Hello! I am a 32 year old mom to three of the most energetic, wild, playful, loving, sensitive, curious, adventure seeking boys ever born! I’ve been married to my husband for almost 12 years, and have been a stay at home mom for the past 10 1/2 years. I have recently moved my family from the mountains of Utah to the beautiful island of Oahu. We don’t know a single soul on the island, so we have created a really unique bond with each other because we’re all we have out here! My day-to-day routine totally opened up mid October when ALL my boys started going to the same school–at the same time– Changed. My. Life. So when my boys are at school I go to the beach with a good book, hike, run my errands without my wild animals, and most importantly, spend quality time with my husband! I think my biggest strength as a mom is my “go with the flow” attitude. It takes a lot for me to get stressed out or angry. I’m pretty easy going and can adapt quickly to all the spontaneous events that happen in my life!
What is Apraxia? Can you share with us a little bit about your sweet boy Evander?
My youngest boy, Evander, has Apraxia of speech. Before he was diagnosed I had never even heard the word Apraxia before! Childhood Apraxia of speech is a motor speech disorder. His brain has a disconnect when it comes to planning the movements his body needs to make in order to create sounds, syllables, and words. The easiest way to explain it is comparing it to a stroke victim. The person knows mentally what he/she wants to say, but the brain has difficulty coordinating the muscle movements necessary to say those words. Many times with Apraxia there are other developmental problems as well. Evander has delayed motor skill abilities- things like holding a cup and sipping water, drinking through a straw, holding utensils, getting himself dressed etc, are virtually impossible for him right now. Sensory issues are also a part of his Apraxia. Being overstimulated by loud noises, certain textures of food, clothes, brushing his teeth and hair make life extremely hard for him. He also has behavior issues stemming from his disability. This is where my heart really breaks for him. I couldn’t even begin to imagine how frustrating it must be to know what you want and need, but not be able to communicate it to anyone.
When did you begin to see that something was different about Evander’s development?
It was a little after he turned one that I started suspecting something was going on with EV. He wasn’t interested in food at all, and when he did try to eat solid food he would either choke or projectile vomit- or both. When I brought up my concerns to our pediatrician, he suspected it was a severe case of acid reflux and told me he would grow out of it. Well, by 18 months he was still vomiting daily, and this is when I started noticing that he was pretty far behind in his speech. I brought up my concerns at his 18 month check up, but left feeling like I didn’t quite get my point across that I thought something might be very wrong with my baby. I was told to just wait it out; that he was probably just a slow learner, and he’ll eventually catch up in his own time. I knew in my gut that Evander was different. But a part of me was so scared to find out. I battled everyday with myself with the thoughts that he was fine- just wait a little longer to see if he’s a slow developer- and then the other part of me screaming that I was being a bad mom for not scouring the world for answers. I was frightened for him. And me. And my family.
What was the process he went through getting diagnosed with Apraxia? What are the therapies needed to help?
My mom was the biggest factor for finally pushing me into the scary unknown world of Apraxia. She would call every single day and ask if I had made those phone calls to the speech therapists or if I had contacted the Early Childhood Intervention division. She had been a special education teacher for years and her knowledge of children with disabilities strengthened me and encouraged me to finally seek answers. At three years old, I took Evander to his first(of many) evaluations. After hours of torturous testing, the therapists diagnosed him with Apraxia of Speech. I was suddenly thrust into a world of speech therapy, eating therapy, and occupational therapy. I researched everything I could about his diagnosis.I spent many nights crying for my son because I didn’t know what his future would hold for him. I realized though, that I was having a pity party for myself. Evander is a happy, loving, smart little three old boy who just wants to have fun and play! I needed to just pull myself up and go forward with hope and positive outlook on his disability. I became his biggest advocate. Evander is now four years old and goes to a special education preschool where he gets one on one personalized therapy everyday. The process of getting him an IEP took months of more testing and evaluations, and the process was extremely frustrating, but it has been the best thing to ever happen to him. He has made so much progress since starting his special preschool. Every little achievement is celebrated like he just won a gold medal in the olympics! There’s nothing I love more than seeing him overcome an obstacle in his disability. I have a special place in my heart now for parents with disabled children. It is really hard work. It’s hard emotionally, mentally, physically, and spiritually. We have to be strong even when everything around us seems to be crashing down, and there’s no end in sight or so many questions that can’t get answered. It can be very overwhelming. That’s why it’s so important to talk about your struggles with your family, therapists, friends, and even support groups online.
How does communication work between Evander and the family?
We are learning as a family how to live and communicate with someone who is nonverbal. It requires an immeasurable amount of patience, and my boys impress me everyday with their ability to treat Evander like there’s absolutely nothing wrong with him. A couple weeks ago as I was walking my boys home from school, a man came running out of the office and said he needed to tell me something. He is a guest speaker who goes to the school every Wednesday and holds a community meeting with the children where they get to discuss topics, ideas, and opinions openly with each other. That day they talked about bullying. He told me that Maddox explained to the group that you should always be kind no matter what because sometimes you don’t know what hardships and struggles some kids are going through because they look fine on the outside. He explained that his little brother has a disability that makes it hard for him to talk and behave, but you would never know by just looking at him, and he just wants to be like everyone else. I cried all the way home. I’m tearing up even now trying to write this story. And Remington loves to try and teach Evander new words- especially words like butt, fart, and any other potty word you can think of! It seriously warms my heart though so much when I hear one of the boys get excited if EV says a word they are teaching him. And Garrett. The love and compassion that my husband gives this little boy is endless. I truly believe Evander was meant just for me, Garrett, Maddox, and Remington. Our little family has forever been changed by Evander. He brings us so much joy and laughter everyday. Because he lacks the ability to speak, his personality has been magnified a million times, and we all just love him so much.
What is your hope for Evander?
We have a long road ahead of us. Every case of Apraxia is different, and we just don’t know what the future will look like for Evander. I’m hopeful though. Even if he struggles with his speech for the rest of his life, I know he’ll be ok. He has an amazing support system around him that will be with him forever. All I want for him is what I want for all my kids- to be happy, to be healthy, and to live a life full of love! He is one amazing kid and I’m thankful everyday that he’s mine.
Thank you Juliet for sharing your story with us! Your family is beautiful! There is no doubt Evander will do amazing things in life with a mama like you and the wonderful support of your family.