Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for September 2011

Ready or Not (at Hopeful Parents)

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Hopeful Parents

This was originally published at Hopeful Parents.  You can read the post here.

I was out of sight during a game of hide-and-seek, and Cubby couldn’t find me.  Just a few months ago, this entire scenario would have been impossible.  Before we started Early Intervention, I couldn’t leave Cubby.  Ever.  I couldn’t go into another room.  He could only sleep next to me.  I couldn’t use the bathroom alone or take a shower.  His occupational therapist began introducing games of hide-and-seek for the three of us at the local playground, and slowly, slowly, he got better.  He learned to trust her, and eventually learned to trust that I would come back.

Mummy, where are you?  I miss you!

There isn’t a day that goes by when I don’t marvel at this boy’s language skills.  His ease at expressing himself and his emotions, so strikingly different from his older sister.  I let myself exhale a little.  It won’t be so hard for this one.  He can communicate, he can tell someone else what is wrong.  He doesn’t rely on me to decode every situation, every adverse sensory reaction.

He made other kids of progress too under Early Intervention.  He strengthened his muscles, both fine and gross.  He can hold a crayon correctly, he can jump from one place to another.  He learned to tolerate being touched, and ask what was making the noise.

But there were some goals we didn’t achieve before we moved.  He still struggles with waiting and turn-taking.  He is still an anxious little boy whose attention span is very short.  Most of all, though, he is still a child that can’t always play well with others.  He gets too overwhelmed.  He prefers to sit on the sidelines, observing.  For all the great strides he has made, I still worry.  Of course I worry- I’m his mother, and he will always be my baby.

As his mother I can do so much for him.  I can give him a sensory diet, to lessen his need to spin himself in circles.  I can distract him when he repeats things over and over- echoing his sister’s echolalia.  I can explain things, prepare him, help him understand this at times confusing world.  But I can only do so much.  What I can’t do is be a typically developing peer and playmate.

So today he starts preschool.  He is excited.  He is ready, but I’m not.  I’m afraid that this sensitive little soul will become overwhelmed and will withdraw just as Pudding did when she started school.  Recently we’ve spent a lot of time together, just the two of us.  Over a cup or two of rooibos tea, we’ve talked about school, and how Mummy can’t stay, and the teacher and new friends will be there to play, until I collect him before lunch.  Every day he asks to go to school.  He is ready.  I can’t hide from it, not when he is seeking something more.

So I stepped out of my hiding place.

I miss you too!

I gave him a hug, and he giggled.  Ready or not, here we come.

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Written by Spectrummy Mummy

September 19, 2011 at 10:52 am

Waiting

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Cubby’s school required a physical before admission, so I found a pediatrician and made an appointment for both kids.  Pudding has always been my robust, healthy child, so I wasn’t too concerned about her.  As the days got closer to the appointment, though, her allergies seemed suddenly worse, and she developed diarrhea.  When we finally met with the doctor, she looked pasty and had dark circles under her eyes.

The doctor asked if iron deficiency might be a problem.  Honestly, Pudding has a better diet than most preschoolers, and is in no way as picky as her brother when it comes to food.  I asked him what the symptoms were: headaches (she wouldn’t be able to tell me), weakness (erm..), irritability (well…), attention problems (sure…), and pica (yes).  We’d have to do a blood test, and lucky for us, there was a laboratory right there in the hospital.

Unlucky for us, I was by myself with both kids, no social story preparation for Pudding, and yet more paperwork to complete while we waited.  Somehow we got through it,and waited a few days for the results.  When I got the phone call from the doctor, he told me had more questions than answers, and I’d need to come back in urgently for more blood samples.  I heard “anemia”, “abnormal results” and “white blood cells” before I started to panic.

We returned for another blood draw, but then the laboratory botched the results, so we are waiting again.  The doctor has assured us that it probably isn’t anything too serious, and we are treating her anemia while we try and find out more.  There are many things it could be, so we just have to wait and see what happens.

As I’m sure you all know by now, patience isn’t my virtue, which is why I’m convinced I’m constantly sent trials like these.  I’m sure whoever is in charge of the Ever-After keeps looking up my chart and deciding I’m still not worthy- retest.

So here we are, with more questions than answers.  More worries than peace of mind.  Treating symptoms when we don’t know the cause.  As always, the unknown being a scary place for a parent.  I’m hoping Pudding makes a rapid recovery from this mystery illness.  I’m just glad the doctor picked up on this before it became more serious.  The symptoms had completely eluded me.  I just wish we knew what was causing these problems, and I wish I knew for sure she wasn’t in pain.  The longer we wait, the more uncomfortable I become.

One thing I am comfortable about, is that this particular doctor will find out what is making Pudding ill.  It turns out he diagnosed the first ever case of Asperger’s Syndrome in this country.  The young man was 14, and had been shunted from one doctor to another all his life, until our doctor finally saw what everybody else was missing.  I’m just hoping he can find the missing piece of the puzzle for our girl.

Written by Spectrummy Mummy

September 16, 2011 at 6:19 am

Wordless Wednesday 14 Sep 11

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She doesn't get this from me

When I was Pudding’s age, I had a pretend iron and ironing board, and would blissfully play for hours on end.  The domestic conditioning didn’t stick though.  I never iron, nor would I ever buy Pudding such toys, but it seems girls will be girls no matter what.  Don’t worry- the iron wasn’t plugged in.  My feminist side isn’t happy, but yay for more pretend play!

Written by Spectrummy Mummy

September 14, 2011 at 3:19 am

In The Quiet (by Spectrummy Daddy)

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Spectrummy Daddy wrote this post for his personal blog, and I thought it belonged over here too…

 

Since the people reading this are probably friends of mine, I don’t have to tell you the my lovely daughter has Autism.  We’ve been very open about it, and luckily for us she is high functioning.  However, my daughter also has issues when it comes to loud noises.  On Saturday at a birthday party the magician popped balloons and she freaked out.  If there is a huge commotion she will become paralyzed with fear.  It’s one of the most heart-breaking things you’ll ever see.  This very tall 4 year old just crumbles into a pile and screams.  Because she also has Sensory Processing issues, she covers her eyes as well to try and make the noise stop.  It’s almost like she’s seeing sounds.

On a similar note, as most of you know, I listen to a lot of music.  Usually it’s pumping pretty loudly and it switches my brain off which allows me to stay calm as I suffer ocassionally from anxiety.  Different reactions to the same loud noise.  My lovely daughter does love music too, but usually when it’s not too loud and when she can sing very loudly, if not always on key.

The reason I’ve told you all this is because I’ve noticed something that maybe my daughter has correct.  Last night when I was sitting in my children’s room waiting for them to go to sleep, I had my music on.  It was tuned low so it wouldn’t disturb them, and I started to notice something.  Songs I had heard numerous times before sounded different.  There were added parts that made the sound richer and more full.  “Take Five” by Dave Brubek, only one of the greatest jazz songs ever recorded, sounded even better than usual as I could hear all the parts clearly and see how they all fit together.  “Panic Switch” by Silversun Pickups has a stick part from the drummer in the break I had never really heard fully before.  It’s pretty intricate.

It was amazing, and it made me think that maybe too loud is an issue for me too.  Maybe it’s an issue with everyone.  Maybe we have everything so loud we can’t listen to nuance.  Perhaps the problem with society is that we all have sensory issues, but we can chose to ignore them and we do.  Sadly my daughter can’t, so we’ll have to figure out how to turn the sound down on the world for her.  Maybe we all can do that, and listen to the intricate parts of life, and see how we all fit together.

Written by Spectrummy Mummy

September 12, 2011 at 12:31 pm

Growing Calm

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Pudding was on the verge of a meltdown.  I seized the opportunity to guide her through a breathing technique for relaxation.

Come on, let’s blow out the candles!”

With exaggerated puffs of air, I demonstrate.  She giggles.

I try again.  And again.  Eventually she joins in with me.  We are exhaling together…this is actually working!  Then she stops.

Mummy…where is the cake?  I want cake.”

Cake, what cake?  Oh, of course.  Candles means birthday cake.  We have a short exchange about the fact that it isn’t her birthday, or my birthday, or anybody’s birthday that we know, for that matter.  And- even worse- there isn’t any cake.

So, inevitably, the meltdown comes anyway, and yet another relaxation technique has left us both more worked up than before.

Now, I know what you’re thinking- keep trying, right?  Calm wasn’t built in a day.  You’re right of course, wise reader.  But the difficulty I have with self-calming, is that the self part has to be involved.  I know exactly what works for me: a cup of tea here, a bar of chocolate there.  Perhaps a shower, or a glass of wine, or even (unlikely as it seems to me) some exercise.  I’m good.

But the thing about Pudding, in all her glory, is that she is fundamentally very different to me.  What is calming for the goose just ruffles the feathers of the gander, or the gosling, in this case.  I’m better than I used to be, but I still have a lot to figure out about my little hatchling.  We know that preparing her with picture social stories works well.  I could make a visual about breathing techniques, and that might work.  Or then again, I could just make a social story about whatever upset her in the first place.

As always when I find myself up against the mighty force of Pudding’s brain, instead of looking at ways to change her, I try to change the environment around her.  I aim to create a little corner of the world where Pudding can retreat and relax.  In our new home, we’re very fortunate to have a wonderful garden.  I’m looking at ways to turn it into a sensory garden, to stimulate and nurture her erratic senses.  She has always liked the outdoors, and my tactile-seeking girl loves anything hands-on, so gardening might just be perfect for her.

It occurred to me as I was planting wonderfully fragrant herbs, feeling the silty texture of the soil, that plants present imagery that could be very useful as a relaxation guide.  As I introduce Pudding to roots and talk about how they dig deep into the soil, maybe one day I’ll be able to have her imagine being a tree with deep roots sinking down into the earth, and have her gently blow at the leaves on her tree.

Maybe.  One day.  That is the other thing about gardening- like it or not, nature forces us to be patient.  While we can cultivate and nurture, we can’t rush growth along.  With a little luck, and some glorious weather, patience might flourish for both of us.

It might just work.  And if not, at least we’ll get some tasty herbs and delicious tomatoes out of the deal- which is better than a load of hot air.  I’m growing calmer already.

This post was originally submitted for S.O.S Best of the Best, Edition 10: Calming Techniques for Stress and the Special Needs Child.

Wordless Wednesday 07 Sep 11

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I was showing Cubby the different flowers in the garden and telling him the real names.

Me: This one is called a lily.

Cubby: That’s not a lily, Mummy.  That’s called a privates!

Yeah, I can see his point too.

Happy Wordless Wednesday everyone!

Written by Spectrummy Mummy

September 7, 2011 at 12:50 am

Scent of a Pudding

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As far as we know, Pudding wasn’t able to smell things for a long time.  As with many of her senses, she was hypo-reactive to smell.  I didn’t know this for a long time, because how do you know if a small child can smell or not if they aren’t able to tell you?  Also, Pudding would frequently call things “stinky”, so I assumed, as I was wont to do back then, that there was no problem with her olfactory sense.

Mr. Hindsight (that smug old detective who goes around solving problems too late to be of use to anyone ) informed me that Pudding was using visual or auditory clues to identify when to use the term stinky, it had nothing to do with actually smelling anything bad.  For instance, a foul diaper (nappy) hidden away in a trash can would go unnoticed by Pudding, but if she saw her brother being changed, she would correctly identify it as a stinky one.

When a child is hyper or overreacts to smell, it is pretty obvious.  They’ll be disturbed by strong odours, and can even become physically sick when in the presence of an odour that is too strong.  When the child’s sensory perception presents like Pudding’s, it is harder to tell.  Kids who are unable to smell may lick or taste objects, but then they could be doing that for other reasons too.  Sometimes those who are under-responsive to smell go around sniffing objects and people.  That wasn’t our girl, so we figured we’d got away with one of her senses behaving reasonably normally.

I got some flowers for Mother’s Day, and Pudding asked to smell them.  She pressed her nose deep into the petals and inhaled for several seconds.  She was starting to smell.  Every time I cooked I’d offer her a sniff of a fruit or vegetable.  She likes to smell hot drinks, maybe because the steam adds an extra sensation for our girl.  She has slowly begun to identify scents without visual cues, like stating that a restaurant smells like pizza.  Now she gives her own descriptions, like a product smells “like babies.”

I can only imagine how those flowers in the garden must smell to her!

She still isn’t able to identify many precise smells, even strong ones like lemon, but she is getting there.  For me it is almost tangible proof that connections are being made in her brain.  To simplify things to a point that I can understand them, it feels like her sense of smell has been turned on, and is slowly working its way up to full power.  I’m curious as to what will happen next.  Will her sense of smell begin to function properly, or will we see more problems with modulation: sometimes seeking smells, sometimes being overwhelmed by them?

Right now, of all her senses, this is the least problematic.  She asks to smell food items, and if she likes it, she’ll have a taste.  So far, so typical.  She isn’t going around smelling people (yet) and is able to go to places with strong odours.  When I was pregnant with her, I went through the classic phase of overreacting to certain smells.  I couldn’t go down the coffee aisle in a supermarket, and I’d feel sick at the burger smell as I walked past fast food restaurants.  So far, we aren’t seeing anything like that in Pudding.

But I would still say there is something out of the ordinary about her sense of smell.  One morning last week I woke up to Pudding….how shall I put this?  Making her own fragrant sounds and smells.  I asked her if she wanted to go to the bathroom, but she declined with a giggle.  She continued with her funky music-making.

Me: Please go to the bathroom, it is stinky.

Pudding: No Mummy, it’s not stinky.  My trumps smell like flowers!

Sometimes I’m envious of her sensory dysfunction.  No matter how much I breathed in the odor, my nose never could detect those floral notes that are the signature scent of a Pudding!

Written by Spectrummy Mummy

September 6, 2011 at 3:16 am