Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘special needs

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

Blocked

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I haven’t blogged since Pudding’s birthday, more than a month ago.  It isn’t for want of things happening.  We’ve been having adventures galore that I need to catch you up on, from meeting penguins in Cape Town, to exploring Scotland.  Pudding has been making strides; learning how to brush her teeth by herself, and battling every kind of hand dryer in both the northern and southern hemispheres until she no longer fears them.  Oh, and I shook the hands of two more presidents.  Such a lot going on all at once.  I need to write about that.

Pudding is writing more than me these days.  From sending her grandparents her first ever email, to wandering around different countries with a pen and paper in her hand, she is writing all the time.

I find it interesting what she chooses to write.  Sometimes she is simply documenting her life around her; she’ll write the names of her school friends, or what she has done that day.  At other times, her writing is emphatic.  Frustrated that her spoken word isn’t being heeded, she’ll write out what she needs us to do.  This morning she was adamant that she shouldn’t be sent to school.  I know how she feels- I’d enjoyed our extended break too.

And now we are back, back in our routine.  Except not really, because it is hard to get back into a routine when you only have 6 months left in a place and you don’t know where you’ll be living after that.

I mean, I got stuck on the fact that I don’t need to buy the kids any more toothpaste, because we’ll leave here before it runs out.  We have more toothpaste than time left here, and nothing in place for after that.  No international school persuaded that inclusion is in fact, the way forward.  The only way, in my opinion.  No team of therapists in place for two kids who need extra support.  

Stuck.  Blocked.  I know how my kid feels.  I tend not to write about the frustrations of our globally mobile lifestyle.  I try not to bite the hand that feeds our family.  But not having an onward assignment at this point is devastating to a family in our situation.  It takes time and effort to set up for our kids’ educational and therapeutic needs, wherever we end up next.  

Still, we’ve proven we can do this, and we’re ready for another try.  Pudding keeps mentioning going to Brazil, so maybe she knows something we don’t.  I’m frustrated, angry, and all out of patience with things far beyond my control, but we’ll get through this like every other challenge we’ve faced: squeezing out one more day at a time.  

Yes, I feel better for writing that out.  That girl of mine really knows how to handle this stuff.

 

Written by Spectrummy Mummy

January 6, 2014 at 4:09 pm

Here and There

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Tuesday was a really hard day.  We haven’t had a break in a while, and I was itching to escape.  I booked a night away at the weekend, but it has been a relentless run of a couple of months without stopping, and one night away seems like too little, too late.

After another draining day at work, I collected the kids from school, and got ready to head back out- Tuesday evening was the back-to-school open evening for parents at Pudding’s school.  No time for dinner.

To say I didn’t feel like going out there would be understatement.  The school is a 45 minute drive at the best of times, and after dark in Johannesburg?  Not so much the best of times.  I try my best to avoid ever driving alone at night.  But Spectrummy Daddy was staying with the kids, and I felt like I couldn’t not go.

Traffic was even worse than usual.  I left at 5:10 to be there in plenty of time for a 6:30 start, but I soon realized it wasn’t going to be enough.  All in all, seven (7!) traffic lights were out on the busy route, and not one of them policed.  I turned on the radio only to hear that the alternative route by motorway was in the same condition.  As day turned to night, and gridlocked in traffic, I felt a growing sense of unease.  My frustrations darkened my mood further, and I let myself go…there.

There is where I imagine an easier life.  Where we live close to family and friends, and I can count on them to give us a break when we need one.  There is my kids going to a local school and growing up with the same community.  There is building a life for us, and living it- not having to do the same thing over, and over, in far away lands.  There is easy.  Here is hard.

My legs were cramping from riding the clutch for so long that I almost missed driving an automatic.  I did my best to avert my curious gaze from the casual prostitution happening at a particular traffic light where I idled for too long.  I wanted to call my husband and tell him I was done with here, with this whole Foreign Service life, but I know better than to use a Smartphone here while driving alone in the dark.

Finally, finally, at just after 7 pm, I arrived at the school.

The Director saw me first, and gave me a friendly greeting on first name terms.  Next I saw the mother of a child who was in Pudding’s class last year.  We hugged, and I started to feel better.  Next I got to check out her new classroom, where she’d left me a note asking to check out her “portit.”

I left her a note in return, then got to check out her new classroom, taking note of the many accommodations. As Ms. A, her new teacher had previously let me know- these supports are actually beneficial for all kids, and having them available to all ensured that Pudding isn’t singled out.  I felt all my tensions slip away.  My girl, she is right where she needs to be.

Next I got to meet Pudding’s art, music, and PE teachers.  I had to smile as the new teachers shifted from polite interest to excitement as they found out I was Pudding’s mother.  That kid really is a rock star, and I loved hearing all the anecdotes: such as Pudding turning on the music in class- the music teacher convinced it only happens when she talks for too long!  Yes, that absolutely sounds like her.

Though it was getting late after a long day, I couldn’t resist popping in to see Pudding’s kindergarten teacher, who was in the middle of reassuring a new parent that her child (who had some differences of their own, but not like Pudding’s) was in the right place.

I couldn’t agree more.

The drive home was just about the complete opposite- I practically flew.  What was I even thinking on the ride out there?  Of course this isn’t easy, but she is where she belongs, and when we move again, we’ll start up a whole new village.

Here or there, it doesn’t matter.  We are always right where we need to be.

Written by Spectrummy Mummy

August 30, 2013 at 11:05 am

First Grade

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First Grade

 

First day of First Grade, complete with social story in her hand.  First day for Pudding, at least- the rest of her classmates started last Wednesday, but we were still quarantined after the operation.  Though I’m anxious to know how her day went, I know she is in good hands.  Her new teacher emailed me to say she’d not only read my last post, she’d pinned it to her wall.

“We are all different and we all learn differently.”

Amen to that.  I’m glad Pudding is back where she belongs.

Written by Spectrummy Mummy

August 19, 2013 at 1:41 pm

Wordless Wednesday 19 Jun 13

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Pudding poses with her glider!

Pudding poses with her glider!

Written by Spectrummy Mummy

June 19, 2013 at 7:48 am

The Autism Dream

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Last Day of KindergartenWork.  Work is busy.  Work is…American.  This is the American Dream.  You puts in hard efforts, and you gets big rewards.  We all buy that, right?

I remember when we first got Pudding’s autism diagnosis (actually, Asperger’s diagnosis, but I’ll come to that) how I thought that we could extend the American Dream to apply to this situation.  The Autism Dream.  I was a new immigrant to this unfamiliar land, you’ll forgive me.

If I worked hard enough, if we did enough therapies.  If we tried this therapy, or bought this app.  If we just put in enough efforts, we’d get the rewards we deserved.

And what would those results be?  TIme has changed my answer to that, like it has so many values I took as sacrosanct.  But back then, I hoped for results and improvements, measurable values that we can find in the world of work, but impossible to apply to my daughter.

Still, I had ambition, and I was prepared to graft.

Then yesterday came the results of our reevaluation, which were at once completely expected, and a shock that has left me reeling.  We need to do frequent reevaluations to apply to international schools and set up our therapeutic programs.  That whole free and appropriate education provided by law just doesn’t apply to us overseas.

And so now we find that the Asperger diagnosis, doesn’t apply to Pudding, and should never have been given to her.

“Her language skills did not continue to develop as expected.”

Rather, she meets the criteria for the new DSM-V Autism Spectrum Disorder, with the following additions:

– Language Disorder, Not Otherwise Specified

-Disorder of Written Expression

-Learning Disorder, Not Otherwise Specified

and maintaing her Motor Coordination Disorder and ADHD diagnoses.  Just words in stark black and white.

According to the American Dream, we would work hard and overcome these obstacles, not face more and more challenges as time goes on.  As happens every time I read one of these reports, I’m heartbroken at the difference between the way we view the same child.

Am I not working hard enough to make things better for her?

Hours after reading this report, I placed my girl on the bus for her last day of Kindergarten, and I saw the contrast I needed from the cold and clinical report.  She made an incredible achievement this year.  She has learned to read and write, advocate for herself, make consistent progress, and graduate from kindergarten.

She has gained the affections and support of her peers and teachers.  She has faced the challenge of a new environment, and excelled there.  She has earned her spot in a school, and a place in the community.  She has made me proud every single day.

And that is The Autism Dream for us.  It isn’t that we can work away her challenges, it is that she can grow and develop and match them.  On paper, she doesn’t look good.  In person, she is incredible.

I’d be lying if I said this was easy.  I’m crying as I type.  But I know there isn’t a report that could be written which could ever capture how amazing this child is.  I know, because I’ve written about her for years now, and I’ve barely scratched the surface of everything I could say about her.

The Autism Dream has never been about changing her to fit in, but revealing this world and our societal standards for the imperfections that they are.  She shows me truth, joy, and love.  She shows me what is truly importantl, and I never want to wake up from that dream.

 

Written by Spectrummy Mummy

May 31, 2013 at 3:50 pm

Letting Kids Be Kids

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You’ll have to forgive my mood in this post.  I have a particularly nasty chest infection.  It hurts when I move, laugh, talk, or- you know- breathe.  Pudding is also home ill with tonsillitis.  She complained about her head hurting at the weekend, and took an extraordinary (for her) five hour nap on Sunday, but since we visited the doctors and got her medicine, she seems back to herself.

With one exception.

Because she had a fever, we didn’t give her her usual medication for ADHD.  Sometimes Pudding is doing so well, I forget what a vital component medication has been for her.  Then we take a break, and I remember.

I remember Pudding before she was five, with a body and brain that seemed to be in overdrive.  And now, even though she is ill, it is just the same.  Her body can’t get the rest she needs to recover.  Her brain is seeking stimulation that she just can’t handle at the moment.  She needs to rest, and that is the one thing she can’t do.

I never wanted to put Pudding on medication.  I looked in vain for another way.  We tried a few ADHD treatments where we felt the side effects were worse than the results, and then made a last-ditch attempt before giving up.  Her particular chemistry found the right match, and the hyperactivity reduced considerably.  It isn’t perfect, she still struggles greatly with attention, but her engine isn’t in overdrive any more, and slowing down just a little has helped her in every possible way.

Honestly, I don’t know if the child who couldn’t sit for even 20 seconds would have been welcomed into a mainstream class.  I’m not sure if the child who skipped through books so quickly that every single one we owned was torn from its bindings would have ever slowed down enough to learn to read, or write.  I know that she finds it easier to get through her various therapies now.  I know that she is able to learn now.  And play.  And swim.  And do all the other things that kids can do.

She may have made this progress anyway, but seeing her these last couple of days makes me think it would have been slower, and harder.  The faster her wheels spin, the deeper she sinks into a rut.

I’m not saying that medication is for every child- far from it.  Stimulants were terrible for Pudding, and a spectrum child seems far more likely to have atypical side effects.  I still want to be the idealist mother who could find another way.  But I know we made the right choice for our kid.  I know that she is happier, feels better, when she can calm herself.

So what really ticks me off, is when I read yet another unscientific article about how ADHD (and sometimes ASD) is a construct of our times.  Sometimes people actually send me these articles, wanting to help, I suppose, but doing quite the opposite.  I can think of a dozen other ways to help other than telling me I’m doing it wrong.  Sometimes I read, sometimes I just delete.  They always read the same.  Parents and doctors don’t let kids be kids, and if we just let our children play outside, or kept them off candy/ computers/ TV, or gave them the right diet/ vitamin/ parental attention they would be fine.  Let kids be kids, and don’t turn them into zombies!

When the truth is- I just want to let my kid to be a kid, that is all I’ve ever wanted.  This is one of many ways I help her to do just that.  I wouldn’t even care about how exhausting her condition is for me, if it wasn’t even worse for her.  There is no magic pill, but if there is something that helps her, perhaps even reduces the risk of harm coming to her, I’m going to keep on doing it.

And if there is anyone who thinks Pudding’s ADHD or her autism aren’t for real….well, they’re more than welcome to come here and get a dose of reality.  Because much as it hurts at the moment to chase around a child who can’t keep herself out of harm, it hurts a whole lot more to be judged for doing it as well as I can.

Written by Spectrummy Mummy

May 21, 2013 at 12:39 pm

Feeling Included

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So today was finally the day.  My nerves have been wracking for weeks as I faced up to the challenge of public speaking.  I’d been asked to participate in a conference on international inclusion, and as much as my instincts have me running away from such opportunities, I decided to follow the example my girl sets me every single day: I got out of my comfort zone.

The conference had started yesterday, but Pudding was down with what turned out to be a double ear infection, so she took priority.  Spectrummy Daddy took today off work instead so I could still do my bit.  I got talking to the lady at the table next to me, a principal of an international school.  Before long she revealed that her daughter is also diagnosed with Asperger’s Syndrome, and now doing really well- not just in college, but spending a year abroad in Paris.  I felt that feeling of connection that we spectrum parents always feel when we meet.  We’re never alone.

Part of the day the conference participants were divided up into groups to see learning support in action, but I wasn’t placed in  group, so I did the “mummy tour” of just the bits that were relevant to Pudding’s education.  I got to check out “Pudding’s office” which is also known as the sensory room.  There I learned how Pudding manages her sensory needs in school (just the same as at home, really) and the awesome Ms. B reiterated how much she loved working with Pudding.

I had a bit of free time, so I sat near Pudding’s classmates as they ate lunch.  The teaching assistant for Pudding’s class was there, and we’d recently discussed how she was hoping to continue as the teaching partner in her classroom next year.  Not only that, but she was fighting with a few other teaching partners who also had their eye on working with Pudding next year!  How far we have come, from schools that wouldn’t admit her and teachers who couldn’t work with her, to a place where she is accepted and loved for who she is.

Next I moved to Pudding’s classroom, where her teacher presented a slideshow of videos about Pudding and how our inclusion project is working out.  The video ended with one of Pudding’s classmates sagely noting that “she learns from us.”  It kind of sums up inclusion in a sentence.  What this little girl hasn’t realized yet, though, is that she is also learning from Pudding.

One of my favourite parts of the day was the student panel.   A group of middle and high school students talked about their experiences of inclusion: the diversity here included South African children on scholarships, as well as those receiving learning support.  These students were incredibly articulate, and could detail the many benefits they received from an inclusive education.  It was a showcase of all that is great about the school, and fascinating to me considering that not long ago some of these kids wouldn’t have even been admitted to the school.

And then it was my turn.  I’d love to say that I conquered my nerves, but that isn’t the way these things work.  I did, however, acknowledge those nerves- it is just part of who I am, and as I neared the end of my presentation, I found that the shakiness in my voice had almost disappeared.  I talked about our experiences- both positive and negative- with special education, I talked about how this school had initially rejected Pudding for pre-K, our conditional acceptance into Kindergarten, and the incredible successes we have enjoyed ever since.

Everyone at the conference responded really positively to what I had to say.  The director of the school hadn’t known that we were initially rejected from his school, and wished to speak to me privately.  He reiterated that the school was developing and learning how to really build a community.  International schools can only really do that when they’re allowing all of us to be part of that community.

It was time to leave, but not before more I met with more educators and faculty members who told me that our story further resonated because they too were parents of children with learning differences.  We are all connected, in some intangible way by our experiences.  Here in South Africa they call it Ubuntu:  a philosophy that can be summed up by ‘I am what I am because of who we all are.’  I think these international schools are going to be whole lot better because of who we all are.  And including us- as parents to speak at conferences, and as children to be educated- is going to make them the best that they can be.

Easy

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I’ve got so much going on this week that I don’t have time to post.  But I’m such an excellent procrastinator, I’ll do just that.  This week, for instance, I’ve got a video conference tomorrow, a cocktail reception on Thursday evening, organise our family to fly out to the states on the weekend, and I need to draft the presentation for a conference upon my return.  Oh, and the thousand other things that I need to do in my job.  But I only work part-time (32 hours a week), so it should be easy.

And then there is the day to day dealing with kids with special needs.  Trying to eke out time with each to put what they learn in therapy to good use.  I’m effectively dealing with three different schools, and two sets of speech and occupational therapists.  Yet somehow I only have two kids, and their needs are comparatively mild, it really should be easy.

I was talking to a colleague today who said I make it all look so ‘easy.’  I had to laugh.  Of all the things my life is…easy would be the worst adjective.

I’m dropping balls, but somehow my juggling act keeps going.  I forgot that one of Pudding’s schools has spirit week this week, and I forgot to dress her up like a movie star on Monday.  Lucky for me that Hello Kitty is a movie star (shut up, she is!) and Pudding always opts to dress like Hello Kitty.

She is helping out in other ways too.  Taking on more little duties as I shirk them.  She has been making leaps and bounds with her reading and writing since starting in an inclusive classroom.  On Thursday Spectrummy Daddy and I will be taking her in to school for a teacher conference in which Pudding will demonstrate her progress.  

One thing I’ve made certain of, even as we get busier and busier, is that Pudding always reads her reading book from school every evening, then I read a story of her choice.  After she has finished, I comment on the reading log sent from the teacher.

I guess Pudding thinks that she’ll save me a job here, because tonight I went to write, and I found she’d already done it.  Her verdict on this book?  Easy.

Image

 

I don’t think any of this is easy, my love, but thank you for always reminding me that it is worth it!

Written by Spectrummy Mummy

February 26, 2013 at 7:24 pm

Wordless Wednesday 30 Jan 13

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Okay, I’m adding a few words just so you can get some context.  This photo, kindly supplied by Pudding’s teacher left me speechless, which is a kind of wordless. 

This morning, I posted this on my Spectrummy Mummy Facebook page:

When it comes to Show and Tell, Pudding prefers to adopt a Don’t Ask, Don’t Tell policy. We’ll see if she wants to explain why there is a Luxembourg flag in her backpack today.

And then her teacher emailed this:

Show and Tell

With these words:

Pudding did her first real show and share today…so cute!

It’s the first time she wanted to go up…I thought it might be a Welsh flag, but she corrected me and told us that it is from Luxembourg. 

Your girl is amazing…just love her 🙂

If you are familiar with Pudding’s challenges, you’ll probably share my joy.  If not, let me tell you that this is the picture of an everyday miracle. 

By the way, yes- she came from Luxembourg, but the really amazing thing is gettting to see where she will go.

Written by Spectrummy Mummy

January 30, 2013 at 11:44 am