We met Jareth and his mommy, Stephanie, last year when he was five years old at Super Play's Special Needs Bowling Night. As we have walked this journey together the past year, I was there to rejoice with Stephanie when Jareth spoke his first words and also introduce her to our Buddy Ministry at Christ Fellowship. Our boys continue to develop and learn more each day. Their little brilliant minds fascinate me. I always get a kick out of Jareth carefully lining up the red plastic dragon exactly where the bowling ball needs to go down the lane in order to knock down more pins. He's probably running math equations for perfect alignment!
In passing, Stephanie mentioned to me that she did not have many pictures of Jareth. It was part of the affirmation that we were to shift our focus to help provide Artigraphs for families whose children are on the spectrum. We invited their family to our studio not knowing how Jareth would react to the large lights and the equipment. He did amazingly well! We provided him with breaks to play at the train table and gently guided him when it was his turn. Most of the time, he was content to lay on the floor with his back to the lights and watch Thomas round the track. I think these moments are as important to document as the ones with his family. It's him! BUT it is was a victory to capture that one moment ... A brief moment when Jareth gave me that genuine smile and direct eye contact while sitting on the bench with Thomas. I knew at that moment that it would be Momma's favorite for her wall portrait. Yay! Now she has this beautiful keepsake to document her boy at this precious age - The age before teeth begin falling out, faces change, and your little boys become big boys!
Stephanie graciously shared her heart with me, so that we could tell her story - We want to shed more light on the real world of autism that our families experience each and every day. Our hope is that each story we share on this blog will build compassion. patience, and understanding in the hearts and minds of those who just don't get it. While these children may process information slower and struggle with social behaviors, they are chocked full of love, happiness, intelligence, purity, and life lessons that we can all apply to our own lives.
AP: You mentioned to me that Jareth never had his language in the early years like Bryce who regressed and lost it. Did he make any sounds at all?
S: Jareth didn't babble or coo as a baby. He didn't even cry much. We just thought we had a very content baby. He never sucked his fingers or put toys in his mouth, either. Around twelve months. he had three partial words. He said, "at" for cat, he said, "osh" for Josh, and he said, "ad" for dad. But that was it, and three months later, those words were gone. When his pediatrician recommended speech therapy, I thought all kids developed differently and he would eventually talk. When his pediatrician recommended it again on the following visit, I decided it couldn't hurt to have the evaluation done. He was approved for speech (language), occupational, and physical therapies which began this journey. The therapy sessions taught him and also taught me how to communicate, teach, and interact with him. By incorporating these things at home, it reinforced his skills and made them stronger. Jareth became verbal when he started Kindergarten. Because of his diagnosis, I was able to get him a scholarship and found an amazing little private school with a great learning environment. It is loving and nurturing, as well, and he is able to have a tech with him in the classroom with his nuero-typical peers. He was trying to talk immediately, though you couldn't understand him. Before he started going there, his lips were always closed. He would hum a lot and make squealing noises, but his mouth was always closed. At the end of his first week, he was eating his dinner. Without trying to prompt him I said, "Blow on it, it's hot", and he said, "It's hot,"! I couldn't believe it! His first new words! By Thanksgiving, he had added many more single words, including,"Mama"! B the end of the school year, he was speaking 5 word phrases, plus some spontaneous speaking as well! Thanks to all the services he was receiving, I was able to hear my son's voice, see him make friends, and watch his confidence soar.
AP: When did he receive his Autism Diagnosis?
S: Although he began therapies at 18-months, he was not diagnosed with Autism until he was four years old. He had a prior diagnosis called Arnold-Chiari Malformation, which was severe. Basically, it meant there wasn't enough room for his brain, so part of his brain was descending into the spinal canal. There was too much pressure on his brain - so much that his cerebral fluid was not flowing at all and could cause severe injury if hit too hard on head. Surgery was necessary in order to prevent such injury, help with headaches, and get everything flowing correctly. He was four when the surgery took place. We immediately noticed his balance improved, as did oral stimulation; however, he still gets headaches from time to time.
AP: What are some of Jareth's special gifts?
S: He is very gifted with words and numbers (Hyperlexic). He knew all his sight words in Pre-K and could even spell big words on his own, such as chocolate and birthday. He mastered 100-piece puzzles in Pre-K and would even pour and mix two different 100-piece puzzles together to make it harder for himself. He's a great swimmer, and he loves to build/create things. He has overcome many of his fears and is so brave.
AP: What is the best advice you received along this journey?
S: The best advice I received was that Early intervention is key to him being an over-comer.
AP: And the worst advice?
S: The worst advice I received wasn't really advice. It was merely a lack of understanding from people who think they understand Autism and think they can tell you how to handle your child.
AP: What are five words to best describe Jareth?
S: Jareth can best be described as cute, sweet, loving, smart, and FUN!
AP: Any special shout-outs?
S: Thanks be to God for blessing my son with each therapist, service, school, teacher, and person who have helped him every single step of the way, even the difficult steps. Even through those difficult steps, God helped guide us to the place where He wanted us.
Big thanks to my mom for being understanding, helpful, and giving me new patience when mine had run out.
Special thanks to Nemours Childrens Hospital and Ronald McDonald House for all that you have done for our family.