Heather has two children and lives in Willoughby.

What do you do to relax?

Go shopping for flowers and then hope they survive until I can plant them in the ground.

What else would you like to tell us about yourself?

I am a neurology nurse which gives me a unique perspective as I guide my children on their paths.

What benefits has Connecting for Kids brought to you and your family?

It has shown me that there is support in the local community and strides are being made, which provides hope.

Which have been your favorite Connecting for Kids resources?

The website but I am excited to figure out how to be more involved. I feel that being in Willoughby can be an obstacle to connecting with resources and the openness and continued reach out of this organization makes it feel accessible.

My greatest lesson learned was...

The greatest lesson I have learned so far is that my son is far more capable than I ever imagined, and that the world around us is often much kinder than I expected.

When you receive a diagnosis, it can be easy to focus on the challenges ahead and the things your child may struggle with. I spent a lot of time wondering what his future would look like and worrying about the things he might not be able to do. But time and time again, my son has shown me that he has his own way of learning, communicating, connecting and experiencing the world.

He has taught me not to underestimate him. His progress may not always follow the timeline others expect, but every achievement, every new skill and every moment of connection is a reminder that capability looks different for every person.

Along this journey, I have also learned that people are often more compassionate and accepting than I imagined. From strangers offering patience and kindness to friends, family and community members taking the time to understand him, we have experienced so much generosity. Those moments have reminded me that inclusion grows when people choose curiosity, empathy, and acceptance.

My son has changed the way I see the world. He has taught me to look beyond assumptions, celebrate progress in all forms and believe in possibilities that I may not have seen before.

What I worry about most…

When people ask what I worry about the most, the answer is complicated. It isn’t one single thing — it is the collection of all the unknowns that come with loving a child who experiences the world differently.

I worry about his present and his future. I worry that his world might become too small because the things that bring comfort and predictability can also make it harder to step into new experiences. I want him to have friendships, adventures, moments that bring him joy and opportunities that make him curious about the world around him.

I worry about helping him learn kindness, patience, and consideration as his emotions and strength continue to grow. I worry about how he will navigate a world that does not always understand him and what support he will need as an adult. I worry about his health, because every day I am reminded that he does not always have the words to tell us when something is wrong.

And I worry about the impact his needs may have on those who love him, especially his brother.

But beneath every worry is the same hope: that he is surrounded by people who see his worth, believe in his abilities and help him build a life filled with connection, purpose, and joy.

The most difficult part of parenting a child who struggles...

When people ask me what the hardest part of parenting a child who struggles is, the honest answer is not something simple like “sleep deprivation” or “tantrums.” It is something much harder to explain. It is the feeling that you are constantly fighting for your child’s right to be understood, supported and included.

There is a trend going around social media that goes something like: “When people ask me what my biggest fear is, I say sharks because the real answer would be too much.” I think many caregivers understand that feeling. The real fears are not always easy to say out loud.

The hardest part is moving through a world that does not always understand our children. It is watching your child work so hard to navigate a society that was not always designed with them in mind. It is knowing that laws and systems are supposed to remove barriers, protect vulnerable people and provide support — yet many families are feeling uncertainty and fear about whether those protections will continue to exist.

It is painful to feel like caregivers are sometimes viewed as obstacles instead of partners or that children who need extra support are seen as burdens rather than people with value, potential and a place in our communities.

These concerns are not political talking points or exaggerations. For many families, they are daily realities. They are the conversations happening at kitchen tables, in therapy offices, at doctor appointments and in support groups across the country.

The hardest part is not my child. My child is amazing. The hardest part is wondering whether the world will meet him with the same compassion, patience and belief that I see in him every day.

All I want is what every parent wants: for my child to be safe, valued, supported and given the opportunity to live a meaningful life surrounded by people who see his worth

Is there anything else about your journey that you would like to share with other parents?

Navigating Cleveland Clinic Children’s Main Campus with a Child Who Has Special Needs

One thing I wish I had known sooner is how Cleveland Clinic Children’s Main Campus is organized to support children with special needs. Unfortunately, this was something I had to learn along the way, so I wanted to share what I have learned to hopefully save another family time, stress and frustration.

A few helpful things to know:

Radiology is located in the basement of the R Building (Pediatric building)

Pharmacy and lab collection are located on the first floor.

The second floor has a children’s play area with child watch options, which can be incredibly helpful when siblings do not need to be present during appointments. This space includes free games, snacks, drinks, coloring activities and a separate sensory room — a great place to decompress after an appointment or help with transitions.

You can also request a Child Life Specialist. Please ask for one, because it is not always automatically offered. Child Life Specialists can help children prepare for and transition through stressful medical experiences, such as lab draws, procedures requiring anesthesia or other anxiety-provoking situations.

A few parking tips:

Valet parking is available, but vehicle retrieval can sometimes take longer than expected. If you use valet, consider heading up to the second-floor play area while you wait — there are windows where you can watch for your vehicle.

Many families do not realize they can also park in the Mellen Center parking lot, located kitty-corner from the Children’s building. It is not free, but I personally find it easier to navigate than the main patient parking garage.

I hope these small tips make navigating Cleveland Clinic Children’s a little easier for families who are already carrying a lot.