Childhood Apraxia Research Paper

September 14, 2011 was a very special day. My parents had been trying to conceive another child for 4 years, and it had finally happened. At the time I was 10, and I did not understand why our parents wanted another child. I was still trying to deal with my other two siblings, and now I would have to deal with three. My sister, Avery, was stoked at the thought of another sibling. She dreamed and prayed that it would be a baby girl. She was sick of trying to bribe me to play dolls with her, and needed a new companion to force into Barbie games. My brother, Brody, had no idea what was going on till my parents brought home a baby. He was the most oblivious 6 year old on the planet. My dad was the most excited. My mom and dad were unable to conceive

my new baby brother naturally, and had to have a procedure to do so. My dad gave up his second favorite thing next to my mom. He sold his motorcycle. For him, this was the all time sacrifice. Although he was sad about losing his motorcycle, it was us kids that threw the biggest fit. That motorcycle was everything to us. It was a birthday tradition to ride with my dad to a birthday breakfast every birthday. That tradition was ripped from us is a moment of seconds. The day my baby brother was born was absolutely chaotic. It was picture day for the elementary, and I was determined to look my best. My mom was about half way done with my hair when she had to be rushed to the hospital. Needless to say, I looked like a mess for my pictures. My father picked us up from school, so we could go greet our new baby brother. Avery was devastated at the thought of another brother. It was weird to walk in and see my mom in a hospital bed. My mom is such an independent person, and one of the hardest workers I know. It was rare to see her resting. Our parents informed us that they decided to name our new baby brother Ben. As soon as the nurse walked in with the bundle of pureness I knew I was in love. It was weird to feel so strongly about someone I had just barely met. I was determined to make Ben love me. We live next to my dad’s side of the family, so we constantly had family at our house holding Ben. I was a very controlling 10 year old, so I would always make sure they were holding him just right. It was my new found responsibility to make sure that Ben was always happy. As Ben progressed in age, my mom started to notice that something about him was different.

My aunt Cassie had had a baby around the same time as Ben. When compared to my new cousin HayLee, Ben was progressing a lot slower. My mother and father had finally agreed to take Ben to a doctor. After numerous test, the doctor informed my parents that Ben has Apraxia. Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts needed for speech. I didn’t understand any of this till I was about 14. I just remember walking in on my mother kneeling at her bed praying and crying. It was hard to watch her in this stage. My mom didn’t know how to handle this situation handed to her. It was rough for our whole family. As I watched Ben try to communicate with his cousins and friends, all I wanted to do was scream. I had vowed to make sure Ben was always happy, and now I had to watch him get rejected by his peers. The worst part was that there was nothing I could do. My parents had raised us to turn to God when we are facing trials, but all I could do is question

him. Why in the world would someone so perfect have to face a trial like this? Now that I look back on it, I realize that it was defiantly not the worst case scenario. As the rest of us were mad and angry, my mom was determined. She spent countless hours researching the best therapist and treatments. It was then that I realized Ben was born to the perfect family. My mother was a real superhero. She drove him to therapists, doctor appointments, and countless ice cream sessions. By the age of 3, Ben had learned to communicate through sign language and pictures. Everyone in the house had to learn some baby sign language. It made me feel super cool to show off all my baby sign language to my friends at school. My mom had made Ben pictures to bring her when he was in need of something. Everything was going perfect, and you could see that Ben was progressing as well. It was at the age of 4 when he would have to face another great trial. He was attending another mandatory doctor’s appointment, when they discovered something new. Ben had a heart defect. He had a small hole in his heart, which made it hard for him to breath. He would need a surgery to place a gore helix septal occluder to close a 20mm ASD. It was probably more traumatic for my parents than it was for Ben. Luckily, they had found a more than qualified doctor. She would enter through Ben’s thigh and move her way up to Ben’s heart. When my mother asked her if she enjoyed her job, she replied with a very happy yes! She told my mother that it was like playing a video game. The surgery was very successful, and Ben was stoked to get to stay overnight in the hospital. He was even more stoked to finally get to eat. It blew my mind that you couldn't eat before a surgery. Food is super important to me, so I’m going to avoid getting surgery for as long as I can. Ben was a happy 4 year old! After his surgery, our community came together and helped raised money to pay for his surgery. It was a huge blessing is more than one way. The students running the fundraiser would come and visit Ben, which he absolutely loved! As my siblings and I walked throughout our local high school, we got to see posters of Ben. Some of the students sold bubbles, gum, necklaces, and posters. Ben doesn't know it now, but he is so loved not only in our family, but throughout our community. Ben continued to go to therapy, and he started to communicate using his words. It was hard to come home and not have my mom waiting for me with a hug, but it was so much fun to watch Ben progress. Ben’s favorite therapy is hippo therapy. Hippo therapy is the use of horseback riding as a therapeutic or rehabilitative treatment, especially as a means of improving coordination, balance, and strength. It is the coolest thing to watch! He attended hippo therapy at the National Ability Center in Park City. You will meet the kindest people in the whole world there. Ben’s horse, Lily, was a gentle giant. You can tell that Ben has a special connection with her. As he’s gotten older, he’s been introduced to a lot more horses. Ben was about to turn 5 when we found out he didn’t have Apraxia. We were told that Ben has 22q11.2, which is a deletion of a small piece of the 22nd chromosome. It was kind of traumatic to find out that Ben didn’t have what we thought he had. It was defiantly a big transition to find out what treatments he needed. My parents are big time runners. They’ve each ran marathons and tough mudders. My mom is more into tough mudders, while my mom is more of a marathon runner. While running a marathon, my mom met a man named Wan Ho Kou. Wan Ho Kou is the most amazing person you will ever meet. When he heard about Ben, he organized a 200-mile run connecting the 12 temples belonging to The Church of Jesus Christ of Latter-day Saints from Logan to Payson. He decided to call the run "The Temple Run 4 Ben" and raise funds with his efforts. My parents participated in a few of the legs of the run, and were extremely grateful for Wan Ho Kou’s efforts. He was a huge blessing in Ben’s life! KSL did a story on Wan Ho Kou and Ben, which raised even more awareness. Wan Ho Kou made a huge impact on our family’s life.