New School, New Adventures

Tertia has been in High School now for a month, and last night I finally had a chance to meet her teachers.  Some of them, anyway.  Everytime when Steve or I introduce ourselves, we get "Oh, I LOVE Tertia!"  This is a great thing to hear, and I think it is genuine.  It makes it easier, putting her on a bus at 6:50 and sending her to the great unknown down the street.  Here's what we do know: she's supposed to be in an "intensive academic" special ed classroom, but it's really more "life skills" in emphasis, which would make me uncomfortable if that was the only place she went.  But I like her teacher a lot.  And she is the only girl in her class, which is a little weird, but apparently she's taking that and running with it.  I hear about her empathy, her love of drama, her ability to navigate her way around the school.

 She dressed up for her birthday.  It is really early when she has to get on her bus.  Some of the paras gave her presents and a chocolate cupcake... she was a little embarrassed to let me see the Disney princess presents, because she knows she's supposed to have outgrown them.  But I don't mind.  She is in a "learning support" reading/literacy class -- the teacher whispered in my ear "she probably works harder than any of the others!"  And she is in the concert choir, which is her favorite class:

I worry about her ability to blend in with the group and follow the music.  She is excited about her music and wants to do her best.  She also has an art class with the general population.  I have been so pleased with how she is getting herself up and even packing her own lunch some days.  Maybe we can keep this schedule up.  It has been a hard month, with catching up from travelling, and teaching being exhausting and demanding.  I even missed the Down syndrome Buddy Walk, something we've participated in for the last 3 years and loved.  Sometimes it felt like Tertia is having to take a back seat to other demands in my life, and I hate that... even though she doesn't ever complain.

 Birthday number 15 was celebrated with spaghetti and a chocolate cake, garnished with strawberries.  A deep breath before blowing out the candles.

Somehow 15 years ago I never foresaw High School.  I don't know why.  The beginning of the Down syndrome adventure was all about babies and medical tests and therapies, combined with a lot of worry about the future.  But somehow, I never knew the future would be so endearing.  She's going to be okay.  She's rocking High School.

October is Down Syndrome Awareness Month.  We'll try to make it a good one for her.

3-21 World Down Syndrome Day

It's one of those under-appreciated holidays today: World Down Syndrome day, and I'm posting in honor of my daughter, "Tertia," who is 14 now and never fails to make my day brighter, just by being who she is.  At birth, the nurses said, they could tell she had an extra copy of chromosome #21 just by her "floppiness" and low muscle tone, and a certain slant to her eyes.  It took me a little longer and a lot of research before I could understand and accept that diagnosis, but I can say in all honesty now that the Down Syndrome diagnosis is only a small piece of our daily lives.  However, it's a piece that we can't ignore.  It's always there, and how we respond to the unique challenges the diagnosis brings will have a measurable impact on her life.

Tertia goes to a special education class for 8th grade with a more intensive academic focus than some. She has some classes (choir, dance, art) with the general population of her school and has genuine friends in that group as well as her own special class.  As you can see, she still is in her Disney princess phase, but fills the calendar with notes about concert, plays, and friends' birthdays.  Speaking of birthdays, she has an uncanny ability to remember them.

Things to be grateful for:

• She was born in the information age.  Answers to questions about medical care, education, social services and support groups are only a few internet searches away.  
• The Down syndrome community itself is generous and supportive.  While I was still in the hospital, unsure how to process the information I was getting, I received calls from two different moms whose children had the same diagnosis, with lots of realistic encouragement for me.  It was so much better than the printed booklets the hospital handed out that there is simply no comparison.  I've been able to pay that forward a few times for other new moms and there is no better feeling.
• No routine institutionalization anymore, at least not in America.  I just spoke with a man my age who never met his own sister until he was an adult himself.  I can't even imagine.
• Modern health care, advances in education, and overall, a more tolerant and accepting attitude toward people who are "different".  

Things to be concerned about:

• Prenatal testing.  It is possible now to diagnose Down syndrome very early in pregnancy, and frequently those mothers experience subtle or not-so-subtle encouragement to abort such a pregnancy.  I heard that an expert in Denmark proclaims his country will be Down syndrome free in another decade or so.  As if that's a good thing.
• Newborns with Down syndrome in most modern countries have a very good expectation of a happy, healthy and productive life.  But in some countries, in Eastern Europe particularly, institutionalization at birth is still the norm.  Unless these children are adopted (usually not by someone from their birth country) they face transfer from orphanage to mental asylum sometime before they turn 18, and almost certain decline and death shortly after that.  This is a tragedy that few in America are aware of.  Check out Reece's Rainbow for more information on how anyone can help fund grants to adoptive parents.

The Future of Down Syndrome

Some of my more recent followers may not know this, but I frequently blog about Down syndrome and engage in a certain amount of advocacy designed to raise awareness about this genetic disorder that affects so many individuals, including my third child, blogname "Tertia."  She was born with Down syndrome nearly 14 years ago and has taken the world by storm, in her own way, ever since.  I think of her as one of God's spies.  And while my children are too old for me to be primarily a "mommy blogger," I still see Down syndrome advocacy as an important part of my calling.

You may have heard the recent news of a scientific breakthrough that can switch off the extra chromosome that causes Down syndrome in a test tube.  While any potential therapies resulting from this are years away, and while we are only beginning to raise the complex ethical questions that will need to be answered before we could go ahead with such therapies (Would it change the essence of the individual?  What are the risks?  How would it be tested? Would you "fix" your child?), there is no denying that this news comes at a critical time. 

I know I keep my blog lighthearted most of the time, but the reality is sobering. We live in an age of medical miracles, when individuals with Down syndrome have the greatest possible expectation of high quality of life and long lifespan. The irony is that fewer children are being born with Down syndrome as a direct result of the prenatal diagnostic tests commonly available now.  With the latest generation of tests designed to target the disorder even earlier in pregnancy, the numbers are dropping alarmingly.  Somewhere between 50% and 95% of parents (the numbers are understandably fuzzy) decide to terminate a pregnancy with a Down syndrome diagnosis.  The reasoning for this is even more fuzzy, but at least in part it must be due to overwhelmingly negative portrayals of Down syndrome by medical professionals and in the media.  Even the media has been turning around in recent years, with concerted campaigns to "end the R-word" and positive portrayals of characters with Down syndrome on shows like Glee (perhaps the only likeable characters, actually).  I don't know what doctors are saying to parents these days, but I strongly suspect they put on their serious face for delivering bad news just as the hospital pediatrician did when he spoke to me nearly 14 years ago.  I encourage medical professionals to follow the lead of Dr. Brian Skotko, who has made it his mission to promote a more well-rounded approach by the medical community that takes positive information into account.

What experts fear is that the pool for potential therapeutic treatments (and for the scientific funding to develop them) will not even exist in the near future, so the treatments won't be developed.  There is a concerted effort in the Down syndrome community to promote positive treatments and counteract the overwhelmingly negative, insensitive, out-of-date information about Down syndrome that is commonly distributed to new parents.  Read the excellent series (perhaps misnamed) A Brief History of Down Syndrome at Down wit Dat, and you will realize that we are only a generation removed from routine institutionalization of people with Down syndrome.  Two generations separate us from Hitler's eugenics/extermination program "Aktion T4," which murdered thousands of human beings on the grounds that they were not fit to live in a perfect society.  It is not melodramatic to say that this generation might see the effective elimination of Down syndrome as a medical specialty.  The individuals will remain, but whether in sufficient numbers to command the attention of the community is doubtful.

It's easy to get cynical when the system only works if you follow the money.  I'm glad that people with Down syndrome tend to be naturally anti-cynical themselves, and act as a kind of antidote to an overly cynical society.  Tertia has benefitted greatly from educational therapies that seem common-sense now, but had to be fought for to put in place.  (And by the way, she just finished reading Harry Potter and the Deathly Hallows, on her own). Physical therapy started when she was a baby and is light years ahead of what it was a generation ago.  She was fortunate enough not to need open-heart surgery, but it was there and state-of-the-art, if her heart defects had been any worse.

I think that God's purpose in people like Tertia is not affliction or suffering, but rather a testing of the hearts of those who interact with them.  Mother Teresa reportedly called the disabled "professors of love."  How does our culture do in learning the lessons they teach?  There are heartwarming stories like this one, and heartbreaking stories like the death of Ethan Saylor that highlight just how far we have to go, and how complicated the work is.  I've been working on this blog post for three days now and I know I won't resolve anything by it.  But I'd like it, if you've stuck it out this far, if you would think a bit about how you, personally, can make the world better and not worse for people like Tertia.

Edited 7/23 - Since I wrote this a few days ago I came across a network of Down syndrome blogs and it seemed like a good idea to post this at their blog hop.  Please check out the link for more individual snapshots of what it's like raising a child with Down syndrome.  And I hope to make it a regular feature of my own blog from now on.

"High Functioning"

"High functioning Down syndrome."  I've heard those words a lot from people describing my daughter, and I'm not really sure how to take them.  Should I be complimented that they think she's better off than most people with Down syndrome, or offended at the soft bigotry of low expectations that implies it is unusual for people with Down syndrome to achieve what she has?  She's fortunate enough to have benefitted from good medical care, early intervention, and education... but those are all standard procedure for individuals with Down syndrome now.  I don't really know, but I almost think "high functioning" is a backhanded compliment, and I don't use it myself.

Instead, I want to celebrate in today's post some of the things my daughter does with excellence.  Not just "excellent... for Down syndrome."  Excellent for anyone.  It's a pretty long list.  21 items long.

• She gives the best hugs.
• She loves unconditionally.
• She never holds a grudge for longer than a few minutes.
• If someone needs prayer, she keeps praying for that individual until told she doesn't need to anymore.  She will remind others to pray for that person too.
• She is generous and compassionate.
• She is a fantastic hula-hooper.  Her little sister might be as good, but until they came along we were a completely incompetent hula-hooping family.



• She reads.  And she loves to read.  And she reads pretty close to grade level.
• Back in the day, she was the quickest of our 4 kids to get the concept of potty-training.
• She can amuse herself for an extended period of time without help or supervision (this wasn't always the case).
• She sings in the choir, keeps her place in the music and keeps her poise in front of an audience.
• She finds her place in the hymnal and follows along with every hymn.
• She knows all the dance moves for "Thriller."

• She remembers her schedule, knows when she has to be where at school and how to get there.
• She has always been good with "calendar math" and could probably find work as an appointment secretary someday.
• She remembers all the important announcements that the other middle-schoolers forget to tell their parents, like signing the permission slip for the school social.
• She remembers people's birthdays.  She remembers the birthdays of her 2nd grade teacher and the little boy who was in her class in 4th grade.  She reads the church bulletin and makes sure to wish everybody listed in it a happy birthday or anniversary.
• What she doesn't know about Disney princesses is not worth knowing.
• She doesn't care if some other 13-year-olds have outgrown Disney princesses.
• She laughs easily.
• She knows a lot of people.  She is always running into friends from school at Target or places like that.  They come up and give her hugs.  This doesn't strike me as weird, because it is obvious they genuinely like her.  The rest of us barely survived through 7th grade... she seems to be thriving.
• She gets on the bus every morning with a smile on her face; she gets off the bus every afternoon and runs, beaming, to give me a hug.
   

World Down Syndrome Day

Tomorrow is World Down Syndrome Day.  Trisomy of the 21st chromosome or "Trisomy 21" = 3/21.  Get it?  There is beautiful symmetry in those numbers, if you think about them.  I don't usually wax poetic about math, but 3 and 7 are both numbers representative of perfection.  Three times seven, a trinity of perfection on the 21st chromosome, and children with Down syndrome get it threefold.  They are, indeed, genetically blessed, and I wonder sometimes why the world sees them as imperfect. 

The world does see them as imperfect, unfortunately.  Only 10% of those diagnosed prenatally are born... and that's not because of any medical problems, either.  Recently a "wrongful birth" lawsuit awarded nearly $3 million to a couple whose daughter was born with Down syndrome after testing indicated she did not have it.  They would have had her killed prenatally if they had known.  Now we have even "better" tests, giving results earlier in pregnancy, and some experts predict that it may be possible to create a world without Down syndrome.  Funding for research in Down syndrome is hard enough to come by; if the population is reduced much more, it will most likely dry up altogether.  The tragedy of all this is that, of all genetic disorders, Down syndrome is by far the easiest to live with, and live well.  The days of routine institutionalization (at least in the U.S.)  are so far in the past, and positive role models with Down syndrome are so easy to come by, that I truly do not understand why the negative stereotypes persist.  If I can do a little with this blog to help that, all the better.

At least in the Western world, individuals with Down syndrome are provided the best medical care once they are born, and with intensive education, they are living lives that are productive and independent.  I remember being surprised to find out that some people were a bit envious of me for having a baby with Down syndrome.  I discovered why that might be when she was the mildest-tempered of all my four children, the quickest to potty-train, and the most unfailingly cheerful.  For a lovely article with some perspectives on children with Down syndrome and why they should be welcomed, check this one out.

Some other thoughts to check out:

Why you should avoid the "R-word" as a joke or insult.

The beautiful story of Katie, adopted from Eastern Europe at age 9 weighing less than 11 pounds.  She has doubled her weight in a few months with her forever family and has opened the way for other neglected children to be adopted as well.  Reece's Rainbow is an adoption ministry specializing in facilitating international Down syndrome adoptions; many children languish in orphanages and even adult mental institutions who would blossom and grow with a loving and stable family.

Reasons to celebrate Down syndrome.

Enjoying the Small Things, capturing the beauty of these children.

Noah's Dad, who blogs about the joys and challenges of bringing up a very special baby.

Then He took a little child and set him in the midst of them.  And when He had taken him in His arms, He said to them, "Whoever receives one of these little children in My name receives Me; and whoever receives Me, receives not Me but Him who sent Me."

          Mark 9:36-37