Tag Archives | trisomy 21

Down Syndrome In Our Midst

Finn is Star of the Week at school this week, and we will be presenting this poster in his class Monday morning.

Finn is Star of the Week at school this week, and we will be presenting this poster in his class Monday morning.

Usually when I write about Finn or Down syndrome, I write with the unconscious assumption that most people who will read it are people who have followed my blog for a long time and are familiar with our family and how Down syndrome plays out for us.  That last post, though, about the r-word, made it pretty clear that there are people who have only recently stumbled across my blog.  The fact that I am still, after all this time, explaining why the r-word is offensive, and actually getting sucked into arguments with commenters about it tells me that some of you are new here.  So, I’d like to tell you about Finn and about Down syndrome from this family’s perspective.

When Finn was born and we found out that he has Down syndrome, it was a very sad time for us – mostly for me; Michael took it more in stride than I did, maybe because he had worked in the disability community for years and it therefore didn’t scare him so much, or maybe because he’s just generally more laid back than I am.  Anyway, the sadness that cast a pall over our family during that time was undoubtedly compounded by the fact that Finn faced almost immediate surgery and had to spend almost two weeks in the hospital, mostly away from us.  It was really, really hard to hand our tiny, helpless newborn over, and then to watch him struggle to recover from surgery, and to not even be able to be with him all the time.

In the beginning, Down syndrome felt like this big, scary thing – I honestly had no idea what it would mean for Finn or for our family, but it all seemed very bleak back then.  That bleakness really was chalked up to the big unknown.  I’m sure I had some preconceived ideas about Down syndrome, but they were fairly vague, as I had never so much as met a person with Down syndrome before in my life.  I have a vague memory from my childhood of being in a restaurant or somewhere with my mother, and her pointing to a person with Down syndrome and saying the person was a “Mongoloid.”  Other than that – I had some inkling that they were prone to heart defects, that they were mentally retarded, and beyond that, I really didn’t know.  Even “mentally retarded” was really a big mystery to me.  What exactly did it mean?  My biggest fear was that it meant he might be utterly non-functioning and would never recognize his family or be able to connect with us.

Down syndrome has turned out to look very different from what my worst fears were.  Whatever sorrow and fear we had at one time left us a long, long time ago.  Finn is a little boy who makes us laugh, who frustrates us, who loves music, and dances with abandon.  He can be sweet and charming, and he can be a bratty pain in the ass.  Contrary to popular belief, kids with Down syndrome are not happy all the time, or even happier more of the time than typical kids are – at least Finn isn’t.  He’s actually a pretty moody kid and is prone to tantrums.  He gives excellent hugs and sloppy kisses, but he’s no more loving or affectionate than any of my other kids, so he’s busted down that stereotype as well.  Also, he does not have some sixth sense that enables him to tune into other people’s moods and emotions more keenly than any other kid I’ve ever met, so I call bullshit on that myth, too.  Is it especially challenging to be his parent?  His mood-driven behavior can be challenging to deal with.  It is often a challenge to understand what he is saying, because he has poor articulation and enunciation.  That’s pretty typical of Down syndrome.  I wish he were potty trained, but he is not at this point in time.  Mostly my feelings about that have to do with his personal dignity and having non-family adults at school (his aide) having to change him, and therefore have intimate contact with him.  I have trouble with that.  Changing him myself doesn’t faze me – I’ve been up to my eyeballs in diapers for almost 12 solid years.

Some kids with Down syndrome have very serious health issues, and that can present some big challenges and a lot of stress.  That has not been our experience.  Finn had one major surgery at birth to correct an intestinal malformation (something actually pretty simple and straightforward, but that forty or so years ago, he would have died from because nobody would have been likely to fix it), he’s had a handful of other minor surgeries and procedures, a few illnesses (although none that have required hospitalization), and that’s it.  Overall, he’s a healthy little boy.

The biggest challenge by far pertaining to Finn and Down syndrome is the prejudice, outdated notions, and stereotypes that are prevalent in the world we live in.  I cannot stress that enough: the biggest challenge we face, and without a doubt the thing that will cause Finn more suffering in his life than anything else, is prejudice.  It comes in many forms: the r-word being thrown around; people defending their right to use the r-word, or arguing that it’s not offensive; pity; well-meaning people believing that he doesn’t belong in a general ed classroom because it takes away from the “regular” kids, or isn’t fair to the teacher, or he can’t keep up anyway, so what’s the point?; adherence to generalizations and stereotypes; a belief that it takes “special” parents to raise a “special” kid (as if he’s harder to love than a typical kid).  Some prejudice is subtle, some is blatant.  It all hurts.  It all makes our life harder and Finn’s life harder.

One of the first questions I often get about Finn is, “Is the Down syndrome severe?” or “Is he high functioning?”  Listen, Down IMG_3962syndrome is Down syndrome is Down syndrome.  What I mean is, if a person has it, they have it.  It’s like pregnancy – it’s all or nothing.  There is no such thing as “severe” or “mild” Down syndrome.  How it manifests varies from person to person.  Are some people with Down syndrome more severely or mildly affected?  Yes.  Which brings me to the “high-functioning” question.  When people ask me this, I answer honestly: “I don’t know.  Oh, and also?  I don’t give a shit.”  Is he high-functioning compared to what?  Listen, there are things he can do, and things he can’t do.  There are things he will one day be able to do, and other things he will never be able to do.  He’s five years old right now; I have no idea what he will be capable of in a year, or five years, or twenty years.

I don’t talk or write much about Finn’s achievements.  It’s not because there’s nothing to write or talk about, it’s because I refuse to value him or encourage anyone else to value him based on his abilities or accomplishments, or lack thereof.  That’s what I mean when I say that I don’t give a shit if he’s high-functioning or not.  It doesn’t matter to me.  He’s my kid.  I adore him (even if he bugs the shit out of me sometimes), and am fiercely protective of him.  I want people to understand that he is a unique, complex human being, and is intrinsically worthy and valuable based solely on that.

I have a lot of trouble with this belief that having a kid with Down syndrome is this big tragedy, or even this sense that I earn extra admiration because I so stoically deal with having a kid with Ds.  I am dealing with various challenges with some of my other kids who don’t have Down syndrome or any other disability – things that stress me out and keep awake at night with worry.  Being a parent is like that – it really doesn’t matter if you have typical kids or atypical kids.  Ruling out Down syndrome may rule out certain risk factors, but risk factors certainly aren’t guarantees or predictions anyway.  It may rule out certain realities, but other realities are still there.  Life is beautiful and wonderful and gut wrenching and messy – no matter what.  Our life would not be any easier without Finn in it, without Down syndrome in it.

Our life really isn’t hard – it’s just life.

World Down Syndrome Day

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The following was originally posted last year on World Down Syndrome Day.  Reposting because it still holds true.

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Today, March 21, marks the ninth annual World Down Syndrome Day, a day now recognized by the United Nations as a day of awareness and celebration of Down syndrome all over the world.

There is a lot of pressure on us parents of children with Down syndrome, on us advocates, to advocate our hearts out today – to raise a flag, to shake our fists, and to say something profound.

Frankly, I’m weary. Weary that we’re still fighting the same fights for compassion, respect, and inclusion. Basic human dignity. Weary that behind the scenes, we have trouble agreeing on what, exactly, we should be advocating for.

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All I want is to raise my kids in a world that’s going to see all of them as valuable human beings. All I want is to be able to go somewhere – anywhere – without constantly being on edge, waiting for someone to drop an R-bomb. All I want is to be able to take my kid to the doctor’s office and not have to educate them about Down syndrome facts and myths. All I want is to be able to count on my kid being welcome to attend the same school his siblings attend. All I want is for people to see my kid as a kid – yeah, a little different, but not some lowly or otherworldly creature who should be disdained or fawned over. All I want is for people to see me as just a mom – one who is defined far more by the sheer number of kids she has than by the fact that one of them sports an extra chromosome.

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I wonder if there will ever come a day when our advocacy will no longer be necessary.

He’s Not a Birth Defect.

I came across this article on the front page of MSN when I signed onto my laptop this afternoon: New Blood Test is Better At Finding Birth Defects, Study Finds.  The blood test isn’t really news anymore; it made its debut on the market a couple of years ago (I wrote about it here).  I guess what’s news is that now a study has been undertaken to determine just how accurate the new blood test is – and hot damn, it’s pretty accurate.  So, every pregnant woman in the US can now rest easy and know that she doesn’t have to give birth to a birth defect.

Well, actually, that’s not true.  Not until insurance companies can be convinced to routinely cover the cost of these blood tests, which apparently ranges from around $800 to $2,000 a pop.  And how will the companies that have developed these tests convince insurance companies to cover the cost?  By convincing insurance companies that it makes economic sense to cover the cost of the tests (you don’t really think your health insurance carrier gives a flying fudgesicle about your actual health, except to the extent that your actual health affects your insurance carrier’s bottom line, do you?).  And as much as the companies that have developed these tests tout them as providing “information” and “peace of mind,” the way they’re doing that is by helping expectant parents (and thus, insurance companies) weed out birth defects that could be potentially costly.

I wish I could read these articles with some emotional detachment, I really do.  Frankly, it’s no fun at all to read these things and feel the sharp slap of a reality check: people see my son as a birth defect – a preventable birth defect.  People don’t want to have a kid like mine.

A 29-year old woman is mentioned in the article and said to have been “ecstatic” when she underwent the new blood test and got the “great news” that her fetus was “healthy.”  Apparently, she tested specifically with Edwards syndrome (trisomy 18) in mind – I admit that it’s easy to understand the relief someone would experience at learning that their child-to-be did not, in fact, have a condition that is generally not compatible with life.  Why is Down syndrome (trisomy 21) grouped together with Edwards syndrome and Patau syndrome (trisomy 13) for purposes of these prenatal tests anyway?  Merely because they’re all trisomies and are detectable?  Because the fact is that Edwards syndrome and Patau syndrome are really in a different category, as they are generally not compatible with life, whereas Down syndrome is very compatible with life.

From the article:

Doctors say that advances like cfDNA simply provide more accurate information. “The first step is being able to reliably identify those pregnancies that are at risk for abnormalities,” says Dr. Michael Greene, Chief of Obstetrics at Massachusetts General Hospital. “What if anything the patient wants to do with the information is up to them.”IMG_3680

But see, that just isn’t true.  These tests do not “simply provide more accurate information.”  How that information is presented to expectant parents, how they are counseled by their medical care providers, right down to the language used – it all has a huge, huge impact on what patients will do with the information.  So, to imply that these tests and the medical community that advocates their use and administers them are merely providing a service to expectant parents – it’s just not true.  The whole situation is so loaded with biases and misinformation and dollar signs – the deck is so stacked against fetuses with Down syndrome, it’s just tragic.

Sometimes I feel so beaten down by how hard I have to fight just to get the world to see Finn as a person.  I know all the prenatal tests were not developed with Finn specifically in mind, and yet, how can I not take it personally?  Finn has Down syndrome.  These tests were developed and are utilized as a means to prevent kids like Finn – kids who are seen as defects.

As I was fuming after I read that article earlier today, it hit me that none of my other kids has to prove they are valuable human beings; I’ve never had to fight for any of my other kids to be given the same opportunities as their peers; I’ve never had to ask anyone to stop using derogatory language that targets my other kids; I don’t have to worry about anyone looking at any of my other kids and thinking to themselves, “Boy, am I glad I don’t have a kid like that”; and I don’t have to sit and stew over tests being developed to prevent future occurrences of kids like any of my kids except Finn.

Finn

Well, the school year is more than halfway over, and it’s been awhile since I wrote about Finn.

School is . . . eh.  I don’t know.  For the most part, fine, but definitely not everything I dreamed it might be for him.

Academically, I really don’t know what – if anything – he’s getting out of it thus far – despite this which he was wearing when I picked him up yesterday:

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All the TKers and kindergarteners had these on in honor of passing the one hundredth day of school.  Because, as we all know, school makes you smarter!  Except that it doesn’t.  But what an awesome message to pound into these little heads!

I digress.

Anyway.  I had an informal meeting with his teacher a while back to discuss modifications to the classwork and the homework for Finn.  Fortunately, it does seem that appropriate modifications are being made to the classwork for him.  But not the homework.  Modifying the homework is on my shoulders.  Not a big deal, you might think, right?  The problem is that, no, it shouldn’t be the parents’ job to modify any of the schoolwork.  Adding to the issue is the fact that I see so very little value in the homework that comes home with him, and I think it is absolutely ludicrous that five-year olds should be getting homework – especially daily homework – in the first place.

I’ve been playing nice and modifying his homework as I see fit, initialing his little homework calendar like a good parent, and turning it in, but god almighty does it get my hackles up.

Recently, I’ve started a new reading program with Finn.  You might remember that wayyyyyyy back last year, I wrote about teaching Finn to read.  It has become increasingly clear to me that he is not going to learn to read in school, because they don’t seem to have a clue that visual learners require different methods.  If he learns to read (and I trust that he will), it will be through my efforts.  Anyway, last year when I began that odyssey, I went with a program called eReadingPro.  It came highly recommended to me by a friend who had used it with her daughter who has Ds.  In the end, it just didn’t turn out to be a good fit for us – mainly because many of the words it introduced had no significant meaning for Finn, and because the method associated with that program is fairly rigid, requiring lessons three times a day, every day, and I just couldn’t keep up (this is why I could never homeschool – I just do not have the discipline or stamina).

A month or two ago, I got wind of another reading program for visual learners and kids with learning disabilities: Reading About Me.  What I like about it is that the words it introduces are words the instructor (me, in this case) chooses that have actual meaning to the student (family members’ names, everyday objects that are familiar to Finn, etc.), and the lessons are very flexible.  Of course, the more often we do the lessons, the quicker he’ll catch on, but the method allows for flexibility and is very centered on the student enjoying the lessons so that it doesn’t feel like a battle.  Also – and this is one of the best parts – this program allows for periodic “probing” to see which new words the student has acquired, and keeps progress reports in the database.

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This could be invaluable with respect to district assessments and IEPs, know what I mean?  Anyway, check it out if you’re interested.  We’ve been using this program for a couple of weeks, and it’s fun, and Finn is recognizing words fairly quickly.

So, back to school.  I’m almost inclined to wash my hands of the homework that gets sent home with him at this point, seeing that he and I are spending a fair amount of time on this reading program.  This seems a lot more valuable than busy work like “Use your shapes to draw a snowman!” or “Count 7 things around the house that start with the letter M!”  On the other hand, I already know that if I don’t play along, things go south.  Boo.

Early last week I received an email from Finn’s teacher requesting a meeting to “discuss some new behaviors Finn has been displaying.”  Not a note any parent wants to receive.  So Michael and I met with his teacher after school that day and were told about the aggressive behavior Finn was exhibiting towards one particular little boy.  Mostly pushing him, but apparently there was one incident wherein Finn choked the little boy – actually (as it was described to us) put his hands around this little boy’s throat and squeezed, leaving “little marks.”  According to the teacher, the little boy had never done anything to provoke Finn.  When these incidents occurred, she would remove Finn from the situation and sit him down and talk to him about treating our friends nicely.  By the time we had the meeting, she was keeping the two of them separated as much as possible.

It was upsetting to hear.  The kids certainly rough-house at home, so it’s not hard to imagine that Finn might equate pushing as just horsing around – I really don’t know.  The choking, though – baffling.  I have no idea where he would even pick something like that up.  The whole thing left me at a loss as to what to do.  Fortunately, the teacher was pretty low-key about it – concerned, but not making a huge deal out of it.  I took it to Facebook and got a lot of input from other parents of kids with Ds, some suggesting that we immediately request a Functional Behavior Assessment to evaluate the aggressive behavior (even our attorney suggested that when I shot him a quick email).  But there was something that told me that that would be overreacting.  The truth is that Finn has dealt with a whole lot of upheaval with regard to school in the last month: he was away from school for two weeks for winter break, which was a deviation from the routine he’s become accustomed to; when he returned to school after break, it was to a new aide, as his aide had suddenly taken a new job elsewhere, and this new aide was only a sub until they found a new permanent aide for him; after a week with the substitute aide, he started with a new permanent aide; and his teacher was absent for a couple of days, so there was a substitute teacher in the class.  I’m not saying any of that excuses Finn’s behavior, but it might explain it a little.

In any case, we decided not to request a FBA just yet, and see how things went as time passed and he hopefully got resettled at school with all the new stuff thrown at him.  And, apparently there have been no more incidents since our meeting with his teacher, so I’m keeping my fingers crossed.  We’re also going to start sending a communication notebook back and forth between home and school each day – which we probably should have been doing all along.

Finn’s expressive language is exploding.  He is talking so much more lately, stringing words together to form phrases and short sentences, and expressing himself conversationally.  It’s pretty amazing.  This is not to say, of course, that you can actually sit down and have a deep, meaningful conversation with him, but he just seems either more interested or more able lately to express himself.  Intelligibility remains a big issue, as I suspect it always will.  His SLP and I have been having some interesting discussions about all that.  It’s just very intriguing to me listening to Finn speak and trying to analyze his particular quirks and patterns.

In other news, he has his first loose tooth!  I was brushing his teeth the other night and he pointed to his mouth afterwards and said, “Owchie.”  I looked, and one of his bottom front teeth looked a little more misaligned than usual, so I touched it, and sure enough, it’s wiggly.  I assumed that because his teeth came in later than all of my other kids’ teeth, that he would also lose them later, but it looks like he’s actually going to start losing them sooner than any of the others did.  Bittersweet.

Last but not least, we’ve signed him up to play T-ball.  In the regular league.  I know that if he continues to play that eventually he just won’t be able to compete with the typical kids, but we figure, hey, this is T-ball.  They’re all running amok at this stage.  I’m very excited – I really think this will be good for him, and I think it will be good for all of us, his family, to see him in an inclusive setting like that and have a regular opportunity to cheer for him for something that is all his, you know?  Truth be told, though, I am also nervous.  Nervous about how his coach will react and treat him when he sees him and realizes he’s different.  Nervous about how the other parents will respond, too.

And now, it’s just about time to pick him up from school.

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That Mythical, Magical Chromosome

There’s a lot of talk lately about the magic of the extra chromosome that results in trisomy-21, or Down syndrome.  I don’t think this is a new development by any means, but lately it just seems like a prevalent topic – and I’m not talking about misguided stereotypes held by the general public, I’m talking about parents of kids with Down syndrome.  Some of the very same people who advocate for equality and inclusion, who promote the whole “more alike than different” campaign, also insist that there is something about that extra chromosome that endows people with Down syndrome with extraordinary qualities and abilities: they’re more pure . . . they more intuitive . . . they’re more loving, and their love is more pure . . . they’re more compassionate . . . they’re more empathetic . . . they’re more forgiving . . . they can see inside a person, past the BS . . . plus, they’re more stubborn, and more defiant.  I’ve heard it referred to as “the love chromosome.”  Oh, and all the talk about them just being so special.

Enough already.

I’ve never liked this kind of talk – not even way back when I was new to this whole Ds thing and Finn was just a squalling infant.  I remember reading Gifts and seeing a blurb on the back cover that read,

This fine book helps dispel the fear and misinformation about Down syndrome that many parents and prospective parents face.  As these deft essays convey, the world would be a sweeter place with more Down syndrome citizens, not fewer.  — George F. Will

It didn’t sit well with me even back then.  It’s like saying, “Gosh, they’re so special!  Everybody should get themselves one!”

These are all myths, and they only serve to further separate people with Down syndrome from the general population.  People with Down syndrome do not have special powers.  Sure, some – maybe a lot! – of them are stubborn.  But so are a lot of people who don’t have Down syndrome.  Sure, some are especially loving – and some are not – and many, many, many people who don’t have Down syndrome are especially loving – or especially not loving.  And while I don’t think that having as many kids as I do makes me any sort of expert, it does give me a somewhat unique opportunity for comparison, and I will tell you that, yes, Finn is extremely stubborn – but so is Annabelle; Finn is affectionate, but not any more so than any of my other kids; he’s never looked into my soul as far as I know (although that could be because I may not have a soul . . .); and what’s this whole “pure” thing?  It’s possible that Finn may remain a little more innocent and less worldly than his siblings as they grow up (although I can’t say for sure), but, put bluntly, that has to do with the capacity to intellectualize – not a specialness unique to a third copy of the twenty-first chromosome.

I’m certainly not saying that people with Down syndrome are no different than their typical peers.  They are different in many ways – and I’ve never gotten on board with the whole “more alike than different” campaign anyway.  Difference is nothing to compensate for or be afraid of.  I just think that seeing them in this glow, with these almost supernatural traits, only serves to reinforce society’s feeling that they are a different class of human.

I wonder if this propensity to see almost superhuman qualities in our kids is really a reflection of this fierce protectiveness we parents tend to have of our kids with Ds.  Or perhaps it stems from the initial need to cope with the knowledge that our kids are different.  In other words, maybe what’s actually special about our kids is how we love them – not how they are.

They’re people.  Flawed, talented, quirky, confounding, people.  But just people.

A Rambly Post In Which I Try to Address Technology, Choice, Societal Expectations, and Down Syndrome

Big news on the Down syndrome front: there has been a breakthrough in Down syndrome research as scientists recently figured out how to “shut down” the extra copy of the twenty-first chromosome that results in trisomy-21, or Down syndrome.  At least in a test tube – not yet in an actual human being.  But that may be a speck on the horizon.  The findings were published here.  As expected, there are a lot of articles and commentary popping up in response to this scientific headline; one such article, published here in The Boston Globe, also discusses new drugs that are set for clinical trials in the very near future to “treat” Down syndrome – specifically, to improve cognitive capacities of people with Down syndrome.

Louise Borke of North Andover said participating in trials of therapies is something she would seriously consider for her 24-year-old son, Louis Sciuto. He has two jobs and lives independently, and he rides his bike to her house to play basketball in the driveway, but like any parent she would love to give him every opportunity.

“If it would just make the individual a higher-functioning person with Down syndrome, I would be surprised if there’s anyone who wouldn’t want to try it,” Borke said.

As a parent of a child with Down syndrome, I feel like I am expected to weigh in on this – on potential gene therapy and drug therapy for Down syndrome.  Would I do it for my child?

Instead of answering that question, I think it’s important to examine what is at the root of that question: would I change my child if I could?

What bothers me about the whole thing is that it’s just another example of how we value life based on arbitrary standards, like intelligence and achievement and performance.  Those who are smart, who make a lot of money, who contribute to society in material ways – those are the people we as a society hold in high regard.  People who have lower intelligence, less than optimal abilities, who are dependent, are liabilities, and they are expendable.  And since we consider ourselves a civilized society, we try to improve and fix them.  It’s all cloaked in “wanting what’s best” for our kids.  Wouldn’t you like to make your child’s life better?  Wouldn’t you like to make your child’s life easier?  Wouldn’t you like to remove or lessen some of the struggles and hurdles they will face?  Wouldn’t any good, loving parent want those things for their child?

All of this assumes that “treating” Down syndrome – by way of gene therapy, drug therapy, physical therapy, speech therapy, or whatnot – actually does improve – well, to put it bluntly, people with Down syndrome.  Whether it actually does remains an open question that really cannot be answered since it is impossible to take a child and subject him or her to the various therapies available and compare the “results” to the very same child not subjected to those therapies.  There is such a range of manifestation of Down syndrome, and nobody who has their child in various therapies can truly claim that their child’s abilities are improved by therapy because they’ve not observed their child at the same age and stage without therapy; by the same token, those parents whose children undergo little or no interventive therapy can’t say for sure if their child might be different with therapy since they haven’t observed their child at the same age and stage with therapy. This has always fascinated and frustrated me – how many parents insist that therapy has made a huge difference for their child.  How can they really know?  What is true is that we parents of children with disabilities are very much subjected to judgment and societal expectations that we will take measures to improve our children, because it’s irresponsible not to do so – not to take advantage of all the technological advances that have been made.

If what we are talking about it quality of life, then we have to ask ourselves: does smart and able equal happy and successful?  Is an easier life a better life?  Is a life with fewer struggles a better life?  These are philosophical questions to which there are no simple answers.

One of the things I heard most often in the weeks and months after Finn was born was “Didn’t you do the testing?”  People seemed genuinely surprised that in this day and age when it’s common practice to find out everything you possibly can about your fetus before it’s born, that I had chosen not to.  People seemed especially surprised given the fact that I was 40 when I got pregnant with Finn – didn’t I realize my risk factors?  And the fact that I chose home birth – extremely low tech and low intervention by its very nature – many people for some reason seemed to think that where Finn was born had anything to do with the condition he was born with – as if there might have been a different outcome had he been born in a hospital.  When I found myself pregnant again at the age of 44, I incited more surprise, and perhaps even disdain, when I again declined prenatal testing and planned for another home birth.  It was reckless, irresponsible not to take advantage of everything modern technology has to offer.

Only, I didn’t see it that way.  It’s not that I was choosing the bliss of ignorance, necessarily, but how I chose to approach my pregnancy with Scarlett had very much to do with my feelings about Finn – about his birth, his diagnosis and how that was delivered to us, and his very personhood.  Was I truly okay with it?  I did not feel that knowing Scarlett’s chromosomal makeup before she was born would benefit her or me – I was only concerned that she was physically healthy enough to be born safely at home.  My midwife supported my choice not to have any prenatal screenings beyond a 20-week ultrasound, but I think even she worried about the odds of my baby having a genetic anomaly based on my advanced age and the fact that I’d already had a baby with Down syndrome.  After Scarlett slipped out into the world, and I pulled her up and held her in my arms, I remember my midwife taking one of Scarlett’s tiny hands and spreading her fingers out, examining her palm and showing it to me.  “See?” she said, showing me the typical double crease.  “I don’t care, I don’t care,” I said.  “I just care that I have my baby here.”  I didn’t want those first few precious moments spent worrying or feeling relieved about her chromosomal makeup.  I wanted to just know her as my baby – not my healthy baby, or my defective baby – just my baby.  Exactly how my first moments and hours with Finn were spent.

Back to the question of whether I would undertake gene therapy or drug therapy for Finn.  In all honesty, I think it’s still going to be quite a while before either of those therapies are so readily available to the general public that I will even be faced with a decision about that.  In the meantime, I want to spend my time and energy as Finn’s mom advocating not for him to change in order to fit into the world better, but for the world to be more accepting and accommodating of Finn and of diversity.  I want to instill in Finn a strong sense of himself – a belief in himself just as he is.  And if and when the time comes for a decision to be made about gene therapy or drug therapy, I would like to think that Finn himself would be very much a part of that decision process.

World Down Syndrome Day

Today, March 21, marks the eighth annual World Down Syndrome Day, a day now recognized by the United Nations as a day of awareness and celebration of Down syndrome all over the world.

There is a lot of pressure on us parents of children with Down syndrome, on us advocates, to advocate our hearts out today – to raise a flag, to shake our fists, and to say something profound.

Frankly, I’m weary.  Weary that we’re still fighting the same fights for compassion, respect, and inclusion.  Basic human dignity.  Weary that behind the scenes, we have trouble agreeing on what, exactly, we should be advocating for.

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All I want is to raise my kids in a world that’s going to see all of them as valuable human beings.  All I want is to be able to go somewhere – anywhere – without constantly being on edge, waiting for someone to drop an R-bomb.  All I want is to be able to take my kid to the doctor’s office and not have to educate them about Down syndrome facts and myths.  All I want is to be able to count on my kid being welcome to attend the same school his siblings attend.  All I want is for people to see my kid as a kid – yeah, a little different, but not some lowly or otherworldly creature who should be disdained or fawned over.  All I want is for people to see me as just a mom – one who is defined far more by the sheer number of kids she has than by the fact that one of them sports an extra chromosome.

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I wonder if there will ever come a day when our advocacy will no longer be necessary.

Can I Teach Finn to Read?

This question has begun to loom large in my mind.  It all kind of started a few weeks back when I discovered that Finn has picked up letter recognition, object identification, and matching pictures to their first letters all by himself using different apps on the iPad.  I wrote about it here.  That discovery planted this seed about teaching him to read, and how very much that could benefit him.  Mainly, I keep thinking, “If he was reading – even just a little – before he starts kindergarten, imagine how far that could go in our desire to see him enrolled in a typical kindergarten class.”  I expect that to be a battle – based on our previous experience with our school district with regard to Finn’s educational placement, and the fact that I’m almost certain (though not completely) that the little girl with Down syndrome who has attended our neighborhood school since kindergarten – she’s now a fourth-grader – is no longer attending our school, and I know the district was trying to get her moved to a more restricted environment at a different school, so . . . the message has gotten across loud and clear that our particular school district isn’t fully supportive of inclusion.

Anyway, our plan is to have Finn do one more year of preschool and enroll him in kindergarten next year when he’s six; I want that extra year to allow him to gain a little more maturity and, frankly, to get him potty trained (that is a hurdle that we have made no progress on and it weighs on me).

And I keep thinking that reading could open doors for him.

Let me say, before I go any further, that I’ve never been that kind of mom – the flashcard mom, the Baby Einstein mom, the mom who is determined to give her kids a leg up.  I never taught any of my kids anything purposefully academic before they started school; I always figured, that’s what school is for!  (I know that goes against the current trend of parenting to the nth degree, but I’m just being honest – it’s not me.)  And sure enough, all of my kids have done fine – more than fine, actually.

But with Finn, it’s a different story, as are many aspects of having a child with Down syndrome.  For a long time, I’ve seen references here and there to the fact that most kids with Down syndrome are visual learners.  I really wasn’t sure what this meant until I started doing some research recently.  What it means as it relates to learning to read is that kids with Down syndrome (and kids who are visual learners for a variety of other reasons) see words as pictures, rather than as groups of individual letters grouped together to form sounds that make up words.  So, for instance, Finn would see this

COOKIE

as a picture of the word that represents a treat he is particularly fond of, rather than a group of letters that make individual sounds that, together, form a word.

Does that make sense?

Apparently, visual learners have a lot of trouble learning to read the traditional way, which is phonetically (learning the letters, then learning the sounds each letter makes, and then sounding out words), and trying to teach them using rhyming words and similar words/word families (rat, cat, bat, hat, etc.) leads to confusion, frustration, and ultimately failure.  (Disclaimer: I know this isn’t the case with all kids with Down syndrome; this is a generality based on the latest research, so please don’t leave a comment telling me that your kid learned to read phonetically just fine, as I’m sure that’s true.)  Knowing this, I’m also suddenly realizing that to rely on teachers using traditional teaching methods with regard to reading could very well end up in failure, which would only confirm the widely held belief that maybe kids with Down syndrome just can’t learn to read.

So I’ve decided to take the bull by the horns.

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Probably the thing of greatest value I got out of that book I read recently, Down Syndrome Parenting 101, was the section on Down syndrome and literacy.  It started me on the right track of researching programs for visual learners, and there are quite a few out there: Special Reads for Special Needs (this is the program founded by the author of DS Parenting 101), Within Reach Learning Center, The Learning Program through the Down Syndrome Foundation of Orange County, So Happy to Learn, Love and Learning, and eReadingPro are just a few.  I decided to go with eReadingPro based on my friend Heather’s recommendation and the fact that it’s one of the few programs that doesn’t require me to travel to some other locale for workshops and/or to enroll Finn in a special reading program (with seven kids, that is a near impossibility).

The downloadable program cost me $90 and requires a lot of printing out of flashcards and organizing into categories.  It’s a fourteen-month program that works on a daily schedule, beginning with single words and working up to sentences.

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This is going to be quite a commitment!  I’m a little intimidated and hope I can muster the wherewithal to stick with it and see it through.  I have about the first month of the program printed out and organized, so I’m psyching myself up to get started in the next few days.  I’ll post progress reports here from time to time.

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I am hopeful.

Down Syndrome Awareness: Guest Post by Emily

I know that Down Syndrome Awareness Month is long behind us, but it’s never a bad time to raise awareness.  The following was recently sent to me by a fellow mom of a child with Down syndrome.  She first got in touch with me when her son was a little babe, and we’ve since become better acquainted via Facebook.  The online community of parents of kids with Ds is amazing, and I am truly grateful to be a part of it.

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In August of 2011, our son Jacob was born.  We had the “surprise” diagnosis. We live in a rural area with very limited resources. That is why searching the Internet seemed to be my only option.  We had so little knowledge of what Down syndrome was all about.  Therapy for babies? I had never heard of such a thing. We do not have those resources in this immediate area.  No doctor or specialist offered much information at all.  As a matter of fact, a doctor told me to not read the internet at all for any information, because most of it was outdated and inaccurate. When they did try and share information it all seemed so impersonal and generic, since they had not been through it themselves.  I figured that no one would be more help to our family than the up close and personal from another family.  That is when we found Lisa and Finn.

SEARCH:  “Down Syndrome”,  “New mothers with babies with Down syndrome”, “Children with Down syndrome”, “Life with a child with Down syndrome”, etc, etc,…then I was introduced to   “Life As I Know It” by Lisa Morguess.   I immediately felt a connection when I saw that she was close to my age and I saw how many children she already had.  I was wondering what is was like for the older children to have a sibling with Ds.  I had never even read a blog before Jacob was born.

And so began my quest for information on what it was like to be a mother of a baby with Down syndrome. I knew no one at that time who had been down this path.  I longed for that connection, for someone to tell me what this  was going to be like.

I thought Finn was the most beautiful boy!  I looked over all of Lisa’s pictures carefully and just cried like never before.  Tears of joy that is! This is how Down syndrome really is! No institutions, no grim outlook at all, this really did not seem any different than raising any other typical child.  I combed the blog pages looking for insight, and I got that.  A very honest depiction of their life raising Finn.  Also seeing another outlook on therapy was quite reassuring after feeling so much urgency and pressure from other parents in the Ds community.  Another thing most people do not know is the raw grief and emotion involved when things are not quite as expected with your new born baby.  I also learned this is part of the process and that it is okay.  I saw how much Finn’s brothers and sisters adored him and looked after him.  I loved to see how his sisters took care of him and let him play dress up with them.  I soon developed an excitement about the future in days to come.  I knew my daughter was also simply loving her brother for being Jacob. That is the beauty of children, they love completely and don’t even care about Down syndrome.  A lesson all adults could really learn from.

I quickly learned how politically incorrect medical professionals are as a whole.  Through the pages of the blog I was introduced to a more progressive way of thinking, as well as a more articulate way of speaking in a language that showed respect for all individuals living with a condition called “Down syndrome”.  I have started encountering a lot of individuals who still have so many of the same old tired images of people with Down syndrome. The ” I am sorry’s”, the long face they reveal after showing them a picture of my son. I just had an elderly man tell me that he used to know “some of those”. It broke my heart, but it was then that I realized how important it is that we continue to educate the public and get rid of these old outdated images and feelings some people still have.

I no longer felt like the only woman in the world with this new path before me.  I emailed Lisa with countless questions and she would always get right back to me.  I soon had my friends and family read her blog so they could better understand.  I became inspired, motivated and confident that we would be “okay”. I can always count on well researched topics from Lisa and value her opinions, whether I agree or not.

I have made many more connections since our journey began.  However, I will never forget the day that young Finn popped up on my laptop screen and showed us all how beautiful life is.

Thank you Lisa and family for taking the time to advocate, research and educate our public on the truth and facts regarding Down syndrome.  You have a strong voice and I hope you continue to be a presence in our community.

~ Emily

Down Syndrome Out and About

I know Down Syndrome Awareness Month is over, but I have to jot down a brief encounter I had yesterday.

Joey had a Little League game, and it was at a sports park where there are multiple ball fields and a playground, and the whole thing is adjacent to an elementary school.  So I’m sitting in the stands with Scarlett watching the game, Michael is helping coach out on the field, and Daisy, Annabelle and Lilah are running around.  I craned my head around to make sure I could still see them, and I spot a little boy and my radar suddenly starts doing its thing: the little boy had Down syndrome – I could tell from 50 feet away.  Funny how once you have a kid with Down syndrome, you have a nose for other kids with Down syndrome.

Now I’m visually stalking him.  He’s with a young girl – his sister, I assume.  They must belong to a family watching one of the other ball games going on.  They scamper off to the playground, which is just a few yards away from the stands I’m sitting in.  Well, my girls are playing on the playground, so why shouldn’t I sidle on over there, right?  Right.  So I climb down from the bleachers with baby in hand and casually (ha!) go stand at the edge of the playground.  Yep, he’s definitely got Down syndrome.  He and his sister are playing tag.  I catch her eye and say, “Is that your brother?”  “Yes,” she says.  “Does he have Down syndrome?” I ask (heart pounding a little hard, as I realize this could come across as very rude and forward).  She stammers a little.  “Yes,” she says, and I catch a note of defensiveness in her voice.  And why not?  Who is this woman asking questions about her brother?  “I have a little boy who has Down syndrome, too,” I tell her.  “Yeah!  His name’s Finn and he’s four!” one of my girls laughs, as if to say “Down syndrome, schmown schmyndrome!  No big deal!”  I was sorry that I had left Finn at home with Kevin.  I asked her how old he was (he was busy running around) and she told me he was 8.  So the same age as my twins (he looked quite a bit younger, not surprisingly).  A minute later, he took off running.  His sister chased after him, but he kept on going, and soon he disappeared onto the school grounds.  Then there was their mom giving chase.  I kept watching to make sure they caught up with him, and sure enough, several minutes later, here they came, Mom holding him by the hand.  I smiled at her as she passed, hoping that my smile conveyed . . . something, I don’t know what.  Just not that I was some jerk rubbernecking.

And I also kept thinking, “Eight years old, and he still bolts.  Do they ever outgrow that?”  It’s the very reason Finn was at home with Kevin – because he takes off, and I’m afraid I won’t be able to keep track of him at a ballgame when I have the baby to manage as well.

I wish I knew how to approach other parents of kids with Down syndrome.  After all this time, I still don’t know how.  But the urge to connect when these encounters arise is still strong for me.

Sometimes I wonder  if Finn and I have ever been out and about and unknowingly been the object of some other mom’s desire to connect.

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