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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Oh, The Places You’ll Go.

In which a change is as good as a rest.

Going on holiday with my gang of miscreants is not an easy task. A friend of mine with small children describes her holiday experiences as “same sh** different location”In an effort to avoid this we have tried a number of things.

Air travel is currently out.Father of Pearl is properly afraid of flying.Valium helps.
Pearl doesn’t do queuing and waiting, the idea of wrangling her and a 6′ 4” gibbering drugged up wreck through an airport and onto a plane is less than appealing. The Glory flies off to extraordinary places with Guiding.The Gambia and Copenhagen have both been on the list-I’m hoping if I stay on her good side we can go away together in the future.

Rab shows a typical, non typical, resistance to change.He can do holidays if he knows where we are going, how long the journey will take,what time we’ll leave, when we’ll arrive  what his room will be like and a rough itinary of the break.He doesn’t like them and is usually desperate to get home.Both teens (and F o P) NEED wi fi.Obvs. I’m a dinosaur and just need lots of books.

We also require flat access, downstairs bedroom for Pearl if at all possible and a flat outside space.

This leaves us with the following options.

Stay at home. Forever. No surprises. No changes of routine, and the real possibility of infanticide.

Choose the same, or similar places. And this brings us to the reason for this blog,a short, non sponsored paen to the place that everyone in the family loves and a big thank you to those who work there.

We have just come back from Center Parcs. We love the place. It is not a cheap holiday alternative, but what it offers us is perfect for everyone.For reasons I cannot begin to explain(and nor can he) Rab loves it.It’s familiar, the villas are the same. We did, it’s true, have a slight wobble, when he realised this time our villa was “the wrong way round”but as he’s 16 and was aware it was the autism speaking he bravely overcame having the living area the wrong side of the kitchen.

In the car on the way to Sherwood Forest the 18 and 16 year olds regressed to being about 10,hitting each other shrieking and laughing, they say this was to amuse Pearl, (it did) but it’s actually the effect of going to Center Parcs that causes it.

If you have never experienced this place I’ll explain. It is a large,managaged forest.There is a variety of accommodation, close together, but orientated so that you have clear views of your surroundings and aren’t at all overlooked.There is an amazing huge swimming pool, sorry, “Sub tropical Swimming Paradise”, with flumes, wave machines shallow pools, this is all included in your stay. There are a massive amount of bookable activities that you pay extra for and can take or leave at your leisure. In the past we have done aerial wires, roller blading,flown hawks, watched owls, a nature walk, scuba dived, Bollywood danced, tried archery,hired bikes and played badminton.

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Years ago on a previous stay,The Glory learnt to ride without stabilisers there for the first time. That’s the other thing, when you have unpacked your car, all cars return to the car park and the site is vehicle free.It is possible to be mown down by a middle aged person unused to cycling, but on the whole it’s safe and easy to navigate,and fairly flat so Pearl can walk a bit.

This last weekend came with an ensuite swan.On opening the blinds in the morning he knocked incessantly on the window in the hope of food.I’d like to say that the teens didn’t give him my cereal, but I’m not entirely sure.This,and the gaggle of geese who appeared plus the squirrels, rabbits and moorhens made me feel like Snow White without the dwarves.Pearl was utterly enchanted and ready to feed them Doritos (she doesn’t like them) but was restrained.

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All human life can be seen at the pool, all ages, sizes,races and abilities.This makes holidaying with someone small and special easier, as you are absolutely not the only one.There are decent changing facilities with benches, and when the small person with you resists getting out of the pool and changing ,while screaming blue murder, you are sympathised with, and nobody calls Social Services, which is a bonus.

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“If I just climb into the wheelchair maybe they’ll take the hint and take me swimming?”

The staff really seem to enjoy their jobs, and most waiting on staff gamely took Pearl’s orders made with the help of her PODD book and came when she looked over her shoulder and shouted “haro”while jabbing at the food and drink page.

There are a handful of fully accessible villas, with wet rooms and hoists.We don’t presently need this, and knowing all the other villas were one storey, did book  a villa two stays ago, only to find it was up a steep flight of steps.Within 20 minutes we’d been reallocated something more appropriate.The moral is, an organised parent phones to book and mentions needs rather than doing it online. (I’m sure you all would have done that anyway).

This stay Pearl managed more in the way of walking and of climbing on soft play. We also allowed her an ill advised go on a steep slide in the pool-I went down to the landing area to fish her out, only to realise there were almost vertical steps to get out of the water. We did it once more (she loved the slide) before finally admitting defeat.

However the best thing by far was the World of Spa. Having taken advantage of the fact that Pearl was shattered by all the activity and can’t tell the time, we put her to bed at 5.30 (yes we did pay for it with an early morning) left the 18 year old in charge and floated, bubbled, steamed and relaxed our way around the spa for two and a half hours.It was awesome and I was so relaxed I went to bed as soon as we got back at 9.Which was just as well when Pearl woke up full of beans at 3.Maybe she can tell the time after all?

So Center Parcs,I know you are a large organisation, and our family are only a tiny handful of your yearly visitors, but a HUGE thank you from us for being, inclusive, fun, friendly and good at what you do.

Have you and your family enjoyed and inclusive accessible holiday with great service? We’d love to hear about it in the comments.

*STOP PRESS* We have been nominated for an award! The BAPs awards is a new award for bloggers writing about additional needs parenting.The Wrong Kind of Snow is a finalist in the Promoting Positive Perceptions category.You can vote here,  and do take a look at all the other awesome finalists too! Thank you.

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Zen and the Art of Extreme Parenting.

In which I wake up crying, and try to put it into words.

As you have been graciously following the inane ramblings of a parent carer, I thought you may like to join me on the next stage – how to stay calm while dealing with extreme  pressure to parent fully and effectively.

I have recently become interested in extreme sports and have been considering amazing feats of daring-do and endurance. Maybe this is an age thing (46 as our local paper was keen to pointlessly share) or maybe it’s a growing awareness that life is short.

I suspect it is more to do with the fact that jumping off the side of a bridge attached to an elastic seems a great deal easier than parenting my three children.

Before I start, can I just say that parenting is difficult. All parenting is difficult. Childcare is difficult. It can be tricky, keeping small people safe let alone moulding them into useful and delightful members of society. It can be boring. Anybody who has watched  a friend who is a party loving wild child turn into an exhausted zombie, unable to stay awake after 7.30pm, will know what a baby can do to a person.

My personal view is that if you get to the end of a day, haven’t killed,maimed or lost anyone and  you’ve all been fed, you are a successful parent. If the house is clean and tidy that’s a bonus. If you have completed an improving craft activity with child/children you deserve a medal. If you have managed to arrange some lemons in a ceramic dish, photograph it and put it on Instagram, you probably need professional help.

Let me tell you what parenting in extremis looks like. In my case, qualifying as an extreme parent, includes a preexisting tendency to depression, which is largely managed with careful monitoring. Add a lack of sleep, and constant physical exertion, so that you no longer have the mental resources to carry that monitoring out.

You will be responsible for a small non verbal person, with physical and some health and behavioural issues. (Let’s call her Pearl) She will be prepubescent and in thrall to hormones that she cannot understand or explain. As well as this you will have a filing cabinet (or two) of information on her to keep up to date and in order. Somehow you will also have the role of coordinating all her care, and communicating across disciplines.You may have a Family Support Worker who has roles that don’t appear to match her title, and both she and you are not certain of what they are. Social care ‘support’ will make you want to cry. You will have to travel across counties and sometimes at short notice to a vast array of appointments. You will absolutely not be able to keep up your professional role, and end up doing your husbands admin with a very bad grace.

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You will also be responsible for a 15 year old male of the species. He will cleverly have been harbouring Asperger’s Syndrome until the age of 11. There will have been many signs of this scattered liberally through his life, but as you are busy  extreme parenting the small person, you haven’t noticed. You will continue not noticing until he becomes suicidal at the age of 11, and is advised to leave school at the age of thirteen. You will be expected to deal with having a very sad stressed person at home for 18 months while receiving minimal support. You will lock up all the knives and medication,and live in a state of hypervigilism, realising that the one thing you want for your children, that they would be happy, is not under your control. You,my friend will have to deal with an extraordinarily unhelpful and overstretched CAMHS department, find a new school and ask for  one of the first EHC in the LA (and country). You will learn about autism, watch him become well adjusted and in tune with himself, and try to hold your nerve while he wants to move back into the very mainstream setting which caused him pain, for his A levels.

You now have to guide an 18 year old female, who has taken it upon herself to be The Glory of the clan, through extreme social anxiety, watch as she refuses all help and begins to spiral downwards into depression. At this stage base jumping looks like a walk in the park. Offering support while also giving her room to make her own choices, pushing her academically while recognising that her mental health being stable is so much more important, will be the most difficult balancing act you have embarked on. Her school will be limited in the support it can offer, counselling will be in short supply and variable, and CAMHS, well you have seen the help they offer already.

When you wake up in the morning wanting to cry, out of touch with your own needs and feeling that you, and you alone have caused this myriad of difficulties take heart. In your dreams you may have been a more, Little House on the Prairie type parent. Remember Laura Ingalls running through a sunny field? Do you also remember the lack of running water, decent sanitation and washing machine?

I see you, fellow extreme parents. I see you and weep for you, for your situation, and for the poor and patchy support you are receiving in your taxing, thankless dirty, painful jobs. I have had coffee with some of you, and railed against the system and your situations. I have lost sleep over a country that prioritises academic achievement over the good mental health of its children, and who makes accessing support so difficult that some of you just give up asking.

An older woman of my aquaintance told me that love covers everything, and smooths out any parenting mistakes you may make. I hope she’s right.

So, if you like me have accidentally become an extreme parent what do you do? I expect you are waiting for the Zen moment? I’ll let you know.In the meantime I’ll try to practice Pearlfulness TM and be grateful for Gilmour Girls on Netflix.

 

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If like me you are struggling with extreme parenting take a look at this graphic from Carer’s UK.

 

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.

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Pimp your hot chocolate with popcorn.

 

 

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.

Spectrum Sunday

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*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.

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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.

 

 

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A Hymn to Him

An unapologetic love letter to my Dad.

I don’t know why you have been on my mind so much lately, it’s twelve and a half years since you died. Perhaps it is watching your  small wobbly granddaughter achieving her small significant steps, and hurting that you never met her or knew of our struggles.This morning I saw a bright, quick, robin with worm in beak.I stopped and we made eye contact.I smiled quietly. Somewhere I heard an old story that robins were spirits of loved ones popping back to check up on us. Oh I think this is nonsense, but just like children want to believe in Father Christmas I want to believe in this.

A huge rush of memories was undammed by this bright eyed creature, smells, sounds, questions unanswered.So many stories trail behind all of us and you were quite secretive about yours.

In white working class Essex, I did not know anyone else whose Dad had been brought up in India, with servants and in what looked like a stately home.Your Great Grandmother was half Goan.With  Anglo Indian heritage in what was then Bombay your family did not really fit. Too English to be Indian, and too Indian to be English. How was it for you I wonder? I know you had an Ayah, and that she was too young for the job and gave you Opium to keep you quiet.I’m told this affected your lung development and led to the chronic problems with breathing you suffered from throughout your life.I know you loved your Cook and spoke Hindi to him because you told me suddenly in a rush of memories as we were washing up one day. He cried when you left for England. I expect you did too. You told  too about the riots during Independence, and the servants coming to find you in a shop and hiding you in the back until the trouble had passed. This memory when voiced was so precious, so rarely heard that I did not push you for more information and now it is too late.

The Hounslow girl who you met at a dance and later married, tells me that your mother was ill prepared for life in a London semi, terribly untidy and that your untidiness was due to servants picking up after you. Who would have thought that a Council House girl and a diffident chap from Bombay would have so much in common? She thought you looked like Clark Gable, she reminded you of Ingrid Bergman.I’m so glad you met, and that the Doctor who told Mum that with your chronic emphysema you wouldn’t make 40 was wrong.I  have a particular interest in that part of the story as I was the “autumn blessing”when you’d already got well past the babyhood of the one of each who were already there.

I know I get my work ethic, drive and ambition from you.You also passed on a strong faith in God and politics. People  found you gruff, and plain speaking to the point of offence at times. Your views were very black and white, there really was no grey. As I hit my teens this was the cause of huge arguments, theological and political. You had been in and out of hospital and had near misses so many times that I was always concerned that I would be the one to trigger, through stress, the final asthma attack. I think we both knew you were too stubborn for that.

Your best beloved told me not to come home if you died while I was away doing my degree, she would manage just fine, but no you carried right on on your one functioning lung, moved to a new area, made new friends created a new and beautiful garden, gave me away on my wedding day. I remember  (I seem to have something in my eye as I type) the speech.You couldn’t believe in arranged marriage you said, as you could never have chosen anyone as perfect for your beloved daughter.(You were right)

You haven’t seen them growing up, my children, the eldest receiving university offers. You stood up and cheered at the Free Trade Hall in Manchester as I walked across the stage to receive my degree, the first in our family to do so. When I think of you I am still trying to make you proud, but I know you were proud of us all, Big Girl , My Son and Girlie .No one calls me Girlie now.

You would have been proud and worried about my boy, who has struggled with depression and life. When he was diagnosed with Aspergers I was adamant. “He’s not on the spectrum he is just like his Grandad” Oh Dad I think he really is and that you would have been a prime candidate for late diagnosis.

As for the Pearlie Girlie, no one could fail to love her, I’m so sorry you didn’t get to meet.

Dad you would have been particularly proud of mum. She cared for you so beautifully at the end, after a lifetime of caring. She was determined to keep you at home with the hospital bed in the living room and very little extra help. Driving that road and not knowing whether you would be there when I arrived, in and out of hospital again, but you stubbornly clung onto life. I will never forget the phone call “the terrible day has come” and there you were looking so young and peaceful in the living room while we just had a cup of tea.

She has gone on that girl of yours to carve out a life in her community, move house to be nearer us, and start all over again. I see her getting on, but missing you.She still says “we think” as if you have discussed it. I suspect you probably have.

More than anything, the thing that hits me right here is a cuddle from your best beloved and the phrase “your Dad would be so proud of you all”

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These boots.

In which my belief that the right footwear is the answer to everything is challenged.

Previously gentle reader, you left us on the wrong side of a two way mirror, enjoying all the benefits of early intervention.

All parents of  children with additional needs will know about time management. As well as the Child Development centre, we were fielding dozens of other appointments, sometimes on the same week, by a range of services, apparently unable to communicate with each other. Over and over again, the exact same questions. Not irritating at all. As I wanted to help the youngest, and as I had been The Professional on the other side of the clip board just a few months previously, I complied with all of them.

Have you ever read The Special Parents Handbook? Go and buy a copy now. Yvonne Newbold points out that the people sending the appointment are Public Servants. We are the public. They work for us. We can choose which appointments are beneficial, change times and ensure we don’t become overwhelmed.(Two appointments in one week may be doable, two in one day. No. Just no).

The latest appointment involved feet.I love boots and am a firm believer that with the right footwear anything is possible.The Physiotherapist must have been of the same mind as she gave Pearl a pair of the sweetest little white boots with pink laces. (A school mum thought they were designer) They were Piedro boots, and as well as being cute enabled Pearl to pull herself to standing. The appointment,and the department that gave us these beauties, has proved to be the bane of my life.

It started well. A fabulous, kind and experienced man, who turned out to be an Orthotist measured Pearl, looked at her gait, and discussed planning forward with her Physio. The boots arrived. They worked. In my mind now, Orthotics was a department that believed in multidisciplinary working, was patient centred and provided killer footwear. How little I knew.

At this point, as I have found so often,there was very little explanation of the service,what it was for and what else it provided. Every eight weeks or so, we were called in, measured, and new shoes were ordered. They were different colours! They were cute! We had choice! I loved it.

Half a dozen pairs of shoes in, Orthotist and Physio exchanged glances and said Pearl would benefit from  splints. For some reason, I assumed these would give extra support, help Pearl learn to walk and then be discarded. Taking Forrest Gump as my reference (Run Pearlie, run ) I imagined one day soon she’d walk out of them and into pair of ordinary shoes. (Insert hollow laugh here)

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For the uninitiated here follows a description of fitting a child with Learning Difficulties for AFOs (splints).

Mother enters Stage Left with child in buggy. Child is interested and curious, she knows the staff and the room has toys in. She wants to crawl around and explore. A new Physio enters Stage Right. The Orthotist bends the child’s wonky foot into a right angle with her ankle. The child is not keen on this turn of events.The new Physio waves toys and books in front of child. The child is unimpressed, but happier when the Orthotist releases her foot. Unfortunately he then returns with a metal bar and wet bandages for casting. Holding her foot at the correct angle, he skilfully wraps her foot below the knee.Mother is fascinated, child less so. As the plaster sets she begins to scream,the Physio waves a book,Mother sings  Twinkle twinkle little star (!?!) with a rising tone of panic. Orthotist cuts off  set cast (more screaming, more singing) and releases the little foot.Child is now crying real fat tears, and buggy, child and mother are covered in Plaster of Paris,as is most of the room.

I would love to say that being cast for splints gets easier with familiarity. I would love to say that.

Let’s go back to the first splint experience. Following Pearl shedding enough tears to wash the Plaster right back to Paris, we got to choose a pattern for the splints.This was more like it.  Design is much more my kind of thing.

Two weeks later we return.The lovely, experienced Orthotist is poorly and someone is covering.This someone doesn’t like me and has decided  I am a flippant idiot. He is very serious. I am very nervous. He shows me how to put on the splint, and tells me to try. I am shaking slightly. He raises his voice.

“No, no,no not like that”

I am a Professional woman, a mother of three in her late thirties. I am not used to being told off like a naughty child.It makes me shake more. I can’t get the damn thing on her foot. Once it is on and I have been suitably humiliated, I am told that I will have to go and buy shoes to go over the splint. Pearl only has one splint,but she can’t weight bear in it without shoes.

I enter Clarks (other shoe shops are available) I am by now in a bit of a state.I take my ticket and wait my turn.The assistant comes to measure Pearl. I explain.The woman looks at Pearl, and  is afraid. She a grown woman is afraid of my non toddling, toddler and her splint.

“I think you will have to make an appointment and come back”

Suddenly shaken back by her reaction into a state of near aggressive assertiveness, I refind my voice .

“Look I am finding this very difficult and I am very upset.She needs shoes, you fit shoes and we will work out together how to do this.The clinic is local and she is not going to be the only child who comes in here needing splints”

Wisely the woman gets a general grip and helps. We have to buy two pairs of shoes-TWO PAIRS, because now Pearl has two different sized feet.It’s alright according to the shop,as they will give us a discount which means that the pair will ONLY come to £50.

So my lovelies what can we learn from this experience?

Mothers and Others

Carry tissues.

Wear waterproof mascara.

 Professionals

Support parents when medical equipment that visibly separates their child from their cohort is required. It may be clever scientifically, it may be part of your working life, but the fact it has a pretty pattern on it does not make it easier.

Start working on training local shoe fitters.

Advise parents on the right style of shoe to go over splints.

Tell them the why.“We are fitting splints in order to enable her to have a straight foot and a flat base for standing.They are also needed to ensure her foot does not become twisted as it grows and to encourage a good muscle stretch”

Tell them the when.”she will need refitting as she grows and may need to wear them for extra support all her adult life, we will keep reviewing and keep you informed”

Tell them the how.”When she needs new splints speak to her physio”or “we will review in 8 weeks”or “here is our number phone when she needs an appointment”

Keep your interpersonal skills honed.

Oh (and a personal bugbear) link up with a medical charity working in developing countries so that splints,shoes and gaiters that are often barely worn can be reused and not go to landfill.

Thank you.

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