IESBVI families – you are not alone! All families experience struggles and successes. We see you, and we value you. IESBVI families will be highlighted regularly so other families can feel supported and connected.
Meet the Smiths
Meet Jordan (dad), Jessica (mom), Taylor (6) and Trevor (3) Smith. This story is written from the family’s perspective. We enjoy traveling, being outside and staying active. Jordan likes to cook and try new recipes from other cultures. Jessica finds peace in long nature walks. Taylor loves playing with friends and trying new sports. And Trevor is fascinated by watching wind chimes and bubble blowers.
Trevor was the 508th person in the world ever diagnosed with this syndrome.
Trevor was born with an ultra-rare genetic syndrome, DYRK1A Syndrome. We did not get this diagnosis until after he was born, at 5 months old. His syndrome was not inherited. It was a random occurrence that happened at or immediately after conception. Trevor was the 508th person in the world ever diagnosed with this syndrome. Today, three and a half years after his diagnosis, there are 780 individuals world-wide with this syndrome. Much is still unknown about this syndrome, but for Trevor it manifests with the following diagnoses: aberrant right subclavian artery, aortic valve stenosis, autism, chronic constipation, cortical visual impairment (CVI), epilepsy, feeding tube dependency, GERD, global developmental delay, intellectual disability, microcephaly, muscle tone differences and a susceptible immune system.
When Trevor was almost 2 years old and not walking, the AEA early access physical therapist taught and encouraged him to use a gait trainer. Once he got the hang of it we noticed he was constantly running in to corners, walls, tables, etc. The physical therapist started wondering if his vision was impacting his gross and fine motor abilities. When a teacher of the visually impaired from IESBVI met Trevor, she immediately had ideas for his therapy team to try and she referred us to an orientation and mobility specialist with IESBVI.
Learning to navigate Trevor’s world
Trevor’s individualized family service plan team grew in the months leading up to his third birthday. Having experts from a variety of professions collaborating and helping our family learn more about the ways Trevor navigates his world was incredibly helpful. Trevor is nonspeaking and therefore cannot easily explain what he sees or what he needs.
The teacher of the visually impaired (TVI) and orientation & mobility (O&M) specialist from IESBVI provided materials for Trevor to explore to determine his visual preferences, supported the speech language pathologist team when determining appropriate visuals and accommodations for Trevor’s AAC device, painted playground equipment at his school to help him navigate that environment, and they work closely with his school staff to find ways to keep him safe from falls/bumps and engaged with visual materials in the classroom.
Pictured below is Trevor engaging in his favorite activity- watching windchimes. Trevor has always loved watching things move or spin, especially bright/shiny things. He enjoys spinning/waving at them himself, but much prefers to have someone else do the action so that he can watch. There’s something so visually appealing about this to him that we’ve set up some windchimes inside our house for him to play with. He will find many different ways to examine the windchimes- up close, from far away, laying down under them, peeking through his fingers, peeking through a mesh laundry basket, holding up colored magnet tiles in front of his eyes, peeking through the crack in a door between the hinges. He is infinitely curious about observing his favorite things through different perspectives.
Having a child with medical complexities comes with challenges we cannot always predict. Having a child who cannot communicate or safely navigate the world generates fear, anxiety and sometimes heartbreak. Our family has created a new normal-far different than most of our family and friends’ experience. For example, it’s normal for our family to carry around a backpack containing rescue seizure medications, it’s normal for our family to decline or leave early when invited to events that would overstimulate or not be safe for Trevor, it’s normal for our family to feed our son via syringe to his g-tube at a restaurant instead of ordering a kids meal for him, and it’s normal to have the same very noisy repetitive toy on repeat all day long and be able to tune it out.
Self-care is a topic widely emphasized, but narrowly described. Families like mine have difficulty finding babysitters or respite providers that are comfortable watching Trevor. We ask each other permission to leave the house to get any self-care, or even to run errands, because it feels selfish to leave the other parent to watch the kids alone. Trevor needs near-constant supervision leaving his sister with less attention. Look up the term “glass child” to better understand our fears for Taylor. We are so fortunate to have recently moved to a neighborhood that has children near Taylor’s age and they love playing together. She doesn’t have a “typical” sibling relationship, but she has many close friendships. Something wonderful about the neighbor friends is seeing how they have learned to love Trevor too. They’ve watched us interact playfully with Trevor and we have explained his needs in a way they can understand. They accept him and he is thrilled when they come over to play.
Our hopes and dreams for Trevor are simple. We hope that he can be healthy. We pray for his quality of life to not be negatively impacted. We dream of the obstacles that he can conquer from having a loving and supporting family and team of teachers and doctors. We do not have all of the answers, but having a tribe of people rooting for his success certainly helps him thrive.
One tip for families: Ask questions. If someone on your child’s team doesn’t have an answer, ask them who they think might know the answer, and then have that person join your team. The more brains and access to resources, the more confident you can be that you’re giving your child what they deserve.
How IESBVI staff help
Having team members from IESBVI has been a game changer. I have no clue where these professionals’ experiences come from, but they have ideas and resources for their students that are above and beyond what I’ve seen from school districts. (Jessica is a speech language pathologist with the AEA). Their perspectives on student abilities are so unique that they are invaluable assets to an IEP team and family. Above all, their passion for their job and the students is obvious in every interaction. The IESBVI members of Trevor’s team have been excellent at advocating for his needs during IEP meetings. We are so appreciative to have them on this journey with us.
