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.)

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.

Yeah, it really has been a year.

11 specialists

6 weeks on oxygen

6 months in a helmet

4 days in the hospital

3 months on thickened fluids

1 surgery

1/2 million prods, pokes, doctor visits, and moments of worry

All of that put together can't dampen to the elation I feel when I hold him close with his soft, helmet-free and well-rounded head touching my skin. Or when he signs something so definitively I know for once exactly what he's thinking. Or when his whole face explodes into a smile because I walked into his line of sight. Or we laugh at each other laughing for 5 minutes straight.

Motivation

Mermaid is motivated by food. She was particularly non-compliant at a recent S.I. session held during the witching hour of 4-5pm. So, I pulled out a couple of marshmallows. I'm trying to get rid of this "red light food" anyway. Ms. SI held a marshmallow next to each cup she wanted stacked or peg she wanted put in place. When Mermaid did the task a marshmallow would instantly reward her action. Ms. SI was so excited about the response she declared she would bring treats every week to prompt Mermaid's behavior. She told me of research on Long Island where kids with Downs will hold tongue depressor's weighted with nickles between their lips to eliminate the socially unacceptable slack jaw. If the child continues for a certain time limit, he/she gets to keep the nickles. Is this another weird indignity my daughter will have to endure?

Now I'm in a quandary. I know Mermaid has a slow metabolism and an increased risk for obesity and diabetes. Pediatricians, dietitians and many psychologists agree that food should not be used as a reward. I acknowledge bribes as an occasional fact of life, but can I purposely use it as an ongoing behavior modification tool? I don't think so. I suggested grapes or slices of tomato as a reward compromise, but Ms. SI thinks goldfish and fruit snacks will be the best. They're certainly tidier. I'm putting a pin in it. In the meantime, I'll let Ms. SI use bribes during her weekly session but I won't. Well...I'll make an exception and use the remaining marshmallows to get Torpedo's into his button-up collared shirt on Sunday mornings! ;)

The Boy's Photo Journal

I was a fish in my other life.

What? Well, how do you sleep?!

Coastal gourmet.

I must be the treat.

All dressed up.

Too tired to eat.

Leaps and Bounds

The Boy is on fire. ON FIRE.

He is using the potty. Every time I put him on the potty, he makes something, and he waives 'bye-bye' when we flush. He rarely poops in his diaper. His diaper is often dry when I take him to use the bathroom.

He just cut his first tooth.
He is going to sleep on his own, instead of having to be rocked.
He is eating solid food in pieces, not just pureed (though he won't touch the wet foods... he'll only pick up the puffs himself).
And he just did his first sign.

Yes, that's right. His first word. And he really knows what it means. Ready for it? The Boy's first word is "all done". He used it first to say he was done eating. Then that he was done sitting by himself, and done laying down, and done eating again. Now that he's been using it for a couple of days, he just likes to play with the wrist movement, or maybe he just does it over and over again because it's his whole vocabulary so far.

When he 'said' it the first time, I thought I was going to implode, or spontaneously combust, or disintegrate or something. It just seemed like too much. Too much pride, too much joy, too much relief. I'm so crazy proud of my amazing, genius, twenty-wonder.

Company "d"

Company "d"

Posted using ShareThis

The Mystery Continues

The Boy (aka Captain Handsome Pants) has no food allergies whatsoever. Milk, wheat, gluten, cinnamon... he's not allergic to any of it. So... uh, um... I'm not really sure where to go from here.

I'm switching body wash. That's done. Maybe that's what caused the rash all along. But this is about more than just the rash now. When I went off dairy, I noticed an increase in my energy levels, and a bizarre side-affect with my hormones (who ever heard of a 7 day cycle?). So, I'm not that anxious to dive back into dairy land, and any milk I do have from here on out will probably be organic (or at least hormone-free). And when I went off gluten (much harder than going dairy-free), it only took a couple of days to see an improvement in The Boy. He was smiley again. I mean, smiling at every glance and word. Happy. Not just quiet. And for the first time in months and months and months (like 6 months), he was pooping on his own. Hurray! Then the Celiac test came back negative, so I went back on bread, and he was plugged up within a day or two. *sigh* Thank goodness for my awesome infant massage skills. I have put them to good use. Back off gluten again, and The Boy is moving things like a pro.

So what's next? I'm still pursuing things with the allergist to figure out the rash (namely the chemicals from the body wash I was using). And she said that The Boy could have an intolerance to gluten, though not an allergy in the academic/clinical sense of the word. What the heck does that mean? I think I need to find a GI.

In good news, The Boy is using the potty already. He has needed so much help with his bowels, he's not in the habit of going with his diaper on. His OT said I should start putting him on the potty when I could tell he needed to go, and it's paid off. He's even started peeing on the potty, too. He still wets his diapers, but almost anytime I put him on the potty, he makes something. Then I let him watch it flush down while we waive 'bye'. It feels pretty darn good to be advanced on something.

Mermaid gets her legs

Two weeks ago Mermaid took her first unassisted steps. There were at least four witnesses screaming excitedly for me to turn around. I missed it, twice! She spent the next ten days asserting her independence by lying on her back. Now we are practicing walking like two dancers. We face each other and hold one hand. Mermaid is skeptical of this arrangement and frequently holds her ground waiting for my other hand or she lunges forward for a body hold. Still, Mermaid is a natural leader pushing me backwards all around the apartment. It's fun to see where she wants to go.

The physical therapist has been telling me for months, "She'll be walking soon." I can't get too hung up on that kind of language. Progress moves a half step forward and a quarter step back. I trust that she'll get there in her own good time. I should give myself and my other kids that same kind of leeway. Meanwhile, Mermaid crawls like she's swimming. I think she's growing up too fast and My Hero is grateful to have a child who is mile-stoning at a rate that he can track. What's next? Flying?!

Gluten Schmuten

I know. He's so darling. The bib says "I am a Joy to the World", and the bloomers say "I made a Joyful noise". He got them for Christmas, but they didn't fit, then, and I figured it would be more fun to wait until he could sit up for a photo op. And the robot stuffed 'animal' in the background is the one I made for him.

He has food on his face in this one, but the food isn't red. That is his rash after over a week off of dairy. It has not made a dent. In fact, the rash is really bad around his eyes and has even gotten worse. The allergy test came back negative, which doesn't mean he isn't allergic to milk (or the other half-dozen things for which they tested), but may just mean he's too young to tell by testing. The real test is experience, and in my experience over the past week, going off dairy hasn't changed anything for him. I'm staying dairy-free until we resolve this, but I don't think that's the problem.

I've been doing some reading and I'm feeling more and more confident he has Celiacs Disease. Here's why: The Boy is generally constipated. For months now, I've been massaging his belly to help him empty his bowels. It's rare to have a surprise in his diaper. He's been eating less and less lately, almost measurable by the day. His mood is different. He used to smile at everyone who gave him the time of day. He is still a calm child, but he doesn't seem as happy as he used to be. He puked all over my hair and down my shirt the other day (during a special pre-op prayer for Turtar, as luck would have it). He has this horrible rash (as you can see). I thought it looked a little zitty, but as I started reading about Celiacs, I read the term 'blistering rash' and immediately recognized that was a better description for what he has. And get this: there is a link between Celiacs and chromosome 6. So my criss-crossed, translocated chromosomes have impeded my baby once again. The translocation in my family that causes our miscarriages and increases our chances for Trisomy 21 is between chromosomes 6 and 21. 6 and 21. I'm sold. I took The Boy in today to be screened for Celiacs (or gluten intolerance). We won't have the results for a week, but I don't want to wait that long to see an improvement in my son. I read that it wasn't good to go gluten-free before the screening test, but now that we've done it, I'm off it all!

Thank goodness for hummus. And almond crackers. And quinoa pasta. and Gerber Graduates apple wagon wheels Finger Foods, which are now the only finger food the boy can have at all. Until maybe I make a trip to Earth Fare.

I never liked gluten anyway. Cookies are completely over-rated.

Adventures in Dairy-free

{The Scene: The Boy's 9 month check-up}

DR. PEDIATRICIAN:

Great. Well, you can go ahead and start giving The Boy yogurt and cheese, everything but straight milk as far as dairy goes.

{4-5 days and a couple of YoBaby products later, enter one nasty, zitty, rash around nose, mouth, eyes, chest. The Scene: Home}

ME: Oh, my poor baby! We will put an end to the products of YoBaby and this horrible affliction will abandon you.

{3 weeks later, the horrible affliction has not abandoned The Boy. The Scene: Pediatrician's office}

ME: Dr. Pediatrician, I don't know what to do! This horrible affliction will not abandon my baby, though we have not partaken of any yogurt for weeks. His breathing is sometimes heavy, his nose clearly has the itch and just this morning he sneezed about 7 times in a row. What can we do?

DR. PEDIATRICIAN: We will do a test. Please take your poor, and already suffering baby to receive much pain as we extract his bodily fluid from his very veins. Also, use this prescription creme in conjunction with hydrocortisone on the horrible rash. Also, stop all dairy of all kinds for two weeks to see if it helps... you know, just in case. And you, too, since you're still breast-feeding.

ME: Oh, okay. *sigh*

{Later that night. The Scene: Home}

THE HUSBAND: What shall we have for dinner tonight?

ME: You and the girl may have cheese omelets. You and the girl may have macaroni and cheese. You and the girl may have sherbet and pudding and chocolate chips, though you probably wouldn't want to mix them all together. You and the girl may have anything you want. I will have dry froot loops. The boy will have actual fruit, albeit pureed. The boy will no longer have any finger foods as they all contain milk, at least milk whey. *sigh* And maybe the horrible affliction will finally abandon my poor baby.

Cute Pills

Must be Saturday because I'm at the beach snuggling with my Mermaid.

Annual return to the place I told My Hero we were expecting Mermaid.  

First rock climbing.  She gets that from her Dad.

Just SO cute!  She gets that from her Dad, too.

Didn't get anything at the Americana sale, but Mermaid will be back for jewelry. ;)

Christmas with P.T.  We love our physio-ball


First Brownie!

First dirt. (I think she liked the dirt better!)
Pre-Barium enema.  She was fine, but we got slammed in the pocket book.

Mermaid has definitely been sneaking in some cute pills. She just keeps getting cuter every day.. and she's more of a pill, too! She's not walking solo, but if she can grab your hands she'll take off "running." If there is something she wants to do, she does it quickly. This includes flipping over during diaper changes, combat crawling towards a marble, snatching up finger foods, grabbing a bowl of soup and getting fistfuls of sibling hair. She's quick to see and surprised the opthalmologist by having completely typical healthy eyes. Most of all, Mermaid is quick to smile.

Recently diagnosed with "moderate to mild hearing loss in at least one ear," she may be slow to hear. I'm not rushing to tubes, though. My instinct, my speech therapist and my neighbor who oversees the baby hearing tests at another hospital all indicate waiting. Mermaid has never had an earache and she recently added "M" to her babbulary. I'll take some intermediate steps (some spiritual, some more conventional) before her next test in August.

The family is doing well. Keeping our homeschool on track during daytime speech therapy and making time for afternoon fun around all the other therapists is a challenge. Everyone seems to be surviving, but I'd love to find something special for the oldest kids like a weekly theatre group. Torpedo loves the therapists and always steals the cool toys, so he doesn't need an alternative activity, yet. I still haven't joined a support group, but may be convinced after Plainbellied claimed her support group helps with babysitting during doctors appointments. What a luxury! I feel less frustrated when Mermaid plateaus and it's never long before she's off and "running."

(pictures loaded out of chronological order, but are all from the past 6 months)