Huge thanks to our wonderful National Health Service.
After Pearl’s surgery (bilateral submandibular gland removal plus unilateral parotid tie)
I bring you
1. Pearl slept from 4.30 pm until 10.30pm and then woke up talked and sang for two hours while I tried to encourage her to talk quietly because there was a baby sleeping next to us. Pearl has no volume control. Sadly.
2. At 12.30 she got a bit hyper/agitated/hysterical (probably the GA on its way out of her system) bounced around the bed crashing into the phIals collecting her blood from drains, and bit off the top of her venflon. Bed now looking like a blood bath she promptly fell asleep.
3. At 4.10 am she set off an alarm which made me think she was dead and I woke up and the nurses came running. Pearl who had pulled the end of the monitor off stayed fast asleep.
4. Apparently hospitals do not heat wards at night. I am a fan of saving money and supporting the NHS however I think piping refrigerated air onto sleeping parents probably costs money too.
The NHS and Manchester Childrens Hospital in particular is MARVELLOUS.
It is clean the staff are friendly and they have performed an amazing, and I am sure costly operation,swiftly cleanly and efficiently.Their priority at all times has been Pearl. Half hour then hourly obs performed kindly, calmly and with great gentleness.
2. I am a grumpy smelly middle aged woman better suited to a super king sized bed. I will however physically fight anyone who hurts Pearl or tries to remove me from being grumpy and smelly on a camp bed next to her.
3. It is still possible to put make up on in a dark room with no contact lenses. The intention to groom well is strong in this one. I couldn’t possibly comment on the result .
4. A flannel wash is no way for a grown woman to live.
5.Pearl is doing splendidly and should be home by lunchtime.She is not drooling!
6. I am not omnipresent and find I am unable to both look after Pearl and go to a memory clinic visit with my mum. Now that’s something to remember.
Parenting can leave your personal life in tatters, your emotions wrung out, and as for your libido, well, nuff said.
Being a parent carer of someone with Additional Needs can magnify this, and many relationships buckle under the strain.
Luckily I had the foresight to marry someone 23 years ago who would easily be able to support me on this journey and who I also continue to fancy the pants off. Lucky is the operative word here, how could we possibly know at the tender ages of 25 and 26 what our lives would become? We were babies!
Anyway, that’s not the point. Despite childcare demands and the menopause (and if you are related to me you may want to LOOK.AWAY.NOW) which has had an unexpected effect on my-lets say drive-my body appears to have thrown caution to the wind, aware that reproduction is no longer a threat.
This is a brief explanation of how I nearly managed to scare a Social Services support worker, and how despite being 48 have so far failed to do grown up.
One day, after a run, I returned home glowing, and full of endorphins to an empty house. I was wearing s cute hat stolen from the eldest child (it was winter) and was looking, #imho, pretty fine.
Flinging my clothes off pre shower, I caught a glimpse of myself in the mirror and was happy with what I saw. (Oh if only I appreciated myself as much when I really was glorious in those teenage years before everything became overused and droopy, as I do now in (gulp) middle age.
Sexting is really not a thing for my generation (feel free to disagree and share-I dare you!) but for some reason, the endorphins, the cuteness of the hat, the HRT, I felt it would be appropriate to take a cheeky, topless shot. Not totally topless obvs -I was after all wearing a hat! This for the benefit of Father of Pearl. Just to remind him.
Sniggering like the teenager I never was (my version was sensible and religious) I fortunately texted him before pressing send.
“Are you on your own I have a picture for you”(winky face)
“No,NO.NO I”M NOT I’M IN A MEETING!!!!!!”
Thank you, thank you, God that I had the 48 year old foresight to text ahead, specifically as I had not realized all texts run live down the side of the ridiculously large computer screen in the Blue Beck offices.
As my running high wore off remembered. The cloud! It was a thing! We had it! We all shared it including my teenagers!
Frantic texts followed
“Will that picture be on the cloud? Can the children access it ?Who can see it????
Shit, shit, shit.
Anyway it was finally sorted, deleted, cleared normal life resumed. I decided as a passion kindler sexting was not for me.
Back in the real world of additional needs.
Pearl receives direct payments for Personal Assistant employment. Every 6 months or so a Family Support Worker comes to visit to check we are using them appropriately and what’s occurring Chez Pearl.
Pearl had, since her last visit taken part in a play, modelling contract or some-such of which I was inordinately proud.
I sat down next to Mrs Family Support to show her the photos.
Scrolling though as you do (note to self never scroll through photos next to someone. At best it’s boring) I suddenly appeared. Sans top and plus a rather fetching hat.
I have never ever, ever, swiped a phone so hard or so quickly. A blur (I hoped) of pale flesh. Cheeks on fire, I said, with a nonchalance I did not feel.
“Oh my days what was that? I don’t know what the was !”(nice try Pinocchio)
And then, because I’m a really good parent
“What have those kids been doing with my phone?”
Thus throwing into question my parenting of said teenagers.
Did she see?
Did she know?
What must she of thought?
I think she must have, I think she would have known?!
How did the ****ing photo remain on the ****ing phone when I’d deleted it with such assurance?!
Even my tech guy (and he is good) doesn’t know.
The epilogue to this sorry tale of middle aged desire.
My children have not been removed. My husband thinks I’m hilarious. No teenagers saw anything that would have embarrassed me and mortified them.
Better yet the entire staffing of Social Services has been restructured and we have a new family support worker.
Pearl is currently in transition. In non jargon she has spent half a day at her new school, and today is spending the whole day. The rest of the week, it’s back to Horton for goodbyes, parties and general end of term shenanigans.
I too am in transition.The new school seems really promising, a new start is quite exciting. The holidays are coming, there are still house moving boxes to be unpacked, Pearl has a new set of wheels from wheelchair services.
Last night I dreamt someone told us we couldn’t live in our lovely new house anymore. We went back to the old one, and the new owners had spoilt it, and wouldn’t let us have it back. Then a variety of people I love and respect appeared and told me they hated me. It was one of those nights when I may as well have stayed awake.
When I am very stressed, I get busy. (At one point I was doing three part time jobs and caring for two children with additional needs, plus one with mental health issues) at others I’ll set myself challenges, or overcommit to volunteering.
It works well as a distraction strategy, but it doesn’t actually make the stressful situation go away. If I allow it to, I become totally overstretched and have to drop everything.
It is just possible I am writing a blog a day, to distract myself from the very purpose of writing it.
Pearl is leaving Horton. All the people who have known her for the past 8 years, watched her grow, faciliated her development gone. The staff who encouraged me when I was wrangling with the LA for a place at Kiplings, the people at Kiplings who have washed her, put her in her PJs and tucked her in, will all fade into memory and no longer be part of daily life. Pearl’s marvelous Paediatrician, who has been with us even longer, now works for Staffordshire and has a clinic in Horton. She has listened to me whinge and rail against injustice, provision and NHS shortcomings, and celebrated with me when Horton turned out to be the place, the very place for Pearl. She too will be replaced by someone from our Cheshire, because it makes logistical sense.
I am not good at goodbyes, not good at all, and leaving all these people will be a tremendous wrench.
When my children stay away overnight, I have always put a lipstick kiss on a post it, and written ‘a good night kiss from mummy’.
Just in case I become emotional and rush off on Friday, here Horton is one for you all.
This blog is part of a blog a day for Horton.So far we have raised, through your generosity £390 for the Parent, Friends and Staff Association.To add to the pot and help them provide some extras that make a real difference to the friends of Pearl donate here.
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.
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.