Yo soy La Lay

adventures in family, faith, and Down syndrome

31 for 21 Day 4: A little off the topic of advocacy

We interrupt this regularly scheduled program to share an exciting morning.  Our thoughts on advocacy will continue tomorrow, but I thought it was important to share that Tessa and I had our first conversation this morning.

At an unreasonable hour (5:56 am), Tessa was being quite loud in her crib, so we took her out and made her crawl around in bed with Mom and Dad.  After about half an hour, she got a little restless.

(All words were signed and spoken by me.  Tessa spoke “down” but just signed the rest.)

Tessa:  Da… Da… Da!  (down)

Me: Oh, you want to get down from the bed?

Tessa: Da. (points forcefully at the door)

Me:  Downstairs??  No, wait.

Tessa: Da. Eat. Milk.

Me: No, wait. No milk, no eat.  Wait.

Tessa: Cookie.

Me: Wait.  No cookie.  Wait.

(pause)

Tessa: Cookie please.

BOOM.  Tessa for the win.

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Advocacy #2: Donate

Can we just get this one out of the way?  It’s uncomfortable for me, it’s probably uncomfortable for you, but it’s advocacy with minimal effort and on a Friday night after Homecoming Week, it’s what you get.

Here is a cute picture to distract you from the awkwardness of this post:

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In all seriousness, I would urge you to carefully consider which charities you choose when sending in donations.  Some groups spend a lot of money on staff and publications and little on the cause itself.  Others promote ideas that do much more harm than good (Autism Speaks, I’m calling you out).  We have our own favorite Down syndrome charities and groups (listed below) that support our own viewpoint and mission for Tessa.  There are others, but these are the ones that we feel best support inclusion and advocacy for individuals with Down syndrome:

National Groups:

National Down Syndrome Society –  http://www.ndss.org/About-NDSS/Mission-Vision/

National Down Syndrome Congress – http://www.ndsccenter.org/mission-and-history

The Down Syndrome Diagnosis Network – http://www.dsdiagnosisnetwork.org/

Local to Illinois/Chicagoland:

National Association for Down Syndrome: http://www.nads.org/about-us/

UPS for DownS: http://www.upsfordowns.org

One more for those who are into medical research and treatment (I’m still undecided):

The LuMind Foundation – http://www.lumindfoundation.org/

Happy Donating!  🙂

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Advocacy #1: Be “In the Know”

Let’s be realistic here: the vast majority of people we meet in the street know little to nothing about Down syndrome.  I knew as much as my ninth grade Biology teacher had taught me (I was a good student, but still, not much stuck).  Extra chromosome, learning difficulties, yada yada.

I knew nothing.

While I know lots now, I still know nothing.

When I talk with other people, I have learned to assume they know nothing realistic about Down syndrome and take the approach that it is simply my job to teach them.  After all, two years ago, I knew nothing.  Why would they?  In addition to that, people who were born with Down syndrome even 10 years ago have a dramatically different life experience than those being born today.  It is important to educate ourselves if we, in turn, want to educate others.  Believe me, there is nothing that I love more than setting the record straight when it comes to information about Down syndrome.

Some facts for you… so that you can be “in the know” when someone starts talking about Down syndrome:

Down syndrome (Trisomy 21) occurs when a third copy of the 21st chromosome is present in an individual.

There are three types of Trisomy 21 – translocation and mosacism are much more rare.  Tessa has the standard type.  Usually, the extra chromosome is from the mother, but in about 8% of cases, it comes from Dad.

No, we don’t know which parent gave Tessa her special gift.

Trisomy 21 is a random and common abnormality.  It’s not a disease, it’s not contagious, it’s not preventable, it’s not predictable. It happens equally across all races, religions, and economic backgrounds.  Yes, the odds increase as a woman ages, but most babies with Down syndrome are born to younger moms simply because younger moms have more babies in general.

You will often hear about the IQ of people with Down syndrome being low to very low.  However, we know now that IQ tests do not accurately measure the intelligence of people with Down syndrome because of their difficulties with communication.  We know that with interventions and schooling and inclusion, people with Down syndrome most often live independent lives.  They can learn to drive cars, get married and some have children.  They can work, they can go to college.  They can do most anything – they just need some extra time and maybe some extra help.

Typical issues that people with Down syndrome might deal with include heart defects, intestinal issues and Celiac disease, hypothyroisim, obstructive sleep apnea, leukemia, and in the long term, Alzheimer’s disease.  Not everyone will have these issues.

It is important to know that while these occur more often in Down syndrome than in the typical population, response to treatment is much more successful if a person has Ds.

Most importantly, studies continue to show that people who have Down syndrome tend to express very high levels of satisfaction with their lives.  In one study, 99% of the over 3,000 individuals studied reported being happy with their lives and 97% like who they are.  Their families are generally content; families also experience lower divorce rates than those without children with Down syndrome.

Please stop for a moment and think about all of the people that you know.  Are 99% of them happy with their lives?

Food for thought.

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Rattled.

The man seemed nice enough while we were waiting for the elevator.  He was clearly a pharmaceutical rep, wandering around the medical offices, selling his wares.  He asked Ellie her name and, miracle of miracles, she shared it without bursting into tears.

As we entered the elevator, he furrowed his brow and said, “I don’t mean to be forward, but does she have…. problems?”

Oh Lordy.

“Oh!” I replied, “She has Down syndrome.”

“Well, that’s just… I mean, two people… You are normal, no issues, it isn’t right that you would have something like that.”

You son of a bitch.

Grace, my brain told me, give him grace.  He doesn’t know.  He cannot know.

“We love it!” I exclaimed, probably a little too brightly.  Tessa burst into tears.  He was quite clearly baffled and muttered something about how she’ll never be….  and then he stopped.  I continued to put on the cheerleader face and explained to him about how we have high hopes for her and the therapy and she is doing great.

The man literally ran off the elevator when the doors opened.

This is what I don’t understand:  Why is it acceptable to put any child into a box marked undesirable?  Why assume that anyone, but most especially an 18-month-old baby, is completely incapable of a valuable life?  And why the hell does it matter if she ends up smart or high-functioning or independent??  She very well might, but really, if she is happy… and believe me, she’s happy… I care about nothing else.

I live in an ivory tower of sorts, with loving supportive family and friends who genuinely follow our lead when it comes to raising our little lady.  If they feel anything to the contrary, we are blissfully unaware.  The crushing reality of how others around us perceive this life, just for tonight, has knocked me to my knees.

But just for tonight.

Tomorrow, the work continues.  Tomorrow, fresh-faced and perhaps well-rested, we carry on with the hope of acceptance and of inclusion and of love.  My prayer tonight is that he, that unsuspecting man in the elevator, is as rattled as I am.  I pray that we opened his mind and heart just a little bit.  I pray that Ellie remembers her mom’s response more than his words to me.  And I pray that somehow, we have made a little tiny difference.

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Lesson #28: I wish it wasn’t on the news (sort of).

This is part of the 31 for 21 Blog Challenge!  We’re almost to the end……

Frequently, news articles pop up on my Newsfeed on Facebook with headlines like Couple with Down Syndrome Chosen as Prom King and Queen or Man with Down Syndrome Opens Restaurant.  I love these celebrations of people’s accomplishments.  They are “feel good” stories.  They are inspirational, barrier breaking, door-opening.

They also make me sad.

Articles like the above represent a weird paradox for me.  I am uplifted by them because they are a reminder that there are no limits to what Tessa can do.  I’m annoyed by them because if society would just stop seeing her as less than, they wouldn’t have to be news stories in the first place.

Celebration and a heavy sigh in the same breath.

I want Tessa to be accepted by her peers and I don’t want someone on the Nightly News to think that acceptance merits a news story.

I want Tessa to do whatever she is capable of and I don’t want anyone to be surprised when she does.

I realize that we are not there yet and so the new stories are necessary.  I’m thankful that the message being spread is that people with Down syndrome can (whatever).  I know that when we first got the diagnosis, there was a tremendous amount of comfort for my husband in watching a YouTube video of a boy with Down syndrome receiving a college acceptance letter.  He probably watched it 400 times during the first week After.  I just hope that someday, this becomes so commonplace that we can celebrate in the same way we would for our typical daughter – with a dinner out at Chili’s and an extra scoop of ice cream for dessert.

Someday.

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And now, a little group selfie (are these called “groupies” yet?) fun…

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Lesson #24: She’s just another leaf

I have had very few negative thoughts regarding Down syndrome.  But I’ll let you in on a little secret: for several hours after she joined our family, I was terrified about family pictures.  Somehow, in my brain, I had decided that family and friends would no longer want to take pictures with us because they would not want to have a picture of Tessa hanging on their living room wall.

This is, without a doubt, the most ridiculous thought that I have ever had, bar none.

(Except for maybe the night in college that I thought a bottle of Jack Daniels and some Dixie Cups would make for a good night.  But that’s a whole other story.)

Since she arrived, Tessa has been just another leaf on the family tree.  She’s different, but we all are.  And not one person in our family has taken her as anything less than that.

Being a part of the community of families with children with Down syndrome, I hear a lot of stories.  Most are positive.  Sometimes, however, a mom comes looking for advice on how to deal with family/friends who are struggling to accept her child.  There are families who refuse to acknowledge the baby, or who won’t hold it, or those who treat the child differently through words and actions.  My heart really aches for those families.  It also overflows with love and gratitude for my own.

(Just to clarify – when I say “my family,” I am talking about the whole dang thing, from both John’s side and mine.)

When Tessa was born, I did a really poor job of allowing other people to process our new situation in their own way.  No grieving was allowed on my watch.  Whether I should have let go of that control is a question for a different day, but in reality, I don’t think anyone would have grieved anyway.  Because this is how life really is:

Tessa has four doting grandparents, who love her fiercely and in completely different ways.  They are teachers, snugglers, cheerleaders, and many times, the glue that keeps John and I running smoothly when life is exceptionally busy.

She has aunts and uncles who hold her and play with her as they would any other child.  She adores them.  If there is one thing that we have learned about Tessa’s personality, it’s that once she has attached herself to you, her eyes will look so deep into your eyes that you’ll swear she’s looking right at your soul.  All of her aunts and uncles get those looks.

Tessa’s cousins make her giggle. They poke and prod her, motivating her to get moving.  They give her kisses and pull her hair and sit on her and take her toys just like they would with any other child.

I could not ask for more.

(this pic was taken by my fabulous cousin, Jessica.  It’s blurry now for lots of reasons. 😉 )wdowiarz pic

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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 #18: Little babies can do Speech therapy!

This is part of the 31 for 21 Blog Challenge!

So, first of all, this happened:

photo 1 (6)Ellie was enthralled with her potty costume… Once her cousin Jimmy came over dressed as Curious George, it was over.  Somehow, Ellie convinced him to shed his costume so that she could wear it and then the two of them had a grand ol’ time pretending to use the potty.  Kids are weird.

A rough transition here…. on to Speech.

It was very perplexing to me that we could start Speech therapy on a 6-week-old baby.  However, with Tessa unable to take her bottle in an upright position, we were set up with a type of Speech therapist who specializes in Oral-Motor therapy.  Oral-Motor therapy teaches a child awareness, coordination, and strength of the muscles of the mouth (all related to that low muscle tone that we keep talking about).

(On a side note, because I know some are curious, no, my children have not really been nursed.  Ellie got 5 days and Tessa got 12.  That’s a whole other story.)

During a therapy session, we work a lot on building strength in her core muscles.  When you think about eating, you use muscles throughout your abdomen, neck, and head to eat effectively.  One of the ways that we can improve Tessa’s eating skills is to build strength throughout her body so that she will be stable when she is sitting and can begin to use her hands to move food to her mouth.  This part of the session focuses on sitting and bringing toys to the mouth.

We also work on direct input to the mouth itself.  We started by providing input with a tool like this:

We use it to teach her tongue and gums what different textures and pressures feel like.  We also work on stimulating her tongue to move around the mouth to react to food.  Lately, we have graduated to putting small crumbs of graham cracker or animal cracker on the sides of her mouth so that she learns to move the food and to swallow it.

We always end our session with feeding.  Well, I shouldn’t say always.  Sometimes, Tessa gets really mad when she doesn’t get fed first.  And sometimes, she decides that she has had enough and just closes her eyes and goes to sleep.  However, we like to do some “spoon work” with the therapist when Tessa will let us.  🙂  We have found that a forward-facing presentation of the spoon (how you or I would put a spoon in our mouth) is challenging for her, so we present the spoon sideways.  However, we also continue to work on the forward presentation.  We are teaching her to get the food off the spoon and swallow.  She also has a habit of sticking her tongue out while she eats, so we have to wait until she puts her tongue in the right place before allowing her to take a bite.  Remember that a tongue is made up of a lot of different muscles, so her low muscle tone affects her ability to keep it in the appropriate place and use it effectively.

Our next steps with Tessa are to introduce a straw cup (recommended over a sippy cup) and to slowly increase the variety of textures that she will tolerate. We have begun to work on the actual “speech” part of Speech therapy with practice mimicking noises,  We have introduced signs for more, all done, eat, and drink.

The most important thing to remember is that while we have made modifications for Tessa and we do have to make a conscious effort to teach her some skills that may come naturally to others, our life is not work.  We don’t live in a constant therapy session, always practicing, practicing, practicing.  When we can, we do these things.  That is all.  There are weeks when we do a lot of practice.  Sometimes, we don’t.  Eventually, we’ll get there.

An excellent resource that I have just started to dive into is Early Communication Skills for Children with Down Syndrome.  Click on the blue link to find it on Amazon.

Blurry, but perfect…

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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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