Meltdowns, watch-whers and reasons to be cheerful

It's been a stormy week in this house, and everyone except Smiley was affected by the fallout from aspie boy's meltdowns: both parents, staff and pupils at his school, and his big sister too.   He cannot even tell me why, though I suspect his return to school after two weeks off due to sickness and a mid term break was probably the reason.

We have two types of meltdowns in this house now:

Emotional meltdowns - with lots of tears - are exhausting and upsetting for both of us, but they bring out my protective mothering instincts, and I cope with them reasonably well.  And afterwards we can hug and it's all okay again.

Angry meltdowns - a different matter.  They touch a nerve deep inside, my response to them is something primal: I want to stop the meltdown.  Or shout and scream, or run away.  None of which are recommended.

I remind myself of the watch-wher in my other favourite book, Dragonflight by Anne McCaffrey, as we both attempt to do the complete reverse of what comes naturally.  Because, as well as his Mum, I have to be his friend, the one person he can trust, the one who will never let him down.

Unlike the watch-wher the effort involved in trying to achieve does not kill me!  But at some point later, the tidal wave of feelings and emotions that are dammed up as I cope with the meltdown cannot be held back any longer and I go to pieces.... Anger scares me.  And my son tells me that he doesn't want to be angry either.  So why can't we prevent it?  Why does it keep happening?

But then this morning at 6, I pulled back the curtains to see a clear blue sky, and when my son got up at 8, it seemed that the storm was easing.  He left this morning clean, fed and on time, and had a good day in school.  I can't think of a better reason to be cheerful!

Dear Mr Brewer

Please take a close look at my daughter.  She's one of those disabled kids.  The kind you allegedly said should only be allowed to live after the cost has been evaluated.  She has cost A LOT since she was born.

(Dear reader, of you want to know the full horror of what he said, just google Collin Brewer Daily Mail)

But you only deal with cold hard economics, Mr Brewer?  Then let me tell you that my daughter keeps a whole army of people in employment:

Doctors, nurses, consultants, therapists.

Teachers, special needs assistants, social workers, care staff.

Whole companies that manufacture and service wheelchairs, hoists, therapeutic beds, walkers, special shoes, equipment and medication.

The cost of all this?

Massive.

But take another look at those pictures, Mr Brewer.  Look into those beautiful innocent eyes and tell me that your heart is not lifted.  You would be the first.

You see I look at it another way.

I look at the joy that she brings to everybody's lives.  And the value of that?

Priceless.

Sincerely yours,

Smiley's Mum

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I'm adding this post to a linky to protest about Collin Brewer's appalling views over at Downs Side Up, where Hayley blogs about her beautiful daughter Natty, a child model with Down's Syndrome.

The p*nis dress. The road trip. And the book.

I must be the only middle aged women who could buy a dress, wear it to an important function, and only realise afterwards that it has actual w*llies on it.  Seriously.  And I bought it in a proper grown up lady boutique.  I suppose I should have wondered why the sale price was so low...

(apologies for all the asterisks, I'm trying to fool the spammers)

I only discovered the w*llies when I got out the dress to wear on a rerun of a rather special women's night in.  But I wore it anyway, as I don't own any other posh frocks, and the other guests seemed to find it entertaining.  Phew!

The third outing for the p*nis dress was last night, at a very special book launch.

Special because the author is one of the friends I made some twenty years ago in Dublin when I began my journey as a Mum, and it's about therapeutic writing, so I'm interested to find out if that is similar to blogging.  Special because it was being launched on a Friday night in Galway and I would have to be back to put my son to bed and couldn't leave Dublin until I'd toileted my daughter.  And special because the other two mums in our group said they would come too.  So you know what that means?

A road trip.

Romantic notions swirled around my head of sunshine, and tousled hair, elbows out the windows and singing along to Sheryl Crow.  Or something.  Instead it was a very frazzled fifty-something Mum who collected her friends at 4pm on a Friday evening as the clouds started to pile up in the west, where we were headed.

But I needn't have felt anxious.  With friends you've known so long, that you don't see so often, the conversation just happens.  The music was switched off after the second song, and the five hours of driving just flew by.  Helped by lots of coffee and chocolate of course.

The book was launched with readings by some of the contributors, and we listened and watched as the sun went down over Lough Corrib, and felt so proud of our friend and so happy that we'd made it.  Then there were photos to be taken, and promises made to meet again soon, and suddenly it was a time for a farewell hug and back to the car for the long journey home.

I often have to say no, I shouldn't wear this, I can't do that, I can't go there.  So it was really life affirming to be able to say "yes".

Yes, I can wear this, I can do that, I can go there.

And I did.

Finally I just have to say thanks to my wonderful babysitters, especially my daughter Angel, without whom this trip would not have been possible.

What do kids want from their parents?

Another bank holiday stretched ahead full of possibilities for cooking and cleaning.  But what about the kids?  What do they want to do?  What do they want from me?  Almost every day off would involve an outing when my girls were younger - that's what my parents did, and that's what I thought family life was all about.   My memory tells me that I loved clambering on castle walls and building sand castles on the beach, but would I have been just as happy at home?  Sometimes I didn't cooperate with family outings: I remember one trip to Bristol Zoo when I spent the whole time sitting on a bench reading 'Charlotte Sometimes'*.  I wonder did my parents think that I was being difficult?

Having a son with aspergers has made me question everything.

He mostly wants to stay at home, and outings stopped being fun because he obviously found many of them uncomfortable or stressful.  Or is he just more honest?

At home, mostly my children want my presence, my attention, and the quiet, smooth running of the house, so that the food arrives on time, the clothes are clean when they need them and the toilet roll doesn' t run out.  Oh and they need to feel safe, so they're quite happy with my OCD tendencies when it comes to pulling out plugs at night and double-checking that every door is locked.

But chores are not something they see as important.  I've explained many many times, that if they help me, I'll have more time for them.  It does not compute.  Getting them to do chores requires logic: explaining they they will need these skills as adults, and they also need to practice them!  So that's about them then, not about housework avoidance for me.

Because aspergers has made me reassess what mothering is about.  I had kids because I wanted them, and I enjoyed being a mother.  I had a vision of the family life that I wanted and tried very hard to create it, even after it was clear that Smiley was going to be severely disabled.

Perhaps my whole plan to make memories with my kids was more about me than about them.  Maybe it's because I want them to have memories of me, when we are all older.  When I signed my kids up for after school activities is it partly because I wanted to be proud of them, I wanted to be able to boast about my daughter the gymnast, which I do...  Perhaps good mothering is actually invisible and unmemorable, happening in the background, below the radar, and keeping the wheels of family life oiled, but no-one notices unless it goes wrong.

Ever read a meaty childhood memoir that featured a good' mother?  I don't think I have.  So it's a tough call, be amazing, and be forgotten.  And at the end of the 18 year marathon, no-one hands you a goody bag and a medal.

The current buzz word in parenting - especially autism parenting - is 'acceptance', and I can see why it would be so important to children, but what does it mean in practice?  I certainly don't know.  You might accept that your son wants to be a gardener rather than a doctor, but what about a child who only wants to eat junk food, and takes no exercise?  When does accepting his preferences become neglecting his health?

I think that I've 'accepted' Smiley just the way she is.  But then I'm trying to stop her grinding her teeth all day, as I'm worried that this awful habit will end up giving her a lot of pain.  AND because it's very annoying.

Accepting the way my life has changed since my son's diagnosis of aspergers is harder.  I thought I'd organised the perfect childhood for my kids: term times in the city and holidays spent by the sea, with sunny days spent on the beach, the company of other children, running free around the countryside, riding bikes,   It turns out that this was not the perfect childhood for my son.   I think I've accepted that, but I still find it heart-breaking.  Again I guess it was all about me, about my idea of a perfect childhood, the perfect life I wanted to share with my children.  But it shouldn't be about me, I guess, aren't mothers supposed to leave their egos behind them in the delivery room?

There is one little word I haven't mentioned though, the one thing that all children want from their parents.  The one thing they give back to us.  Sometimes unspoken.  Love.

*Brilliant, brilliant book, does anyone else remember it?

The house of sick

I'd forgotten what it was like.  Real illness.  Once all the tonsils were removed from this household we have been a very healthy bunch.  Until last week that is.

It began on a Monday when Smiley came home from school with a slightly raised temperature.  So far so like a head cold.  But she was flushed and sweating when I went to wake her on Tuesday morning, so I kept her off school.  You'd feel so sorry for her, she's really stoical, she just sits in her chair, dozing and watching music videos by turn, too uncomfortable to eat or drink much, but my fear of dehydration meant I was giving her fluids 5ml at a time by medicine spoon.  She can't even tell me what is wrong, you just know that something is.  You can see her sad eyes, dull for days, the sparkle gone, her cheeks an unhealthy red.

The next day her wheelchair was scheduled for an urgent repair, so she had to come too.  And threw up.  The first #badmum moment.

Day 4 and the violent coughing began, so it was off to the GP for antibiotics, but by Friday she seemed better and I let her go back to school.

Maybe the worst was over?

Ha! Ha! Ha!

On Friday evening I began to feel a bit wonky.  Then I went to bed and couldn't sleep.  I began to shiver and sweat, but I was so tired and confused it was a while before I realise that some paracetamol might help!  It did, but not with the sleep.  And so began my night time tweeting.  It's amazing the activities that seem a good idea at 3am.  Like using the GHD: if I was going to be sick too, at least it would be with straight shiny hair.

So Smiley and I took it easy over the weekend.  She slept a lot and I actually sat down.  With a book, in the day time!

By Monday morning I was coughing, so back to the GP I trekked.  Smiley went back to school, and had a relapse.  Aspie boy said he was feeling 'so unwell' but I thought he just wanted to join the sick club, so I sent him in to school.  That was another #badmum moment.  He started sweating on Monday night and my eldest daughter began coughing.  And as Day 9 dawned I was tied up in knots: I had been frantically cancelling and rearranging appointments, but this time I was out of ideas.

So I left the eldest and youngest in a cafe while I went to one appointment, which was straight after another visit to the GP to get antibiotics for them.  So criticise me.  There was No Other Way to organise it.  At least not one that my germ-laden brain could work out.  Afterwards my son puked on the pavement outside.

#badmum moment 3.

Meantime the amount spent on GP visits and medicines would have paid for a week's holiday in the sun.  And we might have got better faster too!

I needed a spreadsheet to keep track of all the medications we were on - I haven't had to do that since Smiley was a baby.  We had a temperature chart...with a Leader Board, just to keep things entertaining.

A selection of the meds

The symptoms just kept piling on too, snot, tummy upsets and nose bleeds were added to the mix.  Everything tasted horrible, even coffee!  My son lost the ability to swallow the antibiotics on Day 11 - he insisted that I buy them in tablet form as he didn't like the taste of the liquids.  So began the spoon dance, with the powder mixed up with honey, and my boy mentally preparing himself to swallow:

"Wait, back a bit, down a bit, waaaaait!"

I could happily have poked my eye out...

Then Day 12 dawned.  Smiley woke up smiling.  I woke up after a full night's sleep feeling like a new born colt, but with a clear head.  Perhaps the worst is over.

Of course there were good bits too:  I got to spend lots of time with the kids, especially my "sick buddy" boy, we did things together, synchronised sneezing, sniggering at Sheldon, and stuff like that.  No dieting will be needed for the summer: the extra Christmas inches have melted away.  And it was a good reminder that your world will not come apart if you have to cancel appointments.  Most things can wait.

But it did occur to me that looking after sick children for a couple of weeks has put me firmly back in my box.  Really it was tempting fate to start organising to have a life again wasn't it? I won't be doing it again in a hurry.

And yet.

There is chance now that our planned visit to the cinema this weekend may actually happen...

Bye bye #thehouseofsick.  Hopefully.

"A hug in a mug" Higher Living Herbal Tea: A REVIEW

So what's a coffeeholic doing reviewing Higher Living Herbal Tea you might ask?  Well I didn't get the boxes of tea for me.  You may remember that I have a very health conscious 20 year old.  She's been drinking tea for years, I think the habit began on the weekly visits we used to make to see the Irish grandparents.  At first the tea was laced with sugar, but she gave that up for Lent one year, and then about 10 months ago she began drinking herbal tea, persisting even though she didn't like it much at first.  Now she is a huge fan.  "A hug in a mug", she calls it..

I have drunk herbal teas before: some years ago I went on a diet that involved replacing coffee with peppermint tea.  That lasted about 6 hours!  More recently I have started drinking the odd cup of chamomile tea.  For calming purposes you understand.

Anyway this tea is supposed to be rather special, and it looks pretty on the shelf too!  We got three flavours to try:

Liquorice

I was afraid to try this as I don't like aniseed, but my reviewer tells me that you can't taste that - apparently this is the tea for someone with a sweet tooth.

Green Chai

Having had a bad experience with green tea in the past, I let my daughter review this one too.

"A nice twist on green tea," is how she describes it: sweet and spicy.

Sweet Chilli Tea

So this is the one that I tried.  It was like nothing that I've ever drunk before, the chilli is not hot, it just gives flavouring, and I could taste a bit of sweetness in it too.  Also it goes down rather nicely with dark chocolate, and thanks to that discovery I was able to finish it :)

Our verdict: sophisticated, sweet and delicate, great for lovers of herbal tea who are looking for new flavours.

The info bit

Higher Living is one of the last remaining tea producers in Britain and often described as ‘the Rolls-Royce of tea’.  They specialise in herbal tea and have over 45 years blending experience.  The teas are 100% natural and organic, plus they have over 20 different infusions ranging from the traditional Earl Grey and Green Tea, all the way through to contemporary blends such as Sweet Chilli and Ginger Kick.

The Pity Party

Now that really put you off reading didn't it?

I try to be positive, I really do, but occasionally you get a reminder of why having children with special needs means that your life will always be different to that of other people.  That they will always need minding, always be dependent, always need to be put first, whether they are 16 or 60.  And sometimes that doesn't seem fair.

So please excuse me.  I'm not going to take part in Reasons to be Cheerful this week, even though I know it's good for me.  I'm going to wallow in self pity instead.  For half an hour or so anyway.

You see I'm not a saint.