Being a special needs parent can be overwhelming and frustrating. It’s not that we don’t love our kids, but it’s hard to be a caregiver, parent, and for many of us, the primary educator and therapist day in and day out. Sometimes we get angry, and yell, or cry and it’s easy to feel guilty; to wonder if our kids know how much we love them, and how happy we are to care for and raise them, when we’re so often burnt out and exhausted. What can we can do as special needs parents to help our children become happy adults?
To find some answers, I reached out to my friend, Catholic author Emily DeArdo to share what she feels her parents did right in raising her as a child with epilepsy and Cystic Fibrosis (CF). DeArdo experienced seizures as a child until the age of five, and was diagnosed with CF at eleven. She underwent a double lung transplant at the age of 23 and also lives with partial deafness and Type 1 diabetes. Today she is a blogger, contributor to Take Up and Read and author of Living Memento Mori: My Journey Through the Stations of the Cross. She shares her unique perspective below.
What do you feel your parents did right in raising you?
Just about everything. They let me be the person that I am. They didn’t raise me to be afraid or fearful or that I had some sort of golden ticket that gave me Special Status to everyone else. They didn’t baby me. They gave me the belief that I could do things. I finished high school, I went to college, I got a job, I moved out. Now, I live close to them. I couldn’t live far away from my family because I need other people to help me with things like surgery and if I ever needed another transplant I’d have to have family support with me. But that’s my decision. I live close to them because I want to.
How did your parents talk to you about your health and diagnosis? How much did they share and at what ages?
I actually don’t ever remember them telling me a whole lot about my seizures [epilepsy]. The last one I had, I was five (I was monitored until I was 9 and that’s when we got the normal EEG results), so I don’t remember having them. I do remember the blood draws and mom calling my pill a “peppy” because it sort of smelled like peppermint. I remember them giving it to me at breakfast (as in putting it by my plate and making sure I took it). I think if it had been more of an issue when I was older, they would’ve had to explain more.
Since I was 11 when I was diagnosed [with CF], they didn’t have to explain much to me. Our education came at the same time and from the same places–in the hospital after my diagnosis (I spent two weeks in the hospital then). We were all on the same page. They knew more than I did, or at least they thought they did. I knew about the early death prognosis because I’d read about it in the encyclopedia at home, but they didn’t focus on the end game around me. It was mostly the day to day stuff. I was already used to taking pills so that wasn’t hard. And since they had to give me my treatments, I didn’t have to do them myself. Back then physiotherapy involved someone pounding on your chest in various places. Now there are devices that allow you to do it independently.
How did your family’s faith influence your beliefs about yourself? Were your parents able to explain the faith to you in a way that made sense given your diagnosis?
I didn’t feel like I was a “mistake.” I went to Catholic school, so I had that instruction as well as family instruction. We loved the rosary and often prayed it together as a family and my mom sang and played flute in the church choir.
I’m really glad I was raised Catholic because there’s just the sense that God made me this way and it’s fine. When I went to public high school, my classmates were 95% Protestant so I got a lot of “Well, if you prayed harder…” or, “Oh, what did you do to deserve this?”. That was never a “thing” among the Catholics that I knew. So that took me aback, but it also drove me to learn more about my faith!
My parents kept spiritual books in the house (the CCC, the bible, saints’ stories, etc.) so I could read those, and of course as I got older I was drawn to read more just on my own.
Were you open with your parents about any difficulties you felt about yourself, your diagnosis, or your faith?
For the most part, yes; mostly because they were going through it with me, so they understood a lot. They don’t understand everything, and that’s why I have a therapist who specializes in CF and other chronic illnesses! But 98% of the time, they understand how I’m feeling and they let me talk about it if I need to.
How did their care for you differ from their care of your siblings, practically speaking?
One of the best things my parents did was not setting different expectations for me. They did not allow me to slack off on homework or other things, and they expected me to do what everyone else did, in terms of behavior, going to school, etc. They expected me to do well. There were no “Ohhhh, I have CF, I can’t do homework” things. It was, you will do your schoolwork. You will study. You will do what everyone else does, and that paid off hugely for me in my later life, because I didn’t fall into the pity party trap. They didn’t expect me to get straight As or anything, but they did expect me to do well, because they knew I could. And later on, that enabled me to do things like make up a full college course load while taking two new classes after I spent a semester in an ICU, because I knew I had to make up the work. They didn’t push me about it, because they knew I’d do it.
They let me do pretty much anything I wanted, in terms of activities and doing things like going to the pool with my friends, or sleepovers. I just did my treatments before I left.
How did the way they treat you differ from the way other adults in your family, or close adult friends treat you?
This is actually where it’s sort of funny. Since I’ve moved out, and they don’t live with me day to day anymore, their expectations of what I can do are still based on when we did live under the same roof. Back when I lived with them, my hearing was better. I didn’t have diabetes. So now I have to teach them things like I do my friends!
My parents and my friends treat me like a normal person, which I appreciate, and my good friends know what sort of accommodations I need, like where to sit in restaurants so I can hear the best, etc.
It can be a problem with extended family, especially about the hearing. A lot of them don’t realize how bad it is, and so they won’t talk to me, which makes me sad. I do try to explain it when I can. I don’t think they don’t talk to me on purpose, but I think it’s a hindrance.
Do you parents have any regrets about decisions they made regarding your care or how they approached your diagnosis?
Not really. Sometimes I think we went a little too far in the let’s be normal sweepstakes. The one thing I think we all regret is that I had a summer job the summer after I had almost died! I spent a month in the hospital that fall (two weeks in the ICU in a medically induced coma). That spring I spent making up my coursework, and that summer I got a job. I’m not sure what we were thinking! I definitely wouldn’t do that again! There’s trying to be normal and then there’s trying to be super normal, and I think we all tried a little too hard there!
What questions would you like to ask disabled adults or their parents? Share in the comments below. To learn more about DeArdo, her book and other projects you can visit her website emilymdeardo.com. Updated to add: Emily DeArdo passed away on December 31, 2023. You can view her talk for our 2019 conference here, and click the ‘DeArdo’ tag to view her posts. She is greatly missed.