Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘illness

Better

with 3 comments

Cubby got sick yesterday.  He started with diarrhea, went to lost appetite, and finished up at fever.  We had a stay-at-home day making the most of our new GIANT beanbag (only it isn’t beans and the kids adore the sensory experience) thing.  So there was too much TV and movies, with a little bit of drawing and writing practice, but mostly a comfortable day at home.

Then comes nightfall, and the illness kicked up a notch, as they are wont to do.  He was sick all over our bed, and the diarrhea became worse.  The fever got higher today.  It would abate when we gave him medicine, but then pick up again as it wore off.  The highest it got was 102.7.  In the week, we’d have been straight to the clinic, but at the weekend it gets trickier.  He didn’t appear dehydrated, but the diarrhea was more frequent, and he was definitely more miserable.

In the late afternoon, I changed his diaper and found blood and mucous.  Oops, should have done a warning earlier in this post, shouldn’t I?  I really hope you’re not reading this over breakfast.  Sorry.  Anyway, with that, the four of us were winging it to the ER/Casualty whatever you want to call it.  Last time I went there was with Pudding, and it had been a pretty bad experience.  Spectrummy Daddy pointed out the peanuts(!) scattered on the floor, and I wasn’t hoping for much better on this occasion.

But this time it was better.  They did chide me for only having a GP and not a pediatrician.  But I just took it, without pointing out that our GP knows more about allergies and anaphylaxis than anyone in that nut-infested clinic, and that we did have a pediatrician based in this very hospital, but he died and you didn’t tell us and when we called for an appointment the replacement had too many patients so we had to go elsewhere.  To the GP.

I also didn’t, having learned my lesson the last time, try to tell them about Cubby’s sensory issues, or his hyperactivity, how he could have ADHD, or he might have a dash of Asperger’s.  I kept mum, if you will.  This was much better.  He was just a three year-old having a very bad weekend, and we were just his average family looking for some help.  They found us a room quickly, and the doctor came not much longer after that.

The doctor examined Cubby, who only resisted slightly (progress!).  He decided Cubby was not dehydrated, and the bloody stools were a result of too much diarrhea, probably caused by an infection.  He wrote a prescription, and we were free to go.

Not much of a story, eh?  Well, for me the big story here is what I’m not mentioning.  Have you noticed I haven’t spoken of Pudding?  Pudding, who can’t stand to be cooped up in the house for two days, coped.  And Pudding, who hates the hospital, came along without a peep.  And Pudding, who used to crawl all over the floor and put everything she found in her mouth, sat in her chair and didn’t even notice the peanuts on the floor.  Pudding, who finds waiting rooms too much, waited.  Pudding, who finds the examination room a sensory nightmare, sat in her chair and drew Hello Kitty.

So, while it wasn’t the best weekend, it shows the leaps and bounds our girl has been making lately.  Not just in things she can can now do, but also in the things she no longer does.  Today could have been a hundred times worse.  Today I saw how things are getting better.  Now we only need to hope the same for poor Cubby.

 

Written by Spectrummy Mummy

October 14, 2012 at 9:11 pm

Fan

with 4 comments

 

Back when we first started planning our trip to England, I wasn’t working.  By the time the trip came around, I was employed, and things were busy.  Not only was I new to the job, but the last couple of months are the busiest time of year, and then because of certain organizational changes, and certain people visiting, things were even busier.  There wasn’t time to think in those last few days, let alone pack, prepare the kids, and prepare the office.  Which means it was perfect timing for things to go horribly wrong.

In the week leading up to our departure, Cubby was ill, followed by myself and Spectrummy Daddy in quick succession.  We all recovered, and were feeling well by Friday, the day of departure.  I hadn’t been in the office for long when the call came from Pudding’s school that she was ill.  I raced out to get her, and out to the doctor.  She was feverish, and looked miserable, which was just how I felt.

Pudding was much more defensive than she usually is with the GP- a sure sign that she was ill.  With much patience and coaxing, the doctor managed to assess her, and promptly diagnosed Tonsilitis and a chest infection.  I must have looked how I felt, because the doctor told me she’d give Pudding some medicine, and she’d be fine to travel.  Really?  Yes, because I was her patient too, and she knows how much I needed to get away.  Pudding could be treated, and would soon be back to full health.

I asked our Regional Medical Officer for a second opinion, and he concurred.  The trip was still on, we just had to get the medication inside her.

That was easier written than done.

Pudding refused all medications, both tablet and syrup forms.  We tried mixing it into drinks, we tried bribing her, she refused.  She was not going to take that medicine!  And I wasn’t, I mean I just wasn’t going to put her through that flight without medication.  I couldn’t.  I didn’t voice it out loud, but I mentally prepared myself for not boarding.  Time ticked on, and we were sent to the gate, still without Pudding taking her medicine.

And then I saw it….a Hello Kitty fan!

Now, Hello Kitty is the tops for Pudding in terms of special interests.  But fans are the most stimtastic things for Pudding.  She learned at just a few weeks old that if she screamed if the fan was turned off, we’d turn it back on for her.  I remember Pudding not engaging in most of the assessments during her evaluation because there was a fan in the room, and she just had to keep telling us about it, and staring at it, and spinning like it.  Fans?  Fans are big.  Hello Kitty fans?  Colossal.  I instructed Spectrummy Daddy to furtively buy one.

And moments before boarding, I showed it to her.  She could have it, but she had to take the medicine.  And this time, no fuss, no fight.  She took it all.  Her temperature started to drop immediately.  And for the first time that long day, she was all smiles.

As we passed through the entrance to board the plane, one of the ground staff asked Pudding if it was her magic wand.  And of course, Pudding corrected her that it was a Hello Kitty fan.  She was right, but it was my magic wand.  And to England we did go by the grace of that Hello Kitty fan.  We ended up losing it a week or so later in some motorway services in the north of England with some other Kitty paraphernalia.

I like to think that some magic rubbed off to whoever was lucky enough to hold it next.  Because in spite of that truly turbulent start, the rest of the flight was smooth…and Pudding recovered quickly, and well, I’ll tell you some of the rest of our magical adventures another time.

 

Written by Spectrummy Mummy

September 26, 2012 at 5:19 pm

The Whole Story

with 30 comments

I haven’t written about what has been going on, but I’ve decided that all parts of the story need to be told.  This month has been hard.  I need to let my friends who call me a super-mum know that I’m really not feeling super.  I need to explain that although we love living here, it comes at a price.  But most of all, I just need to tell the truth about hard times, because I know many people are going through even longer, tougher, more challenging times.  It isn’t fair to them, or myself to pretend everything is fine.

So, this month has been hard.  Mostly it has been difficult because I’ve been unwell.  So as not to scare away my (three) male readers, I’ll refer to my health issues as some ongoing lady problems that have been getting progressively worse.  Ultimately, I’m now very anaemic, which is good in that it is treatable, but bad in that it makes me feel lousy.  I’m weak and tired.  My brain feels like mush, and can’t seem to retain any information, I’m forgetting appointments.  I have heart palpitations, and wake up with numb hands, arms and feet.  My immune system is struggling, so I’m catching every germ I come across, and each one is hitting me hard.

Some of my medications have nasty side-effects too, and one weekend my fingers swelled up and I had to have my wedding and engagement rings cut off.  But I am receiving treatments, including iron injections every two weeks so that I’ll be back to speed in weeks rather than months.  Though I can’t exercise at the moment, I’m doing my best to rest, eat an iron-rich diet, and take all the supplements to support the healing process.  It just takes time.

I’m spending much more time indoors than I have previously while living in South Africa.  Unfortunately, living in a house with bars on the windows inevitably feels a lot like living in a prison, this is made all the worse by the fact that recent events mean I don’t feel as safe in my home as I used to.  Earlier this month, there was an armed robbery on our compound.  By a huge stroke of luck, all the families who live here were out at the time.  Generally on a Saturday afternoon, either our children or our neighbours are playing where the incident happened.  Anyone who has a young child on the spectrum knows that in the face of danger, they are likely to behave unpredictably.  I’ve lost many hours of sleep thinking about what might have happened if we hadn’t gone out that day.  The security officers here are great, and have already made some changes to minimize the risk of this happening again, but I’m shaken that an electric fence, gate, and security guard were ultimately so easy to overcome.

It has been hard because I’m always far more homesick after my parents visit than I am before.  Homesickness and culture shock are wrapped tightly together.  The more you miss home, the more alien a place can seem.  I’m struggling to remind myself to enjoy all the wonderful people and places here, rather than wishing for September to get here for an R & R trip back to England.

Last week brought things to a head.  I forgot to take Pudding swimming one day, then Cubby to OT another.  Then Cubby was ill, followed by Pudding too.  Instead of wanting to rest in bed, my kids become more hyperactive when they’re sick.  Not only was I struggling to keep up with them, but I’d missed the very things that help them to regulate.  By Friday, I was just exhausted.  Not only was I feeling too weary to face the effort of getting Pudding into school, or schedule an appointment for a 24-hour EEG for a child who couldn’t handle a 30 minute one; but I was too drained to get through another ordinary day.

Far from the “super-mum” a friend called me in an email, I was feeling physically and emotionally at rock bottom, and taking my frustrations out on the very people who most need my love and support.  When Spectrummy Daddy got home from work, I took a bath, and let my tears fall into the water, until most of the tension left me.  After we’d got the kids to sleep, we talked about what measures we could take to make things easier.  But, once I’d finally let go of trying to keep everything together, I no longer felt like I was coming apart.

It isn’t the end of this hard month yet, but I’m starting to feel stronger.  Yesterday when the car broke down, I didn’t join it.  I was just grateful it happened with Spectrummy Daddy there, and in a safe place.  I’m using visual strategies to keep me on track of the things I need to do this week, and hopefully that will keep me from getting too overwhelmed.  After all, if it is good enough for Pudding, it is good enough for me too.

So now I’ve honoured the truth.  I’m not a super-mum.  Though I love living here, it does come at a cost.  I can go through hard times, and while they have absolutely nothing to do with autism, they can challenge my ability to parent.  I’m going to keep telling the whole story, even if I’m hoping that this particular chapter will come to an end soon.

Written by Spectrummy Mummy

March 26, 2012 at 11:50 am

Negotiation

with 11 comments

Pudding has always had quite excellent negotiation skills. She pretty much potty-trained herself by demanding a treat every time. Later came the reward chart, and as soon as we started talking about a long-haul flight, she mentioned that she needed a Kelly doll. Okay, perhaps I mean extortion, rather than negotiation. Either way, the girl has talent.

We’re lucky in that we can use this facet of her personality to encourage more flexible behaviour. There are times, however, that she clams up, refuses to cooperate, and her behaviour spirals out of control. I hope, as you’re reading this, you remember that I wrote a post called “Behaviour is Communication“. Such a simple concept, you’d think I’d remember it, wouldn’t you? You’d think.

My excuse this time was that I was thrown by an added factor- a new medication trial for her ADHD. This is our third medication trial, and each time I’m hopeful that we’ll have success. This new medication promises excellent results in terms of attention, at the right dosage, with very few side effects. I paid close attention to her response, and saw no difference in her attention skills, a sharp increase in her irritability and hyperactivity. Somehow, going to the grocery store was even more difficult than usual. When four hours were up, and the medication no longer in her system, I expected a return to (our version of) normal, but she remained very emotional and inflexible.

On Sunday, we decided to go to the African Craft Market. Pudding, a sensory seeker, generally loves all the sights, sounds, and smells of this place, but because it can get crowded, we always have to be prepared for sensory overload.

We brought along some fidgets, snacks, and her weighted vest, but by far our greatest defense from feeling overwhelmed is our double stroller (pushchair). We attract some looks with this thing. Though it is easy to manouvre, it is big. And Pudding: she is big too. We might attract attention having an (almost) five year-old in a stroller, one who looks at least two years older than that, even more so. Still, Pudding is happy there, and can pull down the hood when it all gets too much.

Before we entered the market, we stopped for a coffee, and the kids got out of the stroller to sit at the table. Cubby took the first chair, and Pudding had a meltdown. This behaviour is so uncharacteristic of her, that I couldn’t figure out the source of the problem. She was incoherent with rage, and my efforts at calming her were in vain. Spectrummy Daddy deduced that Cubby was in the wrong chair, and successfully persuaded Cubby to swap with his sister. Daddy gave her one of his big squeezes, and all was right again. With this problem solved, a sensible woman might have decided to quit right there, but I didn’t get where I am by being sensible. To the market we went!

Cubby, struggling to assert his independence, decided to walk while his big sister rode along. We found a gift for our friends’ new baby, and we needed to wait while we had it personalized. We wandered around the rest of the stalls, and Cubby began to tire. And by tire, I mean running in all directions and touching everything within reach in a manner eerily reminiscent of his big sister at that age.

I’d spotted a tablecloth I liked, and the trader began her negotiations. I figured it would be easier if I transferred Cubby to the stroller. You’d think by now I’d no longer be following my instincts, they hadn’t proven so useful that morning.

I persuaded him to ride in the stroller with the offer of a snack and a drink. A fine idea in theory, but somehow the cup tipped up, and the drink spilled out into Pudding’s seat. As the trader continued her hard sell, I was trying to dry the water from her seat, as Pudding’s father tried to prevent her from assaulting her sibling, who was now quite content in his side of the stroller, munching on a cracker.

Pudding screamed that her brother had to get out of the stroller, and we attracted more attention than any of the curios on display. I told the trader that we had to go right now, and would return another week for the tablecloth. But market people know that those who promise to return never do, and she wasn’t going to let a sale slip out of her hands. She lowered her price, Pudding continued to scream, I told her we had to go.

Finally she asked what I would pay, and I countered with a price over a 100 rands lower than her best offer. Pudding quieted. The lady agreed the sale. We quickly handed over the money, ready to leave.

Pudding remained calm. She got back in the stroller beside her brother, and we didn’t hear another sound from them until it was time to go. Naturally, they didn’t want to go home.

At bedtime, Pudding became sick, and after a very disturbed night, all four of us woke up with a cold. Just like the time before, my girl who is unable to use words to let us know when she feels ill had let her behaviour do the talking. It is so obvious in hindsight.

Though of course, there is the other possibility that our master negotiator was dismayed at how I was handling the transaction, and did her bit to help. When it comes to that kid, I’d say anything is possible!

Written by Spectrummy Mummy

November 7, 2011 at 4:16 pm

Waiting

with 10 comments

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

Behaviour Is Communication

with 22 comments

I didn’t come up with this idea.  It was….ooh, can’t find it.  Probably Skinner though, sounds like one of his.  Feel free to let me know in the comments, I don’t have time to find out this week.  Anyway, behaviour is communication.  I know that.  I’m a Spectrummy Mummy.  I know these things because we get a nice little manual explaining everything with the diagnosis.  No, I’m just messing with you.  I know this through learning the hard way.  There never is an easy way, now is there?

So just to be clear, I know that behavior is communication.  Right?

I also know that my girl has a pragmatic language delay, and that her senses create a bunch of mixed signals, which cause her to be disconnected from her body.  Yep, I know that.  I know things, see.

On top of this, I know my girl.  I know my girl.  I don’t claim to always understand her, but I do know her.

Still, on Monday, all I saw was a terrible day.  I knew her sensory issues were driving her behavior, but that seemed to be all I could see.  She was more impulsive, compulsive, destructive than I’d seen her in a very long time.  I asked myself why, but I guess the part of my brain that figure out these things was too busy trying to deal with the chaos.  Because unregulated Pudding is chaos.  Impulsive, compulsive, destructive chaos.

She was ill.  She felt wrong, and was compelled to make herself feel right, with her sensory-seeking ways.  When they didn’t work, she didn’t stop, she just kept going.  Desperately trying to make it better, angry with me and herself for not being able to fix the problem.  She can’t tell me she is ill, in fact, she says the reverse when I ask her.  Experience has given us clues.  If she talks about wanting to clean her mouth- get a bucket, she is less than 10 seconds away from vomiting.  If she wants to lie down, or needs a blanket, or tells you to clean it up, she is ill.  She’ll tell you she is not sick if you ask her, but she is.  You just have to read her behaviour.

So I can’t tell you why I didn’t think she was ill on Monday.  That I didn’t interpret all that behavior as communicating that basic fact.  If I’d known, we’d definitely have skipped speech therapy.  Who needs that when they are ill?

Yet, aside from that, I wouldn’t have done anything different.  When she got into the fridge and began smearing food everywhere, I found some tactile activities for her.  When she jumped on the sofa and the bed,  I directed her to the trampoline.  When she asked for hugs, I gave them.  When she pushed me away angrily, I let her.  When she screamed, I was calm.  Not a natural calm, but a learned, forced, necessary calm.  A calm almost two years in the making.

I’m not a saint, I was ready for a drink when Daddy walked through the door, I whined to him about all the gory details of the day.  But I’m also a little wiser than I used to be.  I know that behaviour is communication.  And even when, especially when, I can’t understand hers, I need to make sure I’m communicating the right thing.  That I’m here, even when she pushes me away.  That I can’t always make it better, but I will always try.  That when her world feels terrible and different, I will be constant.

You know though, if I could go back two years ago to that Mummy who didn’t know, I’d whisper in her ear what I know now.  Behaviour is communication.  Somebody (damn it, who?) very important came up with that, but before you even try to understand Pudding, you’d better look at your behaviour first.  You can read all about it in this manual.  Nope, just kidding!  Still no manual, sorry.  I keep finding there is still so much I just don’t know, even when I know it.

_______

Today you’ll also find me at The SPD Blogger Network.  Come over and read and share.

Written by Spectrummy Mummy

April 7, 2011 at 6:43 am

Sick to Death

with 33 comments

I’d been looking to going out for my husband’s birthday for…..well, since whenever the last time was I got out of the house without the kids.  The fact that I can’t remember when that was speaks volumes.  This has just been a rough winter for our family.  So on Friday when Cubby seemed even clingier than usual, I hoped for the best.  I took his temperature and it read 103F.  Of course.

I stayed home.  Again.  There are now calls for my husband to take a photo of me with today’s newspaper to prove I’m still alive.  After all, anyone could update a Facebook or Twitter status, or write a blog post with the words “centre” and “colour” deliberately misspelled to look authentically British.  I mean, when was the last time you spoke to me?!  Of course, things aren’t that bad, but I do kind of miss the outside.

Apart from waking up a little extra in the night, he wasn’t so bad.  And on Saturday and Sunday he was just fine.  Perhaps a little off his food, perhaps a little cranky, but that is hard to detect in a toddler who delights in being both picky and cranky.  We stuck close to home just in case, and I got some spring cleaning done, like cleaning our very sticky dining room carpet.

On Monday I was getting Pudding ready for school, when he was suddenly violently sick.  Of course, on the dining room carpet.  It just looked too fresh and clean to belong in our house, I suppose.  I took him upstairs, and he was sick all over our bed.  I asked him if he was sick, but he replied that no, he was sad.  Poor boy.  I cleaned him up, sent Pudding off to school.  He took a nap, and woke up in time for a quick snack before we left to collect Pudding to take her for her speech therapy session.  I debated canceling, but we’d missed the previous two sessions.  Besides, he seemed fine after the nap.

He wasn’t.  He was sick in spectacular fashion on the way there, to Pudding’s fascinated horror, and then again on the way home.  I removed his clothes in the kitchen, and as I went to get a cloth to clean him up, he vomited again.  And then slipped in it and banged his head in it.  Sigh.  I gathered him up, and he transferred the whole mess to me and my hair.

He was the kind of clingy that meant even the briefest of showers had a background of screaming.  Only after I got out did I realize I hadn’t washed my hair.  Sigh.  In all this time, Pudding had precisely none of my attention, a circumstance that she was determined to rectify.  I poured a bath for Cubby, and she immediately stripped all her clothes off to join him.  I told her that there would be no bath for her.  Cubby was sick, and needed to get clean.

Pudding– PUDDING’S SICK!!!

Me– Oh really, Pudding?  You’re sick too?

Pudding– Yes, I’m sick.  I need some medicine.  You take medicine when you’re sick.

Well, she got me on that one, but I still denied the bath.

***

The next day I was still dealing with a sickly boy, when I got the call from the school to collect Pudding.  She was listless and asking to lie down.  I got her into the car, and asked if she was sick.  And this time, this time she replies:

-No, I’m NOT sick!!!  Cubby’s sick.  Cubby’s wearing pyjamas.  I don’t want to wear pyjamas, I want to wear a dress.  I don’t want to go to bed.  I’m NOT sick.

And then the rest of the day did a very good demonstration of how she was not sick, but extremely out of sync.  Eventually she developed a fever, so she is still home.  She is off her food too, which is most un-Puddinglike.  Perhaps this is the incubation period before things get messy.

***

Having observed my kids this winter, I think illness magnifies their sensory tendencies.  Cubby, my sensitive avoider, wants everything to be calm and quiet.  He is content to lie down (as long as I’m there with him) and read books.  He loses his ability to tolerate his sister’s closeness and noise-making.  Pudding, my underresponsive seeker, seems to be looking for yet more input to regulate herself.  As much of a struggle as it can be for them to be together when they’re well, it is so much worse when they are ill.  I’m right in the middle, trying to keep both of them happy, and not doing such a stellar job of it.  I just need to avoid catching it myself.

So that is where we are this week.  If I go quiet on the social media, you’ll know why.  But if a short post about colour centres hits your inbox, ask my husband about that picture with today’s newspaper, would you?

Written by Spectrummy Mummy

March 17, 2011 at 6:54 am