Pearl is currently in transition. In non jargon she has spent half a day at her new school, and today is spending the whole day. The rest of the week, it’s back to Horton for goodbyes, parties and general end of term shenanigans.
I too am in transition.The new school seems really promising, a new start is quite exciting. The holidays are coming, there are still house moving boxes to be unpacked, Pearl has a new set of wheels from wheelchair services.
Last night I dreamt someone told us we couldn’t live in our lovely new house anymore. We went back to the old one, and the new owners had spoilt it, and wouldn’t let us have it back. Then a variety of people I love and respect appeared and told me they hated me. It was one of those nights when I may as well have stayed awake.
When I am very stressed, I get busy. (At one point I was doing three part time jobs and caring for two children with additional needs, plus one with mental health issues) at others I’ll set myself challenges, or overcommit to volunteering.
It works well as a distraction strategy, but it doesn’t actually make the stressful situation go away. If I allow it to, I become totally overstretched and have to drop everything.
It is just possible I am writing a blog a day, to distract myself from the very purpose of writing it.
Pearl is leaving Horton. All the people who have known her for the past 8 years, watched her grow, faciliated her development gone. The staff who encouraged me when I was wrangling with the LA for a place at Kiplings, the people at Kiplings who have washed her, put her in her PJs and tucked her in, will all fade into memory and no longer be part of daily life. Pearl’s marvelous Paediatrician, who has been with us even longer, now works for Staffordshire and has a clinic in Horton. She has listened to me whinge and rail against injustice, provision and NHS shortcomings, and celebrated with me when Horton turned out to be the place, the very place for Pearl. She too will be replaced by someone from our Cheshire, because it makes logistical sense.
I am not good at goodbyes, not good at all, and leaving all these people will be a tremendous wrench.
When my children stay away overnight, I have always put a lipstick kiss on a post it, and written ‘a good night kiss from mummy’.
Just in case I become emotional and rush off on Friday, here Horton is one for you all.
This blog is part of a blog a day for Horton.So far we have raised, through your generosity £390 for the Parent, Friends and Staff Association.To add to the pot and help them provide some extras that make a real difference to the friends of Pearl donate here.
In which Pearl flies through the air with the greatest of ease.
Most primary schools have a school trip, in year 5 or 6. It becomes legendary in the school and is a rite of passage.
Surely a school which caters for children with physical challenges would not be able to do this? These children need wheelchairs, fancy equipment, medication, help washing, changing and dressing, some are fed through tubes .Far safer to keep them at home on familiar territory doing something nice and gentle like painting, or Muti Sensory activities.
If you agree with the previous statement I have failed, in the last few days, to convey the ethos of Horton Lodge Special School. For this I apologize.
As soon as they enter the school this children know about Bendrigg. The big ones go there, assemblies show abseiling, climbing,zip wires, caving.
As a newbie parent at the school, I was astonished.Pearl could never do that! Then I saw videos of some of the least physically able children in the school flying through the air on zip wires, squealing loudly and grinning widely.
And so, as it’s Saturday,and I need to take a small girl to her swimming lesson I’ll say no more, but treat you to some pictures of Action Pearl.
Oh just one more thing, if you donate to the school PFSA ,or have donated, this is one of the things the money will go towards.
The logistics,training and high staff to pupil ration could make Bendrigg prohibitively expensive.The centre itself is charitably funded, but costs to Horton children are kept low by the PFSAs tireless fundraising. If you would like to help some of Pearl’s friends fly through the air next year (and imagine this feeling if you spend most of your time in a wheelchair) please donate any amount, however small here.
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.