Saying It Better

I love blogs. The list on the sidebar doesn't even touch the bookmarked sites that I have. The ones on the sidebar, though, are ones I read on a regular basis. I tend to be drawn to blogs of knitters, other moms, really good writers, and (just getting into) those who are writing about raising children with special needs, especially Down Syndrome.

Many times, these other bloggers have a way of expressing thoughts, feelings, or experiences in a way that perfectly encapsulates my own. There are two that have resonated with me recently:

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The QC Report
Every time we let our children walk away from us, we’re practicing for the time they do it for keeps. And every time we let them go out into the world, even for a short time, some part of our brain thinks “No! Not yet! There’s no way she knows enough. I know for certain I haven’t taught him enough. Did I teach her the eyeball-gouging trick if someone tries to kidnap her? Did I get him to tolerate citrus fruit enough so he won’t die of scurvy? Did I impress upon them how unspeakably fragile I feel when I think about them doing something self-destructive? Does she know how I have never loved anyone on earth the way that I love her? Come back. Come back." (4/10/08 entry)

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Down Blogger
I am a member of more than a few Down syndrome specific sites. I routinely attend the yearly DS Conferences. I know a fair bit about statistics, different kinds of DS, health issues specific to "our kids", etc. In fact, it is rare a day goes by that I don't find myself speaking or typing the words "down syndrome". And yet, DS is such a minor part of who my daughter is in my thinking. I rarely look at her and think "oh, that is because of DS". I don't equate her successes and failures with the number of chromosomes she packs. Even so, I am aware of her genetic makeup deep in my bones, it is there even when it is not in the forefront of my thoughts.

Somehow, I have been able to raise her to be a young lady who happens to be really cute, funny, charming, a bit moody, a third grader, a great reader, a pretty good baseball player, an aspiring artist...who happens to have a little something extra in her genes. In a weird way, DS is everything, and DS is nothing. It colors most of my thinking about her and her future, and still manages to be at the end of a long line of things I think about when I think about her.

It is almost as though the DS is the last hurdle we jump in all cases of trying to give her the life of a normal little girl. Usually, it is along the lines of "How can we make a world that has her pegged as 'that Down syndrome kid' see who she really is. (03/01/08 entry)

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Golfing Girls

I forgot that we went miniature golfing for Big Daddy's birthday. When doing the June Newsletter, I found these pictures:

It was really hot that day and we were trying to keep E out of the sun as much as possible.












It was fairly successful, if by successful you mean that we skipped a number of holes because good sport(wo)manship was being compromised.











I think it's definitely something we'll try again.

Family Newsletter: June 2008

My Beautiful Girls,
June was a great month for all of us. We began the month with your recital, M. You danced to Christina Aguilera's Car Wash and it was great. We were almost to the end of the recital when there was a tornado warning and they evacuated the theater. Daddy, E and I were with Oma & Opa, but you were in the staging area with the other kids. I wanted nothing more than to race to the back and get you, but I also don't want you to scare you. We sat and waited patiently and, once the threat had passed and we were all reunited, you were none the worse for it. In fact, they (Miss Elaine and the teaching and volunteer staff) probably did a much better job of distrating you than when the tornado sirens go off here and we scramble to the basement. Anyway, the recital was awesome and this time, the process was just old hat to you.

June saw the addition of more plastic to the household. You and Daddy went out during the Community Garage Sale and returned with another little baby-care set. This one, though, is much different! than the other ones we have! You've spent quite a bit of time filling the storage areas, putting babies in the bath, high chair, and cradle. It also prompted you to spend your birthday money on a little suitcase of doll clothes. Of course, the suitcase itself is now being used for paper dolls.

The other thing that I've noticed about you lately (not just June), is that your art has really changed. You're drawing people more completely - e.g., adding hands, clothes, etc. - and using a lot of color. We have pictures posted all over our bedroom wall and many more stored. One of these days, I'm going to collect my favorites and scan them. We've also been doing more art projects and made you, E, and your cousins C and J little purses. We used beads and ribbon, etc. to complete them, then put in $1 (yes, I'm a big spender) and some chapstick. These went over like gangbusters.

One other adventure we've had was finding the hummingbird babies. We found them because we saw the mama hummingbird hovering over them and bringing them food. We left them some food and went and told the neighbors as they were in their yard. Mrs. S. also came out and we all took pictures and movies of the little birds, thinking that in a day or so, they would fly away. Unfortnately, overnight there was a terrible storm and one of the babies died. Then, later the next afternoon, despite the fact that I lifted the remaining baby to a tree (I used a little scoop) and that we check on it after another miserable storm that blew the rain sideways, the second baby died. As we talked about it, you said that it was okay because at least we had pictures. And so we do.

For you, little E, you continue to make wonderful progress. You move constantly and, when left up to your own devices, like to wiggle your way off the blanket or mat. When eating, you like to raise your hand up in the air and wave it around until I grab it. Then, multi-tasker that you are, like to play with it while eating.

I should also mention the use of your legs and feet. It's not that you kick me while you're eating, rather, its more like you use your legs and feet to explore. In the blue bouncy seat we have, you use your feet to kick the hanging toys as they're still out of reach. You also recline your feet up the little posts when you are taking a little rest. The other thing you do with your legs are to get them trapped outside the bed. Despite placing you on your back furthest from the wall, in the mornings you are invariably over on the other side of the bed, on your stomach, and with your legs hanging outside. It's really quite amazing.

You also sigh (which are so sweet) and make little noises while sleeping. There have been many a time when you've made noise, but when I've gone in to get you up, you're still sleeping. I shouldn't be surprised because both Daddy and M are "active" sleepers. Given your inability to stay in one position (neither did M when she was an infant, or now for that matter) and the talking in your sleep, you're on target to fit right in with them.

June was the month that you really started waking up talking. Once awake, you like to have conversations and I have to admit, that I had forgotten that M used to do that too. These are pretty funny as there's one, sharp little shout that is definitely "Hey! Get in Here!"

In June, we also started solids, and so far, you're doing great. You've had rice and oatmeal cereal, carrots, sweet potatoes, and prunes. The second time I sat you in the high chair and put a bib on, you already were lifting your head and opening your mouth like a little bird, ready for the cereal.

We continue to get really great reports about your progress from Early Intervention. We started using the Big, Red Chair, Jr. Executive model (also known as a corner chair) to help you with your head, neck and shoulder control. You like being in the chair and we've played various little games, including rolling the little chiming ball back and forth.

There isn't one moment this month that really stands out as a best moment. Rather, it seems that our time, now, consists of nice, simple moments that reinforce the fabric of our family. It's not all roses, though, and one day I may write the Anti-newsletter which details how mommy lost her cool, or M had 3 time outs, or E spent the day not sleeping, etc. But that's not today. Today, and every time I finish one of these newsletters, I am filled with joy and love so profound that there are no words that I've found to express how lucky, blessed, thankful I am for you both, for Daddy, for our family, for my life as your mom.

Love always,
Mama

The R Word

[Note: this post contains profanity. If you're not comfortable with that, please return another day for a non-blue post. JMO]

I’ve been struggling for the last couple weeks with an incident that happened when I commented in a blog. The author (BA=blog author) was giving a commenter a really lovely, scathing set-down. And I was digging it, until the BA called the commenter a fucktard. Now, I’m all about using the f-word and didn’t object to the profanity. I did however, comment that fucktard was offensive because of it’s obvious association with the word retard.

What followed was an exchange between the BA and an other commenter (OBC) which basically said I was over-reacting, it was okay because they would call someone who was mentally handicapped a retard to their face if they were being an asshole, that their kids sometimes acted retarded, and that they’ve already had this conversation with others who’ve objected to the use of fucktard or edutard.

I’m astonished.

Since the exchange, I’ve tried to craft various responses from a lengthy, pedantic treatise on the words and how they can be linked to retard, explanations about intellectually capacity vs. mental developmental delays, to an open letter to the BA and OBC responding point by point using much sarcasm. I’ve considered not engaging these people, because clearly, they don’t get it. And, of course, I’ll never read their blog again.

But, I think, this is what I want to say about it:

I believe that using retard is offensive. Using its derivatives (fucktard, edutard, etc.), even more so. If elements of communication are tone and context, there are no circumstances in which the use of the ‘tard derivatives are anything but a substitute for the pejorative use of retard.

I don’t think using retard (and let’s just assume I’m also saying ‘and the ‘tard derivatives’ from now on) is clever, or makes your argument against ignorance, or is anything but one of the most heinous hate words. Think about it, if you substituted a racial epitaph, ethnic slur, or derogative comment about sexual orientation, people would think you were the worst kind of bigot. Use retard and everyone accepts it as okay. It’s not.

Retarded should be accurately used to describe the mental and/or physical developmental delays that some children and adults face, either from genetic or medical conditions, or from accidents. Correctly used, it only means that these things are slowed; not necessarily lesser or diminished. It certainly doesn’t mean ignorant or stupid.

Unfortunately, retarded is now equated with the undesirable characteristics of stupidity and ignorance. It is used to demean those who are “normally” developing at the on-going expense of those who are not. Like all hate words, it is used to perpetuate wildly inaccurate stereotypes of a group of people who, even more than any other group, are already marginalized through fear and ignorance. And if you don’t think people fear mental handicaps, then explain why the abortion rate for the prenatal diagnosis of Down syndrome is over 90%.

Also unfortunate is that parents, caregivers, professionals, etc. of those with mental and physical delays are unable to use the word correctly without fear of the negative connotation touching their loved one. It denies basic human dignity to a group of people and insults their parents, families, caregivers, professionals who have invested their love, energy, and time to reach their potential, whatever it may be.

Amazingly, those of us given the gift of disability would not change it. The condition (in our case Down syndrome) is the least interesting thing about E. Unfortunately, it will be the most important for many and they will make so many incorrect assumptions about her based on the condition alone. And then many will then use these assumptions as the foundation by which they demean someone else. It’s wrong. It’s unacceptable, and I will continue to speak out against it.

In direct response to the BA and the OBC - Ree (from Confessions of a Pioneer Woman) accurately uses the word retarded. Her brother has some developmental delays due to a genetic condition. This, however, doesn’t give you license to use retard in a derogative way. I’ve never read Ree use retarded to imply that Mike is stupid or ignorant, or to demean him. Instead, she shows him for all his humanity - that he’s exasperating, loveable, flawed – as a sibling would, and usually at her own expense. And she writes about her other siblings and shows how they harass each other. It seems that in their family, harassment is just one (of what I would guess as many) expression of love. I’d also speculate that, given Ree and her siblings’ ages, she’s had to put up with a lot of ignorance and insult (intended or otherwise), which is why her use of retarded is not offensive to me.

Your post a couple weeks later about the Religion of Ethical Reciprocity post, your one commandment is to:

Treat others as you wish to be treated. Be unconditional in both love and forgiveness. Practice grace and kindness.

No one wishes to be treated to a label that denigrates a class of people and denies them basic human dignity. Everyone deserves a chance to unconditionally loved, even the mentally handicapped; and when we fail them by using inappropriate language, hopefully someone will come along to help us. Practicing grace and kindness might mean, in this instance, that when more than one person speaks up against the use of a word, that you take a moment to consider what they’re saying instead of going into a defensive mode. Try talking to your early intervention programs (all states have them) or finding out about the Special Olympics in your state. Read or watch the “Retard Speech” by 17 year old Soeren Palumbo, or visit his facebook page – Campaign to Ban "R" Word.

I haven’t decided whether to continue visiting the BA’s page or not. On the one hand, I’m making her response personal when in truth I don’t know her. Part of my astonishment was that given her topic (homeschooling) and some of her personal history, she should be one who intuitively understands this. However, it only shows that we all have, including myself, a ways to go at any given time.

Last Week in Pictures

For the week of June 16 - 22:
1. Singing with Daddy (really needs sound with it, but this is a nightly event)





















2. Tuesday, June 17 - Kindergarten screening (M passed with no problems). Now with the missing tooth, she looks even more ready for school.





















3. Tuesday was also the day when M's tooth had to be pulled. We were referred to a pediatric dentist because of the previous trauma inflicted by our regular dentist. If you look in the picture closely, there's another gap in her teeth in the molars on her bottom left.


















4. Wednesday was lunch at Oma & Opa's house with Great Grandma (also known as Triple G)

















4. Thursday, E got a corner chair from Early Intervention. It helps her build upper body strength, especially in her shoulders and neck. She loves it and really sits up straight for her sister.






















5. Also Thursday, E started solids! Big, big girl.
















6. Friday, projects with Mommy. M likes to take pictures where the subject is making faces.

4 years, 9 months, 17 days

9/6/2003 - First tooth















6/10/2008 - Loose tooth















06/22/2008 - No tooth

















Beautiful Toothy Smile

The Week in Pictures

The Girls Hugging






















Safety Boy and Safety Girl






















Getting Ready for M's Dance Recital







































Pretty Clips in Sissy's Hair (M put them in and took the picture)

















Meeting Great-Great Auntie Neat

Newsletter: April & May 2008 (E)

My Beautiful E,

April and May have been big months for our big, strong girl. In April, you turned 3 months old and we went to have our pictures taken at a local, big box store. After a long wait (despite appointment) and other assorted mishaps, we left with a minimal order which is still sitting on my desk, doomed to never see the light of day. The pictures were so disappointing of all of us, that we tried our local photographer. Her photos of you, your sister, and our family are so beautiful to me. I've uploaded them to Flickr (see sidebar) for everyone to see.

At three months old, you began sucking your thumb. You have a way of working it into your mouth using your whole hand. One day, I'll have to try and get pictures of it. I'm not sure if you'll be a thumb or finger(s) sucker, but I'm going to guess that you will as you (like your sister before you) developed a sucking blister on the center of your upper lip. This is due to your ability to do a great job nursing (Score: Mooma 1; Formula 0). It took us until late March for us to forgo the supplemental bottle and at your 4 month appointment, you were 12 lb 12 oz (85th percentile). M asked me a couple weeks ago why your knees had cracks in them. I had to explain that they weren't cracks, but dimples. You don't have quite the girth that M did, but you've since doubled your birth weight and are so beautifully healthy looking.

In April, you attended your first Ned E. Baker Lecture in Public Health with me. This is a lecture from the organization for which I used to work and it was lovely showing you off. I was particularly proud when some of the nurses looked at you and knew from your wonderfully muscled cheeks (it's not fat) that you were breastfed. It was hard work, but these last two months have been great for both of us in terms of the nursing. I'm so glad that we stuck with it.

Other funny things that I forgot about nursing (you may want to skip ahead if this is TMI) are that you like to try and wrestle with me to get to the boob. I have had to say to you (more than once) that I'm in charge of the boob and things would go much quicker if you'd let me do the job of getting it into your mouth. It would seem, however, that you have a pretty big dose of do-it-my-wayitis, so struggle we do. The other funny thing is when we're nursing while lying down (my favorite position right now), you'll throw your top arm up around my boob like you're a kid guarding the test you're taking. Either that our you'll grab my shirt and pull it down so that you're hidden. I remember M doing this as well and thinking about the odd need for stealth. The other thing that I have to try and remember to record you doing is the little maniacal laugh you do when you're really hungry and ready to eat. As I get ready and position us together, you do this little heh heh which is really funny (maybe only to me, but still....).

In May, you had two big milestones - rolling from your back to your tummy and laughing. You have (on occasion) rolled from your tummy to your back, but you usually go one way, then get stuck. The time on your tummy, though, helps you gain strength in your neck, shoulders and arms in the pursuit of sitting and moving. The other thing you'll do (back or front, it doesn't matter) is pivot yourself around and/or move yourself off the blanket. I fear that you will become frustrated at the effects of the low muscle tone, but also see you working so hard to still get to where/what you want to do.

Oh, I forgot wrestling with Chelsea and other larger toys. Oma and Opa gave you a little doll who we've named Chelsea (all people/animal toys are named in our house). Chelsea is a favorite of yours, we think because she is bright and colorful with crinkle noise in her dress. Her dress also has different textures, and a couple rattles. When we lay her next to you, you like to bring your legs up, flop them over so you get on your side, grab Chelsea and give her the what for. You will also use your legs to kick at toys and entertain yourself. You're quite the equal opportunity limb user in pursuit of your goals.

Rolling and laughing happened on the same day. Daddy had taken you in to get washed up and pjs on. As he was wiping under your chin, you giggled. It's not an all out belly laugh, but a little laugh that pops out at unpredictable times despite Daddy and I trying everything short of bringing in trained seals to perform for you. Of course, some may say that we are the trained seals, but that's for another day. In the meanwhile, we try all sorts of funny things to hear the little laugh again and I know that I feel like a hero when I hear it.

Finally, I have to say that I've come to love our Tuesdays and Thursdays together. Although I miss having M with us, I also like the uninterrupted time with you. We lie on the bed and play, play on the floor, have little adventures (fun way of saying grocery shopping), and just have time together. I only hope that you're having as much fun being my girl as I am being your mom.

Love,
Mama

Stuff

1. Check out the Flickr photostream box. I've finally uploaded some family photos we took when E was 3 mo. old
2. This cracked me up -If you give a mom a minute
3. So did this - Pie Chart
   

Newsletter: April & May 2008 (M)

My Beautiful M,

I realized a few weeks ago that I hadn't written the April Newsletter and we were already half-way through May, so I decided to wait and do a combined letter. I decided to do a combined one for M, then one for E.

M, in the last two months, you have become a whole new person it seems. I don't know how many times I've thought to myself, "when did you learn to do that? who taught you that?" You love jumping and hopping and are constantly making noise of some sort. I think you take it as a personal affront to have silence so you fill it with tapping, jumping, banging, etc. You've also taken to singing your thoughts to your sister. Most times, the gist of the song is about how much you love her, will always love her, and how you'll never leave her. Unfortunately, I don't have a constant microphone and recorder on you because the songs are so sweet.

April was the month where you stopped naps. Yes, a month shy of 5 is when you finally said No to naps. It's been pretty successful, especially since your bedtime was moved earlier. On warm days when we've been able to be outside or days you've been at school, you're a lot more tired and the 5:00 - 7:00 time period can be a little dicey. As I've mentioned previously,
I was warned that Five could be emotional and a couple times a week, you have a major meltdown. In fact, part of the reason I am able to get this Newsletter written is because you went to bed at 6:45 tonight. You become inconsolable about some issue - tonight it was "if I could just do the puzzle, I could stop crying - and no amount of reasoning or assurance makes it better.

In the last few months (I think since before April), you've ended playing the music that I think we've used since you were a few months old. Sometimes you substitute a CD of audio recordings of books that Nana read last year, but most times, it's just quiet now. I miss hearing the music and, sometimes when you're restless, will put the music on hoping that its familiarity will calm your sleep.

Did I mention that you also like to make funny faces? Especially when taking your picture? It's pretty standard now that for every lovely series, we have one or two that looks like this.

The last few months have been a bonanza of fun and gifts due to your birthday. Your gifts and how you play with them reminded me to tell you about how you seem incapable of putting things back into their original container. This isn't a bad thing necessarily as you take Polly Pockets and put them in makeup cases or stuff purses with all sorts of non-purse related items. A salt shaker because a receptacle for beads, pretend money now lives in a hair caddy, etc. I'll have to mark some examples down because they're quite funny sometimes. When I ask about why you don't return something to it's original (and in my mind, proper) container, you always have a good excuse.

Some recent conversations
4/7/08

M: Mom, how do bumblebees have babies?

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4/26/08

M: How do the ants die? (this in response to the exterminator coming to remove the ants that were infesting our kitchen)

Me: Remember the stuff the guy sprayed? It has stuff that makes the ants die.

M: Yeah, then the ants take the stuff back and they cook it up like ants do, put it on a plate for their family and they eat it then they die.

Me: Yep

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At the kindergartener's patriotic program, while standing during the National Anthem:

M: This is like when we saw the people (waving hands) who were singing the song about the king with the blue pee.

Me: Yep it is

[Note, the people we were watching was the high school choir and they sang the Hallelujah Chorus from Handel's Messiah. I told M the story about why people stand for the Hallelujah Cho rus and that King George II had blue pee due to porphyria. (Actually, it was George III who had porphyria).]

April and May have been hard for me. I've been struggling trying to find a balance with you girls and although you may not understand for many years, creating a new identify for myself as a stay-at-home mom. I also suspect some hormonal/adjusting to the realities of how our life will be now with Sissy. I know I've been short, impatient, easily frustrated, and forgetful. I realized the other night when I was giving you a bath and we had a squirters fight how much we haven't laughed together. It was such a good moment for us and I'm going to work harder to have more moments of laughing with you. This doesn't mean that I will stop with the mom stuff, but I think we can find a way to do it with a little more fun.

I hope too, that now and years from now, you know that most of Mommy's frustration has nothing to do with anything that you have ever done and that Mommy loves you beyond all measure. I love our family more than I can ever say, which is why I keep trying to be the best Mommy for you and E. You are my beautiful, funny, smart girl and I am so happy to be your Mommy.

Love,
Mom