31 for 21: I'm not late

I'm fashionably delayed.  :-)  October means blogging for 31 days in honor of Ellie's enhance 21st chromosome. I like the idea of it super lots, but, of course, hate the discipline that it entails...note starting on day 6.  Hopefully, 31 posts will have to suffice since I have some thoughts about politics....that's for another day.  Meanwhile...enjoy the Patch Girls!

From April

From today (10/6)

No Twisted Panties

Here's how my brain works.....
I want to do 31 for 21 and in fact enjoy writing and blogging about our lives.
I commit to 31 for 21.
I miss a day (or four).
I beat myself up and feel guilty.
I decide I will make up all the posts.
Live is crazy busy and catching up seems overwhelming so I avoid and do other things (Hello Airport Mania!).
I feel guilty and think about not blogging or catching up...alternating these steps ad nauseum.

So....here's the thing.  Work has been crazy busy, our lives have been crazy busy, sometimes by the end of the day I'm not interested in talking any more and just want to veg out. Sometimes I suck it up an blog, sometimes I zone out. I've decided I'm not catching up unless I find I have more than one thing to say in a day and that I'm going to do what I can to blog for 31 for 21, but the reality is that we have a normal, busy life and that's more a testimony for living a life of normalcy with DS than anything else I can write.

It Bears Repeating

I've written about the R word before. I think other people explain what it means and how hurtful it is much better.  Here's one from Twitter that I saw :    @EndTheWord: Powerful message as a dad demands an apology from @AnnCoulter for repeated use of the #Rword. Join him! j.mp/T2qOsP.

Seriously. It's not funny or smart or even an effective put down anymore. Are you really someone who has to belittle a class of people who have enough challenges to make yourself feel smarter, better, or whatever it is that you think calling someone a retard will solve for you?  All it proves is ignorance (especially if you keep doing it when you've been told it's hate language), a lack of compassion, and (for continued, repeat offenders) a level of spite and meanness that is incredible unattractive in a human being.

More information about the R-word and ending its denigrating use at www.r-word.org/.

Reading

Tonight was much better than I thought it was going to be.  Tony was gone so it was just us girls with me only having about 5 hours sleep and there's an inverse relationship between amounts of sleep and shoutyness (Less sleep = more shouty) and it was a crazy day.

We were ok, though.  At one point, Meredith and Ellie were playing and running around with laughing and squealing that requires smiles and a lifting of spirits.  We studied for Meredith's science test and read Ellie's family book from preschool. (She was so excited to get to our family page...will have to share in another post). There was an inpromptu dance party that was funny (Ellie kept swinging as Meredith and I tried to dance in a circle).  There was Wii cycling and swordfighting.

The best, though,  was having the girls snuggle in after dinner to read a bit, do phonics/sounds. Meredith said she'd read and Ellie will do just about anything if Meredith is doing it so they tucked in and read Biscuit, which Ellie started liking this summer.  I really love seeing how sisterly they can be and really appreciated and needed this moment today.

Returning

It's 31 for 21, a commitment to blog everyday in October to raise awareness for Down Syndrome.  Although my blog has been silent for almost a year (yikes!), lots has happened and I think that writing a bit each day is the least I can do both to help educate about DS, but also just share some perspectives.

October is a busy and interesting month since it's also Spina Bifida Awareness month, Disability Employment Awareness month, and, of course, the juggernaut of breast cancer. I think all these things are good to be aware about. I only wish that they didn't occur at the same time so that the message that disabilities are a part of life would really seep in.

I fully admit that I was ignorant and blase about my awareness of disability and it's impact on individuals, their lives, their loved ones, their caregivers. I knew we get old and slow down. I was taught that people in wheelchairs or who didn't look like me did not deserve ridicule or hate. I didn't know, though, until Ellie was born, how much disability there is in the world at each phase of life.

So many families are impacted at birth, some through accidents later in life, some will care for others with a disability, and the majority of us will experience disability at some point -losing hearing, mobility challenges, etc.- if we live long enough.

So, while I will spend this month talking about Down Syndrome and it's effect in our lives, I think it's important to put it in the wider context of disability as a whole and to challenge the prevailing thoughts; to change the paradigm (and language) associated with those who aren't "typical." Because Disability Employment Awareness month will become important when Ellie goes to seek work; and Meredith and her friends will be at risk for neural tube defects when they decide to have children; and women battling cancer (of any kind...get checked out!) are definitely experiencing (hopefully temporary) disability, but disability nonetheless.

What I've Been Doing

Reading:

Generation X Doesn't Want to Hear It


Open Letter to that 53% Guy

Listening:
PlanetMoney Podcast

The Bugle Podcast (warning, contains lots of swearing)

Watching:


My Redeemer Lives (you will need kleenex) More information about Team Hoyt

(and for more inspiration...you know I love Signing Time, but Rachel Coleman's personal story is pretty inspiring as well.  This post in particular "Strong Enough."

Awareness

October is Down Syndrome Awareness Month.

It's also:

Eye Injury Prevention Month
www.geteyesmart.org/eyesmart/injuries/index.cfm 

Home Eye Safety Month
www.preventblindness.org 

National Breast Cancer Awareness Month
www.nbcam.org 

National Disability Employment Awareness Month
www.dol.gov/odep

National Medical Librarians Month
www.mlanet.org/resources/nml-month/index.html 

National Physical Therapy Month
www.moveforwardpt.com  

Spina Bifida Awareness Month
http://www.facebook.com/spina.bifida.learn

Stop America's Violence Everywhere (SAVE) Today
www.amaalliance.org 

Sudden Infant Death Syndrome Awareness Month
www.firstcandle.org  

Which seems like a lot to get behind in one short month.  This doesn't include the weekly observances or daily observances, such as Mental Health, Walk to School, Stuttering, Latino, World Food, etc. And when I look at the list, I'm for preventing/improving outcomes for all of these, even the juggernaut of Breast Cancer (see The Big Business of Breast Cancer for an interesting look at it).

The important thing about all these days no matter how random they may seem is that there's usually a person who has had their life changed through an eye injury, stuttering, breast cancer, a diagnosis of down syndrome, etc.  I've seen Plato's quote "Be Kind for Everyone You Meet is Fighting a Hard Battle" in various places lately, and this list of observances is a good reminder of how true it is.

Firsts

This past weekend we went to our first Buddy Walk. Just E & I walked as Big Daddy and M had a soccer game. They joined us later for the post walk entertainment (more on that in a minute). I haven't been very involved with the local Down Syndrome group and worry that I'm missing out on some valuable input or information. Or just finding a network of people. But then I go to a mom's night out and don't really care for the other women there and don't readily connect with some of them, so don't go back.

It's my own fault to some extent, but it also underscores the fact that just because we have children with the same condition, doesn't mean we're going to be besties. I'm not friends with mom's who have brown-eyed children either. Having a child with DS only gives us one thing in common. It may be a jumping off point, but so far, for me, it's been like the motorcyclists who wave at other motorcyclists as if to say, "I acknowledge you and approve your mode of transportation," but have no other interaction.

Anyway, so despite not being too involved in our local DS group, we wanted to go to the Buddy Walk this year because Rachel Coleman from Signing Time was the featured guest/performer. I mentioned previously that E signs. Most of her signing has come from watching Signing Time. That's her (left) watching Baby Signing Time at about 18 months. She's progressed through everything they've put out and we're eagerly awaiting new episodes. Given that Alex, Leah, Rachel & Hopkins have been in our house everyday for the last two years, we jumped at the chance to go meet them.

I worried that E would lose her mind seeing Rachel, but she didn't. I think it was because we see her everyday, why wouldn't she be somewhere. What really drew E's attention, though, was Hopkins. He was really fun.

During the performance, E turned away some of the time even though Rachel & Hopkins were singing some favorites that she's asks for - In a House is one E likes to sign before bed, Magic Words was the first song that I noticed E signing/singing along to in the car, Signing Time Theme Song she likes to sign along with Rachel...preferable looking in a mirror - anyway....E didn't lose her mind like I thought she would but it was fun nonetheless. The highlight was at the end when Rachel sang The Silly Pizza Song.

She asked what was first and I signed apple, then what was next (crackers), then she saw I was signing the list and asked what was next (ice cream), next (I said bread but it was wrong and quickly corrected to cereal), then next (bread), when Rachel said you should come up and sign...so E and I did! Big Daddy was there to video (below), so you'll see us doing so. Unfortunately, E didn't show all the signs she knows (she's really awesome at extra cheese) probably because of the speed (we do it slower at home by ourselves) and the distraction of Rachel & Hopkins, but it was fun. At the end, Rachel looked over to me and said, "You're very brave," and I said, "We live you," which is true. Signing Time music and videos are a constant part of our day. But my love letter to Signing Time must wait for another day. Until then, here we are at the 2011 Buddy Walk.

Silly Pizza Song w/Rachel Coleman (plus some)

31 for 21

It's October, which means I'm behind already for the 31 for 21 Challenge in support for Down Syndrome Awareness. So, I'll be double posting to catch up (probably all month) and finally writing down some thoughts and activities that have been going on here.

31 for 21, Year 2

Yep. Already behind the posting schedule for this year's 31 for 21. I really enjoyed doing it last year and will give it my best again this year.

Some update about Miss E:

• We're working through her transition stuff for preschool beginning in January. I have to say, it's been a bit of a pain. The Education Services Center social worker that is arranging all the meetings and evaluation only works part time. So I received a call from our EI specialist who said, oh the at-home is XXX day/time and the multifactor eval is XX day/time. Without even consulting whether it was actually convenient. I questioned having an eval, which forms the basis for E's IEP meeting, on the 2nd of December with the IEP meeting to be a couple weeks later (you know during the last week before the holidays or over the holidays) because I don't think it's going to be enough time, nor am I going to give up our break time to schedule meetings that they could adjust. It's not the school district, so I'm not concerned if I'm 'THAT' parent. And even if I become THAT parent, so be it.
  
• E had all her testing from her therapists. For OT, she even moved from the 2nd percentile up to the 5th in skills! Her OT said that it was unusual for kids to move up, but we'll take it. OT is E's strongest skill and even though she's delayed, she's always had good fine motor skills. In PT, we're working on jumping, kicking, stepping over stuff (E doesn't always navigate over obstacles) and riding a bike! In speech, she still has no words, but 50+ signs (Thanks to Signing Time). I swear she adds 2 - 3 signs a week. It's hard to keep up.
• E has become a real stink bug. To my recollection, she's a total 2 year old, defiant, stubborn, selective hearing, etc. She won't eat certain foods she loved, signs for ice cream all the time, will turn into a noodle if you pick her up to remove her from a situation. Some days it's funny, but others it's incredibly exasperating. She's also vocalizing her demands (no words, just grunts and squawks) so that's fun (**rolls eyes**)
  
• She's eating with a spoon and doing a pretty good job most of the time. Yesterday, though, she did spill yogurt all down her, but I think it was her way of not having to eat it because her throat is still a little sore.
• She has a sore throat because she had her adenoids out, turbinates shrunk, and a tube put in her right ear (because the weenie who did them in December didn't get it seated and, needless to say, we no longer see him for that and other issues). Hopefully, this will help her with the constant fluid in her hear which causes mild hearing loss. While she was under, they also did a BAER test, which came back perfect (e.g., no neurological hearing loss).

More about Down Syndrome (October is DS awareness month and the motivator behind 31 for 21), E, M, Big Daddy and life as we go along.

The End

It's the end of 31 for 21. Thanks to Tricia for making it happen.

Here are things I learned/accomplished:

1. Although I didn't post everyday (doubling up these last few days), I have posted 31 times this month! Yay me!
2. I was thinking, though, of all the things still left unsaid for Down Syndrome Awareness Month and other stuff that just lurking around in my head to write about and feeling a bit panicked because I didn't get it done this month. Then I realized that I can keep posting more frequently going forward (duh!) Which is what I'll try to do because there's lots more to be said about our lives, and heaven knows that M will have many things to discuss (did I tell you we're already on Christmas lists?) and opinions to share, and there will be pictures of my girls.
3. I visited every blog on the 31 for 21 list. I bookmarked quite a few.
4. I commented on entries that I liked. This is big as normally I'm a lurker, loving what I read, but not telling the writer. I tried to make a point to do that this month for these bloggers who were sharing their stories.
5. I've really appreciated those who have commented here. Thanks!

Stay tuned for more in November!

Official 2009 Halloween Report

Pumpkins

This was the first year we carved pumpkins.

M gave me the inspiration for how each should look (click on image to enlarge):


















Note the following:

• When asked what E will be for Halloween, we said sleeping (I don't mess up sleep schedules for kids who aren't allowed to eat candy, tell me what they want to be, or walk. Maybe next year), so she drew E's pumpkin with Zzzzzzzs.
• The stencils are from the little book that Nana sent.
• Yes, there are pumpkin guts on the page.
• I did make the freckles with an awl, but they didn't show up when lit.
  

Then, while Big Daddy wrangled The Girls, I carved very carefully:

















(l-r: Mom, Dad, E, M)

We included the one (far left) that M got to bring home from school.



















Then tested for proper glowing:

















Then placed them on the porch.

Trick or Treating

Costume on (notice the layers underneath, it was cold!) and treat bag ready, M and Big Daddy set off.

Usually, they (M & Big Daddy) do the gathering while I distribute. This year, M asked if we could each do half, so they returned after 1/2 the street and M & I set off after donning my costume (sorry, no pictures were taken). My costume was a little tiara, feather boa, wings (which didn't fit), and a wand so I could be a moonlight fairy. I was lovely if I do say so myself (and because no pictures exists, you'll have to believe me!).

We did our street, plus the neighboring one where there was way more action. Our street, in comparison, was dead. We think because we don't have great lighting at the ends and the houses on the end weren't participating tonight that it may have seemed too dark. Also, because our street dead-ends into another one (versus letting out onto two major streets), I think this deters people from knowing how to manage working the entire neighborhood.

M was really funny and had a ton of comments on her costume. Of course, we thought hers was the best, but I think it's refreshing to see sweet and charming rather than some costumes proposed for little girls.

Anyway, we had a great time. M was exhausted when she got home and despite efforts to keep her up a little later than normal (grrr time change), she was in bed a little after 8:00, worn out, I think, from all the excitement and the chocolate!

Now...only 54 days to Christmas!

Recent Conversations

Yesterday (10/29/09) Morning, on our way out the door to go to school:

...somehow getting onto planets....

M: Mom, what is the further planet from Earth?

Me: Well, Pluto used to be, but now I think it's Neptune. I can't really remember the order of the planets and I don't remember the trick to do it.

M: What trick?

Me: It's called a mnemonic device and it's a way to remember the order of something. Like knowing that the word HOMES will give you the five Great Lakes of Michigan. Huron, Ontario, Michigan, Erie, Superior.

M: Ontario, I know Ontario. Why is it called that when it's in Michigan?

Me: Because it's an Indian word that's used a lot around these areas for the Indians that used to live here.

M: The white people weren't very nice to the Indians.

Me: No, they weren't.

M: I bet the Indians were sad when the white people came.

Me: Yep, I bet they were.

M: It's like white people were British.

*****************************************
this morning (10/30/09) on the way to school

background information - I bought an umbrella for M that automatically opens and closes because she has one that's too big (parasol shaped) for her backpack and the small one that I have is a manual and she has a little trouble with it. We practiced opening and closing it to be sure she could work it with the understanding that she could take it to school.

M: My new umbrella is in my backpack.

Me: Yep.

M: It has a button that opens and closes it.

Me: Mmmmhmmm.

M: It's electric.

Me: No honey, it's automatic.


****************************************
tonight, in the car (10/30/09)

M: Did you know you have a telescope in your mouth?

Me: What do you mean?

M: There's a telescope in your mouth.

Me: [no clue] That you can look at things with?

M: No, that the tooth fairy uses to see in your mouth.

Me: Hmmm...I didn't know.

Halloween Fun

First,
Was finding the right outfit to wear.....

And to have the hair done properly....






















Next,

Supporting players (e.g., sisters) must get into the color scheme of the day....

































Then,
To change into costume,

And have a Parade

Finally,
To come home and smile pretty.

The End

What It Is, Part 246549841

From another mom:

Non-offensive Language 101

H1N1, A Little History of Flu, Links

[Disclaimers: I'm not a medical professional. For this post, I'm working from memory on books and other rearch for my thesis and the project I worked on this summer. Your best bet is to talk to your medical professional and research reliable sources.]

The H1N1 is a scary thing. Influenza, to me, is more scary than many other infectious diseases because it occurs in many species (humans, pigs, fowls, etc.) and the continual combining of DNA from these species leads to new influenza types.

H1N1 is an Influenza A virus that's new to health and public health officials. Regular seasonal flu is also a type A virus (I think), but with different DNA components. Because it's a new variant, illness is distributed across the entire population with mortality occurring in all groups, but especially in those not normally seriously affected by seasonal flu. [note: this is a general statement and better, and more qualified researchers have written much about influenza.]

There are two issues regarding pandemic flu. One is to realize that pandemic only means that it's widespread. It related to the distribution, NOT severity or mortality. The other is that for severity (mortality), the Centers for Disease Control and Prevention has a Pandemic Severity Index that is similar to a hurricane scale, e.g., as it becomes more dangerous/life threatening, the rating increases.

So, one can declare a pandemic (widespread illness in the population), but with low mortality (similar to now, but it could change). Conversely, a pandemic with high mortality is something like the 1918 outbreak.

Regardless of the situation, though, there are great, easy ways to prevent flu.

#1 - Handwashing
Yep. Handwashing. NPR's Talk of the Nation recently did a short bit on Finding the Right Hand Scrubbing Message (audio or transcript).

#2 - Covering Your Cough/Sneeze
Coupled with handwashing, covering coughs and sneezes is a great way to stop spreading germs. Take 5 minutes and watch Why Don't We Do It In Our Sleeves?

There are many more things you can do to protect yourself. Check out the following:

• Pandemic Flu (CDC site) - http://pandemicflu.gov/
• Seasonal Flu (CDC site) - http://www.cdc.gov/flu/index.htm
• H1N1 Flu (CDC site) - http://www.cdc.gov/h1n1flu/
  
• Ready (US Government) - http://www.ready.gov/
• NW Ohio Pandemic Flu - http://nwopandemicflu.org/default.aspx (for those of you in NW Ohio and/or are interested in the project I worked on this summer)

Finally, regarding vaccination. I'm not a medical professional. As a public health person, though, I think that vaccines are great. Along with clean water, they've transformed human health. I have received a flu shot every year since 2003 and the girls have too. We've all had our seasonal shots, but not H1N1 yet. I know there are concerns about it but here are some of my thoughts if you're interested:

1. You should make the decision with your medical professional. Read first, though and know what groups are at risk and whether you and your loved ones fall into a high-risk group. The H1N1 has different risk groups than regular seasonal flu, so know the difference.
2. Realize that if you've been getting flu shots all along, that the H1N1 is another version of it. It isn't an entirely new vaccine, say the difference between one for chicken pox and one for tetanus, but similar to the difference between the seasonal flu shot this year vs. the one last year. Public Health officials happen to know this year of two types of flu that are about and were able to produce vaccine for both types.
   
3. Vaccines are intended to either prevent getting a disease or to reduce it's severity. You may receive the vaccine and still get seasonal or H1N1 flu, just not as bad.

The other information I think is really important about the pandemic is this: DON'T PANIC. In most serious crises, the "walking well" overwhelm medical systems causing them to collapse. During the project that I worked on this summer (I was a contractor for public health departments), the statistics for those people who were well (or able to recover with basic care - fluids, over the counter medicines, etc.) but went to the hospital for care was 10x the admissions of actual patients who needed medical care. Yes. 10 times. Let's do the math, shall we?

Let's say your county has 10,000 people.
The infection rate is 50% - 5,000 sick people.
The hospital admission rate is around 4% - that's 200 people admitted to a hospital
Walking-Well/Worried-Well is 10X - that's 2,000 people who need care; who will divert critical resources, who will use limited resources.

So, to sum up our lesson today:
1. Flu sucks.
2. Wash your hands, cover your coughs/sneezes.
(Rating others silently is also fun)
3. Talk to you medical professional about vaccination.
4. Think about the medical resources you really need. See if your physician, pediatrician, public health department has someone you can talk to.

In the Leaves

School Picture

Getting to the End of 31 for 21

Clearly, I'm not blogging everyday. In fact, I just checked and I have only posted 40 times this year with 22 of them (not including this post) in October!

I missed this weekend partly because I wasn't feeling so chatty and because we entertained friends on Saturday. It was a really lovely day (Hi B family! Can't wait to see you again soon!). Dinner was Mac & Cheese (really, really good) with salad, broccoli and great friends.

Sunday was spent getting ready for Big Daddy's Grandma's (the Triple G to M & E) birthday party. Halfway there, though M said she didn't feel good and wanted to go home. Considering her girl cousins who she loves were going to be there, plus the fun of doting grandparents and aunts & uncles, this was a pretty big deal. We went home, missing the party, and M was off...stomach and head aches, but no fever.

She went to school Monday for a bit, but the school nurse called because she wasn't feeling well. Again with the stomach and head aches but no fever. I kept her home yesterday just in case and because she still seemed a little punky to me.

She went to school today (Tuesday as I write this, thank heavens for predating in Blogger) and did fine, although we skipped Dance so that she wouldn't be too worn out.

So anyway....I'm planning to get 31 posts in this month, so scroll down for multiple posts each day. And, perhaps, continue to work on posting a little more frequently as it's a great way to remember these days that seem to speed by too fast.

Feet

So, one of the characteristics of Down Syndrome is the low muscle tone (hypotonia). E. needs work in every area to keep her muscle stimulated to work like those in genetically unenhanced (e.g., "normal" kids) do.

This summer, our PT thought it would be a good thing for us to try orthotics, and recommended Sure Steps. We picked the daisy flowers because we like to call E. our petite little flower.

When we met with the guy (orthoist? I'm not sure what he's called other than Dan) at Cole Orthotic Pediatric Center, he asked if we were looking at orthotics because E. pronated (a typical issue for kids with low tone). I said yes, that it was a concern, but that I thought the greater issue was her ability to hyperflex her ankles. This flexiblity has been noted by many, including her pediatrician at her first well check (at 2 weeks old). Dr. M said that it was likely her feet were folded all the way back to her shins in utero.







































Did I mention that E has teeny, tiny little feet? She wears a size 4 shoe only because it needs to fit the orthotics. Here's her orthotic with a 8 bump (e.g. 2x4) Lego piece shown for scale.