Christmas

Nathan had the flu the week before Christmas and still was not 100 percent himself in time for the holiday. Maybe that partly explains his lack of enthusiasm this year. Perhaps in a couple of years I'll have at least one child who experiences a high level of excitement about Christmas-- and then I'll probably look back longingly at these Christmases with a child who doesn't really want much and would have been happy if his stocking filled with five dollars worth of puffy balls and a slinky from the dollar bins at Target were all he received.


Nathan is generally happy with what he has. He did get some new toys, though, and is very enthusiastic about a new Leapfrog toy he got from grandparents. In fact, more grandparents have gotten him more Leapfrog toys, which I'm sure he will also love, but he hasn't gotten around to opening them yet, being happy with the one he's got. He'll get there, and heck, maybe some of his Christmas toys will still be new and exciting in mid-January when his sister arrives and his parents are exhausted and busy and happy to have him entertained. Christmas will just last a little longer around here.

My shining star

Sometimes people just don't get it. Sometimes people look from the outside at parenting a child with special needs and think he must be a burden, it must be so hard. They see what my child isn't doing yet. They see the disability. Someone recently said to me that it must be like caring for an elderly person. Now, I've never cared for an elderly person but I've got to think it's very different from my experience parenting Nathan! When someone is losing skills, abilities and independence such that he now requires care when previously he did everything for himself (and perhaps took care of others), there is bound to be a lot of understandable anger and frustration. Perhaps there are some joys and closeness to be found in this kind of caregiving situation, but I've got to imagine that for the most part it is really hard on both the caregiver and the one who needs the care.

Raising a Nathan is different, though. He gains skills and abilities, although on his own timeline. Sometimes I am reminded of the things he's not doing yet (emphasis on the yet), but more often I focus on the skills and abilities that are emerging. When we purposely decided to become parents, we pretty much signed ourselves up for some years of caregiving, so having a little person depend upon me for his needs was not entirely unexpected. Sure, he will need more help and for a longer time frame, but I really don't think of this as caregiving for a person with a disability; I think of it as parenting my child. And while there are challenges, overall it's fun. Nathan is cute. He's silly. He makes me laugh every day. He's sweet. He's snuggly. I feel so blessed to be his mom, so lucky to have him in my life, and I don't know how to explain that feeling to somebody who looks at him and sees disability and need. That person doesn't see what I see, doesn't feel what I feel. Sometimes I wonder whether I'll really be able to love my next child as much, as strongly, as powerfully. Of course, I'm sure I will; it's hard to imagine now in this time before she's born because I don't know her yet, but I'm sure that once she arrives I will fall in love all over again. It's part of being a mom. Not a special needs mom, not a supermom, just part of what it means to be a parent, and a huge part of why anybody does this more than once (really, it's not that we enjoy smelling like spitup or changing diapers).

I'm going to close with a Dan Zanes song that hapens to be a favorite of Nathan's, and one that describes the way I feel about him. I don't know who the song was written for; I'm guessing Dan's daughter Anna, who does not to the best of my knowledge have any sort of disability. Sometimes loving your kid is just about loving your kid.

Shining Star
lyrics by Dan Zanes

you can take a nickel turn it to a dime
you can turn my face into a smile anytime

you're a shining star day and night
you're a shining star in my heart all right

you sing just like a robin you walk the way you dance
you glitter like the beaches on the south of france

you're shining star day and night
you're a shining star with a golden light

yodel-odle-lay-hee
yodel-lay-hee-hoo

you can have me laughing the way that no one can
you can bury me up to my neck in sand

you're shining star when you smile
you're a shining star you can shine for miles

yodel-odle-lay-hee
yodel-lay-hee-hoo

just in case you wonder just in case you care
anytime you need a friend i'll be there

shining star day and night
you're a shining star in my heart all right

yodel-odle-lay-hee
yodel-lay-hee-hoo
yodel-odle-lay-hee
yodel-lay-hee-hoo

Pancake Breakfast

On Saturday, some friends and I from the Yolo Community Network (and really Becky and her family in particular!) together with the Down Syndrome Information Alliance put on a pancake breakfast for families in our Down Syndrome community. We've done smaller get-togethers, potlucks, playdates, a holiday party last year for about 35 people, but nothing on this scale. We had about 180 people RSVP plus 15-20 volunteers to help. I have to admit, some of us were a little anxious about how things would go. Despite some glitches along the way, it was a great success and a lot of fun.

Landon

Marcus

Noah

This was not a fund-raiser as most pancake breakfasts are. The idea was to have a get-together for the whole family with food, crafts, games and Santa, see old friends and meet new ones. I overheard one mom say, as her child was behaving in a way that was not consistent with what she'd wanted, "At least here everybody understands". Yes! That is a huge part of the point of getting together like this-- if your child has texture issues and won't put a pancake in her mouth, you will be around people who "get it". If your child has some sensory issues, clings (as mine did for a while), makes unusual noises, fears Santa, whatever, you will be in a whole room full of people who understand that and don't bat an eyelash. That's one of the nice things about getting together like this.

Sadly, we didn't have a working microphone, so I didn't get the opportunity to thank everybody publicly at the event. I really want to thank the Crews family for planning and cooking, Danielle Bobadilla for helping out with eggs, Jennifer Enriquez for the crafts, Magpie Catering for the sausages, the Collings West Sacramento Teen Center for donating the space, and the wonderful volunteers from the pre-med/pre-vet fraternity and from Kaiser, as well as Heather Green, Lisa Lindsey and DSIA for sponsoring and advertising the event as well as recruiting the volunteers! A huge thanks to pastor Douglas Zeck of the New Testament Church in Woodland (AKA Marcus' grandpa) for playing Santa (he'd be the Caucasian Santa pictured above), and to Ricky Mayfield for filling in when a family missed the announcement that Santa was wrapping up (he'd be the African American Santa pictured above).

So, now that we've gotten through the first annual pancake breakfast, I'm ready to start thinking about the second one!

My newly impassioned cat

Perhaps you've read my last 2 posts, about cats and about "Roll Away Your Stone". Now, Nathan has combined them.

Boy, does he get stuck on a topic! Cats are always a favorite, and substituting the word "cat" for other words is always a fun game. He was really wanting me to sing "You Are My Catshine", pretty much constantly, substituting the word cat for any handy noun, regardless of whether the result makes any sense. "You told me once, cat", he'd ask, wanting that third verse over and over, and finding the line "you have shattered all my cats" especially funny.

Then the cats got forgotten for a minute. Nathan became obsessed with the Mumford and Sons song "Roll Away Your Stone". He sang it in his sleep and woke up singing it. He asked for it all day long. I was actually kind of happy about the change of focus. It wasn't about cats. And it gave me something new to do; I got to learn the lyrics to a new song. That was all fine until "Roll Away Your Cat" happened. The new fun thing around here is to substitute the word cat for a heck of a lot of words to "Roll Away Your Stone". "And sooooo I'll be found/ with my cat stuck in the ground/ marking the territory of/ my newly impassioned caaaaaaat". Or, in Nathan's terms, "new passion passion caaaaat". Yes, indeed, the enthusiasm for all things cat is newly impassioned. *Sigh*

Dancing

Nathan has a couple of new favorite songs form the alternative rock station, including Mumford and Sons "Roll Away Your Stone". He seems to think that the line "darkness is a harsh term, don't you think?" is "Darcie is a horse" (his physical therapist is named Darsie, but she is not a horse). He really likes the fast bits and will request this song by asking for "dancing!" Here is some video taken this morning of Nathan dancing to Mumford and sons:

Cat Quesadilla

Nathan likes to make jokes, generally speaking the same jokes over and over again.

His current favorite I think started with or was perpetuated by his Auntie Lisa. Nathan was saying "cat soup" for some reason and that led to other cat menu items, such as "cat sandwich" and "cat omelet". Nathan now finds it hilarious to make up cat entrees, baked goods, and desserts. He keeps repeating "cat quesadilla!", and in fact sometimes wakes up saying it. I made the giant mistake of encouraging him to given candy another try this Halloween and now he's discovered he likes chocolate. He was saying "cat candy!" this morning.

Cat food (that is to say food for cats rather than food made of cats) is also a subject of much hilarity. Nathan has written new lyrics to Bob Marley's "No Woman No Cry" on the subject: "No Nathan no cat food!", and has also given equal time to lyrics forbidding the cat from eating the people food: "No Moosis no chicken!". Substituting different words in familiar songs is another popular form of Nathan joke.

I love his sense of humor, even when the jokes get a little old. "Cat quesadilla" at 5am, anyone?

"Kick the ball to Naynan"

It's 6am. I'm making coffee. Nathan comes into the kitchen, carrying a rubber ball. "Kick the ball to Naynan!" he sings. As I am encouraging him to kick a ball in the kitchen before I've even had my coffee, I think to myself that there are probably other parents, perhaps even within a square mile of me, who would not be encouraging this, and who perhaps have a rule about no balls in the house, nevermind the kitchen. After all, some 4-year-olds don't have IEP goals about kicking that they've been working on for the past 2 years. Some 4-year-olds can, in fact, kick a ball really hard, in a way that is not appropriate in anyone's kitchen. Kicking has been hard for Nathan, though, and I'm excited he wants to initiate a short, impromptu indoor soccer game. I'm also excited about his use of language to initiate the game. I'm excited about a whole lot of things that might just be seriously annoying if another 4-year-old did them in another kitchen at 6am. It's a special needs mommy moment, a moment of pride in my child's small gains, and of being content in the moment with my child.

"Kick the ball to Froggy!" says Nathan. He leaves, returns with his singing stuffed frog. He can't quite seem to figure out this part of the game, though-- he's got the frog but can't seem to decide how to kick the ball to him. I demonstrate Froggy kicking the ball to Nathan, but Nathan decides just to play with the frog. Game over. We try it again later in the day when Nathan again tells me "Kick the ball to Froggy!", but he still seems equally perplexed about how this is is supposed to work. Perhaps he'd like the frog to kick independently. Stuffed frogs are not Nathans, though; no matter how many times we demonstrate kicking, the frog will not learn it. Nathan, on the other hand, is getting there. It takes time, and patience, and a willingness to encourage him when he is ready (even if that happens to be 6am) but he's getting there.

Step Up for Down Syndrome

Yesterday we did the annual Step Up for Down Syndrome walk. We had beautiful weather, great friends, music, and food. What more could we ask for? Oh, yeah, and we raised money and awareness for the Down Syndrome Information Alliance.
Here we are with Jennifer, Carlos and Joaquin who join us every year for this event:

This year we walked as the Yolo Community Network team. Uvaldo designed our YCN T-shirts with the "21" logo for trisomy 21, and Danielle had a banner made:

Nathan walked just over half the way


before finishing the walk in comfort (well, comfort for some).

We enjoyed a picnic lunch provided by the California Correctional Peace Officers Association:

I later learned we should really limit Nathan's hotdog intake... too many hotdogs is no bueno later. All in all, though, a fun day.

Large Cats

Nathan has so many things memorized. If you didn't know some of these sentences were memorized, and if you could clearly understand what he's saying, you might be pretty impressed with some of the things that come out of his mouth: "Sheep have long, woolly coats.", "Cats have soft fur.", etc. I often wonder what is memorization and what he really understands. I am sure he knows what fur is. Does he understand what wool is? What a sheep's coat is?

This morning we were reciting the book "Panda Bear, Panda Bear, What Do You See?" Nathan can name all the animals in the book, from memory, without benefit of having the book in front of us or looking at the pictures: panda bear, bald eagle, water buffalo, spider monkey, black panther, etc etc. Nathan said "Black panther, meow", as he often does. This makes sense because when you look at the illustration in the book, the black panther looks an awful lot like our black cats. I told him (as I have before) that black panthers don't say "meow". I told him that black panthers are large cats, like tigers, they snarl and growl. "Lion," says Nathan. And then "leopard." Aha! He is demonstrating knowledge of what constitutes a large cat! This is not something we've memorized. We have not studied lists of large cats. This is understanding a category of animal! How cool is that?! "Yes!" I said, "Lions and leopards are large cats! Like black panthers and tigers". I snarled and growled a bit, although I'm frankly uncertain as to quite what a leopard says. I faked it.

And then, a moment later Nathan piped in "Jersey cows". Well, no...

October!

It's more than a week into Down Syndrome Awareness month and I haven't even written a bog post yet! Time to remedy that!

It's October, time for Fall fun, pumpkin patches, and of course the Step Up for Down Syndrome walk.

We made a pumpkin patch visit Friday with friends. The pumpkin patch was crowded and Nathan was initially cranky, and I was starting to fear the whole thing had been a bad idea. And then we took a train ride.

Post-train, we enjoyed pumpkin muffins, followed by lunch. And then we did the train again. We went to see the giant pumpkins and give them some love.

And we came home with a couple of (smaller) pumpkins.

The Step Up walk is 2 weeks from today. If you're local and would like to join us, we'd love to have you come walk with us! Click here to join our team!

And if you'd like to sponsor Nathan and support the Down Syndrome Information Alliance, click here. The DSIA does all kinds of cool classes, programs and events in our community to support and educate individuals with Down Syndrome and their families.

It's a... piglet?

I've been talking with Nathan about the baby-in-tummy.

If I ask him what's in mommy's tummy, he had been telling me "Cat. Meow."

Today, I asked him again. "What's in mommy's tummy?".
"Tummy", said Nathan.
"Yes, but what's inside mommy's tummy?"
"Baby pig," said Nathan.
"No, not a baby pig! A baby sister. A baby sister is a little person."
"Little-ittle-ittle person".
"Right, a person. Like you. Baby sister. So, what's in Mommy's tummy?"
"Baby pig".
I asked him again a bit later, and got the same response, "Baby pig". He also lifted up his shirt and touched his own tummy. I told him there was nothing in his tummy but yogurt.
"Mmmm, yogurt. I want". And the discussion of babies was pretty much done.

A colleague pointed out that no matter how much we might try to talk about this issue and prepare Nathan, no child is going to be totally prepared for the reality of this baby coming home and staying. Thinking back, even though I was a grown-up and knew a fair amount about what I was getting into, I did not really understand the reality of having a baby at home until I had one. How could I possibly expect Nathan to? We'll keep talking about it, but it will really sink in come January when this baby comes home... and doesn't leave. And won't he be surprised when it's a baby human, not a cat or a piglet... or yogurt.

Fork

Nathan did a great job eating his applesauce neatly with a spoon at lunch. He looked up at me. "Peaches?" You want applesauce and peaches? Well, okay, but you've got to eat the peaches with a fork.

Success!
"Fork", says Nathan, beaming.

Cabeza, Hombros Rodillas y Pies

Here's a short video we made this morning while waiting for the school bus. This is "head, shoulders, knees and toes" (well, head, shoulder, knees and feet, actually, but that's how we learned it) in Spanish.


Sorry it is so dark! It didn't look so bad on the camera. But you can hear us fine.

Soccer!

Today was Nathan's first day at VIP Soccer. This is a really neat program where kids with disabilities are paired with buddies and can work on soccer skills at their ability level. Nathan did initially kick a ball around before retiring to the grass to sit, climb on daddy, ponder the leaves, and occasionally hug a tree.



He got back into the swing of things at the end, though. Hoping that with time he adjusts and begins to spend a bit more time playing.

Brave Nathan

Nathan's had a couple more recent successes in terms of being brave and trying things that are scary for him.

With his life jacket, he's been able to get more comfortable in the water, and even let go of me briefly sometimes. He actually even climbed into the deep end himself at one point!

He also braved the bouncy house at a birthday party today. Twice!

Go, Nathan!

Those challenging moments

I don't always post about those challenging special needs parenting moments because focusing on strengths and successes feels better. Sometimes, though, there are moments when I remember that my child really is different, and it shows.

This past weekend, we went to Little Buckaroos Day at the Crocker Art Museum. First, we parked in a garage and had to take the elevator down. Nathan was loud and becoming tearful. A family got in, and I explained to them that Nathan is a bit afraid of elevators. The little boy, about kindergarten age, just laughed, as though he could not imagine anything funnier than being afraid of elevators. It was a short ride, though, and then we were off to the museum. We met up with friends, attended a puppet show (quietly and attentively!), and watched a vaquero display his whip and lasso skills. Nathan soaked himself a bit in the fountain and generally had a good time.

After our friends had gone home, Nathan and I checked out the petting zoo. Nathan was willing to touch one very tame and lethargic baby goat (the temperature was in the 90s and the poor animals had been there for hours; they were not too perky or animated by that point). Then he started to appear scared, got loud and wanted out of the petting zoo. The vaquero guy was back, doing more rope tricks. He was twirling his lasso around each child in turn so parents could snap a photo. Nathan was very interested. The guy asked me if he could lasso Nathan. I told him he could try but it might not last long. I didn't get a photo, it was indeed brief and my camera is broken anyhow. Nathan grabbed at the rope, and the lassoing was over. Nathan then began to growl loudly, in short bursts, maybe every 10-15 seconds. This continued. And continued. It attracted pretty much everybody's attention. Nothing I did or said by way of comfort or distraction seemed to deter Nathan from the behavior. We were having a moment. I was thinking to myself "Jeez, kid. Could you possibly advertise your special needs any more loudly and clearly?". I didn't think he was hurt or overly scared. He didn't seem to need comfort or anything else from me. Some nice bystanders tried to normalize the behavior, saying maybe he was emulating the dinosaurs from the puppet show. I really think he was just overstimulated and I was a bit at a loss as to what to do with this going on rather loudly and obtrusively in public.

We had a moment. I know my kid is different. I know not to take his behavior personally, as a reflection on me as a mom. I know that "typical" kids also have moments and that this is part of parenting. And mostly I am good with the idea that Nathan is Nathan; he's different but he's a great kid. He's sweet. He's funny. We have fun together. But sometimes these moments just hit me and I'd like him to act more "normal", more socially appropriate, more like other kids his age. (Just pet the damn baby farm animals!)

Earlier I'd seen a family with 2 children, one of whom uses a wheelchair and looks to have some delays. I'd smiled at them. Now with Nathan growling up a storm, they made their way over and introduced themselves to me. I have now unfortunately forgotten their names, but I will not forget the kindness and solidarity, coming to stand beside me in my my-kid-is-different moment.

As I talked with this mom, a little girl named Lilliana, perhaps 3 years old, was busily trying to make friends with Nathan. As he stood growling and turning away from her, she kept saying hi and trying to engage him. She was not deterred by his behavior, and told me he is "my growly friend".

Nathan of course was going to tire of this growling behavior and move on to something else at some point, and he wasn't the one who was bothered by the growling or the reaction anyhow. It was my moment. And I was helped through it by the kindness of an empathic family. And by Lilliana, trying her best to make friends, undeterred. I wish Nathan had been more responsive to her, and I hope that when he is ready to make friends and interact more with other kids there will be a Lilliana waiting. The Lillianas of the world bring me hope.

Pulling up

We started meeting with a behaviorist last week. The focus is on self-help skills, and the main goal is potty training. Since Nathan is not displaying some of the signs of potty-readiness, such as "able to pull his own pants up and down" and "indicates when he needs to go", we've got a lot of work to do. We're really still in the assessment phase with the behaviorist. She will meet with us a few times, with me gathering data in between the sessions, and then has to write up an report and get approval to begin regular sessions. Since this is being funded by Regional Center and they have to approve it, it could take a couple months before we really get started.

BUT after the first session we've already made a little progress. Nathan has demonstrated that he CAN pull his own pants up and down at least partially, he was basically just choosing not to because, hey, isn't it easier to let mom do it? Now that we've established that he CAN, we're transitioning from diapers to pull-ups, to facilitate that independence, and we'll be working on getting him to do what he can do. He can get the pull-ups off with minimal assistance. And once they are around his ankles, he can pull them up... in the front. Since having the rear covered is key... well, as I said, we've got some work to do.

"NOT okay"

Yesterday morning, I said to Nathan "Mommy's going to take a shower now. Nathan plays. Okay?" Why did I ask if it was okay? I really don't need the 4-year-old's permission to bathe! I know better than to put something in the form of a question when it's a statement. I guess I just was not expecting an answer!
Nathan: "Not okay. NOT okay!"
Me: "Is there something else you wanted mommy to do right now?"
Nathan: "Kiss!"
Nathan got his kiss, and then I turned music on for him and took a shower. I guess I've got to pay a little more attention to my wording...

Playing together

I was saying the other day that when Nathan is with other children, he does probably 90-95% parallel play; he doesn't play with them, he plays near them. He engages well with adults, especially favorite adults, but I've wondered when he might translate some of this interest, enthusiasm and energy into actually playing with his peers.
Yesterday, we visited his buddy Marcus. Nathan and Marcus are the same age and both have Down Syndrome. Unlike some kids, Marcus doesn't intimidate Nathan, even though Marcus can do some things Nathan can't do yet (Marcus has got some gross motor skills on him!). I would say it's reciprocal, Nathan just has different strengths, and they balance out. We went in the pool, and Nathan was much more afraid than Marcus, who can swim independently with his floaties. Nathan warmed up more with time and was able to float in his life vest and thrash around a bit, holding my hands. He was even able to let go of me with one hand. After swimming, the boys had a snack and went inside the house. They initiated a game of throwing a pillow back and forth and giggle hysterically. This was so amazing to see: they were playing together!





Nathan loves to play "catch", but in the past I have only ever experienced him throwing to adults, even if directed to throw to a peer. Yesterday, these guys initiated this game on their own and threw this pillow back and forth to each other, over each other, and onto the floor, giggling hysterically the entire time. I was pretty much superfluous, and was able to take pictures and talk to Marcus' mom. We probably could have left them to it, but of course we were so excited to see them play together we had to watch (and document), and giggle too-- their laughter was pretty contagious.

Let him eat cake! And other small successes.

You know you're the parent of a special needs child when you find that you are beside yourself with pride when your 4-year-old eats cake. With a fork.

This has been a week of great little successes. On Sunday, Nathan and I went to the public pool.

Last year, he would only stay in the shallow part of this zero-entry pool. He was very happy to play in a foot or less of water and very scared to go deeper. On Sunday, holding both my hands, he walked into the water up to his neck. He needed both hands on mine or on the wall most of the time, but briefly let go a couple times. So brave! I do not have photos of this; my hands were busy and I didn't want to bring the camera into the water, so you'll have to take my word for it.

On Monday evening, we went to Kayla's birthday party at Bounce U. Perhaps you've read my previous posts on Nathan and birthday parties, especially indoor ones. I knew that this could be really challenging for him. When we arrived, he was clingy and scared. The room was really loud, and the noise of bounce houses (that blowing air noise) always gets to him. I went into the bounce house with him. After maybe 10 or 15 minutes of sitting on my lap clinging on for dear life, Nathan relaxed, played with a ball, and let me detach from him to go get the ball. He was not ready to stand up in the bounce house, but enjoyed the vibrations and playing with the ball.

In the next room, he was able to play independently and dance around. He was comfortable. He was happy. He was fine. I decided to back away, talk with some friends, and let him be independent.

Then we moved on to ice cream, cake and "Happy Birthday". Nathan initially spit out his milk and pushed the ice cream away. This is nothing new. I've never known him to eat the cake and ice cream at a birthday party. However, after a few tries he decided he liked the ice cream, and ate it himself, with the spoon. He has never had a plastic spoon before and due to his technique of biting the food off, he went through 3 spoons. But he ate all the ice cream. I put a bite of cake in his mouth and to my surprise he did not spit it out. A few more bites made it in, and then I decided to put cake on his fork and let him do it himself. Nathan doesn't use a fork at home at all, but he does at school, with help (there are reasons I asked for this to be an IEP goal!). After that success, he was ready for full cake independence. His technique involved mashing the cake to make it stick to the fork, but he persevered, down to the end when he popped the last bite in his mouth with his fingers.

With all this bravery and adventurousness going on, today I decided to be brave and take Nathan to his first movie in a theater, by myself. Jeez, I'd hate to pay over 20 bucks for the 3 of us to go see something as a family, only to find that Nathan can't tolerate a dark, crowded theater and we have to leave. So when I saw that the theater here in town is doing matinees of old kids movies for a buck, I figured this was a good opportunity to try it out. I figured that if we had to leave after 10 minutes, I would only be out 2 bucks (that's really and truly all I spent, because I snuck in my own snacks. Nathan doesn't know that Cheerios and raisins are not the traditional movie fare.). Nathan was, as I expected, rather loud and clingy in the lobby, but he was able to stay for the entire showing of "Wallace and Gromit: The Curse of the Were-Rabit" without getting too loud or overly antsy, so I'm calling it a success, and we'll likely go back next week to see "Jimmy Neutron" for a buck.

Ah, I love celebrating all the little successes!

Denmark, Drugs and Down Syndrome

After writing my recent post about my decisions on testing I read this article about a widespread program of testing in Denmark. Denmark now has a program of free and readily available prenatal testing. The number of babies born with Down Syndrome in that country initially dropped by half and then has declined by 13% per year. Tests do not, of course, prevent or cure Down Syndrome. Tests simply make it possible to identify and terminate affected fetuses. In the US and UK, the rate of termination following a positive diagnosis of Down Syndrome is 90-92%. In Denmark it's even higher. The idea of a social policy designed and implemented to eliminate kids like mine makes me sad. It is impossible for me to think about this issue without personalizing it. It is impossible to separate public and medical policy from the reality that these policies are designed to eliminate and prevent children like Nathan from being in the world. For the record, I believe that Nathan is better off alive than dead, and my family is better off with him in it. I also would prefer to live in a society that includes and values all members rather than one that seeks to eliminate whole categories of people.

I then read this article in the New York Times Magazine, "A Drug For Down Syndrome". Among the issues raised in this article is the idea that there is not much funding for Down Syndrome research, as compared to disorders such as cystic fibrosis, possibly because if prenatal testing can take care of the problem, there's no need to invest resources in research. It seems as though the scientific and medical community has spoken about the value of these lives, by investing resources in "prevention" rather than intervention.

It seems to me as though parents of children with Down Syndrome could band together, raise funds, push for more funding for research. Why doesn't this happen? We band together to raise funds for support programs and awareness much more than for research. Some parents are quite vocal in their concerns about drugs for Down Syndrome having the potential to change their kids in negative ways. Some parents also feel that we need to accept and love our kids the just as they are rather than trying to change them.

I think that on balance, a drug that could enhance learning and memory and allow people with Down Syndrome to function more independently in their communities would be a good thing.

I understand the concerns about possible side effects or negative changes on personality or behavior. And I also worry that the emphasis on being "high functioning" detracts from the important message that all of us are good enough the way we are, we all have strengths and challenges, and we all need to be included. Dr. Costa, the researcher and father profiled in the New York Times article tells the journalist about his daughter's academic strengths, including the fact that she is one of only 2 people with Down Syndrome that he knows of who can do algebra. “If Tyche were really severely affected, I don’t know if I would have had the energy to go on with this business.” He does go on to describe positive feelings for all the adults in his study, regardless of intellectual level, but it's clear that his emphasis is on being high-functioning.

Where does this leave individuals with Down Syndrome who do not do as well on various measures of cognitive ability? Where does it leave their families? Envious and hoping for a drug? Wondering if there was something they did or didn't do (if only we'd started speech therapy earlier, tried vitamin therapy, pushed harder, etc. etc....)? Our kids all have different strengths and challenges, and I don't like valuing some above others. It feels like it parallels the "typical" world that doesn't value our kids because they aren't as high functioning as others.

I feel conflicted, both wanting to see increased funding for research that leads to developments to improve the lives of people with Down Syndrome, and wanting to say people with Down Syndrome are okay as they are. My child is wonderful as he is. Yes, I am willing to take steps to help him to succeed and be more independent. Yes, we'd be willing to try a medication to enhance cognitive functioning for Nathan. However, I also want to embrace him as he is, appreciate what he is doing, celebrate the successes he has. I suppose that as with any child, we love him as he is, but do want to see him grow and develop, and would be willing to try a product that is shown to help with this if the benefits outweighed the risks. I think funding this research is important. Clearly, as the Denmark situation shows us, there is a need for increased awareness too. The challenge for us as parents will be figuring out how to push for both.

"My plate" -- implementing the new food "pyramid"

Perhaps you've seen the new USDA "My plate" food recommendations that replace the food pyramid. If not, here is a link. The idea is that half the plate is fruit and veggies. Sounds like a good thing in general. Anybody having trouble applying this recommendation to their kids' plates, though? Or to put it another way, is anybody not?

Nathan eats exactly one fresh fruit, oranges. He will eat raisins, any fruit freeze-dried, and a few canned fruits. He will eat strawberries pureed and mixed in his yogurt, but forget about giving him a strawberry. If he's feeling nice he'll hand it back instead of throwing it. Also, I have learned that cutting up a fresh peach into little cubes does not fool him into thinking it is a canned peach, even if I add a little sugar. Nathan eats two vegetables: green beans and asparagus. I've had a little success with leafy greens while singing Mock Orange's Holiday Dinner Song which includes the line "Rice and beans, leafy greens!", but this is hit or miss (more miss than hit).
He does drink V8, the low-sodium tomato kind (I have not bothered with the partly-fruit-juice kind since he will drink the other), so I should really count my blessings there.

Today at lunch I gave him a piece of toast with cheese, half and orange, and a glass of V8. Seems like roughly half fruits and veggies there. He finished and said "peaches?" I got him some freeze-dried peaches. "'Sparagus?" Me: "I'm sorry, we don't have any asparagus." And then, remembering: "We have canned asparagus." I find canned asparagus to be vile, I don't eat that stuff. It is leftover from camping with Nathan. "Would you like that?" Nathan: "Please".

Um, okay. Maybe this isn't going to be so hard after all...

Rhyming!

In the past couple weeks we're definitely noticing that Nathan is getting the concept of rhyming. Some of the time, if I ask him to make words that rhyme with another word, he'll give me an appropriate response ("hat" for "cat", say). I asked him for words that rhyme with shoe, and he told me "poo", which he found hilarious, and that was the end of that game, since "poo" was now the answer to everything! This goes along with another new ability-- the ability to deliberately joke and say something funny.

Today we read "One Duck Stuck", a new favorite that I'm supposed to be reading and passing along to another family so that its progress can be charted online. It's become such a favorite that I can't actually pass it along until I buy a copy for us to keep. I pointed out to Nathan that moose rhymes with spruce. "Bloose," said Nathan. "Floose". Well, yes, those rhyme, although they are not, technically, words. And then "Father Goose!". Yeah, I think we've got rhyming!

Spray!

Nathan's new fun activity is being sprayed with the hose. He tells me "I want spray".


Sometimes he even tells me "that's a good job!" afterwards.

Testing

You may know I'm 10 weeks pregnant with Nathan's sibling. If you didn't know, you do now. I spoke recently with the genetics counselor we met shortly after Nathan's birth. We reviewed some things she'd told us 4 years ago. At that point I understood myself to be at elevated risk for Down Syndrome, but did not understand about other trisomies. Parents who have had one child with a trisomy are at elevated risk for another. I'm told the risk is 1% that we could have a second child with a trisomy, and that this risk applies not only to trisomy 21 (Down Syndrome), but also to trisomy 18 (Edwards Syndrome), trisomy 13 (Patau Syndrome), etc. I of course want a healthy baby, but I am not overwhelmingly concerned about Down Syndrome. Been there, done that, could do it again. Somebody with Down Syndrome has brought a great deal of joy to my life and continues to do so every day. Trisomies 18 and 13 are more severe. Only 10% of babies with trisomy 18 or 13 make it to the end of their first year of life, so if I had to choose a trisomy from those options, I'd take 21 any day.

One of the major decisions we face with a pregnancy involves prenatal testing. To test or not to test? And which tests? There are initial blood screening tests, which carry no risk to the baby but come with a 5% false positive rate and a 15% false negative rate. In other words, these are screening tool, not a diagnostic test. This was the type of tool (though it's a bit more advanced now) that missed Nathan's trisomy 5 years ago. Amniocentesis is diagnostic, but carries approximately a 1:300 chance of causing a miscarriage (I have seen figures ranging from 1:200 to 1:500). CVS (chorionic villus sampling) is diagnostic and can be used earlier than amnio, but carries a 1:100 risk of miscarriage. Ultrasound is not diagnostic but can often pick up physical features of trisomies. There has been no demonstrated fetal harm from the use of ultrasounds; they are regarded as safe, though there is no evidence as to whether repeated exposure to ultrasound could be in any way detrimental to a fetus. In Nathan's case, nothing was picked up on ultrasound, but presumably a more severe heart defect would be caught, or a severe brain defect, or spina bifida.

Sooo... where am I going with this? If you've heard me discuss prenatal testing before, you will probably be completely unsurprised to hear me say I'm not having an amnio or a CVS. I've had miscarriages and I've got a kid with Down Syndrome, so I've experienced both those things, and the risks are not equal to me. I'll take the risk of Down Syndrome over the risk of miscarriage any day. The idea of trisomy 13 or 18 does concern me more: it seems like it would be very hard to be pregnant and know that I have a choice to say goodbye now or say goodbye later, and either way it's much too soon. If you're in the mood for a good cry, view the Trisomy 18 photo archives here. I would like to warn you first that many, many of these are babies "born into heaven", or who died soon after birth. Trisomy 13 is rarer but similar in terms of severity and life expectancy. It is my great hope not to ever have to face one of these diagnoses. It would be hard.

I had planned to do just the blood screening since it does not involve any risk to the baby, but talking with my my OB and the genetics counselor has changed my mind-- I'm not seeing the sense in taking a highly inaccurate screening test if I don't plan to follow up with a more accurate diagnostic test in the event of a positive result. So the plan then is this: I will have my 20 week ultrasound in 10 weeks, when it is time for that. The genetics counselor will review it. If there are abnormalities, we'll discuss them at that point. If not, we'll proceed on with a pregnancy that will hopefully go another 20 weeks or thereabouts-- I'm hoping for a full term baby this time around.

Bouncy House

I'm excited today, about what might seem like a small thing. For the first time, Nathan willingly entered and played in a bouncy house. I've tried in the past, and he has been very scared of them. Today, at a very fun barbecue, he saw the bouncy house, indicated he wanted in, went in, stayed in even when bigger kids came along, and had to literally be dragged out when it was time to go. He was sitting, enjoying the bounce, singing "Kumbaya", and having a good time.

More Adventures

We're back from a week off, exploring some new places. Mostly, we had a lot of fun. We drove to Reno, Nevada, and stayed 3 nights in a hotel while we explored the area. This was Nathan's first hotel stay.

He liked the room, but was NOT a fan of the elevator; it was very scary for him. Since we were on the 19th floor, the stairs were really not an option. Nathan was very clingy and anxious in the elevator and fairly clingy in the rest of the hotel, but fine in the room and fine outside. He enjoyed looking at the Truckee River, and playing in the shallow water at the edge of Pyramid Lake and Lake Tahoe.

He's pretty anxious about going into deeper water, even if he's being held. Of course, this makes for fewer safety concerns, but sometimes it's hard as a parent to want your child to do a little more, be a bit more adventurous, and to find that he's simply content to splash in 3 inches of water.
We found this cool fountain in Sparks:

I was happy to see a bigger kid with Down Syndrome arrive to play; I always enjoy seeing other kids with special needs out in the community, and especially other Down Syndrome faces. I was less happy to see this boy pushing other kids and failing to listen to his mom at all. It was also one of those strange times where the mom did not seem at all interested in talking to me, didn't seem excited to see another child with DS, didn't seem to want to catch my eye. Oh, well. Perhaps this family was not having the best day...
We did some hiking. Nathan doesn't do a lot of hiking on his own, just a little, but he really enjoys riding on dad's shoulders.



And apparently he's so comfy he can sleep up there:

After we returned home, we went camping with DS friends. Unfortunately, Nathan developed some kind of virus that led to coughing and wheezing, so we cut that portion of the trip short. Good decision; by the time we got home he had fever too. Luckily, it seems to be a short-lived illness and he's already doing much better. Bummed to have to cut the camping trip short. We did get some pics, though: