World Down Syndrome Day is almost here!

Wow. 2010. It HAS been  long time since one of us posted. Well, we are getting geared up for World Down Syndrome Day. I guess it might have been a good idea to run local fundraiser and collect money for a Down syndrome foundation, but we just decided to focus on awareness. You can find out more about World Down Syndrome Day here. It is scheduled for March 21st (or 3/21) in recognition of the 3 copies of chromosome 21 that people with Down syndrome, also called Trisomy 21, have.  The t-shirts have The Boy's name and then "3:21", so it looks kind of like a scripture reference. Then on the back, we have the karyotype of the 3 copies of the 21st chromosome. I made one for everyone in the family. I also have one friend in Texas who will be making one, and I think a lot of people at my work will be bringing in t-shirts, too, so I can make them one. We just want to recognize our son and spread awareness of Trisomy 21. I'll be giving each person who gets a shirt a small list of talking points to address common misconceptions about T21. I hope we get a lot of curious people! Do you want to join in on the fun?

You've come a long way, not-so-much-of-a-baby-anymore!

The Boy is 2 years old today. (I have to admit that the helmet pictures is actually a couple of months old. Sorry. All the newer photos end up on Turtar's computer.) I'm not sure that I'm up for any deep reflections on the journey with my son over the last 3 years (counting pregnancy), but I'm so proud of him. He is a vital part of our family. He is very deliberate about including others in his activities. He goes out of his way to wave to others and say 'hi'. He is a solid walker, and loves music and dancing. He is just starting to learn so many signs and words. He hates being carried anywhere and doesn't even like holding my hand. He'll sit down if I try to hold his hand while he's walking so that I can control our direction. He loves telephones. He know just what to do with them, too: hold them to your face and walk around while you laugh. He loves a good joke. He pays attention to what gets a laugh, and will start his own applause for non-comedic achievements. He loves books and hates getting dressed. Its a very exciting time! He also loves bread, but doesn't care for cake, so this year we'll be celebrating with some pumpkin bread and homemade smoothies. (I recently discovered this is one of the few acceptable ways for feeding him fruit. McDonald's is good for something!)

Less is better for us

Every state or city provides different levels of support to it's children with special needs. I live in one that lays it on thick and then some, especially if your child has a diagnosis like Down syndrome. Mermaid has been receiving Physical therapy, Speech, Special Instruction, and Occupational Therapy each twice weekly for thirty minutes. I'll do the math for you = 32 x monthly (plus clean up, plus after-chat, plus delays, plus occasional no-shows without warning...). If we cancel a session for an outing, we have to make it up later increasing the amount of therapy on another day. Mermaid has four sessions in one day at these times. We're essentially tethered to the apartment.

Sure, her four siblings have had to sacrifice opportunities for field trips, classes, play dates, etc. We've all relinquished some flexibility for a good cause. Mermaid has progressed continuously. We love to welcome her wonderful therapists into our home. They counsel and encourage us. They have been willing to meet us at the homes of friends, at the playground, or at the park. They are constantly thinking of how to challenge Mermaid next. They are experts in their fields and really nice people, too. Seeking to balance all of this good stuff with the downside in a way that best fits our family's needs and allows Mermaid to experience the variety and wonder of the great wide world in person, we decided to cut back therapy by 75%. That's 8 visits monthly. We are an aberration in the system. Nobody downsizes when they are "entitled."

This quote from Ann Sullivan inspired me:

"Let him go and come freely, let him touch real things, and combine his impressions for himself, instead of sitting indoors at a little round table, while a sweet-voiced teacher suggests that he build a stone wall with his wooden blocks, or make a rainbow out of strips of coloured paper, or plant straw trees in bead flower-pots. Such teaching fills the mind with artificial associations that must be got rid of before the child can develop independent ideas out of actual experiences."

We've been on the "sleek" schedule since August and it has been fabulous! Mermaid continues to progress at a steady rate. Our language-rich climate at home coupled with increased "actual experiences," has allowed Mermaid to experience a language explosion. I believe hands-on experiences are the most significant for all of my children, but especially Mermaid. We've all enjoyed the freedom of getting out of town, out to visit family, out to the beach, out to playgroups, out... just out. New environments always motivate our curious Mermaid to develop skills or add new words. As a home schooling family, this works for us. Everyone has to calibrate their own definition of balance. Sometimes it's hard to get what you need. In our case, advocating for our child and our family means taking less of what is offered to have more of what we want.

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.)