Fred Foundation

Spent the day cleaning the house.  Two of those hours were spent hoovering and dusting his mattress, changing sheets and wet wiping every inch of his bedroom.  Have to do this weekly for him as he has a severe dust allergy – as well as the  hay fever, asthma, excema, peanut, latex allergy, (requiring an epipen!)  Of all of these allergies the dust allergy is a killer to stay on top of! I haven’t been so good this week and i can see the huge red circles creeping back again under his panda eyes.  Having to keep all the windows closed in this heat because of  severe hay fever  in this heat seems unfair but need to keep the pollen out. 

Ho hum, now to put his furry toys in the freezer – hoping there is enough room.  I will freeze those dust mites out if it is the last thing i do.  Oh, and not forgetting the pillows, chuck them out monthly and buy cheap new ones was the nurse’s advice.  Otherwise i have to boil wash them and they take hours to dry!

I’m going to  

Smash through all your barriers

Kick every one apart 

So nothing stands between us 

And I can reach your heart

I’m going to 

Scream away your silence

Destroy your blank disguise      

Paint the colour in your cheeks

Switch the light on in your eyes

I’m going to

Chase away each fear you have

Make them run and hide

Tear off all those Russian Dolls

That trap your love inside

I’m going to

Fill your days with sunshine warmth

Enough to melt the frost

And bring to you a childhood

Like it never had been lost

© Irene Ewen 16/08/09

…as I pen another letter to the Social Services who won’t even match the minimal  help  I was getting before I moved house.  Seems they must think that my changing post codes must mean my son has miraculously shaken off his autism and got better with age.  The social worker came round to interview me and fill in another Core Assessment – “what stresses you out the most she asked?” - “the constant fight with Education and Social services to get any support at all” I said- when I get the assessment back I see  she hasn’t written that  bit down.

“If a person takes no thought about what is distant, they will find sorrow near at hand”  If we  don’t think about the wider world, we will grow narrow-minded and sad.  That is roughly what Confucius was driving at in this observation.The wider world may give us cause for concern but at least it gives us perspective. 

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I had the radio on this morning in the car and  heard there is a new book out today about Charles de Gaulle.  I didn’t know that he had a daughter with special needs whom he adored.  When she died he and his wife spent a long time sitting by her grave until he said “Come, let us go from here, at last she is like other children…”

Just returned from Horseboy Camp – great but absolutely exhausting.  Met some great families with autistic children but how hard it is for them.  The constant attention required would kill lesser people.

 Listening to Radio 4 Desert Island Disc podcast with Dame Stephanie Shirley - an amazing woman who has done and is doing so much for Autism.   But, even she had a breakdown and ended up in hospital  whilst she was looking after her late son who had autism – makes me feel slightly better about having a bad day.

Great excitement today, a black washing machine was spotted in the latest Tesco catalogue…”Buy black washing machine “- good language methinks…then later… ”take black washing machine in a white van to house”  Even better.

Very sad news in the papers this week to hear about yet another desperate mum killing her autistic child…

Happy news that our friends have been successsful with their Special Educational Needs tribunal. Both of their children have been awarded full funding at the specialist schools of their parents’ choice and the local authority ordered to pay for them.  The Education Authority were NOT able to prove that the schools they were recommending could meet the children’s needs.  A victory indeed – but so much stress and money involved to get to this point.

Driving to school this morning he asked ”Where’s my swimming stuff?” What a breakthrough – i nearly crashed the car - “In the back of the car!” I replied trying not to whoop with excitement . Whatever next we might even get a “Why” ,”Who” or “What” question one day. A  day full of hope today.

He keeps asking me to drive faster especially when we go down hills!    I notice he turns round and looks through the back window when I do drive faster. To  see, i imagine, how fast we are actually going or maybe he loves the blurred images.  That must explain why he looks behind him when he is running along!