development and we all learned to sign as a family. Over the past year Judah has received specialized speech classes for children with his particular issues 5 days a week! He was placed in a Early Childhood class with a signing teacher so he could learn even more signing until his words came. This immediately began to relieve his frustration and when his stress level dropped life for all of us got easier. He made one friend at school, and then another, he was not "alone" anymore. I turned in my cap as VP of PWOC and took on Judah's needs as my full time job. He started receiving OT as well to work on some food issues, swallowing issues, and motor planning issues all linked to his Apraxia. Even with COVID we have continues therapy via the laptop at home. 12 crazy, intense, and hard months later I can happily say that Judah can speak! We are still a long way from full communication but, he rarely needs me to translate for him anymore and he uses both signs and words to express himself. He has gone from an anxious and disconnected little boy who used to spend hours in his "mind palace" playing alone, to a boy who loves having friends and introduces himself to everyone we see on family walks outside!
So, why am I sharing this now? Because MAY is Apraxia Awareness month and I could not let it go by without sharing our story. Because now that I am on the otherside of this year I can tell you the work was worth it 100%. Because I want you to know what Apraxia is so you can recognize it, and be compassionate to the mom who is crying with her child because she doesn't know what he wants and he(she) doesn't know how to tell her. We had many, many times when Judah was asking for something and we had no idea what it was. I would say things like "Is it a place? A food? A movie? A toy?" sometimes he would be able to help me guess other times he would just sob in frustration. I would grab his little face and say "I know those words are stuck in your head and I know you are so mad I can not understand you, but I am trying baby". Slowly they came, slowly we got better at guessing, and Judah is the best charades player I know! I am sharing because Judah has not let Apraxia hold him back, and I am so grateful to every person who has had a hand in supporting us through this journey. We have years of work ahead of us, and more challenges will come, but if this past year has shown me anything, it is that Judah is the perfect name for our son, because he is mighty like a lion, fierce, and strong in ways I don't think I possibly could have been at 3 or 4. Judah also means PRAISE and I can not praise God enough for the blessing he is to us, or the sweet upbeat disposition he has kept in spite of the struggles he has had. Apraxia is a tricky word, but God gave Judah an engineers brain and each day he gets one day closer to solving this problem!
