Is there really as much drama going on as I like to report? With TDQ gone to camp for 3 days now I can actually see the trees in the forest. It’s a different dynamic when there’s only 2 out of 3 in the house (don’t be sad, two outta three ain’t bad, thank you Marvin Lee Aday)....sorry, got Meatloaf on the brain today.
Two thoughts: Life with TDQ can be like walking on eggshells. Crunchy, and tastes like chicken... Life with TDQ is also full of play acting her favourite sad songs (how very 15) and music videos. Demi Lovato, you’ve got a lot to answer for with that freaking 'Don’t Forget' vid. Srsly.
So – the eggshells. Why? Well, TDQ likes routine. On occasion she can be remarkably adaptable but I’m pretty sure that’s because she’s build on a foundation of routine and sameness. The world is a scary place for any teenager but through the lens of a developmental disability it must be even more confusing. Especially when you think you’re doin’ it right but the world tells you that you’ve got it wrong. Just because of who you are. I can’t really know for sure but I think of times when TDQ has been in new social situations and has done everything right and still gets the blank stare of death.
She took a dance class last winter and I remember distinctly an interaction with a pair of teenage girls who she had sat with outside the class a couple of times when we were (shock) early. That particular night she plonked herself down in an armchair a completely appropriate distance away, and after the expected “hihowareyou” sighed and said to the girls (with perfect articulation) “I got detention today, gonna miss lunch for a week”. Instead of ‘WTF’ or ‘that sucks’ she got the stares. She may as well have been speaking ancient Greek. Srsly, Mama was ready for a smackdown. If I wasn’t there I might have assumed that she got the social dance wrong, missed something, was off base on who she was talking to but no shiz, she was right on. Boo to those girls. But I digress... back to the eggshells.
Eggshells....It’s much easier to know how to behave when one knows what to expect. It’s a lesson that I didn’t have to teach TDQ, she gets it. Sameness = comfort. Lunch at lunchtime. TV shows at the same time. Gymnastics at gym time. Soccer at soccer time. Beginning of the week always generates questions about what we will be doing each day of the upcoming week. Frequent time checks, just to make sure that things will happen as she is expecting them to. It’s easy to be impatient or wish that we could change it up a little but I need to adjust my thinking and get in the groove along with TDQ.
Eggshells.... I will also ‘fess up to a degree of playmaking. Thanks Wiki for confirming that a playmaker is a player who controls the flow of the team's offensive play (what did I do before wiki?). Unknown to TDQ I’m often behind the scenes, setting up the play and making sure that she shines. Shuh, what’s wrong with putting her hippest t-shirt on top of the pile so that she automatically grabs it then tells everyone that she picks her own clothes? And secretly tossing those shorts-that-give-a-front-bum-wedgie even though they are her favourites?
Eggshells.... Yup, I give in to her sometimes because it’s easier to cave than stand my ground. Find me a parent that hasn’t and I’ll sell you a bridge in Brooklyn.
But here’s the thing about eggshells... sometimes they don’t break. And if you’ve ever done the science experiment of putting your entire hand (entire, mind you, no pokey fingers) you can squeeze that egg with all of your strength and it won’t break. Nature’s perfect design. While our journey together is sometimes a little crunchy, it’s also strong, smooth and perfect. The world might not see it that way but doesn’t mean it isn’t so.
I’ll talk about sad songs another day. Off to buy mascara so TDQ can have it running down her cheeks like Demi.
Thursday, August 4, 2011
Tuesday, August 2, 2011
Move Over, Taylor
TDQ is at camp this week so a lesser level of drama in our house this week. Miss that girl like crazy, tho.
Last week she informed me (and we have had many many conversations around this) that she wanted to sign up to be a singer. A famous singer, naturally. Girl has aspirations. We have been watching the meteoric rise of a girl from London Ontario called “Saveria” (I’m guessing that the girl’s parents couldn’t decide between Savannah and Maria so did a funky mashup, hehe) who is truly the girl next door gone famous, blowing away all of my sensible and reasoned advice that only kids from California can get famous. Don’t even mention the Beeb, K?
Singing has been one persistent goal for TDQ. I still remember watching Grade 8 graduation with each student getting a good 30 seconds of air time – what high school they were going to, achievements and awards from the past year and future career aspirations. Could have knocked me down with a feather when TDQ’s goal in life was to become a singer.
So I will be emailing this week to inquire about singing lessons with a local dance & music studio that has proven to be both warm and welcoming. My inquiry will go something like:
• 100% tone deaf
• Absolutely no sense of rhythm
• Musical instrument experience - a few months of recorder in Grade 7
• Vocal range of approximately 3 notes, most of them gruff
• Wants to reach Billboard Top 10 and kick Taylor Swift’s ass by end of term
How much will this cost me?
Questions bouncing around in my mind today – how to provide a nurturing, supportive environment for all of my children while simultaneously (metaphorically) beating them down to the harsh realities of life? Nope, no drama here this week.
Last week she informed me (and we have had many many conversations around this) that she wanted to sign up to be a singer. A famous singer, naturally. Girl has aspirations. We have been watching the meteoric rise of a girl from London Ontario called “Saveria” (I’m guessing that the girl’s parents couldn’t decide between Savannah and Maria so did a funky mashup, hehe) who is truly the girl next door gone famous, blowing away all of my sensible and reasoned advice that only kids from California can get famous. Don’t even mention the Beeb, K?
Singing has been one persistent goal for TDQ. I still remember watching Grade 8 graduation with each student getting a good 30 seconds of air time – what high school they were going to, achievements and awards from the past year and future career aspirations. Could have knocked me down with a feather when TDQ’s goal in life was to become a singer.
So I will be emailing this week to inquire about singing lessons with a local dance & music studio that has proven to be both warm and welcoming. My inquiry will go something like:
• 100% tone deaf
• Absolutely no sense of rhythm
• Musical instrument experience - a few months of recorder in Grade 7
• Vocal range of approximately 3 notes, most of them gruff
• Wants to reach Billboard Top 10 and kick Taylor Swift’s ass by end of term
How much will this cost me?
Questions bouncing around in my mind today – how to provide a nurturing, supportive environment for all of my children while simultaneously (metaphorically) beating them down to the harsh realities of life? Nope, no drama here this week.
Thursday, July 28, 2011
Stalker
It’s confirmed, I’m a stalker. Slap me in handcuffs and drag me away. So help me G*d, I couldn’t help it. No it’s not The Hand that Rocks the Cradle, but a little guy called Noah who has parents that would put all of us to shame. Srsly, they put the ‘Pro’ in Pro-fessional as far as workin’ this kid with early intervention, therapies and loads of good old fashioned luuuuuuurve. Noah is one seriously lucky dude and will no doubt do well in life.
Noah’s Dad states “There has never been a better time for a baby to be born with Down syndrome”. Agreed. 100%. Medical technology, social acceptance, early intervention programs, informed doctors, you name it.
But from high on my horse as mother of TDQ, would I go back there? Hell, no! Here's why....
Big plans last Monday involved meeting at 4:00 pm (Me from work ... Dad, TDQ & Firecracker from a day of swimming lessons, lunching and library ... Golden Boy from a full-on day at soccer camp) to celebrate Dad’s birthday with bowling, half-price pizza and cake (so I forgot the cake and had to stop off at the grocery store. Sue me.) As any parent knows, going from a busy day to an action-packed evening = recipe for disaster and my trusty children proved to be no exception to this rule. Hot, tired, whiny, me-me-me-me-me-me-me-me-me.
Zoom in to the scene at about 4:45 p.m. Cue music of shower scene from Psycho.
GoldenBoy is moping around because he can’t get a strike and the Firecracker (7 years younger) is beating his score. Oh boy. Firecracker herself is frenzied, wild-eyed from hours in the pool and the lights and noise of the arcade that the bowling alley just had to install to torment parents.
What was TDQ doing? Bless her heart, she was sitting on the bench seat like an angel, waiting her turn. Get up, bowl, politely cheer for self, sit down. Albeit, rolling her eyes and making the odd snarky comment about children who behave poorly in public. Personally, I blame the parents.
She was the only redeeming feature of that little expedition. If I can count on anyone to be mature, patient and act appropriately in public, it’s my lovely TDQ. At 15, she is truly perfect, in her own dramatic way.
The early days of having a child with Down syndrome are filled with doubt and uncertainty. Why us, why me, why her (note, these feelings might be misguided but feelings are feelings, right? I try to be kind to the person I was then) Will we make this milestone (and what the heck do we do if not??) Should we empty our wallets for this or that new therapy? Are we making the right decisions? Should we have moved to another city or country where there are better opportunities? What do other people really think when they see this kid? Is she acting appropriately? It’s a terrifying, long and winding path with no particular end in sight.
But I’m there... the end. And the view is fa-a-a-a-a-a-a-a-a-a-a-abulous!
Noah’s Dad states “There has never been a better time for a baby to be born with Down syndrome”. Agreed. 100%. Medical technology, social acceptance, early intervention programs, informed doctors, you name it.
But from high on my horse as mother of TDQ, would I go back there? Hell, no! Here's why....
Big plans last Monday involved meeting at 4:00 pm (Me from work ... Dad, TDQ & Firecracker from a day of swimming lessons, lunching and library ... Golden Boy from a full-on day at soccer camp) to celebrate Dad’s birthday with bowling, half-price pizza and cake (so I forgot the cake and had to stop off at the grocery store. Sue me.) As any parent knows, going from a busy day to an action-packed evening = recipe for disaster and my trusty children proved to be no exception to this rule. Hot, tired, whiny, me-me-me-me-me-me-me-me-me.
Zoom in to the scene at about 4:45 p.m. Cue music of shower scene from Psycho.
GoldenBoy is moping around because he can’t get a strike and the Firecracker (7 years younger) is beating his score. Oh boy. Firecracker herself is frenzied, wild-eyed from hours in the pool and the lights and noise of the arcade that the bowling alley just had to install to torment parents.
What was TDQ doing? Bless her heart, she was sitting on the bench seat like an angel, waiting her turn. Get up, bowl, politely cheer for self, sit down. Albeit, rolling her eyes and making the odd snarky comment about children who behave poorly in public. Personally, I blame the parents.
She was the only redeeming feature of that little expedition. If I can count on anyone to be mature, patient and act appropriately in public, it’s my lovely TDQ. At 15, she is truly perfect, in her own dramatic way.
The early days of having a child with Down syndrome are filled with doubt and uncertainty. Why us, why me, why her (note, these feelings might be misguided but feelings are feelings, right? I try to be kind to the person I was then) Will we make this milestone (and what the heck do we do if not??) Should we empty our wallets for this or that new therapy? Are we making the right decisions? Should we have moved to another city or country where there are better opportunities? What do other people really think when they see this kid? Is she acting appropriately? It’s a terrifying, long and winding path with no particular end in sight.
But I’m there... the end. And the view is fa-a-a-a-a-a-a-a-a-a-a-abulous!
Wednesday, July 20, 2011
911
9:30 at night Golden Boy hands me the phone with nothing more than “They wanted to know how old I was and said that they needed to talk to you”. Wow, the possibilities are endless on that one...
Long story short, it’s the 911 dispatcher who, naturally, wanted to talk to a responsible person in the house. As my mum wasn’t available I figured there was no way to dodge the call and took the phone. Turns out, TDQ had called in a panic and given the performance of her life as Taylor Swift in Tear Drops on my Guitar (slowly sinking while leaning against the wall, mascara smudged... can’t breathe....)
Oh the drama!
The real problem, as it turns out, is fear of pain or perhaps more accurately fear of the unknown. TDQ has very real and intense period pain for about the first four hours of every visit from the silent red ninja (thank you NDM). We found early on that a quick dose of over-the-counter medication will ensure a smooth transition to ninja-dom. Miss the timing and all hell breaks loose – cramps, vomiting, sweats, Taylor Swift, you name it.
Having led a (thankfully) relatively pain free life I’ve been trying to get my head around the anxiety of knowing that pain is coming and being helpless to stop it. I think back to childbirth, wisdom teeth removal, the odd 3 day stomach flu when you know that the brief respite from hurling is just your body’s way of fooling you while preparing for the next wave. It’s truly a scary feeling to know that something is coming, a Mac truck of pain hurtling down the highway on a collision course for YOU.
Late on a Friday night after a week of summer action, with rowdy kids and my mind on 100 things at once, I guess I wasn’t paying enough attention. I did break out the Advil, warm up the comforting hot-pack and remind TDQ of the protocol (change out of the shorty-shorts, babe) but I think she is genuinely scared of what’s coming. The waves of pain which can, for her, get so high it’s hard to see over top. It’s hard to put myself in TDQ’s brain and see the world as she does – is her perception different to mine? It’s probably about as easy to analyze as whether you and I see colours the same – who can really tell? Blue is, well, blue. And red is (don’t get me started....)
Of course, while I mock the TDW mercilessly I also try to understand what’s going on and help her through it. She has had some terrible experiences both at home and school when she didn’t speak up soon enough. She sees the ninja approaching and knows that she’s in big trouble... what else to do but call 911?
Period pain is truly a pain in the arse. Fact.
Long story short, it’s the 911 dispatcher who, naturally, wanted to talk to a responsible person in the house. As my mum wasn’t available I figured there was no way to dodge the call and took the phone. Turns out, TDQ had called in a panic and given the performance of her life as Taylor Swift in Tear Drops on my Guitar (slowly sinking while leaning against the wall, mascara smudged... can’t breathe....)
Oh the drama!
The real problem, as it turns out, is fear of pain or perhaps more accurately fear of the unknown. TDQ has very real and intense period pain for about the first four hours of every visit from the silent red ninja (thank you NDM). We found early on that a quick dose of over-the-counter medication will ensure a smooth transition to ninja-dom. Miss the timing and all hell breaks loose – cramps, vomiting, sweats, Taylor Swift, you name it.
Having led a (thankfully) relatively pain free life I’ve been trying to get my head around the anxiety of knowing that pain is coming and being helpless to stop it. I think back to childbirth, wisdom teeth removal, the odd 3 day stomach flu when you know that the brief respite from hurling is just your body’s way of fooling you while preparing for the next wave. It’s truly a scary feeling to know that something is coming, a Mac truck of pain hurtling down the highway on a collision course for YOU.
Late on a Friday night after a week of summer action, with rowdy kids and my mind on 100 things at once, I guess I wasn’t paying enough attention. I did break out the Advil, warm up the comforting hot-pack and remind TDQ of the protocol (change out of the shorty-shorts, babe) but I think she is genuinely scared of what’s coming. The waves of pain which can, for her, get so high it’s hard to see over top. It’s hard to put myself in TDQ’s brain and see the world as she does – is her perception different to mine? It’s probably about as easy to analyze as whether you and I see colours the same – who can really tell? Blue is, well, blue. And red is (don’t get me started....)
Of course, while I mock the TDW mercilessly I also try to understand what’s going on and help her through it. She has had some terrible experiences both at home and school when she didn’t speak up soon enough. She sees the ninja approaching and knows that she’s in big trouble... what else to do but call 911?
Period pain is truly a pain in the arse. Fact.
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