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 Spencers
Meet Josh, Jillian and Jensen Spencer. This story is written from the family’s perspective. Jensen is our diamond in the rough, our (statistically) one in a million, our winning lottery ticket. On day two of his life we knew Jensen had vision issues, at four months old he was officially diagnosed with a rare x-linked chromosomal syndrome called Norrie Disease. Jensen is nonverbal, globally delayed, fully blind and at-risk for progressive hearing loss. He is now 3 1/2 years old and thriving in school and at home.
“Jensen is our diamond in the rough, our (statistically) one in a million, our winning lottery ticket.”
Over the past year, Jensen learned to walk, so we take every opportunity with nice weather to get outside and practice walking around our court (all our neighbors love seeing his progress). We love to be outside walking, swinging, swimming, roughhousing, listening to music and story time. Jensen has a good sense of humor, is so kind/snuggly, but also the toughest kid we know. Early on in the diagnosis and early pandemic days, we felt very isolated in our new world of blind. We want to make sure no one else ever felt this way so our family started a YouTube channel called Life with Norrie Disease to help spread awareness!
images: Jensen sits with parents on ground outside on blanket surrounded by grass, Jensen in stocking hat standing outside, Jensen sitting on fence rail surrounded by parents,
Services, goals for Jensen
Jensen began receiving Early ACCESS services at 3 months old which continued until he entered preschool at 3 years old. He began preschool going half a day because we were not sure how he would adjust to a different/louder environment. He is now going a full day and he is doing amazing! One of our newest and biggest accomplishments is communication. At the start of school we found out Cheetos are a huge motivator for Jensen. They started using a switch to allow him to request Cheetos. This started in the fall. About a month ago he began to successfully ask for “music,” “drink” and “Cheetos” independently. With this progress we are currently transitioning to an iPad which is more accessible/mobile. We are over the moon to finally have a glimpse of hope of having a form of communication that works for Jensen. We are so excited to receive this iPad so we can use it at school AND home.
images: Jensen in swimming trunks sits on stairs of pool and smiles, Jensen in front of a switch box that has Cheetos on top, smiles, photo words: I want Cheetos
Challenges for Jensen, offering advice
Norrie Disease is rare and has a broad spectrum on how it affects individuals. It’s a wait-and-see scenario and Jensen appears to be falling into the more severe end of the disease. During the first two years there were so many unknowns. Jensen is at risk for seizures and hearing loss, so it feels like those things linger in the back of the mind for the first couple of years. Now at age 3, I think we have a pretty good idea where he is in his development, and we are comfortable. The idea of possible hearing loss is daunting, but I typically don’t lose sleep over it because the day for that struggle will come and for now, we are in a steady place.
Successes: The prospect of a communication device. Jensen is getting significantly better at walking. Though he is still unsteady, he can walk further than he could a couple of months ago. We are so proud of Jensen and his ability to explore our home and new places. He is cautious but not timid. So overall if I had to choose what I’m the proudest of, it’s his ability to explore and how tough he is when it comes to pain. Biggest advice I can give is to not be a “helicopter parent.” We let Jensen fall and hit his head (of course we try to make sure it’s never to an extreme or serious damage). Ninety percent of the time that Jensen does something that makes you hold your breath, he ends up pausing, brushing his hands off, or rubbing his head all while with a smile on his face. Oh! And get out of your comfort zone.
We have hesitated taking Jensen on vacations because of the unknown/stress of what ifs. What if it doesn’t go well? What if he gets sick? What if he has a meltdown in a public setting? Every time we have stepped out of our comfort zone, Jensen has proven to us he does fine and it’s the parents who need to unwind and simply TRY.
Self-care: It has taken years for our family to find a healthy balance. We make sure we prioritize fitness, whether this is at the gym, coed sports or exercise equipment in the basement. We also have our individual outings of recreational sports or game nights with friends. However, the biggest self-care comes in the form of mental health. I could write a lot about this, but in short, having a good support of friends and family is important. But, having a counselor and medication, when prescribed, is a game changer. I, Mom, put off medication for depression for a long time because I did not think I fit the label of “depressed.” However, depression comes in many different forms, and I couldn’t be happier with the decision to start on an antidepressant. Advice: be open and educate yourself. People with “typical” situations or children might not know what it is you’re going through or how to help you. Don’t feel like you need to justify your feelings or downplay what you’re going through. You can’t help others if your cup is empty.
Resources: being open to opportunities, speaking to other families, educators, social workers. You don’t know what is out there for resources until you hear from word of mouth. Always ask questions and advocate.
images: Jillian in running even holding sign Life with Norrie Disease and her social media accounts, Josh and Jillian with Jensen in stroller, Jillian holds Jensen, she has on a mask, words: balancing fitness and special needs parenting plus a trip to the ER
How IESBVI staff have helped
Being a first-time parent is scary, but there is no book for what to do when the unexpected happens. We would have no idea where to begin if it wasn’t for our IESBVI/AEA family. When Jensen received services from Early ACCESS, those in-house services were a game changer. My form of parenting and how I interact/speak to Jensen has been completely molded and shaped by the services we received. By being a vlogger on YouTube I have had the amazing opportunity to chat with people around the country and around the world. What I have learned is we have been very fortunate with the care Jensen has received, especially compared to the rest of the world. Everything happens for a reason, and we feel so blessed to be where we are with the care we have received. I am forever grateful, thankful and blessed by our AEA family.’
images: Jensen on top of snow in snow gear, Jensen with a cane trainer, dad holds Jensen and mom stands beside them
