Here Comes That Sinking Feeling.

In which I make a clunky link between learning a new sport and parenting a child with additional needs.

I’ve never done drugs. I’ve never smoked a cigarette.

I am, Dear Reader, an Osmond without the teeth and the Mormonism.

I have therefore to choose my highs naturally, and the latest, most modish high is open water swimming.

This is an extremely predictable middle aged women’s pursuit apparently, along with triathlons and getting tattoos to remind you that you are in fact yourself-and not the mother of three complicated individuals who are apparently unable to load a dishwasher, despite being eminently capable of unloading the fridge..

in this spirit you join me about to pack my bag to swim, in a lake under instruction.

I am a rubbish swimmer.

I hate taking children swimming.

I can’t do the sedate and sustainable breast stroke.

Instead I was taught a showy splashy front crawl, which is exhausting and doesn’t coordinate well with my breathing.

Fortunate enough to live bordering the Peak District I have hills surrounding me that are fabulous for running in and bird spotting.

Nearby is a particularly beautiful stream, ending in three waterfalls which people love to swim in. I’d never been despite living 20 minutes drive away for the last 25 years, didn’t even know how to find it.

Six weeks ago on a freezing May Day (oh how I love this country!) in the rain, with 3 people I’ve never met, I swam in it!. It was amazing.

A codicil. Getting out I experienced a continuing drop in body temperature, like a pre hypothermia, that effected my cognition, movement and vision.It was bizarre and unpleasant, and is the reason that if you decide to do this for the first time you do it with someone experienced,who explains that it might happen, tells you what to do if it does and watches you like a hawk to make sure you are OK. (Basically my body wanted to lie down and sleep, but I knew I had to keep warm and keep moving and it would pass) People die in open water, and it is much colder than you or your limbic system is expecting.

Anyway I want more, but I need to improve my swimming and I need to be with someone in case my brain plays hypothermic tricks on me again.

I leave in an hour with everything packed in a ruck sack, and am excited and trepidatious.

14 years ago my body did something extraordinary and heaved out a remarkable individual with no pain relief. (Yes I have mentioned it before and no I won’t stop banging on about it because I am actually a Goddess)

I had experience of birthing and parenting twice, and was well aware that it could be difficult, painful and unexpected, but oh the highs….definitely worth it?

Apparently when faced with uncertainty, disability, and unusual development of a child, coupled with complete lack of diagnosis – a parents body can do strange and unusual things.

Denial is one, fierce overprotectiveness another. Anxiety, depression and an inability to do tasks that were previously achievable all present.

A reasonable reaction at this time may be to lie down and sleep, forever.

I’m afraid sleep is for losers, or people that don’t have to wake up repeatedly in the night to change a teenagers pad/resuscitate a toddler/unblock a PEG feed(delete as appropriate )

If you are new to this extreme parenting I just want to come along side you and say, this reaction is normal.It doesn’t make you a bad parent.It doesn’t make you ableist.It is a reflex your system has that can’t be explained, strikes each of us to a different degree and is not entirely unpredictable..

There is a trick to working through this.

Keep moving.

Keep warm.

Keep someone close by to keep an eye on you.

Make sure you have plenty of coffee and something sweet.

Persisting through this difficult time will bring its own rewards, and teach you about yourself your strengths and weaknesses (believe me you will have both)

It might not be easy. It won’t always be fun, but then training isn’t supposed to be. It’s supposed to be training.

Dear fellow parentsI am in no way minimising the grief, confusion and sheer exhaustion an unexpected Pearl in the bagging area can bring.

But know this. It is possible to survive these early feelings of disorientation.

It is possible to thrive in a harsh environment.

It is possible to be utterly giddy with joy at your achievements. Not always, because come on people this is after all real life,not just a tenuous analogy about sport, but often.

Ease yourself in. Check your breathing.Persist with caution, but nevertheless persist.

You my darling have absolutely got this.

With thanks to Suzie at Peak Swims, currently rebuilding my swimming technique ! (News just in I didn’t drown or get hypothermia but I did work hard and had a massive giggle too!)Check out her page here

Strange Days

Sometimes days are too much.When escaping and hiding under a blanket can be classed as self care.

This blog originally appeared on firefly.

It’s one of those mornings.

I wake at 5am to hear a determined 13-year-old trying to exit her room by squeezing herself under the stairgate at her door. It doesn’t work as she is blessed with the booty of her mother’s mothers, so she gets stuck and shouts.

I left the marital bed at 1am for the spare room as the snoring had become deafening so I figure it’s not my problem.

Shaken out of sleep I realize I am a terrible mother and wife, and so am wide awake, while the escapee and snorer have both managed to fall back to sleep.

Just for fun I run a few of my favourite, back stories in my head. I am the star of these glorious productions, and while I consider myself, failing in a myriad of ways I make absolutely no concessions for my age, tiredness or general humanness in the tale. Each failure is utterly my fault and could only be resolved if I was an all-round better person.

I’m not.

Thirteen years of caring hit me like a brick on the forehead.

I was going to write about self-care this morning.

How important it was to eat the rainbow, do the things you love, exercise religiously and surround yourself with sunlight.

47483_157852777564008_6821741_n — Exercise religiously and with Pearllike determination

Instead I offer you this.

On the mornings you wake up imagining that the teachers at school talk about you behind your back because you lost your child’s reading books again, these same books that your child only manages to listen to the first word of (This you understand ,not because she has huge cognitive challenges, but because you have not used your professional skills to gradually increase her attention span, but have let her watch The Wiggles on her iPad)

On these mornings forget the Instagrammable meals and to do list.

Get your child out of the house onto transport as soon as possible-stay in your pyjamas, cleverly disguised as exercise wear. In fact, if you like put your running tights on so you look like you’re just about to go out-they are as comfortable as pyjamas anyway.

Shut the front door. Turn off the phone. Find a carb if your liking and consume it with a cup of coffee.

Grab a cat if you have one. Put it on your chest and lean into the purr. This is an animal that knows the importance of rest. Let it be your teacher.

oHclvn6tQymHjTSu1leDnA — New mindfulness delivery from Prime

Turn on the tv (books are available but at the bottom of this well of tiredness who even has the concentration?) and watch anything you like without fear of judgment.

At some point you may have to get up to boil a kettle or eat something. Do not be drawn into a chore. Resume the position you only have a few hours before the school taxi returns.

Rest is important, vital for recovery and progress. It is not an indulgence it is a requirement. Nobody will die if you don’t put a wash on. There is absolutely another day tomorrow.

There are other days when getting up and setting yourself a task like getting dressed is the way forward. (if all you tomorrows are like today and getting off the sofa becomes an impossibility then another level of self-care needs to kick in involving a GP and extra help.)

Nobody told me there’d be days like these. They don’t tend to be ‘grammable.

Strange days indeed.

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Power to the People!

I have a bucket load of experience in hospitals, many of us do. I love the NHS, but it can be easy to feel disempowered and remember what to say in appointments.

Top tips from me, top tee from Mutha.Hood.Originally posted on firefly

A close relative who is also an Occupational Therapist has recently found herself on the Special Needs journey. She works in hospitals four days a week. People consult her for advice and opinions.

On her other days in hospitals for appointments, with her Mum hat on, she has noticed something strange.

Her opinions are an afterthought.

“We’ll do this and this and this. Alright Mum?”

Opinions and appointments are offered as a foregone conclusion.

If she knows an investigation is available or helpful, she has to repeat herself.

Again. AND again. She has to employ more assertiveness and determination her mum role than she does in her professional one. There is an imbalance of power.

I am not offering this as an example of how bad professional are. She is one, I was one.

Only a generation ago Doctors and Health Care Workers weren’t

required to work collaboratively, they were Consultants, the ones with the answers.

Naturally good doctors always have been great communicators, but if they weren’t it was rarely questioned. You had less choice in who you saw, and knowing a Medics first name, much less using it was a very rare thing. This is the medical model-you see a medic they fix you.

Things have changed a great deal, and some have stayed the same

The Medical Model continues to haunt the NHS-and let’s be honest as users it is what we would really like. Imagine if I took my nonverbal girlie to the Paediatrician and she was given a pill and came out talking!
In the beginning of the Special Needs journey this is what most of us want and expect.

There must be an answer, mustn’t there?

So, the imbalance of power is partly historical, partly to do with a Western idea of medicine, and partly handed to the professional by us. (Think “my child is broken please fix it”)

There is are other reasons though that we find ourselves disempowered as parents.

One is very simple. We are in crisis. A situation has occurred that we have not encountered, most of our friends and family haven’t experienced and we are not taught about at antenatal. We have a child who is different, and we don’t know what it means, for us for them or for the future.

When I was working as a Speech and Language Therapist, I had loads of experience of Speech and Language problems. None of this experience was personal.

I had met and become close to lots of clients with language issues, but I had not lived with them.

The Hospital I worked in was my place of work-for the community it was a place of crisis.

Friends and relatives had experienced the worst moments of their lives there, and some had lost their nearest and dearest.

My friends worked there with me, shared coffees and lunches. The work was emotionally taxing (health professionals are generally an empathetic bunch who experience some degree of vocational calling) BUT at the end of the day I went home.

I offer this as an explanation not as a solution.

Professionals can become excited by new therapeutic solutions that won’t work for you, for your child or family-so how can you come to hospital meetings and not be overwhelmed or feel confused or railroaded into plans you are not happy with?

Feeling emotional, confused and vulnerable is normal. You are in an unusual situation. In the early days try not to go to appointments alone. If you don’t have friends or family able to come, local parent support groups should be able to offer you an advocate. This is great as along with having another person on your side of the table they can debrief you afterwards.it is entirely possible to go in to an appointment and feel you’ve understood everything only to immediately forget it all.

Trust me I’ve done it!

Think of what you want of the appointment. Write it down before you go in and try to get your questions answered.

If somebody says something you don’t understand ask. You are not being stupid; they may be using language they take for granted in work life that normal mortals just don’t speak.

Try to summarize what has been said in the meeting to check you both understand

“So, you’ll make an appointment and I’ll get it in the post?”

You may not get on with every Professional you meet. That is OK they are not your friends. If, however you think they are not working in your best interest, despise you or seeing them makes you feel physically sick you should probably talk to someone, because that is NOT alright.

Finally treat yourself! If the idea of appointments and the amount of emotional strength you need to get through them makes you anxious try to trick yourself with the promise of coffee cake or McDonalds on the way home. It works for my 13-year-old, and frankly me too!

The dream is meeting Professionals who you get to know, form a good working relationship with and who you look forward to seeing. It will happen and when it does, when they understand you and your child that is momentous. Cherish those people and reward them with chocolate if necessary, they are worth it!

Goodbye to All That..

This post originally appeared on Firefly at the beginning of the new school term.

Hello and congratulations!

Made it through the school holiday?

Feeling smug?

Or, like me utterly exhausted and considering out sourcing your parenting to someone more qualified and altogether calmer?

Is the undoubted joy of handing your child over to someone else, tempered by fear of the consequences?

Then you are probably the parent of a child with additional needs.

Perhaps you love someone spectrumy who is managing in mainstream, but struggles with change and has to enter a new class, with a new time table, and new teachers?

Maybe your small significant other has complex needs and you have to trust someone to keep them safe, well, clean and alive, along with the curriculum?

Do you love someone moving from Mainstream into Special Education, and fear that there will be associated stigma?

Or is your small special person moving into Mainstream?

How do you balance the relief at having time to go to the toilet alone, with the concern that someone else who doesn’t have a parent’s eye is caring for them?

How do you relinquish control?

Pearl is now 11 and has left her beloved Primary School and is heading off somewhere new.

To be honest Pearl, although apprehensive, is excited and looking forward to making friends.

I do however, expect an increase in challenging behaviour and mood swings over the next fortnight.

And Pearl may have some too!

There is always a wistfulness to this time of year.

Taking the dogs out early this morning mist hung in tunnels over the fields.

The blackberries are going over (they have, “the devil’s claw”, an old term I particularly like for the fusty, past their best ones).

There is a feeling of change in the air.

Change of weather, change of season.

Shortening days and cooler nights.

I have been involved in the education system for 45 years, pupil, student, school therapist and mother.

Autumn is intertwined so tightly with the new school year it’s impossible for me to extricate my emotions from the season.

Tomorrow when Pearl puts on her new uniform and gets on a new taxi, to go to a new school I will be tense.

Will they understand her?

Will she fit in?

Will they see how wonderful she is?

Did we choose the right school?

I know I’m not alone.

From experience, I know this season will be replaced by the next, routines will be reestablished, and life will go on.

So fellow travellers, let them leave, take a deep breath, put the kettle on.

The Way We Were

A stream of Horton consciousness .

Change occurring always opens up a stream of memories of places, people and things.

Today I bring you a stream of Horton consciousness.

The School trip to the Snow Dome in early years. Pearl and I traveled together and arrived early. As we waited she grinned at me and signed vigorously. Although I wasn’t very familiar with Makaton at that stage I knew exactly what it was.

“Yes” I grinned back

“I’m excited too!”

The Horton fundraising triathlon. All the children swam ,wheeled, walked, stepped. Those who could rode bikes, while others pressed buttons to move a cyclist on the computer. It was done in class teams and while it was another teams turn they were supported with whoops shouts and shakers for encouragement.

School plays. This years nativity in which I, Mother of Pearl, was the proud Mama of the Mother of God.

The environmentalist one about polar bears (!?) where 4 wheelchair users bedecked in Christmas tree lights were by danced by TAs in formation while “Northern Lights” played in the background.I’ve seen some world class theatre and contemporary dance but watching this was right up there.

The fortitude the staff showed one dreadful year when Horton lost three children with life limiting conditions in two terms.The way they continued while supporting parents and children and managing their own mourning was commendable and impressive.

A visit from Paralympian Ellie Simmonds,when Pearl was reluctant to return the Olympic gold she’d been allowed to hold.

16463530_1562524223763516_7927489843266961338_o — Thank you Ellie,you don’t want it back do you?

The Oscars when children are presented with Oscars for proper achievements like fabulous community spirit and great communication aid use while dressed up for the occasion.

Oh and the leavers assemblies when the handful of leavers a year are remembered,teased,and commended for simply being who they are, part of Horton family. Huge apologies to the friends whose children left in the last couple of years, I just couldn’t bear to see them go so stayed at home.

I would go on, but now it’s time to go to a leavers assembly I also feel emotional about, although this time staying at home isn’t really an option.

This post is part of a blog a day for Horton.You can donate to help us say thank you here

A blog a day for Horton

Ch – ch – ch – ch – Changes.

Time may change me, but I can’t trace time.

Pearl is currently in transition. In non jargon she has spent half a day at her new school, and today is spending the whole day. The rest of the week, it’s back to Horton for goodbyes, parties and general end of term shenanigans.

I too am in transition.The new school seems really promising, a new start is quite exciting. The holidays are coming, there are still house moving boxes to be unpacked, Pearl has a new set of wheels from wheelchair services.

Last night I dreamt someone told us we couldn’t live in our lovely new house anymore. We went back to the old one, and the new owners had spoilt it, and wouldn’t let us have it back. Then a variety of people I love and respect appeared and told me they hated me. It was one of those nights when I may as well have stayed awake.

When I am very stressed, I get busy. (At one point I was doing three part time jobs and caring for two children with additional needs, plus one with mental health issues) at others I’ll set myself challenges, or overcommit to volunteering.

It works well as a distraction strategy, but it doesn’t actually make the stressful situation go away. If I allow it to, I become totally overstretched and have to drop everything.

It is just possible I am writing a blog a day, to distract myself from the very purpose of writing it.

fullsizerender-6 — All the feels, just all of them.

Pearl is leaving Horton. All the people who have known her for the past 8 years, watched her grow, faciliated her development gone. The staff who encouraged me when I was wrangling with the LA for a place at Kiplings, the people at Kiplings who have washed her, put her in her PJs and tucked her in, will all fade into memory and no longer be part of daily life. Pearl’s marvelous Paediatrician, who has been with us even longer, now works for Staffordshire and has a clinic in Horton. She has listened to me whinge and rail against injustice, provision and NHS shortcomings, and celebrated with me when Horton turned out to be the place, the very place for Pearl. She too will be replaced by someone from our Cheshire, because it makes logistical sense.

I am not good at goodbyes, not good at all, and leaving all these people will be a tremendous wrench.

When my children stay away overnight, I have always put a lipstick kiss on a post it, and written ‘a good night kiss from mummy’.

Just in case I become emotional and rush off on Friday, here Horton is one for you all.

This blog is part of a blog a day for Horton.So far we have raised, through your generosity £390 for the Parent, Friends and Staff Association.To add to the pot and help them provide some extras that make a real difference to the friends of Pearl donate here.

A blog a day for Horton.

Thought for the Day

In which I review my favourite inspirational messages-and a fair few that just don’t make the grade.

This post originally appeared on Firefly Community and can be viewed here

Inspirational quotes, you know the ones. They pop up on your face book feed with a beautiful picture of a sunset, someone climbing a mountain, or jumping in the air with pure joy. They are a mixed blessing. Some can really resonate, a quote from an author, a word of scripture from a holy book. Some can irritate. Some are just plain wrong, I’m pretty sure that Winnie the Pooh didn’t make the “I have a dream” speech, and the things that Oscar Wilde reportedly said, well just don’t get me started.

Hand in hand with this come the helpful little phrases people choose to share with parents of children with additional needs. Most of this comes from the right place, although “God only gives special children to special parents” should be shoved somewhere else altogether.

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I have compiled, for your reading pleasure a short summary of some of the most common. You probably have some favourites of your own. If any come to mind that help you/make you want to punch somebody please share with the community below the line!

Don’t sweat the small stuff, and it’s all small stuff.

In parenting a child with disabilities, as in life generally, this is not entirely true.

We brush up against mortality, severe illness, pain and struggle on a regular basis, plus the big questions of faith, meaning, love and loss. It’s not all small stuff.

Whether you have enough likes on your Facebook Page, if you have sent a birthday card a bit late, if your house is a bit untidy this my friend is the small stuff. You have my permission not to sweat it.

What doesn’t kill you makes you stronger.

This has always been one of my favourites. However now I wonder whether to replace it with

“what doesn’t kill you makes you exhausted, sleep deprived, Clinically Depressed, the possessor of a fierce and dark humour, snappy and reliant on alcohol”

Self-care suggests the first reading is preferable. On the days where the second is more accurate be kind to yourself.

Which brings us neatly to

Be kind for everyone is fighting a hard battle.

You my fellow parent, if you care for a child with additional needs you are fighting a hard battle. The person who has parked in a disabled space with no badge, I have less sympathy for.

The Local Authority responsible for providing care and support for you, your family and your child? Well they are paid, and should be working on your behalf.

For most special parents this could be adapted to Be Kind for everybody is fighting a hard battle with the Local Authority. It shouldn’t be accurate but there we are.

What cannot be cured must be endured

Must it? Well in reality yes, and emotional resilience, the ability to bounce back and keep on keeping on is useful tool in the special parents armour. I would argue however that you need to find people who get you, family friends, parents in the same position, so you can endure it with a better grace together. It may be that you can (whisper it quietly) even enjoy it!

I will leave you with my current personal favourite, which happens to be biblical but I think describes us, our children and our struggles well no matter what beliefs we do or do not have.

But we have this treasure in jars of clay

We are afflicted in every way, but not crushed; perplexed, but not driven to despair, persecuted, but not forsaken, struck down, but not destroyed.

As I frequently find myself perplexed, despairing and feeling forsaken this curiously helps me. Despite all this I am a treasure in my 47 year old body, as is my beauteous daughter in her tricky, muscle weakend, wobbly, treacherous, one.

We are all the same no matter what our abilities or disabilities and that,to me is rather wonderful..

Happy?

In which I ponder the black dog, his habits and my reluctant relationship with him.

This post was initially published on Firefly.You can see the original here

I have always been a big thinker. I don’t say this out of pride, in my experience it is not necessarily an advantage.

An introvert adolescent and the youngest of three, I spent plenty of time alone growing up. I didn’t mind.
I liked reading. I liked thinking. I very clearly remember saying to my mum when I was about four ” but what is a human being?” The philosophical thoughts of a preschooler are enough to make most parents shudder, but I’m not convinced my thoughts have moved along much.

The main problem of having a mind of your own is that you have no one else’s internal workings to compare it to. Your normal is the normal.

When does being a loner, a thinker, a ponderer, tip over into something pathological?

Are all introverts depressive? In an attempt to resist over thinking this I’ll tell you how it is in the grimy recesses of my brain.

Depression to me is hard to explain and harder to admit to. It colours other people’s perspective of you. Go to the GP and I believe a little flashing link appears on the case note screen.

”I think I’ve torn a ligament Doctor” “And how long have you been on the antidepressants Mrs. Scott?” (I exaggerate but…)

I have long felt that any bad health I experience, physical or mental is a character failing. If only I worked harder, ran faster and was an all-round better person, I would not experience this thing. As my excellent GP really did say “you are extraordinarily driven” Well duh?!Through sheer force of will I can, I will, be better!

Oh dear, that definitely sounds like the workings of a depressive brain. Couple that with the fact that I think I’m probably putting it all on. A double whammy.

Also, if I’m not depressed I’m happy. I don’t really do in between. I feel things extremely intensely, or I’m depressed when I don’t really feel anything at all.

In the absolute grip of it I long, long, for it to be over.

So what is it?

An absence of feeling. An abundance of desolation. A loss of appetite for food, drink, touch, smell, life. A deep hole which seems impossible to scale the walls of. A heavy sadness in my very bones. An utter and total loathing of myself, and a certainty that my family, my friends and indeed the world in general, would be better off without my draining existence.

Where does it come from? I know it comes from a lack of serotonin. I know that. But how, and why, and where has my quotient gone? Does somebody else have my measure? Is my happiness so happy I spent all my serotonin on a good day? Where does it go?

I lie some mornings in bed, sniffing the air. Is it here? Has it gone? It’s gone! I leap up! Oh. No Still there. On days like this I would amputate my own arm with no anaesthetic if someone told me it would make that thing, black dog, cloud, slough of despond, go away.

Sometimes I sense it creeping up on me. If there are too many hospital appointments or LA fights, I keep my wits about me and take action before it settles in.

Occasionally its stealth amazes even me. It quietly whispers into my unconscious brain “you’re worthless” So quietly that it becomes background unquestionable fact.

Most of all it lurks invisibly. People don’t see it in me, I keep it well hidden. Well would you go out in public if you felt like that?

Recently I’ve been naming and shaming. Get it out there in the light, show it up for what it is, in the hope it will burn up and fade.

Mainly at the moment I thank Big Pharma for the little white pills. They contain the right dose of my elusive serontion. I have hated them, I have resisted them, but now I welcome them.

Just now, right at the moment they help. They can’t solve my problems but they can smooth over the rough edges and help me muddle along.

Isn’t that all that any of us can really do?

A Poster Girl for Disability

This post was originally published on Firefly Community. You can see the original here

Years ago, we had a disastrous meal out. Pearl was present but not yet born, perhaps my reactions to it were coloured by the 8 months of pregnancy hormones sloshing around my body.

Four of us, Father-to-be of Pearl, a small Rab and preteen Glory on holiday. Visiting a highly recommended gastropub. A treat.

As this is not trip advisor and was eleven years ago I shan’t share the location.

The manager did not seem keen on customers, the service was at a snail’s pace, nothing on the menu appeared to be available, and according to F-t-boP, the floor in the mens toilets was not safe for sandals wearers. Lovely.

As we sat fuming a couple arrived. A man, in a wheelchair with a neurological condition, and his partner. As we longed for distraction from the diabolical service, and we are inveterate people watchers, we were fascinated to see him using his computer to communicate. Ten years ago this was even more unusual than it would be today.

Of course, I mentioned it to the children, I was a Speech Therapist who specialized in neurological conditions, it was a break from moaning about the service, and it was educational.

After an argument about whether ice cream was available on its own, as well as with apple pie, we paid up, relieved to be escaping. The children got up and ran over to the couple and stood smiling at them shyly and looking at the computer. I quickly joined them

“I’m sorry they are interested in your communicator”

Mrs. scowled angrily at me.

“We are trying to eat”

We left, tails between our legs, a horrid end to an awful trip.

I’ve thought about this incident a lot since having Pearl. At the time I was deeply hurt, couldn’t they see we were really interested and trying to make a connection? Now I think I was probably unforgivably ableist.

Does every trip out for a disabled adult or child have to be an educational experience for society at large?

Do ‘the disabled’ (and if you hear anyone refer to a people group in that way, draw your own conclusions) have a responsibility to be charming, well presented, and approachable at all times? Should they be expected to represent not just themselves, but the whole disabled community every time they venture out to the supermarket? Hell no.

Personally I want the freedom to be messy, tidy, made up, fresh faced, happy, miserable, charming or sweary as the mood takes me. If I become disabled (and a fair percentage of us will, through ageing alone) I don’t think that is going to change.

The first time we had personal experience of this was during Pearl’s statementing process. I was speaking to the lovely Educational Psychologist and telling her I was fearful that Pearl’s mainstream nursery would struggle, as they had no experience of disability.

Her response, that it would be a very good experience for all of them, was no doubt true, but not what I wanted to hear.

‘I don’t want her to be a poster girl for disability, I just want her to be a little girl”

I told Father of Pearl when I got home.

Like it or not, wherever we go, whatever we do, we do attract interest. Admitedly this is added to by Pearl patting people on the shoulder or grabbing women’s handbags (I taught her well…)

So how do we deal with it?

I do not want to sit at home avoiding stares and questions. Nor do I always want to explain Pearl’s communication book or diagnosis, but I would rather she was out there in the world, than tucked away out of sight.

I suppose a balance has to be struck

A wise researcher once asked me what I wanted the world to be like in terms of inclusion.

“A CBeebies world” I answered.

Shortly before Pearl was born, thanks largely to Something Special and Mr Tumble, different abilities have been very well represented on childrens BBC. In all CBeebies programmes there is a huge range of children, glorious to behold, with frames, crutches, white sticks, hearing aids and all manner of genetic conditions. Graduate to adult TV and there are articles on how inclusive this soap is to have this or that actor, with a disability. Not on CBeebies. They are just there. No fanfare, no overt educational message, just included.

That in the end is what I want for my Pearl, her friends and the Pearls of this world.

Not the constant requirement to be an ambassador for disability.

Acceptance.

Inclusion.

A CBeebies world.

The Kindness of Strangers

In which we meet an unexpected angel, unawares.

This post originally appeared on Firefly Community and you can find the original here

Christmas this year was a bit of a wash out.

In the seven-week run up, our house had become a breeding ground for all kind of viruses.

All of us (bar Pearl) had flu, colds, infections and stomach bugs, with hardly a day off in between.

I couldn’t exercise and found (who knew?) that if you eat more than usual, while doing precisely nothing your clothes inexplicably shrink.

It was with some relief that January and better health rolled round. The first hospital appointment of the year, on the second of January, seemed like a return to normality.

As Pearl grows older it seems likely that she has a degree of ASD in with the mix of physical, cognitive and sensory problems. She is very routine dependent and her understanding is very experienced based.

We are well used to seeing Pearl’s marvellous orthopaedic surgeon, and Pearl is usually very cooperative. We park up, she gets into her wheelchair (it’s a long walk from the car park to outpatients).

The first working day of 2018 was different. Pearl’s kaye walker (a kind of a walking frame on wheels) was just visible in the back of the car. On the hour-long journey, she insistently pointed at it and shouted.

“Do you want to walk when we get there?”

She deploys her only recognizable word.

“Yeah”

“OK. We’ll see if we have time.”

How blithely I make this throw away comment.

We arrived. There was time. Pearl was insistent.

Now usually when I say Pearl goes in the wheelchair, actually we go straight to the shop and buy fruit and a biscuit for distraction purposes.

Pearl set off in her walker. I hadn’t realized how much she’d grown over Christmas and it wasn’t providing her with much support. At some points she was carrying it around her. It was frankly not ideal.

After getting to the front of the hospital with some difficulty she stopped and signed biscuit. We still had at least another 5 minutes before even entering the hospital, let alone booking in and getting to the clinic. I looked at my watch.

“I have some biscuits with me” (I was a Girl Guide and the motto, “Be Prepared” is engraved on my heart)

“We’ll have them when we get to the waiting room”

This is clearly not the right answer. Screaming, suddenly and out of nowhere, starts. Proper blood curdling, being murdered screaming, emanating from my usually biddable and cheerful child.

Now I’m in trouble.

Is she in pain? It is a long walk,the walker isn’t supporting her.

Is she expecting the biscuit we usually buy?

Is she suffering sensory overload? A lot of people are leaving the hospital and streaming past us. It is very noisy.

Or is she just in a bad mood?

I have no idea, I can’t use her PODD communication book because my hands are full of the stuff we might need for any and every eventuality. I can’t take her back to the car for her chair, it’s too far and we’ll be late. Pearl will not move an inch forward and now she is grabbing random passing strangers.

It had all been going so well.

Suddenly a woman with blue hair, piercings and fabulous boots walks straight towards us. I get ready to stop Pearl grabbing her, when this stylish angel looks straight at me and says

“Can I help?”

This is only the second time this has only happened to me in eleven years and thousands of meltdowns, so I’m a little nonplussed.

My immediate, and rather pathetic response.

“I don’t know. I’d love some help, but I don’t knowvwhat’s wrong, I don’t know what you could do”

Resourceful. I know.

Then the inner Girl Guide kicks in. I have an idea.

This amazing stranger agrees to stand with a completely hysterical child while I run back to the car, at some speed, for the wheelchair. I explain all this to Pearl, who is really beyond hearing at this point. I check again with this magical apparition.

“Are you sure?”

She is!

I leave them with the the emergency biscuits and make a run for it.,

In the distance I can hear her, gently explaining.

“Mum will be back in a minute. Would you like a biscuit? No? You want a hug?”

I turn to see Pearl fling herself into this persons arms and sob messily on her shoulder.

When I return, she is still cuddling a calmed Pearl and speaking to her with great gentleness.

This extraordinary individual then proceeds to apologize for not knowing how to help Pearl into her chair, which is really not a problem at all, and suggests she stays with her while I take the walker back to the car. She does.

By the time I return, everything has returned to normal.

Biscuits have been consumed, legs are rested. All is well

So, when a blue haired angel appears on the front drive of Stoke City University Hospital, how do you show your appreciation?

She deserved an Oscar, a Damehood, at the very least a cup of coffee, but we had an appointment to attend.

Instead I touch her arm look her in the eye, and say.

“You have no idea how grateful I am for your help”

“S’alright, no bother”

She smiles, turns and fades into the crowd.

So, oh stylish one, wherever you are, whatever your experience that led you to help this child, on this day, I thank you from the bottom of my tired, overwrought mothers heart.

You saw through all the screaming to exactly the wonderful person my small girl is.

Saw through all my attempts to remain calm and capable to exactly where I was.

For this I salute you, and will never forget you.

Thank you.

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