Day 31

Well, it's Halloween and also the final day of Down Syndrome awareness month. After today I will go back to blogging when I have something to say rather than every day. It's been a challenge, especially on my busier days, but I'm always up to a challenge and I have managed to blog every day this month!
Of course, the need for Down Syndrome awareness is ongoing, but as a final message about awareness for the month, check out this video which was made as part of the National Down Syndrome Congress "More Alike Than Different" campaign:
http://www.ndsccenter.org/morealike/flash/
The video shows adults with Down Syndrome working, going to school, and being truly more alike than different.
And since it is Halloween, a few photos from Halloweens past:




and present

Fall Festival

Nathan and I went to the Farmer's Market today because they were having their Fall/Halloween festival with lots of kids activities. I thought the raptor display with hawks and burrowing owls was pretty cool, but Nathan showed no interest. He was too busy looking at all the kids to really attend to any of the animals: the piglets, the chickens, the goat, the Shetland ponies. Hello, Nathan, cute little Shetland ponies! Nope. At least I didn't have to pony up 5 bucks for the pony ride for Mr. Disinterested. Pumpkins, scarecrows, ho-hum. So what finally captured Nathan's attention? If you know Nathan, this will come as no surprise: Music Matt. Music Matt is a local guy who has CD's and teaches music to preschoolers and elementary schoolers. Nathan grabbed a front row seat

and joined the band

Awareness of Awareness

October is Down Syndrome Awareness month. That's the reason I've been posting every day. Many of my posts have just been cute or funny and I wanted to take a minute and get back to Down Syndrome Awareness. When Nathan was first born I didn't really think much of "Down Syndrome Awareness" as a cause. I mean, it's Down Syndrome, we're "aware" of it, what is there to talk about or (especially) raise money for?
I see things differently now. I am more aware of the general ignorance surrounding Down Syndrome. I am now aware of the fact that many expectant parents think this condition is so awful and that it leads to such poor quality of life that they routinely do prenatal testing to rule it out, and most who have a positive diagnosis of Down Syndrome terminate their pregnancies. I am more aware of the way people with cognitive disabilities are viewed in society and the hurdles they face. See this blog post by Dave Hingsburger for a well-written post on this. I hear stories from friends about hurtful things people say in public about their children. I see that people with Down Syndrome have challenges with learning and school, with independent living skills, and with fitting in to our society and enjoying the same freedoms and choices that others do-- the freedom to live independently, to work, to marry, and to participate in society without fear of maltreatment.
Down Syndrome Awareness month doesn't get much press. October is also Breast Cancer awareness month, and people are much more aware of the pink publicity. It's everywhere from grocery stores to major league baseball. Not to devalue breast cancer, an important issue affecting many women, but it would be nice to see the SF Giants sporting blue and gold Down Syndrome ribbons this month!
Our Step Up for Down Syndrome walk raised money for our local Down Syndrome group, the Down Syndrome Information Alliance. One of the important things this group does is to provide information to new and expectant parents. They also provide ongoing family support and education, bringing in speakers to educate parents about various topics related to Down Syndrome.
I noticed that the local Autism Speaks walk raised much more money than our Down Syndrome walk. What's up with this? Well, I think a lot of people are where I was, wondering why we need Down Syndrome awareness. Also, people are trying to find cures for things like breast cancer and autism. We're not trying to cure Down Syndrome. I think acceptance is not as sexy as cure, in terms of getting people to rally behind a cause. Cure sounds important. We picture laboratories and scientists with little beakers of something magical, and with a donation, being a part of this cure. Acceptance sounds... boring. Or like something we could each just do quietly, in our own communities, without raising money. Now, the Down Syndrome Research and Treatment Foundation is funding research to enhance cognition in Down Syndrome. They don't propose to cure Down Syndrome, but to find drugs to help people with Down Syndrome learn and remember better. Cognitive disability is one of the major challenges that comes with Down Syndrome, and research is being done at Stanford University, John's Hopkins and UC San Diego to improve this challenge. Research is also being done at the University of Arizona to develop better tests of the cognitive abilities of individuals with Down Syndrome. And let's not forget that people with Down Syndrome are more prone to Alzheimer's dementia and that research to help prevent this condition in individuals with Down Syndrome can also benefit others at risk of developing this very difficult condition.
So, there is important research being done to improve the quality of life for individuals with Down Syndrome, and it is research with wider implications. This is important, and it needs funding-- why is this not a more publicized aspect of Down Syndrome awareness?
For a variety of reasons, this is not a cause that gets much press. So here I am doing my part to explain why I think Down Syndrome awareness is important, why I'd like to see my local grocery store decked out in blue and gold balloons and Tim Lincecum wearing a blue and gold ribbon this month. There is much advocacy left for us to do, and one piece of this is awareness of the importance of awareness!

Smelly Feet

Nathan has a new favorite game: he likes us to smell his feet and pretend to be disgusted. He giggles hysterically. The more disgusted I seem, the funnier it is. It's lots of fun. He will also smell his own feet if I lift them to his nose, and again giggle hysterically. "Smell. Again! Smell," says Nathan, and "Eeeew, gross". Probably at some point we're going to really regret this. But right now it's pretty funny. :)

Halloween, a holiday for mom

Halloween for me is all about dressing Nathan up for my own enjoyment. Nathan does not like candy, he's not really into dressing up, and he's not interested in choosing his own costume yet. But I like dressing him up and taking a picture! I did get him one of those pumpkin-shaped treat buckets and he likes that a lot, probably more than he'd like any treats that might go in it. Maybe this year we'll trick or treat a little, a very little, like to a couple of neighboring houses to show off the costume. If Nathan will cooperate. Yeah, Halloween is totally a holiday for mom at this point.
I had some costume issues this year. I got a dalmatian costume from Freecycle. Tried it on, but it's too small:

Then I went to Target and picked out a pirate outfit. Didn't get around to trying it on him, but it looked a bit big. I was going to make it work, but then I was at the Gymboree outlet, where everything seemed to be overpriced by my standards (hello- outlets are supposed to be cheap!) EXCEPT for this dragon costume I got for 10 bucks! So cute! He can be a pirate next year. He's the cutest, sweetest, snuggliest, least ferocious dragon ever.

So independent

The rain was gone yesterday and we went again for a walk. Usually, to get Nathan to walk with me I have to hold his hand and sing. Hold his hand, or he won't go forward, he'll stop, he'll sit down, he won't walk. And singing seems to keep him moving. But yesterday when I took him out of the stroller, he didn't seem to want my hand, he walked by my side, straying just a bit at first on a narrow dirt path. Then we got to the paved path and he wanted to go to the right and sit on the bridge, rather than continuing left on the path. So we did that a minute, and then back on the path. In another block we turned again, and Nathan wanted to wander and stand under the apple trees. Then he headed off in his own direction, towards a structure that I would describe as the "bus stop to nowhere". It's a covered structure with benches that seems ideal for awaiting a bus, but it's on the bike path where no buses come. Nathan likes it a lot. And he headed off on his own toward it. So independent. He had no desire to leave and refused my hand. Finally I told him "Daddy has raisins" (it was true, we did have raisins, I wasn't lying to the child) and he made a beeline straight for his daddy and the stroller. We were then able to to finish our walk at a bit of a quicker pace.

Splashin' in puddles

Yesterday we had rain. Big rain. And so we got out the rain boots. Nathan and I had a big adventure walking in the rain from the car into Target. He was so delighted with the rain. I was so delighted with the fact that he didn't sit down in it, but kept walking (I had a good grip on his hand just in case).
Later it cleared some and Nathan, his dad and I went for a walk. I put the frog rain boots on Nathan. We discovered that he likes to kick them off when he's sitting in the stroller (or the carseat, or the shopping cart...), maybe because he can-- he's so used to wearing the sneakers and orthotics, layers of footwear with fasteners, and boots just slide on and off. So I put them back on, and we went splashing in puddles. Nathan started walking a little less than a year ago, so he did walk last winter, but he was so prone to sitting down and would not at all walk where I wanted him to that he never really had the opportunity to be out of his stroller when it was wet. So this was Nathan's first walk in rain boots to splash in the puddles. He was so excited. I had to show him that the splashing is supposed to happen with booted feet, not hands, though. We walked, we splashed, and he only sat down once. Today, though, as I was putting on his sneakers and orthotics for school , I remembered to tell him that this splashing in puddles is only for boots! Let's see which part he remembers: that splashing is fun, or that mom said it's only for boots. Any bets?

More of "I want"

I posted the other day about working on getting Nathan to say "I want", especially in light of the fact that he seemed to be using "again" for this purpose as well as for its actual purpose. I've been working on this with things Nathan really wants, so it is motivating for him. He has this Leapfrog toy, which we got at an estate sale for 5 bucks. He loves this thing, but I keep it in the closet because he can't do all of the things himself and there are lots of little pieces to lose. The toy says things like "it's story time" and "it's rhyme time" and then tells a very simple alliterative story about the word or gives you several rhymes. It also spells and sounds out the word. Because it's kept in the closet, Nathan has to request it. Nathan usually does so by telling me "it's story time!". However, we've been working on the "I want", so I've been prompting him to say "I want story time" (phonics desk is a bit of a mouthful; we can call the toy "story time") and then I prompt him to tell me which card he wants in it. I guess it's sinking in, because he came up to me in the kitchen and told me "I want dog".
Here's some video of Nathan and "I want":

"My Flesh and Blood"

We watched a movie last night called "My Flesh and Blood", about a woman in Fairfield (so just a few towns down the freeway from us) who adopted 10 children (in addition to her 3 biological children), all of whom had special needs. She says once you have 6 kids, it's not such a big leap to add more. Well, maybe, I guess, if you got to 6 in the first place. I'll take her word for it. The neat thing about it to me seemed to be that these kids then don't have to feel different at home, because everybody is different. It also put in perspective for me that some genetic conditions are painful and eventually fatal, and just more disabling as far as the effect on one's everyday life. She's got a couple of girls without legs, and those girls barely seemed to have a disability at all in comparison with the young man who does not make collagen (which keeps your skin on-- let me tell you, I didn't realize the important role collagen plays, but we really need to make that stuff). She also had a son with not only cystic fibrosis but also ADHD, and it seemed to me attachment issues and oppositional defiant disorder issues. He reminded me of kids I used to work with in the children's mental health field, but with the addition of a chronic and life-threatening genetic condition. So, a lot of work. It's amazing that Susan Tom took all of this on. There were problems, certainly, and I do think that a kid like Joe (the guy with cystic fibrosis and etc) would probably do better in terms of his mental health issues in an environment where he could have more individual attention. It seemed overall to be a good thing for these kids to have each other, though. And it made me think that raising one kid with Down Syndrome is really just no big deal!

"I want"

The teacher at the private preschool asked me yesterday if Nathan knows Baby Signs. Sure, but he has all the words for everything he signs and his words are clearer than his signs, speech being better than fine motor for him. Apparently he doesn't want to use words or signs to communicate at school, even the basics like "more". I know he doesn't talk as much at school as at home, but the public school is reporting good progress on such things as "more juice". I told the teacher that sometimes if you withhold something for a bit and wait he will produce the word, but not to withhold food unless she's pretty sure he's had plenty already, since he could potentially stubborn himself out of a wanted snack!
At home we're working on putting more words together. I hear "again" a lot, sometimes without having done anything in particular first! Again means again, but it also seems to mean "want". So I'm trying to work on "I want". We read "Going on a Bear Hunt", and then we read it again, and again, and again. This is not a real short book, and 4 times through is a lot of Bear Hunt. I decided that I wasn't going on a bear hunt again until Nathan said "I want Bear Hunt". He said it! We read it. "Again?" I told him to say "I want Bear Hunt". He fussed, he cried, I held out, and then in the most pathetic little voice he said it again, "I want Bear Hunt". Yep, they boy has words. He just holds out on us sometimes. Now, we need to keep working on this, and then we incorporate the "please" back in. He will say "again, please" if I ask him to. So, building up to "I want bear hunt again, please." We'll get there. It'll take some time, but we'll get there. I have no doubt. That child is so motivated to hear his books again that he will get there.

Lucky

Whenever I talk with someone who has lost a child, I remember how lucky I am to have my living, breathing, smiling, laughing child and that each day with him is a gift. It is a reminder that even when he's keeping me up at night drumming (yes, 4:30AM drumming!) or blowing his nose on my pantleg when I'm getting ready for work, those are little things, and there are people who would give anything to have the problem of sleeplessness or cleaning up bodily fluids rather than the problem of empty arms.

I don't think I have those moments of feeling sorry for myself or for our family about the whole down syndrome issue very often anymore. Initially, I did have those feelings, and the "why me? why us?" kinds of questions. I think this has receded and especially so the more that I stay in the moment with my child and what he is doing and accomplishing and the less that I compare him to others. But if I ever start to go back to that kind of a place, please just slap me and remind me how lucky I am. I have my child.

Baby bumblebee

This morning I was having a conversation with Nathan. The older he gets the more we are able to have some sort of flow of related words back and forth, although these are generally not "conversations" in the more traditional adult sense. It's a bit more like free association at times, I say something and Nathan says whatever comes to his mind that relates to one of the words, often a song.
Nathan wanted to sing a song, which he calls "Baby Mine" (I'm not sure what the actual title is, but "Baby Mine works fine). The lyrics are "You get a line, I'll get a pole, honey/ You get a line, I'll get a pole, babe/ You get a line, I'll get a pole/ we'll go down to the crawdad hole/ honey, oh baby mine". Nathan: "Baby mine". We sang it. "Baby mine again". We sang it again. "Baby mine, again". Okay, starting to get sick of this! So, since we are on the subject of "baby mine", and to provide a distraction from this darn song, I discussed babies. I told Nathan he used to be a baby, he grew in mommy's tummy. Then I asked Nathan if he'd like to have a baby brother or sister. "Baby brother", said Nathan quite clearly, surprising me. And then, enthusiastically, "baby bumblebee!" I guess he'd rather have a bumblebee! And of course, I'm sick of that song too.

Requests

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Nathan has taken to requesting the people he wants to see. Unfortunately those people are not always available right then! Over the weekend while I was working, Nathan's dad reported that Nathan was asking for our friend Lisa. Daddy thought he was asking for pizza. We had leftover pizza which was offered and refused. Nathan led his daddy to the front door and had him open it, but there was no Lisa. Apparently he was pretty upset that he can't just will friends to drop by whenever he thinks of them.
Yesterday he said to me, "Carly!". Carly is his music therapist. I told him we don't see Carly today, we saw her yesterday at the Step Up walk. "Again, Carly!" said Nathan. This one ended a bit better though because I told him that even though we couldn't see Carly we could sing some of her songs, and this seemed to pacify him a bit. :)

Carly and Nathan

Step Up for Down Syndrome

Undeterred by clouds and a little sprinkle of rain, we stepped up for Down syndrome yesterday. Nathan was willing to walk a good chunk of the mile.

He walked for a bit holding onto his buddy Landon's stroller.

We were joined by Nathan's former teacher and her husband and also a colleague from my work and her husband. Here is Ms. Pam walking with us:

Nathan enjoyed lunch and music after the walk:


It was a fun day and we raised some $$$ for the Down Syndrome Information Alliance.
And, yes, that is the smallest shirt they had!

Moosis peacock?

We have 2 cats. They are named Moosis and Cleo. Since you cannot at all tell from those names, I'll tell you that Moosis is female and Cloe is male. Don't ask. Nathan knows their names, and will say "Moosis say meow", "Cleo say meow", etc. The other night as he was *supposed* to be falling asleep, he said:
"Moosis peacock- err errr!
Moosis sheep - baa
Moosis rooster - doodle doo!
Moosis horse - neigh
Moosis cat - meow
Cleo meow"

I guess this was a Nathan joke!

Just being a kid

We had a potluck dinner with neighbors from 2 and 3 doors down last night, complete with energetic kids. For a while Nathan seemed pretty content to watch Jack and Anna run around, very interested in observing this. And then he finished his dinner and got down and engaged with them. There was a photo-op moment which seemed to end the moment a camera came out (isn't that always the way it goes?) wherein Jack, Anna and Nathan were all sitting on the mini trampoline playing together. Everybody ran around, played instruments, played with toys, and had fun. This is such a normal thing, right? Kids playing around and wrecking havoc together while parents talk. But I'm deeply appreciative of this normal. It stands in stark contrast to the last time we had multiple typically developing kids over, which was Nathan's third birthday. Last night, though, Nathan wasn't scared even though Jack's older and Anna's faster. He was just a kid, excited by the excitement in the house, and playing, interested in other kids. So cool.

Bibs

Somebody around here thinks that he is too big for a bib. Perhaps. Bibs are babyish. Nathan is 3 1/2. BUT what about the mess?
I've taken to putting one of my shirts on Nathan, over his clothes, at least for yogurt-eating purposes. He has not yet mastered shirt-removal in the manner of bib-removal, and I use a binder clip in the back to shorten up the neckline. I'm not sure mom's shirt preserves the dignity and big-boy-ness, though!

prenatal testing

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I had a conversation the other day about prenatal testing. I was telling somebody that I would not do invasive prenatal testing with any subsequent pregnancies, would not risk a 1:300 chance of miscarriage (some sources, including a British government website say 1:100, but my understanding is that the risk is generally understood to be 1:300 now). I also said I wouldn't terminate a pregnancy due to a diagnosis of Down Syndrome. "Terminate just because of Down Syndrome? Who would do that?" she asked. "Well, actually, about 92% of people who have prenatal diagnosis." It's an amazingly high figure. What I don't know is what percentage of people choose to opt out of diagnostic testing. But this 90-92% has been a consistent figure I've seen for termination rates of pregnancies with a positive diagnosis of Down Syndrome.

I'll be honest; I don't know what I would have done 4 years ago if my AFP test would have come back positive and my doctor had recommended an amnio. I don't know what I would have done if I'd had that amnio. We'd have had to talk about it and make a decision. I'm glad we didn't know, didn't talk about it, didn't have a choice to make. We had a child to take home and love. And now, now that I know what parenting a child with Down Syndrome is like, I have a hard time understanding how so many people could think that this is not a life worth living or a child worth raising. People seem to think that a child like mine can't have a good life. But look at the trailer for the new documentary movie "Monica and David". Or at The Specials, an online docu-soap chronicling the lives of housemates with disabilities, predominately Down Syndrome. Tell me these people don't have good lives!
I respect the rights of others to choose whether to have any baby at all, to have choices about unwanted pregnancies, and I do not think it is my place to tell people which babies to have. At the same time, for me, I don't think the arguments about quality of life are valid. My kid has a good life, and can continue to have a good life. Stuff could get in the way of that, as it could for anyone's child, and we can't predict all of that, but in general there is much hope for a good life. I don't think any of us wish for our child to be born with any condition that makes things a bit harder, but a condition like Down Syndrome is not enough for me to reconsider that child's life. My hope would be that if given more accurate information instead of a laundry list of medical problems with the prenatal diagnosis, more parents would see a life worth living.

"Each life has its place"

It's always interesting which songs Nathan latches on to. I tire of some more quickly than others. He will take my hands and say "bumblebee!" and I groan, not really wanting to sing "Bringing home a baby bumblebee" again. And, of course, for whatever reason, Kumbaya is a big, big hit for any occasion. Oddly, he has also latched on to the Indigo Girls "Virginia Woolf". He will request it by saying "to my soul". I love this song and don't mind singing it a bunch. I don't know what it means to him, but even if much of the song is not terribly relevant I find the line "each life has its place" totally appropriate. I made some video today of us singing that song.

A weighty issue...

Looking at this chunky little guy, thinking I probably have to teach him portion control and healthy snacking and etc etc, it's amazing to remember how skinny he used to be. We had to add calories to his breast milk so that he wouldn't burn more through the arduous work of sucking than he took in. I bought a baby scale because I agonized over every ounce, and the weekly weigh-ins at the doctor's office weren't enough for me. He was off the bottom of the curve, both the typical weight curve and the DS weight curve. Then , once we got him on solid foods, Nathan had a protein intolerance and we had to figure out ways to get enough nutrition in him without any dairy, soy, meat, eggs, peanuts or beans. But he gained weight, he grew, he thrived! Now I don't weigh him in between doctors visits, which at age 3 are annual except for illnesses. I could give you a ballpark figure on height and weight, but I don't know it down to the tenth of an ounce. He outgrew the protein thing over a year ago, and our nutritional concerns have become the normals ones-- getting a variety of fruits and veggies in, getting all the vitamins and minerals, and of course, the concerns about not chunking out too much!
Here is skinny Nathan, his onesie is baggy (and no, Daddy is only pretending to feed him guacamole):

And a much more solid kid, chowing down on pizza:

NICU reunion

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I am on call Saturday so sadly we have to miss the Kaiser Roseville NICU reunion. Nathan wasn't actually born at Kaiser Roseville but the NICU at Morse Avenue is closed and the new one is supposed to be much nicer, though I hope I never have occasion to find out. One premature baby and one month in the NICU is probably enough to last a lifetime.
The invitation to the reunion asks that parents bring baby picture and a current picture of their child. When Nathan was in the NICU it was really comforting to see the pictures in the hallway, to read that babies littler than 2lbs 13oz had made it out of there and gone home and done fine. Even though we can't attend the reunion, I wanted to send pictures of Nathan. I sent one of him as a preemie and one of him now:


Oh, and Nathan wants to blog, too. He says:
bbbbbbbe4b4eb4e5jhyt

Walks and fundraising

Our Step Up for Down Syndrome walk is coming up in one week. The walk is a fundraiser for Down Syndrome Information Alliance, and this year I have actually done some fundraising, although I have some ambivalence about it. I like the Step Up walk and the Buddy Walk partly for the awareness-raising and getting together aspects, and money sullies it all a bit for me, even though of course it's going to outreach for new parents and education and support for the DS community. I just don't like to hit people up for money. I've done a number of charity runs lately where the entrance fee is how the money is raised, and I kind of like that because then I don't bug anybody else about supporting the cause; I just do so myself. However, I would hate for a Down Syndrome walk to have a higher ($25-35) entrance fee for everybody because this would exclude a lot of families. Our walk has a registration fee of $10 for an adult and $5 for a child, which is pretty affordable. And then people can decide how much fundraising they want to do or can do. We can all get together and have a fun day, regardless of who raised what. Now, if anybody out there wants to join Team Nathan, there is still time, and I promise, I won't make you raise money if you don't wanna!

Nathan walking in last year's Step up walk. He was not walking independently then, but is now!

playdate!

We had a great turnout of 9 families for our DS family playdate in the park today, lots of fun.
Nathan and his buddies, Landon and Marcus

Nathan with Luis's sisters, Dulce and Daisy. They are so sweet with him.

Good times!

D-O-G

Nathan woke up this morning spelling "D-O-G, D-O-G dog". Of course, I know exactly which Leapfrog toy he's memorized it from. The same toy says "it's rhyme time" and "it's story time". When Nathan says "it's story time", it doesn't mean he wants me to read a story, it means he wants that toy. He actually gets so addicted to it, such a single-minded focus, I hide it in the closet. But Nathan remembers, and apparently dreams about it.
Yesterday he said "B-O-T-S". Bots? What the heck are bots? And then I remembered. We have a Laurie Berkner CD in the car with a song about B-O-O-T-S boots. I also heard him counting "uno dos tres cuatro cinco siete siete siete". He has so many books memorized too, and even if he doesn't know what the words mean he says them in order. He can recite much of the book "Guess How Much I Love You", complete with my intonation.
I thought memory, and especially verbal memory, is supposed to be a problem in people with Down Syndrome! Again this brings me back to the idea that while people with Down Syndrome share many characteristics, they are people, each with his own strengths. Nathan's memory amazes me every day!

What would you want other people to know?

The other day somebody posted on Cafemom that she is going to give a class presentation on Down Syndrome and wanted to know what moms would like her college class to know about their parenting experience. A couple of moms really wanted people to know how hard it is. This just reinforces to me that our kids are more alike than different, and as Jennifer Sanchez said yesterday, moms of kids with Down Syndrome are more like other moms than they are different! Some of our kids are going to be more challenging, just like some of everybody's kids. Some of our moms are going to be more stressed, just like some of all moms.
My thought on this were that I'd want the class to know that there are some challenges, especially health challenges (heart surgery, for example, was no fun), but that overall, for me, parenting a child with Down Syndrome is NOT as hard or as bad or scary as one might think. I'd want people to know that I experience the same joys other parents do when my child says "mama" and offers me his cheek to kiss, maybe even a little extra joy since it took longer to get to that moment. I take a lot of pride in his accomplishments. I have fun with him. We sing, we go to the park, we snuggle. We snuggle a lot. I wish he slept better at night, but I don't think I am alone in this in the parenting world. There are times when Nathan seems "different" or when I am reminded of differences and challenges, and these moments can be difficult. But on balance, the joys are greater, more frequent, and carry so much more weight for me than the challenges.
My DS family, please post comments and add what YOU would want others to know about parenting a child with Down Syndrome. I think our experiences are all different, because our kids (and we) are all different!

Flashback

Here is baby Nathan, born 2 lbs 13 oz at 32 weeks gestation on March 1st 2007.




So amazing to look at that little guy and see how far he's come!

more kissing

Right now on Mondays, I put Nathan on the bus and go to work while he goes to school, then is bussed to his other school for an hour before I pick him up. My intention had been to meet the bus at the school since last year and this summer he was on the bus an hour. However, now he is dropped of first and only on the bus 15 minutes! I can't complain; the school bus is not intended to be used as childcare. So I've bought an hour of childcare, and Nathan is at school just long enough to play a bit and have lunch with his friends. (On Tuesdays and Thursdays he is there all afternoon, but Mondays just an hour.)
When I went to pick him up yesterday, he was eating lunch (well, about half of lunch had been tossed on the floor, but he was eating some). As soon as he saw me, he was all done with lunch, up out of his seat. While I talked a bit with the teachers, little girls started getting up to hug and kiss Nathan goodbye. I may have talked about a certain serial kisser before, a little girl who hugs and kisses on Nathan so much that one time he finally got fed up and bit her! She was the first up to hug and kiss Nathan goodbye. He tolerated this. Then another little girl got up for a hug and kiss. The first girl of course needed to repeat the performance a few more times. A little boy got up to hug him. Then another little girl got up. Nathan looked at me and put his arms up like "Mom! Save me!" and the teacher decided it was a good time for everybody to sit back down and finish lunch. All this kissing can get to be a bit much for Mr. Nathan but it's soooo cute!

Birthday parties

I debated whether to take Nathan to a friend's son's birthday party or not. I rather suspected he would not play with the other kids, and that the setting (the gymnastics gym) might be too challenging for him. At the same time, I would like him to be a part of things like this and I am happy that he was invited. I woke him from nap to come and he was tired and scared and clingy, so not off to a good start. I took him outside and calmed him down, got him out of the shoes and orthotics and socks (why didn't I just put him in sandals before we came?), and walked him around the mats and tumbling stuff. We found some piece of equipment that rocks, and he was quite content to sit there and rock in it. Somebody brought him a party hat and he rocked and waved the hat. I tried to engage him in other stuff, trampolines (he doesn't jump yet, but likes to be bounced), etc, but he was happier where he was. The facilitators had the kids do a couple games to music, and Nathan danced and played with a rythym stick, which he loves. He enjoyed pizza, but because of the noise level in the eating area, he was scared and needed to have a hand on me at all times. Still, I am happy he can enjoy pizza with the other kids now-- it was about a year ago he finally outgrew that intolerance to proteins that really limited his diet, and I am still so happy for him that he can eat what he wants. At the end there was some more play in the gym, and bubbles. We found a bigger piece of equipment that rocks, and Nathan had big smiles and squeals of delight when I rocked him in that! I also met a mom of another party guest, a 5 year old who is on the autism spectrum and who used to attend Nathan's special preschool. He's now running and playing with the other kids, so that was nice to see. Mom only had to intervene in one meltdown.
So, in the end, I was glad we went, Nathan did have fun. I was pretty exhausted, but I think that's probably a normal reaction to small children's birthday parties. If you also read The Bates Motel you'll see that my post relates to hers today in some ways-- the difficulties of taking your child somewhere where they are supposed to have (a certain kind of) fun. I guess the bottom line for us is this: Nathan often has his own kind of fun, and then I get to work on being okay with that.

Meeting a Friend

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Yesterday we got to meet a longtime online friend and her family. I saw on Facebook that Martina was headed to the Special Kids Family Picnic at Fairytale Town. Since it's not too far I decided to go and find her. I guess I was overexcited, missed the freeway exit, and had to turn around. In the process, Nathan fell asleep. We got there and learned there was a guest list. No matter, they added us. I found Martina and her family, Nathan still sleeping. Her son, Adam, who is 5, held Nathan's hand and kissed him, which didn't both him a bit since he was still passed out cold. I had to wake him up so they could actually meet Nathan. He was still pretty groggy and tired, but he had some lunch and ice cream and perked up a bit and we got to take some pictures of these boys together. Sooo awesome to finally meet in person!

Kisses

October is Down Syndrome awareness month. There is a challenge out to blog daily for the month of October. I am really not an every day kind of blogger but I will do my best to meet the challenge in order to raise awareness this month.

One thing I love, love, love, is my Nathan hugs and kisses. This morning after I brushed his teeth, his little arm came up around my neck and he pulled me toward his cheek for a kiss. When I tell him he's sweet, he smiles and kisses me. He still needs to work on kissing without tongue, though! He kissed our neighbor's dog this way recently-- tongue out, the same way she kisses him. Yuck!

"Again, please, yogurt."

While eating breakfast, Nathan's yogurty hand touches mine, to get my attention. "Again, please, yogurt." How's that for a 3-word construction of his own?!! He still had some yogurt in his bowl, so I think he was asking me to help him with his yogurt again, but he did then eat a second bowl, so it could also have been a request for more. Either way, 3 words! And polite, even.