Thursday, April 13, 2017

Limb Differences 101

This Little Miggy || Limb Difference Awareness Month
Happy Limb Difference Awareness month!

How should one celebrate Limb Difference awareness month? I don't know. Don't go removing any limbs or appendages or anything... that would be super inappropriate. (If however, it happens accidentally WELCOME! You're now a member of the limb difference community!) Let's just stick to saying Happy Limb Difference Awareness Month and leave it at that shall we?

To be honest I didn't know April was LDAM until just recently. However, I wanted to take the opportunity to share some thoughts and feelings about limb differences here on the blog this month as this is something very near and dear to my heart. I'm not going to get all medical and statistical about this--although I will post a few good links--but really, I'm just going to tell you what I know and what I've learned.

First, I thought it might be best just to talk about limb differences themselves. What are they? What causes them? Why don't you just print a 3-D printed prosthetic hand on Lamp and call it good?

What are Limb Differences?

"Limb differences" is a big umbrella term to refer to anyone who might have 1 or all 4 limbs that are different in some way or another. Many different things can cause limb differences. Amniotic band syndrome is a common one, but also there are many other syndromes that can cause them as well. Of course accidents or medical amputation can also be the cause of a limb difference. Lamp has a much longer actual diagnosis that you can read about here and the cause was unknown, or in medical terms it was known as a sporadic genetic mutation. Which is cool because it also makes her sound like an X-men character.

Limb differences is a condition and like most conditions/syndromes/disabilities, limb differences exist on a scale, or a spectrum. A person could be missing a few digits and that is a limb difference. A person can be missing one hand and that is a limb difference. On the more "extreme" end a person might not have any arms or legs at all, and that too is having limb differences.

In the beginning of our journey it was (and sometimes still is) hard to help people understand that this HUGE umbrella term  l i m b  d i f f e r e n c e s  can mean really, really different things to each individual person with a limb difference.

I have found that often times people who know someone with a missing portion of one arm or maybe one leg have sometimes equated their disability to Lamp's because they both had limb differences. (It's actually very common for a limb difference to affect just a portion of an upper limb.)

When Lamp was a toddler there were two different times I came face-to-face with other limb difference kids and their moms while we were out and about. It was always exciting to see other kids with limb differences and in both cases these kids were older than Lamp, so of course the moms had a little more experience under their belts. However, in both cases these kids were only affected on one arm (both of them below the elbow--I'm making this distinction because again this makes a huge difference) and these moms said "You'll see, it hasn't held him/her back at all! He/She can do anything the other kids can do." As kindly as I could, I would try to help them see that this wasn't the case with my daughter. I would point out that my daughter didn't have typical legs and she couldn't walk, and she also didn't have any typical hands either so that presented other challenges. I wasn't trying to make these moms feel bad, but it was really important to me that they recognize the huge difference in our kids and they way they're affected.

Even when Lamp was a baby I myself had a hard time with this distinction. Back when I was still pregnant with here I was put in touch with some other moms who had kids with limb differences. I was even able to connect with one mom who had a child who was affected on all 4 limbs like my Lamp. Yay! I thought, finally someone who's differences matched our daughter's! Again, I was still pregnant so I didn't know exactly what Lamp's difference would be or what they would mean for her, but I also mistakenly thought that since this mom's daughter was affected on all 4 limbs that somehow Lamp would be like her. Specifically, she told me that her daughter walked on a typical timeline. I clung on to that family's experience when Lamp was born and really, really thought Lamp would walk on a somewhat typical timeline as well.

What I didn't realize at the time was that it wasn't just how many limbs are affected, it was how each individual limb looked and functioned AND then how they all came to work together. It wasn't until sometime after Lamp's first birthday that I realized she wouldn't be walking on a typical timeline and maybe never. I let go of that expectation and it was the best thing I could ever do. These days Lamp is a pro-powerchair driver and we're so glad she has been blessed with two different chairs to accommodate her and our families needs.
This Little Miggy || Limb Difference Awareness Month
I don't tell you all of this to make you feel bad for Lamp. We are not big fans of pity over here. I just to illustrate that not all limb differences are created equal so-to-speak and if you know or meet someone with a limb difference, it's a good idea to get to know what their individual abilities/disabilities are before making broad generalizations about what they can or can't do.

As far as prosthetics, well I'm certainly no expert but we did have a go at them for a while. You can read more about our decision to stop using a prosthetic arm here and a lovely little tribute to those fake plastic arms here.

Some people in the media you might have heard about who have limb differences:
Jessica Cox the pilot who doesn't have any arms or hands.
Nick Vujicic a motivational speaker who was born without any limbs.
Kyle Maynard author, speaker and adventurer and congenital amputee on all 4 limbs. I also met Kyle in person at the airport one time and he graciously agreed to be a part of my special needs spotlight series here!

Thanks for reading along. Let me know if you have any questions in the comments below and I'll try to get to them!

XO,
Miggy

Also here are some answers to some of the questions asked on my IG post from last week:

Q: Is Lamp left footed? 
A: Yes she is! She writes with her left foot and uses both of her feet for fine motor skills. In fact she no longer receives OT at her school because she writes at the same level of her peers.

Q: My son asks: Does Lamp have feeling in her upper limbs?
A: Yep! She uses them both all the time.

Q: My question is if you had any doctors try to tell you or project that Lamp would have cognitive or other special needs because of the LD when she was an infant?
A: Actually that was a big unknown when I was pregnant with her. At one point a group of doctors we met with (like 5 in a room) gave us their best-guess-diagnosis--which yes included cognitive disabilities--and I knew immediately it wasn't what Lamp had. I'm not saying I knew she wouldn't be affected cognitively--I didn't--but I knew this diagnosis wasn't her. So yes, I think they were trying to prepare us in some way. However, there was also a doctor who suggested that she might just have these 4 limbs that are different (never actually heard the term "limb differences" until sometime after her birth) and she might otherwise be a healthy and typical baby/kid and that we could take her home from the hospital after a couple days. I actually got mad at that doctor (not to his face) because I thought he was setting us up for disappointment and failure. He was right. We went home after 4 days and other than her limbs and some stomach issues as a baby, she is healthy and typical. (And super rad.) 

Q: I've wondered if your older girls, Lamp and PSP have thoughts or opinions on being a particular focus of your social media posts in connection with your blog, etc?
A: Yes and no. Because I do take a lot of pictures they'll let me know if they don't want a certain picture on instagram and of course I always comply. And if I'm not sure about a certain picture I'll ask if it's OK. I've talked with Lamp about the fact that I blog about her and about limb differences and such and she's OK with it. She lives everyday in her skin and with that comes a lot of curiosity from other children including a lot of staring, pointing and whispering. She sees me educate and advocate for her almost every time we're out in public and she knows I'm trying to do the same thing on line. I can see that for some kids with disabilities this may not be what they'd be comfortable with--and maybe she won't always be comfortable with it either--but she is placed in uncomfortable situations almost daily and she knows I'm doing my best to try and alleviate some of that discomfort. (Perhaps she doesn't see it quite so fully as I'm stated above, but it is something we talk about and something she has told me she's OK with.)

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