Monthly Archives: September 2013

Branded Unteachable

As you may be aware my son is 8 years old and has a firm diagnosis of Autistic Spectrum Disorder and various professionals have also mentioned dyslexia and PDA as probable issues as well, however we have to wait for assessments on these. Today another label appears to have been added to my son ……. UNTEACHABLE.

According to the LEA transition team he is “difficult to engage”, “…insists on staying ‘in character'”, “needs to be in control” and has “absconded on several occasions”. I nodded sagely through this whilst my inner voice screamed “WTF, you know all this from his diagnosis and school records, he isn’t any different to how he was before the summer break, YOU are supposed to know how to help him with these issues not tell me the unit may no longer be the right setting for him!” The LEA representative couldn’t advise on ANY maintained schools, mainstream or special, that could meet his statement end needs as they’d already turned him down for an emergency placement, however she did say a letter would be sent to all LEA special schools asking if they can meet his needs now, how they can offer a permanent place when they couldn’t on a temporary basis two months ago is a magic trick I’m dying to see.

However, I still had a glimmer of hope. Although one of the Independent special schools couldn’t ‘meet his needs’ (a euphemism for not wanting him) I was still waiting to hear back from a second one, this one had spoken knowledgeably about ASD and PDA, when I explained about his behaviours they said they couldn’t see it being a problem for them, surely they will come to our rescue and then it’s just a case of getting the LEA to agree funding.

On returning from the meeting I’m thrilled to find an email from the Independent school I’ve pinned all my remaining hopes on so you can imagine the shock as I read on……..

“Currently our primary centre would find it difficult to support R due to the challenging behaviours that he can display. We are not a school that is trained to deal with high levels of behaviour and we don’t restrain our young people which may make it difficult for us to support and control Robert when he is in a high state of arousal.”

So, there you have it, my son is (unofficially) unteachable. Where we go from here I honestly don’t know. What I DO know is that this Amazon may be down but I’m NOT out, I will take a day or so to regroup and research then I will come up with a new plan of action. In the meantime I will remind myself that my son is oblivious to the fact that the education system wants to write him off at only 8 years old and that, as long as I have faith in him, he will remain oblivious.

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Humbled

Wow, I knew I wasn’t the only person struggling with a child with behavioural problems and I knew that one or two on my friends list might relate to what I was saying in “The New Taboo” but over 300 views in 24 hours, from all corners of the world – I am humbled that a piece I wrote while recovering from another onslaught and feeling pretty low about it all could have touched so many people.

Welcome new friends, pull up a chair (hit the follow button, like me on FB or follow me on Twitter) and join me in the revolution to break The New Taboo and make Child-on-Parent abuse understood and to make the powers that be accept that IT IS REAL, IT IS NOT THE PARENTS FAULT and THEY MUST HELP before it is too late.

The New Taboo

You may have seen me at Parents Evening or in the supermarket and noted the long sleeve tops in the middle of summer, your gaze has lingered questioningly on the heavy make-up on the suspiciously puffy eyes, you may have even thought about quietly slipping me the business card to a support group for victims of domestic violence.

The litany of injuries to date includes several broken toes, a broken finger, a broken nose, constant fresh bite marks and bruises to both arms, bald patches where he has torn my hair out, black eye, gouges to the face, constant fresh bruising to both legs and back and several teeth either loose or knocked out. Add to this 3 pairs of broken spectacles, several plates and mugs smashed, a smashed phone, holes in internal doors and several larger items of furniture damaged beyond repair.

BUT here’s the secret – I’d confide in you if it was my partner inflicting these injuries on me, it’s no longer taboo to speak up about that, no my secret is much worse, my secret is still taboo. In a way I am the victim of domestic violence but the difference is that I can’t just walk away ……… The perpetrator is my own son. My son has just turned 8 and was diagnosed with Autistic Spectrum Disorder when he was 6.

You see, behaviourally, my son is trapped in the Terrible Twos. At two it’s easy to put them for a time out, at 8 you can’t get near them without risking severe injury. The professionals are aware of these incidents, it was the violent behaviours that led my GP (after several years of my asking for help, it was only when she witnessed a meltdown for herself) to refer him for assessment. In his paperwork I have a letter from Clinical Psychology and the very first line reads “…I hope you made it home ok” following an appointment that was cut short after 10 minutes due to a meltdown, he is currently excluded from school as a health and safety risk and yet nobody wants to help. There are no services in the UK (and probably the rest of the world) for parents who are at risk from their children, even social services will only look at whether you are likely to snap under the pressure and harm your child – if they think you might your child is then classed as ‘at risk’ from you when, in fact, the opposite is true.

Don’t for one second think this is rare, at one time people believed domestic violence didn’t exist but it was just that it was taboo to talk about, victims suffered in silence. It’s time we break THIS taboo. It’s time to start shouting. It’s time for society to stop turning a blind eye. It’s time for proper advice and support it’s time for those of us living this to stand up and admit I AM A VICTIM OF CHILD-ON-PARENT ABUSE AND I AM NOT TO BLAME

NT/ASD – Daily Routines, part one – Making The Bed

NT – remove linens from the bed and place in wash basket, remove clean linens from cupboard, fit bottom sheet onto mattress, place quilt into quilt cover and pillows into pillowcases, arrange pleasingly on the bed, scatter cushions optional. Take wash basket downstairs, place linens in washer, wash, dry and iron linens, fold and place in cupboard until needed.

ASD – remove bedding from the floor of whatever room the quilt and cover has been dragged to, ensuring child is not wrapped within it cocoon-like, return to bedroom and remove what remains of the bottom sheet from the bed, if you are lucky this will be dry and free of suspicious marks and may even have been fully or partially removed for you during the night. Search the house for the pillows, not forgetting the dog bed, under the stairs and the little cupboard he has appropriated as his ‘den’. Remove pillowcases, search for pillowcases that had already been removed, make mental note to buy new pillows, throw the suspiciously stained ones away. Go to cupboard for clean linen, realise from hand prints that you are not the first to do this, search again for the what-was-once-clean linen whilst hoping it is still reasonably clean, find linen – breathe sigh of relief that while a little dusty and extremely crumpled it is clean enough, think “it’ll do, it’s not like anybody else will see it!”. Place bottom sheet on bed, place quilt into quilt cover, remove quilt from quilt cover and remove Lego pieces from quilt cover, replace quilt in quilt cover, check pillowcases for Lego pieces, place pillows in covers, throw quilt and pillows haphazardly on bed – knowing that by lunchtime they’ll all be on the floor again anyway. Sit on bed for a breather, realise something doesn’t feel quite right and remove all bedding from the bed again. Check mattress, no not that, raise mattress tentatively, drop mattress, find toolbox and retrieve hammer, nails etc. return to bed and remove mattress, repair and replace bed slats that have been broken – wish you could blame it on the adult style of bed gymnastics but knowing THAT’s just wishful thinking, make mental note to have the talk that starts “Mummy’s bed is NOT a trampoline” again. Replace mattress and bottom sheet, decide to save time and leave quilt and pillows on the floor anyway. Realise in the evening that you forgot to put the linen in the washer and make mental note to make that your first job in the morning…….hopefully………

Two Years On – Advice to Newbies

Those of us with a few years on this journey will often be asked for all sorts of hints, tips and advice and every one of us will offer a different view, this must be extremely frustrating for you newbies to the world of autism! The thing with the spectrum is that it IS a spectrum and every child on it has their own unique difficulties and strengths, no two autism families will have had the same experiences, when you then add in the cultural and geographical differences in therapies, specialists etc its a wonder ANYONE can make sense of the help (or lack of it) available. I am now several years post diagnosis and, through trial and (a lot of) error I’ve found the best people to turn to are other autism families, professionals may have the latest theories, the most expensive resources and an air of “trust me, I know best” but they don’t live this life, they get to go home after a day at work and close the door on autism, we don’t.

So, what advice would I offer to a parent with a newly diagnosed autistic child?

1. TRUST YOUR INSTINCTS – nobody knows your child like you do. Experts, family, friends and other ASD families will all have an opinion but you are the only one who lives with this 24/7, only you know what may or may not work with your child. Listen to everyone, research as much as you like BUT if you ‘go with your gut’ you won’t go far wrong.

2. ACCEPT HELP – I am probably the worst person in the world to take advice from on this as I’m ALWAYS turning down the help offered by friends and family as I don’t want to burden them or I don’t think they’ll be able to cope (I know how much of a handful The Whirlwind can be). I am, however, slowly realising that I NEED help, I can’t carry on 24/7 anymore and for my own sake as well as The Whirlwind’s I need to be able to recharge my batteries. There is a reason why airlines always tell you that in an emergency you should put your own oxygen mask on first – what good are you to your child if you are incapacitated – YOU MUST TAKE CARE OF YOURSELF so you can take care of your child.

3. STOP SWEATING THE SMALL STUFF – ok, so you haven’t managed to dust or vacuum in over a week, the laundry is mountainous and you’re seriously contemplating replacing all crockery and utensils with disposable ones but ask yourself, is your child happy, clean and at least half dressed? Even though its dusty is the house clean ‘enough’? You can’t do everything and unless you can afford a cleaner every day (even if your child could get over the fact there’s a stranger in the house!) you can forget about having a completely spotless house. Decide what YOU can live with and tell visitors that they can like it or lump it, if they’re that bothered they can always roll up their sleeves and get stuck into it themselves (see 2.)

4. JOIN SUPPORT GROUPS – whether online or in your local area you will get to meet other families who will just ‘get’ your life, they will accept you as you are, they will celebrate and sympathise with you in equal measure, they will become ‘family’ and you will wonder how you could ever have NOT had them in your life, even though you may never meet in ‘real life’

5. KEEP A SENSE OF SELF – It is NOT selfish to have a little bit of ‘me time’, when your child is at school, at a friend or relative’s, out with a carer, sometimes you need to say “sod all the jobs that need doing, they’ll still be there tomorrow”. Have some of that time for YOU, take a nap, watch a film, meet a friend for lunch or indulge in a hobby. Yes you are an Autism Parent but that isn’t all you are, do not lose yourself in your child’s diagnosis. This one is probably the hardest to achieve as autism seems to invade every part of your life, I know how easy it is to let it take over and become the ONLY thing in your life but even if you can only manage an hour a week, try and make that hour a time when you don’t think about, talk about or research autism at all.

There But For The Grace Of God

A sad day today for the autism community. I woke to the sad news on Flapiness Is that a lovely woman who’s struggles with a behaviourally challenged autistic child resonated strongly with me and who I always believed to be strong and positive yet realistic has been driven to the depths of despair and (allegedly) attempted to take her own life and that of her daughter. (News story here: http://m.record-eagle.com/TRE/pm_104242/contentdetail.htm?contentguid=uP8D2ONu)

I found Kelli’s blog, via Flapiness Is, about a week ago and felt an instant kinship. No matter that she was American and I was English, no matter that she was fighting Insurance Providers and I was battling the NHS and LEA, no matter that her child was a teen and mine is only seven – no, here I had found an autism sister going through much the same struggles as I!

Finally having raised the funds Kelli had been able to get Lissie into a program to help with her behavioural problems and, although it was early days, there did appear to be some small signs of success. I don’t pretend to know Kelli or her family, I had only recently discovered her, so I cannot comment on the circumstances, I cannot know what was “the straw that broke the camels back” however I can understand how broken down by the daily abuse some autism mothers (and fathers, and siblings) face.

I don’t want to start an argument about wether her actions were right or wrong, understandable or anathema to everything a mother stands for – I’m sure there will be plenty of that in the mainstream media and forums. What I want you, dear reader and friend, to do is to think – just for a moment – and tell me honestly have you never, ever, even for just one solitary fraction of a second, felt so completely exhausted emotionally and physically that the thought of leaving it all behind didn’t seem like the only solution? And then tell me honestly, wasn’t that thought immediately followed by the worry over what would happen to your complex autistic child in a world that doesn’t understand and barely tolerates this 1% of the population? For most of us that second thought is enough to negate the first thought BUT what if you’ve fought and fought the establishment, sometimes for decades, having doors slammed in your face, having complete strangers feel justified in questioning your parenting, being used as a punchbag by a child you love with all your heart and then, one thing comes along, one thing you weren’t prepared for, one more thing to cope with but you have nothing left in reserve? The saying is “let he who is without sin cast the first stone” I would say that this is a situation where everyone will have an opinion but none of us can ever truly know how broken down and alone Kelli must have been feeling.

I will leave you with one thought before ending this post “there but for the grace of God go I”

Flapiness Is can be found at:
http://flappinessis.com/