Posts Tagged "amazingness"

Mama's Christmas List

Posted by on Feb 16, 2011 | 1 comment

My kids love Christmas.  Not a surprise, I know, but it’s still exciting for us.  My husband and I have waited eagerly for the time our children would finally “get” the holiday and all of the traditions surrounding it.  Finally, at the ages of 5, 3 1/2 and 2, they collectively figured it out.  Christmas fever ran rampant in our home from American Thanksgiving on (we celebrated Canadian Thanksgiving as well, but since it’s in early October, that’s a bit early to bring out the tree).

We love the whole circus that is Christmas.  We have countdown calendars for each child, we hang lights and decorations, we have a big tree with a star on top, stockings (actually two apiece, one for toys and a smaller one for treats), we spread “reindeer dust” (oatmeal and glitter) so they can find our home, we leave cookies and milk and carrots out on Christmas Eve, and, of course, we go visit Santa.

Until now, the Santa visit has been simply an opportunity for the boys to see the man who brings toys in person, and a photo op for mama.  They love the idea of him, they’re tickled to see him in person, they reluctantly speak to him and have their photo taken.   Last year all three boys asked Santa for a train, and they got trains.  I didn’t push the idea of a list too much, and they didn’t seem too interested.

This year, before we went to see The Man Himself, I asked my children once again if they wanted to make a Christmas list.  They had all decided to ask for a Polar Express train (conveniently suggested by me), and that seemed enough for Lennon and Kieran.  Jack, however, was intrigued.  He wanted to know more about this magical way to get more stuff.   After I explained that Jack could write a list to give to Santa telling him what gifts he’d like for Christmas, he was all about it.

I recall sitting on my bedroom floor as a young child with the huge Sears, JC Penney and Toys-R-Us Christmas editions spread out before me.  I compiled novel-length missives to Santa, including things I had never even heard of but discovered in the depths of the catalogues.  I rarely got a fraction of what I asked for, but it wasn’t about that.  For me, just the thrill of having the whole world of toys available for the asking was good enough.

Jack didn’t need a catalogue.  He was ready to go.  He started telling me what he wanted, slowly at first, then with breathless abandon.  I had to go grab a pen and paper.  Jack wanted a fire truck, a book about “strange things happening,” the aforementioned Polar Express train, a new water bottle, some new clothes, new sheets for his bed, and on and on and on.  Together, we wrote out his list for Santa, and I mailed it to the North Pole.

With regards to Jack, that is rarely that.

About a week before Christmas we were returning from a quick trip to the US for supplies (cheese is a lot cheaper there, and we’re quite the cheesy family).  Sitting in line at customs, Jack was telling his Daddy about his Christmas list.  When he realized that Daddy didn’t have his own list, Jack decided that he needed to rectify the situation.  He then told us what Daddy would be asking Santa for for Christmas:
1) new headphones (Daddy sleeps listening to Old Time Radio and goes through earbuds quickly)
2) a new phone (Daddy goes through mobile phones quickly, too)
3) a new mask (Daddy wears a c-pap to sleep, and the boys like to take it apart)
4) a new light bulb for the house (the light bulbs keep burning out in our new place, so this is just practical)

Not bad.  Some fun stuff, some things he needs, all in all a well-rounded wish list.  On a roll, Jack turned to me.  I was eager to see what I would be asking Santa to bring for me. In retrospect, I shouldn’t have been so excited.
1) a tent for camping (we have never camped, not even once)
2) baby gate (we got rid of all of our gates when we moved, and maybe I miss them?)
3) baking soda for throwup (all of us had a wicked stomach virus before and during Christmas)
4) a red flag to wave to stop the van for when daddy forgets me (he learned about the red flags for stopping trains – not exactly sure why Daddy would be driving off without me)

No toys, nothing fun, unless perhaps he thinks I get some joy out of cleaning nasty things up with baking soda.  That’s it.  He was adamant about it, too.

For some reason I didn’t get anything on my list.  I can’t wait to see what I ask for next year.


What I Want for Christmas

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Jack Talk

Posted by on Jan 20, 2011 | 2 comments

Jack Talk

Language has always fascinated me.  In high school, when other kids were exploring the worlds of science and history and economics, I fueled my educational passions with linguistics.  I love the building blocks of words, the history of words, the sheer beauty of words.  In a word, I’m an etymology geek.

My classmate and high school next-door neighbor only helped to pique my interests, as he was – and remains – the biggest word nerd I know.  We studied linguistics and French together (while he also studied German), and, in his spare time, he created an entirely new language.  He built it from the ground up, complete with nouns, verbs, present- and past-participles, you name it.  I still have the lexicon he gave me.   Today he is a very successful translator, which surprises me not in the least.

I love seeing a joy of words in others, and this feeling is tenfold with my children.  All three are quite verbal, each in his own unique way.  My two-year-old was stringing together five-word sentences at the ripe old age of 20 months.  Lennon, at almost four, is fascinated by new words and their meanings, and has no problem asking a million questions about them.  Jack, as is his wont, takes his love of language to a whole other level.

Jack tends to take on new things, master them, then make them his own.  For instance, he received a new train and tracks for Christmas.  He played with the set as-is for a day, then started to dismantle and reassemble it.  Once he figured out how to put it back together “properly,” he moved on.  He spends his afternoons building elaborate tracks all over the living room, incorporating pieces from several different brands, creating entirely new systems.

He does the same thing with his language.  I know that children often play with words as they grow and understand the complexities more and more.  Twins will go so far as to create their “own” language, shared with no one but each other.  Jack, though, is like my neighbor.  He has words of his very own, each with individual definitions and rules and tenses.  We used to think Jack was just filling gaps in his vocabulary, but instead of decreasing as he’s grown older, his personal lexicon has gotten larger.

Here are a few of the words he uses most often (with definitions, for those who are not fluent in JackSpeak):

Glaver – /glayver/ noun  1) a small measurement of size. “I want just a glaver of cake.”

Blaver – /blayver/ noun and verb 1) something that shoots lots of water, like a water gun.  “I loved the blaver at the water park.”  2) “a thing that blave-s,” meaning anything that shoots water.  “The fountains at the water park were blaving.” “The blaver sprayed on the fire engine and made it clean.”
Dater – /dayter/ noun 1) “the turner that turns things into a train engine.”

Dieter – /deeter/ verb “when you turn into a train engine.” (I’m not convinced this is the actual definition, but I forgot to write it down initially, and when I asked today that’s what he came up with.)

Droove – /droove/ verb 1) the past-tense of “drive”. “I droove my trains over the tracks.” “Daddy droove me in the van to school.”

Scroove– /skroove/ verb  1) to twist or turn something, like a platform swing on a pole at the playground. “I want to go scroove on the playground.”  2) the past-tense of “screw.”  “My swing scrooved really quickly down the pole.”

Cayvla – /cayvlah/ noun 1) a tool for opening and closing things. “I used a cayvla to open the seat on my bike.”

Glove /glohve/ verb.  Sadly, I again forgot to write down the definition of this one.  All words today in Jack’s world pertained to trains, and I’m pretty sure this isn’t train-related.

These are not one-time-usage words.  Each plays an active role in his vocabulary, and he adds new ones every so often.  Jack is also becoming multi-lingual, and his new words are taking on both French (via school) and Spanish (via Dora and Diego) characteristics.

I don’t know if Jack will become a great linguist.  I don’t even know if, a year from now, he’ll still remember and use these wonderful words.  I do know that I will continue to support and encourage his love for language, and hope that someday he’ll be my fellow word geek.


I have to edit this to add that there was definitely a time we never dreamed Jack would be verbal at all, let alone get creative with his words.  At the age of two, when he first began receiving his services, he had only four words he used with any frequency.  I give all credit to Amanda Chastain with The Speech Network, and the amazing team at Therapy West in Los Angeles for unlocking my child and releasing his genius.  To them I say thank you, thank you, thank you.  Believe me when I say we think of you every single day.

Miss Amanda

Early Intervention works.  If your child has a speech delay, don’t wait.  Our pediatrician told us to “wait it out” until he was two-and-a-half.  Instead, we got him assessed, got him into speech therapy, and got him talking.  By age two-and-a-half Jack was well on the road to “normal” speech.  That may not be the outcome for all children, but you can’t know until you try.

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A Heart Story

Posted by on Jan 19, 2011 | 2 comments

Jack has made no bones about the fact that he’s happy in our new home.  Every day he tells us how much he loves our house, or his school or the city itself.  Even a simple outing for pizza downtown becomes a “pizza adventure” worth discussion for days.

It’s not unusual for autistic children to touch too much or hug too tightly or talk nonstop.  Jack is no different.  In addition to deep hugs and constant chatter, though, Jack loves to wax poetic.  He has a flair for language and really enjoys sharing his feelings.  Jack is not just an open book, he is a recorded encyclopaedia on autoplay.  If you’re not paying attention, you could miss something outstanding.

Recently, during one of Jack’s more passionate orations, he stunned me.

Jack:  “My heart is so happy.”

Me:  “Why, baby?”

Jack:  “Because you made a story of it.  You made a priviledge of telling the story.”

Me:  “About what?”

Jack:  “You told me a story about my happy heart.  It wasn’t a bedtime story, it was a heart story. You made my heart so happy, mama.”

Me:  *sniff*

I don’t know what story I told him.  I have no idea what he meant, honestly.  I do know that he stopped me in my tracks and brought me to tears.

As much time and energy as I spend trying to “manage” our lives and “deal” with our unusual life with autism, I wouldn’t change a second. 

Bring on the chaos, the stress and the insanity.  I told my little boy a heart story and made his heart happy.   I am speechless, and I, too, am happy.

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I Forgot to be Sad

Posted by on Jan 16, 2011 | 1 comment

Someone said something that struck me in my heart of hearts last night.  I was chatting with several people about  Temple Grandin on Facebook, and realized that evidently she is not as well-known here in Canada as she is in the USA.

Dr. Temple Grandin, for those of you unfamiliar, is an amazing autistic individual who inspired a HBO movie starring Claire Danes.  Her story has, in my opinion, almost completely changed the autism conversation.  She is a brilliant person who has broken barriers as a woman, as a scientist and as a person with autism.

Claire Danes has won many accolades for her portrayal of Temple, and she just received a Golden Globe at this year’s ceremony.  One of my Canadian friends pointed out that while the movie seemed to be winning a lot of awards, she had no idea who or what Temple Grandin is.  I was surprised.  In the United States, Temple’s story has been heralded for over a year now.  In Canada, however, HBO is not as pervasive as it is in the US, and a lot of their programming gets lost in the shuffle. 

After I explained who Temple is, another commenter joined in.  “She has autism?  That’s so sad.”

This comment struck me sharply and immediately.  To begin with, it was obvious to me that this person, who did not know me or my experiences with autism, had no idea what Temple has accomplished.  To use the word “sad” in the same sentence with her seemed completely off to me. 

Then I realized that this comment was affecting me much more than just abashment at someone not understanding the greatness of Temple Grandin.  The immediate need to feel sadness for someone with autism, without knowing anything else, brought tears to my eyes. 

Autism sucks.  Autism is stressful, it is chaotic, it is nerve-wracking.  Autism can quickly turn an easy day hard and render simple outings impossible.  Autism affects entire families, not just individuals, and it is selfish.

And yes, for a lot of families, autism is devastating.  There are individuals so locked inside themselves they cannot have meaningful relationships or lead productive lives without elaborate intervention. 

For a lot of us, though, autism is also a magical, wonderful thing.  Autism has given my child the eyes to see things no one else around him can see.  Autism has helped me reach inside myself and find wells of patience I didn’t think I possessed.  Autism has made our family flexible, but stronger than I ever could have imagined.

When I realized for the first time that Jack was, in fact, autistic, I cried.*  I raged at the loss of a life that never was, never would be.  I stayed in a cocoon for several days and emerged transformed, looking at the world in a new light.  It’s been just over two years since we got his “official” diagnosis, and now autism has a cozy spot in our home.  Autism is an unlikely passenger in our lives, one we never expected to join us, but one we couldn’t imagine not having around now.

And somewhere along the way I forgot to be sad.   I think it’s shocking to me that someone’s initial reaction to autism is sadness, but then, they don’t know my child.  They don’t know my life.  Their eyes haven’t been opened to the things we see every day and used to overlook.

*Read “Jack’s Story” for the entire story

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Who Needs Oprah?

Posted by on Nov 20, 2010 | 3 comments

It’s that most wonderful time of the year, when people all over the world stop what they’re doing to bear witness to wonderful things.  Glorious things.  Oprah’s Favourite Things, to be exact. 

This year is not only the 25th anniversary of Oprah’s show, it’s also her last season, so the goodies were especially outrageous and fabulous.  By now you know what wonderful, glorious things Oprah loves this year and gave to her audience (whether you like it or not). You also most likely know that Oprah’s favourite things do not fall within the budget of most families.  Well, most of them.  We actually took a 10-day vacation to Jamaica on a plane piloted by John Travolta last year.*

I watch Oprah’s Favourite Things show with equal parts jealousy and envy, especially this time of year when I’m engaged in retail battle.  Ok, I do most of my shopping online, but it’s still hard.  My back gets sore poring over Fishing For Deals and Amazon on my laptop for hours on end. 

Thankfully, my children are still young enough that they don’t yet have their own personal wish lists of coveted treasures.  Sure, they scope out new cars and trucks and trains when we’re out at the store, and will happily tell Santa about them at great length.  The days of pages-long Christmas lists full of hard-to-obtain and/or ridiculously expensive objects they can’t live without, though,  are at least another year away.

Every night when I tuck my children into bed, I spend a few minutes of one-on-one time with each of them.  I sit close, stroking their hair, paying attention to whatever they choose to discuss.  The core of the conversation is one question from me: “what did you like today?” 

This started simply enough a few years ago as a way to both help Jack learn to engage in conversation, and to help my boys remember and look forward to things.  Talking things up is important with toddlers, whether or not autism is involved.  When we were planning our first trip to Disney, we chatted about Mickey for a week beforehand.  We did the same with Santa, the Easter Bunny and moving to Canada.  The more we discussed things, the more they got excited.  And the more they remembered. 

These few moments have become a treasured part of our day, and a way for me to find out things they wouldn’t otherwise tell me.  It’s especially helpful with Jack, now that he’s in school all day and not very forthcoming with details when he gets home in the afternoon.

So every night, I ask the question.  They tell me their favourite things of the day, we talk for a bit, and I kiss them goodnight.  Lennon usually tells me about whatever playground his daddy took him to after they dropped Jack off at school.  I think he likes the closeness more than the question, since his answer is almost verbatim night after night.

Jack likes to tell me what particular food in his lunch or snack he enjoyed that day. Occasionally, if we’ve done something different, he’ll talk about that, but it’s always something about himself or something he’s done.

Last night, he surprised me.

“What did you like today, Jack?”  I asked as usual.

“Lennon read that whole book to me today.  He knew all of the words.  You’re really proud of him.”

I smiled and asked if there was anything else he liked about his day.  There wasn’t. He was happy just being proud of his brother. The empathy, the pride, the joy in his brother’s accomplishment… these are all concepts I might never have expected from Jack.  

There are any number of material goods I would enjoy having.  If I had been in Oprah’s audience yesterday I would have been screaming and fainting in the aisles with all the other crazy people receiving gifts they never dreamed of “needing.”  But in all honesty, I wouldn’t trade a single coveted Favourite Thing for the one treasured thing I already have:  a life of wonderful, glorious unpredictability.

*We did not.

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