Reclaiming Thanksgiving

On Friday afternoon, I went to Michaels to pick up a craft project for my nephews who were coming to visit for the weekend. Greg and I were going to the Williams Syndrome Association New England Regional Conference and Sawyer and Gwen’s aunt and uncle were coming down to watch them so we could both go. Since we would see the nephews again at Thanksgiving, I figured I would pick up some kind of Thanksgiving centerpiece for them to assemble and decorate while my little ones had their naps. What an awesome aunt and advance planner I am.

So I walk the holiday aisles of Michaels and see the gingerbread houses, the foam Christmas trees, the make-your-own stockings; yet, nothing remotely Thanksgiving. I walked up and down the same aisle several times. I tried the wreath-making section. I looked in the Halloween clearance. Nada.

So I go to the only working (sorta) cashier at the front of the store and ask, “Where can I find the Thanksgiving crafts? You know, something with a turkey on it?” She thinks, looks confused, and tells me that she thinks there might be some kind of craft kit with autumn leaves in the Halloween clearance, but otherwise there was nothing else she knew of since they were “Christmasfying” (her word) the store.

That’s right. Not one stinkin’ turkey in the whole joint. No pilgrim hats or Indian…er, Native American headdresses. Not even a cornucopia.

Now, I love Christmas: the glitter, the smell of butter cookies, gaudy lights and jaunty music. But must we push aside the wonderful national holiday of Thanksgiving? The humble, yet incredibly stupid and easy to catch turkey dies by countless numbers to be frozen, halfway thawed and cooked into an arid state by millions of grateful Americans. But Thanksgiving is being whitewashed from our iconography into simply the carb-loaded dinner before Black Friday.

We need a national movement to reinstate Thanksgiving as a thematic holiday of importance. So, folks, help me start by reclaiming the wholesome fun of Thanksgiving crafts. Rediscover for yourself the joy of sitting around the table wearing paper bag deerskin vests and gluing multicolored feathers on pinecone turkeys. Try to explain to your children what a “cornucopia” is and why anyone would want to shove a bunch of food into a horn. Make placemats for all of your guests by tracing your hand on construction paper and drawing a turkey beak and waddle on the thumb. If Michaels won’t sell the pre-fab foam, some-assembly-required centerpieces, then we will do it old school. Dig out that Elmer’s glue and your crayons and get your recession on. It’s not cheap and crappy… it’s retro.

Too many of our days are spent looking ahead. We need to enjoy being in the “now” and experiencing the slow laziness of a Thanksgiving Day with friends and family. Talk more about the important things, play with the kids on the floor, linger over dessert. Time goes too quickly, and now we seem to gloss over the Thanksgiving holiday as stores pull their Halloween displays a week before Trick-or-Treating to make way for fruitcake and candy canes. Let’s just slow it down and enjoy every second of November before the busy season of cookie baking, present wrapping and party-going hits us full force.

Reclaim the holiday of Thanksgiving, give props to the turkey and save the gingerbread houses for December.

P.S. Click here for a little inspiration.

October Highlights

We went with some friends to a local farm where you can pick your own pumpkins. We didn't realize the patch was out in the boonies so you had to take a tractor to get there (and the hayrides are only for school kids during the week). We bought our pumpkin at the farmstand, but Sawyer fell in love with the big green John Deere pulling the hayride.

This was Sawyer's first Halloween for Trick-or-Treating. He went as a race car driver and I pushed him around to our neighbors in his red Little Tykes car. He was pretty done after the first house where he got a sucker, which he didn't let go of the whole night. Gwen is wearing the puppy dog costume that Sawyer refused to wear last year. She wasn't much for it, either.

Can you believe that our baby girl is six months old? It is funny how it seems like yesterday that we brought her home and yet I can't remember life without her. Sawyer is beginning to realize that he has an adoring fan. He still gets upset when she cries, but he is learning that he can help make her better. I have found her with toys a few times that I think were given to her by her big brother. If she were a cartoon character she would have big hearts floating around her head every time she sees her brother. Which always amazes me since he shows his love by roughly patting her head and then trying to pull her hair. Someday, and by her size someday soon, she will knock him on his butt when he does that.

Although this happened this past week, I couldn't post without mentioning Sawyer's first concert: The Wiggles!! I was concerned at first that Sawyer wouldn't sit through the 1.5 hour performance or that the number of loud kids would aggitate him, but he LOOOOOOOVED it! And I loved it, too! Captain Feathersword and Anthony are pretty buff: who knew! We went with our friend, Brady, and his mom, Kerry. I wish I had a picture of the two boys together, but it was past bedtime when the concert ended and Sawyer was not in a picture taking frame of mind at that point of the night.

Tomorrow is the New England Region WSA conference and Greg and I are both going. We are looking forward to all of the great information as well as seeing our fellow Williams Syndrome parents. So, see some of you tomorrow!

Privileged

Disclaimer: The following is my opinion on the H1N1 vaccine. I am not looking to debate: this is my take on the topic which has been the hot ticket lately in every circle I belong to. It has been on my mind, and I wanted to share my thoughts.


When I was in graduate school I had to take a class on multicultural art education. One of the concepts that was discussed was that of "white privilege": that by being born white in America that I had an unfair advantage over people of color. The notion of "white privilege" annoyed me; after all, I didn't feel very privileged when I had to take out student loans and work my way through college. But by the end of the course, I could see the point: people don't automatically assume I am a welfare mother when I am wearing sweatpants to the grocery store with my two crying kids in tow and they don't assume I am going to mug them when I pass them on the street (or who knows... maybe they do). But by being white in America, I do have advantages and choices that people of color may not have.

I have realized over the past few weeks that we are a nation of medical privilege. It is a weird term to apply when we are in the midst of the biggest health care reform this country has ever seen. Here is what I mean by it:

In many third world countries, children die of diseases we haven't seen in decades: measles, mumps, diphtheria. The poorest people in the poorest countries bury their loved ones every day because they don't have the option of getting a vaccine. They may not have the money. They may not have a doctor within 100 miles. They don't have a choice between whether or not to inoculate their children. They bring their babies into the world, pray to their gods and take their chances. And, in many cases, suffer the crushing loss of their babies, their spouses, their siblings and parents.

We have the privilege of living in a country where we can decide not to inoculate. Where we have the science, and the industry, and the access, and the money, and we can still choose to pray to God and take our chances. We can get our flu shots at the doctor's office, at our supermarkets, at our corner pharmacy. I won't be surprised if Dunkin' Donuts holds a flu clinic.

There is a myth in Africa that some desperate men buy into that they can cure their AIDS by having sex with a virgin: often a child. When I hear of these things, I shake my head that so many people in our world believe in magic over science. That instead of taking a drug that can manage their symptoms or engaging in preventative measures, they believe in harmful falsehoods. Actions that only inflict further harm on themselves and society. But I ascribe this to ignorance: a lack of knowledge and understanding.

Yet, in this country where we have libraries and colleges and PBS and the internet where we have information at our fingertips from the Centers for Disease Control and numerous other reputable agencies-- yet, people want to believe in myth. They want to believe in conspiracies. They want to believe that potentially deadly viruses can be staved off with taking vitamins and sitting under sunlamps. They believe that inoculations are somehow worse for you than contracting a strain of the flu that has killed 1000 people so far in our country alone.

I am dumbfounded by Americans who refuse to inoculate for the swine flu. I am married to a guy with a Ph.D. in pharmacoepidemiology. If you haven't met Greg let me tell you a few things: he can remember minute details, he receives and reads many articles on drugs and interactions, and he would never allow our children to take a drug he thought could be harmful. When we were offered the H1N1 shot with thimerisol, Greg assured me that the shot was safer than chancing that Sawyer gets swine flu. If you don't trust thimerisol, then wait for the preservative free shot. But get the shot. If your kid has Williams or not, get the shot.

I am trying to separate out my anger over someone on a listserve I belong to who posted the site of a snakeoil salesman, holding it up as reputable, and my own dismay over the fact that getting the shot is a debate at all. I am angry that there are "doctors" online who prey on parents with children who have special needs, offering a simple fix to a complex problem by prescribing fish oil or vitamin D. I am not saying that I don't believe that vitamins are good for you: I just don't think they cure autism or prevent the swine flu. And I am disturbed that people know that this is a pandemic flu, that they can easily prevent it and, yet, won't. We live in a society that can offer an easy prevention to death, and some people won't take it. I find it unbelievable.

While I believe that we have to be careful about what we put into our bodies, we also owe a responsibility to society and that includes doing our part to ward off pestilence. The same people who would pick up litter or give money to a homeless person because it makes the world a better place are sometimes the same ones saying they won't get a simple shot. If someone wants to commit themselves to fate and the chance of getting the flu, I usually say "it's your health." But I have a child with underlying health conditions, a husband who works in a hospital, and a baby too young to inoculate. Not to mention me, otherwise healthy but with mild asthma. Where a healthy person might be able to fight off the H1N1 virus, their elderly neighbor might not. Their pregnant friend might not. The baby of the fast food worker who took their money might not. And a person with mild asthma might not.

It could be my loved one or yours.

As the parent of a child with special needs, I put my faith in science when I take him to his doctors. I put my faith in science when I support organizations that fund research in gene therapy. Why wouldn't I put my faith in science now, in a system of preventing disease which is proven to be effective?

I wonder about the mothers in Africa and Asia who can't give their children a flu shot. I wonder what they would say if given the option to prevent disease among their children. And I wonder what they would think about us Americans, who have the opportunity and, yet, some turn it down.

Sawyer has had his shot: he will need a second one in a month. My next goal is to get one for Gwen and then, for myself. Despite my nearly obsessive hand washing and use of alcohol gel, we all came down with colds last week. Gwen ended up needing an albuterol nebulizer for what may be early indications of asthma. If we can catch colds despite our best efforts, we could just as easily catch the flu. In the meantime, we are avoiding many of the places we usually enjoy: the YMCA, children's museums. I couldn’t live with myself if I caused harm to my family by not using caution.

We are a medically privileged nation that we have a choice about whether or not we prevent disease. Please choose responsibly.

All Politics are Local

Just thought I would share Greg's response to the Republican National Committee's more than biased and leading "survey" they sent to him. Politically, Greg is a Republican and I am a Democrat, but both of us lean towards the middle on most issues. And neither of us like it when our parties demonize the other side. The bottom of the paper says, "DO NOT DESTROY" so Greg returned it with his personal opinion on their survey.

Feel Good Moments

If you recall, I was the most excited winner of an Elemental Memories Gratitude Bracelet a few months ago. I finally received my most wonderfully handcrafted piece of jewelry a few weeks ago and have been wearing it almost non-stop ever since. I love it LOVE it LOVE IT! If you are looking for a wonderful gift for Christmas/Mother's Day/birthday or just because the woman in your life is sheer magic, but sure to pick up one of these. Or, ladies, buy your own and delight in seeing the faces of your loved ones dangling from your wrist (er... but not in a Silence of the Lambs kind of way).

As of Wednesday, October 7th, Greg and I have been married 9 years. A few months ago, I learned that a favorite radio show, "Wait, Wait, Don't Tell Me" would be recording in Boston on the 8th and I went online to buy tickets. The best seats I could find available were practically in the rafters, so I knew the show was nearly sold out. Without consulting Greg, I bought the non-refundable tickets and thought I would surprise him. The surprise was on me when I went to write the date on our calendar and saw that Greg had marked out the week for being in San Antonio at a conference. So much for best intentions. But, my inlaws were able to babysit so I arranged to meet up with a friend for dinner and the show.

That morning Sawyer had one of his physical therapy sessions. I really like his therapist overall, but today I received a mini-lecture on redirecting Sawyer's negative behavior with positive actions (i.e. don't tell him "no"). And while I don't necessarily disagree with her, when he is in the middle of a potentially dangerous activity -- in this case, climbing on top of a table-- I give him my no-nonsense voice and tell him to stop what he is doing. I don't know when telling your child "no" became akin to beating him with a leather belt, but apparently I stepped outside the accepted laws of good parenting and received a talkin' to. In my own house.

And while I cognitively knew that I should let this roll off my back, it just ate at me all day. A college friend once told me that no one could kick me in the ass like I can, and I spent most of the day recounting every infraction that makes me a substandard parent and human being. I feel that one of the hardest aspects of being a full-time parent is the whole lack of positive feedback on your parenting skills yet absolute piles of unsolicited advice on how you can improve. And especially when your child has special needs, you always feel like a failure when they are slow to achieve a goal. Maybe if I did this or made time for that or signed him up for underwater basket weaving therapy he would climb the stairs/say my name/use a fork. Getting nothing but advice without any kind of praise for weeks and months and years is, well, depressing.

I drove to the Quincy Adams train station to go into Boston. While lost in my thoughts on the platform I see a young woman walking towards me. I recognize her as one of my Teen Docents from my days at Fuller Craft. I administrated an after-school program for at-risk teen girls in Brockton where the girls used the art in the museum as a springboard for discussions on gender issues, healthy lifestyles, goal setting, etc. The teens then mentored 4th and 5th graders on similar issues. It was a great program that unfortunately was a victim to the post-9/11 economic slowdown and Bush administration. Grant funding that used to be for pregnancy prevention, girl-centered programming and after-school programs disappeared to be used for No Child Left Behind programs. I had to end the program not long after M___ graduated.

We talk while on the train: she is now a nurse and graduate student, studying to become a nurse practitioner in the field of psychiatry. She caught me up on some of the Teen Docents and where they were in life. But what really made my day, week, month was when she shared what an impact the program had on her life: how she wrote an essay on the program to get into UMass and how much it meant to her to be at the Museum most days after school. Knowing she was doing well in the world would have been enough for me; but having her tell me how my involvement in her life had a positive impact just sent me over the moon.

And while I had a fantastic night out to dinner and a show with a good friend, it was those few chance moments on the train that really made my heart soar.

Yum! Yum! Yum!

It is hard to believe that summer is over and the trees are beginning to turn. I love Fall and the crisp nights with mild days. I enjoy the fall activities of apple picking and carving pumpkins and all of the tasty apple and pumpkin baked goodiness. We went apple picking last weekend on a perfect fall day at the Barden Family Orchard in N. Scituate, RI. We found the orchard by accident and good fortune several years ago and have been making the drive out there ever since. Sawyer recently discovered apples and it was a challenge to keep him from trying to eat all of the ones on the ground. As you can see, he was a devoted taste tester of each variety.

We are increasing Sawyer's speech therapy starting this next week, and I am applying to a local riding stable for hippotherapy which will hopefully begin before it gets too cold outside. The video below shows some of the recent progress he has made with being able to make certain animal sounds.

At Gwen's last doctor appointment she weighed in just under 18lbs, putting her in the 98th percentile for weight and around 88th for height. She is able to sit up on her own for short periods of time. Her biggest problem is that she wants to grab anything remotely in reach, so she lunges and, consequently, topples over. We are starting her on rice cereal and baby food. She does fairly well with eating from a spoon although he also tries to eat the bib and her fingers at the same time. As you can see below, she is quite independently minded and wants to do it herself. I have a feeling that when she is finally mobile that we are in BIG trouble.

Lab Rats

So are wrapping up being in TN with my folks for a long stretch. I haven't been home since last Christmas, so it is great to catch up to so many friends and family and show off Gwen. I feel like I have spent the whole trip running to see this person or that and what seemed like a long trip of 12 days has turned into only a few days of actual down time.

While visiting my parents, I scheduled Sawyer to visit Dr. Mervis at University of Louisville. Dr. Mervis is a researcher in neurological developmental hoodalehoo and, notably, operates an ongoing research study on language development in people with Williams Syndrome. In return for offering ourselves up as lab rats for two days, Dr. Mervis provides feedback on Sawyer's development, reviews his current therapies and gives constructive advice on how to encourage more progress from him.

So, I rented a car and drove us up to U of L. Last year, I had the double misfortune of visiting during the Ryder Cup and Hurricane Ike, so there were no hotel rooms to be found and no electricity to boot. This year, I wanted somewhere comfortable where we could decompress at the end of the day. For our WS friends: we stayed this year at the Hilton Garden Inn at The Summit, which is about 16 miles from campus, but an easy drive by interstates to get there. It is a great area of town with about every restaurant and clothing store you could want and a big movie theater not far away. CostCo is also really close by which was handy after I managed to have not one but TWO portable DVD players break during this trip. If you don't mind a 20 minute drive to UofL in the morning, I give it a thumbs up for quality and location. The hotel also had a pool and free cookies at the desk, so Sawyer gave it two chocolate-covered thumbs up as well.

Mervis' tests are largely play-based, with her assistants playing with Sawyer while observing his communication abilities, and also some cognitive tests such as hiding a block under a towel to see if he can find it, having him stack blocks, seeing if he will play with a doll, etc. In the meantime, I am either in the room with him or observing from behind a one-way glass. I appreciate the opportunity to participate in Dr. Mervis' study as she provides useful feedback for me and it helps "the cause" for other parents in the future; however, I did have an out-of-body moment the first day as I watched Sawyer from behind the glass and despaired "is this really my life?" I had to fight the urge to run into the testing room, snatch Sawyer out of there and burn rubber out of the parking lot. It isn't easy to see your child as test subject #WS61500. But, frankly, Sawyer has no problem getting to play for two days with pretty, long-haired co-eds, so I got over it quickly.

Then, I get the chance to be a lab rat. Mervis has a study into anxiety disorders among mothers of children with WS. As evidenced above, I have my moments, but their study evaluates for over the top, maybe-you-should-let-me-drive kind of crazy. So as I sit on the comfy couch in the Psychology department, a really nice grad student goes down her list of questions with me:

"Do you see things that aren't really there?"
"No."

"Do you hear voices?"
"No." (Although I REALLY wanted to reply with "Let me check... uh, they say 'no'.")

"Do you have Satanic thoughts?"
"No." *snicker*

Yeah. I snickered. And then I apologized. I mean, c'mon. Can you blame me? I can only take this stuff so seriously for so long before something has to blow. I guess you can blame The Dark Lord for his influence.

We also participated in some studies that involve tracking Sawyer's gaze at different faces and something to do with spinning objects and gibberish words. I hold Sawyer in my lap while we watch images being flashed up on the screen. Again, I kind of lost it after about five minutes of watching a moving icon coupled with the gibberish word "Kaaz" and a blinking, dinging green ball. Someday, someone will ring a bell and I will turn into a zombie assassin with a mission to destroy Rachel Ray or something. I think these people are doing some interesting work, but I have a hard time being a lab rat myself.

At the end, Dr. Mervis sat down with me to discuss what they saw. While Sawyer made a lot of gains this past year, he is not as far as long as she expected which was disappointing to say the least. She recommended hippotherapy to build up his core muscles and his confidence and she gave some other nuggets of advice which we will try to implement when we return to Massachusetts. If nothing else, these annual visits give me a chance to step back, get a clear vision of where we need to go, and recommit to some of the strategies we have been doing but which have fallen off or have gotten sloppy. I didn't realize how tense I was until I stood up to leave and my thighs had knots in them. Dr. Mervis surprised me with a hug on my way out which made me feel a little less like a lab rat and more like a human being. She gave me one important piece of advice before I left: to find opportunities to teach him that are fun for both of us because he is my little boy, not my project. I need to embroider that on a pillow or something.

So, we have one more day before we return on Tuesday and then it is back into the swing of things. Sawyer will start a separation playgroup to prepare him for preschool and we bump up speech therapy to twice a week. Oh, and the horses. And maybe a music class. Or swimming. The possibilities are endless.