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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A blog a day for Horton

 

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

 

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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Photo by Pixabay on Pexels.com

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

 

 

 

Home Thoughts from A Broad.

In which I, the Broad in question, dispense advice in a thoughtful and non hysterical fashion.Yeah right.

This post was initially published on Firefly Community. You can find the original herepexels-photo-302810.jpeg

 

As part of an occasional series designed to make you feel better about yourself I bring you:

Things I have done and regretted, to save you the bother of trying them.

 

If you too are attempting to juggle a career, various pets and an assortment of non-typical children, you probably find yourself at the bottom of the pile.

‘Me time’ may involve going for a quick wee.

It is l worthwhile making time for yourself, but keep your eyes open, your wits about you, forward plan and be aware of your environment. If not,you may find yourself:

Brushing your teeth with Savlon.

It is in a blue toothpaste like tube, it squeezes out onto your toothbrush in a white toothpaste like way. It is NOT however, nor does it taste like toothpaste. Despite probably making your mouth antiseptic and germ free it leaves your teeth feeling furry, like a bad hangover. Not one to try.

Applying Sudocrem to a small persons nether regions and leaving it in reaching distance.

The bonus of this is a quick indication of how far said small persons fine motor control, reaching balance and general determination has progressed, not easily measured on a standardized developmental scale.

The flip side is having to remove the zinc based white substance from the individual’s (let’s call her Pearl) hair, eyes nose and all furnishings and room décor.

On the last occasion (no I don’t learn from my own advice, yes it has happened more that once)Pearl went to school with the pallor and demeanor of a cheerful eleven year old Goth.

Putting Contact Lenses in without fully rinsing the soap from your hands.

From a distance it probably looked like I had perfected a new hip hop dance style, followed by a sudden realization of my own mortality and prolonged weeping.

Apologising for things done or requested

It weakens your case and is often a female default. Think, would a man do that? No? Then don’t. People may call you bossy rather than assertive, but frankly who cares?

Caring too much.

Not about your significant others, or your non typical offspring but worrying about what people think of you, your face, your hair, your opinion your child’s screaming.

Try not to wait until the advanced age of 47 to stop caring about these things. It’s a waste of time, you cannot control what people think of you, and chances are it’s not even what imagine.

Generally speaking I couldn’t give a F**.. fig (obvs)

(See also taking yourself too seriously)

(although not your opinion which is valid and you are entitled to)

In Conclusion.

Life is too short to:

  • Drink bad coffee
  • Completely avoid sugar
  • Spend time with people who don’t get you
  • Persevere with therapies that make you or the child miserable
  • Or eat olives (that might just be me)

 

Please feel free to step lightly into the carefree future.

You are most welcome.

 

Thought for the Day

In which I review my favourite inspirational messages-and a fair few that just don’t make the grade.

This post originally appeared on Firefly Community and can be viewed here 

Inspirational quotes, you know the ones. They pop up on your face book feed with a beautiful picture of a sunset, someone climbing a mountain, or jumping in the air with pure joy. They are a mixed blessing. Some can really resonate, a quote from an author, a word of scripture from a holy book. Some can irritate. Some are just plain wrong, I’m pretty sure that Winnie the Pooh didn’t make the “I have a dream” speech, and the things that Oscar Wilde reportedly said, well just don’t get me started.

Hand in hand with this come the helpful little phrases people choose to share with parents of children with additional needs. Most of this comes from the right place, although “God only gives special children to special parents” should be shoved somewhere else altogether.

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I have compiled, for your reading pleasure a short summary of some of the most common. You probably have some favourites of your own. If any come to mind that help you/make you want to punch somebody please share with the community below the line!

Don’t sweat the small stuff, and it’s all small stuff.

In parenting a child with disabilities, as in life generally, this is not entirely true.

We brush up against mortality, severe illness, pain and struggle on a regular basis, plus the big questions of faith, meaning, love and loss. It’s not all small stuff.

Whether you have enough likes on your Facebook Page, if you have sent a birthday card a bit late, if your house is a bit untidy this my friend is the small stuff. You have my permission not to sweat it.

What doesn’t kill you makes you stronger.

This has always been one of my favourites. However now I wonder whether to replace it with

“what doesn’t kill you makes you exhausted, sleep deprived, Clinically Depressed, the possessor of a fierce and dark humour, snappy and reliant on alcohol”

Self-care suggests the first reading is preferable. On the days where the second is more accurate be kind to yourself.

Which brings us neatly to

Be kind for everyone is fighting a hard battle.

You my fellow parent, if you care for a child with additional needs you are fighting a hard battle. The person who has parked in a disabled space with no badge, I have less sympathy for.

The Local Authority responsible for providing care and support for you, your family and your child? Well they are paid, and should be working on your behalf.

For most special parents this could be adapted to Be Kind for everybody is fighting a hard battle with the Local Authority. It shouldn’t be accurate but there we are.

What cannot be cured must be endured

Must it? Well in reality yes, and emotional resilience, the ability to bounce back and keep on keeping on is useful tool in the special parents armour. I would argue however that you need to find people who get you, family friends, parents in the same position, so you can endure it with a better grace together. It may be that you can (whisper it quietly) even enjoy it!

I will leave you with my current personal favourite, which happens to be biblical but I think describes us, our children and our struggles well no matter what beliefs we do or do not have.

 But we have this treasure in jars of clay

We are afflicted in every way, but not crushed; perplexed, but not driven to despair, persecuted, but not forsaken, struck down, but not destroyed.

As I frequently find myself perplexed, despairing and feeling forsaken this curiously helps me. Despite all this I am a treasure in my 47 year old body, as is my beauteous daughter in her tricky, muscle weakend, wobbly, treacherous, one.

We are all the same no matter what our abilities or disabilities and that,to me is rather wonderful..

A Poster Girl for Disability

This post was originally published on Firefly Community. You can see the original here

 

Years ago, we had a disastrous meal out. Pearl was present but not yet born, perhaps my reactions to it were coloured by the 8 months of pregnancy hormones sloshing around my body.

Four of us, Father-to-be of Pearl, a small Rab and preteen Glory on holiday. Visiting a highly recommended gastropub. A treat.

 

As this is not trip advisor and was eleven years ago I shan’t share the location.

 

The manager did not seem keen on customers, the service was at a snail’s pace, nothing on the menu appeared to be available, and according to F-t-boP, the floor in the mens toilets was not safe for sandals wearers. Lovely.

 

As we sat fuming a couple arrived. A man, in a wheelchair with a neurological condition, and his partner. As we longed for distraction from the diabolical service, and we are inveterate people watchers, we were fascinated to see him using his computer to communicate. Ten years ago this was even more unusual than it would be today.

 

Of course, I mentioned it to the children, I was a Speech Therapist who specialized in neurological conditions, it was a break from moaning about the service, and it was educational.

 

After an argument about whether ice cream was available on its own, as well as with apple pie, we paid up, relieved to be escaping. The children got up and ran over to the couple and stood smiling at them shyly and looking at the computer. I quickly joined them

 

“I’m sorry they are interested in your communicator”

 

Mrs. scowled angrily at me.

 

“We are trying to eat”

 

We left, tails between our legs, a horrid end to an awful trip.

 

I’ve thought about this incident a lot since having Pearl. At the time I was deeply hurt, couldn’t they see we were really interested and trying to make a connection? Now I think I was probably unforgivably ableist.

 

Does every trip out for a disabled adult or child have to be an educational experience for society at large?

 

Do ‘the disabled’ (and if you hear anyone refer to a people group in that way, draw your own conclusions) have a responsibility to be charming, well presented, and approachable at all times? Should they be expected to represent not just themselves, but the whole disabled community every time they venture out to the supermarket? Hell no.

 

Personally I want the freedom to be messy, tidy, made up, fresh faced, happy, miserable, charming or sweary as the mood takes me. If I become disabled (and a fair percentage of us will, through ageing alone) I don’t think that is going to change.

 

The first time we had personal experience of this was during Pearl’s statementing process. I was speaking to the lovely Educational Psychologist and telling her I was fearful that Pearl’s mainstream nursery would struggle, as they had no experience of disability.

 

Her response, that it would be a very good experience for all of them, was no doubt true, but not what I wanted to hear.

 

‘I don’t want her to be a poster girl for disability, I just want her to be a little girl”

I told Father of Pearl when I got home.

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Like it or not, wherever we go, whatever we do, we do attract interest. Admitedly this is added to by Pearl patting people on the shoulder or grabbing women’s handbags (I taught her well…)

 

So how do we deal with it?

 

I do not want to sit at home avoiding stares and questions. Nor do I always want to explain Pearl’s communication book or diagnosis, but I would rather she was out there in the world, than tucked away out of sight.

 

I suppose a balance has to be struck

 

A wise researcher once asked me what I wanted the world to be like in terms of inclusion.

 

“A CBeebies world” I answered.

 

Shortly before Pearl was born, thanks largely to Something Special and Mr Tumble, different abilities have been very well represented on childrens BBC. In all CBeebies programmes there is a huge range of children, glorious to behold, with frames, crutches, white sticks, hearing aids and all manner of genetic conditions. Graduate to adult TV and there are articles on how inclusive this soap is to have this or that actor, with a disability. Not on CBeebies. They are just there. No fanfare, no overt educational message, just included.

 

That in the end is what I want for my Pearl, her friends and the Pearls of this world.

 

Not the constant requirement to be an ambassador for disability.

Acceptance.

Inclusion.

A CBeebies world.

 

 

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