Honoree Spotlight: Mark McKenzie & Autumn Ziemba - Community Leaders Award
Posted on 10/08/21 in Supporting the Mission by Milestones
Mark and Autumn are passionate, active advocates for their child and others with autism, lending their platforms and expertise as parents to increase autism acceptance in the Greater Cleveland area.
In 2017, Mark and Autumn’s son Simon received an autism and cancer diagnosis within months of one another, news that left the entire family uncertain of what the future would hold. In the midst of aggressive cancer treatments, Mark and Autumn worked to piece together an action plan to educate themselves about autism and to build a support system for their son. This effort led them to the Milestones Helpdesk, where they were introduced to a vast network of resources, recommendations, and most importantly, people who understood what they were going through.
Since Simon’s autism diagnosis, Mark and Autumn have dedicated themselves to spreading autism awareness within their community, while supporting Milestones and other families on the same journey. As an Emmy and Associated Press Award-winning journalist, Autumn uses her platform to encourage parents to become strong advocates for their children, and is an active participant in Milestones' annual events. Mark is a creative director at Brokaw, and has volunteered his comedy and improv talents many times over the years to support Milestones’ fundraising efforts. He now serves on the communications committee, assisting with the organization's advertising and content strategy.
Simon is now cancer-free and recently started kindergarten. He enjoys spending time with his 10-year-old sister Maren and wants to be a firefighter when he grows up.
It is our privilege to present Mark and Autumn with the Community Leaders Award at this year’s Annual Benefit, taking place October 14th, at Driftwood Caterers at Landerhaven (in-person tickets are now sold out - virtual tickets still available).
How did you first get involved with Milestones?
Autumn: We have a friend named Deena who first introduced us to Milestones. She raved about you guys long before Simon as formally diagnosed. She was one of the first people who reached out to us when he was diagnosed and she was so helpful in getting the ball rolling with Milestones. Within a day, Ilana was calling us. I remember being on the phone with Ilana for an hour talking about how we were feeling and listing everything we needed to get done, because we were just so overwhelmed. It was so nice to have somebody who "got it" spend time with us on the phone like that.
Mark: Deena actually asked me to perform at a benefit for Milestones, before our daughter Maren was even born. Deena and I trained at Second City, so she and I got to perform at a few Milestones functions together. Through these events, I met Ilana and she told me more about the organization, At the time, I didn't have any experience with autism but I thought the Milestones mission was great. As soon as Simon was diagnosed, it became very personal, and we started getting more involved in the Milestones community and learning about resources.
How has Simon's diagnosis changed your life?
Mark: Autism families have huge hearts. Having autism come into your life opens up your heart to what other people are going through and makes you take note of how other people might be going through life. Once you are a part of Milestones, you are a part of a network of families that understand what you are going through. So you have a companion to go along your journey.
Autumn: Simon has taught us more about life than anybody. You start to celebrate everything. Everything becomes so much more special, than if he were leading a neurotypical life. Nothing is taken for granted. When the journey is so much more difficult, you learn to appreciate those little things so much more. Even things that are just as simple as when he says, “I love you too," or the other day when I picked him up from school and he held his hand out and formally presented these two kids to me as his best friends... at one point, all we ever wanted was for him to make a friend, so to see him experience these things is incredible.
What has your experience been like using the Milestones Helpdesk?
Autumn: We've used it for a number of things. It is so great to know you can just call and someone will be there to do the research for you. Just a few years ago, we were wanting to go on vacation but we weren’t sure how to do it or where to go with a child on the spectrum. We called the Helpdesk and received a whole list of resources and autism-friendly resorts, both locally and along the coast. Milestones even put us in touch with a travel agent who is an autism mom. The staff connected us with things that we didn’t even think would be available to us.
Something as simple as just wanting fun as a family, Milestones was able to help make that happen. You are so close to our hearts.
Given your experiences getting support from Milestones for Simon, how has that inspired you to spread the word?
Autumn: When you see what a lifeline can be to you in your time of great need, you want others to have that same resource, so it has inspired us to spread the word because when you know the difficulty of that diagnosis and tremendous pressure especially in the first few months, you want to make sure other families have that same support. It becomes second nature to want to help other people on the same journey. You know how intimidating and overwhelming all of it is, and any resource that can help other families navigate those waters, of course, you want to spread the word.
Why is it important to you to give back to Milestones and your community?
Autumn: No one ever expects a diagnosis so when it happens to your family, it's tough. I think people who aren’t in the community don’t understand what the diagnosis is like. People always automatically think of a horrendous medical thing like cancer when they think of difficult diagnoses, but Simon’s diagnosis for autism was really difficult; it was traumatic because of all of the unknowns. When your child is two and loses all of his language, you ask yourself a lot of questions, like how will he live a quality life?
To have an organization that is in your backyard when you get this kind of news is invaluable. It is wonderful that there are national organizations, but to have something that is local, that is helping families and can connect you with others in your own community, that impact is huge. We want other families to understand the value of Milestones so we will do whatever we can to promote the organization.
Mark: To me, it is so important to feel connected and feel like you have a network when hard things happen. It is similar to when your child has leukemia, right? You initially think you’re alone, you feel isolated and you think no one understands. But the truth is there are a lot of people who have been through it, and not only that, they’re ready to help. As an autism parent, knowing that there are people out there who can point us in the right direction to help our child become the best version of himself is huge. We want other families to know they have somewhere to turn like we did.
What do you think is the greatest impact Milestones has made so far?
Mark: It all comes back to that community piece. The biggest impact Milestones has made is creating a community within our community. Whenever you are around different autism families, you have an idea of what they're going through. It’s a network that keeps people talking and helping one another. I can’t say enough about how important it is to have a united community. Milestones makes connections and gives us all a sense of belonging. Because of Milestone, we’ve been able to find our people. Once you are a part of the organization, you have a companion for the journey.
Autumn: You see the impact at the bowling event, the benefit - you are surrounded by other families that are in our shoes, and you see people who have been with Milestones, for years or decades, that have decided this is the organization they want to commit to. That speaks for itself. Milestones has built a tremendous community in Northeast Ohio. When you go to these events, you see the outpouring of support and that speaks to the impact.
What advice do you want to give to other families who have loved ones with autism?
Autumn: Be gentle on yourself. It is so easy as a parent to think of all the ways you are doing it wrong or think about the things you are failing to even get to. It is so easy to beat yourself up. Know you are doing the best you possibly can with the hand you’ve been dealt.
Advocate, advocate, advocate, which is hard because advocating can be exhausting and relentless, but I feel like at least for us, it has been therapeutic. Mark and I have both found a lot of reward in our own advocacy for Simon. It has allowed us to help others which is always the ultimate goal. Remember it is okay to take it one day at a time, or one hour at a time if you need to. There is so much beauty in the journey and so much to learn from your own child.
Mark: Practice courage, because there is often a lot of fear. There is so much about it that creates fear inside your heart and your mind. But know that you are going to find out so much more about your relationships. You’re going to experience so much more than some parents experience. It’s not good or bad, it’s just different. If you are courageous enough to see this as an opportunity instead of being afraid of what the future may hold, you can find some beautiful moments. For example, Simon just told me he loved me for the first time this year. It was incredibly meaningful and emotional, and that is a moment I may have taken for granted if Simon didn't have autism.
Autumn: It is also important when you first get that diagnosis to allow yourself some time to grieve, and to not feel guilty about it. You have to allow yourself to let go of the expectations you had and get in the right mental state. There may be hard stretches but not everything is going to be hard. There is going to be joy and laughter.
For more information about the 2021 Annual Benefit, please click here. All contributions to this event support the Milestones free autism Helpdesk, a service that connects individuals and families to the trusted resources they need.