Featured

The Wrong Kind of Snow.

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.

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)

 

IMG_0647

 

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.

FullSizeRender-1

 

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

astronomy constellation cosmos dark
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!”

13240649_1321277617888179_4913748902418132136_n

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.

47483_157852777564008_6821741_n
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.

25487403_1912856655396936_7277592187444259917_o

 

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.

img_4704

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

 

16463530_1562524223763516_7927489843266961338_o
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.

IMG_0750

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

 

logo
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.

 

 

This slideshow requires JavaScript.

This blog is part of a blog a day for Horton.Find out more here  Donate to the PFSA here

logo
A blog a day for Horton.

.

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.

 

fullsizerender-6
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.

 

IMG_0647
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.

 

logo
A blog a day for Horton.