My brother, Max

My brother, Max

by May Parell

May, tell us a bit about you and your family

My parents have been married for 32 years, I'm 29 and my brother Max is 27 and has Down Syndrome. He lives with my parents in Ohio and I come to visit him frequently since moving to Chicago. We are very involved in each other's lives and have always remained close. My parents have always done everything they can to make sure Max and I experienced new things, working hard, and living a fulfilled life.

Tell us what it was like growing up with a brother with special needs through the lens of caregiving starting with the joys

It's funny to think about how the norm for me growing up is so different from many people. You see someone with Down syndrome and think about being compassionate and gentle. Max and I would play, wrestle, fight, and bicker just as any other siblings do.

Watching my brother succeed is an unmatched feeling. This is with Special Olympics (skiing, track, swimming, basketball, etc.), seeing him make friends and fit in, getting a new job, or showing off a new skill. One specific memory that comes to mind is when Max got to dress up in full uniform for the senior night football game. He ran out on the field through the fog machines with the team captains who were also his two best friends and there aren't many other occasions where I've felt that pride and confidence radiating from him.

Max was so lucky to have classmates who included him and accepted him the way he was. I know it doesn't always go this way and I am beyond grateful that he was able to spend his days growing up and going to school feeling like he was living life just like everyone else.

Tell us some of the challenges for your family and brother

I'm not going to sugarcoat the challenges because this is a side of my experience (and so many others) that no one sees or hears about. If you go to Reddit or Facebook, you'll find threads and groups of parents, siblings, aunts, uncles, grandparents & friends all asking for help and advice on what to do for extremely specific situations regarding their loved one with special needs. These are situations that the majority of people will never have to think about.

My parents have done a phenomenal job at searching our hometown and nearby towns for places that will accommodate Max to work there for a few hours a week. He works at a sandwich shop, an outlet store, and another restaurant and has worked at water parks, theme parks, bowling alleys & more in the past. He requires extra instruction and doesn't understand certain concepts as well as people without certain special needs. I understand that in ways this can feel like a burden to a business, but it's so important to us that Max has some sort of structure and responsibility he feels in his everyday life.

The challenge of grief

Another challenge is explaining grief. My brother lost his last grandparent and his very best friend in the same year. I naively thought that maybe he would mourn and continue to live his life as he is sometimes not as in tune with his emotions as you or I would be. I was very wrong.

It has been over a year now and Max talks about his 'lost brother' daily. There will be nights when we find him sobbing and angry about losing his 'brother'. We feel helpless trying to explain how we wish we never lost him either, but that death happens in life and we have to lean on each other to get through it. He doesn't understand why he passed, or that he cannot come back and it's heartbreaking to know that he deals with these thoughts internally and cannot necessarily process them or talk through them the same way we do with grief.

The challenge of awareness

The piece that I find most challenging is that Max tells us he wishes he did not have Down syndrome. This might be controversial for some, and trust me it's difficult for myself and my parents to know how to respond to that statement.

Max grew up going to school in both regular and special education classes. He went to parties with friends and was always in the student section at every sporting event. Now that he is 27, social activities are tougher to find. We are so fortunate to have local companies like Life Out Loud, Cassel Care, and Erie County Board of Developmental Disabilities with a few more to come up with jobs, trips, experiences, and fun events for all people will special needs to attend. These people pour their entire being into making sure they are creating fulfilling experiences for those who want to feel social connection and inclusion.

I believe that Max thinks of his best days immersed in a world where he didn't feel like he had Down syndrome because no one treated him that way and in a way he was blind to his own disability.

He now recognizes that he has a disability and is aware enough to vocalize that he doesn't want to have it. We try to explain how we cannot change him and remind him of all the reasons to be proud of himself, but it doesn't quite register. We know he is not trying to be rude when he says this, but it's been very difficult to get him to understand.

Now - these are heavy topics, but I need everyone reading this to know that while we have our struggles, there are endless happy moments in living life with Max. We are so proud of who he has become, how independent he likes to be, and frankly how hilarious he is.

Tell us what is on your mind knowing you will one day be the primary caregiver for your brother and how you are preparing yourself now

This is a topic I could write about for days. This is what keeps me up at night. One thing I know is that I'll do anything to keep my brother happy and create a fulfilling life for him, surrounding him with people who care about him. If he decides he wants to live in a group home - that's what we're doing. If he decides he wants to live with me when I start a family of my own - that's what we're doing. I know there are tough times ahead and I anticipate the dynamic of my life and household to change as Max ages.

The main thing I am doing to prepare myself is having conversations with my parents. He has been in their care his entire life so they know what his triggers are, and what makes him happiest, along with all his other quirks and behaviors that may not always make sense. 

Tell us what you intend to build to help support people in a similar position

I'm currently creating an application that will be launching in 2024. It’s going to be a revolutionary platform dedicated to connecting caregivers of individuals with special needs in a supportive and inclusive community. The purpose is to bridge the gap between caregivers, allowing them to connect, share experiences, and provide much-needed emotional support to one another to reduce the isolation often experienced in their role.

For the last few years, I've been wondering who I'll be able to go to for advice when Max is in my care and the only people who will have the answers will be others who have experienced it. This project selfishly came from a place of wanting help for my future self, but now will be available to all and can hopefully help hundreds of thousands in the future who are in the same position as me.

This App is called 'Special Together' and will be free to download/use.

About May

I started off hating most things I now love. When I was young I tried softball - I hated it but it showed me how to be part of a team. As a teenager I tried sail camp - I hated it but it taught me how to get over certain fears. In college I hated working - but I knew I needed a job to support my spending habits. I hated working out - but as I did it more I realized it's one of my favorite escapes. I hated interviewing - but I was able to make a game out of it because I knew it was going to be a part of life (at least until I retire).

I didn't like the idea of anything new, but now I look back and see that everything that's given me joy, taught me lessons, and taken me to new heights comes from trying something new. I moved to a new city in my early 20s, which is how I ended up in sales. I live in Chicago with my dog, work as a sales leader at a job I love, and travel often to see my family back home. I enjoy bike rides, cheeseburgers, gift-giving, and drinking iced coffee year-round. Meeting new people and finding unexpected connections through them brings me joy. All of my inboxes are open, let's chat.

🤝 To connect with May, find her on LinkedIn and be sure to stay tuned for the launch of Special Together and on Instagram. May is always on the lookout for collaborators and supporters of her mission