A Flight or Fight Kind of Day

16 Nov

10556525_10204531065860410_6971819700476975324_na

DS1 (darling son no 1) has had a challenging week, and therefore so have I as I seem to measure my emotional temperature by those of my offspring.

If you met R on a good day you would probably be amazed at his diagnosis of Aspergers -“but he’s so friendly” “what a lovely young man” “you must be so proud” are phrases I hear quite often, and yes, these are all true. He is friendly and polite, and kind, and intelligent and thoughtful and a wonderful sibling to his brother and sisters.

However, he is and always will be autistic. And that is something that can sneak up and overwhelm him in a flash, with no warning, or with so little as to make no difference. What people who meet him (even those that think they know him well) don’t realise is that the reason he is so able to cope most of the time is the hard work that has gone on behind the scenes.

R goes to a very small private school 150 miles away from the family home. He leaves every Sunday afternoon at 4 pm and doesn’t return until Hubby picks him up from the central railway station at 5 pm the following Friday. I resent every second he is away, his siblings miss him, and he misses us. And yet it is the best and frankly only option for his education, as there is nothing suitable in the area. Not one school that has the right sensory environment for his often debilitating sensory issues. It isn’t a perfect fit but then what school is? His other great love and what R himself calls his “saving” is his love for all things Scouting. His Scout leaders are two of the most wonderful people I know, with a proven track record of working with, not against additional needs and a “can do” attitude that puts most SENCOs to shame. Their encouragement and support, along with ours, has enabled R to be chosen to represent his country at the next International World Scout Jamboree in Japan of all places – a challenge for most western youngsters, let alone one who struggles with everything from food to weather. And I have no doubt that R will cope, succeed and enjoy.

So, he’s doing all this and his life is going pretty well for a teenager with autism – he has a social life (of sorts) and he is doing well at school. So what does the council do when they are presented with such a glowing example of their spending? Yup, you guessed it, they try to stop him just as he is reaching his true academic and social potential, that’s what!

Our lovely social worker informed me that there was a massive cut in council spending coming and that even with no new schooling provision having been built or identified, we were being put in the unenviable position of having to justify R’s continued placement at his out of area school. Even though there is nowhere else we still have to do this. What a criminal waste of time and resources in a council already stretched to capacity and beyond.

So, social work and I have found time in our busy schedules to visit all the main secondary schools in the area and meet the staff, talk to them about their additional needs provision and tour the schools. There are five of them, and the nearest had already been excluded as that is where R lasted 4 days before having a breakdown back in 2009 in the first year. We skipped that one!

One was so unsuitable that we didn’t even bother with much of a tour – as soon as the deputy head informed us that they didn’t even have any space for a dedicated support base, let alone any small rooms where a pupil could have some quiet down time, we both agreed to strike it off the list. Two more were discounted for lack of resources or lack of ability to tailor the small classes that R would require for learning without succumbing to overwhelming sensory distress.

Which left one school, about twenty miles away. An OK commute if necessary. The deputy head teacher was welcoming and cheerful, and very positive. She also listened intently as we described the kind of set up that R would require. Unlike all the other schools, her attitude was one of “how can we achieve this for your son?” and I got the feeling that she would fight for the resources to enable his education. A tour of the school was punctuated with her pointing out possible pitfalls that could be an issue, for instance the patterning of the flooring in one area, the stairs being an open design (seriously is there anyone who thinks open stairs are cool?) and the incessant loud electrical humming from the server room.

I liked this woman, she knew her stuff. The social worker and I both agreed that it was still very unlikely R would cope here, both from the sensory and the social points of view, but nevertheless we both felt that he needed to see it if possible, just on the off chance that it might be a good fit, or at least do-able with support and maybe day release to college.

By good luck R’s school had an in-service day that Highland schools didn’t and so this Friday I took him to see the school. He looked absolutely awful; no sleep since the precious Sunday due to extreme anxiety will render even the most handsome sixteen year old to a zombie state, and he sat in the car park telling him that he hated both me and the social worker for arranging this. He was tense, and snappy and seriously uptight, and I felt like the worst parent ever.

Once inside and reeling from the double bell to signify the end of the lunch period we hastened to the deputy head’s room where she was again kind and welcoming, and didn’t take one iota of offence at the fact R had been struck dumb and didn’t rely or even look at her. We took the same tour of the school she had done previously, and R tagged behind, his entire 6’3″ frame poised in fight or flight mode. He wouldn’t go into any of the classrooms but peeked from the door, and he still didn’t speak. We managed about half the tour when he said in strangled tones ‘I’m done.’ He was on the balls of his feet and staring at the door. I handed him the car keys and he fled at top speed. Luckily I knew I could trust him to go straight to the car and wait for me.

I wrapped things up very quickly and the head said she was very impressed at how well R had coped – she could see how desperately unhappy he was from the second they met. I thanked her again for her time, and we left. R managed to spit out the following words and since then will not be drawn on the subject:
‘the lights, the crowds, too many people, low ceilings, claustrophobic, the heat, noises, kill myself’

I think that speaks for itself as to just how bad that was for him.

I have spoken to the social worker and she has had a meeting with the education psychologist. Thankfully, everyone is of the same opinion, namely that R should remain at his current school as a) it suits him so well and b) there is no viable alternative. A formal report recommending this will go to management. If anyone is foolish enough to throw out the recommendation they will speedily find a summons to a tribunal on their desk, but let us hope that common sense prevails.

But it still begs the question as to how the system can be so flawed that the only way to beat it is to place our most vulnerable in the firing line and watch them fall apart in order to prove the services they access are not only preferable but essential? How sick is that? It would be like taking a wheelchair away from someone with no control over their legs and asking them to climb a flight of stairs in order to prove they needed the chair.

My son doesn’t want to be different – he just is. And he needs that support to allow him to accept and embrace his difference, and to rock the world on his terms. And I will be there, helping him to help himself. For as long as it takes.

Advertisements

12 Responses to “A Flight or Fight Kind of Day”

  1. L@Mamaasp November 16, 2014 at 4:29 pm #

    oh honey, hugs from me to you, the cuts are biting hard here and I am terrified for my son in a mainstream school 😦 he is a child education do not want!! seen as a drain on resources 😦

    • ouremuk66 November 16, 2014 at 7:30 pm #

      While we still have the law protecting our children’s rights to an education equivalent to those of their peers we have to take every chance to highlight the pitfalls and insist on the changes they need L, and it won’t be easy, but neither will you be alone. The whole of twitter will be rooting for you x x

  2. mummyshambles November 16, 2014 at 5:18 pm #

    Blimey lovely!
    Why do they do this when things are working?
    Reading about your son…I can almost feel his anxiety but it does sound like the head is sympathetic and that’s a massive plus.
    You shouldn’t have to go through this but I know you have the strength to do so. You’re one of the autism parents I admire the most.
    Big hugs and you know where I am if you need to ‘talk’.
    Love, T xXx

    • ouremuk66 November 16, 2014 at 7:33 pm #

      Bless you lovely, I seriously don’t know why they insist on wasting money and time when they know it won’t work.
      And thank you, that is a massive compliment *blows kissy*

  3. Colin Bloor November 16, 2014 at 6:35 pm #

    This is our Britain today…..
    My niece suffers from Borderline Personality Disorder. She’s never great, but up until a year ago was coping, with counselling, psychiatric support etc. as well as medication. Then that was all withdrawn (apart from the medication) due to budget cuts meaning that resources had to be allocated to those patients most in need…..
    Last week she attempted suicide. Fortunately she recovered and with no permanent physical harm. The result….re-instatement of all the support that was withdrawn.

    So it seems you have to regularly prove that support is needed….and now when this is withdrawn in the future (as it probably will be once she has gone a certain period without any further attempts i.e. the support has helped) my niece knows what she has to do to get it back…….

    • ouremuk66 November 16, 2014 at 7:35 pm #

      OMG Colin!!
      I am so glad she will recover with no physical effects, but at what cost to an already mentally vulnerable person? I fail to understand how the concept of prevention being better (and usually cheaper) than cure is not universally adopted as best practice.
      Words fail me hun. xx

  4. aviets November 16, 2014 at 10:03 pm #

    I’m so sorry you and your son had to go through this horrendous exercise. Education and special needs support are in a similar state here in the US. The name given to it is “least restrictive environment,” which is supposed to give everyone a warm fuzzy feeling because supposedly it’s a good thing to put kids who can’t cope into situations where they’re surrounded by regular ed. kids. What it really is, is “cheapest environment” because our school systems have been slashed by politicians who don’t care about anything except keeping their rich friends (including themselves) from having to pay taxes.
    -Amy at http://www.momgoeson.wordpress.com

    • ouremuk66 November 17, 2014 at 8:48 am #

      Thank you Amy, and sadly it doesn’t surprise me that a world thinks more of being armed to the teeth and waging war than it does about educating its youth, it’s a sorry situation 😦

  5. dinkyandme November 24, 2014 at 11:07 pm #

    It is disgusting that children and young people have to suffer before things are put into place.
    Dinky had to spend time in a nurture group I KNEW wasn’t right for her, but everyone had to see her fall apart before they would pick her back up. I only let it go on for as long as it was necessary. Once the point was understood I removed her.

    I hope that the LEA see sense and keep R at the one place (other than home) that understands his needs and wants.

    I like your analogy about the wheelchair user. I have used that in the past myself, but you put it in a very good way.

  6. MV March 6, 2017 at 8:24 pm #

    Hello,

    sorry for the late reply, but could you tell me what your son’s experience was of the World Scout Jamboree? I also have severe sensory issues and am thinking o going to the 2019 WSJ. Many thanks,

    • ouremuk66 March 6, 2017 at 9:48 pm #

      Hi MV. He did amazingly well! The worst part of the entire 3 weeks were the flights – he’d not been on a plane before and after the first short one, he was convinced he was going to die, which didn’t help as the next one was almost 11 hours to Tokyo. So sleep deprivation was a big thing for him as he couldn’t relax for a second.

      He coped brilliantly with Tokyo, and I think a lot of this was because they travelled as a group, so he was always with other scouts that he knew well. This seems to have been what made the biggest difference to him, knowing he was part of 36 teens who all had each others’ backs.

      The heat and humidity in Japan was fearsome, which shouldn’t be anywhere near as bad in the US. He struggled with the food, as the Japanese versions of western food were not great, but he ate enough to survive (he lost 12 lb overall) and came home to eat us out of house and home.

      The camp sites at Jamboree are massive, but because it’s mostly in the open air, the sounds (and smells) aren’t nearly as intense as they would be indoors. I’d say if you are able to cope well with regular international camps, then you should be OK with the Jamboree. And if you have any more questions, I’d be happy to answer them if I can.

Trackbacks/Pingbacks

  1. A Flight or Fight Kind of Day | Latest News - November 16, 2014

    […] Link:   A Flight or Fight Kind of Day […]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Pyjamas and Prosecco

Mum, Wife, Master Juggler..

It Must Be Mum

A Site for Resources and Reflections That May Help Those Navigating Aspects of the World of 'Special Education Needs'

Lane Hayes

A Kind of Home

Glass Walls

My FTM Journey

Shoestring Cottage - Frugal Living

shoestringjane@outlook.com. Find me on Twitter and Instagram: @shoestringjane

THE LIFE OF TONT

The random musings of a soldier, father, and husband

Mary's Ménages Reviews & Promos

♂♀♂ Another way to Review Erotic Ménage Romances...

The New Normal

An extreme autism experience

Aspects of Aspergers

perspectives from the spectrum

The House of Elyot

Just another WordPress.com site

'Nathan Burgoine

mostly short queer fiction from a tall queer guy

Author Susan Mac Nicol

Adult content warning - Over 18's only please.

Queen of my Castle

A mother's tales of toddlers, tantrums and triumphs

Gay Book Reviews - M/M Book Reviews

Reviews of M/M Themed Books

AutiWomanDifferentBox

This is about not thinking inside the box but thinking in a completely different box

Squeeze the Space Man's Taco

A journey into Cade's world

%d bloggers like this: