Care and Feeding of the 'Special Needs Parent' (31 for 21, Day 14)

It's only human nature to be weirded out sometimes.  We have a limited capacity for accepting new things it seems;  I see it on the faces of all the new people at work all the time.  I work in mental health, an area where I have seen some things in my day.  Lots of scary things, lots of very sad things.  It doesn't matter who it is either, could be a nurse from another department, could be a visitor, a doctor, it could be a new security guard... they all get that slightly fearful "I don't know what I am looking at or quite what to do right now" look.  Often there is a stunned silence that goes with it.  I watch this and I intervene when and where I can.  In the absence of experience, a little health teaching can go pretty far sometimes.

I ran into a lot of that with Wyatt's diagnosis too.  Down syndrome is not a scary or weird or sad thing as it turns out, but at the time... well, I thought it was.  I had a lack of knowledge, so I began teaching myself and then others about Down syndrome.  In the interim, the health teaching and increased knowledge gave me comfort where I did not have experience.  Now that I have some experience (at least almost 20 months worth) of this 'special needs' Mom gig, I feel much better, but I am continuing to learn.  I still see that look sometimes though, on friends, family, colleagues... strangers in the supermarket.  Sadly, the knowledge deficit that I had is peanuts compared to the rest of the world.  The last generation or so of people with DS have come so far and right now we are on the threshold of something fantastic.  The life expectancy has gone (in my lifetime) from 25 to 60+ and with each new discovery, is climbing higher and higher.  We have not yet completely tapped the cognitive potential of the Down syndrome brain either.  In the next few years we will see some serious advancements.  Sadly, most people will never hear or know about it, or even believe it once it happens.  It's too weird.  The stigma runs too deep.

As a parent of a little boy with Down syndrome (and of twins), I am aware of all these exciting things.  I am also aware of a lot of things that we 'in the community' have to put up with all the time that you may not know exist.  I'm not asking to be treated like a Fabergé egg, don't get me wrong.  However, if I am edgy or tired or tear up easily, there probably is a good reason for it.  I'm not clinically depressed, thanks.  I'm not sorry my son has an extra chromosome either.  I would however, like to point out a few things that you may be unaware of.

The R Word

Please don't ever use it in my presence.  I am speaking of the R word or "retarded".  It is the most offensive thing that you could say, ever.  I would rather you punched me in the face or dump a bucket of raw sewage over my head as both of those are easier to deal with.  That goes for any word with the suffix "-tard" at the end, no matter how 'cute' or edgy it may seem.  I have said, in detail, many times what that word represents.  Others have said similar.  It never seems to be enough.  When you describe your dog using this word as he's tracked in mud or use this word to describe your boss, the cop giving you a ticket... whatever small insignificant annoyance has troubled you... you completely and utterly demean everything that my son does and will ever do.  You demean my family.  You demean me.  It is a name of oppression, it is a word of hate.  Do. Not. Use. It.  Ever.

FYI:  Citing free speech or artistic freedom or some other thing to cover your bad behaviour only makes you look like more of an asshole. 


"I am tired"

Nowadays, it from shift work and two teething toddlers.  However, we 'special needs' parents lose a lot more sleep on average.  Lack of sleep will do a number on a person;  I swear that 80 percent of my patients just need a decent night's sleep.  Being tired not only interferes with mood and brain functioning, but it can also contribute to things like weight gain and lowered immunity.  If I have a nap on my break, don't assume I've been up all night partying.  I've probably been attending to one of my kids or the laundry monster in the basement.  Besides, I can't remember the last time that I was up all night partying.  If I do have a glass of wine, it will occur in the hour between the last kid going to bed and when I fall asleep in the chair/couch/drooling on the laptop.


"I am worried"

I worry about a lot of stuff, even if I don't show it all the time.  I worry about my son's heart and his upcoming surgery.  I worry that my eldest will be bullied as his younger brother has a learning disability.  I worry that I won't live to the point where my kids don't need me any more.  I worry that my daughter is going to end up with some narcissistic antisocial jerk that treats her like crap and she loses her amazon spark.  I worry that the lady behind me in the supermarket who is peering at my twins and wondering why the boy looks a bit different is going to say something stupid and I will get into a fight right there as I am trying to scan my fabric softener.

All parents worry, that is true.  We worry more.


"I don't want to talk about it" and "I want to talk about it"

I blog as a type of therapy, this is not a secret.  Most of the time I "get it all out" in this format, my page or my group.  As a result, I probably won't feel like talking much when you approach me looking for an update.  Honestly, I'm not trying to be difficult when I say "read the blog", it's just that I've said it all already.  I'm a better writer than I am a public speaker so you will probably get the best answers here anyway. 

Some days are different and in the course of a conversation you and I will stumble on some new research or nugget that I have discovered.  Just let me geek out a bit, ok?  I promise I will listen to your tales of knitting or how many squats you did or whatever it is in particular that you are interested in.  Down syndrome is more than just something my son has;  as I continue to learn more about it every day, it's become a hobby for me in a way.


"I want to hear about your kids" and "I don't want to hear about your kids"

I love my nieces and nephews.   I love all the little people that are in my life.  I love sharing in their triumphs and developments.  Please, share them with me, guilt free.  If, at some point, I suddenly excuse myself to use the washroom and come back with red eyes, just let it go ok?  I'm probably having a bad day.

What I won't do is get into a "pissing contest" with other parents, especially those whose kids have special needs.  It is not a contest.  No one wins if they prove they have the sickest kids and the most on their plate.  Stress is subjective, as is anxiety and grief.  I will help, support, validate, care and love you when and where I can.  I will not feed your ego.  With that;


Bullying is everywhere

I don't want to hear about people having to 'just toughen up', ever.  I have 'toughened up' more than most people will ever comprehend (sadly, that is not idle boasting).  Bullying is a real monster and I see it everywhere.  It is in the schoolyard, on the school bus.  It is at my work, in the form of lateral violence between my colleagues and between departments.  It is in every online chat room, in the comments of every page, in every forum and especially on Facebook.  Trolls are everywhere and sadly some people have so little in their lives to fill them up that they get off by being hateful in a semi-anonymous forum.  I am a target as I am "out there" being an advocate for a highly marginalized group of people that get made fun of an awful lot.  I also speak my mind and consistently call people on their bad behaviour; I don't care who they are.

What may be a surprise to some is that bullying exists in the special needs community too.  I've seen fans from one special needs page troll another special needs page for a difference of opinion.  There's a lot of passive-aggressiveness out there in "the community".  It's particularly sad as it diverts energy that could be making things better for everyone.  Things are very compartmentalized in the special needs world, based along diagnostic, political or religious lines.  It's kinda ironic that a bunch of folks that ask for inclusion can't practice it amongst themselves.  All are welcome at my table;  many of my readers don't know anyone with Down syndrome but recognize that the paths that we walk are similar.

Bullying is a trigger for me.  It is never a joke and never tolerated.


Coping is as Coping Does

Coping, like stress, anxiety and grief, is subjective.  What works for me may not work for you, just as what stresses you out might just 'roll off my back' like water off the proverbial duck.  As long as what we are employing as coping mechanisms isn't destructive and does not interfere with the rest of our lives, it's okay.  That may mean building a fort in the closet one afternoon.  It may mean a glass of wine or two (or three).  It may mean extra long runs in the rain.  It may mean recreating the Sistine chapel on your bathroom ceiling, it may mean simply approaching a problem from a different angle.  It may mean all of those things or none of them.  Whatever works, man.

I use an analogy that I share with my patients a lot.  I have, in my mind, a coping "toolbox" that I use to battle stress and anxiety.  It has a variety of specialized tools that I employ at specific times based on my stress levels.  If my stress is low, I may hang out on Facebook or read or blog.  If my stress is higher and I find myself unable to concentrate on those things, maybe I'll walk or pull weeds in the garden or sort out the toys.  I wouldn't use a wrench instead of a pencil, so I don't try to read when I am particularly anxious.  I have different techniques (or "tools") for different situations which allows me to be prepared most of the time.  My tools are as varied as I am and can range from wandering around the yard with a camera to helping out one of my Facebook friends with a problem.  None of it is wasted time.

On a related note, I finally found the answer to "I don't know how you have the time to do it all."  You know all the time you spend at the nail salon, doing your hair, painting your toenails, watching tv, playing sports, visiting friends, going to classes or building things?  Yeah... I don't do any of that.


Parents of 'special needs' children are special in their own right sometimes.  We still have the same hierarchy of needs that everyone else does (thank you Abraham Maslow), but in order to achieve happiness, we have a few more quirks than most.  We are, however, not fragile snowflakes or weird specimens.  We are people whose kids have a few more hurdles than the rest... and they aren't weird either.

I have a little joke that I share with new people in psychiatry, especially the students.  I tell them to "always know what side of the glass you are on".  It's not an 'us vs. them' thing, rather it is a matter of perspective as to who is on the 'inside' and who is on the 'outside'.  Both sides sees the other as bizarre, ill and often, ignorant.  The trick is to create a space where the glass is no longer necessary;  hopefully with a little education and understanding we can all be happy, fulfilled people.

In the meantime, don't get huffy when I am a bit off, or I forget to call or you encounter one of the things I've mentioned here.  On some days it is harder to choke down the extra helpings on my plate.  Instead, pull up a chair.  Offer up an understanding ear, or if you dare, dig in a spoon.  You'd be surprised what flavours will greet your senses.

Fairytales

"Once upon a time, in a northern land, lived a Mommy and a Daddy.  They had a little boy who was the apple of their eyes.  As the little boy grew, they saw how lonely he was and wanted to give him a brother or a sister to play with. 

So, they tried.  They tried and they tried and they tried. But, no matter how hard they tried, they could not have a baby. This made the Mommy very sad as she wished she could have a baby with all her heart.  She wished it so hard that she could not stop thinking about it, day or night.  Even when she was eating dinner or playing with her boy, she was still wishing for a baby.  One night in the garden, she saw a falling star.  The Mommy squeezed her eyes shut really tight and wished for a baby as hard as she could.  As she made her wish, two more stars fell side by side, but she did not see this as her eyes were closed.  Her wish made, she went back in the house and went to bed.  That night, she slept the deepest sleep and dreamed of two dragonflies.

The next morning, the Mommy woke the Daddy up as she was crying for joy.  The wish had come true!  The Mommy was going to have a baby!  The Mommy and the Daddy laughed and clapped their hands with joy.  A little while later, they laughed and clapped again for they were told that they were going to have two babies!  One baby was a boy and the other was a girl.  The little boy was so happy, he could not stop talking about the babies to any one that he met.  He was going to get a brother AND a sister!

As there were two babies, the Mommy had to see many doctors. She was very puzzled to see that they all had long faces when talking about the babies.  They would hum and haw and and scratch their beards in thought as there was something different about the babies, but they couldn't quite put their finger on it.  One day, a month before the babies were born, the Mommy went to one last doctor.  They did many things and afterwards the doctor told the Mommy that her unborn baby boy was sick.  He had a heart with a hole in it and would be poorly all his life.  The Mommy was sad.  Very, very sad.  The Mommy cried big tears into the Daddy's shoulder while the Daddy would try to comfort her and not let her see how sad he was too.

Luckily, the Mommy was a healer.  She started reading everything she could find about poorly little babies with holes in their hearts.  She would read new books and old books and tomes that dated back to when the world was made.  Night and day she would read and read and read, until her eyes were sore and she got a headache.  Still, she kept reading.  She would tell the Daddy everything that she learned and he would sit by the fire and nod sagely.

Before dinner one day, the Mommy felt a sharp pain in her belly.  The babies were coming!  The Mommy and the Daddy raced to the hospital.  There was a lot of activity and whoosh!  The babies were here!  The attendants for the girl baby were bright and happy and laughed and danced at her perfect features.  The attendants for the boy baby were quiet and murmured in hushed tones as they shuffled with leaden feet.  Finally, one of the attendants came over to the Mommy and announced that her baby boy was sick.  He was in fact, poorly and did have a hole in his heart.  The Mommy however, was wise from all her reading.  "May I see my son?", she asked the attendant. 

When they brought her little baby boy over, the Mommy recognized him for what he was.  Yes, the little baby did have a hole in his heart.  However, being wise, she realized what many people did not.  That hole in his heart was just a keyhole, one that unlocked his little extra, which was in fact, a gift.  Instead of being poorly, her son was different.  You see, her little baby was given magic.

As time went on and both babies grew, it became more and more apparent how magic the little baby was.  He would laugh and the hearts of those that were with him were filled with joy.  The Mommy and the Daddy and the little boy were so happy with their new babies that they often laughed and clapped their hands in delight.  Despite what the doctors and the townspeople said, they knew the truth about their littlest boy.  In time, everyone realized how wonderful he was and they wanted to be near him always because he made them feel so good.  Surrounded by friends, the Mommy and the Daddy and the little boy and the twin boy and girl lived happily ever after.  The End."

Those of you that follow this blog and are familiar with our life will recognize parts of this story.  It is, in essence, the story of our children.  Some parts of this story are very real.  I do have baby twins, a boy and a girl.  I also have an older son who is the apple of our eye.  My son, baby B was born with Down syndrome and AVSD, a "hole" in the middle of his heart.  These are the facts of our situation;  obviously the rest of the above might as well be a children's bedtime story. 

Recently, a British 'journalist' has come out to say that if she found that her IVF pregnancy was positive for Down syndrome, she would terminate her pregnancy.  Good for her.  Both she and I live in places where we have that right to choose what we want to do in such situations.  That is not the issue here.  The problem lies with the comments that she made afterwards, including describing those with DS as a burden on society and medical resources.  To further upset the proverbial apple cart, she went on to say that she wished parents of children with Down syndrome (parents like me, for example) would stop "Disneyfying" the situation.  Essentially, adding a spoonful of sugar [coating] to make the medicine go down.

I'm sorry to break it to this person [who shall remain unnamed here, as she should not receive any more attention than she already has], or anyone else that feels this way, but there are no dancing candlesticks at my house.  There are no pirouetting sprites and no large mice trying to get me to use Mousketools on this blog, either.  Walt does not live here.

What does live here are poopy diapers, sore gums, lost sleep, a messy house and dirty laundry, just like every other family with three or more kids.  The only difference in my house is that one of the children is a little slower to develop than the others.  That isn't Disney either, that is fact.  Most of what this person states about children like my son however, belongs in the realm of myth.  There are many popular misconceptions about DS; unfortunately, instead of taking the time to educate and report the facts, she chooses to spin a few of the more popular pieces of fiction like so much yarn. 

For starters, I am sure you have heard the old adage that people with Down syndrome are "always happy".  They aren't.  People with Down syndrome have the same emotions as you and I.  They get hurt when people make fun of them.  They feel pain.  They get sad and feel loss, just like everyone else on the planet with any shred of empathy.   Another old saw is that all are "severely retarded" (to use an old, outdated and offensive turn of phrase).  The developmental delay in Down syndrome ranges from person to person, this is true, but most with DS fall into the mild to moderate range (which can also be affected by early intervention, good diet practices, etc).  In fact, most are totally integrated into regular schools and only have some classes with assistance or separately.  All are capable of learning, will walk and communicate (if not talk) and will live rewarding lives.  People with DS go to college.  People with DS get married.  If you have any doubt in your mind that people with Down syndrome will "amount to anything" as the saying goes, you only have to look to Tim, who runs his own restaurant in New Mexico.  How about the multi talented Sujit Desai, who plays more instruments than I can count?  How about actors like Lauren Potter that are household names?  My son will probably never be a doctor.  Guess what?  Neither will I and neither will most of the people reading this.

A scarier story is the angst ridden "What happens when I'm gone?".  Every responsible parent of every child asks this question at some point.  Being an older parent of young children, it does occur to me from time to time.  However, the approach to this is two fold:  understanding that there is a certain amount of things that you can plan for and accepting that sudden life events happen.  We can all, almost without exception, get hit by a bus tomorrow.  That is life.  As a parent, you have to bet that there are things that you really can't plan for.  You can also quite easily prepare for your expected death by setting up a special kind of trust fund, an absolute discretionary fund that will ensure that your child with special needs will be taken care of for the rest of their life.  It's really that simple.

As for the impact on the family, introducing a child with Down syndrome is pretty much like introducing any other child, right down to the "meet your new brother or sister".  Once again, I will point to the independent studies that show the positive impact a child with Down syndrome will have on a family.  I was told once, by a not so fairytale troll, that I will be miserable and my husband will leave me because of my son as 'no man' will be able to 'handle it'.  I am lucky to have a fabulous husband who, not only loves ALL his kids dearly, but he's made raising them his job.  Sean is a Stay-at-Home Dad.  He isn't perfect at his job and I don't know anyone who is.  However, he not-so-magically 'grew a pair' and stepped up for his family when we needed him most.  Not to take anything away from his efforts, but he is doing what he is supposed to do by being here for his family.  Sadly, yes, many fathers of children with special needs fly the coop.  I have met more than a few women in this position, who raise their children themselves as their former boyfriends/husbands go on to have other children that they do fawn over. It is a heartbreaking situation.  However let me make myself clear by saying that any parent who abandons their family, is a COWARD in my books, plain and simple.  Blaming it on an innocent child is even worse.

Life does tend to throw in some interesting plot devices now and again.  If there is one thing that my *cough* years as a nurse has taught me, is that nothing is a given.  It is fragile thing that is easily lost for seemingly no reason at all.  Drunk drivers happen, cancer happens.  The most perfect children with the most desirable traits are gone in an instant.  *Poof*.  Even sadder in a way are my mentally ill patients.  We have high school football stars with solid grades who one day, God starts 'talking' to.  Schizophrenia happens too,  so does drug and alcohol abuse, depression and suicide.  No child, regardless of their chromosome count at birth, is a sure thing. Parents aren't a sure thing either;  I see hundreds of teenagers a year who, having been given 'everything', run wild to get what they really want:  their parents attention.  Not attention from the babysitter, not their peers (who are the only people that they ever really form attachments with), but their parents.  There are also the 'throwaway' children too;  teenage children of families who don't fit into their parents schedules or new relationships.  When they become too much to handle, they are fobbed off on whoever:  relatives, the hospital, boarding school, the streets.  There are abused children, both physically and sexually that are so emotionally wounded that they may never heal.  Sadly, I wish I could rewrite most of these stories, but that is not in my power.

Lastly is the fabled medical expenses/burden on the medical system.  I'm Canadian.  This is not a problem for me.  If you live somewhere in the world without health care, I cannot comment on your situation.  Yes, I do take Wyatt to more doctor's appointments than the other two kids combined;  he will have to have open heart surgery at some time in the future. That is totally covered and I have no worries about the financial side of any of that.  Oddly enough, Ms. I'm-A-British-Journalist also has the benefit of universal health care, but I digress... In terms of anything he may have 'wrong' with him, his conditions are a) completely treatable and b) occur in the general population as well.   In fact, every 'disorder' that people with DS have occur in 'typical' people too.  They are also almost always treatable these days. What I can, quite comfortably comment on, is the 'burden to the system'.  As I have said, Wyatt will need some time in hospital, open heart surgery and checkups and preventative care.  Even if he develops diabetes and a few other things, his costs will be a drop in the bucket compared to those other children I mentioned earlier.  Who costs more in a lifetime?  My son, with Down syndrome, who will have a job and pay taxes?  Or the 30-something poly-substance abuser who turns tricks to get the next fix, is suicidal, aggressive, full of pneumonia, refuses treatment and is in the ER at least twice a month? I'll give you a spoiler:  it isn't the kid with DS.  Sadly, I, like many of my colleagues are slowly burning out as I see several of the other kind every single shift.

They say if you have met a child with Autism, you have met one child with Autism.  The same holds true with Down syndrome.  As that extra gene expresses itself in so many different ways, it is hard to say how this one or that one will turn out.  It's a gamble, just as much as whether or not my children would look like me or my husband.  That part is fact.  Life is also unpredictable.  Also fact.

However, what you choose to do if you find yourself in this position is your business.  If you want facts and a glimpse of what the future looks like, I and many other parent bloggers and activists out there, can help.  Aside from living with a child with DS, we also put a great deal of time and energy into making sure we have the latest information that will be the most useful.  We've all stumbled in the dark with this one... we want to make sure that no one else has to.  Trivializing and making a mockery of our efforts does nothing for anybody, including making yourself look like (more of) a jackass.  We do not "Disneyfy" Down syndrome, we do not live in a world of fantasy and delusion.  Down syndrome is a reality to us.  The prejudice and misunderstanding that we encounter on a daily basis is a fact.  This is not a world of dreams and wonder, this is a search for equal rights and opportunities.  This is a civil rights movement, in a world that is so permissively ableist that "Down syndrome" and "Retard" are still used in everyday dialogue to elicit a laugh.

When you become a parent, you will do anything for your child, even try to change the world.  I, and others like me, are trying to do just that.  I will not apologise for that.  I will also continue in my efforts to show that Down syndrome is not a terrible thing and that people with special needs just want the same things as other citizens.  Everything else is equivalent to a fairy tale, full of imaginary monsters and designed to scare parents.  There is a lot of love in this house,  there is a lot of joy and laughter and happiness.  If you want to spend some time with us, you too will see a wonderful little family that is everything that I can wish for. Down syndrome may not have been what we envisioned for our son initially, but he has it.  His extra chromosome may not have opened a whole new world of magic and wonder to us, but it has made us more open to new ideas, more humble, more aware of our actions.  It has made us better people,  it has made us better parents.  That is a fact, not fable.  What you do with your life is your business.  You may not want our life and that is fine.  However, you don't get to perpetuate myth and then accuse us of living in a dreamworld.  My life is not like my story at the beginning of this post.  This is not Disneyland.  This is Down syndrome land.  Ruefully, people like that British 'journalist' are still too small minded to go on any of our rides.

I Wish I'd Known

Sadly, receiving the news that your child has Down syndrome often fills parents with dread.  Almost every parent of a child with DS that I have talked to since we received Wyatt's diagnosis has mentioned that time, that dark time when you don't know what to expect and you don't know what to do.  I wish it didn't have to be that way.

At the time, I was literally at war with myself.  I knew it wasn't a death sentence... I knew that it wasn't the worst case scenario.  I had more information than most, being an RN.  All that meant nothing.  All my knowledge and experience went right out the window.  Despite knowing the contrary, I felt that I had failed, that this was somehow my fault.  This was one more thing that I had f☠cked up.  Somehow I deserved this.  I was embarrassed; I felt ashamed.  I wished that I could reach into him and pull it out whatever it was that made him that way so that he wouldn't be that way any more.  My mental image of two perfect twins smiling in the stroller with the cute outfits that my family had given me was gone.  Shattered when the neonatologist shuffled over to us in the OR and carefully cleared his throat.

I've talked about that time briefly before... touched on it, roughed up the surface a bit.  I described how I would suck up the pain, the exhaustion and head to the hospital and do what I had to do.  The crying would come whether I wanted it to or not.  In the shower.  In the cafeteria.  Holding my son while he slept as the NG tube delivered my milk to his tiny tummy.  What I haven't described is how I watched his "upside down" AVSD altered rhythm on the ECG for hours, side by side with my daughter's normal one.  I imagined in three months time, turning him over to the surgeons and getting him back intubated, with a big wound on his chest.  When I was dressing him, I imagined him with a scar and it terrified me. I would trace my finger down his tiny sternum as I reattached his leads after his bath and I wouldn't know I was crying until the tears splashed his chest.  Sadly, what was really fear from lack of proper information, the post-partum blues, accepting his heart diagnosis and dealing with NICU anxiety, was projected onto Wyatt's extra chromosome.  It's unfair, but it happens all the time.

It's not like I didn't have support either.  Most of our family and friends have been wonderful.  My colleagues and the staff were wonderful, even if they didn't always know what to say.  However, as I've said before, I did not know or know of anyone with Down syndrome.  There was a lot of empathy, but little knowledge and no shared experience.  Despite all the well meaning people, I was in a dark, isolated, hopeless place, projecting all over my newborn son.

Once I had started gaining insight, once I had started learning a bit more and had made contact with others in my place (and began self-educating) that darkness began to ebb.  I joke at work that we shine lights into dark places. It was like that for me as little by little, candle by candle, my world began to brighten as I absorbed more and more about DS.  I got to know my little boy in that time too.  I got to know his little baby moods, his vocalizations, his smell.  His routines and his likes and dislikes.  The little things I could do to make things better for him, from extra burping to ensuring there was always something on his little blue feet.

I have since healed, I have moved on.  Time and knowledge have healed my wounds and refocused my energies in a more positive direction.  It hasn't always been easy, but we are here.  One of the reasons that I started this was that I never wanted anyone to feel like I had again.  Never.  If I could reach out to one more mother residing in that dark place, I would.  If I could help fast track someone from those early horrible days to where I am now, I most certainly would. 

A few days after the babies were born I was wandering around in one of the rooms the NICU has for parents.  On one of the shelves was a book of poetry written by parents of very sick and often terminally ill babies.  It was meant to provide comfort.  I found it ghoulish and after reading a few words, I shut it up and threw it back on the shelf with disgust.  A few weeks later I stumbled across this publication and hoped that one day (hopefully soon) I could feel like this too.  It is called "What Parents Wish They'd Known". As time went on, these words became more and more fathomable.  One day, not so long ago, I read it again and realized that I had arrived at a new place, where these words are reality and not some distant dream.

Now, when I read it, I wish I could go back in time and seek out that Mom in the NICU watching the monitors as the tears fell.  I wish I could go back and let myself know that it was going to be okay.  Although it felt then that my own heart had stopped, I wish I could be able to tell my then self that it would start again.  I would eventually exhale and everything was going to be fine.

I want to be able to reach out to new parents and let them know it will be okay.  If the information I have given in the course of this blog has not been a strong enough safety line, if my voice has not been loud enough to echo-locate, then allow me to share more voices.  Hopefully together we will be loud enough.

I wish I'd known the stands would erupt with cheers when she got a hit in baseball, and that her classmates would circle around her with love and protection if anyone was mean to her. I wish I'd known that "being slow" would mean savoring every step, every puddle, every blossom. --Michelle, mom to Ciarra (9 years)	I wish I’d known that it was ok to grieve and scream, cry, vent and be angry. I wish that a facility or network had been in place to reach out to me, instead of the other way around. I wish that every parent coming home today could see my girl and how she smiles and loves. --Amy, mom to Larkin (2 ½ years)
I wish I’d known that this would be such a marvelous journey, and that everything would turn out . . . JUST FINE. --Jackie, mom to Emily (28 years)	I wish that I had known that my broken heart would one day heal, and the love that I felt for my son was the cure. --Kristy, Mommy to Zachary John (3 years)
I wish I’d known I would look Avery and NOT see Down syndrome. I see her as this amazing, smart little cookie—strong-willed, self reliant, and cute as a button.  She walks around like a little queen in a parade, waving, hugging, and talking to everyone. --Kathleen, mother to Avery (3 years)	I wish I’d known I was strong. My husband and I always thought we were the people who couldn't handle raising a child with Down syndrome. Actually,there’s really nothing to “handle.” --Stephanie, mom to Megan (4 years)
I wish I’d known the pure joy, happiness, pride, love, and dedication that my baby would show us all. I wish someone would have told me that this baby was going to change my outlook on life, make me a better mother to his siblings, a better wife to his daddy and a better person to this world. --Carmen, mom to Jaemen (3 years)	I wish I'd known that my son would develop a personality like any other child.  I spent so much time wishing his babyhood away wanting to know what he was going to be like. I wish I had relaxed and enjoyed the sweet baby I had. --Ann, mom to John (5 years) 1

Finally...

I wish I'd known that we would be okay, that we would overcome all the obstacles together as a family.  I wish I had known that there were thousands of mothers like me out there and that we all have felt this way at one time or another. I wish that I would have known that I would see him as "having" Down syndrome, not "being" Down syndrome and then not really caring about it at all.  I wish I had known then what an adorable, funny little guy he would be.  I wish I had known that his smile would wipe away any 12 hour work day and that his laughter would be like music.  I wish I had known that despite all the testing that his heart would stabilize, he would not sicken like they predicted and that his surgery could be postponed until he was a toddler.  I wish that I had known that he would be the sweetest baby on earth.  I wish I had known all of this then, so I could have enjoyed that time together.  I wish... I wish that I had known that he and his twin sister were exactly what we needed. 
--Jen, Mom to Wyatt (8 mos).

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 ¹ Excerpts from "What Parents Wish They'd Known",  Copyright © 2008 The Segullah Group, Inc)

Welcome to the Family

Sunday is traditionally a family day around here.  It's a day of sleeping in and huge gaelic breakfasts.  It's a day for going to the park or cooking a giant piece of meat.  It wasn't a big stretch for me then to chose this day to write about families for the 31 for 21 Challenge. 

It can be hard news finding out that your child has DS, I'm not going to lie to you.  When we found out that Wyatt had AVSD and that he may have Down syndrome, my husband and I were devastated.  Initially.  Obviously as time has gone on, as we have educated ourselves and discovered what a joy our son is, that anger and disappointment have dissipated.  However, in the first inital stages, thanks to our overall ignorance of Down syndrome, (and let's face it, an overwhelming lack of support and facts on all sides) it was there, in all it's oogey-boogey glory.

Last month I ended with "The Big Tell"; how to tell people that your child has DS.  There is the other side, the people receiving the information.  I've run into some (mainly) well meaning friends and family that were at a loss as to what to say.  I feel for them, I do.  What do you say to that?  How do you express (what you think should be) support without hurting the new parents' (potentially) already raw feelings?  What can you say without looking and feeling like a doofus?

As time has gone on, I've compiled a (sometimes) humorous  list of  "Sh☠t Complete Strangers Say" in regards to my twins.  Today I have a different list:  "Things Not to Say to Parents of a Newly Diagnosed Kid with DS".  Many of these things have been said to my face. 

"God/The Universe/Mother Nature/Whatever/Whoever gives special people, special/disabled children."  (I'm not feeling so special right about now, thanks.)

"Down syndrome people are so loving/caring/happy" (Not always... sometimes they get sad like everyone else)

"I'm so sorry." (For what?  You didn't give him DS.)

"You're handling this better than I thought/I could." (How do you know how I am handling this?)

"Well, the older you get, the higher the chances." (How is this helpful?)

"Couldn't they tell?" or "Couldn't you do something about it?" (How is this relevant now?)

"I can't tell/He doesn't look it/He has a mild case/The doctor is wrong" (I had him karyotyped)

"Do you know how serious/how he will do in school" (He's just been born.  Did you know how your kids were going to do in school when they were just born?)

"He/she will do great things" (I don't know that right now...)

...and so on.  They may have the best intentions but it is like salt on an open wound. 

I'm a big believer in offering solutions as well as complaints, so here are a few ways to rephrase or "re-frame" what initially can be an awkward situation. 

"Congratulations!"
"Welcome little one!"
"He/she/they sure look like you/him/Great Uncle Wallace"
"When can I baby sit?"
"What do you need?"
"He/she will be fine"
"We will all learn from each other"
"We will always be here for you"

...and anything else positive that you would say to new parents.  As that is what they are, new parents.

One of the nicest things you can do for new parents is to educate yourself and show interest. Let the
parents be your guide however as they are in the initial stages of new parenthood and may not have the mental capacity to absorb a lot of new information. After all, they are hungry and sleep deprived. (Make them a sandwich for heaven's sake).


Oh, I almost forgot the most important thing to tell your friend or family that has just found out that their new child has Down syndrome:

"I love you."

That helps.  A lot.

Life Without DS

I often wonder what it would be like if Wyatt was like his twin and "typical".  Now, this is not something I dwell on a lot, but it is just one of those things that comes to me from time to time.  While I'm changing a diaper...  At 2:47 am as I'm rubbing a baby's back trying to get them to go back to sleep.  It's just something that occurs to me occasionally.

On the plus side, the last year might have been easier.  Maybe.  On the other hand, I would not:

• know what it was like for his little bean bag body to snuggle into my neck
• know what his little sighing voice would sound like as he coos his hello
• understand what an "explosion of joy" really looked like
• be so happy to be greeted by feet
• know to celebrate every milestone for what it is:  victory
• have learned so much about congenital heart defects
• know so much about DS
• have helped so many others
• have connected with so many wonderful parents, some of which have children with DS, some who do not
• have plumbed the depths and breadth of my own heart

I know I say this a lot, but there are many things that we would not see if he did not have Down syndrome.  There are a million little nuances that are just Wyatt too.  Both together make up my wonderful little man.

And I love his sense of humour...

Added to the 'Define Normal' Blog Hop! Find out more @ Just Bring the Chocolate

The Big Tell

On Wednesday I was able to attend our DS group put on by ICDSP.  Unfortunately, we had to leave early, just as the discussion was starting to get good.  It was a pity too, as it was a topic that has a lot of emotion surrounding it.  The question was put forth "how do you tell people that your child has Down syndrome?"

We took the easy way out (in a way) when it came time to inform family and friends about Wyatt.  I did it en mass.  I did it just like you are reading here:  I blogged about it.  That's how this blog started actually, all you see here stemmed from "updates" that I wrote to my friends and family on Facebook.  I did it that way as that option was available to me;  the ability to reach as many loved ones, friends and colleagues all at once and to give them all the correct information about Wyatt's AVSD and (then probable, now confirmed) Down syndrome. Telling individual people has been harder.  Colleagues that I am not on Facebook with, people in the neighborhood... there will always be that moment of uncomfortableness.

It is just that:  uncomfortable.

For me, it was never feelings of embarrassment or failure.  The little psych nurse on my shoulder made sure of that.  Most of the time I felt bad, in a way, for the people I had to tell as I knew it would at best be awkward and worst it might "ruin their day".  Other days, on angry days, I would get irritated at the inevitable head tilt and the sympathetic sigh of "oh".

"The Big Tell" as it's known around here, is just another example of how much education, how much work there is to do in regards to Down syndrome.  It didn't seem to matter who we were telling, the answers seemed to have the same basic lack of understanding.  Sean works in a warehouse with a high immigrant, low education population.  Initially he got confused looks as a lot of people did not know what Down syndrome was.  The R word came up, people either didn't know what to say or launched immediately into a story about someone they knew or saw.  The stories didn't always end happy.

When I told friends and colleagues, I got a lot of wishful/hopeful thinking.  Initially it would be his appearance ("He doesn't look it" or "Are you sure he isn't mosaic?" or "Are you sure he has it?")  I would carefully explain that he was karyotyped at birth.  Then it would be "he must have a mild case" or "he looks like he will be high functioning".  Then I would explain that there is no such thing as a mild case... you have it or you don't and how the extra gene expresses itself seems to be totally random, like squirting paint at a canvas.  We don't know what challenges he will have until we get there.  We won't know if he will be able to walk or run or sing or play music or balance a checkbook. The conversation would get uncomfortable. Eventually I got tired of explaining and would just nod and smile.

It didn't seem to matter what the level of education (some of the above were physicians, nurses, therapists, social workers, you name it...), there was an overall knowledge deficit.  Even I was shocked to learn how many different body systems can be affected [read: all of them].  That little extra manifests itself in some strange ways, from itchy skin to different hand prints to heart defects. Even from our little random sampling in group, you can see the extra copy in action as this child has this particular problem and that one has none.

We were lucky as we knew a month ahead of time.  Many people that I have met (either in person or virtually) did not know.  Their Big Tell would be laced with more anger and surprise than mine was, I would imagine.  The anger is real too... why my kid?  I have seen many expectant mothers drinking, smoking and doing drugs.  These people go on to have healthy babies that they cannot care for... Why is my child affected?  Why me?

Each new mother's situation is different as well, the manifestation of their anger/grief is unique to them.  For me, I was jealous of other Moms with only one DS child.  It makes little sense now, but at the time, in those early days of the NICU when I was typing "Down syndrome" into  a lot of search engines, I would be jealous of DS Moms who only had one baby or had one at a time.  "Oh sure", I thought to myself, "your kid can be all they can be... you have the time", whereas I had to divide my time between two babies.   Those days are long past, but it is the truth.  Now, I go to group and I am almost apologetic to bring Zoe as I know that some of those Moms who have just had their first child, a singleton with DS, would give their eye teeth to be in our position. 

It hasn't been all sunshine and kittens over here.  In that month before they were born, I wrote, I went to appointments and I painted.  I tried to make something constructive out of the anger that came from Wyatt's diagnosis.  It was a band-aid at best, but what else could I do?  As well wishers would ask how I was doing, as those friendly hands would pat my belly, I felt like screaming at them. "How do you think I feel?  My unborn son has a hole in his heart! He probably has a chromosomal disorder! How am I supposed to feel right now?"  How could they ask such things, I wondered.  How could they not know?  It felt like a neon sign was hanging over my head, for all the world to see. Instead, I would smile at a clerk and take my change or say "Not long now!" to the Mommies at the bus stop in the morning.  Maybe it wasn't the healthiest thing to do, but it got me through.  I was like a size 20 bridesmaid in a size 14 dress.  I knew that if I exhaled only once, just a little bit, I would totally come apart at the seams and there would be no stuffing it all back in again.

That had improved a bit by the time they were born and in the NICU, but I still had my moments.  When I wasn't at the hospital with them, I was at home, either getting what sleep I could or trying to reach out through the internet.  That is a difficult process too, as there are only certain times that you are actually up to this sort of thing.  There were days where I would type "Down syndrome" as a search term and have my finger hover over the 'enter' key, unable to press it as tears filled my eyes.  Other times I would be fascinated at some obscure part of Trisomy 21 and the tears would come, seemingly out of nowhere. 

Time does heal most wounds and education eases the troubled mind.  Now that I am back to work, I am running into lots of people that I haven't seen in a while.  Most know about Wyatt but there are still a few here and there that don't.  It is still a bit awkward, but I think my positive approach eases things a bit.  That positivity would not exist if it weren't for the work I've done in the mean time.

I had a friend tell me that she had read one of my postings where I had gone to the wrong doctor's office.  She marveled at how well I was doing as she felt that she would have fallen apart right then.  I chuckled and replied "Well, you just have to keep laughing", which is true.  If that incident had happened a few months earlier, I would have had a different story to tell... I probably would have fallen apart.  But, I didn't.  I face palmed myself and got on with my day, like I do most of the time.  It's about perspective.

Perhaps if Wyatt had needed his surgery earlier, life would be totally different, but I don't think so.  We would have hit our stride a bit later maybe, but we'd still be here.  Again, it's all a matter of perspective.  Down syndrome is not the worst thing that could happen by far.  Instead of having one "normal" twin and one "sickly" twin, I have two reasonably healthy babies who are both special in their own right (as is their older brother).  In fact, it was Zoe, the "normal" twin who needed surgery and a hospital stay.  We are lucky to have him in an age where DS resources and understanding have never been better (although there is still a lot of work to do).

If I had any further advice to new or expecting DS parents it would be this:  It is not the end of the world.  Your little one will surprise and delight you daily.  Tell the people that you want to know about your child any way that you want to.  Other people may have issue with this, but that is their problem, not yours.  Educate yourself as much as you can. 

If I had to do it all over again, I probably would do the same thing.  Except, this time, I would have posted the following:

Dear Friends and Family,

Sean and I are thrilled to announce the birth of our twins, Wyatt and Zoe on February 16, 2011.  Although a little earlier than expected, Wyatt came into this world at 10:18 pm weighing 4 lbs, 13 oz.  Zoe followed him three minutes later, weighing 4lbs 1oz.  Both are healthy and happy.  As a precautionary measure, they will have to stay in the NICU for a while. Both have dark hair and brilliant blue eyes and Wyatt has Down syndrome.  We're not sure, but so far it seems that Zoe is the spitting image of me.

We will try and keep everyone updated as time allows.  Pictures to follow!
Jxox

Down syndrome is as much a part of Wyatt as brown eyes are to Zoe.  It is just part of him.  It will affect a few things, how well he does in school, what he does with his life, but it will not change how much we love him or his siblings.  It is not something to be ashamed of, nor is it something to go overboard with in the other direction, either.  His life will involved scraped knees and hurt feelings, just like the other two.

His life has purpose.  He is loved and will love.  I can tell you that right now for free.