20140508_0016_UTV_Spirit_NI

the asperger’s SUBTLE clues

Sometimes people talk to Fionn, or they watch Fionn play and interact with others, and are very quick to say “ach, but i mean he is fine now!”...as if to say “has he grown out of his aspergers?”, or “maybe he hasn’t much wrong with him”...we have family members who really do NOT see how being an independent adult is such an aspiration and such a challenge for any child with Asperger’s Syndrome.

“he hasn’t much wrong with him” – he hasn’t ANYTHING WRONG with him! 

he has- and will always have-ASPERGERS. 

his wiring is a bit different that everyone elses – and why would we want him NOT to be himself?

YES – we have had to find a compromise between making Fionn resilient in a mainstream society setting, and embracing the way he is!

At times he uses his autism strengths, at other times he draws on the learned behaviour patterns he has mastered to integrate in school and in broader context.

As he gets older, the issues he encounters change, and then we have to look at other coping mechanisms. 

But despite his being a great aspergers ambassador, despite his ability to give a very clear interview, describing brilliantly the way his condition affects him, and the adjustments he made, Despite the fact that he has learned:

  • empathy and compassion
  • emotions – beyond the basic ones
  • to understand other peoples’ feelings
  • how to manage friendships – most of the time
  • how to read faces
  • when to recognise sarcasm.
  • how to decide which group to join onto .
  • how to listen before you blurt out your special interest
  • how to interpret “appropriate” emotions to a situation
  • to appreciate the humour of his inability to understand idioms, 
  • to laugh at his literal tendencies – this week Jimmy asked someone to call back as “i’m in the middle of my dinner”…poor Fionn almost exploded laughing.
  • to take turns.
  • to make eyecontact as much as he can.
  • to try not to twist his mouth or raise his shoulder when he is nervous
  • to STOP calling you to see HILARIOUS clips on youtube.
  • to “cope” in contact sports rather than back away – to learn positions where he uses his aspergers strengths to take part fully.
  • to be secure in himself most of the time
  • to be able now to hear me have the discussion INTERNALLY to convince himself to do something…the what is the worst that could happen?…when did that happen before?…so why would it happen now?…so what is your aspergers making you think?….so what do you really want to do?…so when have we been wrong?…

but there will ALWAYS be little things with Fionn. thankfully. they are a part of his charm!

little things which throw him a new situation and he is unprepared, he comes like a rabbit in the headlights.

I wanted to share with you a few social situations , a few little examples, where Fionn still needs help – these I am sure are issues and situations many of you as parents Or as Aspies recognise, and that’s why i wanted to let you see that while Fionn is a hugely successful example of how an Asperger’s Child can learn and be happy in their own skin, that he is no different than you…or your child. So there is NO MAGIC trick….it’s about finding a path through situations for you, your child which taps in on their strengths! We never pretend it is anything more than this. We love him, as we do all out children, just the way he is! And in the same way as with all our children, we want to make life for him as comfortable for him as we can and are there to help.

That’s all – it’s about being a family – of creative thinkers, with  great sense of humour!

  • Today Jimmy (Fionn’s dad) was totally engrossed in a Gaelic match on the tele. Fionn spoke a few times, and realised that dad wasn’t really in a chatty mood – and i tried to explain that he shouldn’t try to chat dad during the match, but that i was here… Fionn became really anxious – not in a melt down way, but in a completely unable to keep quiet and therefore ask MORE irrelevant questions, entirely random eventually as he really was on autopilot! This is a similar reaction to what would happen if someone corrected Fionn at dinner table, for something minor, he perceives it as talk to cover the awkwardness…but today he managed by sitting over with me, on the other sofa, getting the feet in under me, for compression, and eventually he himself went off and “got his pad” – a blank A4 spiral bound book, that he always has to draw in, From his earliest days he has carried a pad. Initially drawing what was a series of lines which he called a “machine” , then drawing matchstick football teams with names above them , and now having developed into drawing footballers – very linear pictures, depicting moves in a game. So today to keep himself from taking, he occupied his HANDS by sketching – so drew on another sense. By the way, his sketches are ALWAYS in black and WHITE…IMG_00000299

 

  • another very SIMPLE situation which we had this week, was when we had popped into town on Friday. Fionn phoned me – and i knew straight away, he was a bit uncomfortable, so had to slow him down to get the story right. the PROBLEM was that one of his closest friend had called him, and asked him to go down town. …Now what is the problem there?,,,to Fionn he couldn’t explain WHY it was a panic, all he kept saying was, “i just want to stay at home with my family today”. So i suggested he rang his friend back and offer that HE could come over here? He felt okay – checked it through “so what do i say again?”…then hung up. A few seconds later another call from Fionn,…”he says he can’t come over he has to be somewhere at 6, so now he wants to know will i go to Park and play football with him!”…again i asked what was the problem there and got the same nervous “I want to stay at home with the family in case it starts to thunder again so i can come in”……okay…not getting there yet, So i suggest “why don’t you SAY that to him, because it IS a bad day, and ask him if he’d like to pop over and that we can bring him to wherever he needs to be for 6?”….again he rehearses what he has to text and does… calls me again…that’s fine. And they spent a very relaxed afternoon playing football, watching tele, hanging out…. So just before he is left home, the friend says “so Fionn, will you maybe come into town next week?” and he looks over at me for help. So i say.! C i think Fionn doesn’t know what going into town entails? Is that it Fionn?” “yeah, kinda” So i ask him “is it a bit hang out C, with lots of people ?” he answers NO it isn’t its probably him, Fionn and M …so i suggest Caoilte too (my younger son who is so close to Fionn and reads him very well) – so now that he knows it is a few close friends walking around a few shops, he is fine. 
  • i think the FEAR in this one, was the same as the recent day when he got a text from an ex-class mate from last year, who invited him over to his for a barbecue. Fionn was nervous, asked me what to do, and we talked about options,…this time he was afraid it was a girls and boys event, and really is nervous of what to expect there. But that time he said to P, “would it be okay if i come the next time? “and the answer was YES – which gives him time to hear what happened and went on from others.

So there is no secret. Fionn is a great child. a happy, confident child with Asperger’s. 

There is no method, no book on “what do i say when…?” for Asperger’s Parents. But for us, it has been that we have talked all the bits through with Fionn, When he encounters anew situation he comes and discusses it, and we unravel the panic, until we get to the actual worry itself, and he understands it then. 

And we keep finding new issues, new situations where he is unsure and uncomfortable and he is so relieved when he resolves it, and the dread of another unknown is gone.

what if…ONE new situation is one situation learned – whatever the outcome…if it is discussed and analyses…but the What ifs will change as he gets older. For the moment they still involve us doing the debrief and untangling…but maybe someday…he will NOT need us?

Lets see how it goes. Another fear conquered…?20140508_0016_UTV_Spirit_NI

Helen

being interviewed by UTV.

The day at UTV  :D

THIS IS AN EMBARRASSING BLOG.

in May, i blogged about the Spirit of Northern Ireland awards…..and one day I made the long trek up to Belfast  to UTV studio to meet before the spirit of Northern Ireland awards!

I know i have said i was nervous and surprised to be there but when the time came i enjoyed it – even if i was a bit nervous.
We were greeted at the door by a nice lady called Sarah and I was given my name tag and my pass, and we were directed down to the studio 2. They made us welcome and let us mingle a bit. It was really cool, with loads of interesting and unique people. I talked to a few of them and they seemed friendly. I didn’t ask anyone why they were up for the awards cos I might seem nosey. i am sure i will find out on the night. I was looking at the TV screen which was showing highlights of last years show. you could tell if people were up for awards if they had a badge. A lot of the other young people seemed very wee.

We were then given a tour of the main studio and then we were given a t shirt with a symbol of the awards and we went on the tour of studio 1, where they do the utv news! That was snug compared to what i had imagined. Its a room with lots of cameras and a few chairs and really bright lights above Paul Clark’s head!

We all had to be interviewed by a lady before we left. That was the bit i was dreading and it didn’t go as bad as I thought. But i am sorry i can’t remember her name. I hope i said sensible answers rather than some of the gibberish i can sometimes come out with :)

  • I amn’t good at interviews cos i can’t prepare for what they might ask me.
  • I also don’t know until the time how i am gonna manage about eye contact.
  • my answers to questions are really really short usually. 
  • I can’t do small talk…but i really try when it’s something like this to keep talking.
  • sometimes i lose concentration if it’s a big long question
  • what if i can’t sit or stand properly
  • will i talk far too fast
  • will my mouth twist
  • sometimes there is a sensatious issue about the person doing the interview – 
        • like i don’t like their teeth,
        • they smell of smoke ,
          • they sound a bit posh and scary for me,
          • i don’t like really high pitched voices
  • there are so many WHAT IFs.
  • even what if i don’t understand the question.

BUT the lady doing the questions spoke very softly

and the questions were ones i was able to answer.

Mum and Dad were standing close by – but not able to help – so it was all me.

A UTV lady sent mum a copy of the interview on DVD. (it was SUPER embarrassing…but MUM decided to post it anyhow!)

but in fairness it does explain why i do my blogging…

so i HOPE YOU enjoy it more than i do watching it :)

by Fionn

 

 

 

 

 

i DO NOT like….

i DO NOT LIKE :

  • getting my nails cut!
  • photo (26)toe nails are EVEN WORSE – sometimes at night i kinda rip pieces off them so they don’t have to be done!
  • it’s the TENSION of getting it done.
  • and the noise of it.
  • i HATE it
  • i also NEVER EVER brush my hair.
  • it HURTS.
  • the only time it gets combed is at the hairdressers and i still grind my teeth while that bit happens.
  • i also hate washing behind my ears and my neck.
  • it makes me squirm a bit.
  • but i DO do it cos i have good hygiene! I am freaky about hygiene.
  • i guess they are all kinda SENSATIOUS
  • is this an APSERGER’s thing or a ME thing?

by the way… do loads of us have curved “pinkie fingers”….mine are pretty sore to put together with my other fingers..LOOK photo (27) bye for now

Fionn

Am I a fussy eater?? By Fionn

wibbbly wobbly timey wimey… stuff

http://autism.lovetoknow.com/Time_Perception_in_Autism_Spectrum_Disorder

mum found this today on the internet.

it is about people with aspergers and how they find it hard to judge a LENGTH of time.

by the way do you recognise the title?

it is from a Doctor Who episode. (it was the episode called “Blink” with David Tennant…yes it used to be my “thing”)

i always find it hard to USE time.

mum says when i was younger and we had to do a visual timetable with pictures of what do to in summer holidays, I was RUBBISH at it…i would think i was DONE the whole day and it might have only taken me an hour to get through the entire day plan.

apparently when i was in  nursery class i kept repeating the question “what time is it” – and i really didn’t know the time . I just wanted to know could i leave yet and was mum coming.

If i am somewhere on a trip , eg. the ZOO…i HATE it. Cos once i have seen a creature then i get bored with it and am ready for the next one. My brother loves animals but i am like “can we go we have seen this one “…so I could do the whole trip in an hour!

i do EVERYTHING kinda fast and not carefully -

  • like getting dressed,
  • packing my bag,
  • tidying my room,
  • writing (it has always been a squiggly mess – sometimes i can’t even read it myself) -
  • homework in general!
  • actually I wish i could have a SCRIBE!

i hate days in school towards the end of a year when you do’t DO anything. they seem so long. In Primary School it was worse to manage because we had to sit in the one class and it was very boring cos there was like nothing to do. At least in secondary school you have to move from classroom to classroom so it is a BIT of activity.

i think my brain functions better with a timetable and a plan.

The summer holidays were a REAL torture for me. For many years i couldn’t adjust to all the free time when you had to make up your own choice of what to do. This year I am finding it better – cos i am getting a bit used to it, i have learned to lie in, i can do sport, and am managing ok so far!

In exams i have REAL problems with time.

  • In an exam which lasts an hour i might be finished in 10 minutes.
  • Because i have processing difficulties i get extra time given to me in exams, but i am rubbish at using it.
  • I finish sooo fast. In some subjects i am better than others – like in English cos i am good at writing i do use more of the time.
  • In subjects like Irish and French there are multiple choice questions which i find easier than big long questions – but they are quite easy so i finish quicker.
  • Even subjects like music that I am good at, because i whizz so fast i make stupid mistakes like not reading the question very carefully – like this year when i did a whole bass clef question in the treble clef!
  • my classroom assistant is allowed to ask me am i ok – like if she knows it’s a subject i get stressed about like maths or science BUT she is not allowed to say the answers OR slow down.
  • when there is big long questions i freak out a bit – and i rush through them. I write in kinda points not sentences – and maybe if i took it slower i would get a few more marks.
  • mum makes me UNDERLINE the WORDS in the question when we are revising together…but i need to start to do that in the tests i do on my own.
  • My meeting this year about how am doing was really about me and time. Cos everything we are doing ok. So we talked about counting the amount of questions and the amount of time on the paper so you figure out the amount of time for each question. We talked about taking breaks after each few questions to slow me down.
  • mum says i need to start wearing a watch to start to realise how long ten minute is, or 5 minutes is, and get used to USING time. BUT i hate the feeling of watch (sensatiousness) and i can’t wear one for more than a few days and then i put it somewhere and forget about it.

So i REALLY understand that ASD and time is a problem.

or at least it is for ME!timey

 

 

 

 

 

 

Friends

Friends.

Sometimes making new friends can be a tough task for me and most aspies.

When I went to school first, I was what you might call a loner. My class didn’t know about me, they thought I was just weird, so that didn’t make it any easier. So mummy and daddy got me tested for autism, which suddenly made it easier for everyone to understand. So I repeated nursery with a new class.

That made it really good because I knew somebody in the class really well. She was a family friend.  Jenny introduced me to her friends, so for the first year or two I just stayed with Jenny, Zoë and the girls.

I used to think boys looked scary and big because they played quite aggressively, so in P2 mom and the teacher got me first to play with one boy- Mattie, and it wasn’t easy but I got used to it. Soon I had a good group of friends.

When I was in P3 I wanted all the class to know why I was different, so I brought in the book “all cats have Asperger’s” and teacher read it to the class.

In P5 my ADHD was a bit more noticeable – I was never badly behaved but I started to get unorganised and a bit sloppy at looking after my stuff. And I knew the people beside me couldn’t concentrate cos I would be fidgeting,. In small groups I took out my friends and Mr Murphy (the Principal) and me told the group more about my autism.

At that stage they were fine with it, cos they were my close friends.

When my parents wanted me to start Gaelic we decided to explain to some of the players from other classes and the coach about my autism. Now they are fine with it too. Now I can easily and comfortably go with teams out on trips to play games.

in P7 i went to Manchester with my year group and was away from home for 4 days!  I was proud of myself. I stayed in a room with my closest two friends.fh Cookstown-20120516-00450

In my new school I recognised a few boys who I played matches against, and mum had arranged for me to be in a class with 2 of my primary school friends until I felt safe.

Really early in the year my form teacher Mrs Nethercott played this game where we had to say something about ourselves that made us different. I said I had Asperger’s – one boy said he had a cousin who was autistic and non-verbal and nobody else really minded.

Now I am half a year in the new school. I have a few close friends, a few friends and few boys who I prefer to avoid.

Sometimes I find being in groups tricky. Cos I find it hard to just create a conversation with more than one person. When I notice that happening I walk away.

Overall mum says you should just have a group of close friends who will look out for you. But you need a few that you just have craic with. And its okay to just manage some more tricky other people. But  sometimes I still talk to mum about the friends groups and all, and I want to keep trying mixing cos when I am 18 I will have a bunch of deadly mates to go to discos with.

I amn’t ready yet to do the girlfriend relationship thing, but that will come soon. And I guess we will have a lot of chatting to do before that. But anyway for now….i have friends …and that’s the important bit!

Fionn

teaching then allowing independence is scary as a parent.

Our aim for Fionn from the day of diagnosis was that he could integrate as fully as he could manage…that in the longer term gave him as  much independence in a mainstream world as he could manage.

That is NOT easy!

Fionn like other Asperger’s children was so “easy” in his own company, that we had to be challenging. …not CRUEL…but to try not to do the instinctive keep him safe and comfortable, but instead challenge him, and as soon as he can, make he part of the decisions on what he wants as an outcome…so therefore what do we need to do.

This isn’t the RIGHT way for all. it isn’t the ONLY way for all…it was what we chose for Fionn, and so far have supported him towards. and please understand we were just being PARENTS….trying to make choices for the vulnerable Fionn – aged 4 – who we loved and didn’t want to change, just to allow life in the longer term to be easier for him. We were never CRUEL….never!

It was tough in the early days. Many me;t downs. Many sticking by our choices. Many times when things didn’t work out easily. As i have mentioned before, the biggest issue for us, was helping Fionn to learn to mix. That’s a phrase that sometimes to a non-asperger’s parent probably sounds stupid. but it isn’t to those of us who know autism. :

  • Friendship,
  • emotions,
  • reading emotions,
  • empathy and
  • understanding others…

NONE of these are “programmed” automatically. Fionn was our 3rd child. But we had to constantly explain “why” to do this, not do that, wait to speak, look at someones face and try to understand even BASIC facial expressions.

  •  consequence…

Fionn had no interest in what happened if he did toss a tower of bricks…that maybe another child had built…if it was funny to himself…the end. That didn’t happen in the “wiring” either. So there were YEARS in there. YEARS when i know my other children, and my family probably thought we had lost the plot – you don’t need to make a big deal of everything…but YOU DO!. you have to teach the simple people skills that others have and develop automatically, before your child can successfully mix.

  • immaturity..

Because we hadn’t noticed anything beyond a quirky wee son, while he was within the confines of the comfortable inner circle of family and friends, we weren’t really dealing with Fionn with enough attention to these things, so we had a bit of catch-up to do, during his early years of school. That was the challenge VISIBLE…to see your son in a room UNABLE to play with anyone, left out of group work…in a wee world of his own is HEARTBREAKING!. i have cried. Other children can be desperately cruel by not understanding and through NO malice..they do what is natural…they too are only babies. But his natural “default” was isolation – and relief when he was collected. So many times i cried as i watched him left alone – and he was happy enough to be there.  You know there were times that i wished , and please forgive me for saying this, but i thought it would be easier if Fionn’s disability – and at that stage although i will be challenged by him on the term, Fionn’s social inability WAS a disability , but i wished it were visible! If a child has a physical mark, difference, other children learn to make allowances and to treat kindly. But Fionn looked ok – (not when you looked for the twisted mouth, or the scared face) but he looked normal. So for Fionn there was no awareness of the need to mix – yet – how did that serve him when he is 15? 40?

So 3 full school years later he had learned to mix. Not automatically enjoy it, but at least by that stage he was old enough to rationalise with….when you are a teenager, what do you want to do? well how can you go to town with your friends if you don’t make yourself play with others? so out you go…it wasn’t easy. But we had school working on it during the day, and we had very good neighbours at home, who loved the quirky funny wee Fionn..genuinely!

Over the next few years – remainder of Primary school, it was not at any level, Fionn knows socially now- he is fine….:

  • EVERY new situation,
  • every new challenge
  • needs be learned,
  • addressed -
  • chatted about in advanced-
  • unravelled in hindsight.

Fionn played tennis – at first for balance, and eye contact! But gradually as it was a non contact sport he managed to go to summer holiday camp – a few hours a day…he had a few older friends who kept a distant eye – and coach understood him fully. So felt safe.

BUT we kept at it. We wanted him to try to play team sports..mainly with boys from his class at first  .THAT was a HUGE ask. He didn’t cope well at first, so was a case of explanation….BUT he decided that it would help him socially if people understood his condition:

  • why he got upset
  • why he misinterpreted people shouting at him
  • that he didn’t like contact…

so once a few boys “GOT HIM” he felt he had a safety net on the pitch. That made him more able to manage with less fear. Obviously not biting his kit, his gloves, his training vest…that was another matter. But as his ball skill improved, and he realised someone roaring at him during a match is purely to do with THAT SHOT…not that you are hated, his enjoyment was obvious.

He shortly asked if he could start with a town team. We were petrified. His classmates understood him, but its a whole different arena when there are total strangers, but we agreed to try. His dad initially stayed at training and saw that he managed and was accepted reasonably well! We have had VERY few incidents….now his dad does not go…other than maybe to watch a match or pick him up.

  • lifeskills

is a subject area in special needs schools, and to a lesser extent in a secondary rather than a grammar school. But lifeskills to some extent are integral to young people. Fionn would not be automatically aware of the need for

  • regular showers
  • money awareness
  • cooking
  • tidiness
  • to be independent

so rather than wait for a brief module to teach him what he needed, we coped on that Fionn had to as an ongoing practice, learn to manage independence. He knows now to shower regularly and does…he has always had awareness of bad breath in others, so teeth cleaning was not a problem! He is “programmed” as messy and scattered in terms of ASD – there are the tidy, every-thing-in-its-place folks, and the who cares folks…that’s HIS group!. we do choose our battles, but that one will always be a work in progress.

Cooking started with a HUGE leap of faith. His hypermobile joints meant making a cup of tea, as in lifting and pouring boiled water, terrified me. But we started about aged 10…boiling first a cupful of water in a kettle…and now have got to the stage that my heart is no longer in my mouth, and he can make tea foe himself, us or visitors. He can also cook an Oven dinner – a pizza,fish fingers, chips, nuggets…a basic can manage diet. Again with oven gloves and HUGE amounts of supervision initially, now quite capably!.

We have this last year or so made a deliberate choice to leave the 2 boys Fionn , and his very close brother Caoilte (18 months younger- yet older in some ways) unsupervised. HOLD THE SOCIAL WORKERS…unsupervised in the house – but under the watchful eye of our next door neighbour Teresa – who drives them home, drops them to our door, then calls over periodically to see how they are, and they feel she is intruding LOL..but who they can call if needed.  We would be in phone contact for the hour or so, so they can let themselves in, have a snack, put the dogs out to the loo, and start homework. They LOVE it – and Fionn calls just that specific item “doing independence”. :) It takes nerve, but it has worked out. little by little. Also this summer, when at tennis camp, the two boys walked home – each day – via the shop!

  • he orders his own meal – with specific details and questions in a restaurant.
  • text and find out information
  • answer door appropriately
  • talk to anyone in our company
  • represent the school on teams
  • can go into a shop when i drop him at door, and do a few messages
  • walk with friend to nearest shop
  • go to sleepovers in a FEW carefully chosen houses

Today, he was picked for an under 15 town soccer match – about 50 miles away…on a bus…with a team of boys 2 yrs older. …he has just turned 13. He did fine….I WAS petrified about the what ifs…what if a bigger boy on the other team…..now who is more anxious?

we will keep “doing independence”….thank GOD for mobile phones to make ME feel safe!

he is fantastic….

i am anxious…

role-reversal!

Helen
DSC_0212