I’m so excited and honored to be featured on your blog, Miggy. I loved the spotlight on Lily, the little girl with Osteogenesis Imperfecta, and thought it might be fun to share a bit with readers about what it’s like to be an adult (or in our case TWO adults) with OI. My husband and I have OI and we have a 3-year-old daughter, Hannah, who is typical. We’re in the process of adopting a 6-year-old from China who has achondroplasia (the most common form of dwarfism). When not filling out adoption paperwork, we’re shuffling Hannah to school, swimming, or gymnastics. I’m a professor and Advocacy Coordinator for UC UCEDD and Adam is a recreational therapist. He directs sports programs for kids and adults with disabilities. Thanks again for offering us the opportunity to tell our story. We hope you and your readers enjoy it!
Miggy: Kara, thank you so much for participating in today's spotlight. You have a different perspective as you and your husband have special needs in the form of Osteogenesis Imperfecta, and while you have a biological daughter who is typical, you are about to adopt a son from China who was born with dwarfism. Amazing! First, lets talk about you and your husband--growing up, how was your day-to-day life affected by your condition?
Kara: Adam and my day-to-day life was affected somewhat differently by OI. We were both small for our ages by the time we started school and we both had multiple surgeries and fractures. Adam walked with braces until around 5th grade when he had a pretty intense bike wreck that ended those walking days. At that point though, he was already using his wheelchair on many days to keep up with peers. Even though I’d used a wheelchair primarily since kindergarten, I still don’t have his skills!
The most obvious and intrusive way that OI affects your life is with the interruption of fractures. I fractured on the way to my first trip to Disney World. Our families tried their best to carry on with whatever plans had been made prior to the fracture. I made it to Disney World and there are some pretty hysterical pictures of Adam at various events in body casts! The less obvious way that OI impacted us was a strengthening of our resolve and I believe, character. We’ve had some harsh lessons in the pain of prejudice and ignorance but have emerged into confident, happy adults that are willing to go after what we want in life--even if it’s by finding and blazing our own path.
Miggy: Since I'm usually writing from a parents perspective of having a child with special needs, I'd like to ask about your childhood view of being different yourself. What was the most difficult aspect of having OI? Were you teased or did you have a more difficult road emotionally/mentally than other kids? Were there any positive things from being different?
Kara: It’s easiest to say what parts were NOT the most difficult. For me, it wasn’t the fractures, surgery, or pain. It was being little or using a wheelchair. It was the closed-mindedness of people that blatantly choose to stand in your way. Education can go a long way to reversing prejudice and motivating people to be more aware of their biases, but it’s the moments that you can’t blame sheer ignorance for someone’s refusal to accept you-THOSE have always been the hardest. I was not teased very often. Of course, I remember a few hurtful comments but I was fortunate to have excellent friends. It’s funny how kids’ perceive their world and what is tough. While the rest of the world assumed OI was my greatest challenge emotionally, I was more like many other children in that I found my parents’ divorce far more influential and difficult for me-at that time in my life.
There were definitely many positive things about being different. I love attending OI conferences and gatherings. I also made the very early connection between social justice movements and my own fight for equality and acceptance as a kid with a disability. I was a bit of an odd kid--I loved reading about things like the Holocaust, orphans, and civil rights. Looking back, maybe there was a reason that I focused on these areas!
Miggy: How did you and your husband meet? Was there a bond there due to your shared OI experiences? :)
Kara: We knew each other as children from OI conferences. I think we first met when we were 9 or 10 but he found my brother far more amusing at that time. I definitely remember him at that time because I thought he was (and is!) so confident and he said exactly what he thought (for better or worse!). We met up again in college and started dating. At that time, our views on disability were pretty different. We were both in the process of developing pride around our identities as people with disabilities. I’ve always done more formal advocacy work and Adam now works in the field as a recreational therapist for people with disabilities. While there wasn’t necessarily an immediate bond because of our OI, it’s now something I cherish. If I’m having pain or irritated that the 5th person today has asked me, “What happened?” or an equally crazy question, I know he truly gets it.
Miggy: OK, so you and your husband meet, date, marry and decide to have a child... I'm so curious how pregnancy was for you? Pregnancy can be hard on healthy bodies--were there extra worries and concerns because of OI? And were there concerns that your daughter might have OI as well?
Kara: People sometimes assume that dating another person with a disability is somehow easier. In many ways, it makes life a tad more complex. Try loading 2 wheelchairs (2 people and 2 dogs) in a Mini Cooper… prior to our daughter, we did it! There are also double the stares (triple that with our daughter). We always knew that we wanted a family. I’d received some great consultation from a doctor at the OI conferences and she predicted my pregnancy almost exactly. The baby adjusts to the mom’s body so Hannah grew almost straight OUT. I was followed closely by a high-risk team but overall, I enjoyed a happy and healthy pregnancy. I loved feeling her grow. It was something that I never thought I’d be able to experience and I didn’t take a single moment for granted. I feel like Hannah gave me an incredible gift in the opportunity to carry her and now have her in our lives. I hope one day she can have this same amazing feeling. Since both of us have OI, Hannah had a 75% chance of also having OI (25% my type, 25% Adam’s type, and 25% double dominant-which has the worst outcome and would not likely result in birth). We were only concerned about the possibility of double dominance because we knew we could raise a child with OI. Our parents had NO notice and we’ve had 30+ years of experience. We love Hannah exactly the way she is. We don’t celebrate that she doesn’t have OI just as we wouldn’t mourn it if she did. I like the twists that our life presents. We don’t use phrases like, “You’re not big enough yet,” in our household because size doesn’t equal authority or the ability to be rational and make good decisions! At 3, Hannah’s rapidly catching up to me but still views us as, “Daddy is big, mommy is medium, and I am litte.”
Miggy: And now you're about to adopt a second child--how exciting! I'd love to hear anything you'd like to share about this journey. For example, how did you come to this decision and what drew you to your soon-to-be son?
Kara: Adam and I have always been interested in adoption. Growing up, it was how I assumed I would become a parent. I had never heard of a mom with a disability having a child and didn’t know it would be possible. We could certainly have more children biologically but we both felt called to adoption--specifically adoption of a child with a disability. We believe we have the parenting skills and the family environment that would give them a unique start in life and we’d like to make that difference in the world. Way back when I assumed I would adopt, I had no idea about the barriers in place for parents with disabilities who would like to adopt. In many countries and in many programs, it’s not even an option. Strangely, if you are interested in adopting a child with a disability, the rules are very different. Once we learned that adoption was indeed a real possibility for us (from other parents with dwarfism), we began to look at profiles. Rather than starting the process to be matched, we found our soon-to-be son first and then started the mad dash to China. We plan to name our son Eli. He is 7 and has achondroplasia. Like OI, it is a type of dwarfism. He’ll be short, like us, but won’t have brittle bones. Hannah is ecstatic to be a little (but taller) sister. We hope to travel to get in some time early next year but still have a long road ahead. We’d love you to join us on our journey at www.ayersadoption.com. We also have a Facebook page at www.facebook.com/ayersfamilyadoption.
Miggy: I'm sure you've had plenty of experience in dealing with other people--curious stares, not-so-polite comments... How can people best approach or respond to you, your husband and your son? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Kara: In the right mood, I do have to laugh at some of the comments and odd behaviors. On some days, I’ve been given a front row seat in a never-ending comedy show. People have asked how EXACTLY I got pregnant. We once had a neighbor who saw us on the back porch with Hannah (who was an infant). He asked if she was ours and where did she live. I’ll never cease to be amazed by what comes out of some people’s mouths. The best way to approach us is to relax. Don’t break your neck to get the door. If my husband holds the door for me, please don’t be a jerk and trample over me to take it from him! Questions are OK but in the right setting. We aren’t public property so it’s really not your right to ask personal questions while I’m trying to figure out which coupon is best for cereal that week. Kids’ questions are fine. Please, please don’t dislocate their arm as you drag them away from me. I sincerely don’t mind their questions. For adults though, your time has expired for ridiculous questions…. and you have google!
Miggy: Lastly, I usually ask moms what is the biggest lesson since becoming a special needs mom...so I'd like to ask you how has having OI impacted your perspective on life? And what do you feel is the most important thing you can teach your children in regards to differences?
Kara: I didn’t overcome OI and I haven’t achieved my accomplishments INSPITE of OI. In part, I am the person I am today because of OI. I’ve embraced my membership to an amazing community of people with a history, way of life, and a culture. It’s opened up my world in more ways than I can count and I’m so proud to pass on values of acceptance, inclusion, and pride to my daughter. Most of all, I want to teach Hannah and our future children to be kind. When my children see someone being treated unfairly, I want them to speak out against injustice. I want them to be proud of who they are and encourage others to do the same. Differences shouldn’t just be tolerated. They should be celebrated.
Kara, I loved this! Thank you so much. I love hearing the journey of parents who have children with special needs--mainly because I know how much I changed once our daughter was born--but to hear the perspective of an adult is really priceless. I learned so much from your spotlight, so thank you. I love that you clearly have a sense of humor and I think that's a valuable tool for life in general. I love your "relax" comment... so true! And yes questions from kids are one thing, but from adults they should definitely be thoughtful and situationally appropriate. And use google for crying out loud--ha! I also loved that you said you haven't achieved things in spite of OI, but rather you are who you are and OI is a part of that. Thanks again Kara and best of luck to you and your beautiful family! Your kids are lucky to have such wonderful, thoughtful parents.
As always if you or someone you know would like to participate in the spotlight please email me at thislittlemiggy at gmail dot com. If you know someone who you think would like to participate, please have them email me directly. Thanks!
Have a great weekend.