In which I, the Broad in question, dispense advice in a thoughtful and non hysterical fashion.Yeah right.
This post was initially published on Firefly Community. You can find the original here
As part of an occasional series designed to make you feel better about yourself I bring you:
Things I have done and regretted, to save you the bother of trying them.
If you too are attempting to juggle a career, various pets and an assortment of non-typical children, you probably find yourself at the bottom of the pile.
‘Me time’ may involve going for a quick wee.
It is l worthwhile making time for yourself, but keep your eyes open, your wits about you, forward plan and be aware of your environment. If not,you may find yourself:
Brushing your teeth with Savlon.
It is in a blue toothpaste like tube, it squeezes out onto your toothbrush in a white toothpaste like way. It is NOT however, nor does it taste like toothpaste. Despite probably making your mouth antiseptic and germ free it leaves your teeth feeling furry, like a bad hangover. Not one to try.
Applying Sudocrem to a small persons nether regions and leaving it in reaching distance.
The bonus of this is a quick indication of how far said small persons fine motor control, reaching balance and general determination has progressed, not easily measured on a standardized developmental scale.
The flip side is having to remove the zinc based white substance from the individual’s (let’s call her Pearl) hair, eyes nose and all furnishings and room décor.
On the last occasion (no I don’t learn from my own advice, yes it has happened more that once)Pearl went to school with the pallor and demeanor of a cheerful eleven year old Goth.
Putting Contact Lenses in without fully rinsing the soap from your hands.
From a distance it probably looked like I had perfected a new hip hop dance style, followed by a sudden realization of my own mortality and prolonged weeping.
Apologising for things done or requested
It weakens your case and is often a female default. Think, would a man do that? No? Then don’t. People may call you bossy rather than assertive, but frankly who cares?
Caring too much.
Not about your significant others, or your non typical offspring but worrying about what people think of you, your face, your hair, your opinion your child’s screaming.
Try not to wait until the advanced age of 47 to stop caring about these things. It’s a waste of time, you cannot control what people think of you, and chances are it’s not even what imagine.
Generally speaking I couldn’t give a F**.. fig (obvs)
(See also taking yourself too seriously)
(although not your opinion which is valid and you are entitled to)
In Conclusion.
Life is too short to:
Drink bad coffee
Completely avoid sugar
Spend time with people who don’t get you
Persevere with therapies that make you or the child miserable
Or eat olives (that might just be me)
Please feel free to step lightly into the carefree future.
In which I review my favourite inspirational messages-and a fair few that just don’t make the grade.
This post originally appeared on Firefly Community and can be viewed here
Inspirational quotes, you know the ones. They pop up on your face book feed with a beautiful picture of a sunset, someone climbing a mountain, or jumping in the air with pure joy. They are a mixed blessing. Some can really resonate, a quote from an author, a word of scripture from a holy book. Some can irritate. Some are just plain wrong, I’m pretty sure that Winnie the Pooh didn’t make the “I have a dream” speech, and the things that Oscar Wilde reportedly said, well just don’t get me started.
Hand in hand with this come the helpful little phrases people choose to share with parents of children with additional needs. Most of this comes from the right place, although “God only gives special children to special parents” should be shoved somewhere else altogether.
I have compiled, for your reading pleasure a short summary of some of the most common. You probably have some favourites of your own. If any come to mind that help you/make you want to punch somebody please share with the community below the line!
Don’t sweat the small stuff, and it’s all small stuff.
In parenting a child with disabilities, as in life generally, this is not entirely true.
We brush up against mortality, severe illness, pain and struggle on a regular basis, plus the big questions of faith, meaning, love and loss. It’s not all small stuff.
Whether you have enough likes on your Facebook Page, if you have sent a birthday card a bit late, if your house is a bit untidy this my friend is the small stuff. You have my permission not to sweat it.
What doesn’t kill you makes you stronger.
This has always been one of my favourites. However now I wonder whether to replace it with
“what doesn’t kill you makes you exhausted, sleep deprived, Clinically Depressed, the possessor of a fierce and dark humour, snappy and reliant on alcohol”
Self-care suggests the first reading is preferable. On the days where the second is more accurate be kind to yourself.
Which brings us neatly to
Be kind for everyone is fighting a hard battle.
You my fellow parent, if you care for a child with additional needs you are fighting a hard battle. The person who has parked in a disabled space with no badge, I have less sympathy for.
The Local Authority responsible for providing care and support for you, your family and your child? Well they are paid, and should be working on your behalf.
For most special parents this could be adapted to Be Kind for everybody is fighting a hard battle with the Local Authority. It shouldn’t be accurate but there we are.
What cannot be cured must be endured
Must it? Well in reality yes, and emotional resilience, the ability to bounce back and keep on keeping on is useful tool in the special parents armour. I would argue however that you need to find people who get you, family friends, parents in the same position, so you can endure it with a better grace together. It may be that you can (whisper it quietly) even enjoy it!
I will leave you with my current personal favourite, which happens to be biblical but I think describes us, our children and our struggles well no matter what beliefs we do or do not have.
But we have this treasure in jars of clay
We are afflicted in every way, but not crushed; perplexed, but not driven to despair, persecuted, but not forsaken, struck down, but not destroyed.
As I frequently find myself perplexed, despairing and feeling forsaken this curiously helps me. Despite all this I am a treasure in my 47 year old body, as is my beauteous daughter in her tricky, muscle weakend, wobbly, treacherous, one.
We are all the same no matter what our abilities or disabilities and that,to me is rather wonderful..
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.
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
I’m not sure this was exactly what Mum on a Missionhad in mind when she set day 2 of #30daySEND bloggers challenge. I know she has an excellent campaigning blog in mind, but I’m feeling egocentric-so settle down, or switch off as the mood takes you. If you find you already did know them, consider yourself one of the inner circle. Welcome to my world.
1. I judge people on coffee. I’m very polite, you’d never know. Instant coffee is NOT coffee. Similarly decaffienated-what’s that all about then?
2. I love antique and vintage things. Before blogging I had a little Vintage business Pearlie Queen Collectables (that child gets everywhere) selling homewares and decorative glass and ceramics.(Oh and owls.That is a whole other story) My eldest used to help and we sold at fairs and markets always dressed up vintagely.
3. I was a committed Christian. I think I still might be. Since Pearl, I have had a real struggle over faith, meaning and the purpose of life. It all appears to me to be very random, and some of the things said to me about healing, strength and being a special parent really haven’t helped. Still on a bit of a journey of discovery on this one. Suspect most of us are.
4. I worry. All the time
About money. We are in a very fortunate position, but are both employed by my husbands business. What if it fails?
About health. What if I die or become really ill? What if the Mister does? Who will care for a small special Pearl?
About the future, do I have the stamina to care in the long term?
About Pearl’s health, what if the epilepsy gets worse? What if her mobility deteriorates?
5. I can’t bear people making assumptions about me based on my appearance, gender,accent, politics or beliefs. I can become quite aggressive if I see someone doing this to someone else too. I try very hard to rein in my own assumptions when meeting others, and make every effort to notice those I do make. Unless I see someone drinking decaf instant coffee, then all bets are off.
6. I have a tendency towarsds depression. It’s hideous when it’s here, but it is possible to live with it, and I have had plenty of practice. I believe in Citalopram, exercise and occasional hibernation.You absolutely do not have to be afraid of me because of this, I am a master of disguise, with a well chosen outfit, the right amount of slap, and an impressive smile you would be none the wiser.
7. I am a little bit obsessed with clothes. And styling. And design. And handbags. Oh and shoes. It’s getting worse as I get older. If I see a stylish soul out and about I compliment them. Complete strangers. Mainly people are delighted, except my teenage daughter, who if with me, is mortified especially when it’s her friends I’m complimenting.
8. I am tired and emotionally wrung out much of the time.
Tired of fighting the system for provision that is necessity not luxury.
Tired of wrangling a small girl who can’t bear the ordinary routine of dressing, tooth brushing, and washing.
Tired of the smell of nappies in the house.
Tired of handling people’s stares going out.
Tired most of all of being patient, understanding and reasonable. Surely it is my turn to have a meltdown in public?
I am basically tired of being the grown up and would like someone else to take a shift.
9. I love to laugh. Generally,despite everything I find life to be lovely, people to be fabulous and nearly every situation potentially hilarious. Unless the black dog is visiting obviously and then-well more if that on a future blog.
10. I hate waste. Medicines that have not been opened or used have to be thrown away?Really? Splints that have been grown out of into landfill? In ‘Austerity Britain’? This does not sit well with me.
10.5 ( Oh go on, humour me) I think T.K.Maxx should be offered on prescription:
“take 2 hours browsing at least once a month. In emergency cases of extreme fed-upness enter immediately and do not leave without an unnecessary tea towel or mug.”
True Story.
I leave you with a picture of a Radley Handbag I bought from a charity shop, neatly encapsulating points seven and ten.
You are most welcome.
Why not check out other fabulous SEND bloggers on Firefly Community? Join in, comment and take part!
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.
“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.
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.
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?
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.
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.
Pimp your hot chocolate with popcorn.
Be brave and believe in yourself.Standing behind Pearl watching her walk is a marvel. Her centre of gravity is all wrong, her gait defies convention, and her feet strike the ground in odd places and at different levels.This may put you off considering walking on a wall, trying steps, or Parkour on the sofas. This may be wise, but sometimes being sensible can seriously cramp your style. I have learnt from Pearl to give it a go, push yourself, try something tricky and new. A can do attitude could take you into a whole new area of interest.
Be determined. Pearl’s school runs on Conductive Education principles. Movements are repeated, over and over again,and reinforced by song. I have seen the look on the children’s faces as they carry out “task series” The other place I have seen this expression is the faces of Olympic Athletes, and Wimbledon Champions.If you want to achieve something you need some of this.
Lastly, sing everything. Conductive Education has a ‘hello’ song,a ‘potty’ song, greetings song and standing songs. Not only is this immeasurably cheering, it will lead you to believe you too have the glamour and panache of the late, great, Debbie Reynolds. As a side effect it seriously embarrasses any teenagers you are related to if continued in public.This is always a bonus.
Like any regime, if overdone this has drawbacks.Biting people who irritate you is never recommended and the legal liability of such actions remains yours, and not the responsibility of Pearlfulness TM. Approaching attractive strangers and stroking their legs, may increase your vulnerability to exploitation and seriously embarrass your companion.You have been warned.
The most important message of Pearlfulness TM.is enjoy life as much as you can,at whatever level you can, whenever you can.Life is not only there to be lived and grasped by the pert,privileged,perfect, young or famous, it is for all of us, and it is short. Pearl has lost many peers in her young life and none of us know how long we have.
Her message to you in the face of political upheaval,emotional uncertainty and physical difficulty is that you, yes, YOU are fearfully and wonderfully made, a little bit fabulous and definitely worth it.
If all else fails Be Kind. Eat Cake.
*Have I really trademarked this? Oh come on-what do you think?!
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.
The Wrong Kind of Snow 