Sunday, October 26, 2008
Found stories and lists and a book I read
This morning I found a word document that had a letter to Alec and lists of things he was doing at the time. It was back in November of 2004. It was just before we would find we had autism in our house and didn't know it. Alec has been autistic from birth, when we knew the characteristics of autism we could see them in Alec.

It has been hard, especially the early days, Alec had very little language, his speech was delayed and we had behavioural issues. Alec was bombarded, he suffered terrible sensory overload, he would literally meltdown and be unable to function. We are so lucky where we live, there are some wonderful speech therapists that deal with autism and we have an Autism Association that runs an amazing early intervention program. We did private speech once a week and centre sessions twice a week for 2 years, Alec did OT and a program of mixed therapies tailored to his needs. He went from having no comprehension and Echolalia ( is the repetition of vocalisations made by another person. In Alec's case he repeated anything he heard, us, Thomas the tank engine, and as he learnt more he would use snippets of programs to form his sentences, if you can't form it yourself get it from somewhere else, and he did)

We have come so far but Alec will always be autistic, there are no cures but wonderful therapies unfortunately there is a whole other side that blames vaccinations and looks for a cure and hates people like me which I find so sad, I have no energy to hate anyone everything I have goes into my family. I just read my first non-fiction book in about a decade, I try to keep my reading to the escapism genres. I made an exception for this. This book, Autism's False Prophits (bad science, risky medicine and the search for a cure) by Dr Paul A. Offit lays out the facts, shows how the whole hysteria about vaccines was enginered by someone doing bad science, Andrew Wakefield is actually being deregistered by the medical board in the UK because of his poor science and the falsehoods he included in his papers. Then there are the lawyers who can see a huge pay day if the can twist the emotions of a jury and actually convince people that children have been vaccine damaged all the time refering to these children as souless and damaged and many other derogetory terms.

Alec is not damaged! He needs help, guidance and understanding. He is in mainstream school with an aide and an outside agency gives guidance and strategies, I wish it was more but we do the most with what we have. We can see little bits of autism when we look back into our families, no vaccination caused this.

and now if you can sit through it this is what I wrote between November and December 2004. I am off to see if I put this in his scrapbook, oh and Shrek must have been popular here, you will see what I mean at the end.

Some days we just get so busy that it is so hard to stop and appreciate the wonder of seeing you grow and learn. You have been a little difficult lately and won’t sleep in your own bed anymore. We have given in and made you up one in our room. At night we have to lay down with you in our bed until you fall asleep then move you to your bed.

You just blew us away on Sunday, I walked into our bedroom and you had some balls, you saw me and said..

Look mummy juggle balls

And that was exactly what you did. My heart swelled so much it hurt and bought tears to my eyes, just the simple thing of you sitting juggling balls made me stop and think about all the things you do that give me so much joy.

  • You share (some of) your toys with Riley, making sure everyone knows that you are sharing.
  • You walk around the house in mummees shoes
  • When daddy is at work you go around the house and tell mummy all the things he has done
  • You copy everything daddy does when he gets home
  • Your very special way of removing the caterpillars from the vegie garden
  • How good you are at watering the garden
  • The way you remember how I showed you to look at the clouds and how you like to lay on the lawn out the front and look at the clouds while you wait for daddy
  • How you know what is going to happen in the book before I say it because we have read them all so many times
  • The way you help with the laundry
  • Your fascination with water
  • Your love of babies, how you go up and touch them and pat their heads no matter whose baby it is
  • How excited you are to see Sean at playgroup and how you run up and give him a hug
  • The way you remember places we have been like the train station and the hospital and doctors and now the shops
  • The squeals of delight when you see puppies at the Joondalup pet store
  • The way you say Mac the cat (Mac a cat)
  • Your love of train sets
  • Your dinosaur roar (even though you call them dragons)
  • When you sing twinkle twinkle star oo oo ar and old MacDonald for me
  • Pushing Riley along in the pram
  • When you pick up Riley’s baba for him and tell me about the bottles for the baby
  • When you tell me about your baby brother Riley
  • How beautiful you look as you sleep
  • The way you wriggle until you fall asleep
  • The way you squeal when Riley gives you hugs in the morning
  • How you have eviscerated your poor beloved eeyore and walk around saying eeyore die eeyore die, all because I told you he would die if you kept pulling out the stuffing
  • How much you love your dad
  • The way you decorated the wall in the kitchen for me and bought me to see your ‘pitcha’
  • How you didn’t mind cleaning it off when I handed you the cloth
  • The way you make all the animal sounds
  • How you blew the alter candle out when daddy took you to church and how pleased you were with yourself
  • How when something is about to happen to R2-D2 on aar wars you run and say… “Oh no mummy… D2 D2!”
  • The way you recognise the music from Shrek when we hear it on the radio
  • How each morning when daddy goes to work you tell me he has gone to catch the train

November 30th

Well we bit the bullet and went to Ngala with you and got some advice on sleeping. We didn’t realise but you had become the boss and we were slaves to your every whim. We bit the bullet and slowly laid down the law. You are pushing at the boundaries as much as you can but we are right there to show you the right direction. Since we have been better at getting you to sleep we are seeing a happier boy already and we are also realising that sometimes when you are angry it is because you are so tired you can’t communicate properly.

December 9th

All of a sudden you don’t like me to leave daycare, you love going you just want me to stay too. I called and checked on you yesterday and Georgia said you were having a wonderful time and being wonderful too. We hear you now sitting and singing songs to yourself while you play. It has been such a big year for you, moving house, getting used to a new and demanding baby brother, learning how better to express yourself and how to get your own way.

I can’t wait to see what 2005 hold for you Alec, we will be there with you every step of the way to make it the best year we can for you..

Love Alli and Michael A.K.A mum and dad


Blogger Heather said...
This is wonderful to have. For you and for Alec.

Blogger Jen said...
I really enjoyed the book for the same reasons as you. Jacob is not a damaged child nor is his existence a tragedy. *Hugs*