An introduction to the trials and tribulations of our family life, additional needs, and unnecessary film and poetry references.
Ten years ago, I was a parent of two children, both bright witty and engaging (obviously). A boy and a girl.
I was also a Professional, a Speech and Language Therapist, I liked Science, investigation and finding answers.
Oh I was a wife as well (still am in fact, apologies Mr Pearlie J)
A control freak, sometime depressive, a Church goer and Christian. A book mad, self deprecating, film loving stereotype. Not very house proud (no change there).
Living in a house of loud opinionated people suited me pretty well, but one amongst us felt the family just wasn’t finished, and as we are both the youngest of three we set to, to complete it.
I’ve worked with various types of acquired and developmental disorders in my job. I never automatically assumed that our children would be perfect, but having produced two who seemed just fine, was fairly laid back about this one.
Besides special children did not happen to people like me. There were none in my circle of friends. When I did see parents of these children they seemed patient, able to cope, well organised. They’d probably chosen, or been chosen, for this path in some mystical way. Also there weren’t that many children like that out there.
Naivety has been an abiding part of my life, a constant course of hilarity amongst my nearest and dearest. I am in fact the person who believed the word gullible had been taken out of the dictionary. I had given birth to a Pearl of a girl at home, with no pain relief (look on my deeds you mighty and despair). Perfect. I had well and truly nailed this parenting lark.
At this point I will introduce you to Pearl. In a family of leaders she is noisy, self assured and communicative. Oh and nonverbal. Did I mention nonverbal? She communicates by pointing, shouting “yeah” or shaking her head and by signing biscuit. Or cake. She shamelessly uses charm, persistence and leadership skills (not bullying obviously) to bend the world around her to her will. Pearl is 9, she dribbles profusely, has learning difficulties. is still in nappies, can’t dress or care for herself, and although she can walk has significant mobility issues and uses a wheelchair or K walker. She has changed everything.
Oh and somebody forgot to tell her she was disabled.
If you have a mind to, stick around and I’ll tell you what we’ve learnt , how to succeed in parenting (hollow laugh) and how to remove chocolate from a wide variety of surfaces.
You’ll laugh. You’ll cry. You’ll hurl .No? Just me then.
Incidentally we have no diagnosis. Just the wrong kind of snow changing our travel plans.
Politics.It’s everywhere.You wait around for a General Election and then two come along in quick succession.
So how do you vote? Follow your family, stick with your tribe? is anything that goes on in Westminster relevant to the daily grind anyway?
Yesterday I was minding my own business, parenting and such like, when politics came up and slapped me hard across the face. I took my son to an assessment to see if he qualifies for PIP.
I’ll explain.Once there was a boy who was little eccentric and rather old fashioned. He muddled along with friends in the school system until Secondary School, or “living hell” as he preferred to call it. Becoming extremely angry with violent outbursts in school, he would tear his clothes swear at teachers and have to be physically restrained.My boy became suicidal, self harming and desperately,desperately sad. Eventually he was removed from school, provided with a tutor for 18 months, and placed in a Special School for children with autistic spectrum disorders.
The boy had secretly been harbouring Asperger’s, and his otherwise remarkable (and modest) mother simply hadn’t noticed it.
The care needs at the time, related to the Asperger’s and his depression,were significant. As a result we received Disability Living Allowance. This was easy to apply for (hollow laugh) and only required the filling in of a colossal form with appended information from all his healthcare team and his educational statement.
When politicians get a bit bored, they look around for something to fix.When they want to impress the voters, they like to show you they are saving you money
For this reason (Insert Fanfare) The PIP or Personal Independence Payment was born! See how it removes the word ‘disability’ from its title replacing it with the hipper “independence’. Marvel as all the disabled people who we all know are ruthlessly draining the countries finances (unlike for example, large coffee chains or internet delivery warehouses) are sorted into “properly disabled” and “scroungers”
Anybody needing assessment will now be assessed by form, frequently followed by a one to one assessment in person, carried out by ATOS. At 16 all current recipients of DLA are also reassessed.
I find myself then, far from home with a young adult on the autistic spectrum, who fears change, gets stressed about meeting new people and has significant sensory issues, related to noise,crowded areas and being assessed.
I have never been anywhere quite like this centre. It is large and clean, and that is truly the only positive thing I can give you.
The chairs are in rows in front of a screen displaying colourful, friendly logos about what the assessment will contain. Despite all this there is the same smell of fear and despair you find in a vets waiting room.
Periodically someone comes and calls out a name, very quietly from the back of the room. It is packed with people waiting with ‘companions’ and we wait for 45 minutes for our turn, at which point we are taken upstairs to a room. There is a stairlift, but we are told that we need to be able to get down the stairs independently in case of fire.
Access wise so far then, we have the difficulty of getting there, the strain of hearing or understanding your name, and the inaccessibility of fire exits. Forgive me if that seems a little peculiar for a place likely to be assessing people with needs, but it is what it is.
Upstairs we meet a perfectly pleasant Health Professional. I do not know what her specialism is, but I suspect it has something to do with form filling and typing. In 45 minutes she questions Aspie boy who is by now, in an extremely agitated state, takes most questions literally and looks more distressed than I have seen him in some time. I have to discuss in front of my mentally fragile young person, the suicidal ideation he suffered, the lack of school support, the Psychiatric input, my locking away of knives and drugs. All this to a stranger we had just met. This does not appear to aid his mental state.
The assessor is supportive and impressed with how far he has come, but has no idea if he will be eligible, having to send the report to the DWP to use as an assessment tool. We have leave to appeal if it doesn’t go our way.
You may glean that I have some problems with this process, how astute of you!
I absolutely believe that governments should be held accountable for how tax payers money is spent. I do think we should minimise fraudulent claims, and encourage independence as far as possible.I suspect that there may be better ways of doing this.
For example, what if the DWP used medical information provided by medics who know the person well? How about school or Psychiatric reports? Does reinventing the wheel and adding another layer of assessment really save money? How much do the centres cost to run, clean, heat staff and light?Is this money offset against the colossal savings made by removing the fraudulent claimsters? Should centres be accessible? Do the Authorities realise that being disabled is not a choice? It does not discriminate. It could be YOU!
I found the whole situation shocking. It felt like a processing plant. It was dehumanising, to see people coming in with crutches and walking frames ready to be assessed to see if they really needed them. It infantilises people, and discredits the existing medical and social care professionals. It breeds the idea of disabled scroungers living off the stage in the public mind, and discourages inclusion as a result.
I want to believe this was not the intention of Government when it was introduced.I truly want to believe that everyone in our society is valued equally. I strongly advice you not to become sick or carelessly acquire a disability.
Please consider this when you vote, but most of all, please vote!
In which turds resolutely remain unpolished, and I buy shares in bleach.
There are some words guaranteed to make a ten year old giggle.This morning Pearl was beside herself because I said knickers; poo and fart have much the same effect.
We are big on toilet talk in our family as an important precursor to actual toilet training success. This post, is not, I’m afraid, a wonderful campaigning post about the necessity of Changing Places important as these undoubtedly are (you can find one of these here). It is instead a further insight into my complete inability to housewife effectively.
After a Bank Holiday weekend of waiting for a very constipated girl to poo, a delightful combination of movicol and mini enemas started things moving (I’ll spare Pearl’s blushes, and it really isn’t her who needs to be embarrassed by this post). If you imagine a coke bottle stuffed full with hard pebbles you can see that neither she nor I had a great deal of fun.
At the end of the weekend, we returned from our caravan of dreams with a huge bag of washing, and a digestive system slowly restoring itself to normal function. Desperate to get ahead of the washing, which was covered in chocolate coloured stains from both ends of Pearl, I merrily loaded my trusty washing machine.
Completing my first wash load, congratulating myself on my ability to restore order from chaos I hung some of Pearl’s lovely new t-shirts up to dry.
This morning the smell of ordure hung heavily in the air. I smelt the beautifully ‘clean’ shirts and gagged slightly. Then I opened the tumble drier to be met by the same smell. Pulling everything out I found what was apparently a piece of dried chocolate biscuit at the bottom of the dryer. Except it was actually a dessicated poo. Oh yes indeed.
Many irritating things have snuck into my wash and caused chaos in the past, tissues, red skirts, asthma inhalers I’ve washed them all in my time-but this was a new experience. After a full and unexpected bleach of the tumble dryer (accompanied by vocalisations of horror and disgust, and the occasional “oh shit, literal shit!) I went for a run to breathe in fresh air and rinse the idea of tumble dried poo from my mind.
Back, full of the smug endorphins that follow a run, I began to hang the washing on the line in the spring sunshine. I was congratulating myself on saving an unpleasant situation with optimism, quick thinking and bonhomie. What a model of resilient good humour I am. If it was possible to receive a Nobel prize for Special Needs Parenting I was surely on the short list. But wait,what was this? A t shirt, fresh smelling,with a huge brown stain on it, surely not more chocolate? Dear reader I was right, it surely was not.
I’ll admit, I have form with faeces. When The Glory was being potty trained, she snuck into our understairs cupboard for some privacy, it was two days before I found a human poo on the floor of said cupboard.
More recently, this winter, with the electric heater on, a nappy disaster featuring a fast moving Pearl and a subsequent poorly anchored nappy tab, lent me the ablity to use the phrase “the shit hits the fan” non figuratively.
Anyway back to today’s disaster. Running (fast) back to the machine I found a poo squidged into the seal, and, dear Lord why had I not noticed this before?-a damp, glistening offering (Bristol Stool Scale 1 ) which had been through an entire 40 degree wash. Reader you may not be able to polish a turd, but I somehow had managed to wash a whole nappies worth, minus the actual nappy.
At times I reflect on the Special Needs journey and wonder how my life would be were I not living the dream. I can tell you that unequivocally there would be less literal shit, and piss taking, although with a family of five of a sarcastic bent, plenty of the metaphorical stuff.
The time I’d saved “getting ahead with the washing” added an hour to my cleaning of the laundry room, an hours 90 degree and bleach cycle, on an empty machine, and rewashing two loads of suspect smelling clothes.
As you can see I’m very efficient (spell check attempted to change this to effluent how apt!) A marvel of time management. Also practical, and pragmatic, having ignored my initial temptation to throw away all the clothes and set fire to the house to clear the smell.
Now the whole sorry episode is over with no one any the wiser. Apart from you, dear reader, and I trust you to take it no further.
In which we make a spontaneous purchase and holiday happily ever after.
It may not be evident from the blog thus far, that I am a bit of an outdoor girl. Much given to running, especially through mud and on hills, and walking, whatever the weather. You may think then, that I am probably a happy camper. What’s not to like about camping? Take yourself wherever you like at a moments notice, pitch up and run, walk, picnic at your leisure. Sorted.
This dear reader is to misunderstand my needs entirely. I exist somewhere between not caring at all what I look like, and never leaving the the house without full make up. I also wear contact lenses. My firm belief, that we as human beings can only live our happy, first world lives due to an amazing sewage system and indoor plumbing, is I’d argue, supported by recent history, and half the world’s first hand experience.
Why you would put yourself under canvas in a field for fun is quite beyond me. Add in a girl with significant learning difficulties, no sense of danger and issues (ahem) with continence and you’ll understand why camping is not on our agenda.
Years ago when Methuselah and I were young, I used to go on holiday in a ‘static’. A Mobile Home that was neither mobile nor homey. It did however have flushing toilets and running water. Big tick.
On a trip to our local Carers Trust funded static, we did not expect much more. How wrong we were. I have lived in much, much, worse permanent housing than this. It had a proper shower! Double glazing! Central Heating! A fitted kitchen which was nicer than the one in my house!
So gentle reader you find me this morning, in the warm, in my PJs with microwaved porridge, a cup of tea and wifi. In my caravan. Reader we bought one.
There is a little corner of North Wales we regularly drove past, rushing to get to Conwy, Snowdonia or Anglesey. It is just over an hour from home, and about 30/40 minutes from all the above. It has one of the most glorious, unspoilt, sections of beach this side of Northumberland and if you are very good I’ll tell you where it is.
On a Friday, when I have wrangled work, rare diseases, Local Authorities, Aspergers, and pre A-level teens all week, we can jump in the car and emerge a little later (approximately 2.5 episodes of the podcast No Such Thing as a Fish) at our own bolt hole. We have three bedrooms, two bathrooms, Netflix, and Broadband. It is the caravan of dreams.
The next morning I can be up, bundled into running clothes or with boots and dog in tow on the beach. I can see sea, a lighthouse, the Great Orme,the Wirral and sometimes Liverpool-although a local tells me if you can see Blackpool Tower clearly it means rain is on the way. Surrounded by sand dunes, unbothered by promenades or piers, this is Talacre Beach, which runs into Gronant Dunes, an SSSI. Talacre itself has a photogenic lighthouse, and a small friendly main drag, basically two small arcades, one shop, a Café, pubs and an awesome baker and ice cream shop. In short everything you need for a proper day at the seaside.
Our caravan (which I should call ‘holiday home’ apparently)is on the lovely Talacre Beach Holiday Park. It is small and friendly too. There are 3 small parks for owners only, and one with holiday rentals. It’s pretty, well landscaped and quiet. There is a bar and restaurant, and if you want bingo and cabaret (we don’t) it’s there. There is the Go Active programme with kids clubs and sports all included if you are an owner. A small, well equipped gym is on site, although personally I’d rather be running on the beach. Pearl’s best place is the bright swimming pool, Father of Pearl and I play tag team in and out of the steam room, sauna and jacuzzi. A modern lodge houses the Tranquility Spa offering beauty treatments from massage to pedicure and back again. It is in fact very heaven.
Talacre appears to have its own microclimate, it’s often sunny when further up the coast it’s raining. We’ve also found that if it’s raining here, Llandudno and Conwy are dry (usually-but remember holidaying in North Wales without waterproofs is just plain foolhardy).
The season is long (March-January) and we have just returned after the winter break. I can’t begin to describe the sigh of relief as we drove onto the park with nothing but a weekend of beach and play ahead of us. Admittedly the seagulls running across the top of the van in the night sound like they wear hobnail boots, but they are a small price to pay for the location and general ambience.
In short we love this place. It has become a proper escape from our messy, appointment filled lives. For some reason the permanent guilt I feel at not theraping Pearl through her every waking moment doesn’t follow us here. I’ll let her watch TV and play on the iPad to her hearts content, knowing that they’ll be enough active and outdoor activities to balance it out. Once every six weeks or so I escape by all by myself for a couple of nights, to walk, read, run and recalibrate. It is bliss.
I would go on, but small dog Herb is scratching at the door and I must go down to the sea again.
If you would like to check out the facilities follow the link here or better still call and speak to Lori Jones, tell her Mother of Pearl, sent you and she’ll arrange a completely obligation free visit to see it all-and show you where the cake shop is!
This blog is a finalist in the BAPS awards (Father of Pearl has been asking friends to vote for his wife’s Baps), promoting blogs about additional needs and parenting. If you would like to vote for us the vote is open for one more week and you can do it here
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.
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.
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?!