Spina Bifida

A Mother’s Lessons


My work on the Cincinnati ReelAbilities Film Festival organized by LADD, Inc. has connected me with some pretty incredible people in our region. Amy Delgado is one of them.

ReelAbilities is about bringing people together to learn from and about each other and to celebrate our differences that together make us stronger. Amy is a mother to two beautiful children who I got to meet at our Festival Launch Party earlier this year. Our purpose hits home personally for her as her every day involves striving to create solutions for encouraging kids, and in particular, her daughter’s growth.

Amy Delgado is a Cincinnati mother to a daughter who has Spina Bifida, and writes a blog called Ability Hacker. She shares what she learned from parenting.Amy was 20 weeks pregnant when she and her husband got the news that her daughter would be born with Myelomeningocele (more commonly known at Spina Bifida). The years that have followed have been met with creative problem solving, working through challenges, much love, and sharing their lessons with others. Amy has a blog called Ability Hacker (named, she said, because, “ a ‘good hack’ is slang for a clever solution to a problem, and ‘hacking’ is the act of creating that solution.”) where she shares her lessons and insights with other parents of children who have disabilities.

I wanted to learn more about Amy and her insight that I think all of us can learn from. 

Lisa: What are some things you would like to see parents teach their children about kids who have disabilities?
Amy: There are three things that, in my ideal world, parents would teach their kids about disability.

1. In some ways we are different, but in so many ways we are the same.
Look for the similarities rather than the differences. Maybe your kids and mine both love ice cream, or maybe both have curly hair. Everyone has things that are different about them – but we also have a lot that is the same. Finding sameness breaks down the barrier disability sometimes presents.

There is a fantastic episode of Daniel Tiger in which Prince Wednesday’s cousin Chrissie (who has a disability) comes to visit, and the topic of how to approach kids with disabilities is beautifully presented. The little jingle sings, “In some ways we are different, but in so many ways, we are the same” (Episode 133: Daniel’s New Friend/Same and Different). I’d love every parent to watch this episode with their kids.

2. Approach kids with disabilities & say hello.
When we go into a store or a restaurant, we draw a lot of attention. We come in with a determined, curly haired charmer whose leg braces are covered in butterflies and who is usually gleefully chasing her little brother around while using bright blue arm crutches. Adults react in one of two ways – they either smile at us and comment on how cute our kids are, or they look away / see their kids staring and shush them.

PLEASE please (please) do NOT shush your kids. Please don’t look away. Please DO smile and say hello. Please DO encourage your kids to come up and say hi and talk to my children. It is totally ok if they ask any questions. We know they won’t have the perfect words to ask what they want to know, and that’s ok. It really is.

By letting kids be curious and ask questions it teaches them that it’s OK to approach people with a disability. It opens a dialog and creates a conversation. When a parent shushes a child and encourages them to look away – that parent is inadvertently teaching their children that disability is something that is wrong, and that should be separate from the rest of the world. Kids with disabilities want to be included. We, as parents, need to model this inclusion and openness and kindness to all people, including those who have a disability.

I know it’s scary to let you child open up their mouth and not be able to control what comes out … but trust me… it’s so much better than the alternative.

3. Get creative and figure out ways to include children with disabilities in play.
Kids with a disability face a lot of barriers. For my daughter, who was born with Spina Bifida, it can be hard to figure out how to play with other kids because (1) she comes with equipment which is a physical barrier, and (2) she can’t run or climb as fast as others.

Usually, figuring out how to be included in play is left squarely on the shoulders of the child who has the disability (the one who is already trying to surpass so many additional obstacles vs. a typically developing child). This often results in the child playing by themselves, and missing out on the important lessons learned during free play and interaction with other kids.

I would love it if parents & teachers would work with all kids to help them figure out new and different ways of playing that are more inclusive. ALL kids (not just the ones with a disability) will benefit from learning these skills – it teaches kids to think critically, to be creative, and to build a resilient spirited approach to life. As with most things, when be figure out how to be inclusive, it benefits EVERYONE.

Lisa: What has been one or some of the greatest gifts of being a parent for you?
Amy: One of the greatest gifts I received is simply getting to BE a parent. It is a role I’ve always wanted to be in, but the path to get here was quite a bit longer than I expected. I was 30 years old when I finally met the right man for me, and then our road to becoming parents was bumpy and wrought with unexpected twists and turns. We eventually found our way to fertility treatments, and then to IVF, which finally (finally!) brought us Lily and Ben.

Now that I am a parent, the experience has given me so much. A few of the biggest gifts that come to mind are:
• Becoming a part of multiple communities that I would not have connected with otherwise.
• The joy from noticing & celebrating every little accomplishment.
• I found a strong passion for helping parents / children with disabilities.
• Laughing (so much)!
• Bursting love (especially when one of my kids leans over and whispers, out of the blue, “I love you Mommy.”)

Lisa: What is a life lesson you have learned from your children?
Amy: The most important life lesson I’ve learned is how important it is to build resilience within ourselves and within our kids.
Resilience is defined as: “the capacity to recover quickly from difficulties.” The tricky thing about resilience, though, is that in order to build it, we must fall down. We must be given the opportunity to fail. We must face tough times. And when we face these difficult things, we then have to practice getting back up and trying again. We have to practice recovering with grace. We have to practice looking back and learning from what we did before. We have to practice finding the positive in the experience of failure, and feeling pride in ourselves when we find ourselves back in fighting shape after going through such difficulty.

Sometimes, resilience means making a brave choice or accepting that what we thought we wanted isn’t really what is best for us. Sometimes it means pivoting and finding a different way. Sometimes it means looking for new and creative ways to solve the challenge facing us.

Lisa: What is a piece of advice you received that has impacted your life?
Amy: We received Lily’s diagnosis of Spina Bifida when I was 20 weeks pregnant. As we tried to process the diagnosis and all of the information flying at us, our thoughts turned to the drastic changes we we would need to make in our lives in order to take care of her. We started talking about selling our house and downsizing to something smaller, about one of us quitting our jobs to take care of her, and started considering moving back to Florida to be closer to family.

A couple weeks later we found ourselves sitting across from a developmental pediatrician at Cincinnati Children’s. As we talked, the conversation turned to what we needed to do to prepare for Lily’s arrival. When I asked if we should be trying to make an extreme life makeover in the few months we had before Lily was born, the doctor calmly said, “Why don’t you let her show you what she needs once she gets here?”

We talked for quite a while, and it felt like taking a breath for the first time in weeks. It was also the first time I’d thought about things through that lens – letting HER show US what she needs when the time comes. This advice continues to resonate today. Lily is now 5 years old and sometimes I find myself planning too far out – like thinking about whether she will go to college and what type of accommodations she’ll need if she does! When I start down this path, I remind myself of this advice, and reel myself back into the present.

Oh, and by the way … my husband and I both still work, and we did not sell our house or move to Florida. As it turned out, our ranch style house is perfectly suited to our needs!



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