Yo soy La Lay

adventures in family, faith, and Down syndrome

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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World Down Syndrome Day – A day in the life

Last year at this time, with my just-barely three-month-old nestled in little bouncy seat beside me, I sat down to write about life with a little one with Down syndrome in celebration of World Down Syndrome Day.  For as much as the children have grown in the past year, so little has changed.

I’ll be honest, this post about what life is like with a child with Down syndrome seems a little silly to me.  I’ve been working on it for a week now, trying to find some spin, something interesting or relevant.  Maybe it’s because she’s young, maybe it’s just because things aren’t really that different… we love our life and wouldn’t change a single, solitary aspect of it, but let’s be honest, it’s not exactly thrilling.

Our mornings still start early… I’m out the door by 5:40.  We can usually hear Tessa starting to stir on the monitor by then, but we let her stay in bed until John is ready to let the chaos begin.  We have also found that Ellie is a lot happier with life when she is woken up by Tessa’s babble rather than Daddy’s insistence that she get moving.  On the weekends, we have breakfast together.  Sundays, I make pancakes.  Otherwise, Ellie mooches John’s oatmeal.

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During the day, my kids go to our daycare provider while John and I work.  Tessa has great motivation to keep up with the kids around her; she so loves (and is loved by) the other children.  A couple of her therapists do her sessions there, otherwise she has them after I get done with school for the day at our house.

I pick the girls up in the afternoon and at home, Ellie watches The Pioneer Woman (every.day.) while Tessa plays and I finish up my work and check in with the mom groups that I am a part of through social media.

(I used to be pretty active in typical “mom” groups.  As of late, that has become… challenging.)

99% of the time, the girls get along great.  Just recently, we’re starting to witness the usual sibling annoyances:

Around 4:30, Tessa makes her way to the garage door, where she sits and signs “Dad” until he walks in the door.  We sit and eat dinner as a family every night.  Ellie is the slowest eater on the planet.  After dinner, there is almost always some kind of dancing.

Occasionally, we get the girls into the bath.  We pretend to fight over who gets to put Ellie to bed while the other feeds Tessa and wrangles her into her pajamas.  By 7:30, both girls are asleep, I’m mostly asleep, and John’s enjoying his quiet time on the couch.

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I would not change a thing.

Every 24 hour period is a blessing.  Every second that we get to spend loving each other is precious.  Our family’s minutes and hours are not much different than yours.  I hope you can see that, feel that, believe that… and include others with Down syndrome in your life right along side us and our little girl.

For more stories, visit adayinthelifewithdownsyndrome.com.

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Lesson #2: What Down Syndrome IS (and how to talk about)

This is part of the 31 for 21 Blog Challenge.  And it’s probably a little boring unless you know nothing about Down syndrome.  🙂

Lesson #2 was supposed to be Lesson #1.  We all know how that worked out.  Moving on.

The first lesson that we learned about Down syndrome when Tessa was born is what, exactly, Down syndrome is.  We received no less than four copies of the book Babies with Down Syndrome within the first week of Tessa’s life.  When she joined our family, I could flash back to freshman biology and picture neat little lines of chromosomes in my textbook coupled with the sweet little face of a child with Down syndrome.  However, that’s where the knowledge mostly stopped.  The books were welcome treasure chests of information about our baby.  Not everything inside was gold; some of the contents scared us or overwhelmed us, but it was a glimpse into where we were headed.

There are three kinds of Down syndrome: Nondisjunction (Trisomy 21), translocation, and mosaicism.  Tessa’s type, nondisjunction, accounts for 95% of cases.  It occurs equally across all races, genders, and socio-economic levels.  While it has a higher occurrence rate in older moms, 80% of babies born with Down syndrome have moms that are under the age of 35.  For a cute biology lesson on how it occurs, check out this video:

Trisomies (three copies of a chromosome) happen on other chromosomes as well.  However, many other trisomies (but not all) end in miscarriage or are fatal soon after birth.  The theory with Down syndrome is that because the chromosome is so short (and contains less genes), people can be born with Ds and live.

This link will take you to some very detailed information about which genes are on chromosome 21.  It’s a lot of science mumbo-jumbo, but it sort of explains some of the common issues that we see with Down syndrome.  Some of the genes on chromosome 21 affect cells related to muscle tone, eye sight, hearing, the heart, and blood.  So, in Down syndrome, we see higher instances of low muscle tone, poor eyesight, hearing difficulty/loss, heart defects, and some types of leukemia.

Low muscle tone (hypotonia) has been the biggest challenge for Tessa to overcome at this point.  It doesn’t mean that she is weak (weight lifting doesn’t really help in this case 🙂 ), it means that at rest, her muscles are more lax that would be considered normal and it takes her more energy to make them move than it would you or I.  While it obviously affects her motor development, it’s easy to forget that there are other muscles that are affected.  Stomach muscles, eye muscles, muscles used to swallow… they are all affected.  The opposite of low muscle tone is manifested in conditions like cerebral palsy.

It’s important to remember that someone with Down syndrome has 46 normal chromosomes and one extra.  So while Tessa certainly looks like she has Down syndrome, she also looks a lot like I did as a baby.  It’s also important to know that there are not “shades” of Down syndrome; there are no severe or mild cases.  You either have it or you don’t.

While I, personally, am not easily offended by most things, it’s important to learn how to best talk about Down syndrome within the community.  In the United States, the condition is called “Down syndrome.”  You refer to someone as a person, and if you need to reference the Ds, it is proper to say “a person with Down syndrome.”  It’s not considered appropriate to use the phrase “Downs baby” or “Down syndrome girl.”  In the Down syndrome community, it’s important to use people-first language.  We don’t appreciate the comment that our children “suffer from Down syndrome” or the notion that they afflicted with it.  It can be hurtful to some people to say things like “she barely seems to have anything wrong with her” or “you can hardly tell.”  We’re mostly a positive group and truly appreciate if you focus on our kids simply as kids, not as a diagnosis.

For more information on Down syndrome and people-first language, check out the National Down Syndrome Society’s website.

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