Monthly Archives: June 2013

Too quick to judge

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I was expecting it but I wasn’t prepared for it.
We had a lovely visit at the PRU yesterday , but by the time we left it was all a bit much for O.
We had literally just left the building when the the mother of all meltdowns kicked off.
I’m not talking about a tantrum , this was so much more. A real full blown meltdown.
It started with a raised voice which quickly escalated into shouting
“Leave me alone , leave me alone ”
Accompanied by O kicking the bus shelter and the nearby rubbish bin. By now there was screaming , crying , full blown rage and lots of thrashing around.
I was only just barely keeping it together when the lady sitting at the bus stop began tutting and shaking her head. ” oh dear I wonder who will win this little tantrum”
This made O worse and it quite frankly made me feel like s**t.
I was struggling and already embarrassed and upset , I did not need someone wrongly assuming my child was being naughty and throwing a tantrum.
I was trying to keep in mind that this was not bad behaviour this was O reacting to a morning that was all too much for him.
But it’s hard to keep a level head when you are feeling judged. We were at a bus stop on a long stretch of main road and O was thrashing around , running dangerously close to the road , when the bus came I had to get him on. I had no choice because I needed to get him away from the road. I had to hold him on the bus so he wouldn’t be able to kick or lash out , it wasn’t the best thing to do as he screamed for me not to touch him.
He wasn’t going to hurt anyone and I know it didn’t make for a pleasant bus ride but we were only on for a few stops and I think it was quite obvious that this was more than a tantrum. But the few passengers on the bus all gave me the evil eye and the head shake. I could almost hear them thinking what a horrible kid he was and what a terrible job I was doing.
Maybe I shouldn’t have got on the bus yet but I just needed him away from the road.
Situations like this and in fact any kind of tantrum are uncomfortable and embarrassing , they are heartbreaking because your child is so distressed what you don’t need is judgemental people who don’t understand the situation to make you feel useless and humiliated with remarks , head shaking and the evil eye.
When you see something like this happening think before you make wise remarks , probably just don’t say anything. Hold back with the head shaking its only a small gesture but it can have a powerful effect in making someone feel extremely inadequate and, Instead of glaring look away or better still offer the person dealing with it a look – not of pity – but a look that says I can see what you’re dealing with , don’t feel bad !
What we really need is a world where people try harder to understand each other but for now let’s settle for not judging what we don’t know or understand !

Pupil referral unit.

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You know sometimes you walk into a new place and you just know , you can feel how lovely a place is.
That’s how I felt when I took O to the PRU today for his admission meeting.
We arrived at 9:00 am , half an hour early , and it was very busy as children were being dropped off but we were given a warm welcome and shown to the comfy chairs , while we waited for our meeting I was watching the children and staff , everybody looked very happy to be there. The reception area was full of people saying good morning and kids being dropped off very happily. Whilst we sat there 2 children came over to show us toys and say hello and another child invited O to play a game with him , obviously O declined.
The main corridor – was full of displays , photographs , and tables with dinosaurs , puzzles and lots of interesting things on.
Although we were 30 minutes early we only waited for ten minutes before O’s lovely smiley new PRU teacher came and took us into a little meeting room.
O didn’t want to sit but she gave him a bean bag , hard chair and comfy chair just in case. She started by telling O that she would be very nervous and would have a funny feeling in her tummy if she was visiting there for the first time which put him at ease a little. Because he was very nervous. She told us all about the PRU and asked lots of questions about O and what O likes to do.
He was very fidgety and was doing lots of facial tics and shouting out words , mostly mamma Mia today ! But the whole time she reassured him that that was ok. And she gave him time to answer things when he found it hard.
The teacher explained that there are four classrooms with only 6 children each. Each classroom has a teacher and a TA. O will be going twice a week to start with ( hopefully that will increase ) he will have one afternoon and one morning each week. The staff from the PRU take the children to and fro by car , which O is quite happy about as he loves cars , he’s already wondering what kind of car it will be.
To finish up we had a tour of the building. The whole place is bright , colourful , with computers in all the classrooms and lots of fun stuff everywhere. We walked in on a class and when the teacher told them we were having a look round one pupil suggested that everyone should introduce themselves to O. They all did very politely. We had a look outside at the playground it’s brand new with lovely climbing frames ,planting areas , astro turf and a whole shed full of bikes and scooters.
O was due to start in September but as things are not going well at school they want him to have a few sessions before the summer holiday so he will either start on Friday this week or otherwise definitely Wednesday next week.
I think O is really going to like it there and I believe it will do him ALOT of good.

What’s the point ?

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Somebody said to me today ” what’s the point of making a website about autism if you haven’t even got a formal diagnosis for O yet ?”
Actually it was my eldest. Supportive huh ?
The fact is I haven’t got a formal diagnosis for O yet but CAMHS said they believe his IS on the autistic spectrum. The educational psychologist that observed him also said he displays autistic traits. And the on the child communication forms that the school filled in just now the school scored O highly ( the actual highest score ) on almost every question.
So yes I don’t have a formal diagnosis , but all evidence suggests I will.
However if CAMHS were to say to me ” actually it seems that O isn’t on the spectrum “would I just stop caring about something that I’ve spent alot of time reading and learning about and that I’ve become very interested in ? No I wouldn’t. I would still believe that there needs to be more understanding and acceptance of autism. And I would still believe that there needs to be more support. All support is good ,I think that anything that raises awareness of any issue is a good thing, and really there can’t be too much understanding about Autism can there ?
So , I’m going to carry on making my website , aside from anything else I’m enjoying it and I’m a bit proud of it.
If it were to turn out that O isn’t on the spectrum I will be happy for O but I’ll still carry on.
The point is that we all need to help each other in any way we can however big or small

Scoring high ( o – 8 y/o )

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CAMHS gave me some questionnaires for myself and the school to fill in .. I told school that I would return their copy to CAMHS ( because it only takes me 5 minutes to pop there) but mostly because I wanted to read it. It was in a sealed envelop but obviously I opened it.
I started reading it as I walked home from school but I soon had to just stop walking and take in what I was seeing.
The questionnaires are child communication checklists , lots and lots of questions for example
Does your child speak in a strange tone of voice , maybe sounding as though he’s acting ?

Does the child talk pedantically about subjects that no one else is interested in

Does the child have an exceptionally good memory

Does the child often have a blank face when you would expect happiness , sadness etc
And lost more in depth questions along those lines.
You answer by scoring the child for how often that behaviour is seen , from 0-3 or 0-6 with 3 or 6 being the ” worst scores ” ( they happen frequently , every day )
O scored the 3 or 6 on almost EVERY question.
I was starting to feel a little crushed.
Then I turned the page , hang on a minute I thought , he’s got the lowest scores on this page. Whoop whoop. It’s not all bad.
Then I read the top of the page. Yes, the scoring system was different on the page. Still ALL the worst scores.
totally crushed
It’s just awful reading these things about your child. Even if you already most of it seeing it written down is awful

I’ve filled mine in. The scores aren’t quite so awful ( not far off) but that’s because he’s happier with me and at home.

I’m heartbroken because life is obviously … Well frankly a bit sh*t for my boy right now.
But I am going to deliver the forms on Monday morning so hopefully CAMHS will give us another appointment quickly ?
Surely with O scoring as he did they really do need to do something now

Butterfly minds.

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I floated this idea around a couple of weeks ago but I soon realised I didn’t have a clue how to do it. It’s harder than I thought but …
My idea was that I want to make a website that is useful / helpful to parents of ASD kids. What I want to have on there are links to autism organisations , links to autism blogs , any useful info I can find , lists of things such as books which I found useful ( including non fiction) and most importantly I want it to be full of people’s stories and experiences. Their feelings , hopes , fears etc so that there is a place where we can see that we are not alone in going through it.
I would be so grateful to anyone who shares their experiences. I’ll be happy to post anything that is written for the site. My knowledge and experience of autism is still very small !
My email is gretheplus7@yahoo.co.uk.
The support on twitter today has been amazing , but this is harder than I expected ( my ideas always are) so I would gladly appreciate any support.
I’m only just learning about autism but I really hope that i can eventually make a site that can do some good.
The website is butterflyminds.mpresence.net please take a look.
Constructive advice and criticism are very welcome.
THANKYOU.

One step forward …

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One step forward
Two steps back
Hold your breath
and count to ten
Slowly going forward
It all goes wrong again
Tired
No relief
No peace of mind
Looking for answers
I can never find
Which way to turn
Where do I go
However hard I try
I never seem to know
Maybe tomorrow
I’ll get it right
It plays on my mind
Through out the night
We sleep
We wake up
we do it again
One step forward
Two steps back
Hold your breath
And count to ten