Fred Foundation

After a recent series of perceived derelictions of duty by friends, my wife and I are undertaking an audit of all our friendships.  It seems that some friends are of more use than others when the going gets tough.

I don’t judge them for it.  When my wife and I first became parents, I noticed that a natural gulf opens between those who have children and those who don’t, and i’m wondering whether something similar happens between those who have more problematic lives and those who sail through life untroubled by setbacks.  Certainly some friends are markedly better at imagining the day-to-day  pressures my wife and I are under.

Others cling to their impressions that we’re fine, based on some upbeat conversation we may have had six months ago.

Some of this is our fault.  Early on we couldn’t bring ourselves to keep everyone up to date with each tribulation we were going through, partly because we didnt have the time and partly because we didn’t want Alex’s introduction to the world to be a  hard-luck story.

Still it’s hard to understand why some erstwhile close friends have stopped making contact at all.  Do they think we’re jinxed?  Or are they convinced that we are so radically changed as people that they would no longer be able to help or cheer us up?

I’ve  had this out with one or two friends whose absence I felt especially keenly.  Interestingly, old friends deal with it less well than new friends.  I suppose more established friendships resist adjustment because of the weight of baggage and history they bear.  Old friends can feel more resentment at having the quality of their friendship questioned or being given directions regarding what is (or is not) required of them in a crisis.

I can feel some friends’ grips tighten around their perception of me.  They are unwilling to let my function in their lives change, despite the colossal alteration that fate has wrought on mine.  More than once, I have offloaded on someone how tough it is getting from one end of the day to the other, how exhausted my wife and I are, and their solution is to offer to take me out on a massive late-night drinking session.

The truest friends are the ones who identify what would actually help us, and sincerely offer it.  We never take them up on their offers.  Just feeling understood is like medicine.

Taken from About A Boy – Tom Bickerby’s diary on his son Alex, who has Down’s syndrome.  This column appears in The Times Life section every Tuesday.

“DO NOT throw Jesus out of the window he doesn’t like it! ”  Our shocked bleary- eyed,  neighbour heard me shouting  this at the boy  this morning  as a small icon of Jesus flew out of the upstairs window followed by a procession of  ‘all of Daddy’s shoes’ with no laces in them (removed by him).

But i have some sympathy with him I thought - i throw Jesus  figuratively out of the window on a daily basis   Especially  at the blackest times - which are many at the moment.

 I open the  cupboard and am dazzled by some   sort of  amazing art installation, then I quickly realise  that his ripping OCD has now reached the kitchen cupboard.   A  beautiful sea of  bare silver tin cans - but which are the tinned tomatoes I need (now!)?   5 opened and decanted tins of baked beans, tomato soup, sweet corn and kidney beans  later i finally  find the tomatoes…… then all the shredded coloured labels stuffed behind the skeleton-like cookery books devoid of any covers.

As everyone says he is such a good looking boy.  It is lovely to hear but makes me  sad too.  Especially when you see young girls looking at him in the street – of course he is completely unaware.

I suppose that is why they call  autism the blind condition – outwardly no signs.

Love takes every ounce of energy.

I used to think it was nice to live in a house with three loos – even though there is no room to swing a cat in here….until he decided that the next bout of repetitive behaviour would be to block all of the loos (after he has used them mind) with whole loo rolls and watch all the water and whatever else -overflow  onto the various  carpets.   It has taken me all morning since 7am to clear up.  How long it will take the carpets and ceilings to dry out i have no idea. .  That’s it a house ban on  all loo rolls….i must hide them all over the house and try and remember when i am sitting on the loo where i have put them!!

I was  scared about the onset of puberty and what it might bring for him and us.  But, I didn’t realise it would bring  so much more language.  Happy about that.

A very brave question from the mum of a newly-diagnosed child.  I was asked this the other day on the telephone and i could not answer.  I cheerily changed the subject and chatted on about early intervention being the best course of action.   I mean, how can you tell a mum,with a newly diagnosed child, the truth of what lies ahead and the massive fights we have had for help that nearly killed us?    I remember when my child was in this newly-diagnosed position eight years ago, the mum that i rang for advice, started crying down the telephone.

Yes – ridiculous - pronounced like that. 

 His catchphrase of the moment – lifted from a Jeremy Clarkson  rant on T.V!

It covers most things.

Feeling exhausted and the school holidays haven’t even started yet.   Looking forward to a school holiday summer ’staycation’  of trying  to have some fun,  getting the  siblings to study for exams a bit and at the same time  trying to stop him wrecking the house because he is so bored. ….Roll on October it has been a very difficult past few months.