Wednesday, March 27, 2013

Down Wit Dat - The Group is the Winner of Favorite Special-Needs Online Community!

Mornings are hard these days.

This little bit of sunshine in my email this morning melted a bit of the snow that's been piling up.

It's official!  Down Wit Dat - The Group (which includes our Facebook Page and Twitter feed) is the winner of's Reader's Choice Favorite Special-Needs Online Community for 2013!

I would like to thank everyone who voted tirelessly and without fail.  I would also like to thank the group itself, as it is your participation, supportive comments and advice that make it all possible.

You can see all the finalists and winners for all the categories here.   If you haven't yet said why you like our community, you can still do so here

Congratulations to all the Winners and Finalists! 

Tuesday, March 26, 2013


I think we were halfway through the post-surgical slide presentation when I noticed that it had started snowing.

It had been a long morning already in Toronto. We had woken up very early, gotten ready, bundled up all the kids--against what was very much winter here--and hit the highway by six. Traffic had not been bad for a change, which should tell you what leaving 10 minutes earlier can do for travel times in the T-Dot. We were on time, arriving at the hospital early for Wyatt's pre-op day. He had a flurry of tests in succession followed by a lengthy assessment. We had met with the intake nurse, the anesthesiologist, the CVS, the booker and two researchers. My husband was asking a question and I made the mistake of of looking out the window.


It fell in big, lazy flakes that took their time and appeared to not be in any kind of hurry to cover the gravel roof on which they fell.  Officially it was the first day of Spring, but here this was, trying it's casual best to remove any hope of warmth.  It obscured my vision and drowned out the voices in the room.  Instead of facts and images and the general din that is usually there, my mind was instead filled with a giant absence.

A silence.

Our stress levels had skyrocketed when, the day before, the surgery date had been changed. After several calls attempting to convince us to move the date, we were informed that the surgeon was no longer available April 3rd. I was more than a little upset; I had already moved around all the vacation time I had to make sure I was off for his hospital stay (and thereby not missing any income as well). Daycare, after care, meals, laundry, shopping, going to school... the planning of ALL THE THINGS had to be adjusted as well. His surgery date is now April 10th, one week later.  One week makes a world of difference to you when you do tours that are not based on a standard 7 day rotation.  Luckily, I work for very accommodating people. When I took that call however, I wasn't sure how feasible moving everything around would be.

Four a.m. comes very early when you stay up to midnight. It was still very dark and cold when we got Wyatt dressed and my other two bundled up, still in their jammies, to have a fun day at a friends house. We rolled into the lab just before 7:15 and Wyatt got to half-watch an episode of Max and Ruby on the TV until we were called in. I'll spare you the details, but let's just say that taking blood, a lot of blood, from a two year old is pretty much torture in their eyes. You can't explain things like CBCs, cross, types and matches to little ones. You just hope that you voice doesn't crack as you sing "Twinkle Twinkle Little Star" (and all it's permutations) quietly in his ear. You hope that the tears stay in where they belong as you hear him cry in X ray, as they put him in a device to keep him from moving--with his arms over his head--while overhearing the tech tell your husband "Well, he'd better get used to it! He's gonna have a LOT of these".

His ECG seemed to go a little more smoothly, at least at first.  Those stickers were sort of cold and all his attempts to grab at the fun strings were denied.  Eventually however, the indignities he had already endured that morning plus this new frustration made it impossible for him not to cry again. Our quiet singsong seemed to calm things a bit--as did playing with the nurse's name tag--and it was over in a few moments.

We were only in the waiting room a little while before our intake nurse came in and introduced herself. The assessment part was thorough and asked many questions regarding his overall health. She told us what the rest of the day would look like, who we would meet and what each member of our upcoming parade of experts would have to offer us. I was particularly interested in meeting with the researchers to see what studies they hoped to convince us to be in.

The first researcher was lovely and we chatted long after the interview was over. She was collecting data on hospital experiences, which included not only staff-patient (or parent) interactions, but also on the surgery itself, any outcomes, difficulties, side effects and the like. If involved, we would be in contact with her almost every day of Wyatt's hospital stay and after discharge until his post-surgical follow up appointment. It sounded a lot of fun to Sean, once he heard that we would be in the group that got to play with an Ipad for a week or so. For me it seemed to be a valuable way to communicate some of the difficulties I'd been having with organization and the like regarding Wyatt's surgery. Once she was done, our original nurse came back and suggested we go for a break for half an hour until the anesthesiologist was available to come talk to us. We welcomed the opportunity for a little break as Wyatt had gotten a little fussy and we trundled off in search of coffee.

The Atrium at Sick Kids Hospital is a wonderland of elevators, fountains and random whimsical statuary. We scored a table next to some eerie leaping bronze children and sat down to collect our thoughts. Wyatt noshed on a little banana bread and was content to take everything in, while Sean and I talked over what we had learned so far. Eager to get our day over with, we went back upstairs exactly 30 minutes later and parked ourselves in the waiting room. I must have nodded off as I sat there and I was jolted abruptly by Wyatt's name being called. I quickly gathered our things and we wheeled off to another room to meet the anesthesiologist.

Wyatt too had fallen asleep so his snoring was pretty obvious when the anesthesiologist arrived. We chatted about this and other issues; I was very relieved to find out that he would be given some gas and be asleep prior to any IV lines going in. He was a kindly man and although he wouldn't necessarily be our anesthesiologist, whoever was going to be would meet us the day of the surgery. He explained that Wyatt may or may not have his breathing tube or be on the ventilator when he returned from surgery to the CCU; it would depend on how he did afterwards.

The next researcher was from the Heart Centre Biobank Registry.  This Registry collects and stores samples (such as saliva, blood, skin and other tissues) from people with either congenital or acquired heart disease.  A related history is also obtained and related to the samples; these are used to research biological (including genetic/genomic) and environmental causes of heart disease. Tissue samples from the incision site, plus about 5 mm of blood would be donated and help in research. It was fascinating to listen to and I was really enjoying the information presented, when I felt my hands go cold. I rubbed them absentmindedly, trying to warm them up as she finished her talk and left the papers for us to sign.

The CVS (Cardiovascular Specialist) was next. He explained the length and breadth of the surgery. Again, it was riveting stuff, including how they would create two separate valves out of the one shared one and suture the clefts that were left. My hands had gone cold again. I listened to him talk about the heart/lung machine, the necessary transfusions, the apparatus involved, the incisions and the complications while keeping one eye attuned to my husband's every nuance of expression to assess his understanding of the situation. I had been fiddling with a pen and continued to do so as we listened to the complications of the surgery: infection, brain damage, organ failure...


My head was nodding in understanding but my stomach was uneasy. He presented scenario after scenario: there was even an instance where, if his heart had too much swelling, they would leave the incision open (but sealed with dressings) to allow for the needed room. Once the swelling had gone down, they would then close the incision. We signed the permission forms. Wyatt was still peacefully asleep in the stroller and we sat, in silence. I brushed the hair from his forehead noticing a slight tremor in my hand.

Our nurse returned to present a slide show about what to expect when Wyatt returned from surgery. She showed images of the (at least) two tubes that would be installed to drain any fluid from his chest cavity.  There were two internal pacing wires that would be connected to his heart in the event of heart block. There would be a central line (CVA), a femoral line, peripheral IVs, each providing a different function.  There was also the incision itself. From a nursing perspective, this was great information and a bit of a review. My hands however, had started to shake harder.  Sean asked something about visitors...


My head was a little swimmy and my eyelids were threatening to close.


I had reached saturation.

Wyatt slumbered on, oblivious to this, only occasionally sighing and shifting in his seat. He woke up near the end of the presentation and looked around to say "Crap, are we still here?". Our nurse disappeared for a few minutes and returned in the middle of Wyatt's diaper change to tell us that the surgeon would not be available until 3 o'clock as he was in surgery. She suggested that we get some lunch and explore for a bit and she would call me about that time. We had two hours to kill.

We went back downstairs and scored ourselves some lunch. We chatted, checked our phones and generally talked about anything other than what had just transpired. We explored the gift shop and eventually made our way back upstairs. I was hoping that the big TV in the waiting room would at least keep our wee boy occupied... and maybe, just maybe, I could close my eyes for a moment again.

It was 3:15 when our nurse came back to tell us two things. One the RSV nurse wanted to talk to us (re: RSV vaccination status) and two, the surgeon was not going to be available until after 6.

We were unable to wait any more.   I scrambled to find a few alternative dates that we could come down and meet the surgeon if he had additional information to give us. Other than possibly making a personal connection with him (as part of the process), I personally felt that it wasn't necessary to meet with him other than on the day of the surgery. Sean asked if there was a way that the surgeon could call us. We made arrangements, I left some dates for the booker, including April 3rd (as we are very much free that day). We were tired, overwhelmed, concerned for our now restless son and generally unhappy, a sentiment that was only compounded when the RSV nurse asked us if our son really had Down syndrome as "...he doesn't look like it. He must have a mild case. You're doing such a great job!" We were too far gone, too exhausted to correct her at that point. We just smiled and nodded like a couple of jerks and got the hell out of there as soon as she was finished her spiel.

Sean was noticeably rattled as he stomped through the freezing street on the way to the van.  I stumbled along behind him, pushing our enormous stroller and trying not to run people over as I squinted against snowflakes both real and figurative.  He was angry that the day had been so long and that the surgeon could not meet us. I understood why the surgeon wasn't there; he was across the street preforming magic on a little person that desperately needed it. I was comfortable with that, as was he once we had a chance to discuss it.  Still, it had been a very long and stressful day. 

We talked about all that had transpired on the trip home. Other than the one X ray tech and a "well meaning" (gah!) RSV nurse, we had absolutely nothing to say but good things about the clinical staff and the researchers. Where the whole experience fell down was the planning and organization. We are in that study however, so you can bet that we will be supplying quite a lot of data about both our surgical and in-hospital 'experiences'. We drifted through the rush hour traffic until Sean absentmindedly got off on the wrong exit and we ended up taking the scenic route home. Upon arrival, we were much calmer, although completely spent. My hands had even stopped shaking. I released Wyatt to have some play time and we sat down for a quiet moment before Sean went out again to collect our other two children.  The snow had stopped for a while and the sun was doing it's best to warm what was left of the day.  It felt good on my face.  I closed my eyes and breathed deeply.

It's a tricky thing, this weather.

“the snow doesn't give a soft white damn whom it touches.”

Monday, March 18, 2013

Make World Down Syndrome Day a Day of Action

Thursday is World Down Syndrome Day.  It is a day of celebration and of recognition.  It is also a day of global awareness.

Honestly, I've about had it with awareness.  I'm done, finished.  Most people are aware of Down syndrome by now.  They may not know exactly what is involved and may be very prejudicial as they base their opinions on outdated and incorrect information.  But, they know it exists.  Instead of having yet another day of awareness, I'd like to make World Down Syndrome Day one of remembrance and action.

Several things have weighed on me in the last little while.  The first is a doll, made by a mother of a 13 year old girl with Down syndrome.  They are called "Dolls for Downs" [spelled incorrectly].  The idea here is that "every child wants a doll that looks like themselves." 

I don't agree and furthermore, I am uncomfortable with these dolls in principle.

Firstly, I dislike anything that has the potential to perpetuate the stereotype that all people with Down syndrome look the same.  They don't.  My son looks like the rest of my kids;  an amalgam of mine and my husband's family.  He does not look like these dolls any more than any other child with DS that I know personally.  I find the description of "pudgy features" in the video to be extremely offensive.

Additionally, like the bald barbie debate for pediatric cancer patients, I'm going to take the stance that my son does not need this doll.  He does not need another feel good, "isn't that cute!", soft focus awareness campaign (which is what this doll will surely turn into).  He needs a medical profession who gives a damn.  He needs a society that is tolerant and accepting of neurodiversity. He needs an education system that will not decide his future based on bureaucracy and preconceived notions.  He does not need a doll whose proceeds line a private pocket, like most "awareness" paraphernalia does.

While I'm on the subject, people with Down syndrome are often under-treated and marginalized by the medical community.  Don't believe me?  The Special Olympics has the largest database of people with Intellectual Disability/Developmental Delay that there is and as it turns out, most of the athletes are lacking medical treatment of some description.  According to  the Special Olympics, 70% of athletes are overweight, 35% require vision care/new glasses, 30% have severe hearing impairment and 24% have untreated dental decay, just to name a few things.

I also cannot tell you how many stories I have heard of physicians and other medical staff dismissing a mother's concerns or simply shrugging something off as "it's to be expected".  There is the assumption too, that a person with DS is somehow a lesser human being and therefore not worthy of care (that would be, presumably, better spent on a "normal" person).  We need to stop denying surgeries and life enriching treatments to people with developmental delays.  We need to stop expecting the worst and completely disregarding people when we hear "Intellectual Disability" or "Developmental Delay".  We need to stop walking in with preconceptions and make accommodations on a person to person basis. It's not that hard, really.  However, I might as well be speaking ancient Greek to most people to whom I bring this up, as outdated, paternalistic practices run deep within medicine, our education systems and in the general public. 

Instead of chalking untreated symptoms/conditions up to "the suffering of Down syndrome", we need to call this what it really is:  neglect

I'm also done with "inspira-porn".  We see this stuff every day, especially in the vein of promoting awareness. Cute kid pics, fun sayings.  People with DS in the news, whether attending a prom with a (gasp!) "normal" person or doing things that everyone else aspires to do/does without thinking is not news.  I've recently had to take a hard look at what I am sharing on my Down Wit Dat Facebook page.  Who cares, if a star has a friend with Down syndrome?  Why is "your prom date with DS" news worthy?  We have to stop being satisfied with the "Down syndrome folk in the paper!" mentality and look at why we think this is significant.  Why are we perpetuating this?  Instead of being continuously starved for positive portrayal of people with Down syndrome, we need to change how things are done in the first place.  We need to create a world where this is all very commonplace and and no more worthy of airtime than anything else.  We need to stop sharing things that make us feel good initially, but have little impact on the world outside of the DS community itself.  Why is it only "feel good" stories of proms and basketball games and Academy Award nominees and dolls and similar things make the paper, but actual issues do not?  Stop with the inspira-porn, stop with the fluff.  It's a negative coping mechanism at best and selling our kids down the river at worst.

Alongside run the good intentions;  he or she may in fact "mean well", but they are not doing anyone any favors.  I know you "don't mean it that way" when you drop an R-bomb, but that does not mean I have to accept or even entertain the content of your speech when you are being a bigot.  There is an old saying that applies here:  "the road to hell is paved with good intentions".  Good intentions don't further any cause and in fact only serve to hinder ours.

I am still struggling with the death of Robert "Ethan" Saylor (captured excellently by atypicalson's post).  In the event that you are unfamiliar with the case--as it has not received the same level of airplay as say, a fun picture, prom story or a doll--Robert went to a screening of Zero Dark Thirty and enjoyed the film so much that he wanted to stay and watch it again.  Robert was (past tense) a man with Down syndrome who refused to get out of his seat after the movie ended.  His worker had reportedly gone to get the car.  When the theater staff were unsuccessful in convincing him to leave, they called in three off duty police officers who were moonlighting as plainclothes security at the mall next door.  By all accounts, Robert was a loving man who looked up to police officers.  Instead, what he got were three, authoritative looking men demanding that he leave.  The worker returned and tried to get to Robert's side to hopfully de-escalate the situation and was denied entry.  When he refused to leave and began to swear at them,  they threw Robert to the ground, face down, and handcuffed him.

Where he died.

Ethan died due to positional asphyxiation.  By all accounts, he coded on the floor right there and all three sets of linked cuffs were removed after the ambulance was called.  CPR was initiated, but he was later pronounced dead in the local hospital.  He died, this son, over a 12 dollar movie ticket.

I am tired of hearing "there is more training needed" in response to this story.  I know a lot of police officers.  They all know about positional asphyxiation, as does any psych nurse, any of the security guards that I have the honour of working with and any person who is trained to use any method of restraint.  I think officers everywhere should be outraged by this as well, as it puts them all in a bad light and perpetuates the stereotype of The Thug in Uniform.  I am sick of hearing "tragic accident" in reference to this story.

Let's call it what it really is:  homicide.

Ethan Saylor was killed by ignorance, by impatience and quite possibly by arrogance.  He was killed because they only saw 'Down syndrome' and they did not want to waste any more time on him.  He was not in a state of "excited delirium", he was not delusional.  Instead of taking a little extra time, the off-duty officers took the easy way out and took Ethan down.  I wonder how long it took them to notice he was in trouble.  I wonder how long it was before that knee came off the back of his neck.

The official party line of course is that "police officers don't get training to deal with Down syndrome".  That is, if you pardon the pun, a complete cop-out.  Officers get a lot of training, especially when it comes to de-escalation.  However, these three decided to go the other way in this instance and being very knowledgeable of exactly how much force they can use and get away with, they employed that method instead. 

Ethan died.  Over twelve lousy bucks.

It is of little comfort, but these three may not get away with it.  After days of deliberation, Ethan's death has been ruled a homicide.  After being allowed to return to regular duties for a few weeks, all three officers are now on administrative leave.  Even though they were employed privately as mall security guards at the time, they were still able to invoke their police privilege of not having to provide statements. 

I'm not hearing a lot of outrage when I come across discussion of this story and this upsets me even more.  I hear sadness and theory, not the white-hot anger it deserves.  I see my son, in a few years time, being stubborn like his mother and dying because of it.

We need outrage.

We need to change the system, to show that brutalizing and victimizing people with Down syndrome and other Intellectual Disabilities/Developmental delays is not acceptable.  People with DS are statistically at higher risk to be victims of assault and abuse.  It is completely inexcusable when this occurs at the hand of one (or two, or in this case three) who have sworn to Serve and Protect.

So this Thursday, on World Down Syndrome Day, instead of promoting awareness, I and others like me will instead be taking action.  We are asking no longer;  we are demanding.  Fairness.  Equality.  Inclusion. 


Take action.  Speak out against the violence perpetrated against those with ID/DD's including Down syndrome.  Speak out against outdated, paternalistic practices by both Medicine and Education.  Denounce stereotypes, the promotion of hatred and yes, even (and especially) the R-word. Remember Robert "Ethan" Saylor and all victims of violence, of discrimination and neglect.

We need action.  That's the type of awareness I want to promote this World Down Syndrome Day.  It seems a lot more important than wacky socks.

Thanks to all who voted for Down Wit Dat - The Group for Favorite Special-Needs Online Community!
Want to say something nice?  Tell why you like Down Wit Dat! 

This Blog Symposium brought to you by:

 photo DSUbannersmall2_zpsfa60ecbb.jpg

Add your WDSD post now! 

Saturday, March 9, 2013

The Cat in the Corner

With each moment, we draw closer to Wyatt's big day.  We use terms like "repair" and "procedure" and all sorts of sterile clinical things... but it doesn't change the fact that he is going to have open heart surgery.  In a handful of weeks, the day--that we have known about since his in-utero AVSD diagnosis at 30 weeks--will be here.  There is a wealth of emotion that I am trying to process; I would be lying if I said I was looking forward to this.   I haven't been myself, my sleep is interrupted (even more than usual) and I have been unable to write more than a few words.  There is no sense of impending doom, I don't want you to get that impression.  However, there is a tension in the room, a watchful waiting.  I can feel it there, sitting in the corner... with it's paws crossed and amber eyes gazing expectantly.  Only the barest twitch of tail announces it's existence, but it is there. Waiting.  Whether to pounce or settle to slumber, I cannot be sure.  But, it waits.  Patiently.

I have been going about my life in defiance of this new visitor.  Routine is maintained.  Groceries are bought, homework is done. Alarms are set, alarms go off.  The kids themselves are in good spirits and aside from another bug that has invaded our happy home (codename:  "Cough Until You Puke"), it is business as usual with them too.  They continue to grow and develop and surprise me at every opportunity.  Although I haven't given an update since before Wyatt and Zoe's birthday, all has been well with my three little minions.

Quinn continues to exhibit an intelligence that is very much beyond his years.  His easy grasp of complex concepts is only outdone by his sense of humour.  He was hit particularly hard this week by our newest virus, but has rallied just in time for March break.  His understanding of anatomy and physiology continues to astound me as he continues to ask questions that have me stopping to think.   Earlier this week, one of the fans on Down Syndrome Uprising posted a link to a nursing based page that had posted what they had supposed was an anatomical diagram of DS (which was more of a horrible caricature with misleading information).  As an added bonus, there was a caption encouraging 'shares' to bring awareness to "the devastating effects of Down's Syndrome" (spelled incorrectly).  The page itself smacks of "like farming", but the image was awful and many wrote to protest, including many that said they were nurses.  It was all a bit disheartening after a long day of actually being an RN and I was unaware that my eldest had seen the image until a voice spoke at my elbow.

"What is that, Mom?"

"It's an old diagram of Down syndrome" I told him, flatly.

"Really? That doesn't look like Wyatt.  What is all that stuff [in the middle]?"

I started to explain that the picture was trying to point out some of the things that could occur with Down syndrome and halfway through, he interrupted me;

"Why does it all look like that?  Why does the face look like that?"

I tried to explain that they tried to put a whole bunch of "symptoms" on one diagram.  He wasn't buying it.  His brow furrowed and he stopped me short with the following:

"But Wyatt only needs his heart fixed and then he will be better. That is not right. They should not say all that.  It's not right."

I gave him a huge hug as my eyes welled up.  My six year old can grasp in a few seconds what it is taking adults decades to get their head around.  Health teaching needs to be fair and balanced, not angled to be as grotesque as possible (or even worse, completely insubstantial).  That starts with teaching health practitioners correctly in the first place. He gets it and he's only six.  I can only imagine what else he is going to understand in the future. 

We try to find little things for us to do together, which doesn't always work out with our schedules.  Quinn and I have a project coming up that will hopefully sprout seedlings for our garden this year.  I can't tell you how much I am looking forward to this.  We're recycling Coke bottles for self watering planters, so it should be a fun little science experiment.  Botany, physics and ecology all in one lesson, what more could you ask for?  If all goes well, we'll get to (literally) eat the fruits of our labour later this summer.

Zoe just keeps getting funnier.  One of her latest endeavors is learning the 'spit take'.  She would take a long haul on her juice cup and then mist it out in a giant raspberry and laugh hysterically.  I thought it was funny the first time, until Wyatt started to imitate her a moment later.  They went back and forth in a flurry of 'thhhhppppttttthhh!' as they, the floor and everything around them slowly became soaked with juice.   It's happened a few times since then and I have to stop her as she starts up, or it becomes a spit take-one-upmanship contest that only ends when the ammo runs out.  She'll then declare the whole thing "AWEthome!" and move on to her next demolition project activity.

Wyatt's development continues to move forward in leaps and bounds.  He is wanting to stand at every convenience;  although he can't quite get there from a full sit, he can stand up from sitting on a stool and when placed in a standing position is quite content to stay there.  He loves this new view on the world a lot, actually.  If I'm on the floor he will crawl over and half crawl up my arm.  I'll help him up and he will causally look around and survey his kingdom.  More often than not however, he will lean in and put his head on my shoulder.  He'll often sigh in contentment and snuggle in even tighter, sharing this new thing with me, his feet firmly planted on the ground.

He had a Speech and Language assessment a week or two ago where we set have a whole new list of language goals.  He continues to sign and say "dada" and "dah-dee!" but Mama is still a no go (except for that one time...).  That is, until the speech therapist pointed out to me that he says "baba!" a lot and asked about his ears.  It's possible, if there is fluid in there (remember all that a few weeks ago?) that he cannot hear the "M" sound properly and is repeating it as "B".   If you watch yourself say both in the mirror, there really isn't much difference.  He has been saying Mama, in fact it's his most common word.  I just wasn't really hearing him.  He's still using his own sign for "parent" and he uses it for both of us.  Instead of touching his thumb and spread palm to his forehead (where he signs "Daddy"), he taps it on the top of his head.  We're continuing to work on "more" and "thank you" and a few more signs.  He can say "tah-doo!" when you hand him things, so he is already giving us his version of thanks.  They were impressed with his sudden leap in activity;  we just can't discount the effect that his VSD closing has had on his overall ability.

It may seem to the uninitiated that Wyatt cannot communicate well, as his words/signs are limited compared to say, his chatty twin.  I want to banish this notion completely as no one that meets him seems to have an issue understanding him.  The other day for example, he did something that was pretty remarkable.  We have a small dresser in the living room that holds things like wipes and diapers and movies and things.  Zoe has discovered the bottom two drawers and routinely likes to pick up toys/random objects and hide them in there.  Lately, Wyatt has emulated her, which has resulted in some pinched fingers here and there.  We were all in the living room and I turned around at the sound of Wyatt crying loudly;  he was holding up his hand for me to see.  I asked "What happened?" and still crying, reached behind him, placed his hand on the drawer, snatched it away like it was hot and cried louder.  He had perfectly mimed getting his hand caught in the drawer.  A quick assessment and a few kisses later, all was forgotten.  We've both learned a valuable lesson with this:  he, not to play with the drawer and I have been made more aware of just how good his communication really is.  His twin sister, who can talk, has done the same thing and cried so hysterically that she could not be understood for a few moments (and needed much calming down afterwards).  He on the other hand, quickly and efficiently conveyed what the problem was and went right back to playing after being comforted and validated.  Sha-ZAM!  That's m'boy.

It seems that Zoe is the latest one hit by Cough Until You Puke.  I was awoken groggily a few times by the sound of her coughing during the night, but it was Wyatt who brought it to our attention.  After a long hack session about 4am, I heard a telltale gag and immediately Wyatt started to cry.  I stumbled into their room to find a bewildered Zoe in a mess in her crib with Wyatt kneeling up against the rail of his crib, obviously distraught at the state of his sister.  I flicked the light on and started about the business of stripping her bed while Sean popped her in the tub.  Wyatt was pretty patient for a few minutes, as he sat with one eye open, but had obviously had enough as he eventually reached as far as he could to snap the light off before laying down again.  I laughed and went across the room to turn the lamp on, to which he groaned and sat up again, grumpily.  His language could not have been clearer if he had actually said "What the hell, guys?  I'm TIRED!" 

I guess it is time to finally drop his crib down as he can now open the door.  We are used to leaving their door open a crack, to help with air circulation and whatnot.  Sean got up very early one morning to use the washroom and in walking out of our room, noticed the door of their room open.  He thought "What the...?" and in walking towards to investigate, a little head popped up over the edge of the crib and squealed good morning.  We figure Wyatt was able to grasp the edge of the door and flung it wide, in the hopes of seeing one of us.  We started shutting the door at naptime that day, only to hear what sounded like the doorknob rattling shortly thereafter.  He is unable to get out or fall out of his crib still, but to be safe, I think it has to drop down a level.  That will be a big milestone for us, as he is definitely no longer a baby, instead he is very much a little boy.

Life goes forward, regardless of things like surgery dates.  Although April 3rd crouches in the corner over there, I am aware of it and regard it warily in my peripheral vision.  My concerns are not really based on the procedure itself, but rather all the planning and preparation involved and other intangible Mommy-like things.  It is comforting to know however, that when the fear starts to grow and loom in the shadows, I have many things that bring me comfort and stop it in its tracks.  My kids.  My goofy husband.  My friends, both online and IRL.  My colleagues (of all stripes) who banded together to let me know that they were supporting us with our upcoming journey and the individual ones that have approached me since to offer private words of encouragement.  With all of this I may just muster the courage to look it directly, maybe even extend a finger or two.  Maybe, if I remain still enough, a well placed pst-pst-pst can coax it out into the light.

 photo 2013finalist_zps64bf3e54.gif
  Don't forget to vote for Down Wit Dat - The Group as Favorite Special Needs Online Community!

Wednesday, March 6, 2013

End the Word

One year ago, I wrote a post that I wished I didn't have to write.  One year ago (exactly one year into being a parent of a child with Down syndrome) I wrote this post, explaining my position on "The R-Word" ("Retard" or "Retarded").

Since that time I have heard from many of you, both good and bad.  I have been thanked for my explanation and told "I had never considered that before".  I've also been told that this is "nitpicking" and "inconsequential" and "not important" and I am "wasting my time".

I will say now, that anything I do to try and make this world a better place for my kids, is never a waste of time. 

A full year later, here we are again.  Today is R-Word.Org's Spread the Word to End the Word Day of Action.  It's still a day that I wish I didn't have to happen.  This is yet another post that I wish I didn't have to write.

I'm not alone either.  Many bloggers have spoken out on the use of the R word, some of which will be linked to the blog hop below.  I've said it all before... I've talked about it's dehumanizing effects, I have mentioned how belittling this term is.  Yesterday, this post appeared in the Huffington Post.  Remember Amelia?  The R word almost killed her.

It is no longer a term suitable for medicine as both the DSM and the World Health Organization have seen fit to drop it from their next updates.  It is being written out of legislation.  The only place it really thrives these days is in every day parlance. I realize people fear change.  I realize that people feel like they are under attack each and every time I or anyone else, politely points out their use of this offensive word.


You should feel under attack as that is exactly what you are doing to thousands of Intellectually Disabled and Developmentally Delayed individuals.  This word, this word that you use to describe the silly little foibles in your day, has been used for hundreds of years to hurt, maim, demean and ultimately kill.

I've also heard from a few parents of children with special needs that they do not see their child as this word, that they do not let it define them.  I sincerely wish these parents well.  I also hope that their child's future potential employer and the registrar at their child's future college share this view.   Unfortunately the world-at-large does define our children by this word.  To some, they are useless eaters.  To others they are still easy targets for ridicule and abuse.  Then, the R word and by extension, those that are defined by it, are demeaned even further when used to describe life's trivial little problems.

I think John C. McGinley, put it best.  There is no tax.  There is no cost to disparaging a group of people that have done nothing to you.

Stretch your vocabulary.  Define yourself as a compassionate and caring individual, not an ignorant, abilist, archaic bigot.   Practice inclusion. Use person first language and offer respect to your fellow human beings.  The R word is not useful, nor accurate, nor funny.  Take the pledge to End the Word.

I hope one day I won't have to make these posts, that we will all live in a world with acceptance of neurodiversity.  More and more minds are opened every day, that is true.   More and more the language is changing; in our laws, in our texts, in our lives.  Like every other civil rights movement that has gone before, we are in this for the long haul.

With that in mind, I guess I'll see you next year...

 photo 625451_10151249421101157_509799039_n_zps5591372b.jpg 

This Blog Symposium brought to you by:

 photo DSUbannersmall2_zpsfa60ecbb.jpg
Add your R-Word post now! 

Friday, March 1, 2013

In the News - February 2013

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of activism, of inclusion, of advocacy, of education, of hope and of love.  These are from February.  It may have been a short month, but there was a lot in the news.

AUDIOindicates an audio clip
APPEAL indicates an online petition or plea
BLOG indicates a blog post
EVENT indicates a scheduled event
LINKS indicates links or resource materials
PHOTOS indicates photos
STUDY indicates a study
THREAD indicates an online discussion thread
VIDEO indicates a video

Ten Little Monkeys

Read more here:

Support flows for woman with Down syndrome mocked by radio DJ - See more at:
Support flows for woman with Down syndrome mocked by radio DJ
Support flows for woman with Down syndrome mocked by radio DJ - See more at:
Support flows for woman with Down syndrome mocked by radio DJ - See more at:
Support flows for woman with Down syndrome mocked by radio DJ - See more at:

Down's Syndrome dance group Dance For Joy to appear on Sky One’s Got to Dance competition

BLOG On the making of things –
Colasanti Craft Fair
Keep Calm T-Shirts
BLOGCelebrities Who Apologize For Using The Word Retard: Does It Do Any Good?

On rooting for nobody in the Superbowl

Sharing a Prenatal or Newborn Diagnosis
A Bare Naked Update: Downs Side Up Uncovered

World Down Syndrome Day

How To Change The World
When Bill met Shelley: No disability could keep them apart

A Very special story (for feeding tube awareness week)

A Game-Changing Treatment for ADHD
A Game Changing Treatment for ADHD
A Game-Changing Treatment for ADHD

10 Tips for dressing a sensory sensitive child










This month:

Down Wit Dat's Facebook page surpassed 1000 fans! Thanks to all that got the word out.  Welcome to all our new friends.

Down Wit Dat - The Group , our all inclusive special needs group (along with our Facebook Page and Twitter feed) have been chosen as finalists in's Readers Choice:  Favorite Special Needs Online Community!  You can vote for us every day, once a day (from an email address or Facebook sign in) through March 19th! 

Fairytales, my post from July of last year, has been nominated for Best International Post from the SWANs. 

Down Wit Dat has also been selected as a finalist in Wego Health's Health Activist:  Best Kept Secret 2012

Also, don't forget to check out a new page that I'm involved in: Down syndrome Uprising. Let's Talk!

...And that's the news.  Keep the stories and information coming! 
Related Posts Plugin for WordPress, Blogger...