Predicting the future

This past week, I noticed that a woman in the waiting room had a teenage son with Down Syndrome. When I later spoke with her, I told her about my 2 year old daughter with DS.  Her eyes lit up, and we proceeded to speak in Spanish (very badly, on my part) about our kids. We had an instant kinship. A few days later, her husband came in and proudly showed us pictures of his son on his cell phone.  He wanted to show me that his son could ride the T with his friends.  He then showed me a video of his son dancing Latino style (very well, I must say), and we shared a "I-have-a-kid-with-DS-and-I'm-so-proud" moment.

Later that afternoon, I met a man in his 60's who has DS.  He came with a caretaker, and was in a wheelchair.  He kept falling asleep while we were trying to talk to him.  He was nonverbal and pretty out of it.

While they were 2 very different individuals, the contrast was completely obvious to me, right there in front of my eyes.  Growing up now with DS vs growing up before the 70's has huge implications for a child's future.  I read an article written by a mom who was recently told by her doctor that her 6 month old kid could be a janitor or a grocery store bagger someday, but nothing more.  She went on to say that these limited predictions of her child future are still very much widely believed, and listed some examples of other current issues that quite frankly shocked me (Click here to read the article to learn about a treatment for stunting disabled children's growth to be small so that their appearance will match their intellectual abilities, and also how a scholar was denied residency because his child had DS).

I have to admit that I had these misconceptions about the future of a person with DS before Evie.  Now that I know her, I know that while I would still be proud of her if she became a janitor or bagger, she could also become anything else she wants to be.

This is largely due to the fact that she has Early Intervention therapists 4-5 days a week, some of the best medical care in the world, governmental policies that provide for and protect kids with disabilities, loving family and friends who believe in and cheer for her, and our belief that God made Evie unique and gifted in ways that we cannot wait to discover.  I am thankful to be surrounded by people who are willing to learn more about DS and about Evie herself.

Right now, Evie loves music, dancing, and reading books.  This puts her in a good place to become a rock star, librarian, scholar, musician, a Zumba instructor, or J.Lo's successor.  I'd be proud of any of those (with more clothing though if she follows in J.Lo's footsteps)!

The Babysitters' Club, and fairy godmothers

I got the idea for this post because of a comment made by Evie's fairy godmother, joyosity.  

But first, this post begins with a clear plastic box. Entertaining Evie is getting tougher. I have mom guilt whenever I turn to the iPad, so this week when we went out, I put some items in a clear plastic box for Evie.  We brought this to joyosity's house today and she commented that it looked like a Babysitters' Club kit.  

For those of you who are not familiar with the Babysitters' Club, this was the best book series ever for a young middle school girl, right up there with Sweet Valley High. The girls in the Babysitters club put together personalized kits to take with them to entertain the kids when they babysat.

I was thrilled that my voracious reading of the Babysitters Club had paid off and that I had subconsciously followed my early tutelage by the esteemed Babysitters. 

So here is what my Evie-sitting kit had inside today: 
1. Dr. Seuss' Ten Apples Up on Top:  an extremely small board book with enjoyable rhyming. Evie loves this book. Link to the cute set that we have.
2. 3 medical gauze pads encased in paper, which make a deliciously crisp papery sound when Evie shakes them.
3. A Velcro apple from her Melissa and Doug fruit cutting  kit, so that she can practice her Velcro fruit prying skills. 

4. A bottle of bubbles for obvious reasons.
5.  A set of small flash cards with animals on them, partly to teach her animals but mostly so she can make a mess, because that's what she does best.

And if all else fails, she will enjoy emptying the contents of my purse.  She especially has a knack for pulling out my feminine products and waving them around in public places.

Oh, and if you're wondering what a fairy godmother does, she accepts the role of "fun person" and will take Evie out for fun experiences when she's older.  First on the list is apparently a trip to Fenway Park.  Did you know that if you're born at Beth Israel Deaconess Hospital (or maybe just in the NICU), you get a free pass for a tour of Fenway?  How cool is that?  We are thankful for awesome friends who want to be a part of Evie's life!  We just need her to get over her shy phase....

Evie's Adventures in Storyland, from a sensory sensitive kid's point of view

Hi Evie fans!  Our first post-pandemic trip was to the  Storyland amusement park in Glen, New Hampshire !  Evie did well with the 2.5 hour d...