Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘aspie

Wordless Wednesday 16 Jan 13

with 2 comments

Yeah, not so wordless.

Yeah, not so wordless.

Written by Spectrummy Mummy

January 16, 2013 at 5:06 pm

Lessons in Asperger’s #1

with 7 comments

Pudding has been swimming with her instructor twice weekly for 6 months now.  I’d be hard pressed to find anyone outside of the teaching profession who so perfectly encapsulates the balance between pushing a child, and being sensitive to her needs.This instructor has a knack for teaching kids who haven’t done well in other swim schools, including other kids with special needs.

Pudding adores her.

I made it clear from the outset that the instructor should feel free to use a zero tolerance policy when it came to not paying attention during the lesson.  Getting distracted could have serious implications in the water, so our alternative was to warn Pudding that if she wasn’t listening, she would have to sit out of the pool.

Of course, Pudding’s neurological mix of ADHD and ASD make it very difficult to maintain her focus all the time.  There are many distractions, both in and out of the pool, which make 20 minutes seem like an awfully long time.  Inevitably, some days Pudding gets put out of the pool, given time to get herself back together, then allowed to swim again.  Her instructor never minds, because it seems like even on those days when it is hard for her to focus, she is swimming well.  Some days she swims well, some days she listens well.  We take either as a good day.

Yesterday, she did both.  She listened to every direction, and followed it beautifully.  For the first time ever, Pudding out-performed her typically-developing peers.  It was one of those beautiful, wondrous days when all the efforts my girl puts in paid off.  And her teacher and I got to bathe in that glory too.

What really made me smile, however, was that after all this time of getting to know Pudding (and other children on the spectrum), there are still some ways in which the instructor is learning.

At the start of the lesson yesterday, Pudding led her friend down the steps of the pool, rather than sitting in the usual place to begin.  Oh my goodness- it was so cute- but not following the rules, so her teacher was forced to intervene, albeit smilingly:

Girls, where are you going?

The other girl stopped in her tracks, and dutifully turned around and returned to sit at the side of the pool.  But I knew, I knew what was going to happen next.  Because I’ve learned lesson #1 in speaking with an Asperger child: Never ask a question unless you want a direct and honest response.

I watched knowingly as Pudding continued on her merry way, only to respond to her teacher:

I’m going down the steps.

We all burst out laughing.  Lesson #1, my friend.  Don’t worry, there is plenty more she has to teach us, just as long as we are always willing to learn.

Written by Spectrummy Mummy

June 15, 2012 at 12:23 pm

Pudding and the Terrible, Horrible, No Good, Very Bad Day

with 10 comments

Yesterday Pudding asked me to read her Alexander and the the Terrible, Horrible, No Good, Very Bad Day.  Pudding likes this book, but it goes in phases for her, and she hasn’t been interested in reading it for several months.  I wondered if there was a reason for her choice….

I went to bed with Daddy in my room and then I woke up and Daddy wasn’t there, and I was scared.  I went to Mummy and Daddy’s room, and they were asleep, so I had to wake them up to get in their bed. Daddy had to get out.  Even though it hadn’t started yet, I could see it was going to be a Terrible, Horrible, No Good, Very Bad Day.

When I woke up it was still dark and there were no birds singing yet, so I had to make noise instead.  Mummy is grumpy, so I keep talking and turning until she cheers up.  Eventually I hear Daddy get up, so I decide it is time to go downstairs.

Daddy wants me to do my therapeutic listening program, but I don’t want to.  I don’t like wearing the head phones, and I don’t want to listen to that music.  I pull the cord out of the CD player and Daddy makes me do it again from the beginning.  I get my pink yoghurt on my Hello Kitty nightgown and I start to cry.  It isn’t even 7 O’Clock, and already it is a Terrible Horrible, No Good, Very Bad Day.

I think next time I’ll move to Australia.

Mummy washes my face and the cloth is scratchy.  She makes me take off my Hello Kitty nightgown to be washed and I don’t want to.  I want to always wear my Hello Kitty nightgown.  She makes me wear warm clothes and socks, when I want to wear a dress and no socks- I could do that in Australia.

Cubby has to get dressed too, but Cubby doesn’t have to go to school.  Cubby doesn’t even have to go back to school until May.  It isn’t fair- I should be able to stay home too.  I tell Mummy I’m not going to school today.  She take me anyway on this Terrible, Horrible, No Good, Very Bad Day.

The little kids at my preschool scream and cry and it hurts my ears.  I tell Mummy I want to go to a different school.  Mummy says she’s working on it, but she isn’t working on it today and I don’t want to go today.  I have to do OT when I don’t want to, and speech therapy too.

I bet I wouldn’t have to do that in Australia.

Mummy picks me up from school and she tells me we have to go to a lab-o-ra-to-ry.  I don’t like it there, they hurt me the last time.  Mummy says she has magic plasters (Band-Aids) so it won’t hurt my arm this time, and puts them on where my elbow is.  I don’t like it.  I try to take them off.  Mummy and my teacher tell me I can’t take them off, but Mummy draws Hello Kitty on them and I like them better.

When we get to the hospital we have to wait for a long time.  The lights are too bright in here, I want to go back outside.  I don’t like to wait, my brother doesn’t like to wait, and my Mummy doesn’t like it when me and my brother have to wait.  Mummy has to write on lots of forms.  I try to draw with her pen, but she doesn’t like that.  Mummy seems angry and I don’t know why and that makes me scared.  I knew for sure this would be a Terrible, Horrible, No Good, Very Bad Day.

Mummy says we have to be good in the waiting room to get a lollipop, but when I try to be good by spinning around and making noises, she thinks that isn’t being good.  Then I go around the room and touch everything, and Cubby copies me.  I don’t know what else to try.  I’m confused, and that makes me more scared.

Finally it is my turn to go in, and I get up on the bed and I am brave.  Now the nurse takes off my magic plasters, but I don’t want her to because she didn’t ask first, and because they have Hello Kitty on them.  I tell her I need a Hello Kitty Band-Aid, but she shakes her head at me.  I don’t know what that means.  The nurse tells me it won’t hurt because of the magic, but then I see the needle, cotton wool, and the little dish thing from last time.  I remember last time and now I’m very scared.  Being this scared hurts me more than needles.  Mummy reminds the nurse again about my awe-tism, and the nurse’s eyes move upwards like they’re going back into her head.  I don’t know why she did that, but it feels like Mummy is more angry.  I can feel when Mummy is angry, even if I don’t know why.  It makes me more scared.

Mummy tells me not to be scared, and says I’m being brave and will get a lollipop for sure.  Mummy also tells Cubby he can have one, but I don’t know why because he isn’t brave and anyway he’d better not get a pink one.  Mummy holds me and talks to me about going swimming.  I love going swimming, and soon everything is done and I’m not scared any more.  I get a lollipop, and it is pink.

We go back to get my things for swimming and on the way Cubby is talking about how he and Mummy went to one of my places while I was in school.  I hit Cubby, but I’m the one who got into trouble.

I’ll bet that kind of thing doesn’t happen in Australia.

When I’m getting changed I have to stand on one leg and I fall down.  My class for swimming has been changed and now it is all boys instead of girls and boys.  I don’t like this and I get mad, but Mummy says I have to calm down if I want to go swimming.  I do want to go swimming, but I’m still mad, so during the lesson I keep undoing my costume and telling everyone, and showing my galou-galous.  Mummy says after that she is glad Daddy wasn’t there.

Mummy says it is cold outside, and even though she cut off all my hair when she didn’t like the way I cut it, she makes me use the hair-dryer.  I don’t like hair-dryers, not on any day.

We go home and have dinner, and I get ready for bed, and it is almost the end of my Terrible, Horrible, No Good, Very Bad Day.

If I think about it though, they probably have hair-dryers in Australia, because I’ve lived on three continents and things don’t change as much as you’d think.  I ask if we can read the Alexander book.  Mummy is looking at me strange, and she asks me what was my day like.  I’m not sure what to say to answer her, so I tell the truth:

“Today is Monday, Mummy.”

Mummy smiles and tells me that it is.  And gives me a cuddle, but I can’t go to sleep unless she stays in the room with me.  I hope she is there when I wake up again…..

Written by Spectrummy Mummy

April 17, 2012 at 1:42 pm

Will she ever get better? (Guest post by Lollipop)

with one comment

Today I received the following email, and the sender kindly agreed to my posting it here for us all to read.  I’m sure many of us have been asked this question, and many of us have been stumped for a response.  Tell us in the comments what you would say.  Over to Lollipop:

______

I’m a mother (married, American expat living in London for the last 20-odd years) of a 9yr old girl with PDD-NOS, sensory processing disorder, & semantic pragmatic language disorder.  She’s social, verbal (more verbose), she’s fun & funny, affectionate, a drama queen, she has a fantastic ear for music, and she’s mad about cats & just about anything pink.  Miss E attends a wonderful mainstream school, though the bulk of her day is spent in an ARP for SLCN (Additionally Resourced Provision for pupils with Speech, Language and Communications Needs). Miss E’s lucky, she has all the SEN support she needs, though it’s taken two tribunals, a High Court appeal, and finally moving across London to achieve it.

So much of your blog resonates with us (my husband also looks forward to each new entry), thank you for sharing your experience.  Even when we know we’re not alone, somehow it helps just seeing we’re not alone.

Something my mother had said recently has also been echoing around my head.   “Would Miss E’s differences ever be behind her?”  In other words, would she ever get better, would she ever improve so dramatically that her quirks were unnoticeable.  Unspoken was the question of whether Miss E would ever be fully able to cope on her own.

So.  There it was.  The question.  Mom had probably been just as worried about how it might be received as how she might be perceived for having asked it.

It was an innocent question.  And rather than any wish that Miss E were any other way or anything other than her very own wonderful self, it was a question absolutely laden with love & stemming from a genuine desire for life to be less of a struggle for Miss E (and by extension us, her parents).

If we suspend the now well-honed defensive reaction, and if we can set aside our own inner-voiced niggles & fears to be completely honest with ourselves, I suspect it’s actually a question all parents of kids with special needs will have wondered at some point.

In answering my mother, I dimly recall saying something to the effect that autism (even high functioning) isn’t something outgrown, that it’s a lifelong neurological impairment, but that the clinical picture grows & changes & improves along with the child as it grows & changes & matures.

Almost immediately, I realised that probably didn’t say much to someone who wasn’t as familiar as I am with all the medi-speak.  The moment had passed and I’d failed to give an adequate answer.  I’m sorry, Mom.

If I had a do-over, I might say:- “Miss E will always, always have challenges, Mom, it’s a matter of degree.  We fully expect Miss E will one day live a productive & fully independent life, though she will always, always perceive life a little differently – and that’s no bad thing in & of itself.”

What we know is that the more coping strategies we can give our kids now at a young age, the easier it will be for them to begin to rely on these as second nature.  Each coping strategy becomes a stepping stone for the next, and the next, so that a once blocked path to, say, socialisation, gradually becomes accessible or more accessible.

With my stepdad, I simply shared a favourite autism witticism:-  “Autism…It’s not a processing error.  It’s a different operating system.”  Although he adores his granddaughter just exactly the way she is, this seemed to open up a fresh perspective for him.  Sometimes, often, that’s enough.

Written by Spectrummy Mummy

March 1, 2012 at 7:16 pm

Autistics Speaking Day

with 9 comments

Today is Autistics Speaking Day.  Autistics Speaking Day is about speaking out and being heard all over the world.  Please click >here< to find the collection of posts by advocates and allies at The Thinking Person’s Guide to Autism.

As an ally, I’m taking a day off from writing a post to share my collection of Facebook updates featuring the inimitable Pudding.  If this isn’t enough, <here> is another post featuring the language of our resident Aspie.  My wish is that one day she’ll be a proud advocate and member of a collective who won’t be silenced.  Until then, I still think she has much to say…

  • Pudding has a crush on an older boy at school. Merely mentioning his name makes her cover her eyes, coyly. I asked her what he is like to figure out her type.
    “He is like babies, with a Hello Kitty head.”
  • Making toast for breakfast, I ask Pudding if she wants jam. She doesn’t. To clarify things…
    Me: Do you just want butter?
    Pudding: No, I want toast and butter.
  • Following a paint incident, I let Pudding wallow in the bath as long as she needed. After half an hour, I asked her if she was a mermaid. “No, Mummy, I’m a girl….and a fairy.”
  • I forgot how many toys the kids have. WAY too many now that they’re sharing a room and we don’t have a basement. A local orphanage will shortly receive a very big donation.
    Me: Pudding, do you like having all your toys back?
    Pudding: Yes….What is Santa going to bring?
    Me: AAARRGHHH
  • Pudding: “Ooh, my hair is all windy.”
  • Daddy: Pudding, what did you do at school today?
    Pudding: No!
    Dadddy: No is not an answer.
    Pudding: Yes?
  • Pudding: “The sky is very high, Daddy.”
  • Me: Kids, put your toys away.
    No response.
    Me: I’m running out of patience.
    Pudding: You need to get some from the store.
  • Me: We have to think about what you’re going to wear to school tomorrow.
    Pudding: Clothes.
  • Last night Pudding was coughing and sneezing.
    Me: Are you sick?
    Pudding: No, I’m not sick.
    Me: Have you got a cold?
    Pudding: No….I’ve got a warm.
  • Pudding was “driving” around the house with the GPS (that I mentioned in yesterday’s post). She came to sit down next to me and said: “You have reached your destination.”
  • “Goodnight Mummy, see you on next tomorrow.”
  • Me: Do you like your new Hello Kitty bubble bath?
    Pudding: Yes, it smells like cats!
  • I bought a buttercup cake pan this weekend, and Pudding was so enthralled that she made up a story for it. Here it is word for word: “One day Mummy made a flower cake. The End.”
  • Pudding on the royal wedding: That’s not a princess. Turn it off! Want to watch Sesame Street!
  • Me: Tomorrow is Easter.Pudding: Shall we make a birthday card for Easter?
  • Me: Pudding, what are you doing?
    (Sound of water being poured)
    Me: Don’t tell me that you’re pouring again!
    Pudding: I’m not pouring…

>Here< is the post I wrote last year about the importance of social networking, speaking out and being heard.

Written by Spectrummy Mummy

November 1, 2011 at 1:40 pm

Santa’s Little Helper

with 16 comments

She’s making her list, she’s checking it twice.  It doesn’t really matter if she’s naughty or nice, Santa Claus is coming to town.  In Pudding’s world, we’re gearing up for Christmas.  Never mind that this is only September.  Never mind that we’re moving from Spring to Summer here in the Southern Hemisphere.  The last thing I feel is Christmassy.  But that matters not at all to our heroine.

At the weekend she declared: “It’s Christmastime.”  And that is all is takes.  For once I’m glad that our belongings haven’t arrived from the US yet, because if she found the decorations, no doubt our house would resemble a grotto within minutes.  Last year I got the tree up the week before Christmas, and that was plenty for me.

The thing is, Pudding is right about making these preparations.  We now rely on Pouch mail services, which is sporadic at the best of times, and a nightmare leading up to the holiday season.  A couple of weeks ago we were sent an email telling us that we should make sure we order everything in the next couple of weeks to be certain we’ll have it in time for Christmas.  Oh dear, not going to happen.

At least Pudding is prepared.  She has a very long list that she wants Santa to know about.  I think she sensed our unease, and looked for other ways to reach the man in Lapland.  She found it, in her grandparents.  Pudding opens up Skype on the computer, and calls her grandparents, not minding such things as time zones.  Here is a typical conversation:

Pudding: Hello, hello, hello?  Hello….

Grandparent: Hi Pudding, is that you?  Where’s your Mummy? [It is about 5 am here, lucky we love you]

Pudding:Hello….Hellooooo  [Pudding will ignore any interruptions to her carefully planned monologue, these people are amateurs!]

Grandparent: Yes, hello to  you too Pudding.  [There you go, much better.]

Pudding: What’s Santa gonna buy for you? [A little pronoun reversal between family. Not to be interpreted as an interest in your Christmas wishes, oh no.]

Grandparent: Well, I don’t know, Pudding!  Tell me, what is Santa going to bring for you? [Good, Grandparent, you’re playing properly!]

Pudding: A toy Hello Kitty.  A toy Abby Cadabby. Some clothes for Kelly doll. A buggy for Kelly doll. A high chair for Kelly doll. A pink castle. A Hello Kitty nightgown. A wand. A pinkalicious dress…..

In the same order, every time.  It doesn’t matter which set of grandparents, she has determined that they have an ‘in’ with the jolly old fellow, and she is going to make the most of it.  You may have noted that Santa buys presents, according to Pudding.  She is unimpressed by my talk of elves and workshops.  She wants nice new shiny things from toy shops.  Preferably wrapped in pink.

Never one to miss a chance to exploit my girl’s wishes, I came up with a plan to help us suffer through this eternal Christmas countdown.  We’re going to make a big list, and bedazzle the heck out of it with winter stickers (ooh, fine motor delights) and glitter glue and all kinds of things.  When she earns a reward, she can add to her list.  But here is the thing- she must add to it.  She can use those infuriating kiddy scissors and paste a picture, or she can learn to write the new words, but that list will be her own work.

This year, Santa is managing car repairs and medical bills galore, he is going to make sure she earns everything on her list.  He is going to have his work cut out getting all the way down here on his sleigh.  Even if he does have a couple of sets of elves suckered in on either side of the Atlantic.

Written by Spectrummy Mummy

September 22, 2011 at 11:14 am

Buy one…

with 13 comments

Last week we returned to the hospital for the results and recommendations following Pudding’s reevaluation.  As you may recall, I was worried leading up to the appointments, but managed to reevaluate my own perspective for the actual testing.  Spectrummy Daddy was going to stay at home with the kids, but at the last minute decided we were all going.  I think he thought I as perhaps less calm than I appeared, but I reassured him.  She already has been diagnosed with an ASD, a lifelong condition, nothing is going to change that.

Actually, we do know that some individuals who meet the criteria for an autism spectrum disorder in early childhood no longer do so in subsequent evaluations.  It seems like early intervention can be incredibly effective for some children.  Other children receiving the same services, however, do not make the same improvements, and we don’t know why that is.  We know that therapy is essential for all children, but we can never tell how much progress will be made.

Pudding is in an intensive ABA/VB based preschool autism class.  She also receives private speech and occupational therapies, and we work on developing her skills at home.  We’ve seen her make progress in many respects since her diagnosis.  And yet, we’ve seen new difficulties emerge at the same time.  I knew we weren’t going to be one of the families to be told that their child no longer has autism.  At the same time, I’ve come to terms with Pudding’s differences, indeed, they are part of what makes her so special.  My job is to ensure that she has the best program for her that we can provide, which begins with accepting the diagnosis, and adopting the advice that we had come to hear.  We do the best we can with what we have.  So now let’s see what we have.

The psychologist began by confirming what we suspected: she does indeed still meet the criteria for ASD, and Asperger’s Syndrome is still the best fit for her (until the DSM-V gets rid of that diagnosis).  Her overall language scores were higher than average (pragmatic language of course being the exception).  The rest of her learning profile was very erratic, and in some instances, she performed comparatively worse than she had in 2009.  However, at the same time, she did better at the tests measuring ASD.  She is still an aspie, but less so than she used to be.  Right.

There was more.

She now meets the criteria for ADHD, and the doctor feels that her problems in this area go above and beyond the attention problems associated with Aspergers.  It is possible to have Asperger Syndrome and not have ADHD, but that is not the case for Pudding.  Okay.

There was more.

She also acquired a diagnosis for Developmental Coordination Disorder (also known as dyspraxia).  Her fine and gross motor delays going beyond what would be expected with an ASD.  Well, if you’re sure.

There was more.

One last diagnosis of a Sleep Disorder.  We’re done, right?  Right.

Well, she has to be monitored for non-verbal learning disorder, as she is skating close to the edge of picking up that diagnosis too as she gets older.  I’m only surprised we didn’t gain an anxiety diagnosis there too while they were handing them out so freely!  Buy one, get three free.  The deal of the day, if shopping for diagnoses.

The doctor strongly felt that each of these issues are profoundly affecting her ability to learn and benefit from the therapies and services she receives.  So we need to look at each diagnosis separately to see how it impacts her and what the best overall treatment will be.  We have a lot of recommendations for her program, so now my job is to put the program together for South Africa.  That is the very definition of easier said than done!

She left us with the wise words that just like the first time we met, and Pudding was still our girl- not the diagnosis- so she remains today.  Even if we’ve added a few more diagnoses to the mix.

That is my girl: always a little more than we’d bargained for.

Written by Spectrummy Mummy

May 12, 2011 at 7:18 am