Grilled cheese tour of the Northwest

We're back from a whirlwind tour of homes of family members in the Pacific Northwest. For Nathan, this was also a tour of variations on the grilled cheese sandwich made in different kitchens. He enjoyed a grilled cheese fried in bacon fat I made for him at Uncle Brian's in Portland Oregon, although he would have nothing to do with the bacon his uncle made for breakfast, nor the bacon donut from Voodoo Donuts:

Nathan had a good time with his 1-year-old cousin and all of his toys. here they are at the park:

Next we traveled to Edmonds Washington and stayed with Nathan's Great Grandma Shy. He enjoyed toasted cheddar on bread with seeds and nuts there. It was pretty cold in Edmonds and I'm not so sure Nathan appreciated being dragged outside

but he enjoyed going out for pizza and reading books with Great Grandma:

We also visited my second cousin and Nathan's third cousins before heading farther north to Bellingham WA, where we visited Nathan's paternal grandparents and stayed through Christmas, eating lots of Velveeta on wheat during the stay.
Here is Nathan riding the large stuffed bear,

walking with his grandpa to get the mail

and some Christmas excitement

.
Of course, the ribbons were actually the most exciting part of Christmas.

Next we migrated back to Oregon and spent a night at Grandma Laurey's in Boring. Nathan enjoyed grilled sharp cheddar on baguette and another Christmas. We learned that raffia is every bit as good as ribbon.


The 10-hour car trip on the way up somehow became an 11 hour ride on the way home, raining the whole way, except for when the rain became snow. Nathan tolerated all of this travel and change about as well as any 3 year old I can imagine, but of course it's good to enjoy whole wheat english muffins with tomato sauce and cheddar in his own chair, in one's own home.

A Kaboomzi-la NayNay

Some advice: don't ever make up a song for your kid unless you want to hear it repeated back. A lot. I made up a little song, without thinking much of it, which became an instant hit with Nathan. The lyrics, such as they are, go like this: "My Nathan is a cute, cute Nathan/ He's the cutest little Nathan that I know/ My Nathan is a sweet, sweet Nathan/ He's the sweetest little Nathan that I know". Other adjectives are substituted in for a longer song, continued until I run out of adjectives, then repeated. Nathan sings this to himself" "My NayNay is sweet, sweet NayNay/ is sweet NayNay ah know". He has also taken to making up his own verses: "My NayNay is a kiss kiss NayNay", and, adorably, "My NayNay is a rock music NayNay". Yesterday when his Grandma was watching him he slipped on the carpet and apparently she said "kaboomzi-la!" Nathan has decided he likes this new word and has been using it quite a bit this morning, even going so far as to sing "My NayNay is a kaboomzi-la NayNay"! He is certainly the most kaboomzi-la Nathan that I know.

"Philosophy"

We're still stuck on "Closer to Fine" around here, and Nathan has picked up the word "philosophy" from this song. Since his dad will someday soon actually have a PhD I thought it would be pretty cute of we could teach Nathan to run around saying "doctor of philosophy"! Little kids and big words, it's just cute. And of course, I have video. Here you have myself and Nathan demonstrating that we sing this song waaaay too much and know all the words:

Oh, and Nathan's not in jail here; that's his mostly-toddler bed. It's one of those cribs that converts and I only partly converted, but he's got the one side open so he can get in and out with ease.

Closer to Pine

"Closer pine!" says Nathan. "Closer pine!". Nathan has a new favorite song, the Indigo Girls' "Closer to Fine". I've always loved this song, and now I guess I'll learn all the lyrics. And sing them many, many times.
Here is some video of Nathan singing along with the Indigo Girls (yes, it's a Youtube video of Nathan singing with a Youtube video).

Taking requests...

I remember when Nathan was unable to communicate what he wanted verbally or make choices. I remember holding two items out in front of him and deciding that whichever one he reached for first was his "choice". I remember later asking him questions with 2 choices, and he'd just always repeat the second one. His dad got good mileage out of this one by asking "who do you like more, mommy or daddy?". I also remember the day I asked Nathan what he wanted for lunch and before I could give two choices he gave an answer, communicating what he wanted.
Fast forward to now: the child is nonstop requests! Last night we got home from work and school at 6:15. Nathan climbed up into his chair requesting "Juice! Carrot!", so not just juice but a specific type of juice. I told him I was cooking him some fish sticks but they were not ready yet and asked him if he'd like an orange. "Orange," says Nathan, and then, thinking on it, "stick!". He settled for the orange while waiting for the fish sticks. He ate his fish sticks, cornbread and green beans. Me: "more green beans?" Nathan: "stick." Yeah, of course. he wants more fish sticks, not more veggies. He got more green beans too though.
This morning he said "toy". I knew which toy he wanted but not where it was. A quick search of the house did not turn it up. Since we couldn't find the toy, he had another request: "Wonderpets." No, no TV in the morning. No way. I stream Wonderpets on Netflix for him after nap when I'm waking him up and he's super cranky. But not before school, not just any time he asks. No way. So he gave up on that one. "Bubbles?" Okay, bubbles. I blew bubbles. Nathan does not rush to pop the bubbles the way many kids do. He likes to watch them. He gets very excited, extending his arms and legs, great joy on his face. Bubbles done, we got him ready for the bus. "Itsy spider?". Yep, there's time for Itsy Bitsy Spider before the bus. "Itsy Spider." Again? "Itsy Spider". And as soon as we got home from school today the first words out of his mouth when we came in the door: "Itsy spider?".
Wow. It's now a nonstop barrage of requests and choices. It took him so long to be able to do this that initially I felt like I had to give him everything he asked for since he used his words. Now, no. I still want to encourage the use of words. Often I will make him use more words, tell me "I want Itsy Spider again". But sometimes the request is not going to be honored. I will tell him no, and repeat what the request was, so he knows I understood his communication, but that the answer is no. After all, it can't be all Wonderpets and fish sticks all the time!

for doctors

In addition to the stories by moms for moms, Blessed By Downs is also collecting stories by parents for doctors. I'm sharing mine. here's the prompt:
Blessed by Downs… for Doctors!!!
(This one will be… FROM PARENTS to DOCTORS to help them better understand
Down syndrome from individual parent(s) perspective… not just a “generic” text book education!!!)
Some things to consider when writing your answers/suggestions/medical experiences:
~ Who told you your child had Down syndrome? OBGYN or Pediatrician
~ Did they refer you to someone/organization/etc… To who/where?
~ Was your doctor(s) supportive? Y or N Explain:
~ Did you feel your doctor understood enough about… your feelings, fear, facts, medical issues, “real life with a Down syndrome child as WE now know it today”? Y or N Explain:
~What would you like doctors to know? Add ANYTHING you feel necessary!!!

And my story:
My son Nathan was born by emergency C-section at 32 weeks 4 days, weighing 2 lbs 13 oz. The cardiologist found 3 holes in his heart, and the neonatologist soon told us that he suspected that Nathan had Down Syndrome. He pointed out the physical features he saw: the palmar crease, the folded ears, the flat nose bridge, and well as the low height and weight for gestational age. Dr. Gurel was very caring and sensitive in his demeanor, he pointed these things out and told us what he suspected but that he had called the genetics department and that they would come talk with us and do bloodwork in order to make a diagnosis. Initially, I wanted to deny the Down Syndrome and explain away those features. He didn’t argue with me, just told me what he saw and suspected but that he could not make a diagnosis until the bloodwork came back.
An MD geneticist and a genetics counselor came to the hospital and met with us twice, an initial meeting and a follow up once the bloodwork was back to show us the karotype, confirm the diagnosis and answer our questions. On the first visit, they gave us the book “Babies With Down Syndrome: A New Parents Guide” to read. While this book is informative, it would likely not be my first choice to give to a new parent, or I might use it in conjunction with other materials. I was also given the business card of a mom who heads a local Down Syndrome group. I think it is important to give these resources, but like most parents I did not call up a stranger. I would not have known what to say. I think that giving me the organization’s web site and the printed materials they’ve put out for new parents would have been more helpful. Our local organization, the Down Syndrome Information Alliance has a lot of good information available online and has published a couple of books, one featuring families of children with Down Syndrome and the other featuring adults with Down Syndrome living and working in our community. As a parent, I wanted to see positive images of Down Syndrome: cute children, happy families, people engaged in and participating in the activities of life. I think that providing some hope is very important when giving this diagnosis!
The people from the genetics department told us that people with Down Syndrome are no longer institutionalized, parents raise them at home, and that some parents do give children with Down Syndrome up for adoption and there are families waiting to adopt children with Down Syndrome. I was probably a little offended at the idea that I might give up my child, but I’m sure this is useful information for some parents to have, to help make them aware that there are options if they cannot handle this. I think that on balance we got good information, but I think that some stories and pictures from real families might have been a nice adjunct.
I did not have much in the way of prenatal testing. My AFP came back negative and since I was 30 I did not go any further with testing. The genetics counselor told us that at 35 they generally recommend diagnostic testing because the risks from the test at that point equal the risk of Down Syndrome. She indicated that these two risks do not carry equal weight for everyone though, and so genetics counseling is moving more towards case-by-case decisions based on the values of the patient. This makes a lot of sense to me. For some, the risk of raising a child with disabilities might far outweigh the slight risk of miscarriage form amnio or CVS testing. I have a child with Down Syndrome and a good understanding of what that entails, and I would absolutely do it all over again. I’ve also had 2 miscarriages and know a lot about what that entails, and I’d do anything I could to avoid having that happen again! So, the risks are not equal for each woman, there is nothing magic about age 35, and I do believe that every prospective parent should make an informed choice about testing based on individual risks and values. I’d never risk a miscarriage in order to gain some knowledge that would not affect anything, since I would not terminate a pregnancy on the basis of a diagnosis of Down Syndrome.
I’d also like to add that while the first year of life, some of the health issues, and the adjustment to the diagnosis were hard, things got better. My son has had some health issues and he certainly has global developmental delays, but he has many strengths and he’s a lot of fun. Oftentimes as a doctor, you might see my son at his worst: sick or in pain, or at a well child visit but grumpy, having just been weighed and measured and having had his arm squeezed by a blood pressure cuff, and not wanting his ears looked into. You might not see him at his best, laughing, playing, singing. So I want you to know about those times and to know that this diagnosis is not all about hardship, but there is great joy, as with any child.
Children with Down Syndrome are at risk for a whole host of medical problems. However, not all children will have all of these problems. I think as a new parent receiving a diagnosis or as a parent with a young child going through some of these issues (heart problems, celiac, hearing impairment, etc), it is important to know that people with Down Syndrome are loved by their families; they do develop and grow, though on a different timeline; they may have medical problems but as a family you get through them; and they can go on to do many things in life, in terms of social activity, work and recreation. To my mind, a life affected by Down Syndrome is a life worth living, I don’t believe that it is a life of suffering or that any of us would be better off if my son were not here. On the contrary, I believe I am a better, stronger, more compassionate person because he is in my life. If you saw my son, you would see that he is not suffering (well, unless you saw him when I was declining to read the same story for the umpteenth time—then you’d think he suffered). He enjoys songs, stories, the park, school, and his family—just like any preschooler. He does look different. He does act different. But as a mother, I see past the differences; I see my son. And it becomes my job to help others see past the differences too.

My story...

I just finished writing my story for Sheri at www.blessedbydowns.org (web site is not up and running yet). They are looking to put together information for new and expectant parents, and specifically seeking stories from parents for this. I thought I'd share what I've written here. Here is the prompt Sheri sent:
~ When did you find out your child had Down syndrome? Before or After Birth? Who told you?
~ What were you told about your child from the doctors?
~ How/What did you HONESTLY feel & think when you FIRST heard the news?
~ What did you know about Down syndrome before your child was born?
~ How many other children do you have & where does your child with DS fit in?
~ Did your child have any heart/health issues? Addressed or still need to be addressed?
~ How has your child changed your life? Brothers/sister? Other family members? Friends?
~ Does your child attend school? How are they doing in school? College/vo-tech? Jobs?
~ Is there anything you would change? If so, what & why?
~ End your story with ‘why you feel you were… BLESSED BY DOWNS’!!! J
PLEASE add ANYTHING else you’d like to share about YOUR story in 2000 words or less!!!

And here is my story:

I had a great, healthy pregnancy at age 30. I an anterior placenta and so I didn’t always feel a lot of fetal movement during the pregnancy; I really had to pay attention to feel my son. I told my nurse practitioner that I had a time where my kick count seemed low; I did get the required number of kicks, it just took almost the whole hour. She told me that if this happened again, I should call right away. At 32 weeks 3 days gestation, I came home from work, made dinner, and settled down on the couch to read a book and count kicks. They weren’t coming. I called and was directed to the hospital. My son Nathan was born by emergency C-section the next morning, weighing 2 lbs 13 oz. He had jaundice, and no ability to suck. The cardiologist was summoned and found 3 holes in his heart, and the neonatologist soon told us that they also suspected he had Down Syndrome. Initially, I was devastated. I did not know much about Down Syndrome and everything I did know was bad. I expected that he would look physically different and have mental retardation. A geneticist and a genetics counselor visited us, confirmed their suspicions of Down Syndrome, and gave us the book “Babies With Down Syndrome: A New Parents Guide” to read while we were awaiting the return of the bloodwork. I can’t say that this helped a lot initially. I didn’t like the pictures in that book; the kids looked different. I had primarily thought about mental retardation when I thought about Down Syndrome, but there were a lot of other potential health problems to learn and worry about, too. My husband and I decided we’d just focus on getting our little preemie big enough and strong enough to come home and then we’d worry about Down Syndrome.
Nathan is our first child, much wanted and planned for. We’d like to add to our family and I think it would be good for Nathan to be a big brother, but at the moment he’s our only. Being the first child, we were just learning about parenting in general, let alone special needs parenting, and we had plenty of professional advice and help. I changed my first ever diaper with the guidance of a of a NICU nurse, and we had early intervention services in place as soon as we brought Nathan home at one month of age. We had a teacher, Robin, from the county office of education who visited every two weeks and provided support and ideas about how to stimulate and encourage Nathan, even in infancy. Robin was always very positive and encouraging, excited about every new thing Nathan did. I think that helped me to focus on the positives too.
Nathan has had some health issues. Initially, he had fluid in his ears and failed his newborn hearing screen. Thankfully, this problem resolved without medical intervention and has never returned; Nathan’s hearing is great. The heart defects caused pulmonary hypertension at about 8 weeks of age and he required medication for a time. Nathan developed a protein intolerance and was unable to digest most proteins for quite some time (this is not a particularly common among babies with Down Syndrome). Luckily I had continued expressing breast milk because we never found any formula he could tolerate. I expressed breast milk for 2 years and he was certainly NOT malnourished—my tiny preemie got chunky! After a bad second winter in which Nathan got both pneumonia and RSV, we and the cardiologist felt it was time for the heart repair. Nathan had open heart surgery at age 2 to repair his Atrioventricular canal defect and cleft mitral valve. The 10 day hospital stay was stressful and scary. My husband and I actually lived in the University of California San Francisco hospital during that time and we were stressed and sleep deprived, coping with a child who was stressed and in pain, but who had an odd reaction to narcotics: insomnia! Nathan would get very tired but be unable to sleep on the pain meds. Once he got home, though, he recovered quickly. These days, we see the cardiologist annually and the pediatrician for well child visits and the occasional illness, like anyone else.
In his early intervention program, in addition to the home-visiting teacher, Nathan had speech therapy, occupational therapy and physical therapy. We worked with one OT on feeding and oral motor issues as Nathan developed a texture aversion around the time the protein intolerance became apparent. With a kind of instinctual wisdom, he realized that new foods made him sick and he only trusted smooth Gerber purees. We had to do some work to increase the variety of things he’d eat. Our EI program also included a toddler class beginning at 18 months. As Nathan got closer to 3 and the transition to school, I was encouraged to leave him for the duration of the class, to facilitate that transition.
I do work part time, and Nathan has been fully included at a private preschool/daycare center here in town since 14 months of age. He is there 2 days per week. He has transitioned through their program, from the infant room, through the toddler and 2’s rooms, and now to the preschool room. At age 3 he also started special education preschool 4 mornings per week, and he now gets his speech, occupational therapy and physical therapy at that setting. I think that right now he needs to spend at least some time with a teacher who is skilled in teaching students with special needs. Nathan is not especially hard to care for. He can be hard to teach. When something is hard for him, he tends to avoid it. I believe he benefits from some time with instructors who know how to motivate him to try. His teacher and the therapists have come up with some great ideas, and I can then use the same principles at home. I also believe he benefits from time in a regular classroom setting with his peers and that they benefit from knowing someone who is a bit different and does have some challenges. His private school setting has always included and supported him, and the staff from the public school have visited there and suggested strategies for motivating Nathan to participate more fully. The private school teachers have eagerly implemented suggestions. He’s got the best of both worlds, and it all works together.
Becoming a parent would have changed my life, regardless. However, being the mom of a child with special needs has made me take a look at my values. I’ve had to take a look at my thoughts about people with special needs and the value I had placed on academic or intellectual achievement. I’ve had to let go of charts and milestones, let go of comparing my child to others (either typically developing children or others with special needs), and focus on his strengths and accomplishments. I’ve had to think about my expectations for him, and in doing so to think about expectations that we would have for any child. I want him to be happy, to be independent, to do meaningful work, to have meaningful relationships. I believe all of these things are possible.
There is not much I would change. I am glad I didn’t have prenatal diagnosis or any decisions to make other than the decision to take our son home and love him. I feel that we were given the diagnosis in a caring and professional way. We’ve had services and supports in place every step of the way. I didn’t reach out much to the Down Syndrome community until after my son was over a year old. I went to a couple of local support group meetings but I don’t think I was quite ready because I don’t think I had come to terms with the diagnosis and what it means. I’m not sure if there was anything I could have done differently in terms of my process of acceptance. It may just be something that takes a little time.
So how have I been blessed by Down Syndrome? I wasn’t sure about this word, since I am not religious or spiritual and it can mean “divinely or supremely favored”. However, blessed also means “blissfully happy or contented” or “bringing happiness and thankfulness”. I am happy in my love for my son, and I am thankful every day for the joy and beauty he has brought to my life. I am blessed to watch his development unfold, I am blessed by his smiles and his hugs, and I am blessed by the change in my perspective and attitude that loving somebody with Down Syndrome has brought me.

Potty progress

I'd like to warn you up front, in case somehow the title of this post didn't, that this post will involve pee. If you'd rather not read about this topic, you may want to skip this post and go peruse food blogs now.
I had despaired of ever making any progress in the potty department. Long, long ago I got a Winnie-the-Pooh potty (yes, yes, pooh potty). Nathan was resistant to sitting to the potty at all, seeming to dislike the feel of the thing. I got the little seat that goes on the big toilet. If anything, this was worse, being high up off the ground. Nathan can't really pull down his own pants and doesn't tell me when he needs to go, so really... it seemed like he was not able or willing to do any of the components involved in potty training at all.
I read a book designed for parents of typically developing kids, and Nathan did not have the readiness indicators for potty training. I decided that I'd back off rather than making this an unpleasant struggle. But how do I know when he's ready? Do the same readiness indicators really apply? I asked Nathan's case worker from Regional Center about how I know about potty readiness and how to work on this. She has offered me a behavioral parent-training class and then the opportunity to eventually consult a behaviorist on this issue (the class is a mandatory first step). Okay. I have actually taught behavioral skills to parents in the past, but I will jump through the hoops. Plus, it's always different (and more complicated, and less objective) when you are thinking about your own kid. So that's scheduled now. In the meantime, one of my online friends recommended a book, Steps To Independence: Teaching Everyday Skills to Children With Special Needs. This is a great book and I highly recommend it. Well, it's not a super fun read, so I highly recommend it to parents of kids with special needs, not to everybody else necessarily.
This book breaks all these tasks down into little steps. It recommended I reward Nathan just for sitting on the potty, nevermind the rest. It recommends a bunch of other things too, but I decided to start with sitting on the potty since he was previously unwilling to do this without crying. I offered a raisin for sitting on the potty. Initially, he'd sit there just long enough to pop the raisin in his mouth, but still-- an improvement. Things got even better when I decided we should sing when sitting on the potty. I made up a potty song. I will not pretend this was my finest bit of writing. It goes like this: "1, 2, 3, 4, 5, 6, 7, 8, 9, 10 -- Nathan's sitting on the potty again, Nathan's sitting on the potty again". Repeat. The song was actually quite a hit, very motivating, and the raisin became superfluous. So for a few days we have had a willingness to sit.
And then last night, there was peeing! And again this morning and this afternoon! So we are getting somewhere. We've got a long way to go, but it's a huge success. Yay for pee!

motor planning

I wrote yesterday about one of Nathan's IEP goals which is for Nathan to be independent and safe on the playground including climbing on/off structures with good motor planning 80% of the time. Thus far, at school he has needed assistance and motivation to use the structure safely. I also wrote that yesterday he used a structure at our local playground totally independently while I stood back and conversed with a friend. Today we walked back to the park (almost a quarter mile each way, with Nathan mostly walking independently and forgoing my hand). He again navigated the small play structure independently:


went through the tunnel



and I thought he was going to go down the slide

but Nathan had other ideas. I advised Nathan that this ladder is NOT a slide and is NOT safe for him.

However, Nathan had a plan:



Truly, I had no idea he could do this. He went back up the steps, back through the tunnel and did it again the same way. Talk about motor planning!

Progress on the IEP goals

I had Nathan's first parent-teacher conference yesterday. It went well and was an opportunity to review how he is doing on his IEP goals:
1) Nathan will be able to use 2-3 objects or toys, demonstrating the use of the object or toy independently 4/5 trials. This goal is in progress and he is enjoying the cause and effect toys. They have modified some toys with a switch he is able to operate so that he can do it more independently.
2) Nathan will complete teacher-directed activities or center activities manipulating the objects to complete the activity with 2 additional prompts 4/5 trials. Goal met. Nathan enjoys many activities especially those involving music, and is encouraged to participate in 2 table top activities each day. Teachers will sing to him as he does his work. If he stops working, they stop singing. (I wondered how they got him to sit and color or paint! Must tell the private school how the public school is accomplishing this!)
3) Nathan will follow classroom routine with no more than 2 additional prompts to transition to a new activity/task. Goal in progress, Nathan needs 4 prompts and staff walking him to the next activity, at times more prompts for table top activity.
4) Nathan will initiate and maintain a turn taking exchange using play or language of at least 3 turns. Goal met. Nathan does this with staff, not peers.
5) Nathan will use at least 20 two and three word utterances to greet, comment, request, negate and question, as measured by a language sample taken in the classroom. Goal met. "Nathan uses a variety of 2 and 3 word utterances in play or routine familiar situations. He often needed to be prompted such as reminding him to say 'I want'. He was beginning to use more of them spontaneously." YAY!!!
6) Nathan will follow at least 10 novel 1-step directions given without visual clues. Not met. Nathan follows familiar directions as part of the routine and sometimes novel directions if they are part of a preferred activity (for example, sing a familiar song and then as part of the song, give novel one-step directions, such as to touch various body parts). It's hard for anybody to discern how much Nathan just doesn't want to work on this goal versus a lack of understanding of verbal directions. I think he understands 1-step verbal directions when he likes the direction (bring me "Bear Hunt").
7) Nathan will use utensils and an open cup to self-feed during mealtime when appropriate, when given moderate visual and verbal prompts 4/5 trials. Not yet met, progress noted. He's using a spoon, getting about 70% of the food in his mouth. Drinks small amounts from an open cup but generally does not place the cup back on the table but hands it to an adult (this is a vast improvement from throwing it).
8) Nathan will demonstrate improved coordination and balance by the ability to jump 3x, kick a ball 10 feet and propel a ride-on toy 15 feet. In progress. he'll kick a ball when holding teacher's hand, has not started jumping but will bend his knees when cued (I did not know this) and will propel a ride-on toy a few feet.
9) Nathan will be independent and safe on the playground including climbing on/off structures with good motor planning 80% of the time. In progress. He avoids the playstructure unless encouraged, needs assistance. Yesterday at the park, though, Nathan climbed up the play structure, through the tunnel, and down the slide by himself with me standing a good 30 feet away talking to somebody, so clearly he can use play equipment independently and safely.
10) Nathan will walk up and down 3 stairs with a reciprocal pattern using a railing 4/5 attempts. In progress, he's needing support for both hands and using a non-reciprocal pattern. He will reach for the railing and sometimes turn sideways and use the railing for both hands.
So-- lots of progress in all areas, and some of the goals have been met. Good conference, seems like he's doing really well at school. He doesn't always show them all of the skills he shows off at home, but when I email and tell what he is doing or saying at home, that is incorporated at school (note the "I want" in the speech goal), and sometimes he is doing things at school that he is NOT doing at home, such as bending his knees when cued to prepare to jump!

Expectations

I was thinking about my journey in coming to terms with the diagnosis of Down Syndrome. Initially, I paid attention to milestones and was so excited if Nathan hit something close to on time. And he did in those early months. While I was devastated by the diagnosis, I was convinced that through good parenting and early intervention we could make my son "high functioning". I was thinking in terms of IQ. I know that people with Down Syndrome have mild to moderate mental retardation, and so I assumed of course my son would have mild mental retardation, not moderate. Since mild mental retardation is defined as an IQ of 50-70 with corresponding deficits in adaptive functioning, I figured my child would have an IQ around 70, you know, still technically fitting into that category but at the top there. And then given the great environment we were providing and the speed with which we got started in early intervention, I figured we could probably raise that IQ another 10 points or so, and plunk him into the "borderline intellectual functioning" range of intelligence. Wow. I just reasoned my way out of one of the main features of Down Syndrome. Except...
Except that there's no real reason to think that my kid is different or better than anybody else's. No real reason except the hope for this, used as a coping strategy. Over time I've seen that my child does have global developmental delays. He's been tested by various professionals at various times and the scores (usually given in terms of an age in months) were heartbreakingly low. It became clear that even if the tests don't measure everything and he doesn't show off all of his skills when he is being tested, my son has not escaped the cognitive challenges that come with Down Syndrome. It's clear too when I step back and observe his "adaptive functioning". My 3-year-old doesn't use a fork, can't pull up his own pants, can't reliably tell you his name when asked, etc. etc.

Before I embarked on this particular parenting journey, I held IQ and other standardized measures of intelligence or achievement to be pretty important. If cognitive functioning was important to me in how I judge a person, and I was beginning to realize that I very much love somebody who has below average cognitive functioning, how did I reconcile this cognitive dissonance?

I changed my values and my focus. I came to realize that intellectual functioning isn't the be all and end all. I came to value my child's strengths, to revel in his accomplishments, to avoid comparisons to anybody's charts about milestones, and to avoid comparisons to other children with and without disabilities. This took a long time and of course sometimes I need to be reminded still. I do have to see the challenges and areas that are not so strong so that I can motivate him to try and to work on these areas. I see that he will give up at times rather than persist when a task is hard, and he needs encouragement to try and help to be successful and build on success. But more than anything I focus on the strengths and the new abilities that unfold. I try to compare Nathan today only to Nathan yesterday, to see the growth and the change, the emerging abilities. Development happens, and there are things we can do as parents to help, but having expectations about the when and the how doesn't help. Having a sense of wonder and the ability to stay in the moment does.

Return of the Blogger

After blogging 31 days in October, I guess I needed a break! All that blogging coupled with the fact that the end of October and beginning of November have been a bit rough for me means we're into the second week of November and I haven't written a thing. I'll go ahead and remedy that now.
I've not been at my best, but Nathan's been great. The Fall flus and colds have not hit him yet and he's just been a happy, active kid. He does persist in wanting the same activities over and over again. He's still really into this Leapfrog learning desk toy I talked about before. It has these word cards with pictures on them. You're supposed to put magnetic letters in them, but Nathan doesn't believe the letters belong in the cards at all. If I put them in, he takes them out. He does believe the cards belong arranged all around the desk, not in a stack, so that he can see all the pictures, and he arranges them around himself without too much overlap:

What's neat is that he is looking at the pictures and telling me which word is on the card. I know he's not reading the letters, he's labeling the pictures, but it's still really cool. He can do a bunch of them: "dog", "cat", "pig", "sun", "rug". This toy sounds out and spells the words when the card is placed in the reader. Nathan is beginning to memorize the spellings: he's got "D-O-G" down, but for some reason he generally tells me "C-O-T" for cat. I guess I'll cut him a break, though-- he's only 3!
The bummer here is that while he is proficient at taking cards out of the reader, he cannot yet put them in by himself, so this is a labor-intensive toy on the part of mommy, especially when he wants to hear the spelling of each card in turn.
I'm not so sure that these learning toys really teach anybody anything more about reading and phonics than, say, good old-fashioned books, but he does love this thing.

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!