Travis was born in 1998, just two days after his oldest brother, Dylan, turned 3. His other big brother, Austin, was almost 2 years old. Travis was healthy and we brought him home and began to imagine how our life would be with our three sons, close in age and likely doing many things together. Now our boys are 16, 15, and 13 years old, and our life is quite different than the one we imagined 13 years ago.
Travis was a very healthy, content baby that rarely cried. He seemed to watch what was going on around him, but he didn’t really reciprocate with much emotion or interaction. By four months of age, we were concerned that something was wrong. By six months, we were sure something was wrong. He still could not sit well and was not babbling. We ran several tests and visited a neurologist who diagnosed Travis with hypotonia (low muscle tone), but could not give any other diagnosis. We began early intervention services for occupational therapy (OT), physical therapy (PT), and speech therapy. We waited for the results of several blood tests.
A test for Fragile X syndrome had examined Travis’ chromosomes and found something unusual. Just a week before Travis turned one, we met with a geneticist that provided the diagnosis of isodicentric chromosome 15, now known as chromosome 15q duplication syndrome (dup 15q). At that time, there was very little known about the disorder. We were only provided with the name of Donna Bennett, who lived in Pennsylvania and had a son with the same condition. We called Donna the next day, and our journey began with our new dup15q diagnosis. Of course in 1999, the dup15q community did not have a website, BigTent, or any way to easily connect with its members.
While many of our questions remained unanswered, we were relieved to have a name for Travis’ condition and to at least be reassured that he could live a full life. Of course, it was not going to be the life we had envisioned with our three little boys only a year before. So, we continued with the many therapies. By 15 months, Travis was cruising and at 24 months he began to walk. Once Travis could walk, he began to climb! He appeared clumsy and awkward while walking on the ground, but once he climbed onto the arm of the couch, he could balance like a gymnast. While the physical achievements progressed, he continued to be nonverbal.
Travis attended a private preschool for children with “communication differences” for three years. Each classroom had a speech therapist in the classroom all day as one of the teaching staff. After two years with intense speech therapy, the speech therapist diagnosed Travis with verbal dyspraxia. Basically, he lacks the oral motor planning needed to form words. We started using a simple augmentative communication device with him. Due to his language delays, Travis also received a diagnosis of autism.
At the age of seven, Travis moved to a new school for children with autism and multiple disabilities. In this school, Travis has thrived. He has an aide throughout the day. He currently has five other classmates along with three teachers in addition to his aide. He started using a touch screen on the computer a few years ago, but now can easily manipulate a mouse. Travis has used a combination of signing, gesturing, sentence strips, and simple AAC devices for communication. This year, he moved to a new AAC device called a SpringBoard Lite. He now has a voice to answer questions, make requests, participate in class discussions, and express his emotions. This is a new and significant step for him, and he is exceeding our expectations daily. Travis will age out of his current school at the end of this school year, and we are in the process of looking at new schools. His next program will begin to address job skills and work in the community. We have worked diligently with our school district, and they have been extremely supportive of our efforts to find and place Travis in appropriate educational settings.
We continue to work daily on self-help skills with Travis. He can dress himself with assistance and is toilet trained on a trip schedule. He does sometimes initiate and this is a focus for us. He wears underwear during the day and pull-ups at night. He eats a healthy variety of foods and feeds himself mostly independently, but will still stuff his mouth. He can eat a banana in two bites! We still have to bathe him and brush his teeth. Travis likes to play games on his computer and watch YouTube videos which he does independently. He also likes to watch TV and videos while jumping on a Bosu. Travis sleeps in his own room on a platform bed and generally sleeps from 8pm-6am.
Travis has been ice skating, roller skating, bowling, snow tubing in the Poconos, rafting down
the Delaware River, to Disney World where he loves the rides, to Myrtle Beach, South Beach,
Cancun and Fort Lauderdale where he enjoys swimming in the ocean, many times to Arizona
to visit with family, and often down the Jersey shore. Four years ago, Travis traveled with us
to Europe. We visited France, Germany, Switzerland, and Italy. He walked many miles and
adjusted to the time change easier than I did! He enjoyed the trains and especially the food in
Italy. In addition, Travis has attended countless soccer games, basketball games, and
baseball games for his brothers.
The best things about Travis are not what he has done, but who he is. He is a handsome, strong boy with intense brown eyes. He skips when he is happy, jumps up and down, and has a contagious laugh. He is almost always happy. He gives big hugs and lots of kisses. He loves music from classical music to songs from Blues Clues, Barney and Dora. He thinks Elmo’s World and Mr. Noodle are very funny. He can figure out electronic devices faster than most adults. He can swim and loves the waves in the ocean and warm sand. He loves animals and has a gentleness in their presence that they seem to understand. Last year, he competed in the softball toss for Special Olympics and threw the softball almost 2 meters, good for a Bronze medal! He works very hard to achieve every milestone and continues to gain skills at a slow but steady pace. He remains seizure-free so far!
Travis’s biggest supporters are his brothers. They guide and encourage him and have shown the community that having a brother like Travis is a special privilege. Some days are more challenging than others, but Travis has led us on a journey where we have learned that sometimes the easiest path is not the most rewarding. Life with Travis is a very good life!