Tag: emotion

Ch – ch – ch – ch – Changes.

Time may change me, but I can’t trace time.

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.

 

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All the feels, just all of them.

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.

 

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A thank you kiss from Mother of Pearl

 

 

 

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.

 

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A blog a day for Horton. 

 

Seasons of Change

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

This post appeared  before the summer holiday, on Huffpost

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And then I wake up.

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

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

Summers of the future shimmering in the distance.

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

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

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

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

 

 

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

 

Caravan.

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.

 

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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.

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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.

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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.

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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.

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A boy, a beach, a sunset and Pokemon Go. Sorted.

 

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

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Zen and the Art of Extreme Parenting.

In which I wake up crying, and try to put it into words.

As you have been graciously following the inane ramblings of a parent carer, I thought you may like to join me on the next stage – how to stay calm while dealing with extreme  pressure to parent fully and effectively.

I have recently become interested in extreme sports and have been considering amazing feats of daring-do and endurance. Maybe this is an age thing (46 as our local paper was keen to pointlessly share) or maybe it’s a growing awareness that life is short.

I suspect it is more to do with the fact that jumping off the side of a bridge attached to an elastic seems a great deal easier than parenting my three children.

Before I start, can I just say that parenting is difficult. All parenting is difficult. Childcare is difficult. It can be tricky, keeping small people safe let alone moulding them into useful and delightful members of society. It can be boring. Anybody who has watched  a friend who is a party loving wild child turn into an exhausted zombie, unable to stay awake after 7.30pm, will know what a baby can do to a person.

My personal view is that if you get to the end of a day, haven’t killed,maimed or lost anyone and  you’ve all been fed, you are a successful parent. If the house is clean and tidy that’s a bonus. If you have completed an improving craft activity with child/children you deserve a medal. If you have managed to arrange some lemons in a ceramic dish, photograph it and put it on Instagram, you probably need professional help.

Let me tell you what parenting in extremis looks like. In my case, qualifying as an extreme parent, includes a preexisting tendency to depression, which is largely managed with careful monitoring. Add a lack of sleep, and constant physical exertion, so that you no longer have the mental resources to carry that monitoring out.

You will be responsible for a small non verbal person, with physical and some health and behavioural issues. (Let’s call her Pearl) She will be prepubescent and in thrall to hormones that she cannot understand or explain. As well as this you will have a filing cabinet (or two) of information on her to keep up to date and in order. Somehow you will also have the role of coordinating all her care, and communicating across disciplines.You may have a Family Support Worker who has roles that don’t appear to match her title, and both she and you are not certain of what they are. Social care ‘support’ will make you want to cry. You will have to travel across counties and sometimes at short notice to a vast array of appointments. You will absolutely not be able to keep up your professional role, and end up doing your husbands admin with a very bad grace.

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You will also be responsible for a 15 year old male of the species. He will cleverly have been harbouring Asperger’s Syndrome until the age of 11. There will have been many signs of this scattered liberally through his life, but as you are busy  extreme parenting the small person, you haven’t noticed. You will continue not noticing until he becomes suicidal at the age of 11, and is advised to leave school at the age of thirteen. You will be expected to deal with having a very sad stressed person at home for 18 months while receiving minimal support. You will lock up all the knives and medication,and live in a state of hypervigilism, realising that the one thing you want for your children, that they would be happy, is not under your control. You,my friend will have to deal with an extraordinarily unhelpful and overstretched CAMHS department, find a new school and ask for  one of the first EHC in the LA (and country). You will learn about autism, watch him become well adjusted and in tune with himself, and try to hold your nerve while he wants to move back into the very mainstream setting which caused him pain, for his A levels.

You now have to guide an 18 year old female, who has taken it upon herself to be The Glory of the clan, through extreme social anxiety, watch as she refuses all help and begins to spiral downwards into depression. At this stage base jumping looks like a walk in the park. Offering support while also giving her room to make her own choices, pushing her academically while recognising that her mental health being stable is so much more important, will be the most difficult balancing act you have embarked on. Her school will be limited in the support it can offer, counselling will be in short supply and variable, and CAMHS, well you have seen the help they offer already.

When you wake up in the morning wanting to cry, out of touch with your own needs and feeling that you, and you alone have caused this myriad of difficulties take heart. In your dreams you may have been a more, Little House on the Prairie type parent. Remember Laura Ingalls running through a sunny field? Do you also remember the lack of running water, decent sanitation and washing machine?

I see you, fellow extreme parents. I see you and weep for you, for your situation, and for the poor and patchy support you are receiving in your taxing, thankless dirty, painful jobs. I have had coffee with some of you, and railed against the system and your situations. I have lost sleep over a country that prioritises academic achievement over the good mental health of its children, and who makes accessing support so difficult that some of you just give up asking.

An older woman of my aquaintance told me that love covers everything, and smooths out any parenting mistakes you may make. I hope she’s right.

So, if you like me have accidentally become an extreme parent what do you do? I expect you are waiting for the Zen moment? I’ll let you know.In the meantime I’ll try to practice Pearlfulness TM and be grateful for Gilmour Girls on Netflix.

 

SwanUK        MN-blognetwork-104-final

 

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

 

Echoes

In which the past though a foreign country, suddenly hijacks me on the Millennium Bridge.

There was a road that led home from my school, a long endless road it seemed to me, although I was much smaller, and my legs much shorter. I walked home down this road every day from the ages of 5 ’til 18, often twice a day when I went home for lunch.

I remember small girls thoughts inside my head. Would I always be walking here?  Did the Jane of yesterday and the Jane of tomorrow walk along here at the same time as me?  Could I one day bump into myself?  ( I was a solitary bookish child).

I recalled this when I hijacked a works trip to London with Father of Pearl.  London was so close to my Essex home, that school trips, gallery visits and teenage forays all started at Liverpool Street station. F o P dashed off to his meeting while I moseyed over the millennium bridge to catch a tube to the V & A.  I found myself face to face with St Pauls, and wondered if a primary aged Jane crept around the whispering gallery, awed, excited, nervous.

I stride, child free and grinning from ear to ear over the Millennium bridge. Briefly I was taken aback and wondered if small girl Jane would believe the world of wheelchairs, special schools and endless fights she would grow up into. Before  I had a chance to feel the sad longing for a ‘normal’ life I remembered.

I remembered the quiet serious, bookish child, who struggled to fit in. The girl who was concerned to keep the peace so her poorly Daddy wasn’t worried into hospital with an asthma attack. The teenager who always wore the wrong clothes, bought at the wrong shops and who was declared” the frumpiest girl in the school” (oh how we laughed) The sixth former who on a trip to this very London threw up in Covent Garden (something I ate?  Nerves? I’ll never know) which triggered a two year battle with an eating disorder which seemed would make her fade away.

And then I think of my ‘non typical ‘ life the profession I had to give up, the hospital appointments, statement reviews and filing cabinets of reports. The tired days the worried nights, and I catch myself.

I’m happy (and well medicated) confident, loved and in love, with life my jumbley, surprising, unexpected children, my fabulous Northern powerhouse of a husband, with this London – and with myself. Truly. And I remember that the solitary, serious Jane always had a huge capacity to love and was always loved in return.

So unexpected though my life has been would I change it? Well some days, yes. On the mornings I wake dreaming Pearl has started to speak I will always feel an aching and a longing.

I bend down and whisper to the skipping infant aged Jane ” it’s going to be alright”.