Special Needs Adoption: Limb Differences

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limb-differences

When my husband and I first considered China adoption we were told we’d wait roughly six years for a child. It seemed our journey was over before it started, but our adoption agency suggested the special needs program (shorter wait). I had two things to say about that: Hell and no.

I was intimidated by “special needs”. Special needs were something you handled if those were the cards you were dealt. You know, the whole “God doesn’t give you anything you can’t handle” perspective. I knew there were people who raised their hands to parent special needs kids…I didn’t think we were those people. But before we ran screaming from the room, we took the time to learn what we were turning down.

The conditions listed under the umbrella of China special needs adoption program range from pretty much nothing, like a missing thumb to more complex conditions, like Spina Bifida. Families choose what medical needs they were comfortable parenting. We did research, took deep breaths and jumped in the deep end of special needs adoption.

It’s hard to get our heads around the fact that certain cultures classify minor imperfections as special needs. I don’t say that to spark a discussion on how lousy the Chinese are for this line of thinking, because I don’t see it like that. I tell you because it might change your thinking about whether a special needs adoption fits your family.

Early in our “paper pregnancy”, we got a list of different needs and conditions. We had to check boxes to indicate if we’d be open to certain issues. Listed was “limb differences”. Having no clue what that meant I summoned my private physician, Dr. Google. I learned: …congenital (born with) absence or malformation of limbs. May result from injury or disease requiring amputation. The causes of congenital limb differences are frequently unknown…I thought “we could handle that” and checked the box. A few weeks later, I was staring at a picture of a seventeen month-old boy whose special need was “congenital hand abnormality”. I fell hard for this kid in the picture.

And here I am. So, what’s life with a limb difference kid like?

My son is four now. He’s missing his right hand (he has a stub and four finger nubs). “Get down!” and “don’t touch!” fly out of my mouth about sixty-trillion times a day. No different from any other mom of a small terror I mean boy, hmm?

He can climb a ladder, catch a ball, and open anything he’s generally not supposed to have. He can put the smack down on his brother, snatch toys from other kids and dangle them enticingly out of reach till the other kid cries (I’m so proud). He most recently got in trouble for swiping my Kindle, slathering it with body lotion and pretending it was a baby. I have used many adjectives to describe my boy terror (some have four letters). Handicapped was never one of those words.

My son is growing up adapting his environment to his anatomy. Buttons and shoelaces are challenging, but he’s mastered pushups at the tender age of four. I have zero doubts that my little fireball will conquer he sets his sights on.

The hardest thing about parenting a limb difference kid is managing my reactions to people’s stares or comments. Kids are curious. They want to look, ask “why” or want to know if “it’s an owie” (most adults can figure out it’s a congenital thing). Kids take my explanation of: “this is how he’s made” at face value and press on scaling the jungle gym or trying to take back whatever toy my little grabber just swiped from them (sigh, we’re working on that).

Occasionally, we’ll get rude or ignorant. A boy of about seven screamed “OMG did you SEE that kid’s hand” at a volume probably heard in the next county. A woman on the bus acted as if she’d seen Sasquatch and remarked audibly “how gross” to no one in particular. It’s hard to be chill and not give these people the verbal smack down (or trip them and pretend it’s an accident). Even though my instinct is to rush to my kid’s defense when someone says something tacky, I don’t do it. If I police every dumb comment, my little boy won’t learn his way in a world where people are sometimes just assholes.

People are going to notice his anatomy is a little different. He’ll have to learn his own way of handling comments, especially ugly ones. We all want life to be easy for our kids and sometimes it’s hard to see him standing out when he’d rather fit in. My son’s limb difference isn’t always the first thing people notice, but eventually, they notice. Reactions range from no reaction at all to friendly curiosity. Mean has been a rarity. I haven’t seen anyone tease him yet, but I’m sure that day will come, probably when I’m not there to witness it (kids are sneaky like that, ya know).

There is no “cure” for limb differences. Maybe someday there will be technology to grow a hand in a lab but we’re not there yet. I can’t name one thing he can’t do that would be enhanced by a prosthesis so we’re holding off until he’s older to decide on that. A cosmetic semi-functional “slip on hand” that looks and feels real (in kind of a scary way) will be an option when he’s bigger. We are leaving the decisions in his court.

He refers to his little hand as…well, his little hand. Right now, he’s happy to show you if you want to look. “It’s just my little hand” he’ll tell you and then moves on to telling you he likes your pretty dress and asking if you have candy in your purse. He’s kind of a player like that. We sometimes call it his “lucky fin” like Nemo. This is how I sometimes explain his limb difference to children. I’m happy Disney came up with a more relatable limb difference role model because otherwise, we’d be stuck with Captain Hook and everyone thinks he’s sort of a douche.

Related post: The Beauty of Imperfection 

Comments

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  1. 3

    says

    I applaud anyone that adopts a child with a special need. When it’s your born child it’s something you are dealt like this is saying, it takes a special person to choose that from the get go. I had to worry about stuff like this with my pregnancy from some medication I had to take and wondered if she would be born with a defect. So this is a thought that has gone through my mind for almost a year. Thank God there are people out here that are adopting these kids and giving them a good life.

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  2. 4

    says

    My cousin adopted a special needs baby. Jody has Down Syndrome.
    She has brought more blessings into this family than I can count. When people say what a saint my cousin is for adopting her, I always grin, because her response is oh no, we are the ones who are blessed.

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  3. 6

    Jessica says

    My little brother has the same limb difference. One small hand and tiny stubs as fingers. He just went off for college two weeks ago. He’s been smart, loving, outgoing, mischievous, and just as much a pain in our parent’s ass as I am in every way. He also plays football and the drums. He’s no different from anyone else. And believe me, he is right on target with the ladies. A little too much, if you ask me ;) I love that you wrote this to show that beneath what people term “disabilities”, we are all human and imperfectly perfect.

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  4. 8

    says

    Interesting. I’ve never thought of my sister as special needs, and she has a little hand. We refer to it as that and she sometimes refers to memo as well. However, she has gone through some bullying by kids she grew up with, causing her to want to go to a magnet boarding highschool so she could start over.

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  5. 10

    says

    He’s just gorgeous – what a ray of sunshine! We have a preschool children’s TV presenter here in the UK with a congenital arm defect and aside from some douchebags who complained at first about her “scaring their children”, she was really well received. I think it’s great for children to see that not everyone is blessed with perfect limbs but they can still be totally awesome. You can read about her here: http://www.theguardian.com/society/2011/feb/21/tv-presenter-cerrie-burnell

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  6. 12

    says

    A perspective on that whole “god doesn’t give you anything you can’t handle” comment. I am a mother to a special needs kiddo, she is autistic. I have seen many parents not handle their children’s diagnosis and many that step up to seemingly impossible circumstances. Less to do with god and more to do with the individual person, so it seems to me it is a cop out statement designed for people that don’t have any idea what to say to a parent of a special needs child.

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    • 13

      says

      Yes!!! My son has Down Syndrome and I HATED when people would say that to me! Thankfully, now that he’s one, everyone I know accepts that he’s just Thatcher, and we can talk about how awesome he is, instead of how many chromosomes he has.

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  7. 14

    says

    What an adorable little boy! My son has special needs as well, he is missing part of his 5th chromosome. At 6 he doesn’t walk or speak and he had a feeding tube. The looks and comments are the hardest part, because although it may not be what we expected, he is the light of my life!

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  8. 17

    says

    This is an uplifting story. There was a boy missing a hand in my son’s preschool class. It was a great opportunity for this boy named jack to share his story and for the kids to ask open question to him and his mom. They soon realized that: 1) No it didn’t hurt him, 2) yes he could still do all of the things that the rest of the kids do and 3) he was a great kid with a great sense of humor. I am so happy my son had the chance to meet Jack at such a young age to learn that all differences were not disabilities.

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    • 18

      says

      That’s awesome. I’m glad Jack’s family was so proactive in reaching out to his class to help them better understand. I may have to look at doing something like that when Zack starts school.

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  9. 21

    says

    The whole”God only gives you what you can handle” is referring to temptation not the health and well being of your child. My daughter doesn’t suffer through her issues because we are stronger than the families of her normal peers. As a Christian, I belief God helps us handle what we are given but I call BS on the other. Kudos to this family!!!

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