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blogosphere) was having ‘tantrums’ (yes, before diagnosis we thought he was acting up) and was becoming very sad and withdrawn.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.

 

fullsizerender-6
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.

 

 

logo
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”

fitness girl hands lifestyle
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.

 

logo
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!

FullSizeRender-1

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.

IMG_4029

Be more Horton.

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

 

 

logo
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.

IMG_2783

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.

abstract alphabet arrangement away
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.

 

logo
 A blog a day for Horton

 

 

 

Wonky Genes. Rare Disease Day 2018

Eleven years ago an event occurred that made me Mother of Pearl.

A home birth, relatively easy, despite traffic problems meaning no pain relief at all.(Pause for standing ovation)

This beautiful third baby took us on a journey of discovery, to see if we had what it takes to join the Special Parents club. Fortunately it appears we did, which is just as well.

Nine and a half years of alternative reality later we finally had a diagnosis.

Join me on a normal morning in our household.

Six a.m. the alarm goes off. Father of Pearl is in Barcelona,with work. (Having had a full week of half term already, I was delighted to receive pictures of Gaudi’s world famous architecture while child wrangling)

Pearl is already awake and shouting loudly (she is non verbal-but vociferous).

I change her wet nappy, bung her a breakfast biscuit and an iPad,jump in the car to take her older brother to the bus station for college. (Before you phone social services her older sister is home from Uni and holds the fort.)

Back home, up date the Home School diary with the events of the half term week-forgetting to include the fact that she fell once or twice a day over the holiday, explaining the purple bruise on her behind. I should have mentioned the scratch on her tummy too, but forgot until now. I daresay there’ll be a note.

Pearl proceeds to climb into my bed with iPad (other tablets are available)  as I explain that it is no longer the holiday and she has to get dressed.

Pearl is famously bad at transitions and despises having clothes put on.The tights are OK, but something is very bothersome about the jumper and it leads her to throw herself on the floor and weep big fat, slightly over dramatic tears. After a debrief, several cuddles and a face wash we go slowly down the stairs. Slowly because as she gets taller (about 5ft now) her legs are becoming less and less predictable. I have to go down in front of her backwards. Also slowly as somehow we have got into the unwise habit of her throwing herself into my arms and biting my left shoulder, before signing sorry and cuddling and kissing my right shoulder. I do not know how I allowed this to develop,  but it has and it is what it is.

We have by this stage, left a trail of pyjamas, unmade beds, dirty nappies and breakfast biscuit wrappers behind us.We have ten minutes until school taxi arrival time. Fortunately she has got out of the right side of the bed, and sloughed of the dreadful dressing experience and allows me to brush her hair, without the need for us both to have counseling (this is remarkable)

Five minutes to get her into splints and shoes-and she doesn’t kick me in the face today-bonus!

A big kiss and she lets me put on her coat, and makes no fuss at all about leaving the house for the taxi. It is a good day indeed.

 

img_9901

Despite the relative ease of the morning as I’m clearing up I reflect on rare diseases and how this one effects our family.

Pearl has a novo mutation on GNA01. This was discovered by the Deciphering Developmental Delay study, which we took part in as a result of SWAN UK.

SWAN (syndromes without a name) is part of the Genetic Alliance, and provides support to families with children who despite a myriad of difficulties have no known diagnosis.

GNA01 does not describe Pearl’s difficulties but the gene change that produced them. It is a novo mutation, as it is new, and happened by chance during her development in utero.We did not pass it on, and statistically Pearl’s siblings are no more likely to pass it on than we were. Her geneticist did not spot it as Pearl was not particularly similar to the wider cohort of children with it.

Pearl’s difficulties, include epileptic seizures. These are rare for her and well controlled by a vary low dose of medication. Not so in the wider cohort, where seizures can be frequent and hard to tame. She does not display the uncontrolled and random moment disorder displayed by the majority of the group.She has an ataxic gait, walking  (as one Orthopedic Surgeon who went to the Bernard Manning school of tact) like a drunken sailor. Her centre of gravity is all over the place and her muscles are unpredictable, increasing in tone when she grows, while also unexpectedly giving out and causing falls. She has no recognizable speech, although she uses yes and a head shake, plus her wonderful PODD communication book. Severe learning difficulties, double incontinence, global developmental delay, poor fine and gross motor skills and a bit of autism complete the picture.

Luckily neither this list, or her diagnosis define her.

She is observant, funny, loving, thoughtful, stubborn, self possessed, strong willed and has a ridiculous sense of humour.

So what has Rare Disease diagnosis meant for us? If it isn’t who she is what its the point?

Well it has given our children peace of mind about the chances of passing it on.

We are now part of an online community of parents with children with the same condition, we can ask questions, share stories and see what the future may look like.

Most importantly we are taking part in fact gathering for the next generation of geneticists, parents and Pearls about how the disease can look.

There are thousands of children out there with Rare Diseases and no easy answers, further research is needed to smooth the way, provide evidence for therapeutic intervention.give support to families and arm the professionals with information to pass on.

It’s Rare Disease Day. I love someone rare and she is quite magnificent.

 

 

 

 

 

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.

fullsizeoutput_36b

 

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.

 

 

MN-blognetwork-104-final

The Kindness of Strangers

In which we meet an unexpected angel, unawares.

 

This post originally appeared on Firefly Community and you can find the original here

Christmas this year was a bit of a wash out.

In the seven-week run up, our house had become a breeding ground for all kind of viruses.

All of us (bar Pearl) had flu, colds, infections and stomach bugs, with hardly a day off in between.

I couldn’t exercise and found (who knew?) that if you eat more than usual, while doing precisely nothing your clothes inexplicably shrink.

It was with some relief that January and better health rolled round. The first hospital appointment of the year, on the second of January, seemed like a return to normality.

 

As Pearl grows older it seems likely that she has a degree of ASD in with the mix of physical, cognitive and sensory problems. She is very routine dependent and her understanding is very experienced based.

We are well used to seeing Pearl’s marvellous orthopaedic surgeon, and Pearl is usually very cooperative. We park up, she gets into her wheelchair (it’s a long walk from the car park to outpatients).

 

The first working day of 2018 was different. Pearl’s kaye walker (a kind of a walking frame on wheels) was just visible in the back of the car. On the hour-long journey, she insistently pointed at it and shouted.

“Do you want to walk when we get there?”

She deploys her only recognizable word.

“Yeah”

“OK. We’ll see if we have time.”

How blithely I make this throw away comment.

 

We arrived. There was time. Pearl was insistent.

 

Now usually when I say Pearl goes in the wheelchair, actually we go straight to the shop and buy fruit and a biscuit for distraction purposes.

 

Pearl set off in her walker. I hadn’t realized how much she’d grown over Christmas and it wasn’t providing her with much support. At some points she was carrying it around her. It was frankly not ideal.

 

 

 

After getting to the front of the hospital with some difficulty she stopped and signed biscuit. We still had at least another 5 minutes before even entering the hospital, let alone booking in and getting to the clinic. I looked at my watch.

 

“I have some biscuits with me” (I was a Girl Guide and the motto, “Be Prepared” is engraved on my heart)

“We’ll have them when we get to the waiting room”

This is clearly not the right answer. Screaming, suddenly and out of nowhere, starts. Proper blood curdling, being murdered screaming, emanating from my usually biddable and cheerful child.

 

Now I’m in trouble.

 

Is she in pain? It is a long walk,the walker isn’t supporting her.

Is she expecting the biscuit we usually buy?

Is she suffering sensory overload? A lot of people are leaving the hospital and streaming past us. It is very noisy.

 

Or is she just in a bad mood?

 

I have no idea, I can’t use her PODD communication book because my hands are full of the stuff we might need for any and every eventuality. I can’t take her back to the car for her chair, it’s too far and we’ll be late. Pearl will not move an inch forward and now she is grabbing random passing strangers.

 

It had all been going so well.

 

Suddenly a woman with blue hair, piercings and fabulous boots walks straight towards us. I get ready to stop Pearl grabbing her, when this stylish angel looks straight at me and says

“Can I help?”

 

This is only the second time this has only happened to me in eleven years and thousands of meltdowns, so I’m a little nonplussed.

 

My immediate, and rather pathetic response.

 

“I don’t know. I’d love some help, but I don’t knowvwhat’s wrong, I don’t know what you could do”

Resourceful. I know.

 

Then the inner Girl Guide kicks in. I have an idea.

 

This amazing stranger agrees to stand with a completely hysterical child while I run back to the car, at some speed, for the wheelchair. I explain all this to Pearl, who is really beyond hearing at this point. I check again with this magical apparition.

“Are you sure?”

She is!

I leave them with the the emergency biscuits and make a run for it.,

In the distance I can hear her, gently explaining.

 

“Mum will be back in a minute. Would you like a biscuit? No? You want a hug?”

I turn to see Pearl fling herself into this persons arms and sob messily on her shoulder.

 

When I return, she is still cuddling a calmed Pearl and speaking to her with great gentleness.

 

This extraordinary individual then proceeds to apologize for not knowing how to help Pearl into her chair, which is really not a problem at all, and suggests she stays with her while I take the walker back to the car. She does.

 

By the time I return, everything has returned to normal.

 

Biscuits have been consumed, legs are rested. All is well

 

So, when a blue haired angel appears on the front drive of Stoke City University Hospital, how do you show your appreciation?

 

She deserved an Oscar, a Damehood, at the very least a cup of coffee, but we had an appointment to attend.

 

Instead I touch her arm look her in the eye, and say.

 

“You have no idea how grateful I am for your help”

 

“S’alright, no bother”

 

She smiles, turns and fades into the crowd.

 

So, oh stylish one, wherever you are, whatever your experience that led you to help this child, on this day, I thank you from the bottom of my tired, overwrought mothers heart.

 

You saw through all the screaming to exactly the wonderful  person my small girl is.

 

Saw through all my attempts to remain calm and capable to exactly where I was.

 

For this I salute you, and will never forget you.

 

Thank you.

 

 

If you have enjoyed this, why not follow the blog?

Find me on Facebook 

Connect on  Twitter @WrongKindOfSnow