In the Loop

News and views from across Mayo Clinic

February 15, 2022

Mayo Clinic Employee Experiences: On raising children who are living with disabilities

By In the Loop

Mayo Clinic is a unique place: the culture, the values, the people. "Mayo Clinic Employee Experiences" explores the experiences of Mayo Clinic staff as they navigate life personally and professionally. Sharing these experiences increases understanding of others and ultimately contributes to finding connections, belonging and inclusion at work.

In this episode of "Mayo Clinic Employee Experiences," Alexandra Morrissey, a nurse in the Nursing Neonatal ICU, and Matthew Rank, M.D., chair of the Division of Allergic Diseases, discuss their experiences parenting children who are living with disabilities. Morrissey talks about her daughter with Down syndrome and what that means for her family. Dr. Rank shares his parenting experience raising a child with cerebral palsy and another child with autism and epilepsy.

Listen as they discuss the joys and challenges of being parents to children living with disabilities:

Read the transcript, edited for length and clarity:

DR. RANK: As a parent, you feel a little bit different because your kids have different needs that other people may or may not understand.

NARRATOR: In this episode, you'll hear Alexandra, an ICU neonatal nurse, and Matt, an Allergy and Immunology physician, discuss their experiences raising children who are living with disabilities.

MORRISSEY: I'm married to my husband, Kevin. We've been married for 22 years. We have five children. William is 19. We have a son, David, who passed away 17 years ago. We have our daughter Samantha, who's 16, and she's living with Down syndrome. We have a daughter Olivia, who's 15, and a son Thomas, who's 13.

DR. RANK: I've been married to my wife, Beth, for 20 years now, and we have four children. Our four came by two. We have Alex, who identifies as nonbinary gender who is 17 1/2 and is living with cerebral palsy and her twin sister, Eloise. Then we have Vincent who's 13, and his twin sister, Julianne, who are living with autism and epilepsy. What have been some of the challenges that you've experienced as a parent when raising a child who's living with a disability?

MORRISSEY: First of all, raising children in general, as you know, is challenging. But with raising a child living with a disability, at least in my family, my children will tell me that I don't keep it fair. They point it out every time if they sense that the chores are uneven, or they sense that I don't have the same expectations of her that I do of them. The challenge is supporting them the way they need to be supported, and allowing them to support each other and challenge each other. How about you?

DR. RANK: Similar type of experience with trying to set expectations and be fair. You know that the currency of parenting is attention and giving each of the children the attention they deserve, the love they deserve.

Sometimes when you have children who are living with this disability, they need more attention from time to time. Sometimes, they get less for other reasons, and so, trying to be attentive to that.

We may not expect our 13-year-old to spend two hours on her homework, but we certainly expect her twin brother to when he has the homework. The physical tasks around our house, including helping with the groceries, etc., we certainly don't expect those things to be performed by our child who has cerebral palsy and uses a wheelchair. Those differences have to be considered.

We want each of our children to grow and to improve, and reach their full potential and be happy and all those things. So as a parent, we're kind of guiding the ship a little bit to make sure we show enough attention, love to each one and try to be as fair as possible.

MORISSEY: Our daughter frequently needs more time and more energy. The others notice that, and there is jealousy and resentment. How do you smooth that out to maintain that good relationship between those kids so they can develop a healthy relationship?

We have different people who work with Sammy. It's such a relief sometimes. It's terrible to admit that when they have her, I can just take a minute to breathe and maybe focus on the other kids. Maybe go to a basketball game without worrying about where the bathroom is and how are we going to get there? Are we going to get there in time?

In our family, there's no, "Hey guys, let's just go to the park." I don't think many people realize that for our daughter, she just takes more time, and that it is a problem to find that balance.

DR. RANK: The whole just picking up and going to do something is something that that we feel maybe other families are able to do more easily than we are. We're not quite as flexible. And we need to be more flexible because if you go somewhere, there might be some problems. You want your child to be comfortable and to have a good time, and sometimes they need certain things to be set up for that to happen.

Our younger daughter doesn't like changes in scenery, so we need to be pretty gradual. Other parents may not quite understand why we decline invitations to do things or why we leave early, or why it's more comfortable to stay in our own home where we have all of our stuff.

The other challenge is sometimes you just feel sad about some of the things that your child may not be able to do because of their disability — whether it's take a vacation, go to grandma's and have a great time, and be able to sleep. But flipping it to the other side a little bit, some of the joys and happy parts ― when you're able to meet those challenges or overcome those challenges ― are really neat things. The whole family can really appreciate that.

Our family has become a closer family. All of our children have come to appreciate some of the little things in life a little bit more.

MORRISSEY: I think our kids are more flexible because of that. They're more willing to change plans. They're more willing to do things differently or look at ways to do things differently.

It's interesting that you were talking about being sad about the things they can't do. Our daughter Sammy is watching her younger sister learn how to drive. She is determined that she is going to drive, and I think she could do it. The hurdle is that she can't read beyond the kindergarten level. That's just her reality.

Reading is a huge part of what we do. She really wants to read chapter books, but she just can't follow the story. She wants to do it herself because she looks around and she sees everybody else reading books.

My heart just breaks when I see her sitting and looking at a book, and she doesn't turn the pages. You just can see the frustration on her face and the disappointment. It's so hard knowing that there really isn't anything I can do about that.

So as far as driving, I think she could do it. She can navigate around town. She knows what the signs mean. The hurdle would be taking the written test. It's hard to see them recognize the things they can't do.

DR. RANK: Most parents probably worry a fair amount about their children's future. Are they going to develop into happy, healthy, productive, satisfied people when they're older?

When you have children living with a disability and you're a parent who's providing a lot of assistance to them, this means some different financial planning. This means some different sort of life planning. Who's going to advocate for them? We don't want the siblings necessarily to feel like they must have a responsibility to be the people who step in.

Those things are there for all parents. I think they're just a little bit different when you have a child with a disability who you think has a lesser chance of being fully independent when they're an adult.

I want to turn to one other topic, which is working with a whole bunch of people who help us out. There are all kinds of different support systems out there.

It's confusing. It's often difficult to find the resources. This is where networking with other parents who have children with disabilities can make a big difference.

There are some pitfalls to navigating this, too, because you're going to find that there are huge differences. There may be a child who has the same diagnosis as your child who has a very mild version of that diagnosis or has a very severe version of that diagnosis.

Those families may have very different needs. They may have different resources. Sometimes that can lead to people feeling insufficient as a parent.

Figuring out how to work with people who want to help your child but may not be helping your child the way you think they could. Sometimes there are going to be challenges with schools and interfaces with other activities.

MORRISSEY: It can be oddly competitive. It is very difficult to figure out what support you need and what fits with your family. Sometimes I just want to say: "Forget it. I don't want anybody else in my house right now." I don't want to have to worry if my kitchen is clean because at 4 o'clock today, so-and-so is coming to help my daughter with reading. But there's that beautiful part of it, too — people we've met and have become part of our family or really good friends that we never would have met otherwise.

I think the main thing about the schools is that if your child is struggling and not getting the support they need, it's really important to just ask. I was fortunate because I could be at the school frequently. I was able to provide support and kind of model what she needed.

When she graduated from eighth grade, there were tears because everybody loves Sammy. She was such a huge part of that school. All of her classmates and every teacher is better because of having to rise to the occasion of learning to navigate education with a person who learns differently.

DR. RANK: I like to think about it as advocacy. That's how my oldest child with cerebral palsy would think of it, too. In fact, one of our very proud moments was when our 17-year-old was recognized with an award for self-advocacy by an organization that they're involved in within the community.

It's been really neat for us to get to follow that and watch them develop those advocacy type skills. Trying to effectively communicate how these differences can be strengths and how their contribution matters. That's been a huge joy for my wife and I, and their siblings.

Part of their lifelong work will be advocacy, mental health, social work, those type of interests, and they will be hopefully part of a really meaningful difference in the world.

MORRISSEY: We talk a lot with Sammy about using her voice. Especially in the last few years, she's become more understandable with her speech, for example, at doctor's appointments. It's her job to check in and give her birth date.

When people don't understand her, she needs to speak more clearly. We've been pushing her toward more self-advocacy, and it's really fun to watch.

She used to hide behind us, and now she has resigned herself to the fact that we're not going to speak for her anymore.

Sometimes I underestimate her abilities because I, too, see her sometimes as a person with Down syndrome instead of Sammy. I see the challenges, sometimes, more than I see the strengths. I'll get upset with other people who discount her abilities, but I need to be more self-aware. These little moments happen, and you're like, wow, she's got it. She can do it. It's amazing.

DR. RANK: The underestimating thing is a touchy point in our family. When you have a child who's in a wheelchair, there are automatic assumptions made about their cognition. So many times, in public, a stranger may approach our family and want to ask questions of our child with cerebral palsy, but then turns to the adult who speaks to them and doesn't speak directly to our child. How often have we redirected them and said, "Well, why don't you ask them?"

There's this underlying assumption that maybe they can't speak, maybe they won't understand. We have felt that quite a bit, unfortunately, over the years in schools.

 The expectation for our child who's in a wheelchair is that they're just happy to be there, much less there to get an education. That's where, as parents, we've really needed to be firm and say: "These are their goals. This is their academic performance to date. Please don't discount them."

MORRISSEY: When Samantha walks into a room, everybody sees that she has Down syndrome. There are automatic assumptions made.

The one thing that I've learned from my daughter is the assumptions that I make, she blows right through those. We were told that she wouldn't do certain things. I feel joy when my underestimations are completely wrong because she's capable of doing it. It might take her a little longer.

My one hope for her is that people won't underestimate her just based on her appearance. That people will give her the opportunities. With the right teaching, with the right support, she can really do anything. She's a huge asset to our family.

NARRATOR: How can you better support your colleagues, friends and family? Comment below or discuss with a colleague.


Tags: Mayo Clinic Employee Experiences, Staff Stories, Working at Mayo Clinic

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