WE are the EXPERTS – we who live with our autistic children.

This is a Helen post.

Fionn was 5 when we realised we were NOT going to be taught how to bring up an autistic child.

5 when we decided we were NOT going to write his learning ability off. 5 when we realised the EXPERTS are not the people we went to …

the EXPERTS are who we had then to become….the EXPERT on OUR SON....not on autism …just on our bit of it….as we loved him completely and we had him with us for the rest of his life. OUR SON…OUR SPECIALIST TOPIC…our work in progress.

he was 5 years old. We had noticed that in reading his favourite book – every night for months- that it still hadn’t clicked , that a tadpole would ALWAYS grow up to be a frog. So when tables – even basic addition tables came along, obviously he was NOT able to see that 2+2=4 every time. 

Being a proactive but innocent mum, i booked the appointment with the Austistic outreach Services……naively assuming that this common to all ASD children issue had a teaching technique to help….” you know, he may just be a child who never gets tables” she said – willing to write off his ability to generalise learning.

Was she stupid?

so my child could NEVER do a learning task – signed, sealed and delivered…aged 5!

no bloody way!

aspergers made him different – in wiring…in how he processes…in ways of perception…in how he thought.

aspergers did NOT limit him.

It became my mission –

to discover ways to make him learn

I also understood LOUD and CLEAR…that WE are the only experts…expertise by experience. if our child is to have a good life outcome , he or she only will with OUR input – huge commitment – but WE are the only ones who care enough NOT to write off their capacity.

  • we learned and drilled in tables almost wearing blinkers – eye to eye, one to one.
  • we pointed out to the school that he needs to keep revising concepts or they are forgotten.
  • to TELL his secondary school how he works and what he needs – rather than have them faff about and waste time discovering what i know.
  • to learn Irish and French colours through the colours of gaelic and soccer strips
  • to show him how to summarise as you know that come exams he will need all that done- and it will keep learning by rote to a minimum,
  • to bolster his confidence so much that he sees unlimited options…overly so!
  • to be determined and to learn – like your child does- to think OUTSIDE the BOX…when one way doesn’t work , come at it from a different angle…
  • be ready to write a note to the maths teacher, telling him your child needs to understand the mathematical thinking, and leans a gimicky method, he will forget – there was a LOT of advantages to the old fashioned way of teaching maths!
  • persevere...
  • your child is NOT defective…look at him like YOU are the expert…look for the chinks…the interests…the things that he is good at and start there!
  • its a LONGTERM work of art…but it is a one off…be proud of it!
  • Fionn comes regularly and thanks me for knowing him and understanding him so well…
  • That’s my prize:)

mum x

 

 

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WHY DOES EVERY THING HAVE TO CHANGE…when you are used to it?.

written when asked to by @Asiam .it is so hard that everytime you learn how the world world is, you are ready for a completely NEW situation you have to get to understand!😦 Fionn

autisticandproud

Adam Harris, and his aspergers site Asiam.ie  are friends of ours. Sometimes Adam asks me to write something, or sometimes to go somewhere to an opening event.. but i ALWAYS try to help out. This time he wanted me to write about the new year…

Life:

Life is overall good with me. it is though difficult. That’s just me being ME- means it’s difficult sometimes. it just seems that there are ALWAYS changes in what i know about, and i have to keep adjusting to new behaviours, new challenges and stuff. And for me, i have to take more time to adjust, and it takes mum and dad’s help – and i know that i don’t mean that in a babyish way, but i will always need help to learn how to ADAPT socially, and stay SAFE and HAPPY as i grow older.

Socialising:

THIS is a bit…

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how i learned to MIX with people

How i learned how to MAKE and have friends…. it wasn’t always easy.

autisticandproud

how i learned to MIX with people?

for me it was NOT easy to understand people. And it takes times.

And i don’t think you ever you ever really stop learning about people.

normal people know how to MIX easily.

they know how to make friends.

they know what to say and the then know when to say it and everything.

for autistic people it is difficult.

when i go into a room i still can something that is wrong – i mean something that is unrelated to what they were saying, or related to the situation. Like i want to talk ALL THE TIME about things that interest me but might not interest everybody. BUT i try not to, and sometimes i need reminders from mum or dad that i am being a bit ME…unrelated… and it’s ok to say it, cos i have it, a bit autistic. The…

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“feeling like a piece of a jigsaw in the wrong box” – 10 reasons we BLOG!

by Helen…and of course by Fionn.
WHY the blog

autisticandproud

This is Helen – Fionn’s Mam.

I decided to repost a blog which Fionn and my husband and I worked on a while ago.

I (mainly me – but with mu husbands support all the way) encouraged Fionn to set up this blog. NEVER for any reason other than to help other people benefit from what we encountered and learned through Fionn and his aspergers, AND his great ability to communicate that with us.

I initially spent years, since his needs were queried first, “studying” autism

  • theoretically – i read volumes
  • i study Fionn constantly!
  • i have spent years looking at inadequacies in service provision – or maybe inequities…
  • we have tried strategies with Fionn which worked and which didn’t
  • admitting failure is the key to learning…we have to just keep looking!
  • i know how many parents have to PUSH against doors to see childs needs met
  • i KNOW that…

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world autism awareness day 2015

autism awareness in all people could make such a difference!

autisticandproud

It is World Autism Awareness Day 2015.

The day to make people aware of autism and how life is for autistic people and aspies.

i have aspergers. I don’t remember NOT knowing that i had autism.

I’m going to do 10 points that might help you understand MY autism – cos everybody who has autism has different warning signs and clues. We have quite a few in common, BUT we are all a different mix of characteristics.

  1. I stim. I always stimmed in different ways. It depends on how nervous it am. NOW i SING out loud that blocks out the world for me. I used to be always whistling . NOW i have an addiction- that’s my parents word to my PHONE. I fidget at it all the time. It is really difficult for me to stay away from it.
  2.  i have habits you might think are a…

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year 11

Year 11.

Year 11 has been my hardest year at school.

The AMOUNT of work is much bigger in year 11 subjects and the work itself is much harder. The rules about each subject and how its exams are structured is VERY confusing for me.

Exams talked about a lot – which scares me – I think i UNDERSTAND the work now , but I am worried that i might not realise how BIG a thing the GCSE’s are.

Teachers then do “timed assessments” which to me are very difficult, cos i am a slow writer, am NOT good at using time WISELY and efficiently. So  sometimes i am finished waaaaay too early and other times i don’t GET finished.

Sometimes you have to count WORDS- which i am awful at – and sometimes you don’t. But i get confused as to when  i need to word count and when i don’t.

There are some MODULES this year – they are a fraction of your full GCSE exam. BUT not about all my subjects have modules and they may have coursework and a final paper.

I find the difference in the LAYOUT of which subject has which kind of exam really hard to keep up with.

My Classroom assistant has been really great cos I have been off for a while (a month) with headaches again- like in 2013. So she took notes in every class i missed and then her and the SENDO MrO spent LOTS of time helping me settle back AND cover all the work that i missed.

It was very unsettling at the start of the year to have so many new teachers. AND new form class. BUT now i have a new group i hang out with – some from my last class, and some from my new one, and some from other classes. They came up to see me in hospital, and the form class sent me a card.

So overall it is a bit more stressful and much more confusing.

So I am more under pressure and i feel it. NOT like a melt down pressure, just bogged down with work. Sometimes I leave the work til the end of the weekend and then i get really angry with myself.

it doesn’t get easier. An this year the CONFUSION has been a bigger issue for me.

To be honest i even wonder STILL did i pick some right subjects cos they got so much different as exam SUBJECTS than as fun.

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OUR VIEW on YEAR 11.

I have to say as a parent (Helen), i underestimated the challenges this year has caused for Fionn – in his own words he is “very happy” at school.

His school is and has always been VERY supportive to Fionn and to us. His SENCO makes very regular contact with us at home.

His classroom assistant is closely aware of his “worries” and even subtle “signs” of drifting off. Has revised work missed with him.

He has a network of friends he has made who he trusts and mixes well with – in and out of school.

This school year, though,  has without a doubt been a more challenging transition for Fionn than primary to Post primary.

As you know with any aspergers child, every different scenario is a new learning situation.

This year Fionn has had a LOT of support in school, and at home, and yet the layout of examination subjects GCSE structure is the main difficulty and it comes up throughout the year in so many ways:

…..timed assessments …

…word counting ….

….coursework ….

….modules …..

…..some subjects having NO modules at all….

are ALL unclear in terms of his understanding of the importance of each…and predictably he finds it very hard to mentally “flick” between these concepts and remember which is where and when…

In hindsight we were NOT prepared for the confusion he found…..be ready folks!

Helen