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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.

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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A blog a day for Horton

 

 

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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Adventure Time.

In which Pearl flies through the air with the greatest of ease.

Most primary schools have a school trip, in year 5 or 6. It becomes legendary in the school and is a rite of passage.

Surely a school which caters for children with physical challenges would not be able to do this? These children need wheelchairs,  fancy equipment, medication, help washing, changing and dressing, some are fed through tubes .Far safer to keep them at home on familiar territory doing something nice and gentle like painting, or Muti Sensory activities.

If you agree with the previous statement I have failed, in the last few days, to convey the ethos of Horton Lodge Special School. For this I apologize.

I give you…..Bendrigg.

As soon as they enter the school this children know about Bendrigg. The big ones go there,  assemblies show abseiling, climbing,zip wires, caving.

As a newbie parent at the school, I was astonished.Pearl could never do that! Then I saw videos of some of the least physically able children in the school flying through the air on zip wires, squealing loudly and grinning widely.

And so, as it’s Saturday,and I need to take a small girl to her swimming lesson I’ll say no more, but treat you to some pictures of Action Pearl.

Oh just one more thing, if  you donate to the school PFSA ,or have donated, this is one of the things the money will go towards.

The logistics,training and high staff to pupil ration could make Bendrigg prohibitively expensive.The centre itself is charitably funded, but costs to Horton children are kept low by the PFSAs tireless fundraising. If you would like to help some of Pearl’s friends fly through the air next year (and imagine this feeling if you spend most of your time in a wheelchair) please donate any amount,  however small here.

 

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Important practice for being in small spaces before caving.

 

 

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I know tI couldn’t do this,She went in in her wheelchair, but the spirit of adventure is strong in this one.

 

 

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A brave face here,I saw the video, she was a bit scared at the top.
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Messing about in boats.
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Action Pearl.

 

 

 

 

 

This is part of a blog a day for Horton.

 

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A blog a day for Horton

 

Help?!

In which help is required, and two schools take very different approaches to providing it.

We don’t do neurotypical in my family. As well as Pearl, we also have a son with Aspergers. It’s fair to say our school experiences with him have not always been positive.

Differences were apparent throughout Primary school, but as he hit year 6 and the pointless SATs, his stress levels began to rise exponentially.

His school had just been through a particularly unpleasant Ofsted inspection, and as a result staff stress was high, and the pressure to ensure all achieved, made the tests much more of a focus than they had previously been.

Rab (as he is known in the blogosphere) was having ‘tantrums’ (yes, before diagnosis we thought he was acting up) and was becoming very sad and withdrawn. He also experienced frequent stomach aches.

Busy with Pearl I had put Rab’s previous anxieties down to being a sensitive soul and mildly eccentric (oh my boy I’m sorry) I had not realized that the daily trauma of trying to fit into a neurototypical world, was frazzling his autistic sensibilities.

Finally as depression began to bite him and suicidal ideas were voiced I took him to the GP.  Twice. And was told twice, that I was overmedicalising the situation.

I do hope the fact that I’m known to live with depression did not cause our splendid GPs to feel I was over reacting. I do hope so. They told me he could be refereed to CAMHS but the service was so busy I probably wouldn’t get an appointment, and that the referral needed to come via school.

Some background. At this point I had had children at this excellent primary for 9 years. I loved it. I had been Chair of Governors and knew the staff. School had participated in a study Rab had been part of when he had been diagnosed with anxiety disorder. I asked his class teacher if she would refer to CAMHS with the help of the school nurse.Transition to High School was approaching. The holidays were looming and I was very, very concerned. I needed help.

On the very last day of school, having heard nothing, and assuming it was all in hand,  I asked the class teacher,

“have you heard anything from CAMHS?”

“I’ve discussed it with the Head who feels it would be better coming from his High School”

The High School that hadn’t met him, that did not know his peculiarities and strengths had not seen his ‘tantrums’ in action.

I share this, not to shame the school. It was otherwise excellent. I think in retrospect, Ofsted stress and end of term frenzy all played a part. I also think they had a lot of work to do on training and awareness of Special Needs in  general and Autism in particular, which I’m sure has since happened,  as they have an experienced  Governing Body and a new Senior Leadership Team.

No. I share this in order to show you what busy, overstretched schools are often like, taken up by all the gubbins that Government throws at them, and the admin required more related to school performance than pupil (and teacher) satisfaction.

And now I give you the alternative.

This Monday we had an excellent morning in Horton watching Pearl and her class mates swim, before witnessing the opening of the new school swimming hoist! (Things are a little different in Special Ed! ).

As I left I was grabbed by one of the staff, not Pearl’s teacher, and who in fact has never taught Pearl, although she enjoyed a weeks residential at an outward bound centre (more of this tomorrow!). Pearl is an experienced user of the PODD communication system.

 

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In PODD we trust.

“Jane”

Said this astute individual.

“I’ve been watching Pearl use PODD and I think she is ready for a more high tech version-what do you think?”

Chat followed, and we both agreed.

“Well then, I’ll refer her on to the Specialist Centre, we’ll do it now because we have all the information from knowing Pearl. It  will take High School a while to see how she communicates, but we already know”

Two schools both excellent.

One with Classe of 30 +  can’t take the extra work and hasn’t spotted an issue.

Another with high staff to pupil ratio, and freed  to think inventively about achieving curriculum  goals has volunteered information based on  pupil observation, and initiated extra work under pressure at a busy time.

All I can say is that if I was a teacher, given the choice, I’d work in Special Ed.

If I ran the Government (and frankly I’m a little too busy to take it on)  all schools would have a diversified curriculum and measuring and testing would have low priority at Primary level.

I suspect that pupil mental health would be positively impacted, and teacher burn out greatly reduced.

But what do I know? I’m only a mother.

Come on Secretary of State for Education, lets all #bemorehorton.

 

This is part of a blog a day for Horton.Any opinions are the authors  and does not necessarily reflect those of the school.

Help Pearl leave Horton Lodge PFSA a huge thank you, here.

 

 

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Omm….

In which a group of over excited children fail to spot the difference between yoga and sardines.

Yoga, once a spiritual exercise, has been widely embraced for its calming and mindful effects.

Horton Lodge has a simple but very effective way of communicating what happens in the day, a home school book. Filled in daily by the teaching and support staff, and also used by school nurses and therapists, it is pounced on daily in our house. Pearl is non verbal, so when I have read it we can talk about the day, with the help of the excellent PODD.

I have had a few favourite entries, but by far the most hilarious read:

“Today we started our yoga sessions.We spent the first remembering to stay in our own space on the mat”

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Photo by Burst on Pexels.com

 

Maybe it’s having worked in schools, perhaps it’s because Pearl is my third, but I could hear a world of patience, pain,and mild hysteria emanating from this simple sentence.

The next day was parents evening.

“So” I said.

“How was yoga, did they stay on the mats?”

The class teacher grinned broadly.

“Well we are using a DVD and the whole class (about 8 children of varying physical ability) made for the mat nearest the DVD and lay on top of each other in a big pile”

Now I go to a restorative yoga session every Friday. It calms me, grounds me,and helps me prepare for the whirlwind that is Pearl being home at the weekend. Because of this diary entry,dear reader, at the beginning of my weekly session,as I start to relax I hear in my head “remember to stay in your own place on the mat” and shake silently at the mental image it conjures up.

Namaste.

 

This is part of a blog a day for Horton.You can find out more about the school here .and help Pearl show her appreciation with a donation here.

 

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A blog a day for Horton

 

Society.

In which I propose we all be more Horton.

So here we are a bunch of sentient animals muddling along on a small blue planet. To help us pass the time, we make rules, create leaders and invent cultures.

After countless centuries of development what have we achieved on our small island?(The UK to you and me).

Fire.

The wheel.

Art, written language, the printing press, literature, public sanitation; these are all great things.

Public services, the NHS,  free education. Simply splendid.

Democracy, Government, local and national, to help manage the money system we created. Generally these things should enable us to live comfortably and safely with our neighbours. On the whole they do.

Inequality still exists on a huge scale, and without becoming too political is largely the result of the capitalist system we’ve chosen to live by. (Which is remember only a concept we invented).

As a model of where our values should lie I give you…

Horton Lodge Community Special School!

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Achievements are celebrated.

People help each other.

Elders impart knowledge to the next generation, keep them safe from harm and teach them the right way to be part of a wider group.

The more vulnerable are given extra help, but are also helped to use everything they have to give back to the community in whatever way they can.

Individuals within the community have a clear sense of their own self worth and how they fit into the wider community.

And when children leave education….

I fear they come up against historic prejudices about disability and cognitive difference.

They may hear labels used to describe them that are not life affirming.

As they are often unable to earn, they are often treated like a burden to the wider community and State.

They are treated like second class citizens.

There is no public moral outrage when they die in care or in the Health Service, their needs are sidelined because their own intrinsic worth to all of us is not recognized by the “Big Society”

They can’t use toilet facilities as they are not routinely provided for those who need Changing Places.

Poor access on public transport and in towns limits and isolates.

People do not help each other.

In short they are disabled by society.

Shame on us. Shame on our leaders. Shame on us all for allowing this to happen.

Being encouraged, helping each other, being kind, making paths straight for the road ahead, these are the basic requirements of a fair and just society.  If they are not followed we all suffer.

Tell them. Tell our leaders, tell each other.

Be kind.

Value peoples talents.

Do not judge an individuals worth on ability to earn.

Practice Pearlfulness be kind eat cake.

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Be more Horton.

This blog is part of  blog a day for Horton. You can donate here.

 

 

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Questions. Questions?

In which we impart the amazing truth that SEND children do receive an education!

When you fall pregnant, people ask you extraordinary questions. “Was it planned?” was perhaps the most insensitive, but if that baby has a disability or other needs peoples self monitoring really takes your breath away.

Thus, on a weekday in term time I am regularly asked “where’s Pearl?”

I know I’m not alone in this, and I can’t quite work out why.

Perhaps the wider public only see SEND children “in extremis”on DIY SOS or Children in Need. Maybe they think that these children are ill, lying in invalid chairs, and being kept out of the sun? Or are they permanently hospitalized? Seems unlikely that they believe that Pearl is at home with me, while I home educate her, as it must be obvious I have the patience of a dead hedgehog.

I’ll let you all in to a little secret, you may not see Pearl in the local primary, but that is because  she is busy honing her leadership skills at her excellent special school Horton Lodge.

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Children with additional needs are in fact children too! Who knew ? They laugh, cry and demand attention just like their  neurotypical friends, and like them, they mainly go to school! They may miss more lessons because of medical appointments, they may fall ill more often, and more severely. When they are well, off to school they go. It is (as I told my older two when they didn’t want to go in) the law of the land.

Historically Special Schools kept children occupied during the day, the best obviously achieved more, but expectations were not high.

Several decades ago, during my SALT training, schools were separated into Moderate Learning  Difficulties, Severe Learning Difficulties and Physically Handicapped.

Shortly after this integration became the gold standard and many specialist special schools were closed to allow people to be taught together in mainstream. Unfortunately integration without extra money or training often led to lip service being given to integration, while pupils were isolated in a separate room with a TA. Generic special schools began to cater for the more complex children,and now specialist provision for autism is also on the rise.

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What does this tell us about Special Education? Well, like general educational provision it is ruled by the will and whim of the political elite, and similarly affected by lack of resources. Special Schools require Ofsted reports and a Governing Body. They too can become Academies, and also follow the National Curriculum.

BUT, and here’s the thing, they follow a diversified, enriched curriculum.The subject headings are the same, but the means of covering them, and the level at which they are covered, is guided by the individual learners ability and style of learning.

It could be argued that all teachers should be able to do this, and that education should be an enjoyable, enriching path to a lifetimes learning, but that dear reader is to underestimate the vital necessity of league tables, marks and passing and failing  to our daily lives. Well quite.

SEND children are educated in mainstream with TA support, at home by parents with more patience than this one, or Special School with intervention from various therapies and School Nurses alongside the teaching staff.They will learn in a variety of ways, some passing exams and going onto further study, some following a sensory curriculum and learning to react and express themselves in different ways.

A few really lucky ones will end up at Horton Lodge Community Special School,where they will leave with amazing self esteem, a can do attitude and a general belief that they are the equal of anyone. Shouldn’t that be the aim of education?

Does this approach prepare them for the real world? More on that tomorrow…..

This blog is part of a blog a day for Horton.If you’ve enjoyed it a donation to the PFSA can be made here.To find out more about Conductive Education in action check here.

 

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 A blog a day for Horton