#globaldevelopmentaldelay – The Wrong Kind of Snow

Here Comes That Sinking Feeling.

In which I make a clunky link between learning a new sport and parenting a child with additional needs.

I’ve never done drugs. I’ve never smoked a cigarette.

I am, Dear Reader, an Osmond without the teeth and the Mormonism.

I have therefore to choose my highs naturally, and the latest, most modish high is open water swimming.

This is an extremely predictable middle aged women’s pursuit apparently, along with triathlons and getting tattoos to remind you that you are in fact yourself-and not the mother of three complicated individuals who are apparently unable to load a dishwasher, despite being eminently capable of unloading the fridge..

in this spirit you join me about to pack my bag to swim, in a lake under instruction.

I am a rubbish swimmer.

I hate taking children swimming.

I can’t do the sedate and sustainable breast stroke.

Instead I was taught a showy splashy front crawl, which is exhausting and doesn’t coordinate well with my breathing.

Fortunate enough to live bordering the Peak District I have hills surrounding me that are fabulous for running in and bird spotting.

Nearby is a particularly beautiful stream, ending in three waterfalls which people love to swim in. I’d never been despite living 20 minutes drive away for the last 25 years, didn’t even know how to find it.

Six weeks ago on a freezing May Day (oh how I love this country!) in the rain, with 3 people I’ve never met, I swam in it!. It was amazing.

A codicil. Getting out I experienced a continuing drop in body temperature, like a pre hypothermia, that effected my cognition, movement and vision.It was bizarre and unpleasant, and is the reason that if you decide to do this for the first time you do it with someone experienced,who explains that it might happen, tells you what to do if it does and watches you like a hawk to make sure you are OK. (Basically my body wanted to lie down and sleep, but I knew I had to keep warm and keep moving and it would pass) People die in open water, and it is much colder than you or your limbic system is expecting.

Anyway I want more, but I need to improve my swimming and I need to be with someone in case my brain plays hypothermic tricks on me again.

I leave in an hour with everything packed in a ruck sack, and am excited and trepidatious.

14 years ago my body did something extraordinary and heaved out a remarkable individual with no pain relief. (Yes I have mentioned it before and no I won’t stop banging on about it because I am actually a Goddess)

I had experience of birthing and parenting twice, and was well aware that it could be difficult, painful and unexpected, but oh the highs….definitely worth it?

Apparently when faced with uncertainty, disability, and unusual development of a child, coupled with complete lack of diagnosis – a parents body can do strange and unusual things.

Denial is one, fierce overprotectiveness another. Anxiety, depression and an inability to do tasks that were previously achievable all present.

A reasonable reaction at this time may be to lie down and sleep, forever.

I’m afraid sleep is for losers, or people that don’t have to wake up repeatedly in the night to change a teenagers pad/resuscitate a toddler/unblock a PEG feed(delete as appropriate )

If you are new to this extreme parenting I just want to come along side you and say, this reaction is normal.It doesn’t make you a bad parent.It doesn’t make you ableist.It is a reflex your system has that can’t be explained, strikes each of us to a different degree and is not entirely unpredictable..

There is a trick to working through this.

Keep moving.

Keep warm.

Keep someone close by to keep an eye on you.

Make sure you have plenty of coffee and something sweet.

Persisting through this difficult time will bring its own rewards, and teach you about yourself your strengths and weaknesses (believe me you will have both)

It might not be easy. It won’t always be fun, but then training isn’t supposed to be. It’s supposed to be training.

Dear fellow parentsI am in no way minimising the grief, confusion and sheer exhaustion an unexpected Pearl in the bagging area can bring.

But know this. It is possible to survive these early feelings of disorientation.

It is possible to thrive in a harsh environment.

It is possible to be utterly giddy with joy at your achievements. Not always, because come on people this is after all real life,not just a tenuous analogy about sport, but often.

Ease yourself in. Check your breathing.Persist with caution, but nevertheless persist.

You my darling have absolutely got this.

With thanks to Suzie at Peak Swims, currently rebuilding my swimming technique ! (News just in I didn’t drown or get hypothermia but I did work hard and had a massive giggle too!)Check out her page here

Society.

In which I propose we all be more Horton.

So here we are a bunch of sentient animals muddling along on a small blue planet. To help us pass the time, we make rules, create leaders and invent cultures.

After countless centuries of development what have we achieved on our small island?(The UK to you and me).

Fire.

The wheel.

Art, written language, the printing press, literature, public sanitation; these are all great things.

Public services, the NHS, free education. Simply splendid.

Democracy, Government, local and national, to help manage the money system we created. Generally these things should enable us to live comfortably and safely with our neighbours. On the whole they do.

Inequality still exists on a huge scale, and without becoming too political is largely the result of the capitalist system we’ve chosen to live by. (Which is remember only a concept we invented).

As a model of where our values should lie I give you…

Horton Lodge Community Special School!

Achievements are celebrated.

People help each other.

Elders impart knowledge to the next generation, keep them safe from harm and teach them the right way to be part of a wider group.

The more vulnerable are given extra help, but are also helped to use everything they have to give back to the community in whatever way they can.

Individuals within the community have a clear sense of their own self worth and how they fit into the wider community.

And when children leave education….

I fear they come up against historic prejudices about disability and cognitive difference.

They may hear labels used to describe them that are not life affirming.

As they are often unable to earn, they are often treated like a burden to the wider community and State.

They are treated like second class citizens.

There is no public moral outrage when they die in care or in the Health Service, their needs are sidelined because their own intrinsic worth to all of us is not recognized by the “Big Society”

They can’t use toilet facilities as they are not routinely provided for those who need Changing Places.

Poor access on public transport and in towns limits and isolates.

People do not help each other.

In short they are disabled by society.

Shame on us. Shame on our leaders. Shame on us all for allowing this to happen.

Being encouraged, helping each other, being kind, making paths straight for the road ahead, these are the basic requirements of a fair and just society. If they are not followed we all suffer.

Tell them. Tell our leaders, tell each other.

Be kind.

Value peoples talents.

Do not judge an individuals worth on ability to earn.

Practice Pearlfulness be kind eat cake.

Be more Horton.

This blog is part of blog a day for Horton. You can donate here.

A blog a day for Horton

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The Kindness of Strangers

In which we meet an unexpected angel, unawares.

This post originally appeared on Firefly Community and you can find the original here

Christmas this year was a bit of a wash out.

In the seven-week run up, our house had become a breeding ground for all kind of viruses.

All of us (bar Pearl) had flu, colds, infections and stomach bugs, with hardly a day off in between.

I couldn’t exercise and found (who knew?) that if you eat more than usual, while doing precisely nothing your clothes inexplicably shrink.

It was with some relief that January and better health rolled round. The first hospital appointment of the year, on the second of January, seemed like a return to normality.

As Pearl grows older it seems likely that she has a degree of ASD in with the mix of physical, cognitive and sensory problems. She is very routine dependent and her understanding is very experienced based.

We are well used to seeing Pearl’s marvellous orthopaedic surgeon, and Pearl is usually very cooperative. We park up, she gets into her wheelchair (it’s a long walk from the car park to outpatients).

The first working day of 2018 was different. Pearl’s kaye walker (a kind of a walking frame on wheels) was just visible in the back of the car. On the hour-long journey, she insistently pointed at it and shouted.

“Do you want to walk when we get there?”

She deploys her only recognizable word.

“Yeah”

“OK. We’ll see if we have time.”

How blithely I make this throw away comment.

We arrived. There was time. Pearl was insistent.

Now usually when I say Pearl goes in the wheelchair, actually we go straight to the shop and buy fruit and a biscuit for distraction purposes.

Pearl set off in her walker. I hadn’t realized how much she’d grown over Christmas and it wasn’t providing her with much support. At some points she was carrying it around her. It was frankly not ideal.

After getting to the front of the hospital with some difficulty she stopped and signed biscuit. We still had at least another 5 minutes before even entering the hospital, let alone booking in and getting to the clinic. I looked at my watch.

“I have some biscuits with me” (I was a Girl Guide and the motto, “Be Prepared” is engraved on my heart)

“We’ll have them when we get to the waiting room”

This is clearly not the right answer. Screaming, suddenly and out of nowhere, starts. Proper blood curdling, being murdered screaming, emanating from my usually biddable and cheerful child.

Now I’m in trouble.

Is she in pain? It is a long walk,the walker isn’t supporting her.

Is she expecting the biscuit we usually buy?

Is she suffering sensory overload? A lot of people are leaving the hospital and streaming past us. It is very noisy.

Or is she just in a bad mood?

I have no idea, I can’t use her PODD communication book because my hands are full of the stuff we might need for any and every eventuality. I can’t take her back to the car for her chair, it’s too far and we’ll be late. Pearl will not move an inch forward and now she is grabbing random passing strangers.

It had all been going so well.

Suddenly a woman with blue hair, piercings and fabulous boots walks straight towards us. I get ready to stop Pearl grabbing her, when this stylish angel looks straight at me and says

“Can I help?”

This is only the second time this has only happened to me in eleven years and thousands of meltdowns, so I’m a little nonplussed.

My immediate, and rather pathetic response.

“I don’t know. I’d love some help, but I don’t knowvwhat’s wrong, I don’t know what you could do”

Resourceful. I know.

Then the inner Girl Guide kicks in. I have an idea.

This amazing stranger agrees to stand with a completely hysterical child while I run back to the car, at some speed, for the wheelchair. I explain all this to Pearl, who is really beyond hearing at this point. I check again with this magical apparition.

“Are you sure?”

She is!

I leave them with the the emergency biscuits and make a run for it.,

In the distance I can hear her, gently explaining.

“Mum will be back in a minute. Would you like a biscuit? No? You want a hug?”

I turn to see Pearl fling herself into this persons arms and sob messily on her shoulder.

When I return, she is still cuddling a calmed Pearl and speaking to her with great gentleness.

This extraordinary individual then proceeds to apologize for not knowing how to help Pearl into her chair, which is really not a problem at all, and suggests she stays with her while I take the walker back to the car. She does.

By the time I return, everything has returned to normal.

Biscuits have been consumed, legs are rested. All is well

So, when a blue haired angel appears on the front drive of Stoke City University Hospital, how do you show your appreciation?

She deserved an Oscar, a Damehood, at the very least a cup of coffee, but we had an appointment to attend.

Instead I touch her arm look her in the eye, and say.

“You have no idea how grateful I am for your help”

“S’alright, no bother”

She smiles, turns and fades into the crowd.

So, oh stylish one, wherever you are, whatever your experience that led you to help this child, on this day, I thank you from the bottom of my tired, overwrought mothers heart.

You saw through all the screaming to exactly the wonderful person my small girl is.

Saw through all my attempts to remain calm and capable to exactly where I was.

For this I salute you, and will never forget you.

Thank you.

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Pearls of wisdom

In which singing and dancing saves the day.

This post was written for Firefly Community,the original can be found here

I have long thought that life could only be improved by spontaneous bouts of dancing and singing.

I mainly blame my mother for this tendency. I was exposed at a tender age to every Hollywood musical known to man.

Family members were routinely subjected to yearly attendance at a 3 hour pantomime.

My dancing teacher was a huge believer in inclusion. Ability and talent mattered not a jot. Everyone should have a chance to shine. Everyone. It was quite a large dancing school. She was not gifted with editing or quality control skills.

Apart from giving me a lifelong fear of amateur dramatics, because of resurfacing guilt, it has only reinforced the feeling that singing everything is definitely the way forward.

Fortunately, my family tend to agree (the slow drip approach of brain washing works well I find).

Pearl’s school is run on Conductive Education principles, which rely on repetitive movements paired with simple repetitive songs. The die is cast. Entering our house is like a second class, badly written version of Calamity Jane (which is, incidentally, also what I’m considering changing my name to)

On the naming front, I can highly recommend calling your child Pearl. It is relatively unusual, meaning naming labels don’t require a surname. Pearl is remembered and her record easily traced by all hospital departments, as they don’t tend to have another under the age of 80.

Most importantly Pearl is easily replaced in songs.

“I kissed a Pearl and I liked it”

“My Pearl’s mad at me”

You get the picture.

And then courtesy of Elkie Brooks she has a song of her very own. (“Pearl’s a Singer” for anybody under 40). Pearl does indeed often “stand up when she plays the piano”

The lyrics can be changed on uncooperative days to

“Pearls a whinger”

I hope this is character building, it usually distracts her and makes her laugh. Whatever gets you through the day.

I have recently been ‘enjoying’ a particularly long-lasting flu virus with a very bad grace. In the middle of this a cock up from our Local Authority, landed me with a call suggesting that my nonverbal, doubly incontinent child could have her secondary education effectively provided at our local High School. The same High School that had been unable to cope with our articulate, high functioning, academically able, son with Asperger’s. It seemed unlikely (yes really!) for this placement to be successful. I had in fact attended a two hour meeting a fortnight previously where I had discussed and agreed the perfect setting with a Local Authority staff member. I was not happy.

Incandescent rage goes some way to describing the way I reacted to the news,

and was apparently a good negotiating tool, the problem was quickly resolved.

Entering Pearl’s bedroom the day after this fiasco, and still feeling lousy I was greeted with charm, panache and a cheery hello (one of two of her recognizable words) She was warm, giggly and cuddly the perfect, cheering, combination.

As I began the usual, dressing and washing procedure, which is not without its challenges, all I could hear in my head was a paraphrased JayZee.

“I’ve got 99 problems but my Pearl ain’t one”

Life with a disability can be a struggle, but it is often the environment the lack of support, and the daily grind that is disabling. Filing cabinets of admin and frequent appointments can really leech the joy out of your life.

A friend of mine not in the Special Need Parents Club, looked in fear at the severe and complex disability and health needs of a mutual friends disabled child.

“But what does she think when she looks at him?”

She asked.

I thought of the Mother/Carers face when she looked at her son, full of love, knowing, and shared stories.

I think she usually thinks “That’s my boy” I replied.

And on days when love isn’t enough and the physical and emotional strain and reality of Caring is overwhelming, there’s always song.

I’ll see you Somewhere over the Rainbow, the skies there, well you know the rest.

Until then So Long, Farewell, Auf Weidersehn, goodbye.

Property.

In which Pearl #ROFLs and Phil Spencer diffuses a meltdown.

Accessibility is a big issue for us in Pearlie J Towers.

The smallest one has some independent mobility, but is limited,and is likely to become more so as she grows.

We have made some simple fixes to improve things, a grab rail here, a bath step there.

For the last two years we have been wondering, how can we future proof this place?Should we move?

Helpfully Channel 4 programme, Love it or List it deals with just these issues. Presented by go to property experts, Kirstie Allsop and Phil Spencer, property owners decide should they stay and renovate, helped by Kirstie, or sell and move, supported by Phil.

The added jeopardy which is needed to make the show viable is that one seller wants to stay, and one wants to leave. For added excitement Kirstie and Phil are pitched against each other. I am giving nothing away by saying Kirstie nearly always wins, the houses are transformed, moving costs are saved, and Kirstie roundly berates Phil for being a loser.

But today in my house it is very much all about the lovely Phil Spencer. He is definitely the winner (sorry Kirstles).

If you have a child with Additional Needs who has meltdowns let me tell you about the Phil Spencer method of resolving the situation.

Series 3, episode 1. Really pertinent as one of the buyers has reduced mobility.

Picture the scene. Father of Pearl and I watch with interest while Pearl, less interested in property porn than us, plays on her iPad.

The house in question has a tiny upstairs toilet behind louvred doors. Phil decides to hide in the toilet. Kirstie after 17 years of partnering him is not fooled. She slowly advances up the stairs “Phil are you in the loo?”

Pearl’s iPad is dropped. Three of her favorite things are about to coalesce. A sense of anticipation, toilet humour and hide and seek.

As Kirstie approaches the top of the stairs the small one giggles in anticipation. (It has suddenly occurred to me that the scene is almost a complete reversal of the “Here’s Jonny” scene in The Shining, with added toilets and no axe)

The louvred doors burst open to reveal Phil sitting (oh the humanity) on the toilet.

You may never have seen Pearl laugh. When she is really tickled, physically or mentally her muscles tighten, her eyes close, she stops breathing and emits a slow squeal. It is utterly contagious and we all spend an inordinate amount of time trying to provoke it.

Pearl’s reaction to Phil Spencer sitting on the toilet fully clothed, was totally, totally splendid. She cried with laughter, she squeaked, she squealed, she had to be reminded to breathe. She actually threw herself bodily from the sofa and rolled about on the floor, laughing.

Of course we replayed it immediately, and like all classic comedy it did not grow old. It was simply marvellous, we taped her, we taped it, we had it on file for posterity.

This morning during school preparation something upset my lovely girl. I am not sure what as intervening with PODD or using yes/no questions was not even a possibility. (Oh the joy of a non verbal child) Pearl was beside herself, welded to the sofa, the taxi had arrived, fat tears pouring down her cheeks and muscles tight with upset. Something (possibly my refusal to let her have a Creme Egg for breakfast) had gone very wrong. The taxi was waiting, she was having none of it.

I saw the iPad and wondered. Would it? Could it? Could the suave charm and sheer comedy timing of Phil Spencer save the day?

Tentatively I pressed play. Kirstie started up the stairs, Pearl’s tears continued. The taxi was still waiting.It wasn’t going well. Suddenly the louvred doors burst open and there he was, the Man of the Moment sitting in his glory on the loo.

This proved irresistible for a child with a finely honed ear for comedy, the mood in the room changed. The tears astonishingly stop. Pearl begins laughing and decides she must share this comedy gold with her Taxi Driver and Escort.

No matter what happens at the end of subsequent episodes of Love it or List it, no matter how many houses Kirsty radically transforms, know Phil Spencer that you are the winner in our house, and your magical ability to get my daughter on the school taxi this morning is something I for which I will be ever grateful.

Oh and we have decided to List It too!

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Toilet Talk

In which turds resolutely remain unpolished, and I buy shares in bleach.

There are some words guaranteed to make a ten year old giggle.This morning Pearl was beside herself because I said knickers; poo and fart have much the same effect.

We are big on toilet talk in our family as an important precursor to actual toilet training success. This post, is not, I’m afraid, a wonderful campaigning post about the necessity of Changing Places important as these undoubtedly are (you can find one of these here). It is instead a further insight into my complete inability to housewife effectively.

After a Bank Holiday weekend of waiting for a very constipated girl to poo, a delightful combination of movicol and mini enemas started things moving (I’ll spare Pearl’s blushes, and it really isn’t her who needs to be embarrassed by this post). If you imagine a coke bottle stuffed full with hard pebbles you can see that neither she nor I had a great deal of fun.

At the end of the weekend, we returned from our caravan of dreams with a huge bag of washing, and a digestive system slowly restoring itself to normal function. Desperate to get ahead of the washing, which was covered in chocolate coloured stains from both ends of Pearl, I merrily loaded my trusty washing machine.

Completing my first wash load, congratulating myself on my ability to restore order from chaos I hung some of Pearl’s lovely new t-shirts up to dry.

This morning the smell of ordure hung heavily in the air. I smelt the beautifully ‘clean’ shirts and gagged slightly. Then I opened the tumble drier to be met by the same smell. Pulling everything out I found what was apparently a piece of dried chocolate biscuit at the bottom of the dryer. Except it was actually a dessicated poo. Oh yes indeed.

Many irritating things have snuck into my wash and caused chaos in the past, tissues, red skirts, asthma inhalers I’ve washed them all in my time-but this was a new experience. After a full and unexpected bleach of the tumble dryer (accompanied by vocalisations of horror and disgust, and the occasional “oh shit, literal shit!) I went for a run to breathe in fresh air and rinse the idea of tumble dried poo from my mind.

Back, full of the smug endorphins that follow a run, I began to hang the washing on the line in the spring sunshine. I was congratulating myself on saving an unpleasant situation with optimism, quick thinking and bonhomie. What a model of resilient good humour I am. If it was possible to receive a Nobel prize for Special Needs Parenting I was surely on the short list. But wait,what was this? A t shirt, fresh smelling,with a huge brown stain on it, surely not more chocolate? Dear reader I was right, it surely was not.

I’ll admit, I have form with faeces. When The Glory was being potty trained, she snuck into our understairs cupboard for some privacy, it was two days before I found a human poo on the floor of said cupboard.

More recently, this winter, with the electric heater on, a nappy disaster featuring a fast moving Pearl and a subsequent poorly anchored nappy tab, lent me the ablity to use the phrase “the shit hits the fan” non figuratively.

Anyway back to today’s disaster. Running (fast) back to the machine I found a poo squidged into the seal, and, dear Lord why had I not noticed this before?-a damp, glistening offering (Bristol Stool Scale 1 ) which had been through an entire 40 degree wash. Reader you may not be able to polish a turd, but I somehow had managed to wash a whole nappies worth, minus the actual nappy.

At times I reflect on the Special Needs journey and wonder how my life would be were I not living the dream. I can tell you that unequivocally there would be less literal shit, and piss taking, although with a family of five of a sarcastic bent, plenty of the metaphorical stuff.

The time I’d saved “getting ahead with the washing” added an hour to my cleaning of the laundry room, an hours 90 degree and bleach cycle, on an empty machine, and rewashing two loads of suspect smelling clothes.

As you can see I’m very efficient (spell check attempted to change this to effluent how apt!) A marvel of time management. Also practical, and pragmatic, having ignored my initial temptation to throw away all the clothes and set fire to the house to clear the smell.

Now the whole sorry episode is over with no one any the wiser. Apart from you, dear reader, and I trust you to take it no further.

How to Win Friends and Influence People (L.A. edition)

In which the system is broken, and no-one applies common sense to fix it.

It is a New Year, time to look forward with hope at the exciting times ahead. Much as I’m trying to move forward with a song in my heart and a spring in my step (other cliches are available) I am having some difficulty.

Is this because my youngest daughter has a myriad of health, educational and physical challenges. Not entirely.

Is it because my eldest, The Glory, is beset by mental health problems and struggling to find her way through her tricky eighteenth year? Well partly.

Is it because Aspie teen is preparing to transition from a very supportive Special provision at GCSE back into the mainstream setting that caused him pain for A Levels (his choice) Well take your pick.

But actually the thing that is causing me the most stress, chaos and down right anger is my local authority and the way they choose to implement direct payments.

Have you heard of Direct Payments? They are an excellent idea for increasing independence and inclusion. In theory.

Pearl is entitled to support in our local community by a Personal Assistant.As her needs are quite significant, we are able to access 6 hours direct payments for support per week in term time and 14 in the holiday.

We are able to use this money in a way that supports Pearl. Initially she attended Rainbows with a Personal Assistant, and I had someone in to help with housework and ironing too. This was recognised as freeing up my time to spend, one to one with Pearl.

As a parent, you have to be very organised to benefit from this system.You have to keep good records (we have a separate bank account) and all receipts.This is all well and good, after all this is tax payers money and an account must be given.You have to find the PA, set up their contract, submit time sheets and pay wages. In effect you have become an employer.

Every year the situation is reviewed and every year you have to submit all the paper work. Our Local Authority regularly believes that asking a parent to submit all the paper work over a half term holiday, when the child in question is at home, with a week deadline, and veiled threats that benefits will be stopped if the date isn’t met is OK. It isn’t, and also it’s unnecessary and shows bad planning on their part.This however is not the thing that has riled me so considerably today.

Last year it was recognised, that we need more hours.It does tend to benefit the system if Carers don’t break. The money immediately started to flood into the account. Marvellous. Finding a PA isn’t instant. It takes a very particular person to work with my girl.They need to know how she works, what her medical needs are, how to communicate with her, and how to administer emergency meds amongst other things.When someone has been found they need to spend time working alongside us and/or the existing PA and getting to know Pearl, for their peace of mind and ours. As I was increasingly stressed by my caring role I thought it would help to use some of the money for help round the house while the new PA was being found. But no.The system had changed without me being told.This was now a luxury and not allowed. I was a horrible entitled middle class woman for even suggesting it.

It took 6 months to get a new PA up and running alongside our existing (and absolutely marvellous) current PA. During this time the money was beginning to back up.It is absolutely not supposed to do this, because it proves that you probably didn’t need it anyway you grubby little scrounger (sorry I mean valued Carer) The new PA was good, but has not been able to fit her hours around what we need. More money backed up. I’ve been struggling with appointments for all three children and have not had time to source another PA-there is not a one stop PA shop where you can find them.More money backed up.

Pearl attends a residential at her school once a week, term time.Paid for by education,it supports her statement.It is awesome (and before you envy my luck it took two years of ‘negotiation’ with the same local authority to get it put in place).One morning while pondering PAs I had a brain wave, perhaps I could use this backlog as a one off, for Pearl to attend a few extra nights at residential? She loves it.As well as working on Activities for Daily Living (washing and dressing to you and me) she has club activities and spends time with her friends. We could afford three extra nights in total.I reckon she could do two nights once a month. the backlog would have been cleared, she would have benefitted, we would have benefitted. Sorted. In principle education would be happy with this, they are not used to billing parents directly, but if my LA gave us the go ahead, as it was effectively a one off they would explore it.

Well,I have to administer the accounts, find the support,pay the wage bills, train, sort contracts, organise liabilities insurance, and keep records.I am not however allowed to come up with ideas because I’m clearly incompetent. A meeting will be held, a panel meeting where this will be proposed. I am not allowed to attend. It’s not my job and it is likely to be rejected because it’s not usually done.

As a parent this system, designed to support Pearl,has made me feel patronised, unsupported, disempowered. Guilty. Angry. Stressed.Undervalued and misunderstood.

I have to believe this isn’t the LA intention?

So what can be done?

Avoid isolating parents.

It is not enough to have a ‘Parent Partnership’ in existence and then treat parents in day to day transactions like naughty children who cannot be trusted.

Give each parent written instructions of what Direct Payments can be used for.Make it the same for all parents across the county, because do you know what? We talk to each other.

Give each parent a fixed date annually in advance to produce the paperwork.

Put the use of payments in line with the adult service users agreement.

Give family support workers a clear idea of the system and the ability to implement it.As nothing is set in stone they basically have good intentions and no idea.

Remember that many parents have not had their own business, or worked in management positions,and they are under constant stress and probably functioning in sleep deficit.Give parents support to get the system up and running.

As long as the money is being used for the benefit of the child, ethically and legally let it be used.The system has put in in place because you,LA,recognise support is needed.So support.

One last thing.We know the system is being squeezed, we recognise your jobs are tough and unrewarding, but you get to go home at the end of the day,and retire.

Some of us are in this for the long haul.

New Year, New You!

As January draws to a close it’s possible that you have not found the right life plan to transform your mind, body and spirit.You, fellow traveller, have come to the right place!

As January draws to a close it’s possible that you have not found the right life plan to transform your mind, body and spirit. You, fellow traveller, have come to the right place!

Having problems dealing with difficult people? Struggling with your relationship with food? Finding living in the moment tricky? This plan, based on the life experience of someone who I have studied assiduously for ten years offers you some answers, what you choose to do with them is your responsibility.

Last week while navigating my way through the endless appointments which seem to just keep landing on our door mat, I was thinking about people I admire, and what it is that makes them stand out.I realised that one young lady, who was cheerily attending the appointments and embracing all of them in a spirit of curiosity and a chance to meet new people, had a better general attitude to life than I did, and wondered what I could learn from her.

I bring you (insert fanfare) Pearlfulness TM *

Firstly, my people, do not be held back by convention and social nicety.If something amuses you laugh.If it saddens you cry. Stoicism and English Reserve do not necessarily make you happy.Get out there, live life and engage. It’s messy, some people won’t like it, but it is a good way to remain in tune with yourself, and find out who is genuinely worth giving the time of day to.

Secondly, believe in yourself. Pearl knows that in any room she enters she is the most interesting and important thing.If people are staring at her, Pearl is not concerned, it is because she is marvellous. Someone I may consider a heartless, callous person, thinking (at best) “what is wrong with that child poor thing,” Pearl believes is waiting to be introduced. Believe me when you have been charmed by Pearl sitting next to you saying “harro”and plonking her communication book on your knee, your preconceptions about learning disability will be challenged. The moral of this tale is believe in yourself, and if you can’t, fake it ’til you make it.

Be kind. Pearl has gaps in her understanding of grammar. The more complex a sentence, the easier it is for her to misinterpret. She has become an expert at using tells, facial expression, body language and the general aura people give off, to help her.Because of this she is very adept at spotting sadness in people, and will go out of her way to cheer people up who she considers need it.She will offer a smile, a laugh or a half eaten biscuit to those in need. Seeing the reaction she gets I would urge you to never underestimate the power of kindness.

Love your body. Pearl’s body is a tricky and mysterious thing. Sometimes legs unexpectedly give way, tap,shake and hurt.This in no way prevents her from using it as best she can. She adores food and punishing herself by refusing cake would not begin to occur to her. In fact if there was a mantra to live by Pearl’s would likely be, Be Kind.Eat Cake. There are far worse ways to live your life.

Be brave and believe in yourself.Standing behind Pearl watching her walk is a marvel. Her centre of gravity is all wrong, her gait defies convention, and her feet strike the ground in odd places and at different levels.This may put you off considering walking on a wall, trying steps, or Parkour on the sofas. This may be wise, but sometimes being sensible can seriously cramp your style. I have learnt from Pearl to give it a go, push yourself, try something tricky and new. A can do attitude could take you into a whole new area of interest.

Be determined. Pearl’s school runs on Conductive Education principles. Movements are repeated, over and over again,and reinforced by song. I have seen the look on the children’s faces as they carry out “task series” The other place I have seen this expression is the faces of Olympic Athletes, and Wimbledon Champions.If you want to achieve something you need some of this.

Lastly, sing everything. Conductive Education has a ‘hello’ song,a ‘potty’ song, greetings song and standing songs. Not only is this immeasurably cheering, it will lead you to believe you too have the glamour and panache of the late, great, Debbie Reynolds. As a side effect it seriously embarrasses any teenagers you are related to if continued in public.This is always a bonus.

Like any regime, if overdone this has drawbacks.Biting people who irritate you is never recommended and the legal liability of such actions remains yours, and not the responsibility of Pearlfulness TM. Approaching attractive strangers and stroking their legs, may increase your vulnerability to exploitation and seriously embarrass your companion.You have been warned.

The most important message of Pearlfulness TM.is enjoy life as much as you can,at whatever level you can, whenever you can.Life is not only there to be lived and grasped by the pert,privileged,perfect, young or famous, it is for all of us, and it is short. Pearl has lost many peers in her young life and none of us know how long we have.

Her message to you in the face of political upheaval,emotional uncertainty and physical difficulty is that you, yes, YOU are fearfully and wonderfully made, a little bit fabulous and definitely worth it.

If all else fails Be Kind. Eat Cake.

*Have I really trademarked this? Oh come on-what do you think?!

Therapy?

Did you wake up this morning to find out your life was less than perfect?

Did you wake up this morning to find you were the parent of someone with additional needs?

Has your family life taken a turn you never expected?

Never fear, The Wrong Kind of Snow is here to help you manage your expectations, embrace your new normal, and hand you a tissue, before,during,and after, the school run.

Learn from one who knows,that good hair, cake, and sarcasm, can give you a veneer of coping without touching on the real issues.

I, Mother Of Pearl,can personally offer a service to help you laugh in the face of forgotten appointments

You too can learn to kick Local Authority ass-if necessary (and believe me it will be)

I can aid you in using the right word to describe the myriad of visiting professionals (hint no matter how they behave, team although a four letter word never starts with c or ends in t)

You will feel better about your housekeeping (pop in for coffee anytime….consider my home a therapeutic installation)

You can improve your distance running with the mantra “if you turn back now you’ll have to do the parenting thing”

You are most welcome.

Todays lesson involves a gold standard of therapy “Early Intervention” This is an excellent idea in theory. Take a child with issues and through intensive therapy bring them up to speed before they hit school age.

Intensive,regular therapy is expensive and hard to come by, but if it’s efficacy is proven it can cut down on future intervention thereby saving the state money. Neat. The child can catch up with peers or narrow the gap .Fabulous idea.

Have any of you come across Hurrah for Gin ? She has neatly personified the guilt that comes with parenting.I urge you to check out the Shitty Guilt Fairy .Unfortunately early intervention has real life guilt fairies of it’s own-the Professionals.Don’t get me wrong, these are knowledgeable, experienced, well educated, well meaning people who each have their own version of early intervention, that will if carried out by the parent to the letter improve an aspect of the child’s (let’s call her Pearl) life.

By the time Pearl was two, our weeks consisted of an afternoon at The Child Development Centre (you can read more about this here).A morning at School for Parents (a substantial drive across a county border). A morning of hydrotherapy. Physiotherapy and Speech Therapy programmes to carry out. A morning at the local mums and tots just to point up the difference between her and her peers.Random visits to the hospital to search for the answer of the enigma that was Pearl with Paediatricians, geneticists, neurologists and a variety of puzzled and interested student nurses and Doctors. Between this I was attempting to keep up my Speech and Language Therapy Registration and feed and parent the other two children and sustain a marriage.It was hell, but I foolishly believed I could continue at this pace in the short term as it would miraculously cure Pearl and life would return to normal. How fondly we would look back on her early difficulties as she received her Nobel prize for Literature.

Truly some of this pressure came from within, but it was unwittingly reinforced by the Professionals individually ‘supporting’ me while not seeing the wider picture.

I would love to know how models of diagnosis and therapy work in other countries.Our Western model of medicine,and our work ethic may be leading us to a mistaken belief that we can work our way out of difficulties.That proper perseverance and elbow grease can solve our problems through sheer exertion and force of will.Pearl was never going to be fixed by tonnes of early intervention.What we needed as a family was support, time to enjoy our girl’s babyhood, practical help with physiotherapy and the necessary equipment, not to become a problem that was there to be fixed.My girl has such strength of character,stubborness and determination,I wanted a professional or two to recognise that and celebrate it with me,not to point out her difficulties and attempt to eradicate them.To be fair the same medical model that wants to fix the Pearls of this world is exerting it’s own strain and pressure on the very Professionals that implement it.The system wants to see they have effectively fixed as many people in as an efficient way as possible.

All this can lead, for the best motives in the world, to a society that sees disability as a problem, and fails to see the individuals behind the case studies.

So what can be done? As parents it’s important to try to keep a sense of who your child is and who you are as a family. This is really difficult when you are going through tough issues and being asked to make tricky decisions with little support.Try to get someone on your side, perhaps a professional who knew you and your family before you became “a problem”. Organisations like The Carers Trust, Carers UK or Contact a Family often have local representatives who can help you make sense of what is beneficial and what can be left until later.

A health visitor came to visit us, and was flabbergasted at how my week was structured, and how little support I was getting.I having become sucked into the Special Needs Vortex had lost all sense of what was a reasonable expectation of family life.

As parents you may have to sit on the naughty step and refuse to do everything-I’ll warn you, you may get a black mark.

Alternatively join me and other parent carers in learning how to look as if you have carried out all the therapy, while actually you have been cuddling your child as they watch someone on youtube unwrap a giant Easter Egg.

At the end of the day your child is part of a family,not a state funded research project.

Host.

In which we commune with nature and the life scientific.

I am currently taking part in an experiment aimed at conserving some of Staffordshire Moorlands wildlife.Oh, I do love nature generally. Being an outdoor girl I love watching the changing seasons, spotting nature red in tooth and claw, even observing road kill up close on a country run interests me.

This wildlife, however I feel more ambivalent about.

Pearl goes to school over the border. Clearly The Real Housewives of Cheshire have no particular difficulties with parasitic infestations of any kind, and are far too busy being sprayed orange to give anything else headroom.

I however, as a transplanted Essex girl,have plenty of headroom and freakishly thick hair into the bargain.I like hugging. So does Pearl. She is currently hosting (purely for conservation purposes obviously) a herd / nest / itch/ incubation, of Staffordshire Moorlands finest head lice.They are a particularly hardy strain.It gets cold on those moors and they like nothing better than a mane of Pearl hair to snuggle into.

Despite my propensity for Toni & Guy hair colour (God bless the junior who admired my “natural”hair colour last week) I am itching. I used to think of this as a personal failing, but these days I am inured to it. I am simply a marvellous host.

I realise you lovely people have never struggled with such base and unpleasant visitors. When I say we’ve been clear of them for six months you’ll know that’s not the case here.

At this point if you are thinking of sending in helpful tips to get rid of the little buggers please don’t. Short of dousing them in paraffin or shaving our hair off completely there is nothing I haven’t tried, including:

Derbac M. The most hideous and strongly smelling pesticide you can apply to a human. No longer available for head lice treatment it is the only lotion I have found that truly works.

Tea Tree shampoo, to discourage them from hitching a ride. They don’t like the smell, apparently, unless they’re from Staffordshire in which case they just don’t care.

Electronic beeping combs to electrocute them. Makes you feel empowered and slightly psychopathic. The Glory is still having counselling from being held down and combed with one, while I maniacally shouted “die, die,die”. Doesn’t work though.

Nitty Gritty Combs. Now actually they really do work. I possess five. (At £10 a pop you can work it out) Can’t find any of them. Where do they go? Has the dog buried them? Are the teens hiding them? Has the Mister found a new and innovative technological use for them? When he (the writer of apps) creates one that kills head lice,then,then I’ll sit up and take notice.When I say they work, they work if you comb hair throughly and meticulously every other day.

Have you met Pearl? She’s feisty. She has sensory issues. She’s is non verbal but by no means silent. Her screams are ear drum fracturing .Oh and she hates having her hair brushed with and ordinary brush and she’s not big on keeping still. Chasing a wobbly girl around a room with a clump of her hair in my hand wielding said comb is not one of my favourite pastimes.

So as a nature lover I have some questions for the Creator, evolution or any passing naturalist. What are head lice for? What is a head louse’s contribution to the life cycle? What eats a head louse? What biological function do they serve? In short what does Pediculus Humanus Capitis bring to the party?

Urgent answers are required. If they are indeed worth conserving the comb goes in the bin. If as I suspect, no one really knows, stick your head out of your window, and you’ll be able to locate Cheshire from the direction of the screaming.

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