Buddy Walk & Advocacy

This year was Jules's second Buddy Walk, and it was so much better than the first!  Last time, it was just the three of us, but this time, we had Jim and Patty drive all the down from Charlotte and back (in one day!) to be there.  And we knew people, like Julia's therapist Beth, who stopped by our tent:

That was us:  "Fools for Jules."  It was actually one of my first art projects for Julia, which is why it looks like it was drawn by a child.  Nonetheless, it was a great time of family: both our immediate family and our new and ever-growing Down Syndrome family.

And this is the reason for this post.  In the spirit of advocacy for Down Syndrome Awareness Month, I attended a Webinar put on by the NDSS (National Down Syndrome Society) and the DSRTF (Down Syndrome Research and Treatment Foundation).  The latter is a lesser-known organization that funds research, partly through having a marathoning team (which I'll be joining when Julia is older and can come with me to Disney World!).

So please grab a cup of coffee or an alcoholic drink (is it after 3 p.m.?), and get ready to read my somewhat copious notes about the webinar.  I'm hoping that we can all learn something without all of you sacrificing an hour of your precious time~

The first thing I learned is that mice can have the equivalent of Down Syndrome, but instead of T21, they have an extra chromosome on their 65, so they are called Ts65Dn Mice.  They have similar facial features, shorter necks, and shorter limbs, just like humans:

Cute, huh?  It's like a Corgi mouse :).  Anyway, the interesting part is that they also have issues with spatial orientation, learning, and memory, and that scientists located these in the hippocampus of their brains--I don't want to know exactly how, since it probably involved the death of these Corgi-mice.
They also realized that the cerebellums (cerebelli?) of these mice are, like those of humans with DS, quite small.  Here's a great website that explains brain functions: http://serendip.brynmawr.edu/bb/kinser/Structure1.html.

In relation to the cerebellum size, the Arizona Cognitive Test Battery was performed on young adult mice, who took time out from drinking and partying to help out the cause.  They actually came up with a drug to restore the size of the cerebellum, but it was turned down by the NIH.  The exciting thing about this study is that, once cerebellum size was restored, the mice could do the same stuff as normal teenage mice.  The other exciting thing was that these mice were not babies, and that brain function could be impacted even later on in age.

A different, but no less important, study found that a specific set of neural connections is out of place in the Ts65Dn mice.  We all of excitatory and inhibitory stuff in our neural pathways, and mice with DS have too much of the later.  If scientists inhibit the inhibitory neurons, they can restore electrical conductors.  In order to inhibit said neurons, scientists used a drug, PTZ, and treated a mouse model.  In this article about PTZ, authors also mention side effects like severe seizures (effects that the webinar speakers conveniently left out).  They've started clinical trials of PTZ in Australia, and it seems successful; in fact, performance keeps improving for 2-3 months even after the drug is withdrawn.  So the big question is "how will this affect adaptive behaviors in humans?"  In other words, how will nature and nurture interact here?

I don't know how I feel about these drugs; I'd like to learn more about their side effects and make sure they are safe, but the prospects seem quite exciting!

The second part of the webinar (grab another coffee/drink here) was about advocacy.  There are five branches of action that the DSRTF is focusing on:
1) Drugs like PTZ and the cerebellum-growing-one
2) Sleep (??)
3) Behavioral Neuroscience
4) Alzheimer's - we'll get back to this in a bit
5) FUNDING.

An 8% across-the-board funding cut to the NIH has really hurt the congressional momentum of DS advocates.  Although DS has support across the aisle, there are many things that people can do.  The NDSS is working on establishing a patient registry; offering competitive grants for 6 Centers of Excellent (one of which should, I think, be in the Lowcountry!); fostering dialogue through the NIH DS consortium; and addressing Alzheimer's in collaboration with DS (since people with DS are highly likely to develop the condition).

How can you get involved and help people like Jules?  Check out the NDSS Online (link above); if you sign up, they will send you advocacy alerts.  I just signed up, and it took 1 minute (literally) of my time.  You can also join the DS Ambassadors Program, which builds liaisons between congressional delegations and the DS community.  Finally, you can attend the Washington DC Buddy Walk, which features an Advocacy Conference.

If you're reading this all as an adult, Jules, sorry it didn't sound much like a letter TO you, but I'm sure you will be involved at this point.  Hopefully, you can look back on this and read about the huge amounts of progress that have been made, not only in research and "treatment," but also in human treatment: in acceptance and inclusion.

And if any of you want to listen to the actual webinar, it's available on the NDSS website.  I wish I could post every day for DS awareness month, but I'm super busy with work and raising you, Jules...so I'm just writing more instead!

WALKING!!

We are beyond excited.  Every day, you walk a few more steps; on Friday, you walked 8 steps total.  Well, today, you walked five in a row.  This is sooo huge for us.  We have been doing treadmill training with you for about 6 months now, and I'll have to videotape it for here.  But here it is: the videotape of you taking your very first steps:

And just in case any of you want to read about treadmill training and its benefits--if you're not convinced by our 20 month old practically walking!!--see this article.
I want to definitely write about the Buddy Walk, but I'll save that for tomorrow.  This is so huge that we all just want to savor it.  Love you!  Mom

Ellieotte Carol Burch, my BFF

   This is from forever ago, and Elliotte is a big girl now- I'll have to find an updated picture!!

Please Comment!

Dear Jules,
When you read this--when you're older and interested in such things--I really hope that I can also share with you comments from your family and friends.  So if you're reading this blog, please please take a minute to comment!
I will be posting soon, as the Buddy Walk is this upcoming Sunday!!  We will be going, fo' sure, and Grammy and Papa are coming down from Charlotte for the day.  I'm also trying to get some more of our friends to come out.  And you'll be meeting Trent, someone I've only met online but whose mother, Elizabeth, has become my facebook friend.  Trent is only a few months younger than you and also has DS...and looks like such a cutie.  I absolutely cannot wait, and I know I'll have more pictures to share.
In honor of DS awareness month, I'm trying to post every day (ha!).  Well, as often as I can.  And so here's another cute picture of you, hamming it up as always:

Crawling! Fast!

Once again, it has been an inordinately long time since I have blogged.  We went to Hungary and had a really nice trip; instead of doing marshmallows over a blazing fire, Hungarians like to cook bacon, drip the fat on bread covered in onions, and eat it.  So here's a picture of you participating in this activity.  I must say that you really enjoyed the fire!  Here you are with Daddy, Laci Bacsi, Zsuzsa Neni, and Nagyi:

When you were in Hungary, you were still figuring out how to pull up.  Soon after we returned, though, I called ECDC, the College's pre-school, and learned that it would be at least two years until you got in there.  Even though I would highly recommend Loving and Learning, where you were at the time, they wouldn't move you up unless you were walking AND drinking from a sippy cup, and you ended up in there with 6-week-olds. 

After much consternation and many interviews, we ended up deciding between two really good, but really different schools.  It might help others to know why we made the decision we did, so here it is.  Trinity Montessori is an excellent school, we loved the teachers, and they were the only traditional pre-school really excited about having you as a student.  Most of the schools I called were very excited about having us as customers until I mentioned that you had Down Syndrome, at which point it became "oh...I guess we can handle that."  This didn't overwhelm me with confidence, but the people at Trinity were so different, so invested from the start.  Your friend Maybelle went there for a year (see Maybelle's mom's blog:  piepmeier.blogspot.com).  I even talked to this woman, my colleague, about her decision, and she told me she was a big proponent of inclusivity, the school worked really well for Maybelle, and that she was walking within two weeks.  

But we did not end up picking Trinity, and therein lies the story.  While I'm also a huge proponent of inclusive education and fully expect that you will go to local, non-special-needs schools, I also thought a lot about you and your personality.  You (at least at this point in your life) are a bit shy, reserved, and not willing to "get in there" and take what you need.  I was worried that the de-centralized Montessori method would not allow you to have your turn, as it were: that the other students would get ahead of you and leave you out of the game.  I also know that you thrive on structure; who else gets up at 7:30 every morning, even in Hungarian time?  So we ended up at the Charles Webb Center: http://www.dsncc.com/Charles%20Webb%20Center.html.  I really agonized about this, but a woman on the babycenter.com board finally said what I needed to hear: that I needed to do what was best for my child.  It has been an amazing experience for Jules; they work with her on standing and on walking every day, and I've watched my daughter become more and more mobile before my eyes.  Here, if I can get it on, is a video of her going after our Cardigan Corgi, Puck:

If that link doesn't work, check out:

https://www.dropbox.com/s/liway9dygvfq8jl/2012-08-28%2004.44.22.mov

Catching Up

Today I'm in the process of catching up on many things:  my laundry, my yard, this blog...if you should ever become a teacher, Jules, remember that it's all-consuming and takes over your life.  Kind-of like parenthood, I guess, except that at least we have daycare for you!  Maybe we need daycare for college students...

The last time I posted was November 20th, and the post didn't even make it up on here, so that's a lot to catch up on.  Let's see if I can try.  By November, you were sitting up, fully, and very proud of it.  In fact, still, every time you get up on your hands and knees, you revert petulantly into a sitting position.

This is one of our favorite pictures of you, with Daddy, at the Thanksgiving Day parade.  By this time, you didn't even really have to hold on, but his hair is irresistable!  I love that you're looking one way, dad is looking the other, and there's a "one way" sign in the background.  Sad to say, that was the highlight of that particular parade.  Thanksgiving itself was a bit different this year; we went to one of Grammy and Papa's neighbors' houses, so it was definitely more rowdy.  Nice, though.  Everyone loved you, of course.

Christmas was lovely: your very first!!  I did take lots of pictures but haven't put them up here, so here's just one:

It's my favorite, of you and Daddy putting the star up on top of the tree.  With the help of Miss Beth, your OT, you had started grasping for more things and were able to hold it, but with help.  Now you could fling it across the room (but that will come later!).

In January, we celebrated your first birthday!  Look at you sitting up so perfectly!  You always did have the best posture--in fact, you generally don't do anything until you can do it well, a fact about which I'm both proud and worried.  You know what?  Don't worry so much about being perfect.  The truth is, NO ONE IS.  We are all flawed, we all fail, but the true definition of courage is the ability to get up and try again.  And don't let anyone tell you differently.

So what did we do in February?  Let's see.  You were sick for most of it, unfortunately, but here's a sweet picture of that perfect sitting up I was talking about!! In March, you had your adenoids out and tubes put into your ears.  A routine surgery, but I was still nervous about the anesthesia.  You got through it like a champ, though, and rocked those hospital blues, as Grammy would say:

We spent March getting over the surgery, and then you had a sinus infection.  After that, you were still congested, so they finally prescribed you Flonase, twice a day.  This might seem extreme--the pharmacist was particularly judgmental about it--but it has helped so very much.  So in April, you were able to celebrate Easter in style:

Grammy came to spend Easter with us, so I'm actually in the picture.  Here's a picture of you and her:

And look at you eating your solid foods!!  I can't believe how much you've grown since October.  Last but definitely not least, you've been playing at crawling, but your real goal is to pull up and walk.  I have this great picture of you in our papasan, trying to crawl.  Look at it and compare it to the picture of you when you were two weeks old, lost in that big chair:

It's pretty amazing how you've grown, changed, and just blossomed.  Mama is so proud of you, Jules.  Now that I'm almost done grading (well, that's an overstatement, but it WILL happen), I can post more over the summer, when you go and meet your family in Hungary for the first time.  DS awareness in Hungary, here we come!!

Ten Things I learned...

**This is from earlier, in November, and it never got posted.

From my 11-month-old (today!!).

1. Never, ever give up. Things might take longer, they might be more difficult than you thought they would, but they will, with time and effort, happen. If one wants to suck one's toes, one eventually will.

2. If you're open to giving love, you'll get love back. I've never met a person who didn't love Julia.

3. Embrace the joy of life. Joy and wonder are two of the elements that characterize both childhood and the holiday season. How sad that, as we get older, we trudge through life and often lose both.

4. Be yourself. That is what makes you so radiant and compelling. Trying to be anyone else is futile.

5. It's not always loud people who win out. Julia is probably the most quiet child in daycare, and/but everyone just adores her.

6. Practice foregiveness and grace. We hold on to so many things as adults: things that keep us from relationships, from spiritual freedom, from living the life we were meant to live. If I bonk Jules on the head by mistake, she knows I didn't mean to and lets it go.

7. Family is important. Often, we forget how much our parents did for us until we ourselves have a little one. It makes me grateful for all of the gifts I've been given, and I hope my family (both immediate and by marriage) knows how much I treasure them.

8. It is okay to be "slow." It just means you're taking the time to do things right.

9. People are less judgemental than I thought. Every day, people surprise me, not just with their kindness, but also with their acceptance. Often, I learn that it is I who was being judgemental of them.

10. Take a leap. I was so scared when we decided to have a child, and even more scared when I found out that our child is "different." But that Nike slogan holds true: "just do it." I've learned that most of our fears, our anxieties, our feelings of inadequacy, go away when we take a leap, whether it be in career, in marriage or, in this case, in choosing to have a family. There is no wrong path, and we learn invaluable lessons from every path we choose.

That's all for today, but I'll be posting soon about Julia's very first Christmas and, then, about her first birthday! How time flies.