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”

 

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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.

 

 

 

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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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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 

 

 

 

 

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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