Last week i wrote the blog in this link:
The plan was NOT to appear to be an expert on AUTISM or ASPERGER’S, but i am a mum of a very capable, happy, confident and well integrated boy who has aspergers.
Fionn has had a lot of media exposure because of how positive he is, and the way he doesn’t fee he “suffers” from and “autistic Spectrum Disorder” – more that he has aspergers and that he has a difference.- rather than a disorder.
I do NOT plan to tell you that AUTISM is this way for every child, simply this is how it is for Fionn, and i want to share bits of insight we gained along the way to where we now are.
The last Blog (above) really talked about Fionn’s diagnosis, and the fact that we realised that this child was ours, our responsibility, and that we had to be the lead in any team that were involved. We had to figure out the way of best negotiating Fionn’s way through school, the way of feeding into a system of qualified experts, by now having realised that we were, by learning from time with Fionn, experts by experience.
That is basically the starting point.
At the end of his first year at school, when he was diagnosed as having difficulty, but NOT yet formally Statemented (as in an educational Statement of special needs), we and the school could see how isolated, immature, and afraid Fionn was in the class group he had started with. So thankfully we had an extremely supportive school, and the Principal agreed that it may be better for him to repeat the year – as he really had NOT managed to achieve many of the very basic outcomes. We felt immediately that the following year would be different, as in that year group there would be a lifetime family friend – a child who Fionn didn’t struggle with, who, as her parents were aware of him and his problems. We figured that with her help, he may manage to make friends – almost indirectly….but it was definitely worth trying.
So he began again – and luckily my niece had moved into the area, so he knew 2 people in his class! And am deliberately saying knew, as Fionn’s preference was to play alone. But if either of the girls decided to join him, he didn’t shy away from them. Gradually if they brought a new friend over, that too became acceptable. Fionn was still, though, inclined (as he sometimes when stressed still does) to make conversation about HIS area of specialism – at that time Star-Wars – and would randomly interrupt the conversation with his Star Wars Comment.
So for this year, as his needs were not formally labelled, they were still identified in the Classroom, and he had an IEP – an individual Education Plan. We were invited to input suggestions for this – for what areas he needed help with. His IEP was reviewed termly . But for this year we had two main objectives:
- That Fionn would be able to mix with a small number of other children
- That he would learn turn-taking in conversation
He managed slowly – but did make improvements. Mainly in parallel play, more than actually joining fully in…but that was GREAT!
By the end of that year Fionn was still not formally statemented. I genuinely had no expectation of how LONG the process was from beginning to end!
The next school year was very similar, but Fionn still stood out as different and less able to act and relate appropriately than other children. He had moved on with the same group who he could “manage” – to an extent, but that was his network. His IEP kept the main two targets – except minor add -ons with relation to sitting quietly when appropriate, and fine motor skills such as pencil grip, and scissor use.
During that year his educational psychology appointments- with him, his teacher and ourselves took place. They happened before Christmas – which may seem irrelevant but in fact was important. His teacher saw a class full of 5 yr olds, and didn’t see a lot “wrong” with Fionn relative to our more detailed view. She did by the end of the year. We saw Speech Therapy and Pediatrician – both of whom were 100% sure that Fionn had asperger’s syndrome.
I remember the speech therapy assessment most clearly, as it was a book of pictures and he was asked what was wrong in each picture….and i was torn between shocked and really amused at some of his observations!
- picture of girl on a horse with no helmet…his answer “that horse might smell!”
- picture of a boy riding bike with one hand….answer…that isn’t a boy!”
- safety pictures got scary responses…had NO awareness of danger!
but EVENTUALLY on collating all the forms he had Asperger’s Syndrome…it was almost the end of the school year. Once again he had made some progress.
- Still liked to fill hands full of random objects,
- would speak out during class “Mrs X – your bottom is near my face”,
- HATED field-trips thought they were pointless,
- CRIED at being told Sport’s Day was coming,
- and even by the end of the year, his coat was the one guaranteed to be on the floor not on the peg
- most of the time this class thought Fionn was funny,
- but was a long way off being comfortable for him
By this stage we had noticed quite a few trends in Fionn. So in September, when he was a few weeks in the class, i made an appointment to chat the teacher. As this was his first year with a Classroom Assistant – so i wanted to be sure that the teacher was as well aware of Fionn that she would be able to lead the assistant in how to manage him.
The teacher was a very gentle lady and had grasped a good insight into Fionn. She had taught other asperger’s children before, but i had now realised that the reason this is a spectrum is that NO 2 cases present the same. I now knew 2 other children with aspergers, and to be honest, Fionn was almost as different from them, as he was from us. So i was CONFIDENT enough to ask her, do you need generic “What is Asperger’s” or even “Asperger’s in the Classroom” information , or would it be better to have a page on how to read Fionn?
I was so delighted as this not only was my opportunity to describe the wee twisted faces, and twitches,…but i knew she was genuinely keen to HELP him – not just tolerate an asperger’s child in the room. What we gave her was VERY simple:
- when Fionn is anxious a corner of his mouth might twist
- when he is afraid he will physically move back
- he finds it impossible to generalise and form rules – if today a tadpole grows up to be a frog, and you ask him tomorrow, the answer will be “i dunno!” with a beautiful excited face
- when he does something “wrong” – he HAS to have it explained to him – and the alternatives, as he will probably not have seen them!
- if he repeats the question “what time is it?” he is worried about something – that is his way of wondering is it time to go home.
- Don’t be literal- he is very confused by “find a space and sit down”
- he may object strongly to smells that are NOT offensive but that HE finds offensive…
- you will have to reinforce the same instructions all the time – as we did at home. Hang up your coat…he will have forgotten that by the time he gets to the press
- he will NEVER alert someone that he is upset
- will never throw a tantrum so you need to be aware of the lip biting, mouth twisting etc
- his organisation is really poor.
- books will be in balls in the bag,
- he may bring random objects in his hand – it is some form of comfort, not stealing.
- he finds moulding and squeezing blutak can help him stay steady and calm for a while – useful for assemblies.
- he WANTS to fit in – so if he is asked “are you ok?” do not accept his “YES” answer if you sense he isn’t…he just doesn’t want attention
Not rocket science but useful and specific to him. He still had as his man IEP
- to be able to mix with a variety of other children
as the main focus. He had managed a reasonable number of friends of his 2 real friends, but that was all girls – and to be very honest, he was so gentle, nervous, vulnerable he was happier like this for now!
Academically he was ok. BUT. if we were to do do reading homework we had to replicate the classroom situation. So we had our set of flashcards, our visual timetable, our bricks for counting….all as the school had – the more words he covered in school, the more flashcards i wrote. It took a longer time, but we got there…..by silly sentences built with flashcards
– the cat is on the man
– i eat the house
– the man is in the schoolbag
it worked, The HUMOUR in Fionn made this work, so we continued with him.
Fionn and his classroom Assistant got on fine – but she wasn’t really finely tuned in to him, so when sub-teacher would take over we had days when Fionn would come home and have total meltdown, from something that upset him early in the day…so we needed to look into that.
THIS was the year when we saw change!
Once again, let me point out we had such a supportive school. We had discussed the relationship with his assistant and Fionn and we agreed to try another lady. She became and will always be referred to as “his other mother”.
We started the year as before – this time we had some academic and learning information to pass over, so in September we met with the teacher, and passed on our page about Fionn, now loosely divided into 3 headings: Social, Emotional, Academic – but just an update on last years basic how to read Fionn’s information.
This year we updated the IEP to encourage Fionn to “manage” to mix with boys! Not as easy as it sounds – but Fionn’s early perception of boys was they were aggressive and noisy and rough. So we agreed to increase the frequency of the IEP to mid-termly – and the targets to be more specific.
- Fionn and Lorna alone went out onto corridor to talk and form trust – she always had a job which kept his hands busy and thus he was more relaxed and able to talk.
- Fionn Lorna and a girl and boy did the same
- Fionn Lorna and a boy…
- and eventually we had Fionn – with encouragement able to pass a ball in the hall to a few boys!
That probably seems like nothing. but THAT WAS HUGE!
Fionn was able to join in play – technically – and under encouragement – but he was able to! He may choose to run about with the girls, BUT he COULD play with a few boys – obviously carefully selected and monitored by Lorna.
We had also formalised a home-school liaison diary: we relayed back and forth any relevant information. It was brilliant and information was both on work and plat , and specific problems were always mentioned.
Reading had become a higher standard and the kitchen pack of flaschards and silly sentences had expanded to include a few “rude” words like BUM and FART …and now Fionn would write me the sentences. And the divilment in him thrived on it!
The visual timetable was now extended…the length of a kitchen door jam. ..and Fionn was allowed to contribute which things he wanted to do AFTER homework – as obviously his interests would lean towards electronic games- so these were restricted!
The work in that year was more “challenging” to Fionn as we were into more real spellings, and addition tables, and later subtraction tables…
In spellings we divided a LARGE page into columns and I wrote the words out and each day he copied them in a column. Have to say spellings were always good. Which meant he COULD remember…so generalise…so we needed to be able to apply this to maths.
I have one really clear vivid moment where i realised that I HAD to help. I arranged an appointment for myself to talk to an Autistic advisor as i knew that remembering/generalising 2+2=4 is everytime…would be a problem.
She said….and he was about 6 …
” he may just be a child who can NEVER do tables!”.
I then realised that ALL the theoretical experts had JOBS.
What could a child’s options be with no tables? no maths? no shopjob. no science?…at 6? write off his future??
I was the one with the RESPONSIBILITY to see that Fionn was able to reach his potential. NOBODY would write off my child aged 6. It was my mission to help him get as much as he could from education. And we did it. I have to say there are probably lovely modern tables songs, and methods of teaching tables…but what i did try was the old -fashioned and politically incorrect remedial style. NOT as a punishment As a method to see if it worked.
- We would clear the kitchen – nobody there but he and i
- all noise removed
- nothing visually distracting
- upon two stools – me sitting – him kneeling on one knee, with the other held in front of him
- and we’d start….with the blocks.
- we formed the “plus10” rule first.
- so then the “plus9″….
- and we repeated and repeated
- and if he got a mixed up answer, we made a joke of 5 more tables
- and was all done in humour,but was intense…
- and it WORKED!
It was a turning point. We had figured out a way! We were NOT writing off our son.
Everything that we had tried to do he had learned….so far so good….and now there was no doubt.
EXPERT by EXPERIENCE was the real expert. Our confidence grew together…
to be continued….