Mum on daughter with limb difference: “She was also born with extra awesome”

Amy Webb and daughter Lamp

Ohio mum and blogger Amy Webb is leading by example, encouraging her readers to celebrate the differences in kids with extra needs.

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"Mom I love you more than pot stickers. And somewhere way, deep down inside… like REALLY, REALLY deep I love you more than a Disney cruise. But it's like DEEP down inside!" OK kid I get it… I'm just a hair above a boat with a mouse on it! 🚢🐭 I'll take it. 😂🙌🏻 #Lampsays . Hey you guys, I'm looking for some new #specialneedspotlight families. Each Friday on my blog, This Little Miggy Stayed Home, I spotlight a special-needs family or individual. It can be a medical issue, traditional special needs, common or rare conditions alike. Special needs parents, individuals with disabilities or even siblings–I love having a variety of unique points of view! The purpose of the spotlight is twofold–one is to give these families a voice. Most of us don't sign up to be a special-needs family and it completely changes our world and our worldview (for the better might I add). Additionally, the spotlight is all about spreading education and awareness through the power of storytelling. These spotlights have been perspective changing and therefore life changing for me, and for many other people as well. So please if you or someone you know would like to participate email me at thislittlemiggy@gmail.com. Tag a friend below if they would make a great spotlightee! Happy Wednesday!

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Appreciating difference

Our own misconceptions and ignorance often colour the way we view and speak about disability and differences.

Lucky for us, some families are keen for us to do better. They’re sharing their stories and teaching the community more about how it feels to have a kid who is visibly – or otherwise – different (as well as the stories that capture snippets of how life feels for kids with additional needs.)

Sometimes it’s helpful to get the inside story, and while onlookers are not entitled to it, when it’s deemed appropriate and is forthcoming, it can help people who don’t have disabilities to better understand when difference can be a real challenge for parents and their special needs kids. Of course, these stories show us the great bits about parenting disabled and different kiddos, too! Amy’s in particular illustrates why diversity and difference should be celebrated.

 

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Limb Difference Awareness Month// "What's wrong with you?" Imagine having complete strangers ask you that question on a somewhat regular basis. If you heard it enough would you start to think that something might be wrong with you? Now imagine hearing that question on a semi regular basis, and you're only six years old. . Over the years I've tried to talk really positively about disability, because I feel positive about disability. But sometimes I think that I've sugar coated it. Specifically I fear that I've sugar coated what it's like to have a child with a disability in a world where disability is rarely represented and if it is, it is most often seen as inferior, sad, undesirable, and wrong. So today I'm sharing more candid thoughts and stories on the blog about what daily life can be like when you have a disability and present very, very differently from the world around you. I hope you click over and read. Link in bio.

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Mindset shift

Amy writes about her daughter “Lamp” on her blog and Instagram.

“Lamp, was born with a rare condition called Microgastria and Limb Reduction Complex…  She has a small stomach (microgastria) and limb differences on all 4 limbs, which you may have guessed, means her limbs are different. The good news is she was also born with extra awesome,” Amy explains on her blog.

Lamp uses her feet for many fine motor skill-focused activities and uses a powered wheelchair for mobility – or uses a scooter to zip about the house.

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"It's going to be OK. Most likely, more than OK. Most likely, amazing. Because here's the deal–every single human being is a gamble and we love them anyway. Millions of parents have had an ultrasound appointment where everything came back positive and normal, and they went on to have these "healthy" children who grew up to be drug dealers, belligerent teenagers, liars, cheaters or just incredibly, terribly average people. And guess what? They love them anyway. When you think about the time you spent dating and choosing your mate it seems almost insane that we then go on to invite tiny humans into our lives where we get absolutely NO say in who these little people are. We get no say in their personality, likes, dislikes, abilities, or disabilities. And we love them anyway. Every single human is a gamble and we love them anyway. People with disabilities are no different. I promise that you will love them anyway." . Sharing advice I'd give to newbie speical needs moms and other thoughts over at @wolfandfriends.shop today. If you don't know @wolfandfriends.shop you should check them out–design oriented site with special families in mind. Link is on the blog. Click on over yo.

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“She was perfect”

“A child with limb differences leads the way for how they are going to use their body,” she explains. “So you have to be open to that and not force them to do what you think they should do,” Amy told Babble, pointing out that disability and difference have often been routinely hidden away.

On meeting her little girl for the very first time, Amy said things could not have been better.

“She was perfect and she’s our baby and she’s exactly who she’s meant to be.”

What followed were some adjustments, as the family learned more about their new arrival: 

“It’s been a gradual shift in mindset. First overcoming the fear and loving our girl exactly as she is, a journey through hospitals and surgery and therapy and prosthetics and wheelchairs, an understanding and rejection of pity and ableism, and most importantly developing an appreciation and love for humanity in all its wild, wonderful, and endless variety.”

For those who may not have come across the term before, ableism is loosely –  “discrimination in favour of able-bodied people” – and refers, in part, to the idea that able-bodied humans are the default or “normal”.

Listening and learning

Amy’s written a guide for non-disabled parents who may feel unsure about language and behaviour when they are hanging out with someone with a disability.

Hopefully after reading this, they can be better prepared and not behave like a schmuck when they encounter someone with a disability or difference. 

Amy says that:

  1. It’s okay for kids to ask questions about differences and disabilities – and good to respectfully address those straight away with your child – rather than remove your child from the encounter altogether and send a message that something is ‘wrong’.
  2. Encourage kindness – if you child responds to a difference or disability using negative language, it’s very important to correct that with more appropriate language immediately and remind your child to be kind.
  3. Find common ground – while some disabilities may highlight differences, help your child to see the similarities between themselves and the person with a disability.
  4. Emphasise strength – disability or difference should not be viewed with pity. Amy says parents should help kids see disability means “differently abled” and focus on strengths rather than limitations.

This is such good advice for parents and people who want to do better, but aren’t sure how. Thanks Amy!

You can read more about Amy and Lamp’s life together – from pregnancy to 7-year-old kiddo – here.

Amy’s also tracking the experiences of other families with extra-needs kids. Read those here.

 

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It's this special girl's birthday weekend, and therefore she is also today's #specialneedsspotlight. I actually did this for the first time 2 years ago and today's post in an updated version of the one from back then. It's a great place to read our story and see how we've evolved as a special needs family over the years. Mainly, it's been a gradual shift in mindset. First overcoming the fear and loving our girl exactly as she is, a journey through hospitals and surgery and therapy and prosthetics and wheelchairs, an understanding and rejection of pity and ableism, and most importantly developing an appreciation and love for humanity in all its wild, wonderful, and endless variety. . Thanks for the entirely new world view and radical shift in perspective Lamp! NBD. Couldn't have done it without you. Happy Birthday my love. ❤️Link in bio. Happy Friday. 📷: @alexdavis.photography

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If you’d like to know more about avoiding ableism and positively adjusting your response to disability or difference – head to the Australian Network on Disability.

 

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