Tag: #anxiety

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.

 

 

 

The Best Laid Plans.. I

This post originally appeared on Firefly.

My mum has always said that nobody should ever have a first baby. Much better to start with a second when you have all the relevant experience.

In a similar spirit of helpful but impossible advice I offer you a planning schedule recommended to be in place before giving birth to a child with Additional Needs.

 

You are most welcome.

 

Do not have a prior history of depression, or any health needs physical or mental of your own.

You won’t have time for them. No professionals will ever think of asking after your health, so really there’s no point.

 

Knowledge of law or education, preferably to degree level is highly advised. Without these the Local Authority may attempt to tell you that you are not entitled to expensive things, that you really need and actually are.

 

Career ambition for yourself is not necessary, you will be required to cancel meetings, work days and other plans at the drop of hat to fit in appointments, which mysteriously seem to congregate together within a fortnight. You can of course cancel and rebook, but that risks being labelled a difficult parent. It won’t be written anywhere, but everyone will know you are.

 

Ambition generally is a dangerous thing, imagining you could go out alone or with a partner is optimistic, on some days going to the toilet alone will be completely beyond your capability. Believing your child deserves a place in society is also problematic. Being prepared to settle for less can lead to reduced emotional stress and, therefore, peace.

 

An independent income, preferably from a Trust Fund or inherited wealth will make your life easier and less of a drain on the state. It also ensures that you don’t have to discuss your family’s difficulties or finances with well-intentioned Charities. Think of the time you could save writing crowd funding requests!

 

Ensure that you are a very young parent, in peak physical condition and that this is your only child.

 

Be certain that you are an older parent that cares less and that this is at least your second child.

 

Be in an extremely stable relationship with a healthy, resourceful and emotionally aware partner.

 

Be a single parent with an incredibly supportive family and friends, you don’t have time for a relationship anyway.

 

Ensure your house is on one level with total accessibility to all rooms and hoists. You may not need them now but plan ahead.

 

Nurture friendships with young, fun but responsible people who can drive, and display a maturity beyond their years, not for themselves, you understand, but they have Personal Assistant potential.

 

Test your remaining friends by constantly cancelling plans at the last minute and taking weeks to respond to their texts. If they don’t like it, you may as well ditch them now.

 

 

 

This then is my recommendation to you. I myself have opted for the all the gear and no idea approach to special needs parenting. On most days I actually seem like I know what I’m doing, on others-well there’s always cake and cynicism.

 

To finish I’ll share another gem from the mothership. She has always maintained that no matter how you parent, or what mistakes you make, as long as there is love in your home everything else will smooth itself out. And, in this at least, I think she’s right

 

GgQ1vQEITlmXM3XdGjPlDw

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.

 

 

 

 

Help?!

In which help is required, and two schools take very different approaches to providing it.

We don’t do neurotypical in my family. As well as Pearl, we also have a son with Aspergers. It’s fair to say our school experiences with him have not always been positive.

Differences were apparent throughout Primary school, but as he hit year 6 and the pointless SATs, his stress levels began to rise exponentially.

His school had just been through a particularly unpleasant Ofsted inspection, and as a result staff stress was high, and the pressure to ensure all achieved, made the tests much more of a focus than they had previously been.

Rab (as he is known in the blogosphere) was having ‘tantrums’ (yes, before diagnosis we thought he was acting up) and was becoming very sad and withdrawn. He also experienced frequent stomach aches.

Busy with Pearl I had put Rab’s previous anxieties down to being a sensitive soul and mildly eccentric (oh my boy I’m sorry) I had not realized that the daily trauma of trying to fit into a neurototypical world, was frazzling his autistic sensibilities.

Finally as depression began to bite him and suicidal ideas were voiced I took him to the GP.  Twice. And was told twice, that I was overmedicalising the situation.

I do hope the fact that I’m known to live with depression did not cause our splendid GPs to feel I was over reacting. I do hope so. They told me he could be refereed to CAMHS but the service was so busy I probably wouldn’t get an appointment, and that the referral needed to come via school.

Some background. At this point I had had children at this excellent primary for 9 years. I loved it. I had been Chair of Governors and knew the staff. School had participated in a study Rab had been part of when he had been diagnosed with anxiety disorder. I asked his class teacher if she would refer to CAMHS with the help of the school nurse.Transition to High School was approaching. The holidays were looming and I was very, very concerned. I needed help.

On the very last day of school, having heard nothing, and assuming it was all in hand,  I asked the class teacher,

“have you heard anything from CAMHS?”

“I’ve discussed it with the Head who feels it would be better coming from his High School”

The High School that hadn’t met him, that did not know his peculiarities and strengths had not seen his ‘tantrums’ in action.

I share this, not to shame the school. It was otherwise excellent. I think in retrospect, Ofsted stress and end of term frenzy all played a part. I also think they had a lot of work to do on training and awareness of Special Needs in  general and Autism in particular, which I’m sure has since happened,  as they have an experienced  Governing Body and a new Senior Leadership Team.

No. I share this in order to show you what busy, overstretched schools are often like, taken up by all the gubbins that Government throws at them, and the admin required more related to school performance than pupil (and teacher) satisfaction.

And now I give you the alternative.

This Monday we had an excellent morning in Horton watching Pearl and her class mates swim, before witnessing the opening of the new school swimming hoist! (Things are a little different in Special Ed! ).

As I left I was grabbed by one of the staff, not Pearl’s teacher, and who in fact has never taught Pearl, although she enjoyed a weeks residential at an outward bound centre (more of this tomorrow!). Pearl is an experienced user of the PODD communication system.

 

fullsizerender-6
In PODD we trust.

“Jane”

Said this astute individual.

“I’ve been watching Pearl use PODD and I think she is ready for a more high tech version-what do you think?”

Chat followed, and we both agreed.

“Well then, I’ll refer her on to the Specialist Centre, we’ll do it now because we have all the information from knowing Pearl. It  will take High School a while to see how she communicates, but we already know”

Two schools both excellent.

One with Classe of 30 +  can’t take the extra work and hasn’t spotted an issue.

Another with high staff to pupil ratio, and freed  to think inventively about achieving curriculum  goals has volunteered information based on  pupil observation, and initiated extra work under pressure at a busy time.

All I can say is that if I was a teacher, given the choice, I’d work in Special Ed.

If I ran the Government (and frankly I’m a little too busy to take it on)  all schools would have a diversified curriculum and measuring and testing would have low priority at Primary level.

I suspect that pupil mental health would be positively impacted, and teacher burn out greatly reduced.

But what do I know? I’m only a mother.

Come on Secretary of State for Education, lets all #bemorehorton.

 

This is part of a blog a day for Horton.Any opinions are the authors  and does not necessarily reflect those of the school.

Help Pearl leave Horton Lodge PFSA a huge thank you, here.

 

 

logo
A blog a day for Horton

 

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?

 

Seasons of Change

I see summers of small girls’ past, mine, the Glory’s and my decade old darling

This post appeared  before the summer holiday, on Huffpost

 

The summer holidays are fast approaching. School will soon be out.

The weeks have been filled with trying to cram in as much paid work as possible, organising personal assistants, booking holidays and filling The Glory’s expectant cardboard box with university essentials.

This holiday is the beginning of huge change in our family. One will leave, one will go back into mainstream from special education, and one will enter her last year at a fabulous primary school.

My two girls, the first who has been stymied by acute anxiety, whose perfect 18 year old body she mistrusts, despises and longs to change.

The smallest, full of self esteem, whose body is unpredictable, whose muscles are not trustworthy. I am in awe of what she makes it do, through practice, persistence and sheer bloody mindedness.

My own menopausal body, which has thrown up surprises, moods and huge chemical imbalances. I am in awe of that too, and its production of three independent minded beings.

Perhaps it’s the sense of approaching change, but I am filled with deep unspecified yearning.

My go to strategy at such times is to ramp up activity (half marathon training anyone?) Add a couple of blog challenges, plan career development and start a few projects.

Experience tells me that distraction will work in the short term, but that carrying on at this pace will lead to burn out. The sensible part of me looks around for a cause.

This morning, when I woke up suddenly in the middle of a dream, I realized. It’s Pearl. It’s always Pearl.

In ten years of life together,this child has taught me plenty. We are inextricably linked. She needs me in a way that my other children simply don’t.

Someone once told me that when babies are first born they don’t know where you end and they begin. Having so recently been part of you, they think they still are. They quickly grow out of this stage and make bids for independence.

Pearl is one of the most independent minded people I know, she still seems to believe I am part of her. On tired days she gives me a spoon and uses her hand to guide mine to her mouth. She snuggles deeply into me when life is tough, as if trying to merge straight back through the skin and become part of me again.

I know Pearl’s body like I know my own. By 10 my other two were becoming private, dressing themselves and choosing clothes. Telling me if bits hurt.

I see all of Pearl everyday. Changing soiled nappies, noticing differences in muscle tone. Fighting tight calves into splints. Noticing her body preparing for approaching womanhood – I too don’t know where I end and where she begins. The smell of her hair, the feeling of her in my arms is always present.

Pearl, is non verbal but anxious to communicate. Gesture, vocalisation, the superb PODD book all used daily, permeate our lives. She though would prefer me to be her communication aid, and retains a simple belief in my psychic abilities, which are frankly non existent.

All of this strength of feeling and entanglement is now becoming muddled by her hormonal changes, which are leading to the normal mum/ daughter aggravation, further intensified by her need for me. She wants me, she wants to do it herself. She needs me so she can do it herself. It’s all very emotive.

This may go some way to explain my nightly dreams at present. Every single night Pearl talks.
it is always the first time. It is always realistic, her voice, slightly mangled consonants but clear words. It used to be “Mum”. Now it’s been replaced by sudden nouns describing where we are in the dream, followed by incredulity, growing vocabulary and a sense of wonder and relief.

And then I wake up.

Days filled by campaigning, explaining and ardently desiring equality and a proper acceptance of all, replaced by nights of yearning and longing, for my girl to turn to me and speak.

I see summers of small girls’ past, mine, the Glory’s and my decade old darling

Summers of the future shimmering in the distance.

How will my body change, will it remain healthy enough to carry on caring?

Will the Glory learn to love herself as much as I do?

And Pearl herself? Will my dreams come true, sounds turn to words? Will she live a long healthy life? Will her muscles age well allowing her a measure of independence?

Our bodies, perfect in their imperfections, changing with age and experience and fearfully and wonderfully made.

 

 

If you need extra support with caring commitments join the community at Carers UK

 

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.

img_4304-2

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.

 

SwanUK        MN-blognetwork-104-final

 

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

 

How to Win Friends and Influence People (L.A. edition)

In which the system is broken, and no-one applies common sense to fix it.

It is a New Year, time to look forward with hope at the exciting times ahead. Much as I’m trying to move forward with a song in my heart and a spring in my step (other cliches are available) I am having some difficulty.

Is this because my youngest daughter has a myriad of health, educational and physical challenges. Not entirely.

Is it because my eldest, The Glory, is beset by mental health problems and struggling to find her way through her tricky eighteenth year? Well partly.

Is it because Aspie teen is preparing to transition from a very supportive Special provision at GCSE back into the mainstream setting that caused him pain for A Levels (his choice) Well take your pick.

But actually the thing that is causing me the most stress, chaos and down right anger is my local authority and the way they choose to implement direct payments.

Have you heard of Direct Payments? They are an excellent idea for increasing independence and inclusion. In theory.

Pearl is entitled to support in our local community by a Personal Assistant.As her needs are quite significant, we are able to access 6 hours direct payments for  support per week in term time and 14 in the holiday.

We are able to use this money in a way that  supports Pearl. Initially she attended Rainbows with a Personal Assistant, and I had someone in to help with housework and ironing too. This was recognised as freeing up my time to spend, one to one with Pearl.

As a parent, you have to be very organised to benefit from this system.You have to keep good records (we have a separate bank account) and all receipts.This is all well and good, after all this is tax payers money and an account must be given.You have to find the PA, set up their contract, submit time sheets and pay wages. In effect you have become an employer.

Every year the situation is reviewed and every year you have to submit all the paper work. Our Local Authority regularly believes that asking a parent to submit all the paper work over a half term holiday, when the child in question is at home, with a week deadline, and veiled threats that benefits will be stopped if the date isn’t met is OK. It isn’t, and also it’s unnecessary and shows bad planning on their part.This however is not the thing that has riled me so considerably today.

Last year it was recognised, that we need more hours.It does tend to benefit the system if Carers don’t break. The money immediately started to flood into the account. Marvellous. Finding a PA isn’t instant. It takes a very particular person to work with my girl.They need to know how she works, what her medical needs are, how to communicate with her, and how to administer emergency meds amongst other things.When someone has been found they need to spend time working alongside us and/or the existing PA  and getting to know Pearl, for their peace of mind and ours. As I was increasingly stressed by my caring role I thought it would help to use some of the money for help round the house while the new PA was being found. But no.The system had changed without me being told.This was now a luxury and not allowed. I was a horrible entitled middle class woman for even suggesting it.

It took 6 months to get a new PA up and running alongside our existing (and absolutely marvellous) current PA. During this time the money was beginning to back up.It is absolutely not supposed to do this, because it proves that you probably didn’t need it anyway you grubby little scrounger (sorry I mean valued Carer) The new PA was good, but has not been able to fit her hours around what we need. More money backed up. I’ve been struggling with appointments for all three children and have not had time to source another PA-there is not a one stop PA shop where you can find them.More money backed up.

Pearl attends a residential  at her school  once a week, term time.Paid for by education,it supports her statement.It is awesome (and before you envy my luck it took two years of ‘negotiation’ with the same local authority to get it put in place).One morning while pondering PAs I had a brain wave, perhaps I could use this backlog as a one off, for Pearl to attend a few extra nights at residential? She loves it.As well as working on Activities for Daily Living (washing and dressing to you and me) she has club activities and spends time with her friends. We could afford three extra nights in total.I reckon she could do two nights once a month. the backlog would have been cleared, she would have benefitted, we would have benefitted. Sorted. In principle education would be happy with this, they are not used to billing parents directly, but if my LA gave us the go ahead, as it was effectively a one off they would explore it.

Well,I have to administer the accounts, find the support,pay the wage bills, train, sort contracts, organise liabilities insurance, and keep records.I am not however allowed to come up with ideas because I’m clearly incompetent. A meeting will be held, a panel meeting where this will be proposed. I am not allowed to attend. It’s  not my job and it is likely to be rejected because it’s not usually done.

As a parent this system, designed to support Pearl,has made me feel patronised, unsupported, disempowered. Guilty. Angry. Stressed.Undervalued and misunderstood.

I have to believe this isn’t the LA intention?

So what can be done?

img_4232

Avoid isolating parents.

It  is not enough to have a ‘Parent Partnership’  in existence and then treat parents in day to day transactions like naughty children who cannot be trusted.

Give each parent written instructions of what Direct Payments can be used for.Make it the same for all parents across the county, because do you know what?  We talk to each other.

Give each parent a fixed date annually in advance to produce the paperwork.

Put the use of payments in line with the adult service users agreement.

Give family support workers a clear idea of the system and the ability to implement it.As nothing is set in stone they basically have good intentions and no idea.

Remember that many parents have not had their own business, or worked in management positions,and they are under constant stress and probably functioning in sleep deficit.Give parents support to get the system up and running.

As long as the money is being used for the benefit of the child, ethically and legally let it be used.The system has put in in place because you,LA,recognise support is needed.So support.

One last thing.We know the system is being squeezed, we recognise your jobs are tough and unrewarding, but you get to go home at the end of the day,and retire.

Some of us are in this for the long haul.

 

 

SwanUK                      MN-blognetwork-104-final

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)

fullsizerender-5

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.

MN-blognetwork-104-finalSwanUK