Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for the ‘A to Z’ Category

U is for Untruth

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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<.

 

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Written by Spectrummy Mummy

September 5, 2014 at 3:05 pm

T is for Transitions

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Back to my A-Z, and here comes T. T is for transitions. If there is one thing I know about as mother to a child on the autism spectrum (and one not quite), who have lived on four continents…it is transitions.

I’m always interested in transitions, and the way children and adults respond to them. We just moved again to South America, and to say that my children handled it well feels like the world’s biggest understatement. They have always been, and continue to be very excited by each move. They breeze through goodbye ceremonies, and jump right into new homes, new schools, new adventures.

The hardest transition we ever faced was when Cubby was first born, and we left Europe for a brief stay in the U.S. on our way to Bolivia. We never got there, as it was during this time we noticed Pudding’s differences, that would eventually lead to her diagnosis on the Autism Spectrum.

I remember a low point where we had less than a week for my husband to find a job, for us to find a home to rent, and figure out what services we needed for Pudding, and eventually Cubby too. We were rookies, learning our lessons the hard way.

In the five years that have passed, we’ve learned some supports that help, but yet I see friends apply those same strategies to their own children for smaller transitions, and they still seem bumpy compared to our big ones. At times I wonder if experiencing such a painful transition helped rewire our brains, or at least reframe each subsequent move into something that seemed navigable by comparison.

One of the strategies we use for dealing with tough transitions is to make sure we are entirely open with the children about what to expect. For this last move, the kids and I had to go by ourselves in order to arrive in time for the start of school. For a few weeks, we didn’t know when he would be able to join us, then we finally got a date.

Daddy was due to arrive on Thursday, a fact that we had talked about, written down, added to calendars, you know the drill. So, of course, last night I was dealt the task of having to explain that a general strike in the city meant he could no longer fly in when he was supposed to. And even though they have been anticipating this date, with a few tears from Cubby, and a little repetition from Pudding, they just accepted this new truth. A truth that would have sent me as a child into a full blown meltdown.

Which is not to say that we don’t experience the meltdown. Cubby is a classic attention-seeker, and will use his behaviour to get noticed, if that is what it takes. And naturally, he needs a lot of extra attention during this time. Pudding, on the other hand, reserves her rare meltdowns for one very specific reason: injustice.

She finishes her school at one, although the rest of the school continues until half-past three. The reason is to give her time to get to her therapies, which can’t be provided by school. But Pudding doesn’t accept the reason, and sees only the unfairness of having to leave when all  the other kids (including her younger brother) get to stay.

Interestingly, those who observe her reactions, and don’t know Pudding as well as I do, have been known to use such instances as evidence that she “struggles with transitions.” Nope. She struggles with unfairness.

And unlike transitions, I’m at a loss to help her to deal with these negative experiences, other than offering my empathy and comfort. Because while I hate for her to be so upset, I’m glad that she she has this sense of justice, and expectation of fair treatment. I’m glad she uses her behaviour to communicate what she can’t fully express in words. Such indignation of unfair treatment will serve her well.

You see, there is always a bigger transition ahead of us. Bigger than moving countries- or continents, even- is the transition to self-advocacy. These are tools she will need to deploy for the rest of her life, especially when I’m not around. Or perhaps, because I’m around, but I’m not her voice: she is. 

The real question is: will I ever be able to transition as well as my kids do? 

Spectrummy Daddy, we’ll see you on Friday (I hope)!

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

Written by Spectrummy Mummy

August 26, 2014 at 3:05 pm

Posted in A to Z

R is for R & R

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Pudding reconnecting with my mum.

One of the benefits to living in (cue ominous music…) The Most Dangerous City in The World, is that the State Department grants us two R&R trips during our – assignment there.  Now, you know that we love Johannesburg, and what we have seen of the rest of South Africa.  But it is equally true that we need that break.  Back when we initially started planning that trip, we really needed it.

Then seasons change, and life alters, and you kind of get on with things.  Pudding has just started Kindergarten, and is doing very well.  I’ve only been working for a few weeks, and it isn’t the best time for me to be out of the office.  I adore Jozi in springtime.  The weaver birds are back, the weather is perfect, and it just feels lighter and happier there.

It reminds me of the early weeks when we first arrived, and just couldn’t believe our luck.  And then when, inevitably, the trip started to look like more hassle than a break, I wondered what kind of R&R it would actually turn out to be.

And then we actually arrived in England for the first time in almost four years, and it was all worthwhile.  It was Cubby’s first time here (outside of the womb) and he revelled in seeing double-decker buses and black cabs in London.  Both kids delighted in spending time by the sea- not the ocean.  And the kids got to meet their cousins, and spend time getting spoilt by their grandparents, and living, and playing, and being themselves.

We are having the time of our lives.  Or a time in our lives.  A time of many R-words.  We’re recharging, and reconnecting.  I’d even go so far as to say we’re resting and relaxing.  I knew we needed it, but I didn’t know how much.  I’ve taken lots of photographs here, and in almost every one, the kids are smiling.

Who knows, the kids might even start feeling so comfortable with their grandparents that we’ll even be able to have another elusive R-word: a few hours of respite.  Because just as we love Johannesburg, but need the occasional break…the same can be said of parenting high-needs children.

And if we can successfully Recharge and Reconnect, we’ll be Ready to go back to Routine.  And nothing to do but plan the next Rest and Relaxation, and make sure we don’t wait for four years next time!

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

Written by Spectrummy Mummy

September 5, 2012 at 8:42 am

Q is for Quiet

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And you thought I’d struggle with a ‘Q’ post!  Quiet is not a word I often associate with my children.  They both seem to make more noise than your average little one.  I tend to think of quietness or loudness being a personality trait.  In many ways it seems fixed, but as with all things to do with personality- nothing is set in stone.

I was a very quiet and shy child.  I’m still very much an introvert who likes being at home, and can find busy social events somewhat tiring.  But I’m far less shy and quiet than I once was.  Perhaps some people meeting me now wouldn’t consider me that way at all.  Maybe the social demands on me have required a stronger presence.  Maybe character is really something that shifts depending on the situation.

Spectrummy Daddy and our children don’t tend to be quiet very often.  Cubby talks incessantly around his family and friends, but becomes quieter when he is nervous.  When he first started school, his teacher wasn’t sure he was verbal.  His current teacher wonders if he can ever stop talking.

While peace and quiet is a state I relish, when it comes to Pudding, it can mean something is very wrong.  If she is very upset or overwhelmed, she retreats into herself.  It is agony for a mother to see her child hurting without knowing the cause.  Believe me when I say I prefer her meltdowns to be of the explosive kind.  That way we are at least immediately aware of how she feels, and we can do our best to get her needs met.

Quiet Time

So, partly because it seems unnatural for my family to be quiet, and partly because withdrawal is far worse, we don’t make many demands on the children to be quiet.  Little children are seen and heard, expressing themselves and engaging with us.

But there are times when quiet is necessary, and I’ve realized lately that at those times, Pudding appears to be incapable of being quiet.  Recently at a gathering at the Consulate, Pudding was fine until speeches were being made and I asked her to be quiet.  From that point on, she became disruptive and demanding.  Our community is very supportive, but as they were the only children there, I couldn’t help but feel the focus of unwanted attention.

I tried distracting her with snacks.  She would loudly refuse them, or demand others.  I tired distracting her with books, “I’M READING…PUDDING’S READING…I’M READING A BOOK!” and drawing, “PUDDING’S DRAWING A PICTURE, I’M DRAWING A PICTURE, MUMMY DRAW A PICTURE!.”  The more embarrassed I became, the more she acted up.  Eventually I removed her from the situation, and she immediately calmed down.

I knew I was doing something wrong, but I was too close to the problem to figure out a solution.  Yesterday I raised the issue in a meeting with Pudding’s therapeutic team, who immediately saw where I’d gone wrong, and offered alternative approaches.

They suggested looking at the ability to keep quiet, a real struggle for a child with autism and ADHD, as a skill that she needs to learn.  The best time to learn a skill is not in socially demanding situations, but when everyone is calm and comfortable (including me).  Oh I know, so obvious once somebody else points it out!

Pudding is not in an ABA program, but because the intended result (being quiet) is so inherently unrewarding for her, this was a good occasion to use a positive reinforcement approach.  So yesterday we made a game of it with Pudding and Cubby.  We played “Quiet Time” using a one minute countdown on my phone.  If they managed to keep quiet for the whole minute, they earned a pink smartie (imagine a european M&M, American readers).  Pudding managed it twice, but Cubby was the real winner at this game.  I probably need to reduce the length of time to 30 seconds next time we play, and then increase it from there.

It is too early yet to tell if this approach will work, or if Pudding will be able to generalize it to more demanding situations.  But I like to think that this is a skill she can learn, rather than a fixed character trait.  After all, if I can learn to become more forward and resolute in advocating for my children, that surely means that we can nurture the traits in ourselves that are most useful to us at any given time.

So Q is for Quiet.  A handy skill at times, but not always the most essential tool.  The art of knowing when to keep quiet and when to speak out is a skill most of us keep developing throughout our lives.  I’m certain my children will be no exception.

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

Written by Spectrummy Mummy

July 12, 2012 at 10:40 am

P is for Party

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Party.  That word strikes dread into many a spectrummy mummy.  Some of our kids need routines, and a party generally circumvents the expected.  What is spontaneous and surprising to some is terror-inducing to others.  Many of our kids don’t like certain noises, and loud music and crowds tend to make too much noise.  One of my kids likes routines, and they both have trouble with noise, but these days both of them love a party.

So this weekend when we told the kids we were going to a party for Independence Day, they were excited about it.  The trouble was that this party was a little bigger than what we are used to, with 300 people expected to attend.  It was also being held by the Embassy in Pretoria, so we were also unfamiliar with the venue.

We arrived early, which tends to help our kids find a place less overwhelming than when it is already crowded- I know this because I don’t do well with crowds either, but am able to build up my tolerance easier than adjusting to an already packed place.  The weather was glorious for an outdoor event, and the kids enjoyed the fact that there was a playground and bouncy castle to play on.

Pudding even tried something we’d never done before- she had her face painted.  When she was younger there was just no way we could get her to sit still long enough, nor did I have any idea how she would tolerate the feeling of the paint on her skin.  I needn’t have worried- the allure of having a “pinkalicious Hello Kitty” on her cheek turned out to be more than enough incentive to go through with it.

The kids had no problem with the music that was played, but Pudding struggled with the deep voice of the Ambassador over the loudspeaker.  We missed our chance with the balloon man, but managed to avoid Uncle Sam on stilts (another odd phobia of mine).  Now that we are only avoiding peanuts and tree nuts, there was plenty to eat, and both kids had worked up an appetite.  We ate, we played, we parents even networked.  Everyone had a great time.

So, P is for party.  One of the unwritten obligations of my husband’s line of work is that there are certain social functions we are expected to attend.  Pudding attended her first Ambassador’s reception when she was less than two weeks old.  And she slept all the while as she was passed from guest to guest, as I implored everyone in sight to use some hand sanitizer.  By the time she was two she was well experienced in the international social scene.

When we were in the US, we no longer had these obligations, so I tended to only take the kids to events and parties that we had to go to.  Unsurprisingly, without further opportunities to practice being in these situations, the kids’ party behaviour deteriorated.  I understand (believe me, I do!) the desire many parents have to avoid these situations, but for our family it was entirely the wrong move.

The more parties they go to, the more they enjoy them, the better they behave.  And the beauty of a party is that they are supposed to be fun.  So even if the sensory stimuli is different to what they like, or routine has been altered- there is cake, balloons, or a party bag to focus on.  I don’t expect any learning to take place, I don’t insist on complicated social interactions- both of which are necessary in less fun places, like the classroom.

Pudding begins mainstream Kindergarten next month.  It will be a huge transition for her, but her past experiences all work to prepare her.  I’m sure that it will go well.  And if it does, I know just the way she’d want to celebrate- with her very own party.

There are plenty more A-Z posts where this one came from.  Read them all by clicking >here<.

Written by Spectrummy Mummy

July 2, 2012 at 2:50 pm

O is for Onwards

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Onwards.  Moving on.  That sounds easy, doesn’t it?  The truth is, moving on gets easier the more you move on.  There will always be bumps in the road, hitches along the way, but once you start the momentum, it gets easier.  Somehow, bouncing back gets easier the more bounce you have.

A little over a year ago, I wrote this post lamenting that a school wouldn’t accept Pudding.  It was the first time she’d been rejected because of her autism, and I was crushed.

We are about two and a half years from the time Pudding was first diagnosed with an autism spectrum disorder.  In the early days, I wouldn’t have been able to move on from such a rejection.  I’d have taken one person’s opinion as proof that the world will always be an unwelcoming place for my girl.

Even last year, I took that initial rejection as a defeat.  Now…it is a negotiation.  If a school can’t accept my child, they need to say why.  We can find a way to provide support, if they can provide acceptance.  If a school can’t, or if fear of Autism is the only reason for exclusion, it isn’t a place that looks at a child as an individual.  It probably isn’t a good place for any child.  Certainly not for mine.

I’ve been thinking about this as I talked to a friend about how I was beginning to feel uncomfortable in the direction an online support group had turned.  I appreciate that, like the autism community as a whole, this support group is divided.  I don’t expect everyone to hold the same opinion as I do, but I find it increasingly hard to read about autism depicted as a disease.  Or to hear about expensive and untested treatments as the epitome of being a “warrior mama.”

I’m not a warrior.  I don’t need to fight a battle.  We are diplomats, finding a way to negotiate the obstacles that we face.

We can’t expect schools, and society as a whole to include and accept our children, if we as parents aren’t ready to do that as well.  Like many other parents, in the early stages I found my daughter’s diagnosis was overwhelming.  I grieved for the loss of a life I expected to live, and struggled to accept the changes that would come our way.  I was stuck.

But all along, right in front of me, was a child who was always developing, just in a different way to what we expected.  Once I realized that she was moving on- I could do that too.  I didn’t need to hold on to grief.  I didn’t need to find radical ways to eliminate autism from my child.  She isn’t broken, or diseased.  She is human, whole, happy.  She is loved.

Pudding has taught me a lifetime of lessons in her 5 years on this planet, but most of all, she teaches me to keep going.  To let nothing stop us- to always find another way.  Now the very doors of a school that were once locked to us, are wide open in welcome.

There is another way, and we’ll find it together.  We just have to keep moving onwards until we get there.

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

Written by Spectrummy Mummy

May 29, 2012 at 2:37 pm

N is for Nearlytypical

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N is also for neurotypical, normal, and non-autistic.

I’m the mother of two children.  They are both verbal, affectionate, sensitive, intelligent, funny, devious, and have occasional problems interacting with others.  My daughter is diagnosed with an ASD (and ADHD), and my son isn’t.

When he was a baby, and Pudding had recently been diagnosed with Asperger’s, I enrolled Cubby in a sibling study.  From the first session (at 10 months old) they found some small concerns about his development, but he never met the criteria for autism.  He was found, at various times, to have difficulties with joint attention, anxiety, fine and gross motor delays, sensory issues, and low muscle tone.

In the last few weeks, we’ve seen some additional behavioral problems thrown into the mix.  He is becoming more aggressive, both at school and at home.  He isn’t responding well to discipline, and is explosively emotional.  In many ways, he is more challenging than his sister was at this age, and 3 was a tough year for her too.

Interestingly, some of the techniques we used on Pudding, work well on Cubby, and others he rebels against entirely.  He loves a social story, and enjoys routine, as well as being “talked through” what is going to happen.  We’ve had no success whatsoever in trying to modify his behaviour through positive reinforcement.

Whenever I see a study comparing a group of autistic individuals against a control group of neurotypicals, I question if it is as simple as that.  Of course, autism is a spectrum, a diagnostic grouping of symptoms that describe a vast range of individuals.  I only have to collect Pudding from her preschool to witness how vast that range can be, and how severe some of those challenges can present.

But the similarities between these siblings seem to be more evident than their differences.  Cubby is a far more effective at communicating than his sister, both verbally and non-verbally, but she is more socially-motivated than he is.  While he isn’t autistic, it isn’t as simple as describing him as non-autistic, or neurotypical, or even (God forbid) normal.

I’m going to stick with nearlytypical for now.

All this was going over my mind as I couldn’t get to sleep last night.  The sheets were too scratchy, it was too hot for the heavy quilt, but there wasn’t enough weight with just a sheet and light blanket. It was too loud outside, and too light inside.  Maybe one day there’ll be a sensory spectrum.  Until then I might call myself nearlytypical too….though Spectrummy Mummy fits me just fine.

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

Written by Spectrummy Mummy

April 12, 2012 at 2:32 pm