The Best Laid Plans.. I

This post originally appeared on Firefly.

My mum has always said that nobody should ever have a first baby. Much better to start with a second when you have all the relevant experience.

In a similar spirit of helpful but impossible advice I offer you a planning schedule recommended to be in place before giving birth to a child with Additional Needs.

 

You are most welcome.

 

Do not have a prior history of depression, or any health needs physical or mental of your own.

You won’t have time for them. No professionals will ever think of asking after your health, so really there’s no point.

 

Knowledge of law or education, preferably to degree level is highly advised. Without these the Local Authority may attempt to tell you that you are not entitled to expensive things, that you really need and actually are.

 

Career ambition for yourself is not necessary, you will be required to cancel meetings, work days and other plans at the drop of hat to fit in appointments, which mysteriously seem to congregate together within a fortnight. You can of course cancel and rebook, but that risks being labelled a difficult parent. It won’t be written anywhere, but everyone will know you are.

 

Ambition generally is a dangerous thing, imagining you could go out alone or with a partner is optimistic, on some days going to the toilet alone will be completely beyond your capability. Believing your child deserves a place in society is also problematic. Being prepared to settle for less can lead to reduced emotional stress and, therefore, peace.

 

An independent income, preferably from a Trust Fund or inherited wealth will make your life easier and less of a drain on the state. It also ensures that you don’t have to discuss your family’s difficulties or finances with well-intentioned Charities. Think of the time you could save writing crowd funding requests!

 

Ensure that you are a very young parent, in peak physical condition and that this is your only child.

 

Be certain that you are an older parent that cares less and that this is at least your second child.

 

Be in an extremely stable relationship with a healthy, resourceful and emotionally aware partner.

 

Be a single parent with an incredibly supportive family and friends, you don’t have time for a relationship anyway.

 

Ensure your house is on one level with total accessibility to all rooms and hoists. You may not need them now but plan ahead.

 

Nurture friendships with young, fun but responsible people who can drive, and display a maturity beyond their years, not for themselves, you understand, but they have Personal Assistant potential.

 

Test your remaining friends by constantly cancelling plans at the last minute and taking weeks to respond to their texts. If they don’t like it, you may as well ditch them now.

 

 

 

This then is my recommendation to you. I myself have opted for the all the gear and no idea approach to special needs parenting. On most days I actually seem like I know what I’m doing, on others-well there’s always cake and cynicism.

 

To finish I’ll share another gem from the mothership. She has always maintained that no matter how you parent, or what mistakes you make, as long as there is love in your home everything else will smooth itself out. And, in this at least, I think she’s right

 

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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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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.

 

 

 

 

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

 

Also Known As..

In which the Glory enters the hallowed halls of Horton, and leaves me with a lasting impression.

As the Glory, back from University pads into the kitchen to make a cup of tea I complain.

“Now I’ve got to write another blog and schedule it for tomorrow ‘cos I’ll be too busy”

“Write one about me!” she exclaims.

During Year 9 all students have to do work experience. Anxiety was beginning to bite The Glory of the Clan, and she was quite unable to decide what to do. As she was considering Medicine or something related at the time, I suggested Horton, as long as she was not in the same class as Pearl.

A week with the Early Years followed.

“What did you do today?” I asked.

“Oh something really excellent, with the sensory group. They lay down and we played chimes music, and touched them with feathers and stroked them, and did some massage too-they loved it, it was called TacPac”

“What does that stand for” asked the ever curious parent.

“I don’t know”

I’ll just explain, that we have always played word games, in our family, making up phrases from number plates or abbreviations.

“Probably Tap a Child Poke a Child” says she.

And in our house that’s what it has been ever since.

I leave you with some incredible art work, from my talented daughter-sorry Oh Glorious One, but it is Pearl’s blog really.

 

 

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