31 for 21: More Alike than Different

31 for 21: Read This

A mom on facebook posted this and it's spot on.

http://pudgeandzippy.blogspot.com/2013/10/what-fuels-helicopter.html


There is so much I could respond to in this from personal experience ("Cut it with the sympathy.  Cut it with the pity.  It separates you from me."... yes, administrator, your decision making process about your typical son going to kindergarten vs. mine...not so much a comparison since, you know, we're sitting here in this IEP meeting and I'm guessing you're not having the same level of intervention with you son...gah!), but read it for yourself and have a great glimpse into what parenting a child with DS or any disability looks like.

31 for 21: Dancing

Ellie started predance classes last year at the studio where Meredith has been taking classes since she was little. The studio owners are awesome and the teacher was great. We had a fantastic experience and I think Ellie loved it, since she asks to wear dance clothes everyday!

We do work hard at helping her master her dance. For the first recital prep, I know I danced in the class for a few weeks to help her keep on task. The other kids are a big distraction, but her lack of attention is in keeping with the other kids in the class. (I don't know how the teachers herd cats every week!)

We video the rehearsal once the whole dance is choreographed and then practice it at home. For the spring recital, I think I put our versions on YouTube and shared them with the other parents for extra practice, which they liked. Other than that, I'm really grateful that we don't have to wait two more years for Ellie to try the adaptive ballet class and appreciate how great she is....now if we could just get her hippotherapy therapist to teach her to ride standing up with flaming hoops..... :-)

(Holiday 2012)

(Spring 2013)

These are from backstage and dress rehearsal, but who can resist little kids in tutus and maribou?

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)

Developmental vs. Chronological

We're in talks with our school district about Ellie's placement for next year. Because of how her birthday falls, she is eligible for another year of preschool; but she could also progress on to kindergarten.


We met with the district, county, and teachers [In Ohio, preschool services are provided by the county, so the teachers and evaluators are county employees. Services are provided in the school district, so they are also part of the process] a week or so ago and it's hard to separate the aggravation I personally feel towards [not the teacher...we love her!] some of them with the whole decision making process.

This is where the developmental vs. chronological debate comes in. Ellie isn't like her chronological peers. She's developmentally about three (she turned five in January) with more significant delays in speech. On the one hand, I don't know that she'd gain much more academically by going to preschool for another year. However, it would give her more time for verbal communication and for us to escalate signing for her expressive language. It would also give her more time to develop some OT skills (writing, drawing, etc.) and take more cognitive leaps towards kindergarten readiness.

The other side is that we should keep her with her chronological peers,which could mean kindergarten in the fall. She'd need lots of support, especially with communication [ongoing battle, her signing expressive language outstrips her verbal but can we get an interpreter in the room...nope] so I'd worry that the bar is to high and that it's too deep for her. On the other hand, she learns through mimicry so I think she'd really benefit from exposure to older kids and the academics.

On the selfish side, kindergarten would mean all day, every day and no daycare vs. four half-days with daycare.  The financial savings alone could be channeled into therapies to help with gaps. So while you all enjoy Ellie sleeping in the car during lunch...I'm working on talking to some other parents to get some input.

And I should note that I know there's more to the developmental vs. chronological debate (inclusion, separate, etc.) than what we're facing and I'm certainly one to support whichever a family chooses for them; which is why I'm talking to others so I'm better informed and can make the best choice for Ellie.

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.

Some of the Suckitude

Yes. I'm a post behind and to top it off I'm going to have a bit of a bitch about the suckitude of Down Syndrome because tonight Ellie lost a tooth and we think another one will be out soon.  The problem with this is that a) she's only 4.5; b) if it was some sort of trauma, neither Tony or I or any other caregiver knows what happened and c) she couldn't tell us about it until her mouth was oozing blood.

Earlier in the day, I noticed El's lower front  teeth looked really spacey...liked they had more space than normal between them. I made a little note to ask next time we're at the dentist and went along with the day.  Next thing we're eating dinner and El's being a turkey (usual MO) but signed her mouth hurt.  When she still didn't eat or do what Tony asked her, he looked at her and realized her mouth was bleeding.  I looked in (yuck...momma does not do teeth and mouth stuff) and saw the loose tooth much looser...off to the bathroom (easier to clean up) to check it out and have Tony try to see what's going on.  Calls to pediatrician and pediatric dentist who both think some kind of trauma to the mouth. Upon further investigation it does look like she hit the bottom of her chin then bit down on her top lip.  Of course the nurse asks, "where does she say its hurting?" And you have to explain that El doesn't really talk, that even if she did I don't think she'd be able to answer some of the questions (what happened? Where does it hurt? How does it hurt/wat kind of pain? Etc) they want to know. 

And this is the suckitude part...the not knowing or having a way to know from El about what is going on with her. You'd think that a trauma to the mouth that caused two teeth to loosen would have resulted in tears, but I don't know of anything. There have been lots of other tears, but more because we won't get her a second serving of popcorn or let her put grapes in her bowl (she's very do-it-myself right now). 

And then, because you don't know, you have to worry about all the possibilities and even make up a few. And while you wouldn't want her any other way, you want (desperately) to know she's okay or to tell you when she hurts, but the stupid DS prevents her at 4.5 years old from telling you.

And to cap off the whining, we now need to go see out dentist (who is awesome) in this super crazy busy week and try to get x-rays from a kids who doesn't know what's going on and to explain about losing teeth and just overall dealing with this when all I really wanted was for a peaceful week with no extra drama.

Counting

So, we count with Ellie using sign language and we've varied it up. (I once had a colleague explain his theory that parents weren't teaching their kids to count because they usually said, "Now I'm going to count to three and then..."  I've always thought that was very funny but true).  We'd count to three or five when jumping into the pool this summer; and when she started scaring people (funniest thing ever...will have to get video for it)...we count to five, then spell or sign the name of the person we're scaring, then scare them!

While counting various things, we also read lots of books with counting and numbers.  The 10 Little Ladybug book was in heavy rotation for a while and it counts backwards from 10 and she'll read through it and sign/say the numbers and whatnot.  We also count how many bites she has to eat of something she's not particularly keen on. 

Anyway...point is...we count.  Numbers are fun!

The other day, I picked Ellie up from daycare and found her sitting in the little mud ditch outside.  Yay!  So bath time was moved up from after to dinner to when we walked in the door.  She doesn't love having her hair washed so I usually tell her how many pitchers/cups of water I'm going to pour.  Wednesday night, I said okay, four times and then poured a cup of water on her head.  Before I could say three, Ellie says/signs three, then we did two then one.  I don't know for sure that she was counting the pours backward, but on the other hand, I don't know that she wasn't accurately counting.  From her verbal and facial expression it seems like she knew she only had three more to endure. 

At first I was surprised and excited because I didn't expect her to do the backward count!  Yay Ellie!  But then, I find myself beating myself up because I should expect her to do it and shouldn't be surprised at how much she knows.  I think she knows lots and lots but because she doesn't have the verbal or sign language capacity, we don't know how much is locked in her beautiful head. She's a little sponge who is a keen observer and I usually feel like we could be doing so much more with her (more flash cards, more therapy, more, more, more!!!!!); and it become more and more obvious that there is (and has never been) any lack in her; that I am really the one that needs the work.

Why I Missed Day 4

Essentially, it's a noneya.  :-)  In reality, though, Thursdays are melt down nights in our house.  Everyone is crabby and ready for the week to be over.  On top of it, on Thursdays, Big Daddy goes to work, Meredith to school, Ellie to preschool then daycare, I go to work. We all arrive home around 4:00/4:30 ish (I'm I'm not late) and we quickly scarf something down then Big D and Meredity head to soccer practice and Ellie and I go to hippotherapy.  Home again around 7:30, quick getting everyone ready for bed, lights out, then whew!  I was done.  I curled up in bed, read quietly, and went to sleep.

I don't know why Thursday is our very bad, no good, horrible day.  We first noticed it (I think) after Meredith was born.  Tony and I would find we were nitpicking and sniping at each other and then we finally realized that it usually seemed to be on Thursday.  I don't know if it was just being tired by the end of the week of juggling work and schlepping Meredith around, but at some point on Thursdays we just look at each other and go "it's Thursday."  Then hold it together until girls are in bed and everyone goes to their separate corner.

So that's my excuse.  Now, I'm going to post about what Ellie did in the tub on Wednesday!

Strident

The day has been long and frustrating and I don't have much to say since it feels like everything that comes out of my mouth is harsh.  I hate the tone and try for patience buy failed, failed, failed today.  Hopefully, a good night's sleep and deep breaths will help tomorrow.  If not, how needs happy pills when there are donuts?

The Floor

Ellie likes to sleep on the floor. Usually, she falls asleep in the corner where the door and wall are so you have to push her when you open the door.  When Tony or I go to bed, we pick her up and put her on the bed.

After a long day which saw me getting home around 11:15, I went in and kissed Meredith then went into Ellie's room to find her on the floor under her bed. 

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.

Halloween Hoot

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.

ButterflyHouse

It was a parent involvement day at preschool.  It was also one of the first outings that we had by ourselves that was for fun.  E. had a good time, I think. So did mommy.

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.