National Health Service.

Huge thanks to our wonderful National Health Service.

After Pearl’s surgery (bilateral submandibular gland removal plus unilateral parotid tie)

I bring you

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Morning update.
1. Pearl slept from 4.30 pm until 10.30pm and then woke up talked and sang for two hours while I tried to encourage her to talk quietly because there was a baby sleeping next to us. Pearl has no volume control. Sadly.

2. At 12.30 she got a bit hyper/agitated/hysterical (probably the GA on its way out of her system) bounced around the bed crashing into the phIals collecting her blood from drains, and bit off the top of her venflon. Bed now looking like a blood bath she promptly fell asleep.

3. At 4.10 am she set off an alarm which made me think she was dead and I woke up and the nurses came running. Pearl who had pulled the end of the monitor off stayed fast asleep.

4. Apparently hospitals do not heat wards at night. I am a fan of saving money and supporting the NHS however I think piping refrigerated air onto sleeping parents probably costs money too.

In summary.

The NHS and Manchester Childrens Hospital in particular is MARVELLOUS.
It is clean the staff are friendly and they have performed an amazing, and I am sure costly operation,swiftly cleanly and efficiently.Their priority at all times has been Pearl. Half hour then hourly obs performed kindly, calmly and with great gentleness.

2. I am a grumpy smelly middle aged woman better suited to a super king sized bed. I will however physically fight anyone who hurts Pearl or tries to remove me from being grumpy and smelly on a camp bed next to her.
So there.

3. It is still possible to put make up on in a dark room with no contact lenses. The intention to groom well is strong in this one. I couldn’t possibly comment on the result .

4. A flannel wash is no way for a grown woman to live.

5.Pearl is doing splendidly and should be home by lunchtime.She is not drooling!

6. I am not omnipresent and find I am unable to both look after Pearl and go to a memory clinic visit with my mum. Now that’s something to remember.

7. Did I mention the NHS? It is AMAZING!

 

 

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Hospital

I’m sitting here beside a sleeping girl, preparing to spend a night on a camp bed.

It’s my fault this surgery.Pearl drools massively and has already tried out a 98% effective tube tie.She was of course the two percent.

Pearl doesn’t have difficulty safely managing her saliva. She doesn’t get chest infections and aspirate her secretions, but she does drool.

Continuously and obviously.she drools Soaking her bibs and clothes rotting through dress fronts and causing other children to shrink away and pull faces.Her lips crack and her face gets sore.

So I told the Surgeon to do everything,all the excisions, extra ties everything do it!!

It would be finally and completely dealt with.

It is the one surgery that I have felt guilty about, because it seems cosmetic.

Drooling does not bother Pearl.In her world where she is self assured and loved and properly aware of her own worth she doesn’t care.

So I made the decision to cut and tie,and channel out and stitch and now she is lying beside me with two drains in her neck utterly exhausted.

I think of all the other Special parents who do this too.

Surgeries, electives, emergencies, sitting calmly by beds watching other parents come in who are terrified of their baby having an anaesthetic for a hernia Do they too feel for the ‘typicals ‘?

I find I want to comfort them at the same time as wanting to shake them and shout “it’s only a hernia and then you get to go home with a normal baby”

It’s not a competition this feeling of pain and trauma,of course their pain is just as real and terrifying as mine.But still.

I sit here,chatting with the staff,explaining Pearl’s problems to them for the millionth time.I intersperse this with careful explanations to Pearl checking she has understood.I’m so calm so professional.

Yesterday I tidied the entire house in the morning and have exercised so much in the last few days that I am quite exhausted.

Yesterday afternoon I was entirely unable to concentrate on anything and had to crash on the sofa watching trash.

But still sat here,writing I look like a woman who is coping. And I am.

And yet.

The desire to run screaming through the hospital is uncomfortably close.

The temptation to creep away and let someone, anyone, cope with making these decisions and dealing daily with the emotional fallout of all it. It’s there.And it’s real.

And so I send good thoughts and hugs and tears and virtual chocolate to everyone of you who sit calmly beside a child hoping that you have made, are making, will make the right decision.

Because you are.You have.And you will.

Nobody said it was easy. Nobody said it could be so hard,

I believe somebody sang that once.

This my friends is what love looks like.

A special shout out to the man who supported me in this decision and struggled with it having to be done because his fathers eye sees only perfection in his small girl.You are an awesome Dad.

Not Safe For Work.

Parenting can leave your personal life in tatters, your emotions wrung out, and as for your libido, well, nuff said.

Being a parent carer of someone with Additional Needs can magnify this, and many relationships buckle under the strain.

Luckily I had the foresight to marry someone 23 years ago who would easily be able to support me on this journey and who I also continue to fancy the pants off. Lucky is the operative word here, how could we possibly know at the tender ages of 25 and 26 what our lives would become? We were babies!

Anyway, that’s not the point. Despite childcare demands and the menopause (and if you are related to me you may want to LOOK.AWAY.NOW) which has had an unexpected effect on my-lets say drive-my body appears to have thrown caution to the wind, aware that reproduction is no longer a threat.

This is a brief explanation of how I nearly managed to scare a Social Services support worker, and how despite being 48 have so far failed to do grown up.

One day, after a run, I returned home glowing, and full of endorphins to an empty house. I was wearing s cute hat stolen from the eldest child (it was winter) and was looking, #imho, pretty fine.

Flinging my clothes off pre shower, I caught a glimpse of myself in the mirror and was happy with what I saw. (Oh if only I appreciated myself as much when I really was glorious in those teenage years before everything became overused and droopy, as I do now in (gulp) middle age.

I digress.
Sexting is really not a thing for my generation (feel free to disagree and share-I dare you!) but for some reason, the endorphins, the cuteness of the hat, the HRT, I felt it would be appropriate to take a cheeky, topless shot. Not totally topless obvs -I was after all wearing a hat! This for the benefit of Father of Pearl. Just to remind him.

Sniggering like the  teenager I never was (my version was sensible and religious) I  fortunately texted him before pressing send.

“Are you on your own I have a picture for you”(winky face)

 

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Panicked reply.

“No,NO.NO I”M NOT I’M IN A MEETING!!!!!!”

Thank you, thank you, God that I had the 48 year old foresight to text ahead, specifically as I had not realized all texts run live down the side of the ridiculously large computer screen in the Blue Beck offices.

As my running high wore off remembered. The cloud! It was a thing! We had it! We all shared it including my teenagers!

Frantic texts followed

“Will that picture be on the cloud? Can the children access  it ?Who can see it????

Shit, shit, shit.

“WILLYOUPLEASERESPONDTOMYTEXTS!!!!”

Anyway it was finally sorted, deleted, cleared normal life resumed. I decided as a passion kindler sexting was not for me.

Back in the real world of additional needs.

Pearl receives direct payments for Personal Assistant employment. Every 6 months or so a Family Support Worker comes to visit to check we are using them appropriately and what’s occurring Chez Pearl.

Pearl had, since her last visit taken part in a play, modelling contract or some-such of which I was inordinately proud.

I sat down next to Mrs Family Support to show her the photos.

Scrolling though as you do (note to self never scroll through photos next to someone. At best it’s boring)  I suddenly appeared. Sans top and plus a rather fetching hat.

I have never ever, ever, swiped a phone so hard or so quickly. A blur (I hoped) of pale flesh. Cheeks on fire, I said, with a nonchalance I did not feel.

“Oh my days what was that? I don’t know what the was !”(nice try Pinocchio)

And then, because I’m a really good parent

“What have those kids been doing with my phone?”

Thus throwing into question my parenting of said teenagers.

Did she see?

Did she know?

What must she of thought?

I think she must have, I think she would have known?!

How did the ****ing photo remain on the ****ing phone when I’d deleted it with such assurance?!

Even my tech guy (and he is good) doesn’t know.

The epilogue to this sorry tale of middle aged desire.

My children have not been removed. My husband thinks I’m hilarious. No teenagers saw anything that would have embarrassed me and mortified them.

Better yet the entire staffing  of Social Services has been restructured and we have a new family support worker.

I am a grown up

I am!

Happy Valentines day to one and all!

 

 

A Chair. With Wheels.

This post was originally shared on Firefly Friends.Hop over there to see a variety of excellent blogs about special needs.

 

A holiday, in Cornwall. Pearl decides to do some beach walking.

Unable to use her trusty kaye walker on the sand she relies on Dad’s hand, stubbornness and occasional crawling.

 

The family become silhouettes on the shoreline, and I am marooned with the new, cumbersome, wheelchair buggy, unwittingly about to take part in a social experiment.

 

The buggy is new, green, and slightly reclining, it also holds weights up to 14 stone.

It’s sunny. The small girl shape on the shoreline is digging. I have a book. So, I sit down on the deckchair substitute I’m minding.

 

Soon I start to feel uncomfortable. I’ve positioned myself just off the main path to the beach, so I can see the sandy explorers, and be as close as possible when Pearl’s energy runs out.

People are passing, as they have been since I arrived. Something however has changed and I’m not sure what.

 

As crowds stream past, adults look over my head, some glance at me and look away as soon as I catch their eyes and smile. Those who do say hello often accompany it with a head tilt, and a mild look of sorrow. I am in direct eye line with sandy dogs and small children, who feel free to stare, but generally return my smiles, even the dogs! (Famously

known for being a bad influence on children and dogs, I tend to over excite both!)

 

A couple my age are struggling up a steep embankment and having difficulty managing the climb, and a lively canine.

 

“Can I help you by holding the dog?” I ask.

 

“No, no, don’t worry we’ll be fine “comes a swift reply.

 

I look at their kind, concerned faces. Then it hits me.

 

I believe I’m sitting in a chair, but all the passersby think it’s a wheelchair. The feeling of dislocation has come from the reactions to a chair and a young(ish) disabled woman.

 

Ouch

 

I think of Pearl, and my best friend who has CP and is a wheelchair user. Do they get this? Every day?

 

I get up to help the dog walkers, who are astonished at my miraculous recovery.

 

This also gives me pause. What if I was an occasional wheelchair user (like Pearl) would people have an opinion on that too? Perhaps think I was inventing a disability`?

 

I chat about this to the dog walkers.

 

“I’m sorry”, he (who incidentally was one of the only people to look me in the eye and grin and greet me when I was in the chair) said.

 

“I just assumed”.

 

I talk about my feelings at swapping places with Pearl and say

 

“I think everyone should be made to sit in a wheelchair in a public place for half an hour it’s been an eye opener”.

 

Ms Dog walker agrees. Her best friend at school had been a wheelchair user, and she’d had a go in her chair.

 

“Didn’t like it, everyone treated me differently and nothing was in my reach or eyeline”

 

Do people look at Pearl like that? Does she notice? I hope not, but being nonverbal and having challenges with her understanding of verbal language, I’m sure she does. She is a very astute reader of body language and facial expression.

 

I would urge anyone to try this. I found the power in an exchange shifted very subtly. I was literally being looked down on. Not only that, but the burden of beginning an interaction, lay with me as people over empathized and felt uncomfortable about how to acknowledge me.

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So to all of us who get around on two feet.

 

No cause for alarm.

 

It’s just a chair. With wheels.

To read other posts on accessibility check out #AccessLinky

 

Goodbye to All That..

This post originally appeared on Firefly at the beginning of the new school term.

 

Hello and congratulations!

Made it through the school holiday?

Feeling smug?

Or, like me utterly exhausted and considering out sourcing your parenting to someone more qualified and altogether calmer?

Is the undoubted joy of handing your child over to someone else, tempered by fear of the consequences?

Then you are probably the parent of a child with additional needs.

Perhaps you love someone spectrumy who is managing in mainstream, but struggles with change and has to enter a new class, with a new time table, and new teachers?

Maybe your small significant other has complex needs and you have to trust someone to keep them safe, well, clean and alive, along with the curriculum?

Do you love someone moving from Mainstream into Special Education, and fear that there will be associated stigma?

Or is your small special person moving into Mainstream?

How do you balance the relief at having time to go to the toilet alone, with the concern that someone else who doesn’t have a parent’s eye is caring for them?

How do you relinquish control?

Pearl is now 11 and has left her beloved Primary School and is heading off somewhere new.

To be honest Pearl, although apprehensive, is excited and looking forward to making friends.

I do however, expect an increase in challenging behaviour and mood swings over the next fortnight.

And Pearl may have some too!

There is always a wistfulness to this time of year.

Taking the dogs out early this morning mist hung in tunnels over the fields.

The blackberries are going over (they have, “the devil’s claw”, an old term I particularly like for the fusty, past their best ones).

There is a feeling of change in the air.

Change of weather, change of season.

Shortening days and cooler nights.

I have been involved in the education system for 45 years, pupil, student, school therapist and mother.

Autumn is intertwined so tightly with the new school year it’s impossible for me to extricate my emotions from the season.

Tomorrow when Pearl puts on her new uniform and gets on a new taxi, to go to a new school I will be tense.

Will they understand her?

Will she fit in?

Will they see how wonderful she is?

Did we choose the right school?

I know I’m not alone.

From experience, I know this season will be replaced by the next, routines will be reestablished, and life will go on.

So fellow travellers, let them leave, take a deep breath, put the kettle on.

 

 

 

 

She’s leaving…

From the old things to the new…

In the last  two weeks, I’ve ranted, remembered and recommended. Thank you for bearing with me.

I am aware that there is a group of people who I have not thanked.

The children of Horton Lodge.

You amazing group of individuals have welcomed me;

“Hello Pearl’s mummy!”

You have made me laugh at your energy and enthusiasm, stunned me with your drive and abilities.

Thank you for letting me see you take first torturous steps with a ladder walker. Thank you for sharing your new found abilities with your electric wheelchair. Thank you for treating me to the sound of your name spoken in your own voice. Thank you for showing me how you can bash that Big Mac button to make your voice heard in assembly. Thank you for letting me, for letting all of us parents, celebrate your achievements with you.

So many of you have shown me so much about joy, frustration, drive, the importance of independence and also of community.  A few of you lived your short lives as part of Horton’s family , and oh, how it hurt our hearts to say goodbye, how we missed you, but how you lived and were loved!

I’m so glad for all of you that you came into Special Education at this time when attitudes are changing technology is widely available and your voices can be heard. They might not be ready for you yet, out there in the non Horton world, they’re a little slow I’m afraid, but you’re coming and they will all have to learn to #bemorehorton and just #reachforthestars

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Photo by Pixabay on Pexels.com

“Don’t believe in all that you’ve been told
The sky’s the limit you can reach your goal
No-one knows just what the future holds
There ain’t nothing you can’t be
There’s a whole world at your feet ”

Songwriters: Cathy Dennis / Andrew Todd
Reach lyrics © Sony/ATV Music Publishing LLC, Universal Music Publishing Group
This is the last in the series of a blog a day for Horton.We have raised nearly £500! to add to the pot and leave the PSFA a fabulous thank you and goodbye donate here

 

 

 

The Way We Were

A stream of Horton consciousness .

Change occurring always opens up a stream of memories of places, people and things.

Today I bring you a stream of Horton consciousness.

The School trip to the Snow Dome in early years. Pearl and I traveled together and arrived early. As we waited she grinned at me and signed vigorously. Although I wasn’t very familiar with Makaton at that stage I knew exactly what it was.

“Yes” I grinned back

“I’m excited too!”

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The Horton fundraising triathlon. All the children swam ,wheeled, walked, stepped. Those who could rode bikes, while others pressed buttons to move a cyclist on the computer. It was done in class teams and while it was another teams turn they were supported with whoops shouts and shakers for encouragement.

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Watch out world,she’s on her way.

 

School plays. This years nativity in which I, Mother of Pearl, was the proud Mama of the Mother of God.

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The environmentalist one about polar bears (!?) where 4 wheelchair users bedecked in Christmas tree lights were by danced by TAs in formation while “Northern Lights” played in the background.I’ve seen some world class theatre and contemporary dance but watching this was right up there.

The fortitude the staff showed one dreadful year when  Horton lost three children with life limiting conditions in two terms.The way they continued while supporting parents and children and managing their own mourning was commendable and impressive.

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A visit from Paralympian Ellie Simmonds,when Pearl was reluctant to return the Olympic gold she’d been allowed to hold.

 

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Thank you Ellie,you don’t want it back do you?

 

The Oscars when children are presented with Oscars for proper achievements like fabulous community spirit and great communication aid use while dressed up for the occasion.

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Oh and the leavers assemblies when the handful of leavers a year are remembered,teased,and commended for simply being who they are, part of Horton family. Huge apologies to the friends whose children left in the last couple of years, I just couldn’t bear to see them go so stayed at home.

I would go on, but now it’s time to go to a leavers assembly I also feel emotional about, although this time staying at home isn’t really an option.

This post is part of a blog a day for Horton.You can donate to help us say thank you here

 

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A blog a day for Horton