How KLAS Supports Caregivers of Children with Disabilities - Cover

How KLAS Supports Caregivers of Children with Disabilities

Every parent yearns for a supportive community, and parents who have children with special needs need it more than most. There aren’t many road maps for navigating a life full of altered expectations, doctor’s appointments, and medical bills. Much of the information for parenting doesn’t account for disabilities, and there are so many challenges that seem remote to people who aren’t in the situation themselves.

I know this firsthand because I have three children with a degenerative neurological disease, Metachromatic Leukodystrophy (MLD). My childrens’ disease didn’t manifest until they were teenagers, and it is extremely rare. It took us years to get a diagnosis. My three kids with MLD all got bone marrow transplants at Primary Children’s Hospital in Salt Lake City in 2013. That experience and the treatment that we received there was what inspired me to work at KLAS so that I could be a part of a team that works to improve healthcare for everyone.

The Parents of Children with Disabilities ERG 

Last year, I was invited to be a part of a special group at KLAS for caregivers of children with disabilities. This group is one of KLAS’ many Employee Resource Groups (ERGs), safe spaces where minorities or people with special struggles can support each other, learn, and grow together.

I reluctantly went to the first meeting, wondering whether I was going to cry while we all heard each other’s struggles. That wasn’t the case though; it was helpful to see what my teammates were experiencing in their own lives, and we were able to discuss and brainstorm about a lot of issues that I wouldn’t ordinarily talk about at work.

This ERG was formed because of interest from KLAS teammates. Though I didn’t participate in organizing the group, I volunteered to lead it when the founder of the group left KLAS.   Attending the meetings helped me relate to people with whom I might not ordinarily come in contact. (And who doesn’t love cross-team get-togethers?) Caregivers working through vastly different family challenges and issues still feel like they “get it” and build a sense of community.

Why We Need to Feel a Sense of Belonging at Work

At first, I wondered why it was important to feel a sense of understanding and belonging at work. I usually share my experiences with my family and friends, and it felt odd to be open about my personal life at work.

Early this year, I moved into KLAS’ HR department for my new role as the manager of KLAS Education. Being on the HR team opened my eyes to why it is important to feel intrapersonal connections at work. Read this article to learn more about it.

Before I had ever heard of the concept of understanding and belonging at work though, I could have told you that it made a difference for me. I value these relationships and connections and have learned so much from my peers at work that has made a difference in my life.

One of the hardest things about being a caregiver of a person with a disability is how isolating the experience can be. You just don’t see many people struggling with the same issues that you do, and there can be feelings of embarrassment, weariness, and loss which just make everything harder. It can be awkward to talk about your particular struggles with people that don’t have similar experiences, so people tend to keep their issues to themselves. Conversely, the joy and celebrations that come with family members in special circumstances can seem unrelatable to “normal” families.

How Our Group Works

Over the last year, the Parents of Children with Disabilities group has evolved from being open to parents of children with disabilities to welcoming any person who is a caregiver of someone with a disability. These disabilities cover a wide range; they may be physical, neurological, mental, or emotional.

There have even been a few people who have come to our meetings who don’t have children with disabilities but who want to understand how they can better support those who do. That really speaks to the quality of the people we have at KLAS.

During the meetings, we come ready to discuss a certain topic that we share ahead of time, but we let the conversation lead us. Our members have lots of experiences and questions that we bring to the group. It is so interesting to hear the perspectives of others who deal with both similar and vastly different challenges related to caring for someone with a disability. It is strengthening to see how other teammates face their situations, and it has been inspirational to have their support and advice when facing my own caregiving conundrums.

Our mission statement clearly encapsulates our goals as a group:

The Parents of Children with Disabilities group is for parents and other members of families with children that have disabilities of any kind. Members of that group can come together to have a support system where they can share resources and discuss the unique challenges and successes that come from raising children with disabilities.

One common theme that we often discuss in the group is how to help our children navigate life, particularly in a social setting. How do I help my child interact with others? How do I help them with school? How can I help them get a job? When you have a child with special needs, helping them grow is a whole new ball game, and it is amazing to troubleshoot issues and exchange resources with people going through the same thing.

Other Ways that KLAS Supports Parents and Caregivers

Even before the Parents of Children with Disabilities ERG was formed, KLAS had the reputation of a company that supported the work-life balance, especially for working parents. That included parents of children with special needs.

For example, there are times when I may need more flexibility in my work schedule so that I can take my child to a doctor’s appointment. I don’t have to cover things up with my manager; I can tell them what is really going on. Even if I run out of PTO, I know that the company will be supportive of me in cases where there are family emergencies.

Recently, KLAS added bereavement time as a benefit for full-time employees, and that has been very comforting for me and likely other parents in the group, knowing that there is a good chance that we will need that flexibility and understanding in a horrible situation.

A Culture of Service

I spent three months in the hospital with my children while they were getting their transplants, and the worry and stress were so heavy. That dark time while I lived at the hospital was brightened by the small acts of service that community members performed. The other parents in residence and I received tea, snacks, and little gifts to brighten our days.

One of the first things I was able to do as leader of the Parents of Children with Disabilities ERG was to help organize a service project for parents with children at Primary Children’s Hospital. At KLAS, we do several service projects per year in our community. This year, KLAS ERGs sponsored the projects, and our group organized the creation of care and toiletry kits for parents who stay at the hospital with their kids who are sick or receiving treatment. The kits included items like phone chargers, warm socks, blankets, books, and activities to help parents feel some peace and calm. I appreciate working for a company that knows the value of supporting their teammates and the charitable work that means so much to them.

The Parents of Children with Disabilities ERG is open to anyone at KLAS who would like to add their voice to the group and get the support they need. If you are a long-time employee of KLAS, a new hire, or a potential KLAS employee who wants to attend our next group meeting or learn more about the group, please let us know.