Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘anaphylaxis

U is for Untruth

with 6 comments

I have two very different children. I mean that in the sense that they are different to each other, but also that they are, or can be, different. Atypical. Not the norm, whatever that is. And just to keep me a even higher on my toes (toe-walking!), sometimes they behave very typically, and that confuses me the most of all.

Lately in our house, we have been dealing with a lot of untruths. Cubby is a gifted story-teller, and has been from an early age. I sometimes question whether he can tell the difference between fact and fiction, so immersed is he in his alternate reality. He’ll even assure us that he is not lying as he states things that aren’t true…such as his assertion one evening this week that his school is teaching him to speak Norwegian.

Back when we were in the U.S. a couple of months ago, a lady at the park started speaking to me in Spanish, and after a couple of sentences revealed that I am not exactly a native speaker, she told me that Cubby had informed her that we came from Mexico (he has never been there) and he spoke English because his nanny (we’ve never had one) is from Australia (again, never been there).

I’m puzzled by all of this, because our real backstory is just as interesting as this one he chose to create. I struggled to find a purpose for him telling a complete stranger this misinformation. A friend suggested that it is just more interesting to him, and our reality, even one that spans the world, is mundane to him. He has been there, done that, and other locations are new to him, and therefore intrinsically more exciting.

Pudding is different. I used to believe the myth that autistic children don’t tell lies, but Pudding has disabused me of that, and many other ‘facts’ about autism over the years. She just doesn’t lie on the same scale as her brother. Her more recent untruths have been more pragmatic in nature. They have a function that is very clear to me. Unlike her brother, I understand why she lies. Often it is for the same mundane reasons of most children: she wants to avoid getting into trouble for something she knows she wasn’t supposed to do, or she wants to get something she wants.

But while easier to understand, and certainly easier to deal with than Cubby’s untruths, Pudding’s simple lies are the ones that scare me the most.

As you may know, Pudding has a life-threatening allergy to peanuts and tree nuts. We’ve known this since she was a baby, and her whole life we’ve taught her that she must always avoid these items, as well as many other foods that look safe, but may contain items that are very dangerous to her. She has been able to say from the age of three that she is allergic, and will sometimes volunteer this information about herself to others.

While she carries an epi-pen, and her school cafeteria doesn’t offer nuts, and her classroom is “nut-free” for snacks, we still rely on her to keep herself safe. An incredibly challenging thing for any young child, but more so in the case of one with the additional mix of autism and ADHD.

Imagine then, how scared I was at this story her aide recounted to me last week. It was snack time, and one of the other girls had cookies. A most covetable item at the best of times, but when compared to the healthy choices I’d sent with Pudding (carrots and cucumber sticks with rice cakes), the temptation had been too much.

Noticing Pudding’s gaze, the girl wanted to share. But what is more, before she did, she actually asked Pudding if she had any allergies.

And Pudding said no.

A lie that could, quite literally, kill her.

In this instance, there were no dire consequences. Her wonderful aide was right there, and intervened immediately. There were no nuts in the cookies (thank you, parents who obey nut-free rules), and we know to continue to reiterate the dangers of taking food we don’t know to be safe.

It is messy, this parenting thing. Allowing our kids to be themselves, develop naturally, and yet keep them safe is the hardest thing to do. And that, my friends, is no lie.

This post is part of my A-Z series. You can read the rest by clicking >here<.

 

Advertisements

Written by Spectrummy Mummy

September 5, 2014 at 3:05 pm

Juggling

with 7 comments

…I’m humbled by your ability to juggle…

…you’re obviously skilled at finding balance in your life…

…am in awe of your ability to handle so much at once…

These were comments on a recent post.  You know- the one with Hillary Clinton.  Yes, I’ll keep name-dropping, because it is now years since Hugh Grant smiled at me, and I need to bump up the star quality of this blog.

The last couple of weeks have indeed been just like a circus.  But I can’t juggle.  When I try to walk the tightrope, it becomes clear there is no balance.  You might think otherwise, because you don’t know what happened last week.  So I’ll tell you…

Last Saturday, there were two very important meetings that both Spectrummy Daddy and I had to attend.  There was nobody to take care of the kids, so I took them into work with me.  I’ve done this before, and the kds are usually happy there.  I have a TV and DVD player in my office for some reason, so that and playing with office supplies is generally enough to keep them occupied.

We bought some ready meals from the supermarket that we could heat at work for lunch.  The kids food was allergy-safe. but mine contained cashew nuts.  And because I had so many balls in the air, and my eyes were on those, I didn’t see until too late that Pudding had reached across to my food, scooped a tiny bit of sauce and stuck the finger in her mouth.

It was the first time she’d ever actually consumed cashew nuts.  Her allergy readings are from RAST tests.  Her face started to go red, and Spectrummy Daddy ran to get the epi-pen.  By the time he got back her eyes were swelling closed, and she’d got hives all over her face.

Her breathing was still normal though, and her lips and tongue didn’t seem swollen.  I held off on using the epi-pen, but her reaction was fast and serious, so I grabbed her and drove straight to the hospital.

It would be an entirely different post to write about how awful the hospital experience was for an already overloaded child who hadn’t been prepared to go there.  I was terrified, and I lost my mind.  When asked who her doctor was, I gave them the name of the pediatrician she had in Luxembourg when she was first born.  The one who told me that she “loves herself like a kitten” when I tried to question some of Pudding’s puzzling behavior.

The nurse asked if she had any other conditions.  I knew they were unlikely to have heard of Asperger’s, so I went straight to Autism.  And no, she hadn’t heard of that either.  Or ADHD.  At this point the doctor from the Consulate called and asked if I needed him to come.  Yes, I did.

They quickly administered an anti-histamine injection and oral steroids.  Her vitals were all normal, she never developed anaphylaxis…this time.  She responded immediately to the medication, and I took a photo to reassure Spectrummy Daddy, only I was shaking so hard I couldn’t manage to actually send it to him.

Image

In fact, 30 minutes later, we were free to go.  I was still shaking, but relieved.  As we drove back I remembered that I’d missed the meeting, and I’d left Cubby with Spectrummy Daddy.

It wasn’t so much that I felt the balls dropping, as I looked down and realized they were already on the floor.

I’ve had a whole week now, before writing this.  Time for things to return to our version of normal.  Time to let the guilt ease away, and learn the lessons I need to instead.  Like always keeping her environment allergy-free.  Like if the circus comes to town again, I’d better fly in some carnies to help out.  And by carnies, I mean grandparents (in the nicest possible way)!

Perhaps some mothers can manage this juggling thing better than I can.  But in that hospital last week, I knew I was holding on to the most important thing, and I wasn’t going to let her go.  Let the other balls fall as they will.

Written by Spectrummy Mummy

August 11, 2012 at 6:16 pm

Mosquitoes and Hope

with 5 comments

Let me preface this by saying that as I write, I’m covered in dozens of mosquito bites both old and new.  The fresh ones are demanding most of my attention, distracting me with their itch.  They are raised and red, each one about the diameter of an orange.  As bad as my reaction to mosquito bites, as attracted as they are to me.  Sitting yesterday in the shady woodland near a creek, I was a veritable banquet- no matter how much spray I applied.  It is fair to say that I hate mosquitoes, yet perversely, in the last few days they have given me hope.

I’ll start at the beginning of last week.  We had returned from visiting family in Florida.  Pudding was supposed to go back to school the next day, but couldn’t as we didn’t have a school-authorized Epi-Pen.  Only the week before we had learned that Pudding has become dangerously allergic to peanuts, despite never having them (or tree nuts) as part of her diet.  In fact, over the last year, she has become almost 10 times more allergic to peanuts than she was, even though she has had a very restricted diet monitored at all time, with no chance of cross-contamination.  With the news I resigned myself to the fact that I have no control.  No matter what environmental changes we try to implement, certain tendencies are just written into her DNA, I can’t change it, I can only accept it.

But I’ve been struggling to accept anaphylaxis in a child with autism.  A child who has a real disconnect from her body and senses, to the point where I’ve witnessed her receive injections without flinching, without noticing or feeling the needle enter her skin.  A girl who can’t tell me that she is ill, or in pain.  A child whose ADHD makes her incredibly impulsive, the one who would see an unattended chocolate bar with peanuts and eat it before any of us would notice.  And then be unlikely to tell us what had she had done.  A child whose pragmatic language skills would limit her ability to tell us that something was wrong, that she can’t breathe.

I’ve been terrified.  I’ve raged at the unfairness of it.  I’ve worried about it constantly.  And then, accepted that there is nothing I can do to change it.  It is part of her, and I need to accept it, and learn how to work around it.  It could be worse.  She can be in a room with peanuts, she may even be able to touch them, our main concern is with ingesting them.  As long as I continue to provide all her food, and she is watched to make sure that is all she eats, she should remain safe.  And we repeat and reinforce what she can and can’t eat, and hope for the best.

But back to mosquitoes.  One afternoon last week, the kids wanted to play on their sand and water table.  I joined them outside, but upon seeing the mosquitoes, I decided to go back inside and watch them through the patio doors.  The kids don’t tend to get bitten, so I thought they’d be okay.  Later that night I learned that their apparent immunity was only guaranteed when I was around, offering my tasty blood to the little suckers.  Pudding in particular had fallen victim to their thirst, and had a few bites.  She came up to me and showed her leg:

“What’s that, Mummy?”

I told her they were bug bites, and showed her the corresponding wounds on my own body.  She repeated bug bites as she prodded each one, and I applied the cream.

Itchy.”

Just one word.  One little word, I’d never heard her utter before, but it told me so much.  She was able to accurately describe a body sensation.  It gives me hope that, should the worst ever happen, she’d  seek me out, or seek somebody out, to find out what was wrong.

It is going to be a long time  before I’ll feel confident that Pudding can understand the danger of her allergy, but one mosquito bite at a time, I’m hopeful we’ll get there.  Now if you’ll excuse me, I have some cream to apply.

Written by Spectrummy Mummy

July 11, 2011 at 7:28 am