On Motherhood

This Sunday is Mother's Day. Although it is celebrated on different days all around the world, most cultures set aside a day to appreciate our Mothers and all that they do for us. Sunday morning will probably see my news feed awash with photos of homemade cards, breakfasts in bed and flowers, some of which, undoubtedly picked by tiny fingers (and quite possibly from the neighbour's garden). It's a day of emotion for most, of remembrance for some and celebration for many.

It is such a powerful word, "Mother".  It invokes many of its permutations, from the sacred to the profane, all of which is dictated by our life experiences.  The word, this title, means so much to so many people.  As a culture, we like adding little specialty titles too:  "Working Mom", "Blogging Mom", "Stay-At-Home" Mom,  even "Absentee Mom".  There is also "Special Needs Mom", but we will get to that one later.

Becoming a "Mother", for me, was life changing. Gone was the egocentricity, the partying, the sense of entitlement. It wasn't just about me any more, it was about this little person. This new sense of "us". Instead of two people in orbit around each other, we were now three, a cohesive unit. It was wonderful and terrifying all at once. Previous to this, I had spent countless hours at the gym, the salon, the nail salon and the mall, shopping for new clothes and new ways to combat my 'age'. I needed to look better, was the thought, to look more like the ideal and inflate what I recognize now as an appalling lack of self-confidence. I spent countless dollars at the liquor store too, trying to soothe myself after the rest of it 'didn't work'. I am one of those people that motherhood changed for the better. I will admit that wholeheartedly and face any criticism that may generate.

After a rough entrance into this world, my son had a mother.  Me.  I was somebody's Mother. (Eek!)

I entered a second phase after my year of maternity leave as I returned to work.  As a "Working Mom", I was supposed to have it all:  a faboo job, a clean house, carefully scheduled play dates and homemade banana bread cooling on the counter.  I did too... well, most of it.  My house, like most, has stages of 'clean'.  However, I still baked the banana bread, I still sat down every day with my son and went through his day and did activities together.

Flash a few years in the future as I have my twins.  Becoming a mother this time meant a whole lot more things.  There were more labels.  Now I was a "Twin Mom" and most notably, a "Special Needs Mom".  It can be a bit confusing at times as the first title usually makes people squeal with glee.  The second one usually elicits a completely different reaction.

Stupid human tricks aside, it's the last one that has caused the most growth and simultaneous heartache/joy.  To be clear, it's not my son that causes me heartache as my critics would contend;  it's society as a whole. I'm not just talking thoughtless vocabulary choices as there are still a lot of people out there who don't have the foggiest idea what 'special needs' are.  In my example, I have a son, a twin, who has Down Syndrome, the most common genetic disorder that occurs in 1:700 live births.  You would think people would know a little more about it.  Instead, I find myself railing against a public perception that is somewhere between 40 and 80 years out of date.  There is a lot of ignorance out there, ranging from being told that my son will break apart my family or should have been aborted, to more milder forms, usually involving a "I didn't mean it that way" or "you're too sensitive". 

I read an article the other day that certainly captured most of it.  Called "7 Things You Don't Know About a Special Needs Parent", it hits the mark on a few points.  Please understand, these are not things that we experience every day, or feel all the time.  But, we will run into all 7 of these things at least once in our lives.  It happens.  I don't begrudge my friends with neurotypical children their pride at their children's accomplishments;  I will admit an occasional pang when listening to a laundry list of some of the more inconvenient aspects of their child's behaviour.  Again, it happens.

Becoming a "Special Needs Mom" can sometimes mean a whole new level of advocacy.   I've joked in the past that this job came with a sword and magic helmet, along with the ass kicking boots that come standard issue with being a "Typical Mom". My thoughts right now are with my friend M who is fighting with an area school board to allow her son admission in the fall.  She has been told that he is "too small", that they do not "encourage sign language", that they "don't have children with Down Syndrome".  It is completely appalling as M lives in the next county, forty minutes up the street from me.  My elder son has had a special needs child in his class both years of kindergarten;  there are many integrated special needs children in his school.  It is not a 'special' school or a trial school, just your average neighbourhood elementary.  It is pathetic that a forty minute drive can mean the difference between acceptance and complete ignorance. 

That is not to say that being a "Special Needs Mom" is any more important than any other type of Mom, because it isn't.  That is one of the pitfalls of this job, to think that this particular journey is any more important or difficult than any other.  I have no idea what it is like to be a "Single Mom" or a "Same Sex Mom", a "Step-Mom", an "Adoptive Mom" or any other title that we can apply to this job.  Despite the content of this blog, it's not my "Special Needs Mom"-ness that defines me any more than my "Twin Mom"-ness or my plain ol' "Mom"-ness.  I'm a Mother, just like the other millions out there.  We all bring our uniqueness to this title, but in the end, we are all the same deep down.  We want what is best for our children. We want a roof over their heads and food in their bellies.  We want them to grow up to be happy, productive adults.

This Sunday we will enjoy the many flavours of Motherhood.  Whether we biologically or adoptively assumed this role, we all have lots in common.  We forget that sometimes.  We all have our quirks, or specialties and even our weaknesses. We all have discovered strengths that we never thought possible.  "Mother" is the most demanding and most rewarding job I know.  It doesn't matter what prefix you put in front of it.

“Why do people say 'grow some balls'? Balls are weak and sensitive. If you wanna be tough, grow a vagina. Those things can take a pounding.” - Betty White

Peace, Love and Transformers

My eldest is turning six this week.  It's a bit of a landmark age as he is decidedly no longer a baby and definitely now a kid.  At four I could tell myself he was still baby-ish and at five I could be totally in denial, but six... six is grade one.  Six is BIG.  Six is well beyond "where the hell did the time go" and entering the city limits of "holy crap am I old".  Six.  Wow.

My husband and I do this every year (and now, twice a year!) to ourselves.  What are we going do for his birthday party?  Last year, when the babies were still very tiny and barely home from the NICU we took Quinn and his friends bowling.  It was awesome.  They did the games, the food, the loot bags... we just brought cupcakes and our wallet.  Sha-ZAM!

Like a lot of people, we are now down to one income and looking for ways to save money.  We are also slackers and realized that we had two weeks to pull this all together (and that left a lot of kid friendly reservations out of the question).  As it turns out, we also seem to have short memories as we have forgotten what it is like to have a bunch of kids thundering through the house.  Let's have it at home, we thought.  But what kind of party?  Recently I tie dyed two pink shirts for Quinn for Pink Shirt Day and it was so easy, Sean offered "why don't we do a tie dye party?"

I'm not an artist but there definitely is a part of my soul where the colours dance.  "Yeeeaaah!"  I answered, "that is an AWESOME idea!"

We priced out the materials and sent the invitations.  I did my research and figured out exactly how I was going to [try to!]  keep six 5 to 6 year olds from dyeing each other.  This would work.  This was do-able.  This was going to be fabulous!

I figured the party favours would be no-brainers.  Peace signs, flowers, doves... things that said "groovy" or "far out".  Not exactly rocket science.  The people at the party supply shop were a different story, however;  after running around the store in a panic, I approached a nice young man who looked like he would know what I was talking about as, lets face it, even his hair looked stoned.  I got a blank "Ah-wha'?" for my troubles.  A second, very caffeinated person that my very mellow friend conferred with, looked at both of us with scorn and asked "you mean 60th BIRTHDAY?!"  At my head shake and attempt at an explanation I found them both staring at me, mouths slightly open.  It was then that I realized that Austin Powers was over 15 years ago and that I was really bloody old (and quite possibly completely daft).

The day of the party dawned cloudy, but the sun came out and warmed it into a nice day.  The kids trickled in, one by one.  A few parents (that we also happen to be good friends with) hung around and my Mom visited us for the day.  We had to throw the shirts into the washing machine as they all had to be damp for the best results, so as we were waiting, we did our craft.  I had forgotten that most of them were daycare kids and therefore, preternaturally crafty.  They were all super fast and done before I had a chance to think again, so I put their shoes and coats on them and threw them outside with some chalk to decorate the fence.  I got enough time to get the shirts out of the washer and wrap up our shirts and show the parents what I meant when my girlfriend opened the door to what we thought was screaming.  Turns out, it was chanting: "Tie Dye Par-TY!  Tie Dye Par-TY!".  This should have been heeded as what was to come (and this is before sugar). They all galloped in and we got ready to tie up our shirts.  

The kids had a fabulous time deciding what they wanted to do to their shirts.  Once everyone had a arranged their rubber bands, I has them come out to the yard one by one. They picked their colours and critiqued my technique.  One of my friends had brought a giant smock that they were in turn wrapped up in and I had picked up some small gloves for them to work with.  I think they thought that the rubber gloves were the coolest thing ever, as they all stood there like mini surgeons with their hands up until they had to point something out, which they did proudly, all the while admiring their gloves.  The kids were amazing.  They told me all about rainbows and the sky and their take on the Earth (Sunday was Earth Day as well). Again, this was before the snacks.  As I was finished each shirt and explained to its designer that it had to stay with me a bit longer, I told them to go in and get something to eat.

I'm so proud of my little artists!

You may be surprised to learn that we are not big on processed sugar around here (at least, when it comes to the kids).  They had their choice of 100% fruit juice (no added sugar), milk or water and veggies, fruit and chips/party mix to eat (it's a party, you need some junk). There was still a lot of natural sugar to be had, so they were all happily bouncing around screaming playing in the basement. One of the Dads kindly volunteered to supervise and had to switch out with another parent due to sensory overload (and that's with him having only partial hearing)!  He told them he had to go check on the adults and (creepily) in unison, they answered "Good!  It's too quiet up there!"

It was no where near time for cake, so I thought I'd grab a snack and chill for a minute. I was jolted from my veggies and Pepsi (I get the added sugar) by another chant, this time: "CAKE!  CAKE!  CAKE..." that shook the floor.  Well, I'd better get that cake rocking then. After my small mishap with cake sparklers (don't ask...), the kids gallumphed upstairs and we sang Happy Birthday to Quinn. 

About 20 minutes later both the sugar and the following epiphany hit:

Giving children sugar is exactly the same as giving adults alcohol.

It's true.  Compare the birthday party to the average adult party.  I use boys as an example but trust me, it is the same with girls.  It starts off easy with the mutual friend introductions.

Host: "This is Bobby, he is my school friend and this is Johnny and we swim together.  Both of you like Transformers!  Yay!
Bobby: "I like the Autobots!"
Johnny: "I like the Decepticons!  Let's play!"
Bobby: "Roll out!"

Host: "This is Bob.  He and I went to uni together.  This is Jean, we work together.  You both are hockey fanatics.
Bob: "Boston?"
Jean: "Nope.  Montreal."
Bob: "Cool.  Beer?"

As both parties go on, they get louder and louder.  "Cake!  Cake! Cake!"  "Chug! Chug! Chug!".  Finally, as things are winding down, the refined sugar cake and ice cream comes out.  For grownups, there's shots.  Suddenly, what was previously a fun time, is not.

In both cases, something gets knocked over, spilled or broken.  Everything is really loud and boisterous and inevitably, someone is crying.  Finally all it takes is one bad look and this happens:

Bobby: "Autobots are the best"
Johnny: "Decepticons RULE!"
Bobby: "TAKE THAT DECEPTICON!"

Bob: "Guy LaFleur.. oh yeah, there's an athlete!  How much did he smoke a day again?
Jean: "Prob-bab-lee less, den dat twat, Bobby h'Orr!"
Bob: "☠☠☠☠ YOU!"

...And in both cases, it is ON!

Eventually, people start going home.  In our case, we still had a bunch of boys and one girl left in the basement, holding her own in what was rapidly becoming The Lord of the Flies.  Thankfully, it was pretty easy with the kids:  we separated the Autobots and the Decepticons and peace and love was restored to the universe.  With grown ups, it usually doesn't end until somebody calls the cops.

No one got hurt and everyone now has a piece of wearable art.   At least for the majority of the afternoon it was a celebration. Quinn got what every kid really wants too, to play with his friends.  We had a little more to celebrate than usual as my Mom and Quinn share a birthday (hers is a milestone number this year as well).  Zoe got her first taste of potato chips as she cruised everyone's plates and later got a burst of sugar herself when she got a lick (or two) of icing.  (She later flumped into a heap in the middle of her crib and did not wake up until late the next morning).  Wyatt decided that it was a perfect day to sit up all on his own, which he did and surprised a whole room of adults.  He has yet to repeat his performance, but it was enough to make a room full of parents happy.

The next week or so is full of appointments and tests and all sorts of medical things for Wyatt.  There will be anxious feelings and sleepless nights.  There will be planning and sorting and organizing until we are exhausted and crabby and don't feel like talking any more.  This entry, for the most part, isn't about Wyatt or Down Syndrome or the usual things... so much so that I considered posting it on my other blog.  It is however, about family and the people in it.  Sometimes we take the front seat, sometimes we take the back.  This week is all about Quinn and his birthday.  Soon, it will be all Wyatt again.   In the meantime, we will celebrate what a wonderful big dude Quinn is becoming and the great guy he will one day become.  This week is about changes, happy thoughts... and cake.

Peace and Love, Baby.

Roll out!

Wordless Wednesday: Springtime Fun

(Clicky to embiggen)

Defending the Boob

I'll start off right now by saying this post isn't for everyone.  It has boobs in it. 

Lactating ones.

I realize that half of you stopped reading after the last line, but to be fair, I've probably gained a few weird fetish dudes by now so I'm sure it all balances out somehow. 

In any event:  My name is Jen and I am an extended breastfeeding Mom.

As their biological mother, I chose to breastfeed all three of my kids.   I did this as I believe this is the best start that I can give them. I am not here to make you feel bad if you didn't;  we are fortunate enough to live in an area of the world that allows us options.   However, it's my blog and right now we are all about the boobies. 

It's sad in this day and age that you have to defend your choices as a mother, no matter what direction you take.   I am very lucky to have been able to breastfeed my twins up until now.  I struggled with my eldest for 6 months before giving up and switching him to formula. I wish I had known then what I know now (and had gotten a decent pump!)  The babies are now almost 14 months old and we are still going strong.   When Wyatt was born, I was open to any an all options for him in particular;  if it turned out that he needed to be tube or bottle fed pumped milk, then I would have done that.  We were very pleased when he was able to breast feed; not only would it provide the best dietary option and boost his immunity, but the increased resistance would give his oral-facial muscles a better start. 

As part of the 31 for 21 Blogging Challenge that I participated in last October, I put out this Factoid Friday:  7 Good Reasons to Breastfeed Your Baby with Down Syndrome.  Babies with Down Syndrome commonly have feeding problems;  I came across a study from Italy where 57% of babies with DS born in the four university hospitals were bottle fed (Pisacane, etc, 2003)  Depression and frustration were two of the most common cited reasons.  Feeding difficulties was the most common.  Only 30% of the children admitted to the NICU were breastfed.  I've run into similar studies from South America.  My advice to any new DS parent facing their options would be to do the research.  If you can do it, do it for the 7 Reasons that I've listed.

Now that the babies are 13+ months, I've now moved into very uncharted waters.  I'm now part of a new category:  the extended breastfeeder.  I have had (mostly well meaning) folks ask me "how long are you going to keep that up?" and the like.  (Also, "why are you still feeding both of them?", like I can pick one of them?) The stereotype, of course, is the "crunchy" mom who breastfeeds until the kid is in middle school... and yes, I have been asked that as well. Both Wyatt and Zoe are eating a variety of solid foods.  When I am at home, they continue to receive breast milk (they are supplemented with homogenized milk when I am working and there is not enough pumped milk in the fridge).  Why am I still doing this?

Really, it's more like: why the hell wouldn't I be?

There is no medical explanation as why I should cease breastfeeding my twins;  those 7 reasons still apply.  Between my insane work schedule and, well, life, any close, quiet snuggle time I get with the babies is important.  So what is the issue then, other than a vague societal idea that it is somehow weird and unnecessary?

To be honest, I did think about quitting.  It would be easier in some respects.  Pumping at work can be a drag, when all I want to do on my break is close my eyes for a few minutes or possibly eat something at a comfortable pace.  I might also want a glass of wine or two (or three) some evening at home. Then there is Zoe, who now has a mouthful of teeth.  Sharp, needle-like teeth.  I probably don't need to expound on that one. 

Ultimately, for me, it comes down to Wyatt.  Yes, he is eating solids, well above what is "expected" of a child with Down Syndrome at his age.  However, is solid food and cow's milk the best I can do for him and his special needs?

It is true that after 6 months, with any baby, supplementary feeding is recommended.  However, that does not mean that breast milk ceases to be of any nutritional value.  In fact, once you are over the year point, it is the exact opposite.  In 2005, Mandel determined that milk from mothers who had been breastfeeding for over a year showed "significantly increased fat and energy contents, compared with milk expressed by women who have been lactating for shorter periods."  To further expound on this, Dewey (2001) found that "Breast milk continues to provide substantial amounts of key nutrients well beyond the first year of life, especially protein, fat, and most vitamins."  In fact, when analyzed, 448 ml of breast milk (in ages 12-23 months) provides (of the daily requirement):

• 29% of energy
• 43% of protein
• 36% of calcium
• 75% of vitamin A
• 76% of folate
• 94% of vitamin B12
• 60% of vitamin C

After the first year then, breast milk continues to be a valid form of nutrition for a toddler.  What else can it do?  Building on our previous 7 reasons:


"1)  Breastfeeding provides antibodies and protection from illness"

After the first year, breast milk continues to provide immunity and fight infection.  In fact, it has been shown that breast fed toddlers have less infections and a reduced severity of illness (Gulick, 1986). Also, breast milk has an increased amount of antibodies in the second year (Goldman, Goldblum, Garza, 1983) which increases even further at the time of weaning (Goldman, 1983).  It would seem that extended breastfeeding is a beneficial practice for the health of any child, especially one who is statistically prone to infection and illness due to his genetic make up.

"2)  Breastfeeding improves mouth and tongue co-ordination which will aid in speech and language development"
  
Breastfeeding provides a variety of "positive effects on the development of an infant's oral cavity, including improved shaping of the hard palate resulting in proper alignment of teeth and fewer problems with malocclusions." (Palmer, 1983). In terms of both motor skills and early language development, another study found "The proportion of infants who mastered the specific milestones increased consistently with increasing duration of breastfeeding." (Vestergaard, etc,1999).  Therefore, extended breastfeeding would only continue to enhance speech and language development.

"3)  Breastfeeding promotes increased brain growth due to DHA, a fatty acid that is not found in most formulas or cow's milk." 

Extensive research in this area has shown that there is a direct relationship between breastfeeding and cognitive ability.  Of particular note is a study from 2002, whereby "a significant positive association between duration of breastfeeding and intelligence was observed in 2 independent samples of young adults, assessed with 2 different intelligence tests." (Mortenson, etc, 2002).  Extended breastfeeding then, would further aid any child's cognitive development;  ostensibly providing a boost to one who was developmentally delayed.

"4)  Breastfeeding provides the opportunity for extra sensory stimulation as there is more skin to skin contact"

Many studies have shown that breastfeeding enhances motor skills and overall development.  In fact, "The psychomotor and social development of breast-fed babies clearly differs from that of bottle-fed ones and leads at the age of 12 months to significant developmental advantages of the psychomotor and social capabilities." (Baumgartner, 1984).  As the senses develop the more they are stimulated, it would be easy to infer that the more one is breastfed, the more developed the senses would become.  It is obvious how this would be helpful to a child with Down Syndrome.

"5)  Breastfeeding fosters closeness"
and
 "6)  Breastfeeding enhances mothering skills"

I think this quote says it best;

"A major reason for practicing sustained breastfeeding in industrialized countries in the face of social disapproval has been the belief that it provides a closer bond between mother and child. These children are often said to be more secure and more independent. They continue to remember this close bond and their mothers believe that it continues in some sense, even into adolescence, easing the difficulties in the mother-child relationship during this period." (Grenier, 1995)  

The strong bonds created with breastfeeding appear to last well into childhood, at least by our perceptions.  Ferguson found "significant associations between the duration of breastfeeding and maternal and teacher ratings of conduct disorder obtained at six, seven and eight years" (Ferguson, et al, 1987). 
 
"7)  Breastfeeding reduces the risk of Type 2 diabetes"

Breastfeeding your child reduces his or her chances of developing Type 2 diabetes.  What is not commonly known is that extended breastfeeding decreases the mother's chance of developing Type 2 DM as well.  According to the Journal of the American Medical Association:  "increased duration of breastfeeding was associated with reduced risk of type 2 diabetes".  In fact, for each year of lactation, a woman decreases her chances by 15%.  (Stuebe, etc, 2005).  With that in mind, if a woman has two children and breastfeeds them both for two years, she has reduced her chances of developing Type 2 diabetes by 60%.  Other diabetes related finds of note:  suppressed lactation actually increases the chances of diabetes. Also: "lactation was associated with improved glucose tolerance, fasting glucose, and total area under the glucose tolerance curve. In an analysis stratified by use of insulin during pregnancy, fasting glucose levels were significantly lower in the lactating group." (Stuebe, etc, 2005)

As it turns out there is also some evidence that extended breastfeeding reduces the mother's risk of certain cancers, rheumatoid arthritis, and osteoporosis.


Contrary to popular belief then, extended breastfeeding (past the first year) has valid benefits for both mother and baby. I must admit, although it can be tricky (mainly due to other people), it provides a quiet time that I can spend with both my babies at once.  They make eye contact with me, they make eye contact with each other.  Occasionally, one will poke at the other, but that is the story with any siblings.  It's also easy and free, which scores bonus points as well.  I won't know for sure if it will make the difference between Wyatt taking this course or another in high school.  I will know that when I do get a chance to cool it for a bit, I can rest easy knowing that I did my very best for him and his sister.  Which is all any of us aspire to do, really.

Long live the boobies.  To my twins at least, they're like no udder. 



---------------------------------
Baumgartner, C. Psychomotor and social development of breastfed and bottle-fed babies during their first year of life. Acta Paediatrica Hungarica 1984; 25(4):409-17. 

Dewey KG. Nutrition, Growth, and Complementary Feeding of the Breastfed Infant. Pediatric Clinics of North American. February 2001;48(1).

Ferguson, D. M. et al. Breastfeeding and subsequent social adjustment in six- to eight-year-old children. J Child Psychology and Psychiatry 1987; 28:378-86.

Gulick EE. The effects of breastfeeding on toddler health. Pediatr Nurs. 1986 Jan-Feb;12(1):51-4.

Goldman AS et al. Immunologic components in human milk during weaning. Acta Paediatr Scand. 1983 Jan;72(1):133-4.

Goldman AS, Goldblum RM, Garza C. Immunologic components in human milk during the second year of lactation. Acta Paediatr Scand. 1983 May;72(3):461-2.


Mandel D, Lubetzky R, Dollberg S, Barak S, Mimouni FB. Fat and Energy Contents of Expressed Human Breast Milk in Prolonged Lactation. Pediatrics. 2005 Sept; 116(3):e432-e435.

Mortensen EL, Michaelsen KF, Sanders SA, Reinisch JM. The Association Between Duration of Breastfeeding and Adult Intelligence. JAMA. 2002;287:2365-2371.

Nursing Beyond One Year by Sally Kneidel, NEW BEGINNINGS, Vol. 6 No. 4, July-August 1990, pp. 99-103.

Palmer, B. The Influence of Breastfeeding on the Development of the Oral Cavity: A Commentary. Journal of Human Lactation. 1998;14(2):93-98

Pisacane A, Toscano E, Pirri I, Continisio P, Andria G, Zoli B, Strisciuglio P, Concolino D, Piccione M, Lo Giudice C, Vicari S.  Down syndrome and breastfeeding.  Acta Paediatr. 2003;Dec;92(12):1479-81.

Stuebe A., Rich-Edwards J., Willett W,  Manson J, Michels M, Duration of Lactation and Incidence of Type 2 Diabetes.  JAMA 2005;294(20):2601-2610.

Sustained breastfeeding, complementation, and care by Ted Greiner, Food and Nutrition Bulletin, 16(4):313-319, 1995

Vestergaard M, Obel C, Henriksen TB, Sorensen HT, Skajaa E, Ostergaard J. Duration of breastfeeding and developmental milestones during the latter half of infancy. Acta Paediatr. 1999 Dec;88(12):1327-32.

What is this "Normal" of Which You Speak?

Today is Saturday, a unique breed amongst the other days.  To many, it's the first day in their two days of respite from the rat race.  To me, a shiftworker, it's just another day.  Today, in fact, is day four of nine, where I am supposed to be cleaning the basement and the stairs.  Since my sciatica has been ranging from cripplingly painful to moderately bastardly in the last week, we can safely assume that isn't happening today.  Instead I will blog...

Today's entry is made possible by my shiny new 'puter which came about solely because my other "laptop" decided to wink out and not display anything any more.  I say "laptop", as any sort of illusion that this thing was in any way portable had long since died out.  In the six years that it had been in almost constant service, we had first witnessed the demise of the battery which forced it to be plugged in at all times.  My then three year old son decided to play with it one day and in the space of 2 seconds had managed to rip off the "S" key.  It then became permanently tethered to both the wall and a desk as we had to plug in an external keyboard.  It has been moved from the basement to the bedroom and finally to the living room with the advent of the twins.  Where it sat, for many months, wheezing along with an external drive in situ, which kindly did all its major remembering for it.  Now, *poof*. It is blind.  Unfortunately, I have a whole whack of things on there that I did not back up and need to get off there before we either relegate it to the recycle centre or rebuild it for our son.  Yes, the same one that ripped off the S key.  The irony is strong with that one.

Saturdays have taken on another meaning for me;  Special Saturdays.  Those familiar with Twitter lingo will recognize #CT (Charity Tuesday) #FF (Follow Friday) and the like.  The special need community has started another: #specialsaturday, in the hopes of raising awareness.  This week's topic is technology:  how much Team Logan relies on their technology was highlighted this week with the "laptop".  Not only is it a much needed source of respite and an outlet for me, but it is also the hub of the house.  (Thank goodness it is back...)

My bloggy friend Renata over at Just Bring the Chocolate has come up with what I think is a brilliant way to spend a Saturday.  Unlike your typical blog hop, where participants jump from one to another to get to know other bloggers, she's added a twist.  A challenge, if you will.  Instead of dumping my URL and running ... er... trying to put your best face forward or whatever it is that you do, this time, there's work involved.  Renata has challenged us to "redefine normal".  I love this concept.  Love it.  In her words:

"There is no such thing as the normal family, just varying degrees of weirdness. Just like the pile of things that sits hopefully at the bottom of the stairs waiting to be carried up day after day, after a while, we don't even see our own idiosyncrasies. Parents of special needs children, arguably, embrace this weirdness to a more impressive level than many other families, and, should you come across us, you shouldn't be surprised if some of it leaks out into everyday life."

Oh yeah.

We've always been a bit "off".  Even before children, my husband and I were geeks.  We are, what I like to refer to as "delightfully eccentric".  We read a lot.  We know a little about a lot of different topics.  I am creative without actually being an artist of any sort of description.  When our eldest was born, we just incorporated one more into our weird little herd.  Quinn, as it turns out, is really smart, funny, sensitive and really into arts and crafts.  If that kid ever figures out what he is really good at, he is going to be rich.

We amped up the oddity factor when I conceived our twins.  Rare in itself, having twins brings on its own set of unique problems and creative solutions.  We've adapted behaviours for survival.  When one of those twins turned out to have special needs, there was a whole other level of urgency added to "adapt or be destroyed".

To prove Renata's theory that we overlook our idiosyncracies, I had a really hard time coming up with one little thing that makes us unique (since we have adapted everything quite well into everyday life).
I have been very fortunate that other than one surgery thus far with my "typical" twin, we haven't had to do much extra with Wyatt's Down Syndrome medically, other than go to a ridiculous amount of appointments.  By "ridiculous" I mean "mind bogglingly insane amount" as both kids have their own issues that require attention.  As they were 6 weeks premature, Zoe is followed by the neonatal clinic at the hospital.  We have a couple of appointments a year there as they evaluate her development.  She also has a Family Doctor, a Pediatrician and a Surgeon (who repaired her hernia).  Wyatt, so far, has the following:  a family doctor, a cardiologist, a cardiac surgeon, a pediatrician, an ophthalmologist, an ENT, an audiologist, a speech therapist and OT/RT/PT.  My kids need an assistant, which has handily come in the form of their stay at home Dad, another unusual thing about our family, when you get right down to it.  But, I don't think of these things, I only consider ourselves as fortunate as there are no tubes and wires with Wyatt; we have been spared the onset of CHF with his AVSD so far.  There have been no medications to give (other than mineral oil in his ears).  We have been "lucky".

Furthering her concept along, I was wandering around the house doing this and that and trying to come up with what made us different;  as I was doing this, I kept having to rearrange, pick up or sort out piles of stuff.  In our house, "the pile of things that sits hopefully at the bottom of the stairs waiting to be carried up day after day" is literally just that.  Piles and piles of stuff.  We have piles and piles of extra things that parents of singletons, special needs or not, simply do not have to cope with.  For example, our main floor consists of a large eat-in kitchen and a combination living and dining room.  Since Wyatt and Zoe have come into our lives, I no longer have a living-dining room; rather I have an area with couches and a main floor nursery.  The table has been moved out, creating an open area for the kids to roll around and play in.  There is a play pen in there at all times, a ready "penalty box" or soft place to put sleepy little people.  In front of our antique sewing machine, there lives what I like to call our "therapy corner";  a collection of items used for Wyatt's daily PT that have either been adapted for the cause or brought for that purpose.

Our regular readers will recognize The Bean and The Speedbump.  Along with these are (left to right):  2 nursing pillows, a stack of pillows, two "banana" neck stabilizers, an infant anti-rolling brace thing, a rain stick, a blow up roller with balls inside, two Bumbos, two stuffed friends, a yellow happy face ball, a beaded wire toy that suctions to the floor, an infant head rest pillow, the safety mirror,  a tambourine, the gymini-jillikers, a spare bathtub and two Sleep Number bolster pillows.

Any or all toys can be commandeered for the cause at any time:  we have four baskets that are about 1 foot cubed, full of baby toys that are jammed under the coffee table.  Stuff.  We has it.

Team Logan is nothing if not adaptable.  It's "do or do not. There is no try".  Renata has brought a good point forward:  in all our trying to show inclusion, to show our "normalcy", we've started to overlook the little things that make us, us.  We've forgotten what it was to incorporate every adaptation into our routine and as a result, minimize the hard work that we do.  Along with inclusion, I think we have to celebrate that too.  We do work hard.  We don't want to lose sight of that, even if it is a labour of love.  We have our little quirks too.  So, time allowing, I will be participating in the "Define Normal" bloghop.  Once a week, we should have a time to reflect on our little peculiarities, to embrace our differences with a little whimsy.

...And lettin' our freak flag fly, baby.

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Don't forget to vote for Down Wit Dat as About.com's Reader's Choice for Special Needs Parenting Blog.   You can vote once a day, every day until March 21 using an email address or signing in through Facebook.  You can vote HERE.  -Jxox

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There's That Word Again...

Today marks a special day of sorts.  It is not a birthday or an anniversary.  It is not a reason to break out the best glasses and pour the bubbly.  It is not the type of day where everything just seems brighter.

In a way, today is a day that I wish did not have to exist.

Today is a day of action and of awareness.  Today is 3-7-12, the day chosen to "Spread the Word to End the Word".

The word in question here, is "The R Word" or "retarded".  It is a word that means many things to so many people.  To people like my son Wyatt who have learning disabilities, it has a whole other set of meanings that you may not be aware of.

It is a word that, not surprisingly, disappeared from my vocabulary when we learned of the high probability that my unborn son had a chromosomal disorder.  It is a word that I had used, many times in my life to mean many different things, stemming all the way back to childhood.  I saw this word like any other word, in the sense that it is the individual that gave it power.  Although I had never used this word to harm one who was "less fortunate" than myself, I felt myself entitled to sling it from the hip like any other.  I used it freely, much like the cuss words that I regularly weave together for the amusement of my friends and family. 

I stopped using this word.  I stopped using this word initially out of respect for my son.  As our lives have progressed, I have realized that I stopped using it out of respect for others, for those that have gone before... and also out of respect for myself as a mother and a human being.  I have realized its true face and it is a monster.

The main issue is the continued casual use of "retarded". I understand that it may be difficult to connect the dots between bullying a "retarded kid", to calling yourself the same thing when you lose your car keys.  Or describing your dog's behaviour when he is chasing his tail.  Or any number of silly little things that may happen to you in the course of the day.  It's this use of the word "retarded" that I wish to address.

The word "retarded" did, yes, originally come from a medical context.  It is still used in places like mental health, not to describe those with a learning disability, but rather to describe a "slowing", as in the phrase "psychomotor retardation" (an acute mental health symptom to describe halting or sluggish functioning).  It was originally used as a blanket description for those with an "intellectual impairment", a permanent condition.  Wyatt, if born 20 years ago, would have been referred to by this term by his physician. If born in Europe less than 80 years ago, he would have been killed at birth, forcibly sterilized or been starved or gassed to death as "unfit" for life because of this term.

Like many other words in the English language (that shall remain nameless), that word was changed and became to mean many more things.  It became interchangeable for "stupid" and "silly" and "defective" and "ill conceived" and "not thought out" and a plethora of other definitions.  It also became a symbol of hatred, of mockery and of shame.  Shameful for parents who had borne such a child.  Hatred for abusers and mockery for those that bore the brunt of the abuse, many of whom could not defend themselves or possibly comprehend what was happening to them (which made them even more accessible as targets).  Understand too, that these are the times when people with learning disabilities were locked away and forgotten, allowed to rot in institutions without stimulation and without encouragement.  There was no in-home OT, there was no nourishing of the mind or spirit.  They were not allowed to develop, they were not allowed to achieve their potential.  They were discarded.  Like human garbage.

Times have changed, yes.  Luckily we have evolved and educated ourselves to not pick on those who are differently-abled.  At least in polite company, we do not use this term any more.

However, human nature being what it is, we don't like being told what to do.  Most people have no context; they don't know anyone with a learning disability.  Many people see this as "one more word that I cannot use" at the very least and "censorship" at most.  This fosters resentment.  I dig that.  I understand that because, once again, I am new at this special needs parent thing.  I understand as I used that word to mean many of those things up until about a year and a half ago. 

Spread the Word to End the Word and the day to day efforts of so many is not the embodiment of a group of parents (or the government, or whomever you picture) wagging their fingers at you telling you that you cannot do something.   It's not that paternalistic.

It's about people like Wyatt.

Whether you wish to admit it or not, it is about Wyatt and people like him.  Yes, you are not directly pointing at and making fun of a child with learning disabilities.  You are not throwing my son to the ground.  You are not torturing or starving him to death.

What you are doing is using the language of those who would (or have in the past).

When you use the word "retarded", you are using an antiquated word that, unfortunately has come to symbolize the struggle of people with learning disabilities.  You are using the language of the bully, you are using the language of the abuser.  You are using the language of those who hurt... and you are using it to describe your new bank fees.  When you do this, you are not only being offensive in the most literal definition, you are also being demeaning in the most literal sense of that word.  You are attributing (for example) my son's daily struggle to learn to eat, to learn to sit, to learn to read, to learn to speak, to your own inability to grasp your company's new vacation policy or what you think of some new rule in your kid's soccer league.

More often than not, it seems that people use this word to describe things that they themselves don't understand or find too complicated. There is irony here.

I have been told that I am "out of line" for asking people to not use the R-Word.  I have been called selfish, blind, misguided, oversensitive and foolish.  Oh yes, and the R-word itself, again just for irony's sake.  I have been told "it's just a joke" and I have been called a "fascist". (Once again, this is what fascists do to people with disabilities.) People "don't mean it that way" and when they use the word, somehow it is supposed to be transformed into something different.  Like making candy floss or sawing a lady in half.  Unfortunately, in reality, it's still just smoke and mirrors. All you've managed to do is show me how you can Bedazzle a turd.

It's not cool when those around me do it.  It's not cool when Hollywood does it.  I'm now going to do something that I rarely do:  eat my words.  Once upon a time, when this was all fresh and new and I was determined to be the "cool" parent of a kid with Down Syndrome and not be the word police, I said something that I now wish I hadn't.  I said that I did not believe that using this word in familial company or in an agreed safe place (such as among friends) was wrong.  I even joked that we were reclaiming this word.  We were going to take it back. 

I was wrong.  It is never okay.  (Chomp, chomp...)

When I have the rare moment to actually sit down to a movie or a TV show, I , like everyone else, want to be entertained.  For a block of time, I want to escape my reality.  I want to suspend my disbelief.  What I don't want, is to be dragged back into a reality where people "have fun" at the expense of others, just to get a cheap laugh.  Learning disabilities are not a punchline.

Maybe you think this is my problem or I am being "too sensitive", let me ask you this:  what if we change that word to "gay".  Or the N-word. Pick your slur, one that is used to degrade and demean a group of people. Not only is it not funny anymore, but I'm betting that there is a group of people out there, like a GLAAD or an NAACP who will tell you exactly how unfunny it really is.

Unfortunately, Wyatt doesn't have a group like that.  People with learning disabilities don't really have a watchdog champion. Those with Down Syndrome especially, being such a physically visible group, are considered, by some, "safe" for ridicule. Check YouTube, if you don't believe me.  After all, a guy with Down Syndrome isn't going to really ever be a police officer, right?  A person with Down Syndrome is probably never going to run a multi-billion dollar corporation or make sure you get your government assistance.  People with Down Syndrome probably won't be in charge of hiring or firing you in the near future.  There are less and less people born with DS these days too.  So, what's to lose?

I understand this is an argument that I am never going to win.  I understand there will always be bigotry and always be ignorance.  I understand, some can't grasp this concept and will blithely continue on.  You understand I will call you on your use of this word. You understand it's not okay and I consider you intelligent enough to know better.  You understand, you and your ilk will have no place in my life.

Bigotry, in any form, has no place in my world.  "Everyone does it", "it's just a word", "I don't mean it that way" are simply not acceptable.  Not any more.

There will be those that disagree, there will be those that get mad.  Feel free to un-friend, stop reading, whatever it is you do.  Before you go, stop for a second and ask yourself why you are feeling this way.  Honestly.  If you look deep enough you may find an answer that surprises you.  You may find a little guilt.  You may find that you know you are doing something wrong;  You may find that you are actually mad at yourself.

There's a couple other R words that I would rather see used:  Responsibility and Respect.  Responsibility for one's own words and actions... Respect for all.

"Retarded" is a constant reminder of struggle that thousands of families, including my own face on a daily basis.  It is a constant reminder that there are some very cruel people in this world.  One day I will have to explain to Wyatt's twin and older brother why it is that some ignorant kid (with even more ignorant parents) called their brother a horrible name or started a fight over Wyatt. I will one day, have to explain to Wyatt what cruelty is. What makes people do hateful things, why they must make others feel horrible so that they can feel better about themselves. Why they teach their children that such behaviour is okay.

But not today.  Not in the immediate future.  I have children to raise as happy, healthy, productive and caring members of society.  For now, that ugliness will be locked firmly outside.  Outside Team Logan.  Outside our vocabulary.  I don't care how many groups I have to leave or TVs I have to turn off or products I will stop using.  It will be outside, in the cold and the dark and be forgotten.

Where it belongs.

Make today the first day.  Take the pledge.  Make the conscious decision to stop using a word (and it's many permutations) that hurts those that certainly do not deserve it.  Do it for Wyatt, do it for yourself.

End the Word.

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If you wish to say something about this blog, you can do so HERE.

Happy Birthday, Babies!

A whole year has gone by. 

I'm still in shock at this realization.

One year ago today saw the beginning and the end of a lot of things.  One year ago brought us some harsh realities, packaged up into two bundles of joy.

Last year, my twins were born six weeks early.  Wyatt first, then his sister Zoe a few minutes later.  Wyatt weighed in at 4 lbs, 13oz, while Zoe was much smaller at 4lbs, 1oz.  Both had oodles of dark hair and the gossamer skin of prematurity.  Both had bright blue eyes.  You could tell right away that Zoe was going to be the spitting image of me.  To the medical staff at least, you could tell right away that Wyatt had Trisomy 21 or Down Syndrome. 

I was certain of his diagnosis as I looked over at his warmer a few moments after he was born.  Each baby had a team at his or her bedside, including a physician and several nurses.  Zoe's team was joyful;  there were jokes and occasional pauses in their work as they reflected on some nuance of my beautiful, yet feisty daughter.  Wyatt's team were a stark contrast.  They spoke in hushed, respectful tones as they worked on my son with efficient, businesslike hands. My husband jokes that my writing is often a string of homilies.  He's right.  This is the moment that began as I looked back and forth across the surgical suite, comparing and contrasting Team A and Team B as they saw to the needs of my newborn children.

Wyatt's cry at birth was different than Zoe's.  When he let forth the first breath of air that he had sucked into his tiny lungs, he sounded all the world like the newborns you hear on TV... only in short bursts. Zoe's pitiful wail would change shortly to the commanding screech she has now, but I did not hear her until after she had been totally suctioned out.  "She is the one that sounds abnormal", I remember thinking to myself.  "He sounds just fine to me."  I would later understand that she sounded like any other premature baby, but at the time, it gave me something to rationalize.  After the Neonatologist gave his awkward pronouncement,  they eventually brought Wyatt over, sleepily bundled up for me to see.  I gave him a quick peck before he was taken away by his procession of gowned attendants to the NICU.  "He doesn't look like he has it..."

Zoe was brought to me, mummified and scowling.  She was so tiny... so much smaller than her twin.  Even bundled up, she was still smaller than a football.  Zoe was too far away for me to kiss and I was about to ask for her to be brought closer when she was handed off to my husband and they too were whisked off to parts unknown.

"So small... So small.  Please be okay...  Please..."

I did not get to hold my children until the next day when I dragged myself and my IV pole almost the length of the hospital to the NICU.  After a night of lying half awake and in constant pain, I needed them and they needed me. Anyone that ever refers to a Caesarian section as "the easy way out" need only talk to me and hear the particulars about that walk.  My nurse was very concerned as I forced myself along... after all, we were supposed to be just dangling my legs over the end of the bed and here I was, on a mission, with my ass hanging out of a johnny gown.  She knew better than to stop me however, for at that moment, I would have crawled there over her broken body if that is what it took.

The babies were in separate isolettes and I visited each one in turn.  I was there for over three hours as my nurse came and went with a wheelchair, hoping to coax me back to my bed where I needed to rest.  The sad part was that I was resting;  the NICU, despite housing very sick babies, is the quietest place in the hospital.  The frequent spine-jarring announcements are hushed, the lights are muted and everyone talks in dulcet tones.  I spent a good while with each of them and examined Wyatt myself.  His ears were smaller and lower on his head and had a telltale fold.  His eyes were almond shaped with epicanthal folds.  His nose had barely a bridge and his face was flatter than hers.  His skull was shaped differently, being wider at the back and smaller at the front, giving the appearance of "points" on either side.  The back of his head was flattened and you could feel that his soft spot was open in a V to his eyebrows.  His hands, much to my delight, did not have a singer palmar crease and his toes did not appear to be parted with a sandal gap. Other than his heart, no other "abnormalities" were discussed.  "Maybe he's Mosaic... "  My husband came and finally convinced me to return and if not rest, eat.  Which I did, ravenously.

Flash forward a year and here we are.  My husband is in the kitchen putting stew in the crock pot and the kids are having great time playing together on the floor behind me.  Those fragile little humans are now thriving babies, who astound and delight us daily.  The only thing that has developed more in the last year is us.  Our thinking, our way of doing things.  There was a time where Wyatt's diagnosis would have meant something terrible.  (It isn't.)  There was a time where I would not have thought that I would have so much interest in genetic disorders and have time to make a difference.  (I do).  There was a time where it seemed that nothing was going to be right again.  (It didn't turn out like that at all).  There was a lot more born a year ago on this day than just these two babies:  Team Logan,  our network and support systems, our awareness, our desire to educate and advocate.  Two parents of a special needs child came into existence too.  We have all come so far.  It has been very difficult at times, of that I will not lie.  We've made therapy a casual everyday thing, something we can do while we play.  We make mealtimes fun.  We explore our world through the kids eyes, whether they be blue, brown or have Brushfield spots.  We love our son and embrace his differences just as much as we do his "sameness".

Today we celebrate many things along with the birth of our children.  Today will celebrate life and love.  We celebrate inclusion, we celebrate acceptance.  We celebrate strength and endurance.  Knowledge, education, awareness, advocacy... the list goes on and on. 

We celebrate new beginnings today. 

Happy Birthday, Wyatt and Zoe.  You are both perfect in every way.

You guys ROCK!