April is Autism Awareness month, so we asked one of our Therapy SPOT families to share their thoughts and experience with autism with you.
Autism spectrum disorder and autism are terms for a group of complex disorders of brain development. The disorders are characterized in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors, according to Autism Speaks, the world’s leading autism science and advocacy organization, www.autismspeaks.org. April is National Autism Awareness Month and we would like to share Harrison’s success story so far.
They say if you’ve seen one child who has autism, well, you’ve seen one child who has autism. While each child is unique, families with children who have autism share common challenges, goals, and dreams and they overcome obstacles in their own unique way. We are one of those families. Autism doesn’t look like anything but the way it looks. It doesn’t always look like Rain Man. It doesn’t always include hand flapping, rocking, or issues with language. Sometimes it does but, sometimes it doesn’t.
On January 26 2012, Harrison, our pride and joy was born. He was so excited to see us and the world that he was born four weeks early. Harrison was such a good baby that rarely cried or fussed even when he was wet or hungry. We would often have to wake him to feed him. I remember asking my mother who ran a daycare for many years if she ever had a baby that was this good.
I had everything planned out for Harrison but life does not always go as planned. Through reading various baby and parenting books and referring to Dr. Google we discovered that Harrison was about a month behind on hitting the “milestones” such as holding up his head, rolling over, and sitting up. We as parents had convinced ourselves he was behind because he was born a month early, but later were told that does not factor in to reaching milestones.
Harrison loved his jumperoo! He would jump and spin the spinners like no other child you have ever seen. At the time we were amazed at how fast he would spin the spinners and for the length of time with such control. His dad being a coach was really impressed with his hand eye coordination. We never thought of it as being a sign. Harrison was also one that would take a toy that had beautiful colors on the front and turn it over and study the back of the toy to figure out where the music was coming from.
Harrison was saying ma ma and da da at ten months and of course we were excited. It was around this time that Harrison out of the blue would have these really quick nods with his head. We were obviously scared thinking he was having mini seizures. Being first time parents and wanting the best for Harrison we saw a neurologist and had an EEG. The results from the EEG said that Harrison had lots of brain activity and the nods were tics not seizures. During the months that followed with tics we as protective parents were scared to encourage Harrison to walk fearing the tics could cause him to have a bad fall. Through prayer and God’s grace the ticks only lasted a few months and disappeared as quickly as they had appeared. Then we focused on walking which was mastered at 17 months and Harrison has not slowed down since!
As parents we felt something was just not right so we started asking questions to Harrison’s pediatrician at his 18 month check up and realized that he was displaying signs of autism and developmental delays such as late holding his head up, rolling over, sitting up, walking, no eye contact, spinning toys, etc. He was no longer saying ma ma and da da. We were asked to fill out the M-CHAT which is a series of questions that help determine if you are at risk of autism. The M-CHAT does not provide a diagnosis but can aid in early detection and indicate if a child should seek further evaluation. As a mother, I can remember crying for days because this was not part of my plan for Harrison. After about a week, I realized it’s not about my plan but God’s plan so I started making appointments with every doctor I thought could help us help Harrison. We scheduled another appointment with the neurologist but she still was not ready to diagnose Harrison with autism but did want to do a genetic test. She swabbed Harrison’s mouth and ours. When the results came back we learned our unique little boy has a very unique gene duplication called 22q11.21. The gene duplication is so rare that it does not have a name and at the time of the results through research there was only one study of 100 cases in the UK. We then decided to see a gene specialist that had been practicing for 30 years plus to try and learn more about 22q11.21. He should have had paid us (haha) because we knew more about 22q11.21 than he knew from our research at home.
The focus of any parent is your child and how to help them be successful. That challenge is taken to a whole new level with an autistic child. Harrison started receiving speech services around 18 months old. The speech therapist after a couple of months of working with Harrison said to us that Harrison needed more than she could do and suggested ABA. What is ABA….? We researched ABA which is Applied Behavior Analysis and discovered that it has helped many children with autism become more successful so we went to work trying to find ABA therapy for Harrison in our area. When Harrison first started ABA therapy it was not covered by insurance so everything came out of pocket until the passing of Ava’s Law which requires insurance companies to pay up to $36,000 in therapy per year. Many thanks to Ana and Ava Bullard for all of their hard work for these unique and special kids. Through the ABA journey we have seen some really good therapists, some that were very strict and some that did more therapy through play which helped Harrison become well rounded and not programmed like a robot. Harrison in his young life has seen various speech therapists, occupational therapists, ABA specialists and has often worked 30 plus hour weeks at the table in the makeshift therapy/laundry room just to try and catch up to typical children his age since age two.
Harrison knew his alphabet at two years old and numbers 1-100 by three years old. He loves to look at books and have you read them to him. If a word is missed he will not let you flip the page until the page is read correctly. Harrison is believed to have Hyperlexia and has been reading since he was two and half years old. Hyperlexia is characterized by a child’s precocious ability to read (far above what would be expected at their age), significant difficulty in understanding and using verbal language (or a profound nonverbal learning disability), and significant problems during social interactions.
Our journey with our 6 six year old nonverbal little boy through ABA therapists, speech therapists, occupational therapists has at times been a long, stressful, and emotional ride. So many times when we have lost a therapist for whatever reason we have wondered what are we going to do? We turn to God because we know He has a special plan for our unique little boy. This journey has led us to the Therapy SPOT in Statesboro. We drive over an hour every Tuesday and Thursday so Harrison can receive the best therapy from Mrs. Lea and Ms. Olivia. The Therapy SPOT has helped Harrison in so many ways from feeding issues because of texture issues to a communication device so we can communicate with our little boy. We always receive notes from sessions so we can pass those notes along to his therapists at school because repetition and everyone being on the same page is critical for children with autism. The Therapy SPOT helped us get the Accent 800 from the Prentke Romich Company which is a device dedicated solely for communication. Thank goodness for insurance that covered the purchase of the device. Until we got the communication device we were using Harrison’s ipad with the LAMP app which is a communication app that uses a therapeutic approach using motor learning principles and voice output communication aid to give nonverbal individuals with autism and other developmental disabilities a method to develop independent and spontaneous communication. With the LAMP app on the iPad Harrison learned one word responses or request for items. Unfortunately, Harrison didn’t see the iPad as a communication device but he saw it as fun and a source to google and Youtube so no real communication took place with the iPad. The communication device uses the same LAMP software and setup as the app on the iPad so it was familiar to him. The first day we had the communication device we showed Harrison how to request “I want chocolate milk” when he had been just pointing or bringing the milk to us. The next morning at 5:00 am we hear the communication device say “I want chocolate milk” of course that boy got him a cup of chocolate milk. Since that morning Harrison has requested I want Chuck E Cheese (loves to go to Chuck E Cheese), I want iPad please, I want eat pizza, I want iPhone please, I want iPod please and open door play outside. So as you can tell communication is blossoming with the device and we look forward for what is to come in the future. He has even shown teachers at school where things are located on the device lol. He is one smart little boy!
Harrison is currently in Kindergarten at Treutlen Elementary School and having a great year. He is one of the top students in his class and having a successful year even with all the obstacles he has had to overcome to this point. This success is because of the great team that helps Harrison at school and away from school that work closely together to help him be successful. Every parent wants to see their child bring home a 100, but when your autistic child that you have seen over come so many barriers and obstacles brings home 100’s on a weekly basis it makes your heart swell cause you are so proud of him and the work he has done to get to that point.
Autism so many times has a negative stigma attached to it because so often people don’t fully understand it, but having a son with autism has shown us what truly matters in life. Harrison’s struggles and successes have shown us to enjoy the small victories in life and to enjoy the journey and not be so obsessed with the destination because if you are you will miss out on so many of the laughs, tears, accomplishments that takes place during the journey. Harrison has come along way since he was first diagnosed at 18 months old and has had so many successes. As parents of an autistic child, we know we still have many obstacles to overcome in our family’s journey with autism but with prayer and God’s direction there is nothing we can’t overcome. We are extremely proud of our happy, lovable, compassionate, and truly unique little boy!
Misty and Brad C.
If you have questions about your child’s development, we encourage you to have a conversation with your child’s pediatrician as soon as possible. Harrison’s story could have been much different if his parents had waited a few years to get him the help that he needed. Early intervention is so important!
The Therapy S.P.O.T. – Speech, Physical, and Occupational Therapy
Our multidisciplinary therapy center was established in 2007, and is committed to providing quality therapy services in a fun, family and child centered environment. We provide pediatric speech, feeding, physical, and occupational therapy as well as adult speech and swallowing therapy. Our therapists have unique and specialized skills and training, and we strive to pair our patients with the therapists who will best meet their specific needs. You can learn more about our services at http://www.therapyspotstatesboro.com. Questions or concerns? Call us at (912) 681-7768 for a free consultation.