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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Seasons of Change

I see summers of small girls’ past, mine, the Glory’s and my decade old darling

This post appeared  before the summer holiday, on Huffpost

 

The summer holidays are fast approaching. School will soon be out.

The weeks have been filled with trying to cram in as much paid work as possible, organising personal assistants, booking holidays and filling The Glory’s expectant cardboard box with university essentials.

This holiday is the beginning of huge change in our family. One will leave, one will go back into mainstream from special education, and one will enter her last year at a fabulous primary school.

My two girls, the first who has been stymied by acute anxiety, whose perfect 18 year old body she mistrusts, despises and longs to change.

The smallest, full of self esteem, whose body is unpredictable, whose muscles are not trustworthy. I am in awe of what she makes it do, through practice, persistence and sheer bloody mindedness.

My own menopausal body, which has thrown up surprises, moods and huge chemical imbalances. I am in awe of that too, and its production of three independent minded beings.

Perhaps it’s the sense of approaching change, but I am filled with deep unspecified yearning.

My go to strategy at such times is to ramp up activity (half marathon training anyone?) Add a couple of blog challenges, plan career development and start a few projects.

Experience tells me that distraction will work in the short term, but that carrying on at this pace will lead to burn out. The sensible part of me looks around for a cause.

This morning, when I woke up suddenly in the middle of a dream, I realized. It’s Pearl. It’s always Pearl.

In ten years of life together,this child has taught me plenty. We are inextricably linked. She needs me in a way that my other children simply don’t.

Someone once told me that when babies are first born they don’t know where you end and they begin. Having so recently been part of you, they think they still are. They quickly grow out of this stage and make bids for independence.

Pearl is one of the most independent minded people I know, she still seems to believe I am part of her. On tired days she gives me a spoon and uses her hand to guide mine to her mouth. She snuggles deeply into me when life is tough, as if trying to merge straight back through the skin and become part of me again.

I know Pearl’s body like I know my own. By 10 my other two were becoming private, dressing themselves and choosing clothes. Telling me if bits hurt.

I see all of Pearl everyday. Changing soiled nappies, noticing differences in muscle tone. Fighting tight calves into splints. Noticing her body preparing for approaching womanhood – I too don’t know where I end and where she begins. The smell of her hair, the feeling of her in my arms is always present.

Pearl, is non verbal but anxious to communicate. Gesture, vocalisation, the superb PODD book all used daily, permeate our lives. She though would prefer me to be her communication aid, and retains a simple belief in my psychic abilities, which are frankly non existent.

All of this strength of feeling and entanglement is now becoming muddled by her hormonal changes, which are leading to the normal mum/ daughter aggravation, further intensified by her need for me. She wants me, she wants to do it herself. She needs me so she can do it herself. It’s all very emotive.

This may go some way to explain my nightly dreams at present. Every single night Pearl talks.
it is always the first time. It is always realistic, her voice, slightly mangled consonants but clear words. It used to be “Mum”. Now it’s been replaced by sudden nouns describing where we are in the dream, followed by incredulity, growing vocabulary and a sense of wonder and relief.

And then I wake up.

Days filled by campaigning, explaining and ardently desiring equality and a proper acceptance of all, replaced by nights of yearning and longing, for my girl to turn to me and speak.

I see summers of small girls’ past, mine, the Glory’s and my decade old darling

Summers of the future shimmering in the distance.

How will my body change, will it remain healthy enough to carry on caring?

Will the Glory learn to love herself as much as I do?

And Pearl herself? Will my dreams come true, sounds turn to words? Will she live a long healthy life? Will her muscles age well allowing her a measure of independence?

Our bodies, perfect in their imperfections, changing with age and experience and fearfully and wonderfully made.

 

 

If you need extra support with caring commitments join the community at Carers UK

 

How Not To Parent.The Summer Holiday Edition.

Originally written for Firefly before the summer holiday.Do you know what?We survived!

 

This post was originally published on Firefly Community. Hop over there to see the original, and to read loads of other amazing blog posts.

Over the past eight years I have been taking part in a social experiment called the School Summer Holiday.

It appears to be a double blind trial, I have no idea of the results, the purpose of the study, or which group I’ve been assigned to.

Foolishly believing I had firsthand experience in this area, with two older children, I volunteered, only to find that nothing prepared me for the special needs version.

I do not appear to be able to ‘withdraw from the study at any time’ which I’m pretty sure breaks medical ethics, but I’m not clear who I can complain too.

I offer this then, dear reader, as a template of how not to plan for the summer holiday with an additional needs child.

Look at Instagram. Behold the beauteous horde, resplendent in their immaculate houses.

Marvel at the amazing places they take their children on a daily basis. No Lunchables or MackyDs for these families, even the chicken nuggets are home made.

Keep them at the front of your mind. This is what your holiday can look like.

Remember all the improving therapies you should be doing with your child. I’m not talking about the maintenance stretches, chest physio or medications you already do on a daily basis.

You have a 6 week period of ‘block therapy’ ahead of you.

I personally always start the holiday with two aims, firstly toilet training small person followed by teaching her how to talk.

Sometimes I write a structured plan to follow!

Remain positive at all times.

Remember the Daily Mail does not like Slummy Mummys. Who are these ogres, I hear you cry?

Why women who sometimes find parenting difficult and attempt to use humour, honesty and peer support to get through. Do not be like these women.

It is imperative that you glide swan like through the summer holiday, and that you push any feelings of sadness, worry or failure, deep, deep down, and hide them with a well-made up smile.

 

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I have followed these guidelines so you do not have to .You are most welcome.

I can tell you now that they are ill thought out, unsustainable and do nobody any good.

This holiday I aim to make sure we are all clean (enough) and fed.

I will smell my child’s head at least once a day. I will ensure the iPad is thoroughly charged.

We will meet up with some other parents who are in the same tribe and have a whinge, a laugh and some fun.

We will go outside and get fresh air, and also treat the Supermarket as an exciting place to visit.

I will not feel guilty that I hate swimming. I will lower my standards.

We will muddle through.

Oh. And I absolutely will not use this new list as a measure for success.

Good luck all .

See you on the other side…

 

 

If you find caring challenging check out the resources at Carers UK for support and community links.

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10 Things You Didn’t Know About Me.

 

I’m not sure this was exactly what Mum on a Mission had in mind when she set day 2 of #30daySEND bloggers challenge. I know she has an excellent campaigning blog in mind, but I’m feeling egocentric-so settle down, or switch off as the mood takes you. If you find you already did know them, consider yourself one of the inner circle. Welcome to my world.

1. I  judge people on coffee. I’m very polite, you’d never know. Instant coffee is NOT coffee. Similarly decaffienated-what’s that all about then?

2.  I love antique and vintage things. Before blogging I had a little Vintage business Pearlie Queen Collectables (that child gets everywhere) selling homewares and decorative glass and ceramics.(Oh and owls.That is a whole other story) My eldest used to help and we sold at fairs and markets always dressed up vintagely.

3.  I was a committed Christian. I think I still might be. Since Pearl, I have had a real struggle over faith, meaning and the purpose of life. It all appears to me to be very random, and some of the things said to me about healing, strength and being a special parent really haven’t helped. Still on a bit of a journey of discovery on this one. Suspect most of us are.

4. I worry. All the time

About money. We are in a very fortunate position, but are both employed by my husbands business. What if it fails?

About health. What if I die or become really ill? What if the Mister does? Who will care for a small special Pearl?

About the future, do I have the stamina to care in the long term?

About Pearl’s health, what if the epilepsy gets worse? What if her mobility deteriorates?

5. I can’t bear people making assumptions about me based on my appearance, gender,accent, politics or beliefs. I can become quite aggressive if I see someone doing this to someone else too. I try very hard to rein in my own assumptions when meeting others, and make every effort to notice those I do make. Unless I see someone drinking decaf   instant coffee, then all bets are off.

6. I have a tendency towarsds depression. It’s hideous when it’s here, but it is possible to live with it, and I have had plenty of practice. I believe in Citalopram, exercise and occasional hibernation.You absolutely do not have to be afraid of me because of this, I am a master of disguise, with a well chosen outfit, the right amount of slap, and an impressive smile you would be none the wiser.

7. I am a little bit obsessed with clothes. And styling. And design. And handbags. Oh and shoes. It’s getting worse as I get older. If I see a stylish soul out and about I compliment them. Complete strangers. Mainly people are delighted, except my teenage daughter, who if with me, is mortified especially when it’s her friends I’m complimenting.

8. I am tired and emotionally wrung out much of the time.

Tired of fighting the system for provision that is necessity not luxury.

Tired of wrangling a small girl who can’t bear the ordinary routine of dressing, tooth brushing, and washing.

Tired of the smell of nappies in the house.

Tired of handling people’s stares going out.

Tired most of all of being patient, understanding and reasonable. Surely  it is my turn to have a meltdown in public?

I am basically tired of being the grown up and would like someone else to take a shift.

 

9. I  love to laugh. Generally,despite everything  I find life to be lovely, people to be fabulous and nearly every situation potentially hilarious. Unless the black dog is visiting obviously and then-well more if that on a future blog.

10. I hate waste. Medicines that have not been opened or used have to be thrown away?Really? Splints that have been grown out of into landfill? In ‘Austerity Britain’? This does not sit well with me.

10.5 ( Oh go on, humour me) I think T.K.Maxx should be offered on prescription:

“take 2 hours browsing at least once a month. In  emergency cases of extreme fed-upness  enter immediately and do not leave without an unnecessary tea towel or mug.”

True Story.

I leave you with a picture of a Radley Handbag I bought from a charity shop, neatly encapsulating points seven and ten.

 

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You are most welcome.

 

Why not check out other fabulous SEND bloggers on Firefly Community? Join in, comment and take part!

SEND 30 Day Challenge. Day 1 : Meaning behind Blog Name

It finally happened. I realised I have a terrible addiction. My laptop has died and I feel like part of me has been removed.

Blogging for me is quite old school, I write long hand in a real book with real paper and pen. I settle down with my beautiful laptop and type and edit and fidget. I also do my paid work on it, and all our family admin too. I  am not very good at typing on the tiny screen of my phone.

Yet here I am. A SEND bloggers group I am part of is doing a 30 day blogging challenge, and I want in!

It will be short, it may be pointless, it absolutely will be typed very slowly with one finger and wearing my bifocals .

Why is the blog called The Wrong Kind Of Snow? If you’ve been a regular reader you will know.

I love names,and slogans and brands. I’d considered “Home thoughts from a Broad”(already taken unfortunately) I toyed with “Adventures in..” and having several blogs Adventures in Vintage/Antique/Parenting/Disability/Autism but realised that might be too ambitious.  As one of the big supermarkets recently started using this, I’m glad I ditched this although I did wonder if I’d missed my calling and should be working in marketing.

Reflecting on Pearl’s lack of diagnosis and the catch all term that is Global Developmental Delay I thought of explanations given by British Rail for journey disruption.I did consider “Leaves on the Line and other reasons for delay ‘ but it was overlong and didn’t stick.

One winter the rail companies exceeded themselves by blaming the wrong kind of snow on delays and disruptions.Perfect ! Snow  has a quality of stillness, nostalgia, longing and rarity that appealed. I wanted to capture some of these feelings in the blog.

The desperate excitement and longing to get out into the snow, quickly replaced by the desire to be anywhere else, once the reality sets in seemed particularly apt.

 

Thomas in Snow

 

Two months into the blog and nine and a half years into the life of a small person, a diagnosis arrived in the post.

 

“One Girl’s Journey with a Novo Mutation on GNAO1” ?!?

 

The Wrong Kind Of Snow it remains!

 

You can also follow me and lots of other SEND bloggers on  Firefly Community 

 

 

 

 

Giving Me The PIP. The Politics of Disability

Politics.It’s everywhere.You wait around for a General Election and then two come along in quick succession.

So how do you vote? Follow your family, stick with your tribe? is anything that goes on in Westminster relevant to the daily grind anyway?

Yesterday I was minding my own business, parenting and such like, when politics came up and slapped me hard across the face. I took my son to an assessment to see if he qualifies for PIP.

I’ll explain.Once there was a boy who was little eccentric and rather old fashioned. He muddled along with friends in the school system until Secondary School, or “living hell” as he preferred to call it. Becoming extremely angry with violent outbursts in school, he would tear his clothes swear at teachers and have to be physically restrained.My boy became suicidal, self harming and desperately,desperately sad. Eventually he was removed from school, provided with a tutor for 18 months, and placed in a Special School for children with autistic spectrum disorders.

The boy had secretly been harbouring Asperger’s, and his otherwise remarkable (and modest) mother simply hadn’t noticed it.

The care needs at the time, related to the Asperger’s and his depression,were significant. As a result we received Disability Living Allowance. This was easy to apply for (hollow laugh) and only required the filling in of a colossal form with appended information from all his healthcare team and his educational statement.

When politicians get a bit bored, they look around for something to fix.When they want to impress the voters, they like to show you they are saving you money

For this reason (Insert Fanfare) The PIP or Personal Independence Payment was born! See how it removes the word ‘disability’ from its title replacing it with the hipper “independence’. Marvel as all the disabled people who we all know are ruthlessly draining the countries finances (unlike for example, large coffee chains or internet delivery warehouses) are sorted into “properly disabled” and “scroungers”

Anybody needing assessment will now be assessed by form, frequently followed by a one to one assessment in person, carried out by ATOS. At 16 all current recipients of DLA are also reassessed.

I find myself then, far from home with a young adult on the autistic spectrum, who fears change, gets stressed about meeting new people and has significant sensory issues, related to noise,crowded areas and being assessed.

I have never been anywhere quite like this centre. It is large and clean, and that is truly the only positive thing I can give you.

The chairs are in rows in front of a screen displaying colourful, friendly logos about what the assessment will contain. Despite all this there is the same smell of fear and despair you find in a vets waiting room.

Periodically someone comes and calls out a name, very quietly from the back of the room. It is packed with people waiting with ‘companions’ and we wait for 45 minutes for our turn, at which point we are taken upstairs to a room. There is a stairlift, but we are told that we need to be able to get down the stairs independently in case of fire.

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Access wise so far then, we have the difficulty of getting there, the strain of hearing or understanding your name, and the inaccessibility of fire exits. Forgive me if that seems a little peculiar for a place likely to be assessing people with needs, but it is what it is.

Upstairs we meet a perfectly pleasant Health Professional. I do not know what her specialism is, but I suspect it has something to do with form filling and typing. In 45 minutes she questions Aspie boy who is by now, in an extremely agitated state, takes most questions literally and looks more distressed than I have seen him in some time. I have to discuss in front of my mentally fragile young person, the suicidal ideation he suffered, the lack of school support, the Psychiatric input, my locking away of knives and drugs. All this to a stranger we had just met. This does not appear to aid his mental state.

The assessor is supportive and impressed with how far he has come, but has no idea if he will be eligible, having to send the report to the DWP to use as an assessment tool. We have leave to appeal if it doesn’t go our way.

You may glean that I have some problems with this process, how astute of you!

I absolutely believe that governments should be held accountable for how tax payers money is spent. I do think we should minimise fraudulent claims, and encourage independence as far as possible.I suspect that there may be better ways of doing this.

For example, what if the DWP used medical information provided by medics who know the person well? How about school or Psychiatric reports? Does reinventing the wheel and adding another layer of assessment really save money? How much do the centres cost to run, clean, heat staff and light?Is this money offset against the colossal savings made by removing the fraudulent claimsters? Should centres be accessible? Do the Authorities realise that being disabled is not a choice? It does not discriminate. It could be YOU!

I found the whole situation shocking. It felt like a processing plant. It was dehumanising, to see people coming in with crutches and walking frames ready to be assessed to see if they really needed them. It infantilises people, and discredits the existing medical and social care professionals. It breeds the idea of disabled scroungers living off the stage in the public mind, and discourages inclusion as a result.

I want to believe this was not the intention of Government when it was introduced.I truly want to believe that everyone in our society is valued equally. I strongly advice you not to become sick or carelessly acquire a disability.

Please consider this when you vote, but most of all, please vote!

 

 

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.

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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.

 

 

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