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!
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?
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!
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.
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?
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.
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!
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? 🙂
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.
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?
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.”
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?
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.
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 daughter? Is there something you wish
other people knew so as to avoid awkward or hurtful situations?
people–curious stares, not-so-polite comments… How can people best approach
or respond to you, your husband and your daughter? 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!
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?
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.
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.
Hearing about Kara's storyis such an inspiration…n definitely she has a wonderful sense of humor..
btw, I posted earlier once asking if you think of adding a facebook link for your blog..My perspective definitely changed about special needs people and I want more people to know the same..
Anon–do you mean just a link to share with FB or an actual FB page? I could add a FB link with the new blog design…still mulling it over.
gorgeous family, inspirational.
Love it.My late husvand had severe OI.I had a stroke at 15.we adopted out son with moderate OI and CP from Kolkata India in 2001Nigel Aabesh is 15 now.We wanted to adopt a girl from China named Lilly who had OI but it dudnt work out.I have a 6 yr old typical child too I had.I love seeing other disabled parents esp. My OI family.
Renee–very cool! I love hearing how readers relate to specific families…thank you for sharing.
Love it.My late husvand had severe OI.I had a stroke at 15.we adopted out son with moderate OI and CP from Kolkata India in 2001Nigel Aabesh is 15 now.We wanted to adopt a girl from China named Lilly who had OI but it dudnt work out.I have a 6 yr old typical child too I had.I love seeing other disabled parents esp. My OI family.
Love your story. My husband has moderate O.I. and we have 2 children (now young adults) who luckily do not have O.I. We too have our share of stares and dumb questions (mainly from adults). My husband handles it all with a great sense of humor. Wish you all the best for your future.
Thank you for a wonderful spotlight! I'm always interested to learn about how adults deal with their challenges. I didn't know much about OI until these last two spotlights and I was excited to learn more! Thank you!
loved your story I'm 24 years old and have moderate oi and i also have a daughter aged 5 and a son aged 2 both with oi we try to get on with things as normally as possible but i always struggle with the tuts and stares wish people would ask rather than assume. my son also was born with clubbed foot so was in leg casts for 6 weeks from 6 weeks old and my daughter broke her leg the same time so i had two children in leg casts and being a young mum i got a lot of evil looks in the supermarket i can tell you that lol. But luckily i have my mum who has become a pro with oi having me and kept me strong. all the best from my family to yours xx