A Special Needs Highlight: Limb Differences

April is Limb Loss Awareness Month.  Children with limb differences are often available for adoption from China.  Occasionally, children with a visible need can be overlooked as they wait to find their family because potential families are afraid of not only how the rest of the world will view the child, but also how they will accommodate for the child’s need within their day-to-day life.

It is our hope that through these Special Needs Highlights a parent who is parenting a child with this need might be able to dispel some of the fear surrounding children with this need by providing fact based, real life, succinct information to use to do further research.  If you are considering a child with this need and would like to connect with a mentor parent, we would be happy to put you in touch by emailing us at redthreadadvocates@gmail.com.

This week we’re interviewing one of our very own Red Thread Advocates.  Kristi is mom to an amazing three-year-old daughter with a limb difference.  Thanks for helping us spread awareness, Kristi!

What is your child’s special need?

My daughter was born missing her right hand. She is now three years old.

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What has been easier than you thought?

It has been easier than I thought for her to adapt to everyday tasks. I like watching her figure out how to solve the issues her special needs presents.  She has found unique ways to do things such as put on her clothing, riding her tricycle, buckling her car seat, and even playing instruments.

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What has been harder than you thought?

It has been harder than I thought to watch how people and children respond to her not having a hand.

What has been the biggest challenge?

The biggest challenges lie ahead for my sweet girl. She stays home with me during the day and so I can help her whenever she needs extra help with a task.  As she gets older, and attends public school, she will have to figure out how to navigate life without her family support center always nearby.  In addition, more complex tasks for her will include tying shoes, climbing playground equipment, playing certain sports, and learning to cook.

What does day to day management of their need look like?

Her daily needs include daily help with more complex tasks and being patient while she figures out how to do things on her own. We also spend time together figuring out how to help her do things more easily.

When families consider this SN, what specialists should be in their area?

What should they make sure their insurance covers well? The largest resource for this special need would be a children’s hospital that specializes in limb differences. We use Shiner’s Hospital.  They are also experts in building specialized prosthetics for whatever our daughter may be interested in.  In addition, your insurance would need to cover an occupational or physical therapy that may help your child as well.

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Have you had challenging interactions with other people about their special needs?

How have you responded? Adults and Children are curious about this very noticeable special need. People will stare and children will point and ask my daughter questions about it.  We started preparing our daughter for this before she could even speak in sentences.  We and/or She will confidently explain that “She was born this way and that this hand does not hurt her.”  Addressing this issue directly and confidently helps.  Once children understand they don’t seem that interested in her hand being different anymore.

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What is the best thing about parenting a child with this need?

The best thing about parenting a child with this need is watching her be amazing. She inspires me to be more patient and more determined to accomplish things.