Never Work With Children or Animals

Yesterday, Monkey, pooch Barney and I spent our afternoon attempting to have our photos taken for a local magazine. In Februrary, I wrote an article and the editor rang me last week to arrange for us to meet a photographer in a local park.

While I was nervous about this concept, the pooch merely drooled in preparation and Monkey, well he bounced off the walls with excitement. Before heading down, I prepped Barney with a good brushing and clothed my monkey - reminding him as any mother would to 'stay clean'.

It all started going a bit wrong as the door slammed shut behind me. At 10 months old, Barney is currently in those difficult puberty years - just the scent of a female is enough to send him flying and my shoulder into dislocation! As we walked, we struggled as he soon knew he was going to the park - his local 'meat market' which features his favourite watering hole. Monkey struggled as well for he didn't want to wear a jacket as 'its spring'.

We got to the meeting spot 5 minutes early and were greeted by a message on my phone that the photographer was running 15 minutes late. As we waited, I attempted to calm the troops...and failed!

The photographer turned up twenty minutes late with a series of shots in mind. He was very kind and seemed understanding...although I think his patience as well as mine was tested in the events that followed!

Shot 1: The first one required me to be hands-free of dog and Monkey. I carefully tied Barney to a tree so I could pose...however, at 8stone, his collar couldn't take the strain and snapped!

Shot 2: Dog running. Now, my dog likes to think of himself as a weekend rugby player when Monkey is involved. The first run of this shot went well with the pair of them running up a field and back towards the photographer. Unfortunately, the second run-through involved Barney rugby tackling Monkey! Not good!

Shot 3: Family walking together. This one went remarkably well...however, I really am unsure if Monkey managed to look happy in the shot! Oooops!

Shot 4: A shot was needed of us walking in the distance...and we had to be high up in relation to the photog - which meant loads of walking! A freezing cold Monkey now had sore feet as well!

The rest of the shots were of Barney...who loved the camera.

While it was a learning experience, I'm not sure whether or not Monkey or I will be volunteering to be photographed for a mag again. On our walk home last night, all I heard was how Monkey didn't want to be 'famous' and wanted me to say 'no' to anyone offering us this chance again...

At least he's had his 15 minutes early on - saves me from having to worry about whether he'll be wanting to audition for Big Brother as an unruly young adult! Yes, I couldn't cope with that!

Funding Trap - Part 2

One strongly worded complaint to Cornwall County Council along with a plea for help to our MP, Julia Goldsworthy, later and we seem to be getting somewhere. I have now had a call from Children with Disabilities to say that they will be keeping Monkey's transport running until the dispute finds resolution with 'senior management'.

At least something is happening - but I can't stop Talking Heads' track "Road to Nowhere" from playing in my head.

Since my complaint went in, I've looked at the Aspergers/ADHD policy for Cornwall which says that any diagnosis in that range MUST be dealt with by Children, Young People and Families....not sure why it's gone back to Children With Disabilities. One of my demands has been a black and white policy and carrying through of this policy...so why go against it in resolving this problem? There's obviously been a major cock-up in dealing with this problem -so why make it worse by going against policy until they can resolve it?

Has anyone reading this had this problem? If so, what happened? I'd love to hear stories...stories keep me going in times like this! Plus, precedents are always helpful!!

I'm going to do my best not to think about it....will just let David Byrne serenade me I think for now.

Our family

Being an only child has at times left Monkey begging for a sibling. Perhaps it's what he sees in his acquaintances as 'normal' or the desire for a full-time playmate, but he wants one. Being on my own for nearly five years has meant that the opportunity for another hasn't arisen.

I understand his desire for companionship - we all have it in us, whether we're Aspie or not. I try to allow kids to freely run in and out of our house at every opportunity, but must confess that, at times, it's just TOO much.

While we have 3 cats and a 10-month-old pup who he considers his family, I'm aware that they can only fulfil his need for companionship so much.

The other morning my young, mad scientist hopped under the duvet with me for an early morning chat.

"Mummy?"

"Hmm?" I mumbled drowsily.

"I'd really like a baby brother you know."

"Well, I'm not ruling that one out, but it's a touch unlikely. Anyway, if I had a baby today, it wouldn't be able to properly play with you for at least a few years - by that point, you'll be wanting older friends," I sleepily argued.

While he remained silent for a minute, I swear I could hear the cogs spinning in his head.

"Isn't it 7 human years to every cat year?"

"Yes," I was puzzled now and far too awake for my own good.

"What if you and Didgy (our cat) made a baby?"

"Wha?"

"It would be so cute. It would Didgy's head and and a human's body and in just twelve months it would be as old as me."

"Erm, genetically it's fairly impossible for the species to cross."

"Well, what about the Liger? Even you said they were cute. A Cuman would be just as cute."

Oh dear.... My mind is still racing with images of cats heads attached to human's bodies with a mad scientist who looks quite Monkey-like smiling proudly at his offspring.

Until his cuman is developed, preferably without my genetic code - groups like Paws 4 Thought are training Autism Assistance Dogs who are helping children on the spectrum develop and grow.

Happy Mother's Day To Me

Well, here in the UK it's Mother's Day - a day for mums to be honoured and respected and well, call me a dreamer, but to be pampered as well.

Monkey made me a beautiful card at school on Friday and in a way that maybe only an Asperger's mum could appreciate, it read: "To Mum. Special Mum. Everyone would love a mum like you. xxxxxxxxxxxxxxxxxxxx"

We had a bit of a fall-out this morning as we tend to on days which break from the norm. Basically, I longed for and needed a lie-in. I had flu a couple weeks ago and am left with a nasty cough which is keeping me up a bit in the night - leaving me, well, exhausted.

My first wake-up was at 3:30am at which point, I requested Monkey return to sleep. The wake up calls continued precisely every thirty minutes until 7am where he switched into hyperdrive - waking me every 15 minutes.

I had explained many times, from under the duvet, that I wasn't feeling well and that it was Mother's Day and I deserved some TLC. Instead of understanding, his response was aggressive. Sensing a situation brewing, I stumbled downstairs - unhappy and fed up. Ironically, at that point, Monkey seemed to realise that on Mother's Day, he should be making me feel special and realising his mistake, began crying. One glance at that sad, sad face made me realise that sleep depravation makes a mountain out of any molehill.

We've said our 'sorrys' now and all is better. We're off for a swim and then to Tesco so he can choose some flowers for me. I did suggest that he go with a friend's daughter to the shop so I would be surprised but he said he wanted to make sure that I liked them.

Asperger ASBOs

While the nation's papers are filled this week about the story of a the youngest child to receive an ASBO at the age of ten, I recoil in horror.

Schoolboy Lewis Green, a "South Yorksire tearaway", had had his identity revealed to the public after receiving one of the harshest ASBO's given yet. According to a report by Sheffield Today, "Lewis Green has terrorised neighbours, threatened children with knives, assaulted his family, smoked cannabis, drunk stolen beer, burgled homes and smashed cars."

While his mother claims that he has mended his ways apart from the odd cigarrette, she believes that it is not so much a problem with bad parenting as it is due to her son's Aspergers.

Anyone familiar with Aspergers is far too aware that if it is mismanaged by parents, education, health or social services, the results can be disastrous. Not just for the family and those in contact with the child, but for the child himself. Anxiety, frustration and the chaos of every day life combined with a does of testosterone can lead to a very aggressive and anti-social child...whether they have Asperger's or not.

While my heart goes out to Stephanie Green, Lewis' mum, I wonder just how much she and Lewis have been let down by the system. With another child described as a 'model student', it indicates that perhaps this is not just another incidence of 'lazy parenting'.

Reading her stories of being threatened with knives and being covered in bruises makes me recall some of the stories about Monkey I'd rather forget, like being subject to physical abuse and aggression. However, by remembering those bad times, it helps me to appreciate the good times and praise him accordingly.

Unfortunately, Lewis Green appears to be part of a growing trend. In May 2005, the National Autistic Society warned in the Guardian that children with autism and other serious psychological conditions are being targetted by the government's controversial anti-social behaviour orders (ASBOs).

Just told Monkey what I was writing about and asked how he felt about this. He agreed that the behaviour was extremely naughty and naughty behaviour means you need to go to court. It seems that the ASBO has taken the autistic black/white view on bad behaviour. And of course, Monkey had to add: "Good thing the worst I do is not clean my room." Ah, he must have remembered it's treat day.

Autism may be caused by as many as 100 genes

Those who have experienced autism know it's complex behaviourally. According to a Reuters report, genetically it's posing a real challenge for scientists who are realising as many as 100 genes involved.

Experts have determined that autism has a genetic cause, however to understand it better, the DNA of autistic patients and their families are being analysed to determine the precise genes affected.

Funded by the National Institute of Mental Health, Dr. Jonathan Sebat of the Cold Spring Harbor Laboratory in New York and colleagues across the United States, in Finland and in Britain looked at the DNA of people in 264 families.

Dr Thomas Insel, director of the National Institute for Mental Health said: “These findings certainly complicate the search for genes contributing to autism. These are rare changes, dispersed across the genome, and they tell us that autism may be the final common path for many different genetic abnormalities.”

The small changes are not so much genetic mutations, rather they are copy number variations — extra copies or missing stretches of DNA. An example of this was a child with Asperger syndrome was missing DNA from a stretch of 27 genes.

I, for one, am eager for follow-up research for these findings!

The funding trap

As much as there are highs and lows in caring for a child with any Autistic Spectrum Disorder (ASD), the lows never get quite as low as when dealing with local government.

My dear monkey finds himself quite lucky in Cornwall as since 2005, he has been entitled to respite once a fortnight at a fantastic County Council run provision for children under-12 with ASDs. He attends with a high-functioning group of children and enjoys his stays there. As a carer, it provides me with one full night of sleep a fortnight and a break which I can't have otherwise.

Yes, we are both lucky. Or shall I say, we were lucky.

From 2005, after our needs were assesed, this service and transport to and from was funded by the Learning Disabilities budget, however the reshuffle of Social Services post-Victoria Climbie meant that his services were funded by the 'Children with Disabilities' Team from 2006. And now, I've found out that from 1 April 2007, funding will be provided by 'Children Young People and Families'. They have decided that from 1 May, they are unable to fund transport for my monkey.

As a child with aspergers, surely he has a disability - after all, he's entitled to Disability Living Allowance and he requires a teaching assistant to enable him to attend mainstream education. However, children with disabilities has a cut-off IQ of 70. Yes, 70.

Now, I've met kids with cerebral palsy and all sorts who have IQs higher than that - are we saying that they fall within the box called 'normal' and have no needs?

As a child living within 'the poverty zone', my monkey is counted on the government list as a 'child in need' which means that "Children Young People and Families" are duty-bound to look after him...

As a carer, I've been assessed as being entitled to funding for respite...

But they have cut the service - without a reason. I pressed for a reason and was given NONE. I
asked if it was budget constraints, asked if they wanted to free up much-needed space at the respite facility...but they could not give me an answer. The assessments say he needs this service - so why make it impossible for us to get it?

I'm ringing our MP today as well as filing a complaint as I'm fed up with saying 'unfortunately my son's IQ is not below 70' - which I don't mean but feel I must say in these circumstances. At the moment, I am thankful every day that we have been blessed by Monkey's high-level of communication, reasoning and his ability to work within the 'mainstream' with help. There is the potential that my monkey will be able to function within society as an adult and perhaps even live independently.

However, not only our rights, but our futures are being determined by this decision.

I am a non-driver, however I do receive mobility payments for us to use for this sort of situation. I can afford the £20 taxi fare each fortnight - however - I can't book this taxi as legally. Taxi drivers cannot take children under the age of 12 unaccompanied unless it has been arranged with Social Services, Education or Health.

If Monkey had a low IQ or if there were child abuse allegations, I would have this service without question. While I do understand the need for protective measures, what about preventative measures and well, appreciating the needs of all clients?

I'm taking a stance for Aspergers here as this is not the first time that an Aspergers child has fallen into the funding pit. I've heard many off-the-record cases from far too many sources.

Legally, rights are being denied and I fear that Social Services are not only setting themselves up for a legal minefield, but are, more importantly, letting the service user down.

Has anyone else experienced the Asperger's funding trap? If so, let me know and comment!