Uncategorized – The Wrong Kind of Snow

A Marathon Not a Sprint

This morning somebody called me an inspiration, and for once I needed to hear it.

If you too parent a small and special individual of varying abilities, you may not appreciate this term.

It tends to be overused at the disability community.

“You’re an inspiration”said glibly, covers up the question of whether a person is getting enough support, is in need of extra help or indeed is managing to cope at all. If the Disabled and Carers are are all inspirations that in itself should be enough, and society at large, need not examine it’s responsibilities too deeply.

At the supermarket with a small non verbal personage having a meltdown (your fault you’ve utterly misunderstood a perfectly well executed Makaton sign, because you were busy looking at the waterproof mascara) “You’re an inspiration Mum”spoken encouragingly from beside the Tampax, (by someone who you are definitely not the Mum of) can have precisely the opposite effect the speaker meant.

I have a variety of ways I maintain my mental health. Punching well meaning people in supermarkets is tempting, but not sustainable. Running is.

Four years ago I decided I’d run a Marathon before I was 50. Just Because . I entered the ballot for the London Marathon. I got in. First time. It was on the day before my 50th Birthday. Meant to be clearly.

I ended up running the Marathon on my own on the 26th of April during our allocated exercise time in lockdown-because yes it was that year and I had prepared and I’m nothing if not pig headed.It was slow, it was hard, but I did it and my mum made me a medal out of a shiny button and a piece of gold elastic, because-well that is who she is.

Deferred to October last year, I picked up a hip injury.(Runnerspeak, non runners hurt their hips, but us runners, we ‘pick up’ injuries, tell all our running friends about them, and they can regale us right back with tales of when their toenails fell off. Nice)

Initially and in common with most runners I was going to continue with the acute stabbing pain in my hip, even if I had to crawl crying around the entire 26.2 miles. Fortunately sanity kicked in and reminded me that:

1.I still had took after a rather large disabled 16 year old and needed to be injury free

2. Running was a rest of my life thing, not something I wanted to stop because I’d accidentally broken myself.

The follow up to this massive introduction is that I am about to run the London Marathon in 5 days.

I have followed my training plan.I have been tired, I have stayed injury free, I have enjoyed some runs and hated others. All this is to be expected.

So now I’m tapering.[Runnerspeak -you don’t usually run the whole 26.2 miles before the race-you work up -one long run a week, shorter runs and speed runs mixed in-to your longest run (between 20-22 miles) about 3 weeks before then cut back (taper) considerably to give yourself your bounce back] What I really did not expect was to hit a mental block during my taper weeks. I don’t want to run, I”m fed up with routes I usually run, I’m absolutely shattered. All I can think about is the marathon but my inner voice is telling me “you can’t run a marathon don’t be ridiculous, and if you do finish (excuse me?!) you’ll be rubbish”

Somewhere I have picked up the idea that unless I am Eliud Kipchoge-and there are oh so many reasons I’m not-I probably have no business running.

I don’t need to tell you this is unrealistic. I know it’s ridiculous-but my inner cheerleader has somehow disappeared and sloped off to encourage another Marathon runner. I only hope they appreciate it.

I am a 53 year old woman. I have had a very difficult year. My mum who had been living well with dementia suddenly lost capacity, peace of mind and a sense of who I or she might be. I may have mentioned I parent an extremely strong willed individual with a variety of health and personal care needs, no verbal language and extremely strong self esteem. It’s exhausting.

I run for head space, for the runners high, to be outside in all weathers. I run for myself, and to make sense of my thoughts. I run to be less shouty, and to sleep better. I can generally place myself in the middle of the pack for my age group. I may not be an athlete BUT I am a runner.

And that should be enough,but this weeks voice says no. This voice insists you should only run if you are chasing a personal best, constantly improving and watching your spilts, which should be negative if at all possible (splits-how fast you run a mile/km-negative splits mean you get faster in the second half of the race)and if you don’t achieve this WHO EVEN ARE YOU? This voice is the sound of my schooldays, with a little bit of disordered eating speak thrown in for good measure (“if you ate more protein/less protein/more/less carbs you’d be better step away from the chocolate egg”)

So at the Optician to pick up some lenses this morning ( I figure I may as well see the sights mooching around the race route) the Optician asked me how I was. When I said fine she asked again (this what happens when you know people before they become your Optician) So I tell her. And she calls me an inspiration. And I don’t cry because she’s checking my contact lenses and they might wash away- which is bad form. It turns out she “used to do bit of cycling”(in an,’ I was on team GB’ kind of way) and that she knows exactly what the week before a race can be like. And then she hugs me and gives me my contact lenses and a pep talk.

So if you are running a race, doing a park run, starting out on a new venture, parenting an SEN child, slowly losing a relative with dementia, let me tell you that you too can do it. That you might have doubts, that your inner voice may be unhelpful, that you will have bad days -but everybody does. It’s normal. It’s Life.

The reason you are an inspiration is that you keep on keeping on during the bad days, not that you are some kind of photoshopped saint who’s already achieved inner grace; because let me tell you these people do not exist outside of your instagram feed.

One foot in front of the other. It’s that simple . It’s that hard.

Good luck to anyone else running the London Marathon this weekend.

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

Short blogs about running.

How I started running and forgot I was no good at sport.

Deirdre O’Connell can you hear me?

I know I was a disappointment to you. Not all speed and golden limbs like the Team Captains. Crying on cross country runs and having no coordination did not make me a top pick in a PE class, although my lack of concern about my appearance made me more enthusiastic about hockey than some of the well coiffed and manicured Essex girls I grew up with.

In my young day there were two types of girls. Nerdy swots, or gorgeous sportswomen

You can guess which category I fitted when reading this report entry, from the above Miss O’Connell PE.

“Jane continues to try to give us her best, but PE is not her strongest subject area”

I followed up the crying on runs with throwing up during a time trial in a biology class about physiology. Genius.

Encouraged by parents who felt thinking was more important than running, and an “everyone in our family is rubbish at sport anyway” I stuck to regularly being bad at ballet-and gave up on everything non dance related.

So what changed?

The Gym. A place where you could turn up follow a programme and go home.A place that children (when I became that stay at home mum) were not allowed.Suddenly fitness became attainable, and what is more I found that it affected my mood positively.

Then I became that other parent-a parent of children with additional needs.

I began to dream of running. (Excuse me I think my subconscious is showing)

However, how could I, a person who was interested in reading and thinking, the last person picked in every team, an enthusiastic but talentless dancer who had picked up a longstanding ankle injury during a ballet exam(yes truly) possibly run.

I pronate, I am gangly running couldn’t possibly be for (as my mother would put it) ‘The Likes of Me” could it?

I never did my D of E. Did I mention I’m not the sporty type? When the first born started to do her bronze I was desperately trying to pay her back for having been ineffective enough to have produced a sibling who took up all my time.

“Don’t worry about the sport challenge we can do Couch to 5 k together”I said blithely.

And so, between caring for a small needy person, a middle child with latent Aspergers, and working part time as a Speech Therapist,I laced up my trainers and plodded.

Nobody told me what this meant.Couch to 5K if you haven’t come across it, is an easy accessible way to start running.You walk/run over an 8 week period until you can run for 5k. Despite feeling I couldn’t run for 5 minutes much less 5km we carried on.

I say we. We started in February. 3 weeks in Dof E girl who gets asthma got terrible hayfever and asthma and stopped, And I just couldn’t.

How the above has led to me signing up to run the London Marathon-a Marathon Miss O’Connell-might take a bit more explaining.

But that is a story for another day.

If you feel inclined, sponsors for my Marathon challenge can be made here .They will both encourage me in my training and help people ( like my wonderful Mum) living with Alzheimer’s.

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The Social

This is unashamedly a shout out to an organization that has given Pearl something I did not think was achievable, an age appropriate social life.

When my eldest two were little they did loads, Tumble Tots, Clubs, you name it they went.Admittedly this was often as much for my mental health as theirs, I needed to have a routine and get out of the house.

I tried to parent Pearl in the same way, we joined the local Gym Babes class, and went to mums and tots play groups.After her peers all graduated to Tumble Tots and it became obvious that she as the only two old lying on a baby mat in mums and tots, we quietly withdrew.

Besides I did not have any trouble filling my diary, I was constantly at the hospital, the CDC and hydrotherapy.

Then Pearl started school, all this stopped.She was too tired after a day concentrating and cajoling her body into sitting. Also her friends lived over three counties,so she didn’t see school friends often.

It’s a lonely place worrying about your Childs loneliness,and a sad place reflecting that all your twelve year olds friends are adults.

There was a local group that looked at activities for all, but it was on too late (6.30pm!A day of using your unruly muscles to stay upright meant Pearl was in PJs but then!)and also the other children were more physically able

So it was off limits.

Then Peal moved schools resulting in two things.Her school day was shorter, she was less tired and I was more than willing to fill up the time before bed.

Initially we attended a holiday session of Sports Club.I stayed with Pearl and we tried, volleyball, hockey, archery, skittles, and football There were lots of helpers and I was told that Pearl could be left while we went updaters for coffee.It took me a good few weeks to trust these people, but as I saw Pearl became comfortable, I felt braver.

From there she got onto a one to one Alpha Swim, again more physically disabled than her peers, the teachers made the necessary adjustments and she loved it.

But then! The highlight of her week!

Fun 4 All! A huge play centre with massive play frames and slides. I was well familiar with it as it was started by a fellow “ballet mum” when my middle child was small.We’d had parties and regular play dates there.But it was huge noisy, with impossible climbing frames and was therefore not for Pearl

Father of Pearl shows us how it’s done!

Pearl could not manage the play frames alone, she would need time to be talked through the movements she needed to make, it would be time consuming and need quiet and patience from other users.Have you ever been to soft play?Patience and queuing are not the strong suite of most of the clients who attend!

BUT every fortnight this same play centre is open to Pearl and all the other children in the local area who have additional needs. No one else.

It’s chaos! But extremely well controlled chaos, and importantly about an third of the usual number of children attend.

It is also staffed by volunteers and Cheshire East employees who work for Everybody Leisure, our local initiative to encourage activity for all. All. No matter what needs or challenges.

It is led by the wonderful Andy, who coordinates the programme,and who has a pretty astute view of all the kids abilities. It was also Andy who has organized through the scheme for Pearl to attend the weekly swimming lessons.

On the first week Pearl was extremely nervy, worried about noise and needing me to accompany her every step. She attempted going on the climbing frame, but was overcome by fear and came back down rapidly.She was by far the most physically and cognitively challenged there-and I wondered if I’d made an error taking her..

What a difference a term makes!

“Go.Car.Fun4All”-determinedly jabbed out on her communication book.

She flies through the gate to get in, hardly looking back, and, accompanied by staff can make it right to the top of the frame, and down the giant slide.

The most normal, and age appropriate social events in Pearl’s life, events that I never thought would be possible are all happening regularly thanks to Andy and his team.

It is simply marvelous and shows that is possible to make local services inclusive to everyone.

Thank you to Andy and all the wonderful workers, and thank you to the LA for recognizing this is effective and excellent service. Long may it continue.It has improved Pearl’s physical abilities and coordination, social interaction and it is surely good for her general health.

if you have local opportunities like this, and are concerned that your child won’t manage,give it a go-you might be surprised-I know we are!

Hospital

I’m sitting here beside a sleeping girl, preparing to spend a night on a camp bed.

It’s my fault this surgery.Pearl drools massively and has already tried out a 98% effective tube tie.She was of course the two percent.

Pearl doesn’t have difficulty safely managing her saliva. She doesn’t get chest infections and aspirate her secretions, but she does drool.

Continuously and obviously.she drools Soaking her bibs and clothes rotting through dress fronts and causing other children to shrink away and pull faces.Her lips crack and her face gets sore.

So I told the Surgeon to do everything,all the excisions, extra ties everything do it!!

It would be finally and completely dealt with.

It is the one surgery that I have felt guilty about, because it seems cosmetic.

Drooling does not bother Pearl.In her world where she is self assured and loved and properly aware of her own worth she doesn’t care.

So I made the decision to cut and tie,and channel out and stitch and now she is lying beside me with two drains in her neck utterly exhausted.

I think of all the other Special parents who do this too.

Surgeries, electives, emergencies, sitting calmly by beds watching other parents come in who are terrified of their baby having an anaesthetic for a hernia Do they too feel for the ‘typicals ‘?

I find I want to comfort them at the same time as wanting to shake them and shout “it’s only a hernia and then you get to go home with a normal baby”

It’s not a competition this feeling of pain and trauma,of course their pain is just as real and terrifying as mine.But still.

I sit here,chatting with the staff,explaining Pearl’s problems to them for the millionth time.I intersperse this with careful explanations to Pearl checking she has understood.I’m so calm so professional.

Yesterday I tidied the entire house in the morning and have exercised so much in the last few days that I am quite exhausted.

Yesterday afternoon I was entirely unable to concentrate on anything and had to crash on the sofa watching trash.

But still sat here,writing I look like a woman who is coping. And I am.

And yet.

The desire to run screaming through the hospital is uncomfortably close.

The temptation to creep away and let someone, anyone, cope with making these decisions and dealing daily with the emotional fallout of all it. It’s there.And it’s real.

And so I send good thoughts and hugs and tears and virtual chocolate to everyone of you who sit calmly beside a child hoping that you have made, are making, will make the right decision.

Because you are.You have.And you will.

Nobody said it was easy. Nobody said it could be so hard,

I believe somebody sang that once.

This my friends is what love looks like.

A special shout out to the man who supported me in this decision and struggled with it having to be done because his fathers eye sees only perfection in his small girl.You are an awesome Dad.

In My Life….

There are places I’ll remember,all my life..

Lennon-McCartney 1965

Change is afoot in this corner of East Cheshire.Not only have we recently moved house (more on this in a future post) but also a small girl of my acquaintance is preparing to move schools.

Pearl has been attending her current school since the age of three. It is simply splendid, and anywhere else will be hard pressed to match it.

Finding your child needs Special Education tends to come at a time when you are already trying to shoehorn your expectations into a new and unusual shaped container that you didn’t order or particularly know how to use.

Developmental milestones? Not met

Speech? Non existent.

Muscle tone and coordination? Not so much.

Walking?

Meh.

Somebody mentioned something called “School for Parents”which ran every week. They took their child and thought it was wonderful.

It sounded good, but at the time we were so swamped with medical appointments, weekly Physiotherapy,the Child Development Centre, and Hydrotherapy. I couldn’t see how to fit it in.It wasn’t even local, but a half an hour drive into the next County.

Finally totally disillusioned with the CDC, and with Pearl about to start supported sessions at our local nursery I thought we’d give it a go.

Long story short-a terrible first session in which Pearl wept consistently, future friends daughter with Williams Syndrome (who can’t handle loud noises) shouted “stop it Pearl”,and I felt like a bad parent. Two further sessions in which Pearl improved sitting balance(yes in two two hour sessions!)and generally had a blast, convinced me that Conductive Education was our route forward.

“I wish she could go there permanently ” says I.

“Well” from the ever practical Mr PJ.

“Isn’t that what her statement is for”

And it was, and it is and she did!

69627_595697327112882_1192688039_n — Uniform on and not a hair out of place.

For the next two weeks Pearl’s last at Horton Lodge I will be writing daily about what this school has meant to us.Partly as a huge thank you to the staff, partly as an aide memoir for my dotage, but also as a request, from us to you.

If you have enjoyed reading my blog, would you consider giving a donation to this amazing organization? It will provide extras for the pupils and be a sign of how grateful we are, that somewhere in the Staffordshire Moorlands,children will be singing songs while working on coordination while we move on to the next stage.

10537194_974303055918972_2670339456466439411_o — Fencing?At a school for children with physical disability?Why yes!!

Let me introduce you to a place that feels like heaven and home all rolled into one.

The school mission is “Working together, achieving potential” At last a place where parents are treated as partners, and even have a room with comfortable sofas to meet in!

The logo on the shirts, one hand helping another smaller hand.

When we first arrived they had school donkeys. Yes really. If you are a parent you will be familiar with the forms you need to fill in as school starts.

One of ours “Do you give permission for your child to groom, feed and ride the donkeys?

Well yes!

And finally (and this sums up everything I love about it), at the end of Assembly, not “The Golden Cockerel” (my 70’s school hymn) or “Colours of Day” (Mr PJ’s) but “Reach for the Stars” by S club 7.

Nuff said.

‘We’ve got to all stick together
Good friends, there for each other
Never ever forget that
I’ve got you and you’ve got me,

So reach for the stars !

Please consider giving something,however small.What a wonderful goodbye present that would be!

You can donate here

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.

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.

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.

16996122_10155102975247915_7258471289518553828_n — “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.

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.

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.

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.

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.

*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.

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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