False Success: Good or Bad?

I recently heard the story of Ike Ditzenberger, who has Down syndrome and scored a touch down in a high school football game. The detailed story includes an account of how the opposing team was under instructions to let him score and to try and make it as exciting for him as possible. I have very mixed feelings about this. On the one hand, that was a whole lot of people pulling together because they cared about this boy. They wanted him to have this amazing experience, essentially to make a dream come true for him. On the other hand, it was kind of a lie. And I wonder if this sort of false success undermines the cause of Down syndrome awareness. Individuals with DS are capable of so much without others just pretending that they have achieved something. I'm really conflicted. What are your thoughts?

And while you're thinking about it, check out this video of another high school athlete with DS: Kody Conover shoots a 3 pointer while playing basketball in Vernal, Utah. It's true that the other team defends him light, and in some moments, not at all. But my husband points out that in the case of a 3 pointer, you don't want to risk fouling and giving the shooter a chance at 3 free throws; better to risk the 3 point shot. So maybe the other team goes easy on him for strategic reasons and possibly because he has DS, but he makes that shot all on his own, and that is just amazing.

You've come a long way, Baby!

Mermaid continues to progress at a steady pace. She gives us all something to smile about.

Mermaid's words or word-like syllables:

mom*dad*baby*hi*bye*up*down*out*water*no

yeah*eat*help*dance*toes*shoes*teeth*nose

hair*cheese (for taking pictures)*Jesus*me*banana

ball*go*meow*woof-woof*night-night*okay*thank you

please*wash*pee-pee*belly-button*waa, waa, waa (baby crying)

push*uh-oh*two*what?*yes*ow*grandpa*me*star

Mermaid's signs include:

water*milk*more*go*me*star*boat*shoes*bird

Mermaid's skills include:

climbing up bunk bed ladders, walking upright ascending/descending stairs while holding to the railing, digging, turning lights on and off, climbing onto the dinner table, dancing, singing, moving chairs to climb up to whatever she's interested in, feeding herself with a spoon, thumbing through books, brushing hair, brushing teeth, hugging, comforting pats, twisting the tops of bottles and cups, stealing pacifiers, opening refrigerators, opening drawers and emptying all the contents onto the floor, greeting everyone with a smile, pat, five, handshake and/or kiss, simple puzzles, and other feats of strength and dexterity.

She is working on JuMpInG!!!

What Would You Do?

At the bakery last night, my co-worker saw the very strange number of bagels requested. They were strange because they weren't multiples of 6 or 12, which is what we normally see: 18 sesame bagels, 24 everything bagels, you get the idea. He commented on the bizarre numbers, calling the people who put the order together 'retards'. I can't say whether or not I'm overly sensitive, but I did have an internal debate before telling him that the noun 'retard' bothers me because my son has Down syndrome. Maybe I shouldn't have used my son as an excuse for being offended; maybe I should have been able to say plainly, "That's really not okay with me." As it is, I still feel a little guilty for saying anything because I know he didn't mean offense and he probably doesn't feel like he can be relaxed around me. oh well.

In any case, it made me think of an episode of "What Would You Do?" from this past May (Season 4 Episode 3). This is a hidden camera show where they set up unfair or offensive situations and see who is willing to step in and help, or rescue someone. One of the situations is at a grocery store where a bagger with Down syndrome is being verbally abused by a variety of customers in the check-out line. The people being abusive and the bagger are all actors, but it is still a little hard to watch, for me anyway. It is also so inspiring to see yet another young adult with Down syndrome who is articulate and capable. Check it out. Let me know what you would do.

Red Lipstick Therapy

Scrutinizing my reflection and contemplating my upcoming birthday I realized that I not only look my age, but I also look something like my maternal grandmother when she was my age. I decided to accentuate the similarities with bright red lipstick like Grandma (and all the hollywood starlets of her day) used to wear. The change was dramatic. I was mildly uncomfortable, but genuinely emboldened. Red lipstick, it turns out, makes me feel cheerful.

Mermaid noticed the difference right away and was mesmerized by the presence of lips on my face. She focused trying to imitate all the shapes they made as I spoke or sang to her. Could this be a break through in her speech development? Maybe. I'll be wearing red lipstick more often... for both of us. Thank you, Grandma!



(sorry to double post. I'm trying to decide if I want my life integrated or compartmentalized, so I may be double posting a little as I figure myself out.)

Wowza

Both kids in Halloween pajamas.

Funny stuff first: While The Boy was sick a couple of weeks ago, he had less restraint in the potty-training department. As soon as I pulled off his diaper, and before I could sit him down, he peed straight onto my crotch. True story.

This kid is impressive. He is potty-training very well. In fact, just a few weeks ago, he signed 'potty'. At first I thought it was just a desperate attempt to get out of his highchair. But when I put him on the potty, he went! He knew he needed to go. He knew how to say it. Amazing. In fact, potty training is going so well that when he sat on his new Baby Bjorn potty the first day, he held his pee until I put him on the big potty. Twice.

Yesterday, he asked for 'water' using sign language. This is monumental both for communication development and nutrition. He generally despises drinking, but the past few days have seen a real upturn in that department. In fact, I let him hold his plastic Ikea cup with two hands and he drank all by himself! When I tried to get The Boy to show off for his Pops, of course he dumped the water all over himself and eventually threw the cup on the ground, but I know the skills are there.

His PT talks about how he progresses every time she sees him. It maybe only a tiny bit, but he has the motivation to learn things on his own. He is on the very cusp of crawling. He can army crawl a bit, but he also pulls himself into quadrapd and is starting to grasp the idea of mobility (and the ensuing freedom).

His OT talks about how his small motor skills have developed ahead of his large motor. Apparently that's a very positive sign of intelligence. He has a very long attention span, often playing with only one or two toys for the entire hour-long visit. He's got pretty good pincer skills, and we never even practiced that. He points with a single finger. He loves books. And it has to be the book that is being read. It's no good giving him one book to play with while you read a different one. No good.

His Speech Therapist talks about how he is always looking at things, working them out in his mind. He's constantly engaged in serious observation, or would like to be. That's probably why his calmer shopping that sitting on the floor surrounded by his toys. Those are old news. The world is a big place and he needs to see more of it!

And it seems like I'm always talking about all of those things: how amazed I am by him, how proud I am of him, how smart he is, and how everybody is predicting he'll be high functioning. Of course, that prognosis could change, but with so much struggle behind us, and so much struggle ahead of us, I happy for the good news and progress right now, even while I stand knee-deep in plenty of struggle, too.

Running Down a Dream

I have post on Dare to Dream this month.
This entry is about Mermaid's medical mayhem and how running a marathon made it easier.

Happily After

Last year Mermaid experienced hypsarrhythmia A.K.A. infantile spasms or seizures. In this season of gratitude, and as her second birthday approaches, I'm reflecting on that time in our lives. I am so grateful to be outside of that experience, looking back and knowing the conclusion. The uncertainty was crushing. Now doubt is merely the antagonist inevitably defeated by our happy ending.

We have so many "Befores," "Durings," and "Afters" in our days. "Durings" always seem so long, even when they're not. And "Befores" can be discouraging because we can never really go back to them. Even though we can never be sure what the "Afters" will bring, today I'm especially thankful for "After."


BEFORE: Happy Mermaid! So adorable. We didn't even know she had DS, let alone the shadow of seizures in her future.

DURING: The electrical brain chaos caused developmental pause and the steroid-like meds caused weight gain slowing her down even further; no smiles, no laughs, no interest and lots of sleeping.

AFTER: Mermaid began to wake up last December and here she is preparing for take-off in a helicopter aboard the U.S.S. New York. She is all toddler learning to walk, talk, sign and make-believe. She's curious and into everything. She pulls all books off the shelves and has started getting into the refrigerator. I don't even mind cleaning up. I am so thrilled that she is curious and happy.