The only cure for back-to-school anxiety...a Daddy cuddle.

Our neighbours (and friends) have been away on R&R travel for the last few weeks.  In a clear case of out of sight, out of mind, this has passed without comment by either child.  I was a little surprised that Pudding, in particular, never questioned their whereabouts.  One of her favourite things is “feeding the bunnies”, which is actually a nefarious scheme by Pudding to explore their home and garden, with the most cursory of visits to the actual rabbits.  The lady of the house, Ms. M, very generously accommodates these inspections by Pudding, but we hadn’t seen her since the family returned from their trip.

Cubby: That’s Ms. M’s car, Mummy, she’s back!

Pudding: I want to go see her.  Want to go see Ms. M.

Me: Well, we can see her on Friday- she is having a party and we’re invited.

Pudding: She needs a cake, Mummy, Hello Kitty cake.

Cubby: And candles too!

Pudding: She needs a present, Mummy!

Me: It isn’t a birthday party, just a party.

Pudding: She needs a present, Mummy!  The best presents of all come from the heart.*

*Yep, this is echolalia- a line from a Little People DVD.  Fisher-Price includes one of these with their Little People toys- a horror of claymation and nonsensical storylines masquerading as entertainment, offering a smug moralistic message at the end of every irritating featurette.  The kids, of course, adore it.

Not for the first time, I’m amazed at how she makes the most of things.  She has this incredibly challenging way of learning language, but she manages to memorize a snippet, filter it, store it, and then reproduce it in an effort to communicate on our terms.  Playing it back from the heart.

The best presents of all come from the heart.  Damn…we’ve watched so much Little People that my post has turned into an episode, complete with smug moralistic message at the end.  Now all I need is to start singing the theme tune in an Aaron Neville voice.  Come to think of it, that would make the perfect present for Ms. M at her party…

This had to be our project over the summer holiday.  The problem is, I’m not the strongest of swimmers.  My own techniques aren’t so great, and it took me a really long time to learn how to swim.  I wasn’t going to be the best teacher.  And Pudding, with her attention problems and sensorimotor challenges, isn’t the easiest of people to teach.  Fortunately, I found a children’s swimming instructor nearby who is also a physiotherapist- a perfect match!  Unfortunately our schedules only permitted four one-on-one sessions.  Still, I hoped to pick up tips from her that we could use at home, now that it is hot enough to go swimming outdoors.

Pudding took to her new teacher instantly, but still had huge problems following her directions and resisting her impulses.  We agreed the most important (and most difficult) task, was to tackle these challenges, by playing to her strengths.  Pudding likes songs and has a great memory, so her teacher adapted rhymes like Humpty-Dumpty to promote safely getting into the water.  By the end of the first lesson, she could doggy paddle a very short distance unaided, and was learning to wait until told to enter the pool.  Okay, she wasn’t so good at that part.

On the second session, Pudding had no interest in repeating her efforts from the week before.  Somebody had found her buoyancy, to our delight!  She adored the feeling of floating on her back, but her vestibular issues kept her from leaning far enough back.  This time her teacher used Pop Goes the Weasel to flip from her front to her back, and then back again.  Things were starting to come together!

That same week we went on an overnight trip to a man-made beach resort/water-park called Valley of the Waves.  Apparently half the country had the same idea.  It was packed and crowded, so instead of relying on her developing water skills, I put Pudding back in her swim vest.  By the time we were all getting swept off our feet by six foot waves, I was glad I made that call.

However, when we returned for her next lesson, she couldn’t find her buoyancy.  The artificial support of the swim vest interfered with her ability to sense when she was floating.  But then, when were we ever discouraged by taking a step back?  (Don’t answer that one).  We moved on to the challenge of submerging her head under water, a task we were able to reproduce every evening when she took a bath.

Wednesday was her last one-on-one lesson.  We’ll move to a small group class with other children with disabilities from next week.  She’ll also be going back to school next week, and I’m not sure how she’ll cope with extra distractions at the end of a busy day.

I knew it was time for me to take that leap off the diving board and continue working on things at home.  That day, while Cubby was taking a nap, we went in our small pool at home.  Just like with her teacher, we practiced all the components, using the same rhymes and rules for safety.  She sat by the side of the pool until we sang the song together to enter.  We played Finding Nemo with the poor old bath toy who no longer floats.  I was more comfortable teaching her, as she was learning.

Then it happened: she swam, unaided, the width of our pool!  She did it again, and again.  We’ve been in that pool together every day since, and she grows stronger every time.  She is a long way from using breaststroke or front crawl, but believe me when I say she has her own grace.  She might have needed a little extra support, and I might have needed to learn how best to give it to her, but this is another huge thing crossed off that list of things she can’t do.  A list that grows shorter every day.

The mermaid swims, which means I can breathe a little easier.

That post was one of the most commented on, read, and shared posts I’ve written in a while.  I’ve noticed a trend: when I just share what I’m feeling without worrying about how I make others feel, especially when it is ugly and brutal, I feel supported and protected by you.  It is taking off the mask of normality, and being loved for the scarred and savage being that hides beneath.

When I became a special needs parent, I felt myself disengage from friends and family.  And I felt some of them distance themselves from me too.  I had no idea how to put my overwhelming, and often conflicting feelings in words.  How could I communicate, when I suddenly spoke a different language?  The more I kept quiet, the more isolated I felt.  Lost at sea, with no idea how to get back home.  While everyone else continued living as before, I was shipwrecked to a distant island.  Strangely, I never felt more alone than at the times I put my mask on, forced myself to be social, and visited the mainland.

It took a while before I realized that I wasn’t alone on my new shores.  There were other islanders, many of whom had been there for some time, and had developed survival skills.  There were even other islands, often with much more savage terrain than my own to deal with.  Most of all, there were people just like me.  It wasn’t so lonely any more, I had a new kindred.  In fact, it was impossible to be lonely, because more and more people are washed up on our shores every day, and they need us to show them they are not alone, will never be on their own.

Still, sometimes I get jealous of the mainlanders.  Sometimes I feel resentful that living on my island requires a lot of effort.  Sometimes I need to hear a, “me too” or a, “I know how you feel.”  The language of my people.

After some time on the island, I feel like a native.  Like I’ve always been here, like I belong here, amongst other kindred spirits.  My island has a rugged beauty that I love.  The citizens here holding each other so that were one of us to go adrift again, we could be pulled back home.

I found that once I accepted that I’m not a mainlander anymore, I could find a way to build bridges back there.  I can spend more time there now, as an expat, knowing that because I’ve changed so has the way I look at the place I once dwelled.  Many of my mainlander friends and family have found a way to reach out across the sea, or we meet on our bridge in the middle.  Though I’m foreign to them now, I’m still kin.  Some of them have told me about their own shipwrecks, different to mine, that left them floundering in their own abyss.  They let me know that I don’t need to wear that mask with them.  Most of the time I feel comfortable visiting the mainland,  but only because I know that when I don’t, I can come home to my kindred, and we can speak the language that unites us.

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

Pudding declares she is going to help Mummy to clean.

But cleaning isn't as much fun as she thought.

January began by receiving official notification of Spectrummy Daddy’s next assignment.  Spoiler alert- it was to Johannesburg.  I drank lots of cups of tea, and figured out the purpose of Time Out.  Over at Hopeful Parents I tackled the idea of Mother Wars…I’m definitely no Tiger Mother, apart from when I have to be.

In February there was even more tea, but this time it was going cold.  Pudding began playing Jedi mind tricks on us, and I mused about how it might be to see things through her eyes.  I got a little more political than I intended.  I learned from Pudding that I too needed a little perspective.

By March, Cubby was chatting up a storm, and we celebrate his birthday.  Pudding went swimming with Miss Arizona.  We had a Yes Day, which is the perfect relief from all those Paper Cuts.

April was all about Autism Awareness, of course.  We even went to ask The President to Light It Up Blue.  It was full of highs like Pudding beginning to write, and the lows of anxiety.  I had that revelation that my behaviour is communication.  Some of those days I’d be glad to forget.  I got the chance to tell Parents that the 1 child in 110 is mine, and I’m incredibly grateful for her.

In May I got to meet my friend Alysia from Try Defying Gravity in Boston.  I also met Varda from The Squashed Bologna, and that month on her blog I discussed how my two saplings are growing together.  Pudding racked up another three diagnoses.   Over at About.com I talked about being an Autism Mother.  I found that I was Somebody.

By June I was having Flashbacks, which means it must be getting close to moving time.  I said I’m sorry- I’m thinking of having this made into a form so I can quickly email it out in future.  I became a realist, and developed a whole new vocabulary at The SPD Blogger Network.  Most of all, I wondered why my family was so invisible.

In July, we found that concessions could be a piece of cake…but it will only lead to feeling guilty.  Pudding had her last day at preschool, and I learned that the grass is always greener.  In my spare time, I conducted physics experiments.

August, we…erm…moved.  Far.  You can read about the Journey here, and the destination here.  I found that our new community was something of a safe heaven for all of us.

September meant it was time for my Little Sheldon to become a preschooler, whether I was ready or not.   Meanwhile Pudding was planning ahead for Christmas.  I was running my own kind of marathon, contributing to a book, and I started an a-z series.  Phew!

In October we went to the goat’s cheese store.  Steve Jobs died, but left us an incredible legacy.  Just as we’re settling in to our new home, our marriage faces its toughest challenge yet.  I raised some awareness for SPD.

By November I ‘d done enough talking, and left it up to Pudding to take part in Autistics Speaking Day.  Pudding dealt with some pretty big emotions.  I got completely carried away with #youmightbeanautismparentif and said a prayer of thanks (apart from peanuts).

December can only mean one thing: Pudding’s birthday, and Christmas (yeah, I’m no good at counting).  Oh, and she ended the year by displaying her talents for hairdressing and telephone conversations.

You know, looking back on all that makes me realize exactly why I’m so exhausted- that was quite a year!  Thank you for spending it with us…I can’t wait to see what will happen next, and I hope you’ll join us too.

Harvest Time

Today, on the very last day of the year, my first tomato was ready to be plucked.

From her enigmatic smile, I'd say she likes it.

You may remember my plans to plant a sensory garden, with the hope that Pudding would become involved, and perhaps develop an interest in gardening herself.  Well, she wasn’t so interested, but I enjoyed my efforts anyway.  We’ve been eating the herbs I’ve grown over the last few months, and finally one of those tomatoes is ready.  I even got Pudding to try it, which is an achievement in itself.  I have a feeling that this coming year will be full of all kinds of growth.

I hope that 2012 is a year you get to enjoy the fruits of you labour- as messy and mushy as that may be at times.

This has been an incredible year, and I thank you for sharing it with us.

Happy New Year to you, with love from all our family.

She was downstairs for now, and I wasn’t quite sure what she was up to, but the lesser of two evils would be having one of them asleep so I could focus on the other one (and perhaps clean up any mess).

She came to the door, and I made the non-verbal sign for “shh” by placing my finger over my lips. Pudding knows what this means, and imitates the gesture. She doesn’t always comply, but on this occasion she did, walking a few steps away before making noise.

She then decides to go back downstairs, and Cubby’s eyes close as he continues to stroke his hair. He is close to sleep now.

The phone rings, and his eyes flicker open. Damn. I stay where I am, choosing to ignore him. He is so close to sleep. It stops ringing. Then starts again. I hear Pudding come up the stairs, and I know she has answered it, though I can’t hear the conversation.

Remarkably, there is a conversation.

A few moments later she goes back downstairs and I steal out of the room as soon as I think Cubby has fallen asleep. I find a missed call from Spectrummy Daddy and he tells me he was calling to let me know he was on his way back from a meeting in Soweto. Then he details the conversation.

Pudding (picking up the phone): Hello?

Daddy: Hello Pudding!

Pudding: I’m talking to Daddy!

Daddy: Yes…where is Mummy?

Pudding: She’s putting Cubby to sleep.

Daddy: Oh, okay.

Pudding: Cubby went on the potty for a skittle.*

Daddy: Good for him! Now, Pudding, hang up the phone…bye bye.

Pudding: Bye-bye Daddy (hangs up the phone).

*This part didn’t happen exactly as she tells it.

We are working on a system where Cubby gets a reward (skittle) for using the potty, but he is only interested intermittently. When he feels like a skittle, he uses the potty, but let’s just say he isn’t exactly responding as well as his sister did to this method, where “potty for skittle” was the bargaining tool she used whenever she wanted to go to the bathroom.

Eventually we faded out the treats as she became fully potty-trained. But Pudding does not appreciate her brother being rewarded for something that she isn’t (and vice versa, I might add). So now when she goes to the bathroom, we’re back to the demands for treats, and no amount of explaining convinces her that she doesn’t need one.

Now what did happen….

Pudding was downstairs and went to the bathroom. I wasn’t around, so she went upstairs to request her skittle. As mentioned, I motioned for her to be quiet, and she returned downstairs, to go to the kitchen, move a chair to get into the treat cupboard, help herself to (one? several?) the skittles, and was probably disturbed by the phone ringing before she ate the entire packet. Telling Daddy that was only going to get her into trouble, and she knew it.

But, hey, check out my girl’s telephone manner!

Smart kid that one: conversation is an essential skill, but not incriminating oneself is even more useful.

What’s more, the author knows how difficult it can be to teach proficiency in these areas.  We don’t remember learning these skills ourselves, and our efforts soon end in disaster when we get overwhelmed with emotion.  This book gives us everything we need to overcome these hurdles, and provides a systematic approach to developing the tools our children need for self-reliance.

Patricia Romanowski Bashe is the coauthor of The Oasis Guide to Asperger Syndrome, one of the first books I devoured following Pudding’s diagnosis two years ago.  When her publishers contacted me to see if I’d review a copy of her new book, I jumped at the chance, even though I felt like Pudding’s self-help skills were pretty okay.  I thought this book would be a great one to have on my shelf as Pudding gets older and we have to start working on ways she can be more independent.

I couldn’t have been more wrong- this is not a book that stayed on my shelf!  I was implementing changes before I’d even finished reading.  As a parent of a child on the spectrum, the author knows how much easier it is to just do things ourselves.  When you’re in a hurry (and when aren’t we in a hurry?) you don’t have time to teach these skills.  As a behavior analyst, she knows the implications of not allowing our kids to develop their independence.

Now, as I mentioned, I didn’t particularly feel that Pudding is a particularly dependent child; but by helping her in the wrong way, I’d been unintentionally encouraging her to be more dependent on me.  I often talk Pudding through a series of actions, like getting dressed, or cleaning her room.  It gets the job done, but it doesn’t teach Pudding to do it herself.  If I (or somebody else) were not there to keep giving the directions, she would not be able to complete the activity.  And the worst thing about my talking her through it?  It makes it even more difficult for her to concentrate on what she needs to do:

“Remember that kids with AS are attracted to language; when words start flowing in, their attention to most other stimuli goes out the window.” p.148

The more I read, the sooner I wanted to alter my techniques.  Like many parents, I have some reservations about the use of an ABA approach.  While I think it is an excellent tool for teaching skills, and perhaps “real-life” skills most of all, I’ve always been put off by the idea of collecting and monitoring data.  Every single objection I had is addressed in the book, and explained in a way that makes sense to me- we are evaluating the usefulness of the teaching method, rather than the performance of the child.

I was ready to jump in.

The book comes complete with all you need to get started, including a chart showing at which age most children have acquired certain skills.  Pudding has just turned 5, so I looked for a task we’d never tried before to get started: making her own bed (not perfectly).  This was a good place to start.  It is easy for me to remain calm and objective (and not interfere) while observing Pudding making a bed.  There was no safety issue at stake, and as we are on Christmas break, no real hurry or time pressure.  The conditions were perfect.  I found a suitable reinforcer, and using the techniques detailed in the book, Pudding is now independently making her own bed in the mornings.  No nagging, no prompting, just another skill that she will use throughout her life.

There are plenty more to get working on.  Learning and developing the skills our kids need to live independently is going to take time and effort, it is never too early to start.  As Bashe writes:

“Ultimately, it’s all about choice.  And when we limit the skills needed to exercise choices, we limit choice.”

I couldn’t recommend this book enough.  It has everything you need to begin teaching or shaping the skills our kids need for when we’re not around.  It might be the best gift we ever give our children.

The Parents’ Guide to Teaching Kids with Asperger Syndrome and Similar ASDs Real-Life Skills for Independence is available now.  You can find more information about Patty Bashe at her web site >here< and purchase the book from Amazon >here<.

They share a mutual love of fountains.

Happy Wordless Wednesday everyone!