When Life Throws Curveballs and The Resources to Help
In support of
Rowan Wallace and Family
View Support Registry
Rowan Wallace and Family
Hi all! Thank you SO much for being a part of #TeamRowan and for all your support so far! We’ve raised above and beyond what we ever anticipated possible (59% of the way there!) for a handicap-accessible van for Rowan. Today, I wanted to share a little bit about Rowan’s unanticipated journey into the world and the resources out there to help families with children with disabilities. It’s a long one!
When effectively acquired and utilized, these resources can be the difference between a functional/manageable/even joyful life as a family with a child with special needs and a life of significant financial, mental, and physical stress that can sometimes lead to the child having to be institutionalized. I’m not writing this update to be depressing but to provide the facts about the resources out there that are a lifeline for families, regardless of financial status. No one plans to have a child with disabilities, but this is a risk, and I’m so grateful to the people before me who cared enough to pave the way for these resources. This allows Rowan to be at home with a loving family, obtain the medical care and durable medical equipment he requires, and pay for amazing caretakers that love on Rowan and give mom and dad some time to rest.
Rowan’s Birth Story
I found out I was pregnant with TWINS after we had just started moving into a new home and in the middle of COVID. My twin pregnancy was a difficult journey for my whole family, with lots of ups and downs, including a placenta previa that required multiple OB triage visits, but we proudly made it to my 38-week induction date and had an easy delivery of two beautiful babies. So much anxiety over the last year had finally come to an end as we held our twins, Ellie and Rowan, in our arms with big sister Emerson at home. We had worried about Rowan for a number of reasons throughout the pregnancy (abnormal structural ultrasound, decrease in weight, small head circumference), and although we were told he was healthy at birth, we just had a feeling that something wasn’t quite right. He had a rash all over his face and was very shaky. He ultimately failed the newborn hearing screen, which is not uncommon, and so we had a follow-up test in a month. Fortunately, the hospital we delivered at did targeted screening for congenital cytomegalovirus (CMV), so when he failed his hearing screen, he was tested. We had one week with our twins before we got the terrible call that our little boy had CMV. I will likely share more about CMV in the future, but it is ultimately the cause of his profound bilateral hearing loss, cerebral palsy, and all of his other delays due to this virus having the ability to severely impact hearing and structural development especially when acquired during the 1st and early 2nd trimester. For more information about how to prevent CMV during pregnancy see: https://www.cdc.gov/cytomegalovirus/about/index.html
Resources
We were completely blindsided and devastated. As an infectious diseases pharmacist, I knew of the large spectrum of outcomes this disease could cause, and unfortunately, Rowan had devastating results on virtually every test moving forward (brain ultrasound, hearing test, etc.). As we settled into complete despair, the governmental resources availabe assisted us within a week of his diagnosis with no prompting from us. This gave us a small glimpse of hope, as I had people and resources to help our family and Rowan move forward. Here are a list of those resources:
- First Steps: called me within a week of his diagnosis since CMV was an automatic way to be eligible. Without my hospital having screened him and diagnosed him with CMV, I likely would have had to go multiple months proving that Rowan was missing milestones to have qualified, since you have to diagnose a child with CMV within 2-3 weeks of birth. This is one of the hardest parts about the diagnosis of a child with any congenital disease. It’s a “watch and wait” approach, and many families, without an early, concrete, diagnosis, are left without resources until their child starts missing milestones. I’m so grateful we didn’t have to wait for that. First Steps is a statewide early intervention system that from birth to age 3 provides services for kids with developmental delays. This means we were able to receive free speech, physical therapy (PT), occupational therapy (OT), etc. services through them. They also helped to guide us as he aged out of the system and was able to enter preschool at 3 (https://prd.webapps.chfs.ky.gov/kyfaces/Kinship/FirstStepsProgram)
- Medicaid: Medicaid provides Rowan with all the medical care that he needs, free of charge, in combination with my primary insurance. Although my primary insurance is awesome, we would run out of the PT, OT, and speech visits that Rowan needs on a weekly basis within a month. We also frequently go to Cincinnati Children’s for some of his care, and he recently needed hip surgery, so the medical resources Rowan requires are significant. Medicaid also pays for the equipment Rowan needs like a wheelchair, stander, gait trainer, etc. Regardless of income status, the cost of a child with disabilities is significant and would put anyone into financial stress on top of the mental and physical stress families already experience. Medicaid is a lifeline for our family. Unfortunately, it is actually very difficult to qualify, especially if you are above the minimum income limit, and so I’m grateful for the people who helped us navigate the system so that our family could get the resources it needed.
- State Provided Waiver Programs: State waivers are the reason Rowan qualified for Medicaid. Despite our higher income, Rowan’s diagnosis automatically qualified us due to him being eligible for these waiver programs. Rowan is currently on the Home and Community-Based (HCB) Waiver Program as other programs, like the Michelle P Waiver and Supports for Community Living Waiver have an extensive waitlist. This waiver qualifies us for Medicaid but also allows us to use 40-48 hours a week to pay someone (traditional) or myself/mom (provider-directed) to take care of Rowan. Although Rowan started at a great daycare, we quickly realized he needed one-on-one care to take him to his appointments and give him the individual attention he needed to develop. Many families use these hours so that the mom or dad can pay themselves to provide for the child instead of working, especially since a fulltime, dependable provider can be difficult to find. In my case, I went the traditional route (only one without a waitlist at the time) and hired our amazing caregiver, Kalli, to take care of Rowan. We have been fortunate to have Kalli for 3 years now and she is truly Rowan’s person. And ours!! (Picture below) She’s watched Rowan when Reece and I have gone on vacation, she takes him to his appointments, and is an incredible Rowan advocate. We would not have survived without her. This waiver also provides a case manager who helps with navigation of the waiver and its resources.
- Special Education Through Public School: Because of the Individuals with Disabilities Education Act (IDEA), Rowan is able to receive special and related services in public schools. An Individualized Education Program (IEP) is developed for these children, and you meet to discuss the students’ needs and update this plan annually. I cried at our last one because of how well every therapist and teacher new Rowan and truly loved him. Currently, he goes to Picadome preschool, and they have just been amazing to him and to our family. He receives PT, OT, speech, and many other services while he’s there and gets the amazing benefit of interacting with other peers and getting to learn in an adapted environment. Not every elementary school offers preschool, which is why he goes to a different school from our oldest, Emerson. However, when he turns 5, and goes to kindergarten, he will be able to go to Cassidy with his big sister and twin sister, Ellie, which is just walking distance from our house due to their ability to provide a Moderate-Severe Disabilities (MSD) classroom (https://www.education.ky.gov/specialed/excep/Pages/FamParRes.aspx). I can’t imagine one of my children not being able to go to school with their siblings but this is a reality for some.
- Family and Friends: Although not one guaranteed, family and friends have been a lifeline to us. We have such great people in our lives who would do anything to help us, and I realized that firsthand after Rowan was born. I mention this one because not everyone has this resource. I cannot imagine being a single parent with a disabled child or being on the waitlist for the waiver without any additional personal support to help watch my child while having to work. I have an amazing husband/partner, we both have great jobs, we have friends and family that love us, and it’s still so hard! Life is hard for everyone but it is certainly made easier by being a support system to others, and I always try to keep in mind that sometimes people just need help.
I realize this is an extremely long update, but I hope it’s a helpful resource even if you just skimmed it. These resources allow Rowan to live with us and be an active participant in society. He may not contribute in the typical way we have come to believe, but like so many special kids, Rowan brightens the lives of other people with just a smile and reminds so many of us that it’s okay to need help, to be compassionate, and to be different. All people are a gift and should be celebrated, and I’m so grateful that Rowan and our family had these resources so soon after he was born. We were able to mourn the diagnosis, celebrate our new babies, and not worry about whether he would have what he needed as he grew.
Love you all,
Katie
Comments