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

 

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

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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. 

 

Kiplings

In which Pearl packs up her troubles in an overnight bag and smile, smile, smiles.

Horton Lodge Community Special School is adjacent to Rudyard Lake. If the name Rudyard sounds familiar, it is because two day trippers, John Lockwood Kipling and Alice McDonald, visited and liked it so much when they later married, they named their son for it.

Attached to Horton Lodge  then, is Kiplings, a part of Horton but slightly apart from it too. It offers overnight provision. Horton is not a boarding school, and nobody stays there full time. If Kiplings supports the EHCP of a child, then with the agreement of a panel they can go for one to two nights a week, reviewable every six months. I cannot begin to express how rare this provision is.

I will not go into detail how long it took to get our LA to agree to fund Pearl staying there one night a week, but it was worth the battle.

(For anyone else battling for provision some  phrases such as “equality of opportunity'” and “equality of provision”can be quite useful.  Make sure you support your requests with arguments aimed at the right department, Social Care and Education have separate budgets. Swap the request “I need respite”-not education’s problem – with “she would benefit educationally from…”)

Anyway I digress. Pearl loves Kiplings,they have worked hard on her activities of daily living (much easier in a residential setting) and her independence skills. Also my early concern that she would get out if her bed and try to get in with someone else, was fortunately incorrect..

At Kiplings they have a club, they can choose their own activities, and hang out with their friends. Horton children come school from far and wide and  the chance to go for tea or  have sleepovers with medically complex children just doesn’t arise. (Hence “equality of opportunity”). It is very, very, VERY hard to trust someone with your best beloved (no Rab, no Glory you are ALL my favourites – it’s a nifty little Rudyard Kipling reference) and the chance to be away from a child with additional needs is so very rare, many parents never get it.

Imagine then a child given fantastic care and having fun, in a setting they go to daily, with staff they know and love. Of course Pearl gets educational benefit, of course it supports her  EHCP, but also it gives her the opportunity to do something different without her family, that we can then chat about with the home school book and PODD.

Lastly it helps us. For one night, we can turn our attention to family life, Pearl’s sibs get a look in and I can switch off my hyper vigilance.

On Wednesday, for the very last time Pearl, will set off with her overnight bag for a stay in Kips.

Three cheers then for Kiplings, you know Pearl loves you because she sometimes tries to come across when it’s not her night, you know we appreciate you because we trust you with our precious Pearl, and I know we’ll miss you, because Mr PJ and I are hotfooting  off for the day and staying in a hotel overnight as the chance may never come again ( I do hope I’m joking)

 

This is part of a blog a day for Horton,to donate please click here and leave as little as much as you like.

 

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Splash.

In which water is wet and children are too.

It’s summer in the UK, and rather unusually we seem to be having one. The weather is consistently hot,  but more extraordinarily, consistent.

I love this. Love the heat, love not having to leave the house for a day out with four seasons worth of clothing . Pearl  loves being outside, but actually the heat is more of a trial to her. The extreme temperatures (and apologies to any readers in Australia, to us 28 degrees C is extreme) makes her unpredictable muscles floppy, weak, and well, more unpredictable

Times this by 50 and you have a school full of hot, floppy, grumpy, children.

The Horton Lodge solution?

“Please bring in a change of clothes and a water pistol tomorrow we will be having a water fun day”

Leading to another favourite home-school diary entry.

“We have had a great morning outside in the sun for our school waterfight”

This dear reader is another reason I love Horton.

 

This is part of a blog a day for Horton, which, thanks to reader generosity, has already raised £360 pounds for the Parent Friends and Staff Association.To add to the pot, help keep the school minibuses in good shape, and put money towards future Bendrigg trips you can donate here (don’t be put of by the £10 suggested minimum on the page, give as little or as much as you like!)

 

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A blog a day for Horton