Yo soy La Lay

adventures in family, faith, and Down syndrome

Lesson #21: Unintentional Ableism

Ableism – a set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities.

We would love to see Tessa break down barriers, exceed expectations, go beyond anyone’s wildest predictions of what she will accomplish in her lifetime.  John and I have no preconceived notions for what she will do with her life. Full inclusion through high school?  Why not?  Go to college?  OK!  Open a restaurant like Tim’s Place?  Dandy!  Star in a TV show like Glee?  Great!  We set no limits on her potential and watch to see what happens.  Hopefully, that is a powerful force in her life that pushes her to do her best.

She might not do any of those things.

The reality of our future with Tessa (and with any child, really) is that we have no way to predict what will come as she grows.  It is certainly our responsibility, as parents, to teach our children to live to their full potential.  However, we cannot pass judgement on what that potential is.

There is still value in the life of an adult who bags groceries at the local supermarket.

There is still value in the life of an adult who lives with his parents and takes public transportation to a minimum-wage job.

There is still value in the life of an adult who “makes your french fries.”

(On a side note, I just need to vent for one second about the statement “well, someone has to make my fries.” There is nothing wrong with making french fries.  And yes, someone really does have to make them for you unless you plan on climbing into the drive-thru window at McDonald’s and making them yourself.  So why do we need to use this as a sarcastic comment to mock a person’s intellectual ability?  Just wondering.)

Being successful has nothing to do with money.  It has nothing to do with power.  It has nothing to do with influence or intelligence or ability or stuff.  It has everything to do with abounding love, kindness to the most unkind people, friendship, compassion, and contributing in the best way that one can.

I get that now.

Truth.

This is part of the 31 for 21 Blog Challenge!

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Lesson #15: We owe a lot to parents of the past

This is part of the 31 for 21 Blog Challenge!

I’m cheating a little tonight…. not because I don’t have time to write.  Actually, one thing I DO have tonight is time.  However, I want to share the words of another mom… words that I’ve been trying to find a way to express for quite some time and frankly, she does a better job than any of the drafts that I have come up with.

Please click below to read…

To the Mother of the Adult Son With Down Syndrome in the Grocery Store Today

Tessa, 20 days old

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Lesson #13: Advocacy never sleeps

This is part of the 31 for 21 Blog Challenge!

ad·vo·ca·cy

noun \ˈad-və-kə-sē\

the act or process of supporting a cause or proposal : the act or process of advocating something

There are a lot of days that I wake up with a take-charge attitude toward advocacy.  Most, even.  When connected to a community who advocates for special needs, there’s always a cause to fight for.  Some magazine posts an insensitive article about birth defects.  A television program uses the R word inappropriately.  Some crazy scientist tells me that my child is suffering.  Yes, every day, without fail, there is a need for vocal campaigning.  Every.  Day.

Trust me, I’m all about fighting the good fight.  I’ve never been one to shy away from (politely) sharing my feelings.  If someone posts a link to a news story that isn’t supportive or encouraging, I do my research and then I’ll call someone out on it.  I champion the causes of acceptance, love, understanding, empathy, and inclusion through words and actions.  I am all for preaching to the choir, preaching at the devil, even preaching to a brick wall if no one else will listen.

Most days.

Some days (not many, but a few) I’m tired.  I can’t fight every battle.  I do think it’s incredibly frustrating that something happened, but today, I cannot fight.  Because even if advocacy doesn’t sleep, sometimes I must.  Without a break, it’s an effort that isn’t sustainable.

Thankfully, there is a huge network of moms out there ready to advocate for inclusion and acceptance when I can’t.  Not just moms, actually.  A community of supporters stand in the wings, picking up when I’m tired.  I do the same for them.  Together, united behind a worthy cause, our advocacy never sleeps.

True.

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Presenting: My Defective Child

I did something really dumb.

Well, not really that dumb, I guess.  That’s kind of melodramatic.  But still.

Last week, I was invited to talk to our Child Development classes about Tessa and her Down syndrome.  They were starting a unit on birth defects (which isn’t how I, personally, would categorize her extra chromosome, but whatever) and the teacher thought I could provide an interesting perspective.

I was totally thrilled to do it.  I feel really excited to share my girls with people.  I think it helps to make Down syndrome less odd for those who don’t have contact with it.  Anything we can do to stop making Ds so stigmatized, I’m on board.  And then I got kind of gung-ho about the whole thing and made a PowerPoint with pictures and diagrams.  At the last minute, I decided that I would include a video of Ellie at nine months and Tessa now (almost nine months) to show the difference. That’s kind of where I got myself in trouble.

We are making SO MUCH progress with little Miss Tessa!  Listen to her talk:

Forgive the awkward camera angles, please.  She won’t talk if she knows the camera is on her.

And here, she’s getting a little early-morning ab workout:

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She’s so close to sitting and she’s pulling up into a crawling-like position and she’s eating like a champ.  I didn’t need the video reminder of her delays, but there is was.  Ellie, so so so cute at nine months, clapping, sitting, babbling.  I got a little teary.  (For the record, I’m really not a crier.)  I’m not sure if it was seeing my threenager so cute and cuddly and small or seeing the progress that Tessa still has to make, but I can tell you that those videos did not make it into the PowerPoint.

Someday, I’ll be really ready to love and embrace watching all my old videos of Ellie.  I’m just delayed in that area right now.

The presentation, as a whole, was actually pretty good and very well received.  I let them ask me questions about Tessa and got some good ones.  The vast majority of them were very concerned about how she will wear glasses if she needs them (since she has no nasal bridge) and wondered if she could wear contacts.  They asked how it felt to get the diagnosis (that’s complex), wondered if I wanted more kids (yes), asked if she could do things like drive and live on her own (probably), and were very respectful.  One girl asked about why we didn’t do any prenatal tests (that was an awkward thing to explain…carefully… in a public school).

I’m so glad that I went to talk to these kids!  I had the opportunity to tell them about how she is actually much more alike than different and that is what really matters.  One student asked me how my day-to-day is different with Tessa than it was with Ellie.  And I was happy to report that, besides the therapy, it isn’t.

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Mad vocabulary skillz

Today I took Tessa to the doctor. She has a cold and since her last cold put her in the hospital for a week, we are being more vigilant.

Yay, copays! :p

In any case, the doctor we saw was new to the practice, so I had the joy of filling her in on Tessa’s medical history. As we got to the end of the appointment, she said to me, “So, you must be in the medical field. What do you do?”

I wasn’t quite sure how she came to that conclusion. What I do is virtually the exact opposite of medicine. Do schools make people healthy?? No, no, no. Schools breed yucky little diseases and keep these doctors working! I just laughed and responded that I’m actually a teacher, then asked how she got that idea.

“Wow,” she said, “you use medical terminology very well!”

Umm, yes. I suppose that at this point, the jargon is more natural to me than the average Joe Schmoe on the street. I feel a little irked, but also a little proud, that she was impressed by my vocabulary. I don’t necessarily want any opportunities to improve it, but at least I know that if I’m ever at a cocktail party with some doctors, I can blend right in.

Who am I kidding? Me? At a cocktail party?? Not unless they are serving margaritas and Bud Light…

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When you can’t hold all the babies you want

In the moments following Tessa’s birth, after the doctors and nurses left and it was just John, my mom, and I, we processed.

I write to you today having just had a “conversation” with another blogger whose daughter also has special needs. I want to explain to her – and you – why my reaction to a life-altering diagnosis was fairly mundane. While there are many, many life reasons that are a part of it, two stick out most prominently.

My mom hadn’t been in the room when Tessa was born and diagnosed. She had just shown up to the hospital to bring John some lunch and to keep me company while we waited for the baby. While I believe that she knew the baby had arrived before she entered, she essentially walked into our strange post-birth vortex on accident. I don’t remember telling her about Tessa or Down syndrome or anything else when she arrived. Maybe she remembers those moments, and maybe someday I’ll get her to share them with all of us, but having her there was one of the catalysts for just moving forward. Soon there would be other family arriving to meet our girl and I sure as hell wasn’t going to have a pity party after I had just given birth.

Besides (and probably more importantly), the road to Tessa was not smooth. When couples set out to have a family, nobody tells them how hard it can be to get the family that they expect. It’s hard for me to not feel envious that for some people, the “having a baby” part is so easy… especially when they take it for granted. For us, it has not been so.

Our first baby was not planned. We were set to head off on a three week road trip and while packing, it dawned on me that I hadn’t had a period in… awhile. I took a test, it was positive, and we freaked out. We told our families. We bought a little AC/DC onesie. We had an ultrasound and saw its little heartbeat. A week later, after another ultrasound, we learned that the baby did not survive. Nine weeks in the womb. My body did not naturally miscarry, so a D&C followed soon after.

Next was Ellie. We know how that turned out. She is wild. (And, currently involved in quite the love triangle at daycare. Good Lord.)

We planned the next baby for a time that was going to be convenient for us (or so we thought). It took a couple months, but soon there was another positive test. In an attempt to calm my nerves, my doctor let me have blood draws to check my hormone levels. They didn’t behave as they should. It was not looking good. I carried that wee one for 10 weeks before we had official confirmation that she would never be born.

Genetic tests following both of my D&Cs found no abnormalities in either child.

I carry those babies around in my heart and think of them most days. Mostly, I imagine that a woman who died before having children might be holding them in Heaven. Maybe that’s crazy, but it helps.

John’s reaction to Down syndrome was more typical. He mourned the baby that we had planned to get but didn’t come. He worried from the moment she was diagnosed. He wondered what kind of life we would all have. I’m certain that my own attitude made him feel badly about his reaction.

If you are struggling with your child’s diagnosis, please know that you are not alone. His reaction wasn’t wrong and neither is yours.

In a moment of sheer panic, John turned to me and asked how I could possibly be fine with “all of this.” My response was simply that when you don’t get to hold all of your babies, the ones that do make it just feel even more miraculous.

That is why I can take this in stride. Tessa’s very existence on this planet is something that not all babies will get to experience. I am so desperately thankful that I have been able to hold and tickle and kiss this little being. That is all. Because we don’t always get to hold all the babies that we want to.

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Down syndrome doesn’t suck.

I don’t prefer to give most people who berate and belittle people with Down syndrome any consideration.  But I just need you to understand something very important today.

Down syndrome doesn’t suck.

I’ve watched a lot of really, really crappy things happen to great people recently.  Pain beyond my ability to comprehend surges through the hearts of new parents kissing their babies goodbye too soon.  Families devastated by poverty, war, hate.  There are absolutely horrific events happening all over my community… all over the world.

And apparently, the birth of my baby girl is one of them. 

Recently, Richard Dawkins, a famous geneticist and author (among other things… a**hole being one of them) told a mother expecting a baby with Down syndrome that it would be immoral to continue with her pregnancy, given that she knew about the condition.  He said that people should try to “reduce suffering” when they can and that bringing a child like Tessa into the world isn’t right because she will suffer and won’t contribute to society.

But, Mr. Dawkins, what you have failed to realize, is that  in her eight months of life, she has already contributed to society.  Probably in a better way than you ever could. 

Tessa’s smiles light up the faces of family and friends who have long been searching for something to smile about.  Some of her loved ones glow in a way they never have before when they see her.  The very feat of her existence, beating obstacle after obstacle, has inspired people to do more, try harder, go farther.  She has changed the way teachers do their jobs, influencing the education and experiences of an incomprehensible number of children.  She has helped people forge relationships that haven’t been strong before.  She has been in the world for 247 days and she has made an impact.

Tell me that our world doesn’t need more positivity?  More love?

I know a lot of people with 46 chromosomes who suffer or who don’t contribute to society.  In fact, they sometimes make our world worse.  You made it worse.  You perpetuated an outdated, unjust stereotype.  You devalued the worth of my child.  You scared a mom who doesn’t need to be scared.

People who receive a prenatal diagnosis of Down syndrome deserve accurate information about their child’s future.  If you can’t give accurate information, please don’t give any.  Next time, send them to the Down Syndrome Diagnosis Network.

Rant over.  Special Needs Mom Law #3:  Let it go. 

Done.

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She is so loved. 

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So where’s my magnet?

Oh Ellie Bean, you sure can keep your momma on her toes.

So, we’re working on thank you notes for all of those who donated to our cause when Team Tessa ran in the Rock n’ Roll half back in in July.  We decided to order some ridiculously cute magnets with Tessa on them to send our supporters.

Ellie takes a keen interest in helping me do most anything around the house, especially things that she really can’t easily help with.  Like writing thank you notes….  There’s no clear way for her to help write letters to our family and friends, but after more whining than I could handle a little consideration, I decided that she could put the magnets into the envelopes.

At first, she was totally enthralled with these little pictures of her baby sister.  But, as her interest in envelope-stuffing quickly waned, she decided to spread all fifty out across the table.  “Look at all these cute little Tessas!!” she squealed, lining them all up in neat little rows.  Until….

Cue dramatic music.

“So, Momma?  Where is my magnet?”

Not upset, not mad, not annoyed.  Just confused.  And my brain just started to race…  What to say, what to say?

We have made a decision that there isn’t a need for a sit-down conversation with Ellie about her sister’s genetic makeup.  She’s a smart cookie, she hears us talking.  We read her 47 Strings, she hears the words “Down syndrome,” and it’s just a part of our life.  She doesn’t know what the difference is, or how it will change all of our lives, but she knows.  So how do you explain this cause that we’re connected to, without diminishing the value of the child without a cause?

“Well Ellie, do you remember when we all wore our Team Tessa shirts and watched Daddy run a race?”

“Oh, yeah.  Well, I choose this one.  This one is mine.”  (picks up a Tessa magnet and hops down from the chair)

And she walked away.

Oooooooookay.   So my freak-out was unwarranted… this time.

I don’t worry about Ellie getting lost in the shuffle of having a sister with extra needs.  Believe me, she makes herself the star of her universe with no problem.  As we continue on our journey of this kind of “parenting on steroids,” there will be lots of tough conversations.  Perhaps Tessa, too, will have “what about me?” questions.

Perhaps?  Who am I kidding?  Of course she will!  I’ve never subscribed to the “equal is fair” philosophy.  I know that each kid will require her own special type of parenting, but explaining any of that to the other is… tricky.  Good thing I’m going to get lots of practice.

And now, cuteness…. (which is, somewhat ironically, pretty Tessa-heavy this time.)

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This is her “if you think I’m done eating my food, you’ve got another thing coming” face:

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Reacting Appropriately

And here is the difference that Down syndrome makes:

Belly sleeping must be something genetic.  From me to Ellie and now Tessa… we love it.  As Ellie has grown, she has embraced more of a “pass out sprawled as awkwardly as possible across the entire bed” approach to sleeping.  However, I still remember finding her sweet little diapered butt sticking up sky-high in the crib when she was an infant.  There are pictures, gobs of pictures, washed out in the terrible flash of an iPhone camera.  It was just darling.

(On a side note: how did we function before digital cameras?)

Tessa, too, loves the comfort of belly-sleeping.  But finding her with her knees tucked under her butt, rather than sprawled flat on the mattress, gives me a markedly different reaction.

It’s monumental.

It’s me rejoicing – she can! She can!! She can bring her knees up under her body.  She did it!!  The practice is working!  Miss Kate and Miss Rachel (OT and PT) will be so proud!  I’m so proud!!

Every milestone is a rockin’ celebration.  I don’t even get pictures of this stuff because I’m too excited to consider a camera.  Yesterday, Tessa found herself in the mirror during her bath.  I don’t have a clue when Ellie first stumbled upon her reflection, but yesterday, I sat and stared in awe while our little peanut shyly smiled at herself.

Monumental.

This is the challenge now, when there is a child born with obstacles… reacting appropriately to the successes of others.  Everything that other kids just kind of figure out takes her so much more.  And so commiserating when the momma of a typical child impatiently wonders when her child will be able to XYZ… it’s hard for me, okay?  It is.  It just is.

And now, cuteness:

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Spotted

I don’t usually see Down syndrome when I look at Tessa, but I do catch a glimpse here and there of her almond eyes or flat nasal bridge. I’m always curious to know if people can see it in her. Not fearful or frustrated, just curious.

I mention this now because we were spotted this weekend by a fellow member of our Ds community and it kind of jolted me a little bit into our reality. It’s something that I have been thinking about and planning for (as if I have control over it) for a long time. I always wondered what it would be like to meet other moms in our Ds community at random. It hadn’t happened yet, up until now.

Really, I spotted the little boy first. And froze. We were visiting a children’s museum in Kentucky with some family over the weekend. As I walked into the open parlor, he had his back to me, but his stance gave him away. I maneuvered my stroller to get a better view and knew immediately that he was one of our community. Watching him play with his typical brother and another little boy with Down syndrome was refreshing. They played and explored as all children do. They caused the same mischief as Ellie does. They laughed and enjoyed the exhibits right alongside their typical peers.

I’m sure his mother saw me looking at him, so, silly as this may be, I tried to keep Tessa turned so that she could see our baby girl’s sweet face. I wanted her to know that I wasn’t one of the people who stare… that I was a momma looking for better understanding of who my child might be.

She approached me, asked how old Tessa was and I shared. I stumbled around looking for something to say back and settled on asking her boy’s age (four). He ran by us at that moment and she grabbed him and showed him the baby. He took absolutely no interest in Tessa and squirmed away and that was that.

I wish I had been more engaging, that I had better articulated how watching her son run and play made me genuinely happy. I was too overwhelmed in that instance that someone knew. I’m just grateful that she was kind enough to approach me, to tell me that Tessa is a doll, and that she wasn’t upset by my awkward glances toward her family.

Kentucky Mom, wherever you are, you totally made my day.

And now, cuteness:

Fish lips

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A Princess Anna dress for the birthday girl

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Silly faces with Mimi (my mom)

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John loves a good Children’s Museum visit…

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Hanging out on the moon with Papa (my dad)

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