Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘gfcf

Birthday Boy

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Today is Cubby’s 2nd Birthday.

We can have small conversations, he and I.  Something I never take for granted.  Something I was never sure would happen, even before we saw signs of autism in Pudding.  A couple of weeks ago, it was a balmy 70F and we were at the park, having such a conversation.  I told him that we were having a birthday party soon for him, like we’d had for Daddy.  He remembered birthday cake.  He told me he wanted a train cake.  I told him I’d do it.  He told me he wanted the bouncy castle.   Why not?  Balloons.  No problem.  He told me he wanted pretzels, taquitos, guacamole, fruit and candy.  I agreed.  Your day, your way, little dude.

Then he kept talking about his party, day in, day out.  He’d have two candles on his cake.  His friends S, A & K would be there.  He never wavered in his selections.  He had the vision for his party, I just had to deliver it.  He was just so excited.  The kid who spend too much time in waiting rooms.  Whose needs are sometimes crowded out by his sister’s demands.  The one who has to go with the flow, because the flow almost always has to go whichever direction Pudding determines.  I was going to make it happen.

Of course, he got a cold last week, and of course, he passed it on to me.  But I was still determined to make the party happen just the way he wanted.  Thankfully his grandparents came to help out.  Then, and this is where I began to shake my fist at the sky, it snowed!  Not much, but enough to thwart outdoor activities.  But I had promised my boy that bouncy castle, so we brought it inside.  I’d promised my boy all those foods, and I found or made egg, milk, and wheat free versions of them all.  He had the best birthday of his short life.  All his friends came, and were thrilled to bounce, and feast on Cubby’s favourite things.  He got the most amazing presents from our very generous friends.  Our house is now stuffed with cars, trucks, trains and superhero toys.  He didn’t want the party to end.  He fought going to sleep for as long as he possibly could, trying not to let the day end.

Through all of this, his sister did wonderfully.  There was a slight confusion about who gets to open presents, but she managed to back off before it got ugly.  With being ill, I hadn’t had chance to make her a social story, which makes the fact that she held it together so well even more impressive.  For once all the attention was on him, and she did nothing to interfere with that.  I’m calling that her gift to him.  It was the day of his dreams, he deserves no less.

The very strange thing, is that this was all supposed to be very different.  When I was pregnant with Cubby, his ultrasounds revealed abnormalities.  We prepared ourselves that he would be our special needs child, little knowing that we already had one in Pudding.  Two years ago in Luxembourg, our little guy came into our world.  We expected the worst, and hoped for the best, something that I don’t seem to have stopped doing ever since.  Yesterday was another one of those days tipped towards hope.  Thinking about the rush of love I felt when I finally held my little fighter, I can’t help but expect there will be many more just like it.

Happy Birthday, my sweet boy, you exceed my expectations every day.

Needless to say, the train cake isn't sugar-free!

Cubby, Pudding and friends on the indoor bouncy castle.

Written by Spectrummy Mummy

March 28, 2011 at 7:27 am

Posted in Sibling

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Spectrummy Daddy

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Today is my wonderful husband’s birthday.  I could write about how every day he demonstrates the strength of unconditional love, but I can show you instead.  And I’ll show you how he never stops trying to connect with our girl, even when it is hard going.  I’d tell you that the world is a better place for every day he is on the planet, but you can see that for yourself.  Read on for the first guest post he wrote, and please join me in wishing him a very happy birthday.

……………

Hello, everyone.  Spectrummy Mummy asked me if I would like to do a guest blog, and I reluctantly agreed.  I’m kidding, I jumped at the chance.  Please don’t go visit another blog, I promise Spectrummy Mummy will return tomorrow.

When she asked me what I was going to blog, I had to think about it for a bit.  Do I talk about one of the greatest days of my life, when I became a father?  (And the German nurse in the delivery room that still makes us laugh.  Great story.  Really.)  Or, do I talk about how I cried when my pudding said “I love you Daddy” after she was diagnosed, because I was afraid she’d lose the ability to say it later on?  I wasn’t as well informed then as I am now.  She still says I love you daddy.  And then I realized what I wanted to talk about.

A daddy’s link to his little girl is always strong.  Usually there is something that is special between the two of them.  Ours was actually two things: weekend breakfasts and ice cream.  I come from a southern family that likes to eat.  We can all cook, and we like to eat good food.  Our love of ice cream and breakfast, particularly American biscuits, is passed down from generations like a good family history.  Proving that she was my daughter, pudding took to both of these items with zeal.  Every weekend I would ask pudding “What do you want for breakfast?”  She would always reply, “Biscuits and honey.  Bees make honey.”  I would smile, and make buttermilk biscuits for her.  We’d smile at each other, and I’d get a kiss from her with a thank you.  When we were out, if she was good, she was always promised ice cream.  It was always a treat from daddy for her.  “Pudding, what kind of ice cream do you want?”  “Strawberry with sprinkles” was the inevitable reply.  It was the pink ice cream, you see.  It was Pudding and daddy’s special thing, and something we bonded over.

When Pudding kept waking in the middle of the night screaming, we knew there was a problem.  When we took her to Dr. P, she suggested that perhaps we should take her to an allergist, just to rule that out as a cause.  When we received the results, my heart sank.  There it was: milk, oats, wheat, and all the others.  There’s your ice cream and your biscuits gone.  There was weekend breakfasts, ice cream treats, and the bonding I had with my little girl.  How was I going to connect to her now?  It was like starting over again 3 years later.

However, Spectrummy Mummy came to my aid when she caught me crying.  (That is also passed down in my family from generation to generation.)  With the wisdom of Solomon and the looks of a young Grace Kelly, she explained that this could be viewed as a good thing.  While we had previously connected by eating, a potentially unhealthy and dangerous activity if overindulged, we could now find something else to connect with.  So, three years after I first became a dad, I started over with my daughter.

Now, we swim together, and she does dog-pile on daddy.  When I get home, she asks to be put on daddy’s shoulders.  We have a variety of things we do to help with her vestibular issues.  Things like whip-saw where I throw her over my shoulders and spin around.   And, I am proud to say, she can point at my t-shirt with the Justice League of America on it and correctly point out Green Lantern, Batman, Aquaman and Superman.  She also likes playing with the DVD player (to my consternation) and with mummy’s iPod, just like her daddy.  Maybe one day she’ll be able to eat ice cream and biscuits again.  Right now, I’ll settle for fruit sorbet and gluten-free pancakes and hearing my daughter laugh when I tickle her, and holding her tight when she asks for a squeeze.

Written by Spectrummy Mummy

March 10, 2011 at 6:36 am

Thanksgiving Memory

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AutismLearningFelt

This week’s theme for the Special Needs Blog Hop is Thanksgiving Memory.  Now, as you might expect with me not being raised American (or Canadian), Thanksgiving is not a big deal for me.  I don’t so much like pumpkin pie.  Our first Thanksgiving was right after our honeymoon in Key West, so I decided to keep that going and substituted pumpkin pie with key lime pie.  That tradition has stuck with us ever since.  The first time Pudding had a taste of key lime pie, she fell in love.  We told her what it was and she immediately pointed to her plate and said, “More key lime pie, right here.”  We didn’t know at the time that she had such difficulties with spontaneous communication, but she has always been more than capable of getting her needs met when she is motivated enough.  Let me tell you, key lime pie is motivation enough.  After she finished her second piece, she promptly did this:

She is definitely a girl after my own heart.

Remembering this is bittersweet to me, because there is no way we can make a key lime pie without eggs, milk, and gluten, so the tradition won’t continue this year.  Unless anyone knows of a GFCF key lime pie recipe?

Written by Spectrummy Mummy

November 18, 2010 at 3:06 pm

Less is s’mores

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So I’ll begin where I left off, with the graham crackers.  For those of you reading from across the pond, the closest match I can come up with for a graham cracker is a digestive biscuit, with a bit of honey and cinnamon.  You can just eat them as they are, but they are often used in desserts like key lime pie, which tastes like my honeymoon.  They are famously (well, in America) used to make s’mores.  S’mores are a graham cracker sandwich of toasted (preferably on a camp fire) marshmallow and chocolate.  They are delicious, or s’moreish as I like to say.  Eating s’mores is one of those quintessentially things you do as an American kid.  Pudding’s preschool autism class is doing a camping theme, with s’mores.  And if I lived an ordinary life, that would be the end of it.

Pudding is allergic, sensitive, or intolerant to gluten, dairy, potatoes, rice, carrots, beef, green beans, eggs, fish, cashews and peanuts.  We are new to this discovery, and there are likely to be more foods she can’t eat.  All the stuff you can buy that is gluten free has dairy, or rice, or potatoes in.  So you can’t buy ANYTHING that is pre-made and you have to make EVERYTHING from scratch.  When I say “you” I just mean me, of course, because I’m yet to encounter anyone with a kid with this many food allergies, though I’m sure such souls do exist.

Maybe one day I’ll get around to telling you about there being a sizable sub-section of the ASD population with food allergies/sensitivities/intolerances, and that a diet removing the proteins in wheat and milk has been helpful for some children.  How there is a whole industry springing up around this, for better or for worse.  How I think all these allergies are created by the food industry.  I’ll get around to telling you about what we found with Pudding, but it is an ongoing saga, and I really need to stick to those damn graham crackers.

I know you’re probably wondering why I don’t just give her something else to take to school instead.  I could, of course.  She may not notice, she probably wouldn’t even care if she did.  She seems to like her graham crackers without the chocolate and marshmallows spoiling them, so not having s’mores is not going to be a big deal for her.  So many things are a big deal for her, so many things are going on right now, that it seems ridiculous that I would consciously create my own big deal.  That is exactly what I did yesterday.

So, why?  Well, part of it is because I have a little bit of guilt that we live our nomadic lifestyle.  That our kids don’t get to have the same experiences as other kids.  Don’t get me wrong, they’ll have other, amazing experiences, but they often seem to miss out on the more mundane things.  We just have one year left of being a (half) American girl living in the USA.

Secondly, in a world where she and her school friends are the odd ones out, I don’t want her to be left out.  I too had allergies as a kid, and remember being banished from the cafeteria when the offending food was served.  Clearly her beloved teacher Ms. S is not about to banish her, but being marginalized in a special ed class is the kind of thing they write country songs about.

Thirdly, during my extensive web-based research (really, I need a doctorate for all my studying this last year) I came across an alarming link between anorexia nervosa and girls with Asperger’s Syndrome.  I know, I know, that I’m worrying about that too early for a girl who has always been over 95th percentile on the growth charts, but I can’t remove these pieces of information once they get in my brain and they twist and turn themselves around until they become legitimate fears.  We’re starting to see more control and choosiness over her food that may be a result of the restrictive diet and those stupid allergies.

I thought I’d turn it into one of those fun, crafty-do-it-together things that are fine for other people, but quickly degenerate over here.  I’d bought some teeny-tiny animal cutters that were adorable, but impossible to use.  So Pudding used a gingerbread man cutter, and I used the animal cutters.  Next came what we take as conversation, but others might be more inclined to call monologuing (yes, that is a word, it was in The Incredibles).

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Written by Spectrummy Mummy

July 30, 2010 at 9:04 am