Before and after WE understood and learned about Asperger’s.


Fermanagh-20130312-00165

 

This is a picture of Fionn aged 3, we leave hanging in the hall….its a reminder of how confused and out of his depth he was. He was LOST…all around him was unnatural to him…This is Fionn half way through his Nursery year – in the Christmas Play.

At home:

  • Fionn had a great vocabulary and a very polite private school delivery!
  • was a happy wee boy with his immediate family and a few close friends.
  • Cousins aunts and uncles in the house would throw his confidence.
  • He would call me from the door “Helen I need you”..yet he wouldn’t come in.
  • Yet he hugged us, hugged my parents…
  • When my younger nephew was standing between Fionn and the DVD he wanted on, Fionn would swipe him aside…yet when i would take Fionn offside, he was SO upset, as he didn’t genuinely see what else he could have done.
  • People would visit, and Fionn would disappear…on his own…his own with his BACK to the crowd.

At nursery School:

  • He would play alone, when asked to go and play with so and so his answer was so tragic..”I don’t know how”.
  • When it was time for the quiet room, Fionn headed to the toilet, which saved him being left out of the seating – and then came in and sat beside the teacher.
  • He had very poor fine motor skills and wore Joggers as trousers were beyond him. Sport’s day would cause a melt down – why did he have to do that?
  • Dinner was hand to mouth…irrespective of texture.
  • He was the only child ever to boot up (unallowed) the class PC and INSTALL a CD-ROM he liked the look of, first amazing the teacher, but again completely unaware that there might be a “should I ”issue.
  • A child may spend ages building a tower of bricks, and in an attempt to be “funny” – Fionn might walk over and toss it down. Then not understand why that upset someone. If he thought it was funny…was it not?
  • Fionn would come over to a table of jigsaws, and others would leave – but he didn’t mind. He was brilliant at jigsaws!
  • My friend Paula, had a daughter in the class…she invited him to Dervla’s birthday – the only one he was invited to. I stayed too…and THAT was the day i cried.  I watched him spend the entire party, playing in a bedroom with toys – avoiding the crowd. not once did he use the bouncy castle.
  • We called him out for cake. and I saw the fear on his face, when he came into the kitchen full of children. He was petrified. Couldn’t move…and nobody invited him to sit with them.
  • he was stuck …a LONER….!
  • We REFUSED to let him progress with the class he had spent the year with – and repeated the year…the best thing we ever did!

That was when we ASKED questions and we decided to actively find out what was “wrong” with Fionn.

A diagnosis was a label…we dithered with what that meant, and very soon decided that Fionn NEEDED this label in order to make progress. I remember coming back to school where i taught , having got the diagnosis and a friend putting her hand on my arm…and a pitying tearful “aw Helen” – which made me react very strongly…”He has not got a terminal diagnosis. We will just have to help him manage differently!”

And we began to arm ourselves with basic information and determination that Fionn, although it would initially challenge him more, would have a mainstream , fully integrated education. We would support it….and we have done since.

Helen…x

now Fionn can take over…

This is Fionn:)

When i was younger there were things my Asperger’s Head used to make me want to do. 

Mum used to always ask “is that you or your asperger’s speaking”…and then say…”Well what should you REALLY do”…and i knew that i wanted to be able to do what i want, make friends, play football, and now i know i want to be independent and make choices about what i want not what i can manage cos of my aspergers head!

  • Aspergers made it HARD to be sociable.
  • I didn’t know how to start a conversation 
  • how to take turns and share, 
  • how to know when to talk
  • how to make real friends – i could run in a group but i was just really following the group
  • how to know what to talk about – cos i had my obsessions like Doctor Who and Star Wars and i wanted to talk about them.
  • i had bad concentration
  • i was clumsy
  • i didnt understand emotions
  • i didn’t get other peoples feelings.
  • i was always anxious about “what ifs” – and we spent ages talking about these.
  • i bit toys..my cousins used to hide toys when i came over cos i bit them so much
  • i bit the heads of action figures.
  • i constantly fidgeted…and had to have stuff in both hands if i was going anywhere
  • i hated changes cos they were hard – like a sub teacher or a class trip
  • it was hard to learn things at school like adding tables
  • methods would confuse me.
  • my writing was bad!
  • my drawing was bad!
  • if someone had bad breathe i would say it out
  • if someone was different i would say it out loud – not in a rude way..just cos i noticed.
  • i always needed to know what was next – even at home i had a visual timetable.
  • i couldnt stop moving.
  • i used to find it really hard to get to sleep! and used to waken up lots and start reading or playing with figures
  • i smelled everyone and if i couldnt like the smell i had to move
  • i would shout out at loud noises.

It has taken a lot of work to get past these things, but i did.

I am always going to be austistic but now I understand when it is my autism thinking and not me, and i make a choice do i do the easy thing, or the thing i really want to.

Now i am happy with the world i live in!

from Fionn

I know Fionn’s asperger’s will always provide new challenges – for instance at the minute we are tiptoeing through the more detailed bits of the facts of life…and is very delicate tiptoeing!

its a work of art – that is under construction.

But hopeful Fionn’s resilience and understanding himself will assist us both as he grows up!

Helenx

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2 comments

  1. This photo reminds me of my son. We have those photos of him appearing terribly uncomfortable among a band of happy pre-schoolers. At his pre-school Christmas play, he bailed out, though, just as it started, so we didn’t even get the photo.

    • what age is he now Grainne?
      there is that lack of understanding of the world…its measurable in wee pictures like this…
      but i love it, as is a marker of how real his aspergers is.
      you tend to fing people now who meet him, say…sure he is great, and i can’t explain what this picture says!
      H

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