Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘development

In Her Own Time

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We have another milestone, friends. Pudding is learning to tell the time. Pudding had no interest in learning how to tell time for…well, for some considerable time. We’d tried using her special interests, visual timers, crafting our own clocks, workbooks and ordinary telling time books, toys, apps, and any possible thing I could think of.

But it wasn’t her focus. I was looking at seconds, minutes, and hours, and Pudding was more fascinated by days and months. While I was busy in the details, Pudding once again took me by surprise and approached time from another angle.

Last June we met with a new doctor. Pudding asked him his birthday (and will now always remember it), and then she let him know what day it fell on. And then surprised us by knowing every date we asked her. She appears to have an exceptionally accurate mental calendar (and seems equally frustrated that the rest of us don’t!).

So now, days and months not only had meaning, but were meaningful to her. We add our activities to the calendar as much as we can.

But language, as always, was still confusing. As we cuddled in bed at the end of the day, Pudding would ask, “What are we going to do today?”

So’d answer that we would do nothing more today but go to sleep. And tell her what to expect for tomorrow, as much as we ever can.

One day last month, Pudding rose in her early-bird fashion, and reminded us that she was going to a party. Ah yes, I told her, but not yet, not for a long time. Later. At 3 O’Clock. 

And for some reason- that may or may not have to do with delicious birthday cake- this time, she wanted to know more. I’d show her my clock and tell her when the little hand was counting down the hours…8,9,10,11,12,1, then, 2, then time to go.

We found a Hello Kitty watch that happened to have hands with different colours. She wanted to wear it, and would answer when I randomly asked her the time.

This week, Pudding was finding school tougher than usual.  On Monday I collected her earlier, but after that, I asked her aide to use this new tool of time to help her get through the day. I’d remind her that I’d be there at 1, and she could see on her watch how close that would be. Her anxiety dropped away, and she could once again focus on her schoolwork. Not with ease, but with practice.

This incredibly useful tool that gives her more control to navigate her day independently. She doesn’t have the precision yet with telling time that she does with knowing dates, but I know we’ll get there soon. As useful as it is, this isn’t a milestone that could be hurried along the way. But like all the others, we’re getting there in her own time, in her own way. And not a second, minute, or hour before we need to.

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Written by Spectrummy Mummy

February 26, 2015 at 5:31 pm

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<.

 

Written by Spectrummy Mummy

September 5, 2014 at 3:05 pm

Daydream Believer

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Cubby was sharing with me about his day at preschool. They’d read Mr. Daydream, one of the Mr. Men books, and he was confused as to what a daydream was. I came up with some kind of explanation, painfully aware that I seemed only able to describe such an abstract concept in terms that were just as confusing.

By way of demonstrating that he got it, he let me know about a few things he daydreamed about…his birthday, going into space, being a fighter who fights for sport(!), and so on. Yep, he got it.

Then I turned to Pudding, and tried to engage her in the conversation. I wanted to know what she daydreams about. This has a 50/50 chance of success these days. The topic must be of interest to her, and she must be in the mood for talking. Her receptive language is undoubtedly better than her ability to express herself, but on abstract topics, there is less of a chance of her understanding.

I really, really did want to know what she daydreams about. So I waited. I gave her the room to decode my words, then decide if she wanted to respond, then figure out how she could respond. Barely a few seconds, but a length of time that still feels unnaturally long for someone without these challenges.

And then she gave her response, and as always- it was worth waiting for.

I daydream about bake sales.

Because she does. She was thinking about the boy scout doughnuts for sale at school that week. This girl loves her sweet treats, and they were on her mind. Even this most simple sentence is years in the making. It has taken effort on her part, patience on mine, many sessions of speech therapy, and even more time.

But it was worth it, because finally, if I want to know what is on my girl’s mind, I only need to ask. And I’ve been daydreaming about that for years.

Written by Spectrummy Mummy

April 3, 2014 at 5:51 am

Typically Developing

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The words I most often use to describe children who aren’t autistic are ‘typically developing.’  It feels a bit absurd to say, and oxymoron for sure.  All kids develop differently, though some more than others.  But I haven’t come up with a better term yet, so we’ll stick with that for now.  

Pudding doesn’t pass as typically developing.  She is much taller than most kids her age, so her development seems even more out of step than with other autistic children.  She is a happy, hummy, whirling dervish of a child, and so far, hasn’t voiced that she notices her differences.

But her peers have.  We attended the birthday party of one of her classmates this weekend.  They were a lovely family who I met for the first time that day.  The party was at a ziplining activity center.  I was in two minds about going.  I knew Pudding would struggle with the necessary motor skills, but would want to go to the party to see her friends, and eat cake (she is my girl).  We arrived early and couldn’t find where to go in the chaotic mass of people on a busy weekend.  The birthday girl found us, greeted Pudding, and didn’t seem to mind not receiving a response in return.  She took Pudding’s hand and led us to her family.

More friends arrived, and it was time for the safety lesson before the kids took to the trees in the safety harnesses.  But Pudding wasn’t interested in the safety lesson.  She was dancing around and signing her own songs.  I tried to demonstrate how she would have to latch on her harness clips to the appropriate places, and her hands just weren’t strong enough.  I knew it wasn’t going to be safe for her.

The course is suitable for three year-olds and up, so I persevered with the efforts, and let her keep trying.  Then one by one, other kids tired of waiting, and skipped ahead in front of her.  First kids from her class, then younger ones.  I felt that all-too familiar heartache of watching a typically-developing three year-old master something that was incredibly challenging to my girl of twice their age.  

Soon Pudding got too frustrated, and started trying to take off the safety harness.  I asked if she wanted to sit down, and she told me she did.  Pudding has tried a zipline before, a much simpler effort with no harnesses and attachments, and I watched her fly through the air with glee on her face, so I could feel my eyes stinging that something she would love wasn’t accessible to her.

I asked a staff member to help her out of her harness, and he tried to persuade us to change our minds, convinced she was simply afraid of heights.  He volunteered to go with her up in the trees, dismissive of my response that she wouldn’t let a strange man anywhere near her.  

I began removing the harness myself, frustrated at being unable to communicate our needs with this man.  And suddenly I realized it wasn’t just Pudding’s needs I had to accommodate, but my own.  Every fibre of my body now desperate to flee this place where everyone else was having fun, and we didn’t belong.

***

Cubby does pass as typically developing.  He is verbal, with just some minor articulation problems.  His body moves almost as well as other kids his age, and certainly better than his sister, though he is two years younger.  Unless you spend a long time with him, you won’t know that he tires quicker than others, that he is a little more floppy, that he can’t write his letters.

You can have a conversation with him, and he’ll pass for typically developing, until he gets on to one of his areas of expertise.  You might be able to name all the planets, but he’ll tell you how many moons there are, or the name of the third man on the moon.

You might walk into his preschool to find him playing quite typically with the other kids, unless it is raining outside, or the class has moved, and he is curled up in anxiety.  Then he doesn’t quite seem like the rest of his peers.

***

But when they are together, they are oh so typical.  While we revel in being our unique selves, and aspire to nothing but the freedom to do just that; it is sometimes glorious to watch their relationship develop like almost every other sibling set we meet.

Today in the car, I gave Pudding some mints, and told her to share with her brother.  And she did.  She found a mint that was half the size of all the others in the bag, and served it to her brother.  He whined and hit her.  She hit him back.  He told on her.  

And I smiled.  And then threatened to take back the mints if they didn’t behave themselves.  I’m not perfect.  I wouldn’t even say I’m typical.  But as a parent, I’m always developing.  I’m going to feel the crushing lows of things we can’t do, just as much as the soaring highs of what we can.  This is how we develop.  All of us.

 

Written by Spectrummy Mummy

October 24, 2013 at 7:02 pm

Independence Days

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Pudding is a child who was born knowing her own mind, and just waiting for her body to cooperate with its orders.  She has some real struggles with her motor coordination, but I know one thing about her- if she can do something, she will do it.  She was born independent.

Sometimes I have to persuade her that she needs help.  I have to wait patiently as she struggles until I’m allowed to assist.  If you’ve read anything I’ve written before, you know that patience is a work in progress for me.  Somehow we get by, and her fierce determination means she gets to be just as independent as she wants to be.

Cubby, on the other hand, has never been one for independence.  This kid loved being the baby, and was quite content to remain that way.  Whereas Pudding’s limitations are hurdles, Cubby’s are more like barriers.  He has always needed some persuasion to move forward.

But things are changing.  Earlier this year he decided he was ready for toilet-training, and that was that.  He is starting to dress himself, and get better about feeding himself. As all the skills he has been learning in occupational therapy start to come together, he is finding he actually has a use for them.

And then Pudding- always one to go it alone- has become more clingy.  She began refusing to go upstairs or downstairs without me.  Then asking me to go with her to the bathroom.  Other times she doesn’t need me at all.

Sunday was Mother’s Day in South Africa, but Cubby let me know that tough guys don’t do cuddles.  Later that morning it became evident that tough guys do still scream and pound on the bathroom door if their mummy needs a shower.

Both kids seem to be in an ongoing battle, and I suppose that is this thing we called childhood, mixed with a dash of disability.  And I’m in this ongoing battle between holding back and offering support.  I suppose that would be motherhood, mixed with a dash of disability.  Somehow we muddle through together.

Last night I tucked Cubby into bed in his new flannel sheets (we’re moving into winter here).  They were so soft and cuddly, he told me he didn’t need me any more!

And so, as we muddle through these Independence Days, I find I’m not needed in the same way, or as much as I’m used to.  I need to adjust too.  But on those days when I still need to be needed, I just sit at the computer and try to write a blog post.  

It works every time!

Written by Spectrummy Mummy

May 14, 2013 at 5:10 pm

Lies Cubby tells

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Pudding is a mostly truthful person.  She has told a couple of lies, so we know she can lie, but she just doesn’t seem to see the value in untruths.  Perhaps that is another hidden virtue of her autism diagnosis.

Cubby, on the other hand, just loves to lie.  In fact, he rarely tells the truth.  For the most part, they are so outlandish that we aren’t fooled for a moment.  Here are just a few examples:

I speak Polish.

I’m a Chinese person.

Pudding hit me.  (She wasn’t even at home).

I have a baby in my tummy.

Mummy, do you remember when the elephant squashed me?

I fell down underneath a elevator.

I just got back from holiday in Cape Town (we’ve never been).

I killed Mummy.

Daddy is NOT Batman!  (This may be true).

I don’t want chips.  (Spoken with chips in his mouth).

So, just suppose there were some Oreo-style cookies, and Cubby walked in with this face, you might have known better than to ask him if he’d eaten said cookies:

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Don’t worry, he assured me he hadn’t touched them.  And he has such honest eyes!

Written by Spectrummy Mummy

May 3, 2013 at 4:37 pm

S is for Sharing

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It has been a while since I updated my A-Z series. ‘S ‘gives me a wealth of options. Sensory. Spectrummy. Science. Smart. Siblings. Special. Safe. Stigma. Shame. In one way or another, I’ve touched on all these topics. And I’m not done yet, I could go on. But most days, I wonder if I should. Is 484 posts enough sharing?

Our personal lives are so intimate, the rest of the world can be so judgmental. What right do I have to try to understand and explain somebody else’s neurology?
As Pudding grows and develops, she is expressing more of herself, and I relish every morsel that she shares with us. It reminds me of falling in love, every day.
Yesterday my kids begged me for treats after dinner. I guess I’m a sucker (I could do a whole ‘S’ post on how I’m that word!) and Daddy was working late, so I surrended (yep, that would be an ‘S’ post for me too).
Cubby wolfed down his treat in seconds. Pudding decided to savour hers. I was reminded of myself at her age, perhaps even myself now. She took each chocolate and rolled it around in her hands. She smelled it, she tasted it. She held it in her mouth, moving it around to draw out every bit of flavour before eventually swallowing.
Sometimes she too will race through an experience like Cubby. Other times she will dwell far longer in the moment, extracting every detail and reveling in all her senses.
I remember being a little girl and eating the same sweets, and feeling the contrast of the crispy candy shell and the smooth chocolate inside. I remember how my hands would stain with colour from rolling them around in my palms. I remember being just like her, at times.
I also remember having brothers who would have eaten their share long before me. Cubby was in this position now. He’d finished all his, without sharing, and wanted hers. I watched what happened.
Unlike my brothers, who were older and bigger than me, Cubby is at a distinct physical disadvantage when it comes to his big sister. He can’t force her to give them to her, and she can certainly retaliate if he takes them from her.
A year ago, Cubby wouldn’t have realized this. For him sharing would have meant taking what he wanted. I’d have to hover constantly to make sure that Pudding’s swift justice wasn’t too brutal. Pudding had to learn that her sibling (and by extension, other children) would take things that belonged to her. It compromised her sense of fairness, one that the rest of the world doesn’t seem to employ.
Cubby certainly doesn’t. He knows he had his share of the treats. Now he is a cunning predator who knows how to manipulate his sister into sharing some of hers.
He uses Pudding’s sense of fair play against her, reminding her that “it is nice to share” and that he doesn’t have any and she has lots. It works, and she divides them up, reminding her brother to say thank you, before letting him know he is welcome.
There are lessons learned as these siblings interact which I couldn’t begin to teach on my own. I wonder if Pudding will learn that her brother is tricking her- applying rules that he doesn’t obey himself. I wonder if she’ll learn one day to apply rules in certain situations only when it suits her. Like her younger brother.
I remember when I was 16, and it was the first day of my English class in 6th form college. I had a bag of cookies, and offered them to my new friends, sitting on either side of me, as social convention dictates. Then, knowing that it wasn’t expected in an English classroom of strangers, I went around the rest of the class and offered them a share too. I got more questioning looks than people taking me up on a cookie. It seemed ridiculous at the time, and is still does now. All of us too stifled by unwritten rules that we’d all forgotten that it is nice to share, and even nicer to get an unexpected treat!
I wonder if she’ll learn the rules, and mostly follow them, but at times be so sick of unnecessary convention that she breaks them just because she can. I wonder if she’ll feel stifled by expected behavior, and revel in mixing things up, in her own little way.
Then I think about her staying just as she is. This delightful little soul with her uncompromising sense of justice and fair play is exactly what she is supposed to be, and what a world it would be if there were more like her.
Ultimately, I hope she’ll share herself, just as she is, with the whole world, instead of trying endlessly to fit in with what is expected. I know those are the times when I really feel like I’m sharing myself.
I’m writing about sharing, because just as I share these stories about my children, I’m always sharing something of myself too. The more I try to understand and explain my child’s neurology, the more I understand of myself. I just can’t do that any other way.
And it is nice to share, just don’t expect me to give up any of my imported Galaxy chocolate!

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

Written by Spectrummy Mummy

February 21, 2013 at 10:17 am