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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 

 

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being diagnosed. Autistic.

This is Helen (mum) here – for several reasons. Te first is Fionn has not been well with a headache all week. Secondly this is as important to ME as to him. Statistics about autism diagnoses falling further and further behind. Currently in our local area 217 children are awaiting the assessment for diagnosis.autismThis makes me BEYOND angry. Diagnosis is NOT a handbook on the “easy tips on raising your child with autism”, BUT diagnosis is :

  • an entitlement to help,
  • an entitlement to advisory services access,
  • an UNDERSTANDING of why your child is different- not wrong.  
  • a START to you and them on the rod to providing best you can for him.
  • And even an acknowledgement that you weren’t just a fussy mother!

Fionn is now 15 and managing well in a mainstream world but not without US.

Growing up for an autistic child is a constant stream of “new situations” which he needs help with when he meets changes.

  • But without HIM knowing WHO he is, and
  • WHY he needs to ask us extra questions about what may seem normal to others,
  • WITHOUT his acceptance and enjoyment of his “autistic” or “aspie” traits,
  • life for him, and for ALL of us, would be incredibly different, and without doubt,
  • more difficult!

THIS is a blog we both wrote on the IMPORTANCE of having that assessment. EARLY.

it’s easier KNOWING i have ASPERGERS for me…….( and for me- mum).

I have aspergers.

i love having aspergers.

i love my differences.

I now love the bits of my personality it gives me.

But the new tests they are going to use when they diagnose people will never say people have aspergers.That really makes me so angry.

by knowing i had aspergers i understand WHY i do things…and then i let my principal explain with m to a few friends that it was just how I am…and then we told a few people outside my class . When your friends KNOW, they know you are a bit weird, no problem. They be looking out for you a bit. They don’t wonder what you are at.

When I went to secondary school mum and I agreed we needed to tell my new class. So form teacher did this at beginning of year. She did this thing where she told us something different about HER…and then we all did it in turns. Some people had medical conditions, some had won things. I said i had aspergers and it made me a bit different but that i could do everything in my own way. NOBODY has given me any trouble about it.It’s just ME!

IF I DIDN’T HAVE MY DIAGNOSIS MY LIFE WOULD BE VERY DIFFERENT….i think.

  • I wouldn’t understand myself
  • i LOVE being who i am and how i am!
  • Mum wouldn’t understand me
  • Mum and Dad would not have made me try to mix the way they did.
  • I wouldn’t have friends
  • I would NOT be able for team sports
  • i would still be very clumsy.
  • I would not be able to work in group-work in school
  • i would have have had no assistant in my schools
  • I wouldn’t be writing on this blog as I wouldn’t have this blog
  • I wouldn’t have extra help in anything
  • I probably wouldn’t be as good in school cos teachers wouldn’t “get me”
  • I would be really antisocial and unable to mix
  • I would be socially awkward and feel weird
  • I would not know why i was different and that would be hard!
  • I wold not be able to explain to my class i was different cos i have aspergers.
  • I would maybe be bullied
  • I might have had no choice in going to ordinary school cos i might not have been able to cope and maybe would be at a special school.
  • my life could be so different
  • and not in a good way!

my LABEL is information.

it explains my differences and then I can learn with help how to manage them.

http://www.irishtimes.com/life-and-style/health-family/parenting/when-is-a-syndrome-no-longer-a-syndrome-1.1583248?page=1

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Fionn doesn’t SUFFER from Asperger’s Syndrome. (from Helen)

He isn’t an autistic boy.

He is  boy who has blue eye, fair wavy hair, a big smile, a sister and 2 brothers, and has aspergers….it is a PART of him – and a part we love.

We DO have to explain rules of :

  • social situations,
  • appropriate responses,
  • small talk,
  • organisation,
  • times NOT to speak,
  • subtle social cues at this stage so that Fionn can manage a “mainstream” situation.

It’s another LEARNING for him.

NOT an attempt to change him one bit – purely a way to help him in a situation that he doesn’t naturally understand.  

His learning is ONGOING, but when he has learned a “new situation” as he calls it, he retains that information for the next time….not a lot different that another subject in school – except it’s MUCH more important.

LOTS of people ask “how” and “when” we told Fionn he had aspergers.

We do not profess to having been told to…being told how…but in the same way that if your child asks you why he can’t run quickly you could explain he has asthma – that means…X, Y and Z BUT you are still YOU!….

These blogs we wrote over time in answer to parents questions.

in OUR case, it seems Fionn found understanding himself like fitting into a puzzle he had already got in is mind. It fitted him. he is confident and HAPPY to be different and haooy to be HIM!

Explaining himself to others is second nature now. It’s definitely stopped people wondering about him, and been a positive piece of information to us and him.

i HOPE these help other parents. 

https://autisticandproud.wordpress.com/2013/02/04/you-have-aspergers-son/

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https://autisticandproud.wordpress.com/2013/02/10/the-strengths-that-my-aspergers-gives-me/

https://autisticandproud.wordpress.com/2013/04/04/my-favourite-fionn-blog-i-like-being-different/

https://autisticandproud.wordpress.com/2013/06/17/today-i-saw-man-of-steel/

https://autisticandproud.wordpress.com/2013/07/21/words-id-use-to-describe-myself-with-before-my-diagnosis/

https://autisticandproud.wordpress.com/2014/06/03/before-and-after-i-understood-and-learned-about-aspergers-3/

https://autisticandproud.wordpress.com/2014/07/02/different-is-cool/