Weston will officially enter his teen years this May, making this his 13th year as a Grandview Kids client! Weston lives with his mom, Krystal, his dad, Gannon, and 9-year-old brother, Jase. Weston loves all things Lego, Diary of a Wimpy Kid books, joking around, creating inventions and, of course, his iPad. He is sweet and affectionate, always giving his mom unexpected kisses on the cheek or hand, but he is also ready for a good couch pillow battle with his dad or spending hours jumping on the trampoline. Although a bit of a homebody, he will jump on the opportunity for a family trip to the Lego store, McDonalds or indoor waterpark. Weston is also fascinated with things from the past, including the original Game Boy, old cartoons/shows, what grandma watched or did when she was younger, VHS tapes and sharing random facts he learns. Since Weston looks like a typical kid, it makes it challenging for people to fully understand his needs, respect his boundaries or forgive his lack of a filter due to his diagnoses.
Surprising his parents with a birth diagnosis of Spina Bifida, he had a hole in his lower back with his spinal cord sticking out, which was corrected through surgery shortly after birth. After further genetic testing prompted by having multiple anomalies, including a heart defect and eye issues, and not meeting many developmental milestones, he was officially diagnosed with Rubinstein Taybi Syndrome 2 (RTS2) in 2020. RTS2 is a rare genetic disorder, and in Weston’s case, caused by a partial gene deletion. 1 in 125,000 are born with a form of RTS and in most cases, like Weston’s, it is not inherited from the parents. Behaviour issues are well associated with his syndrome as well and although it was always suspected, he wasn’t officially diagnosed with autism spectrum disorder until this year.
Grandview Kids has been a part of Weston and his family’s lives since he was a baby. He has received services for physiotherapy, occupational and recreational therapy, speech-language pathology, social work, and hearing, eye and medical clinics. He also attended Grandview School for junior and senior kindergarten. In more recent years, his family has benefited from the Family Engagement Team’s inclusive events where whole-family care is at the forefront.
As a parent of a child with physical, communication and developmental needs, it is sometimes difficult to track progress, especially when measured against peers. When Krystal thinks back on how far Weston has indeed come, it is a marvel to wonder at. “He went from zero words to talking sentences while attending Grandview School and receiving weekly therapy and continued support from special education teachers,” says Krystal. “He still walks robotically, and his reflexes will always be an issue, but he is getting better. Weston has some physical barriers that he may never overcome, just because of his body makeup. But, continuing to receive blocks of therapy and support from Grandview helps.”
Although Weston’s physical disability will remain an obstacle, his biggest challenge right now is integrating properly with his peers due to his intellectual delays and behaviour issues. Like many children with ASD, he is intelligent. Still, his parents believe he will continue to fall behind his peers without more services available to him for his age and with his abilities, especially as supports in the education system continue to be an uphill battle.
Krystal would love to see more donor-funded programs at Grandview Kids for kids like Weston. Programs that help participants become more independent while also experiencing a safe place to learn how to utilize social strategies in everyday life. While there are many paid-for recreational programs for children and youth with ASD or other conditions, many miss out on these opportunities because of a lack of funding or long wait lists.
“A lot of parents don’t have the extra funds for programs that would be beneficial because the fees for these specialized services are so high. Also, in many cases, parents are unable to work as their child’s needs are too demanding. Some programs also have restrictions, such as ‘your child must not have certain behaviours or they must be self-sufficient to participate’. There are regular programs offered within our community, but only some offer inclusion services, again, with restrictions. In regular programs, other children have a hard time understanding Weston and his needs, which often makes him feel left out. Integration is just not the reality in most cases, kids with similarities get along better with kids who understand [them],” notes Krystal.
Krystal and Gannon will continue to advocate for Weston and children like him. They know that with the support of donors in the community, his successes are possible. They also know that his full potential is yet untapped but can be with the expansion of much needed services and programs at Grandview Kids.
