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!

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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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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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Note to Self.

Mornings. Generally I love them. I am the most irritating of people, a morning person.

Today however I  woke up to find depression attempting to sneak under the bedroom door and floor me before I even got started. I will be having words.

The rational, fabulous, experienced menopausal woman would like to address you, default teenager who has appeared unannounced, so sit down, shut up and listen!

You can do it!  Yes, you can write, pitch ideas, speak eloquently in public and (whisper it quietly) keep going with the novel. It’s possible you could make  fair fist of running the country given a chance, you certainly have enough opinions. You don’t however have to do it all today. Actually, just make a cup of tea and sit down. Worlds will still be there to be conquered tomorrow.

People like you. You have friends. Make time for them, they are an investment.These friends think well of you, remember you and even pray for you. If they speak about you behind your back it’s because they are concerned,or possibly because those shoes really don’t go with everything. You are actually quite likeable.

Medication. Not a sign of weakness. Yes I know you just watched the BBC programme about overprescribing but you have a sensible GP who knows you and your circumstances. Some people have not been so lucky. Some people don’t make it. Thank Science, God and Big Pharma for synthetic serotonin.

You cannot second guess what other people are thinking about you. Further, you can’t control it and it’s none of your damn business. Some people don’t like you. That’s OK. You do not  have to be universally liked. It’s life, not Miss Congeniality . What would Mrs Pankhurst say ?

Being the universal fixer is a thankless task. Think carefully before taking it on. Just because you can, doesn’t mean you should. Remember being Chair of Governors? Just that. The immigration crisis? Probably not your problem. Brexit? Definitely not your fault. That tax return however…

Other peoples success is not a reflection on you and your ability. It does not make you an abject failure. You think this is the case because today, and only today your self esteem has dried up. Oh and you’re British you have been bred to mistrust confidence and success. Just get over it already. “Rejoice with those that rejoiceth”

The drive to be internationally recognised? May be this is slightly irrational?  Ambition is good, but  not be completely beneficial in this case.The sad truth is you will die one day. People tend to. Enjoy now. Go to galleries and auctions. Read about ceramics. Argue about politics. Run in the fields. Squeeze your children. Make improper suggestions to your husband. Smell everything especially the coffee. This is it. Now. Just this.

Laugh, laugh and laugh again. Watch a comedy a day. Meet up with people who get you. Drink coffee, eat cake and laugh some more. Try to meet up at least once a year with the geographically distant friends who make you laugh so much wine comes out of your nose. Embarrass your teenagers by mispronouncing pinterest, loudly,in public. Swear randomly at your husband, to shock him. Tickle your smallest child until she can’t breathe and then roll around on the floor laughing with her.

Truly some days will be hideous and some glorious. This sadly is the human condition, and no amount of railing  at the sky is going to change it. Roll with the punches and don’t beat yourself (or anyone else) up when you’re just not feeling it. As Mrs O’Hara said “tomorrow is another day” and you have to believe a woman who looks good in vintage curtains.

 

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Take your own advice. Take care of you. Be kind to yourself. How many people have you said that to this week? Wise words for any day of the week. Listen to them, feel them and breathe them in. You are not immune from this advice-in fact you have followed it in the past and it has worked. Remember?

Give yourself a good hard shake. Put the kettle on. Grab a book and put your feet up.

Normal service resumes after the break.

 

 

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