Wednesday, June 26, 2013

Driven to Distraction

I've been trying to write a post, while I'm off, for the last 5 days.  I've started two really good ideas, one meh idea and this one... and I keep getting distracted.  Not by one thing in particular, but derailed by all the things.  I have a bunny in my backyard.  I hate the way the racoons keep digging up my garden.  The kids are rioting.  There is a fly in here.  The living room is a mess.  Phone?  Whar?

It's raining!
It's sunny!
It's hot! 
Bunneh!

Ugh.

I guess on paper my reasons are as good as any:  full time job, that job is hard, I have three kids, twins, a kid with special needs, I work shift work, I never sleep, I'm always tired.  The reality is a lot simpler: I'm not doing a lot right now as I am off.  OFF, I tells ya!

See, this is what people are supposed do when they are at home and not working.  They rest.  They catch up on hobbies and connect with friends.  They read and watch TV.  You can do things with the kids, whether formally organized or not, or just hang out.  Leave it to me to assume that this is some new pathology, most likely brought on by caffeine withdrawal.  But, it's not.  It's more likely that this is what happens when I don't have things looming over my head.  It's been a long time since that has occurred.

It's been refreshing frankly (and I seem to have gotten just as much done).  I'm not stressed out for a change, which is good.  In between random observations, life has gone on as it always does.

My first day off (after my last night shift) is traditionally my "silly day" as I don't sleep until the kids go down for their afternoon nap.  Usually I pick this day for all of us to go shopping, which generally gives my husband an eye twitch that lasts him a good few days.  This past week it fell on Friday, which is a great day to get groceries before the store is mobbed for the rest of the weekend.  It's also a good day to do any errands that you want to do.  This week, on a whim, I actually wanted to visit a bookstore.  That may sound like an innocuous request, but I usually don't have time to go.  I barely have time to read;  when I do,  I order books online or have Sean pick them up for me. This time, I had worked!  I had been paid! By gawd I was going into a bookstore!

Ever seen The Sound of Music?  As I walked through the front door and the first vapours of "book smell" mingled with burnt coffee hit me, I was Julie Andrews.
The hills are aliiiive, with the sounds of rea-ding...
Dramatic?  Yes.  But totally on point.

I miss puttering through books like this... I always end up buying way too much; at least I recognize that I'm still a book addict and that I can't own all of them.  As we went to the children's section and Zoe began to act out, I realized something else:

We have started the "terrible twos".
With two of them.
I have two children in the terrible twos.

We were busy feeling for looking for Lego Mini-figs for Quinn, when she started thrashing in the stroller and screaming "Help me MAMA!  HELP MEEEE!" while leaning as far out of the stroller as her harness would allow.  I could feel every eye in the store on us as I casually addressed my daughters pleas for release.  Without looking, I could also tell that husband's eye twitch was worse.  His voice was a little more taut than usual when he expressed how glad he was for me to be there "this time" as other times people have looked at him like he was a kidnapper.

*facepalm*

We continued on with our mission.  Right on cue, Wyatt started up, leaning out of the stroller the other way (possibly for balance).  He howled whilst simultaneously chewing on his finger to indicate to us that his incoming tooth was the source of his discomfort.  With now two children kicking and wailing, one of which needing Tylenol, we had to go. 

As I loaded our finds on the counter, the cashier asked "Going on a trip"?

*blink*

Maybe it was my two wailing kids in the background but for the life of me I couldn't figure out what he was saying.  Trip?  Where? With this lot? Was he mad?  Had he any idea what was involved in such a thing? Did he not know?

After an awkward pause, during which I stared at him and wrestled with the word shapes he had presented me, I dropped my eyes and answered "no" very quietly.

"Awahh" he answered (or something similar) and having paid for my new treasure, we left the store, the kids still freaking out.  They were fine once they were buckled into the Whaaambulance and we were able to complete our shopping with a minimal amount of shouting.

The raging.  The throwing of things.  The screaming.  We went to friends' house for dinner on Saturday;  they have two lovely, well trained (and child accustomed) Vizslas.  Sadly, two out of my three children would start screaming and shaking--seemingly with rage--every time one of the dogs approached for a friendly lick or sniff.  The twins would alternate ear piercing screams at random intervals.  It wasn't out of fear after the first few encounters; as time went on it just became their stock answer to a doggie approach.  It's no wonder the wine evaporated at an alarming rate.   There is hope for everybody tho' as Wyatt reached out to pet one of the pups;  however, the sniff he got in response set off another round of Baby Hulking.  Another day, I guess...

There are some side benefits to this stage.  Wyatt is now officially in the 95th percentile for weight. You can actually see by the increase in muscle mass since his surgery.  His weight will drop dramatically as he learns to walk;  that isn't that far in the future I don't think, as he managed to slowly cruise most of the length of the couch yesterday.  Our pediatrician was so impressed by both of them last week that she didn't want to see Zoe for 6 months and Wyatt for three.  He has a fabulous pincer grasp and point... even if he is only using it to turn the TV/VCR/DVD off.  And on.  And off... 

Zoe, our youngest and most loud precious, seems to require some sort of gymnastics training or her own crime-fighting circuit.  I can feel the hairs turn grey now as I remove her from the back of the couch, the bookcases, the chairs.  She is a thrill-seeker with a temper.  She also loves to play with both of her brothers, which makes my heart smile.  She is delighted to play "blocks" (Duplo) with Quinn...and anything else she can think of, but she will also take time to sit on the floor and roll a ball to her twin (despite fighting over everything else).  They rolled a ball back and forth--with very little intervention from us--one night for over 20 minutes.  She also makes sure that he gets his snack or drink first.  "Here Why-ATT", she'll say, handing him "Why-ATT's nana" (banana) or "Why-ATT's cookie".  Although I love all my kids equally, this one is my girl.  My colleagues at work are in agreement that she is Karma's way of repaying me for, well, me, but as she stops mid-gallop to bed at night and whirls around to say "Goodnight mama" and give me a kiss (and honk my nose), I think I'll let them believe what ever they like.

Distracted.  I am soooo distracted.  How can I not be?  There is always so much to process.  There is always so much to learn and experience.  Quinn is finishing Grade 1 this week.  We have to figure out his camp schedule and discuss what we can do to socialize the twins more. After now, I won't surface and see my family except in brief flashes until Sunday morning.  I will write that post on Abilism and continue my Brief History... series at some point.  Until then, as you can well imagine, Te...

BUNNEH!

Wednesday, June 12, 2013

Don't be a Dick*

Being a bit of a geek, it shouldn't be surprising that I adhere to Wheaton's Law.  For those that aren't familiar with this little bit of memedom, Wil Wheaton (of Star Trek: TNG fame) in his keynote speech at the Penny Arcade Expo (PAX) in 2007, stressed the importance of sportsmanship, in this case referring to online gaming.  It culminated into one phrase: "don't be a dick".  Not surprisingly, this little idiom has taken on a life of it's own;  Wil's Birthday, July 29, is now "Don't be a Dick Day".  It's premise is pretty simple;  don't be a dick.  In the last little while, quite a few things have come across my path that have me saying "what a dick!" and wishing that people would start applying Wheaton's Law to and in the disability community.

Wheaton's Law.  There are shirts.
For example, service animals are becoming more common and being used for many different things these days.  However, you would be surprised at the amount of discrimination that still occurs.  This story happened a few years ago in Toronto, where a medal winning athlete was denied entry into a gas station due to her seeing-eye dog.   Not all service dogs are German Shepherds or Labrador retrievers or even seeing-eye dogs for that matter;  my friend M. has a service dog, a darling pile of fluff named Edgar.  He is a miniature Yorkshire terrier and helps her with her symptoms of Post Traumatic Stress Disorder.  Edgar is fully certified and although he doesn't wear a vest (he is too small), M. carries all his certification with her everywhere that they go.

The other day, she went into a nail salon/spa that she had frequented for years.  While lying quietly on a table for a facial treatment, she was accosted by a very hostile and threatening woman.  The woman bent down to speak to M. face to face and loudly objected to Edgar's presence stating that he "would get the place shut down by the health department".  My friend, once she had regained her composure (and been able to stave off symptoms, thanks to Edgar's intervention), attempted to explain her service dog's role to the woman, even going so far as to pull out his documentation. M attempted to show his certification again a few minutes later and was greeted with more ignorance, conversation bordering on verbal abuse and most sad of all, silence from the shop's owners.

My friend will never go there again.  What was once a place of peace, comfort and happy memories for her and her daughters is no longer "safe" (for her or Edgar).  It pains me to hear this as this is not the first time that this has happened to her.  This year even.  M. has been humiliated by people demanding to know her reason for her PTSD and what service Edgar could possibly provide.  My friend is not about to discuss the horrific physical, mental and sexual abuse that she endured at the hands of her own parents, especially to complete strangers. Yet, people feel they have the right to ask this of her, despite the documentation.

So, when it comes to service animals, don't be a dick.  Not every service animal is a large dog or even a dog, for that matter (I have seen pot bellied pigs and small horses as well).  You do not have the right to demand an explanation other than the animal's certification.  You also don't get to pass judgement on what you believe is a proper application of such an animal.  Not every disability is visible as well;  what may not be apparent to you may be quite debilitating to another.

I don't consider myself to be a "mommy blogger" (although I do know quite a few successful ones).  I'm not confident enough to consider myself a writer, so I tend to refer to myself as just a blogger.  Before the twins, I was was happy to prattle on about my garden and random things that popped up in my life [read:  a forum to entertain my family and friends and show my photography]. That changed with Wyatt's prenatal diagnosis and the writing that came out of that which would eventually became Down Wit Dat.  As I found out new things, I shared them with my family and friends.  That group has grown over time;  I've never claimed to be an expert.  I'm just another advocate (and not a "mommy advocate" either).

In my travels, I talk to a lot of other bloggers.  Some are very successful, some are commercial and do this for money or promotion, some blog for advocacy and some just do it for a love of writing.  There's a degree of camaraderie, sure, but at least in the "disability communities", there is a lot of animosity as well.  We all have a voice, we all have struggles.  We all have learning needs and different personalities and let's face it, I for one am not everyone's cup of tea.  However, there's this trend to discourage and disparage "younger" (less experienced, with younger aged children) bloggers and advocates and it's kinda disturbing.  I'm hearing "too angry" and "too young" and "too inexperienced" and "too disrespectful" and a whole other bunch of wacky stuff.  I can't speak for anyone other than myself, but "too angry"  is not exactly what is happening over here at the Logan Homestead.  Even when I'm being particularly passionate about something, I'm hardly angry to the point of uncontrollably shaking my fist to the sky (I have been accused of that one, actually). I don't have the energy for that level of unbridled emotion, frankly.

Besides, I'm Canadian.  We don't do a lot of that here.  We're more apt to write a polite letter to our riding's Member of Parliament, to ask them to consider submitting a well thought out and sober article of legislation.  When it comes to the blogosphere, we all have something to offer, even if we all don't agree.  I for one, want to hear the experiences of those that have gone before.  I want to hear what went right and what went wrong.  Not so that I can tell you that I think you did things incorrectly, but so that I can learn from it and make my son's experience better (and improve it even more for the kids that come after him). 

So, bloggers ("Mommy" or otherwise), don't be dicks.  Personal struggle is not a contest.  No one wins in the end for time served. There is no "rank", this is not the military.  I may not know exactly what year 15 looks like with a child with DS, but I do know what I want it to look like.  You probably don't know what it is like with twins where only one of them has DS, either... just as I don't know what it is like to be an adoptive parent or a same-sex parent or any other kind of parent other than myself.  We're all trying to make a world that accepts those that are different than most as a matter of course.  When we waste our energy on each other needlessly, we just look like, well, a bunch of dicks.

My last stop on this "Don't be a dick" train is person first language.  I was a big believer in PFL since I encountered it in 1995 in one of my nursing classes.  It's not rocket science:  people are more than their conditions.  Mr Smith may have schizophrenia but he is more than simply "a schizophrenic".  Such reference is dehumanizing.  Calling my son a "Downs" or "Downy" or any other permutation, other than "he has Down syndrome" is dehumanizing.  

The exception to this lies with the self advocate.  Through the words of a few bloggers in the autism community that I respect greatly, I have gained an understanding into the continued use of "autistic" as opposed to "person with autism".  As it was explained to me, by a person who is autistic, it wires a person different;  to remove the processing disorder would remove a great part of the self.  Although I probably would have disagreed in theory, I respect their opinion and through them I have gained insight.  Those possessing the characteristics in question get to determine the language used to describe those characteristics.

Comparing Down syndrome to ASD is like comparing apples and pelicans anyway. 

The current consensus of the self advocates in the Down syndrome community is to use person first language and it is to that I will defer.  So please, don't be a dick.  Down syndrome is not an adjective.  The words you choose to describe people shape the perceptions of those around you.  We cannot create a world where differences are accepted and even celebrated if we denigrate people through the words we use to describe them.  It's not a matter of your "rights" to "free speech", it's a matter of recognizing another's humanity.

So there you have it.  When it comes to the world of "disability", invoke Wheaton's Law.  Don't be a dick.  Make every day "don't be a dick day".

Speaking as a someone who loves someone with a learning disorder, we already have enough of that to deal with.

------
*Unless your name is Richard.

Tuesday, June 4, 2013

Without Love

I'm an 80's girl.  It's true.  It's not so much the Cyndi Lauper Girls Just Wanna Have Fun vibe (although I did own that album), but later 80's.  I'm a rocker from way back, always have been, always will be.  In that time was a lot of hair if you know what I mean...  A lot of glam and sparkly-spangly-tassly stuff.  I have a lot of punk and metal in my play list, but there is still a special place in my heart for sappy 80's ballads.  The lyrics aren't known for their depth or overall social consciousness, the musicality not particularly stellar beyond thumping drums and shredding guitars, but hey, at least they all sang their own songs and actually played instruments.  My husband just rolls his eyes at me, but I always find myself reaching for this genre when I'm needed a little pick me up.  Back in those days, everything was on tape and I wore a LOT of them out, playing them over and over on my Sony Walkman.  One favourite was Bon Jovi's Slippery When Wet; I must have got it for Christmas one year, but I played that thing to death.  The other day, while trying to psych myself up to go to work, I found the album again on YouTube.  I was amazed at how many lyrics I could still remember over *cough* years later, but also at the songs that I had totally forgotten about.  One of them, Without Love, has been stuck in my head for a week now.  I started my day with a smile on my face and I totally blame this song.  It's not their best by far;  it just seemed to have a lot more meaning to me that moment, in this stage of life, as I buzzed myself through a succession of locked doors, with a spring in my step that can only belong to the fifteen year old girl that I was then.  This was before my beloved Guns and Roses, before I developed my love for Pink Floyd.  Then, it was all about the hair and the romance.  As I raked my own unruly mane into a quick ponytail before report, I reflected on how different I viewed the lyrics now.  How at this mid-stage of life, with Team Logan, with my patient population, how a little album-filling ditty about love could ring so true at that moment.

All giggles
In this last little time of soul searching, I've watched my family grow and become more of the people that they will be. Wyatt has overcome his surgery and then some.  As I've mentioned before, he's learned to scoot across the floor which is a surprisingly efficient and FAST way to get anywhere.  He's also recently mastered standing up again, at least in his crib, which means his chest muscles are healed to a certain extent.  We can start getting him to stand up at the table and play which will strengthen his leg muscles and set him back on the road to walking.  You can tell that he has lost some mass in his quadriceps and gastrocnemius muscles since the second week in April.  He seems to have regained much of his signs and added a few more (although, still steadfastly refuses to use "Mama" beyond that one time). It is phenomenal to compare the pre-surgical boy to the post surgical boy.  He mimics everything around him and is now associating symbols and actions to certain things.  We have a show here called Four Square and he loves all the different segments.  He really likes the dance portion;  he gets to watch his sister act out all the motions and then afterwards drums on his tummy like the dancers do.  Instead of clapping when he sees the program come on, he now drums on his tummy.  "Formidable!" we say, just like Bianca and he laughs for what seems like forever.  We've also found that the fastest way to get his attention is to start the Beat Team's 'High Four!'.  I'd probably have some success with the "Ticka-Ticka..." opening number, but let's face it, I'm not that co-ordinated. 

He looks like a teenager for heaven's sake!
Quinn is currently sporting a bunny grin with the loss of both upper lateral incisors.  After a very long set of nights, I was squinting at him Monday afternoon, trying to figure out what was different (as he had only lost the right one the last time I had seen him).  "Hey!  I said, the neurons finally firing, "you've lost your other tooth!" "Yep!" he grinned at me "I lost it last night!"  I expressed concern that he had swallowed it, but he held a hand up to alleviate my fears and expressed the following:

"We-ell...
I woke up at 4:37 as I had to go the bathroom.  I knew I was going back to bed as it was really, really early.  I went to the bathroom and on the way back to my room I wiggled it once, I wiggled it twice and the tooth came out!  So, I went back to the bathroom, I took care of the bleeding, I put the tooth in the box for the tooth fairy and went back to bed."

"Wow", I answered him, a little taken aback by the bleeding part.  I mean after all, I'm supposed to take care of all that stuff, aren't I?  And where the hell was I?  Looking after strangers... Being overtired does odd things to your head and I probably would have continued on with this Mommy guilt trip if the other half of my psyche hadn't given me a mental slap and left me awash in a wave of pride for my boy and his new found level of independence.  Six months ago a nosebleed sent him into hysterics that caused him to run blindly in a panic and make half my house look like a murder scene.  Now, a tooth falls out at 4:30 in the morning and he's all "Pee.  Tooth?  Bed."  It's amazing, scary, heartwrenching and wonderful all at once.  He's growing up.  You don't know how to be sad and happy at the same time until you become a Mom.  I gave my big boy a snuggle and a squeeze for being such a champ about it and wondered how long it will be until he's all "awww MAWWM!" when I try to do the same thing in the future.

I have my rock, I can gardens...
Little Miss Zoe is very much Miss Thang these days.  Loud and defiant and hilarious and snorgleable all mixed up into one.  Her latest favourite game is to come up to you with a cup (or a bowl or a block or any sort of object with a concave side) and slap it to my mouth and say "JUICE, Mama!" and try and feed me.  She won't stop until you make slurping noises that end in "aaaaahhh!" and then she gallops off to her next victim in a fit of giggles.  It's cute, but also a little unsettling to have one eye open in the morning and have a bowl suddenly clapped over your nose and mouth while all you hear is maniacal giggling, no matter how cute.

Aside from the mock-chloroformings, her games are usually pretty cool and complex.  She's also more of a fan of Thomas the Tank Engine than Four Square, but she has slowly been won over by Super Grover.  This is how I know SG2.0 is on every day:

VOA: He observes...
Super Grover 2.0: " Oh look, what? AAAAAHHHHHH!"

Zoe: "Hawaaa Boo Bear!!!"
VOA: "He questions...."
SG2.0: "Haba-whaaaa?"

Z: "HABA-WHAAAAAAAAA!!"
VOA: " He investigates..."
SG2.0: "What does this button do?" (presses button, flies out of car with a scream)

Z: (screams at the top of her lungs) "AAAAAAHHHHHHHHHHH!!!"
VOA: " Super Grover, 2.0. He shows up."
Z: "YAAAAAYYYYYYY!"

These are the things that make my heart hurt, just a little.

We had a new Father post to DSU a week or so ago asking how he could be the best Dad to his new little baby.  I answered him as truthfully as I could:  You love him. You learn all you can and you give him all the love and support you can.  Just like you would with any child.  It is really that simple.  I am not the end all or be all of parental advice.  No one is.  What I do know is that loving your child, any child, makes the difference.  Being there for them, being involved in their lives, listening to their "voice", doing what is best for all of you is how you become better at this parenting gig.

I am not the best parent, not by a long shot.  My job requires that I lead an almost double life and I tend to drop out of the kids lives for a week at a time.  The week that I am home however, we try and make up for it.  There are plenty of cuddles, plenty of smiles, plenty of giggles and silliness to go around.  Buckets are hats, blocks are play dishes, fart noises abound and shoes are for suckahs.  My kids make it possible for me to do what I do and stay sane and my job makes it possible to provide for my family.  Keeping that pendulum in the centre is a giant forcefield:  one completely generated by the love of my little family.

So now, as I amble about in my forty-second year (and very much act like a twenty-something), I reflect on how little things like those lyrics have changed for me over time.  I do not fear our future.  I am not regretful or feel that I have some how been slighted or missed out.  We're just us, Team Logan.  Life is unpredictable and inconvenient at times, a fact that will be very evident tomorrow as my family goes shopping for a new fridge.  However necessary it might be however, it's a thing.  Ultimately, it's not important.  What is important are lost teeth and bumps on the head that need kisses.  It's growing with my children and helping them leave a world that is better than we found it.  None of that would be possible without our love for each other.

"Nothing would be nothing without love..."

Whoa-oh-oh-ohhhhhhhhh!  \m/

Saturday, June 1, 2013

In the News - May 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 awareness.  Every day advocacy was a theme this month, as were reflections on motherhood.


Legend:
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 or discovery
THREAD indicates an online discussion thread
VIDEO indicates a video

EVENT
Down Syndrome Uprising's Advocacy Blog Symposium

Read more here: http://www.islandpacket.com/2012/12/01/2295922/beaufort-teen-with-down-syndrome.html#storylink=cpy

Support flows for woman with Down syndrome mocked by radio DJ - See more at: http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf
Killed by the law, and no one protests
Support flows for woman with Down syndrome mocked by radio DJ - See more at: http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf
Support flows for woman with Down syndrome mocked by radio DJ - See more at: http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf
Support flows for woman with Down syndrome mocked by radio DJ - See more at: http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf
BLOG
BLOG

Stop mocking Adam Holland
BLOG
In the News - April 2013
BLOG
Getting over your fears

Experts: $240M judgment for disabled men 'stunning'

BLOG
Advocacy: small moments at a time

BLOG
BLOG
BLOG
My brain is busy
BLOG
BLOG

BLOG
BLOG
BLOG

BLOG
World Down Syndrome Awareness Day~ Advocacy in Real Life
APPEAL
BLOG
Being a Down syndrome advocate is a way of life.
BLOG
BLOG
We the Parents –
BLOG
End the Word
BLOG
APPEAL
BLOG
BLOG
BLOG
BLOG
BLOG
BLOG
BLOG
BLOG
BLOG
A Game-Changing Treatment for ADHD
Motherhood: Now and Zen
A Game-Changing Treatment for ADHD
BLOG
BLOG
BLOG
BLOG
On Motherhood
BLOG
On Mother's Day
BLOG
BLOG
Today I Lived and You Did Too


VIDEO
BLOG

Dad aims to change views of Down syndrome in new book


BLOG
BLOG

BLOG
BLOG

BLOG
VIDEO
BLOG


BLOG
APPEAL
BLOG
BLOG

BLOG

BLOG


VIDEO



BLOG


When the conversation about diversity doesn’t include disabilities
BLOG
BLOG

BLOG


BLOG
BLOG


VIDEO

LINKS
BLOG

STUDY

STUDY

VIDEO
EVENT

This month:

May has been a very busy month!  It saw the creation of our home on Tumblr:

Downwitdat.tumblr.com

The creation of a Facebook Interests List:


The addition of some new friends on our Facebook page, Group and Twitter:

 
...And that's the news.  Keep the stories and information coming!