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The Wrong Kind of Snow.

An introduction to the trials and tribulations of our family life, additional needs, and unnecessary film and poetry references.

Ten years ago, I was a parent of two children, both bright witty and engaging (obviously). A boy and a girl.

I was also a Professional, a Speech and Language Therapist, I liked Science, investigation and finding answers.

Oh I was a wife as well (still am in fact, apologies Mr Pearlie J)

A control freak,  sometime depressive, a Church goer and Christian. A book mad, self deprecating, film loving stereotype. Not very house proud (no change there).

Living in a house of loud opinionated people suited me pretty well, but one amongst us felt the family just wasn’t finished, and as we are both the youngest of three we set to, to complete it.

I’ve worked with various types of acquired and developmental disorders in my job. I never automatically assumed that our children would be perfect, but having produced two who seemed just fine, was fairly laid back about this one.

Besides special children did not happen to people like me. There were none in my circle of friends. When I did see parents of these children they seemed patient, able to cope, well organised. They’d probably chosen, or been chosen, for this path in some mystical way. Also there weren’t that many children like that out there.

Naivety has been an abiding part of my life,  a constant course of hilarity amongst my nearest and dearest. I am in fact the person who believed the word gullible had been taken out of the dictionary. I had given birth to a Pearl of a girl at home, with no pain relief (look on my deeds you mighty and despair). Perfect. I had well and truly nailed this parenting lark.

At this point I will introduce you to Pearl. In a family of leaders she is noisy, self assured and communicative. Oh and nonverbal. Did I mention nonverbal? She communicates by pointing, shouting “yeah” or shaking her head and by signing biscuit. Or cake. She shamelessly uses charm, persistence and leadership skills (not bullying obviously) to bend the world around her to her will. Pearl is 9, she dribbles profusely, has learning difficulties. is still in nappies, can’t dress or care for herself, and although she can walk has significant mobility issues and uses a wheelchair or K walker. She has changed everything.

Oh and somebody forgot to tell her she was disabled.

If you have a mind to,  stick around and I’ll tell you what we’ve learnt , how to succeed in parenting (hollow laugh) and how to remove chocolate from a wide variety of surfaces.

You’ll laugh. You’ll cry. You’ll hurl .No? Just me then.

Incidentally we have no diagnosis. Just the wrong kind of snow changing our travel plans.

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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Host.

In which we commune with nature and the life scientific.

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

This wildlife, however I feel more ambivalent about.

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

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

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

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

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

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

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

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

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

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

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

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

 

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In PODD We Trust.

In which Pearl discovers an effective way to assert herself, and considers a career in stand up.

Speech, in Pearl’s opinion is overrated , or perhaps in our house she’s just unable to get a word in edgeways.

Pearl has developmental verbal dyspraxia and it renders her non verbal.

She is extremely vocal, but in reality the 1-2 consonants and vowels she chucks around are only recognisable to her nearest and dearest.

Dyspraxia describes a difficulty coordinating voluntary movement, verbal dyspraxia relates to the muscles of speech and articulation.

Humour me for a minute. Say “buttercup, buttercup”as quickly as you can. Tricky isn’t it?  You are using the whole of your mouth from the tip to the base of your tongue, with a bit of lip action thrown in for good measure. Most of us do this merrily all day long with very little effort. Clever aren’t we?  Pearl just can’t. She has plenty to say, but lacks the articulatory dexterity to say it.

In order to get her own way Pearl shouts “ah ah ah” points, grabs us and takes to the object of desire. Nearly all children do this pre-verbally, in our house it’s been the background noise for the last 9 years.

Until now.

Gayle Porter, from Australia,developed the PODD system for children with cerebral palsy. It  is beginning to be widely used in this country. PODD counts as AAC (assistive and augmentative communication) and is low tech (it’s in a book-how very last season!)  It’s also becoming widely used on tablets.

So what does PODD mean and what does it do?  In our house it means a telephone directory sized book being thrown into your lap, followed by vigorous page turning and insistent pointing. It means during a phone conversation with my sister a child previously only able to say “eh” for yes and head shake for no, telling me to “hurry up” It means the TA at school being told in no uncertain terms to “be quiet” In essence it means communication, and proper, stroppy, nine year old communication at that.

Now for the science bit. PODD stands for Pragmatic Organisation,Dynamic Display  (no, me either and I’m a qualified Speech and Language Therapist).The child learns to use it as a communication partner, the adult uses it modelling visual language alongside verbal. I mean you point to a picture and say the word, the same as you may point to an object and say the word to your baby. It is supposed to be natural and instinctive.

In our reality we have a huge thick book.Each page is split into 12 pictures.Each picture links through an index to another page. Every PODD conversation starts with “I have more to say”  then through pointing and flicking the more, can be said.

A typical conversation in our house

“More to say” (turn page)

“It’s going to happen” (Still find that slightly sinister)  (turn page)

“go” (turn page).

“Trafford Centre”(turn page)

“People” (turn page)

“Mum” “Pearl” (turn page)

“Go” (turn page)

“Cafe Nero”(turn page)

“babycinno”

So basically a non verbal child has displayed her hand, and turns out to be a brand obsessed lady who lunches. Not sure I’m that surprised.

Joking apart it is a complete revelation, I’ve always known Pearl understands more than she says but really she understands far more than I realised. She can explain her mood, make food choices, boss us all around with decisions for days out, and join in with a lesson.

The latest and most glorious thing is using PODD for play. Quite quickly we developed a silly game. Pearl points to the weather page, I say “This is Mummy Scott’s weather channel and here is Pearl with the weather” Pearl points to a weather picture and then points outside, and cracks up laughing, because she never chooses the weather that is actually happening. It’s her first joke, and like all jokes was very funny the first time.

There is a side bar on PODD that has  “oops” to flag up making a mistake.Not for Pearl however, she fell over at school (a regular daily occurrence for a wobbly person) crawled over to PODD. Pointed at oops and fell about laughing, as did the rest of the class. There is a very real chance she’ll be the first PODD stand up.

Now  we have pretend play. Toys having a tea party will use PODD to talk to me. I must have modelled this once, now it is a regular occurrence and I love it-because it is a very normal developmental use of language.(Also Elsa doll told me she loved me).

An artificial and cumbersome communication book is leading to natural and enjoyable communication. I cannot begin to express the difference that this simple bit of “low tech” has made to our lives.

If you have a non verbal child,  PODD is worth a try, however, AAC is not an instant and easy fix to communication.

Does your child use you as a communication aid?  You spend a great deal of time with your small person, chances are you can interpret their body language, sounds and needs.It is easier and quicker for your child to allow you to anticipate needs. If you want to use AAC you need to grit your teeth and purposefully ignore some of these tells. It’s hard, but worth sticking with.

Is your school supportive?  To develop use of AAC, everybody needs to be on board and understand how to use the system and, most importantly, use it. Pearl’s school brought PODD to our attention, made the book up with our input, and use it daily. If it was just happening at home it would not be anything like as effective.

Are you prepared for people to stare at you in the street when you use the book? Oh sorry, you have a child with special needs, you are probably already all over this one. We have found Pearl’s book a talking point and helps make connections, she is an experienced food orderer with it, and it has met with lively curiosity from children her age too.

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I still wake regularly dreaming that Pearl has started to speak in sentences, but  PODD is a brilliant and viable alternative.She may yet develop some speech, or begin to use a more high tech aid, but in the meantime, the sound of laminated paper flicking over and the insistent jab of a finger on “Mum” “love you” will do just fine.

 

 

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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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Summertime sadness.

In which the summer seems never ending,a biddable girl shows her assertive side,and her mother fails to step up to the plate.

The six week holiday is over,  a collective sigh of relief can be heard from homes all over the country.

A summer holiday with Pearl is generally trying. We spend the first week being bad friends. Pearl expects me to provide  days full of excitement at least as interesting as school. I expect to be able to continue with work, tidying and writing in much the same way as I do in term time. We are both stubborn and unreasonable. Oh, that’s not quite all. Every holiday I have two noble aims. Firstly I will toilet train Pearl. Secondly I will teach her how to speak. Pearl has been in the school system since the age of three. Every single holiday since then I have had the same aims. I have clearly learnt nothing from this experience. Neither has Pearl.

This holiday has been particularly difficult. I ditched the goals in the first week (there was a lot of wee). In retrospect reducing my antidepressant dose was not well timed.We did however do some amazing things (In the Night Garden Live anyone? At least as enjoyable as Benedict Cumberbatch in Hamlet last summer. Truly) I however struggled.

I had plenty of Direct Payment money saved, for plenty of support from Pearl’s two awesome  Personal Assistants, but I struggled. I was tired, so tired. Nine and a half years of special needs tired. Mr Pearlie J and I went away together overnight, child free .Still I struggled. I just did not want to come back. Pearl went out with her PAs. I did not want her to come back.

For the first time in ages I lacked flexibility, I was tired, I hated myself, I hated my life and I struggled.

Pearl I suspect is prepubescent (Worms anyone? They’re tinned) I am well into an early menopause. This is a heady combination. Being Pearl, full of hormones, cognitively challenged, full of self esteem and non verbal, led to kicking, stamping,  shouting and biting. Independence fostered at her fantastic school resulted in tremendous attempts at achievement any time I left the room to do anything as ambitious as going for a quick wee.Things were spilt, fallen off, broken, and rooms generally trashed. I most fabulous and patient of women,  had none.

If you are possessed of an assertive young person of differing ability things cross your mind when meltdowns occur.

Is she autistic like her brother?  How do I  know?   Would knowing help?

Does she hate me?

Do I hate her?

When she is 46 will she still be doing this?

Is she in pain?

Is she regressing?

How will she cope with puberty when it properly arrives?

Will any of us survive until September?

My default response to these thoughts, which race harum scarum through my head at a mile a minute is a good healthy dose of denial. This holiday someone appears to have taken my denial, and its helpful assistant emotional resilience. I only hope  they had much joy with them.

Our holiday for me was characterised by  a beautiful picture of Pearl I shared on my Instagram page with the following post.

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“This is the proof of the lies that Instagram tells. A beautiful picture of a glorious child taken by her stylish mother. Pearl and I left the house early, dog in tow for a secret trip to Beadnell Bay. I’m such a great mum! Pearl wanted to walk from the car, despite not wearing AFOs (splints) just crocs. She feel over, screamed, I manhandled dog, buggy and screaming dervish onto beach where she continued to scream repeatedly. At this point I noticed that she had horrible dental caries on a back tooth she never lets me brush. Feeling super crap at parenting I encouraged her to play in this hole, she calmed down, I took this picture. This was followed by renewed screaming as the sand had got into the graze, which was much worse than I realised. Bundling dog, 3 wheeler and screaming childback into the car I winded myself on a kissing gate.

Tomorrow I am putting her in bed with Dad and an iPad, while I go out for a run. Alone.”

 

On the morning Pearl went back to school,my shoulders moved away from my ears a good five inches. I missed her. I loved the fact I missed her. All the guilt and anger and fear faded away. When I look back over the holiday I know I will remember the stand out parts, not just the stand out tantrums. I’m mindful of another special boy, who did not make it through the holiday, and hold my bossy, sassy, tiring girl a bit tighter.

I remind myself how far we have come. Pearl is learning. She has changed. We do love each other, oh how this child is loved! She will learn and grow and change again.She is just 9 and her body is getting used to growing into her future womanhood.

These tricky times will be got through. Like the endless holiday, this too will pass.

 

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