These are BOTH photos of a boy with Asperger’s.

They don’t represent him before and after some type of cure…

They represent Fionn – totally lost, confused and in NEED of urgent help, and

Fionn, who understands his condition well- who can express it clearly – BUT who has and will have differences which will be there when he faces a NEW situation, a difficult challenge, but hopefully rather than always have the typical Asperger’s reaction, he can draw on the skills formed and learned to help him manage it.

If not, we learn another new thing about the world, from th Asperger’s prospective.
Fermanagh-20130312-00165 Fermanagh-20130308-00152

 

 

 

 

 

 

Even with what i now see as thi OBVIOUSLY Autistic child, we did not have an easy path to diagnosis, or an automatic implementation of great strategies and services.

  • we had a glow in the dark example of a child who simply could not understand the world he was in and could not cope in it.
  • we had a school educational psychiatrist called out at that stage. She was an eldely lady – the old school of “don’t label”  child. When I look back at her diagnoses which came in with “unlikely to have autism” – i am shocked at the very obvious markers which she simply excused as immaturity, personality, quiet child…anything but autism!
  • we DID have the support of a School Principal who allowed us REFUSE to let Fionn move on. To us he could not, and would not move on in a classfull of people who scorned his innocence.
  • On the summer between those 2 years , we saw- maybe we were only now tuned in properly – evidence of his lack of undesrtanding of social cue…behaviours were strange, and consequences bewildered him.
  • we spoke for advice to a pyschologist friend who pointed us towards a colleague, who with her daughter am OT, they spent a day doing a private assessment. We had NO plan to use this for anything other than our nderstanding of Fionn.
  • When she came back into the room the diagnosis – was SO DEFINITE. She said you need to get your education system to act on this. your child presents so differently with you and wothout…can not sequence, process complex tasks, short attention span…a huge list.
  • Was summer holidays, and rather than contact the school, i went for the ELB Special needs head. I told her i was NOT expecting her to accept the diagnosis, but that i was fully expecting it to be a matter of time before they(assessors) were called for from school, and i merely wanted to get my voice on record as saying sooner rather than later.
  • they came out…to cut a long story short we had a teacher that year who was not used to young classes, and at te time thought a lot of the class were similar…he didt seem to be a problem (sadly by the end of the year she realised he didn’t have to BE a problem to HAVE a problem- and she apologised profusely!)
  • UNFORTUNATELY her assessment being one of the ,main inputs, described a child NOT like mine, and affected not the label! luckily as he got a clearly aspergers report from speech and language and and very definite one from our Paediatrician, the real difference it caused was he was offered a ludicrously small amount of assiatance .
  • We entered a tribunal process, but thankfully by the time we had a Dispute and resolution meeting, we had the teachers end of year assessment, which really was at a different level of recognition.
  • this process awarded us a full time asistant – but one not finely tuned enough to notice the very subtle presentation tht was Fionn, and so in effect, it was over 3 years before we EVENTUALLY had in place a team- with another assistant, with support from Principal, with our involvement being variable as needed
  • luckily we did , or i did realise that once needs are identified, it does not require a statement to have the implementation of an IEP – an individual eduactional plan of provision, so while we battled, we also had school work on Fionn’s ability to socialise….

This seems like a pointless venting …but i WANT parents to see that the same problems they are encountering were ones which we had to come through!

You really are NOT in the system with any illusion that you are builing a friends network, ad while your shool may theoretically be very supportive, they WILL get sick of seeing you on a year when the teacher needs a constant reminder about the child…or when there are specific problems…BUT…..please do NOT apolgize to anyone – your responsibility is raising your child to achieve their potential – NOT JUST ACADEMIC- and that is your mission! 

I spent a few hours recently, chatting a mum of a little boy who has a diagnosis of High functioning Autism…and is feeling such a nuisance when being told by the school “there are far worse!” – what the hell is the relevance of that?

If your child is quiet, well behaved, confused, but NOT disruptive he will probably NOT get the attention he deserves unless you push through this “there are worse” barrier. Other children and classroom management challenges, unfortunatel is the teachers responsibilty…your CHILD is yours!….

i know of several  academically very capable autistic children whose parents have been through precisely this. But a few points you need to acknowledge and perhaps discuss with your school:

  • what is duty of care?
  • is it purely academic?
  • how is your son’s social sense?
  • is he happy?
  • are his frienships age appropriate?
  • if YOU know he is not…speak UP!
  • mental health problems are common in ASD children due to lack of understanding and difficulty in relationships.
  • ask your paediatrician to revisit the case – from an emotional perspective…
  • ask your school to put IN WRITING that they feel your child’s needs – all needs, academic, social, emotional needs are being met…if they don’t then ask WHY???

Do NOT be put off by disinterest 

by the guilt-trip that your child can manage…there are worse..

your child has rights..

Proactive emotional and social support, CAN prevent REACTIVE mental health support later on!

PLEASE realise that we have a good relationship  with school

– a good working relationship

– a situation where our so is happy at school

– a communication arrangement where we can discuss any problems..

-a child who is MANAGING…

NOT a child who can be ignored or assumed to be coping.

BRASS NECKED parents…put your child first…if individuals get peed off …that is due to their lack of professionalism in ACKNOWLEDGING your child’s needs. 

hx

 

Advertisements