Reasons to be Cheerful 30.5.13

It's been a funny old week: the big event was my 20 year old leaving to spend the summer in the US.  Exciting for her, and a bit emotional for me:

At the airport...

But a lot of other things happened too:

Twitter

My son has decided that he is into board games.  But not your average Monopoly or Cluedo, oh no!  These look just like video games, but have actual boards and dice.  The first one he wanted was The King of Toyko, and I just knew that the local toy shop would not stock it.  So I asked the twitter machine.  And within minutes I had loads of suggestions, including a very accurate one from Magnumlady, whose son just happens to like the same games!

His messages have opened up a whole new world for my son.  We visited Gamers World Dublin, bought the game, and discovered that it also hosts various gaming sessions.  My son's teenage social life may be about to begin :)

Forensic Science

It was a three week course.  He had chosen to take it, but the first session coincided with another difficult patch.  Thanks Aspergers!  However using every trick up my Mammy sleeve I got him there that first Saturday, though he was late and unwashed.  Week two looked even more challenging, and I had to hang around the campus all morning with Smiley in case he wanted to come home...By week 3. he was feeling better and almost skipped out at the end of the morning, waving his completion certificate.

I'm very proud of him.

The Ice-cream Party

The wonderful special needs social club that my daughter attends was invited to an Ice-cream party in aid of Downs Syndrome Ireland last Saturday.  The weather was kind, the ice-cream was cold and she won a prize!

Me

I'm coping okay with Angel in America: regular texts have helped.  And by Wednesday evening my bike was fixed, and the shower was too.

This morning I was a little teary, thanks to the grief over my parents, which hits at random moments, mixed with a little self-pity too.... But - except when the kids are sick - Thursdays are now Circuit Training Day, and after the hour's workout I drove home with a smile on my face, ready for a night out with @Irishautism and @iPhones4Autism at the Social Media Awards.  Happy Days...

24 comments #R2BC

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She's leaving, on a jet plane ..

You have another child?  Sometimes I'm asked that question.  It shows just how much special needs dominates my life.  And the answer is: Yes, I do.  She's twenty now, lives at home (mostly) and attends college, coaching young gymnasts to pay her way.

But she's leaving, though luckily I DO know when she's coming back again: mid-August if all goes well.  But it will be a long summer without her.  She's headed for the US next week on a J-1 visa with some of her friends.

I thought I'd be desperately sad.  But actually it feels right.  My job is done, she's grown up, got her wings and taking flight.  She organised and paid for the trip herself, and I couldn't be more proud.  She's going to places I've never seen, doing things I've never done, and not allowing anything to hold her back.  Not the recession.  And certainly not her siblings with special needs.  And that's the way I wanted it.  

Still the rest of us will miss her.  A lot.  She's the cool big sister to her siblings, she makes them laugh and gets them doing stuff, and takes an interest in their interests, however strange those might be!

I have an easy relationship with her.  She helps, babysits, cooks, and is currently my number one going out buddy too!  Who does she choose to go places with when her exams finish?  Yep, that would be me.  I will really miss our trips to the cinema, and I think I may have to set up a geek film club for those of us who like watching totally ungrownup films like Star Wars.  Is that a good idea?

We've also continued our little trips to the North, and it does feel rather daring going to another country while the kids are in school :)  It's so easy to do now, it takes less than an hour, the border is barely noticeable and the days of searching frantically down back roads for a petrol station with a working loo are long gone.  Service stations, how we love you!

We were in Newry again this week and the savings in the pharmacy and the supermarket meant the trip paid for itself.  Lunch for two cost less than £8 and we had a view too...

Lots of good memories, hopefully for both of us.

"Two and a half months is long enough to be away, Mum," she said.

I think she will be looking forward to coming home too.

20 comments Angel, being young, big sisters, jet planes, leaving on a jet plane, Newry, road trip, service stations, The North

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Silent Sunday 19.5.13

30 comments #SilentSunday, May 19 2013, Silent Sunday

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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!

16 comments #R2BC, Anne McCaffrey, Aspergers, Dragonflight, meltdowns, watch-whers

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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

------------------

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.

25 comments Collin Brewer, disability, so wrong

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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.

15 comments book launch, friends from the square, posh frocks, road trip, special occasions

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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?

24 comments Aspergers, mothering, Smiley, what do kids want

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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.

14 comments #thehouseofsick

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