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.
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.
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.
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.
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.
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.
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.
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 here
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)
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.
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.
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..
In which I ponder the black dog, his habits and my reluctant relationship with him.
This post was initially published on Firefly.You can see the original here
I have always been a big thinker. I don’t say this out of pride, in my experience it is not necessarily an advantage.
An introvert adolescent and the youngest of three, I spent plenty of time alone growing up. I didn’t mind.
I liked reading. I liked thinking. I very clearly remember saying to my mum when I was about four ” but what is a human being?” The philosophical thoughts of a preschooler are enough to make most parents shudder, but I’m not convinced my thoughts have moved along much.
The main problem of having a mind of your own is that you have no one else’s internal workings to compare it to. Your normal is the normal.
When does being a loner, a thinker, a ponderer, tip over into something pathological?
Are all introverts depressive? In an attempt to resist over thinking this I’ll tell you how it is in the grimy recesses of my brain.
Depression to me is hard to explain and harder to admit to. It colours other people’s perspective of you. Go to the GP and I believe a little flashing link appears on the case note screen.
”I think I’ve torn a ligament Doctor” “And how long have you been on the antidepressants Mrs. Scott?” (I exaggerate but…)
I have long felt that any bad health I experience, physical or mental is a character failing. If only I worked harder, ran faster and was an all-round better person, I would not experience this thing. As my excellent GP really did say “you are extraordinarily driven” Well duh?!Through sheer force of will I can, I will, be better!
Oh dear, that definitely sounds like the workings of a depressive brain. Couple that with the fact that I think I’m probably putting it all on. A double whammy.
Also, if I’m not depressed I’m happy. I don’t really do in between. I feel things extremely intensely, or I’m depressed when I don’t really feel anything at all.
In the absolute grip of it I long, long, for it to be over.
So what is it?
An absence of feeling. An abundance of desolation. A loss of appetite for food, drink, touch, smell, life. A deep hole which seems impossible to scale the walls of. A heavy sadness in my very bones. An utter and total loathing of myself, and a certainty that my family, my friends and indeed the world in general, would be better off without my draining existence.
Where does it come from? I know it comes from a lack of serotonin. I know that. But how, and why, and where has my quotient gone? Does somebody else have my measure? Is my happiness so happy I spent all my serotonin on a good day? Where does it go?
I lie some mornings in bed, sniffing the air. Is it here? Has it gone? It’s gone! I leap up! Oh. No Still there. On days like this I would amputate my own arm with no anaesthetic if someone told me it would make that thing, black dog, cloud, slough of despond, go away.
Sometimes I sense it creeping up on me. If there are too many hospital appointments or LA fights, I keep my wits about me and take action before it settles in.
Occasionally its stealth amazes even me. It quietly whispers into my unconscious brain “you’re worthless” So quietly that it becomes background unquestionable fact.
Most of all it lurks invisibly. People don’t see it in me, I keep it well hidden. Well would you go out in public if you felt like that?
Recently I’ve been naming and shaming. Get it out there in the light, show it up for what it is, in the hope it will burn up and fade.
Mainly at the moment I thank Big Pharma for the little white pills. They contain the right dose of my elusive serontion. I have hated them, I have resisted them, but now I welcome them.
Just now, right at the moment they help. They can’t solve my problems but they can smooth over the rough edges and help me muddle along.
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.
Despite the relative ease of the morning as I’m clearing up I reflect on rare diseases and how this one effects our family.
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.