Here’s my card

It reads: “Hi! My name is Laelia! ‘LAY-Lee-Uh’  I have a disability called arthrogryposis. It means my joints are stuck. I also don’t have the muscle to walk or lift my arms. But I’m smart! So please include me in conversations!”

Having Laelia hand these to people has been so great!    It provides an instant explanation of her disabilities without me having to explain to yet another person about arthrogryposis, but it also opens up an instant, informed  dialog. It has helped people who have never dealt with disabilities avoid saying  things like, “What happened to your daughter?” or “Why can’t the little girl lift her arms?” that us moms HATE responding to constantly. (The zoo  and grocery store hold the biggest offenders!) It also clearly states that I want my daughter included in conversations. A lot of people ask me “harmless” things in front of Laelia about Laelia.  But not after they read the card!

Another mom (the one who started the AMC support group) told me that  business cards would smooth over first time meetings with people. I thought it was a cute idea, but I never thought I’d go through so many of these things! I had 250  cards made for free online (cost me $5.99 for shipping) and already I have handed them to strangers,  gym childcare staff,  people who work within special needs communities but have never heard of arthrogryposis,  and in November I’m handing them to airline employees!  

Actually the business  card suggestion was made after I shared our not-so-great experience with a flight attendant  during our first trip to Shriners to get Laelia evaluated for surgery. This head flight attendant with Continental, Cindy,  demanded that my daughter stand instead of sit while waiting for the bathroom at the rear of the plane. At first I geared up for a teaching moment (which happens way more often than I would like in the real world), but she got so mean so quickly (telling me that allowing my daughter to sit  on the dirty floor was awful, and otherwise demeaning my parenting)  that I was choked up with tears before I could blurt out the painful truth of our situation. I tried to tell her that this was how Lali “stands” because she’s different, but before I got the full sentence out I was shot a look that was incredulous and outright mocking, then I was bluntly ordered to pick up my child NOW. And that was when  Laelia began to cry. I overheard that awful woman talking about us as we were back in our seats (a mere few rows from the back, row 34 of 37).  Her fellow employee had to explain to her why  the little girl  didn’t stand.  The woman became even more incredulous and said we should have sat in a different seat then.

When I’m emotional (angry, sad, hurting etc.)  I can’t educate. When I can’t educate then hard-headed people can take advantage of us, and hurt my daughter’s feelings.

So this card was made with Cindy in mind. But thankfully it’s been used effectively to avoid Cindy-type situations.

8 Responses to “Here’s my card”

  1. Carolyn says:

    Those cards are adorable and sweet and I love that they’ve been effective! Good for you!!

  2. Missy says:

    What a great idea! And a graceful way to cope for both you and Lali in stressful situations! Love it!

  3. Anonymous says:

    love them!

  4. Robin Clark says:

    The cards are a perfect way to inform those who are uninformed and/or simply lacking in social graces, like the aforementioned Cindy. Bravo!

  5. Melissa Rowe says:

    I think it’s awesome. The design is so Laelia, too. :]

  6. Bethany says:

    Great idea! Take THAT, Cindy… :)

  7. Ani Samargian says:

    I love them Alexis!!!

    I should update Abby’s cards to something pretty like this!

    LOL :o)

    LOVE LOVE LOVE them!!!!!

  8. Jessi Spring says:

    I love this idea Alexis!!! I may have some made too! Thank you!

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