In the last two weeks, I’ve ranted, remembered and recommended. Thank you for bearing with me.
I am aware that there is a group of people who I have not thanked.
The children of Horton Lodge.
You amazing group of individuals have welcomed me;
“Hello Pearl’s mummy!”
You have made me laugh at your energy and enthusiasm, stunned me with your drive and abilities.
Thank you for letting me see you take first torturous steps with a ladder walker. Thank you for sharing your new found abilities with your electric wheelchair. Thank you for treating me to the sound of your name spoken in your own voice. Thank you for showing me how you can bash that Big Mac button to make your voice heard in assembly. Thank you for letting me, for letting all of us parents, celebrate your achievements with you.
So many of you have shown me so much about joy, frustration, drive, the importance of independence and also of community. A few of you lived your short lives as part of Horton’s family , and oh, how it hurt our hearts to say goodbye, how we missed you, but how you lived and were loved!
I’m so glad for all of you that you came into Special Education at this time when attitudes are changing technology is widely available and your voices can be heard. They might not be ready for you yet, out there in the non Horton world, they’re a little slow I’m afraid, but you’re coming and they will all have to learn to #bemorehorton and just #reachforthestars
“Don’t believe in all that you’ve been told
The sky’s the limit you can reach your goal
No-one knows just what the future holds
There ain’t nothing you can’t be
There’s a whole world at your feet ”
Change occurring always opens up a stream of memories of places, people and things.
Today I bring you a stream of Horton consciousness.
The School trip to the Snow Dome in early years. Pearl and I traveled together and arrived early. As we waited she grinned at me and signed vigorously. Although I wasn’t very familiar with Makaton at that stage I knew exactly what it was.
“Yes” I grinned back
“I’m excited too!”
The Horton fundraising triathlon. All the children swam ,wheeled, walked, stepped. Those who could rode bikes, while others pressed buttons to move a cyclist on the computer. It was done in class teams and while it was another teams turn they were supported with whoops shouts and shakers for encouragement.
School plays. This years nativity in which I, Mother of Pearl, was the proud Mama of the Mother of God.
The environmentalist one about polar bears (!?) where 4 wheelchair users bedecked in Christmas tree lights were by danced by TAs in formation while “Northern Lights” played in the background.I’ve seen some world class theatre and contemporary dance but watching this was right up there.
The fortitude the staff showed one dreadful year when Horton lost three children with life limiting conditions in two terms.The way they continued while supporting parents and children and managing their own mourning was commendable and impressive.
A visit from Paralympian Ellie Simmonds,when Pearl was reluctant to return the Olympic gold she’d been allowed to hold.
The Oscars when children are presented with Oscars for proper achievements like fabulous community spirit and great communication aid use while dressed up for the occasion.
Oh and the leavers assemblies when the handful of leavers a year are remembered,teased,and commended for simply being who they are, part of Horton family. Huge apologies to the friends whose children left in the last couple of years, I just couldn’t bear to see them go so stayed at home.
I would go on, but now it’s time to go to a leavers assembly I also feel emotional about, although this time staying at home isn’t really an option.
This post is part of a blog a day for Horton.You can donate to help us say thank you here
In which the Glory enters the hallowed halls of Horton, and leaves me with a lasting impression.
As the Glory, back from University pads into the kitchen to make a cup of tea I complain.
“Now I’ve got to write another blog and schedule it for tomorrow ‘cos I’ll be too busy”
“Write one about me!” she exclaims.
During Year 9 all students have to do work experience. Anxiety was beginning to bite The Glory of the Clan, and she was quite unable to decide what to do. As she was considering Medicine or something related at the time, I suggested Horton, as long as she was not in the same class as Pearl.
A week with the Early Years followed.
“What did you do today?” I asked.
“Oh something really excellent, with the sensory group. They lay down and we played chimes music, and touched them with feathers and stroked them, and did some massage too-they loved it, it was called TacPac”
“What does that stand for” asked the ever curious parent.
“I don’t know”
I’ll just explain, that we have always played word games, in our family, making up phrases from number plates or abbreviations.
“Probably Tap a Child Poke a Child” says she.
And in our house that’s what it has been ever since.
I leave you with some incredible art work, from my talented daughter-sorry Oh Glorious One, but it is Pearl’s blog really.
This blog is part of a blog a day for Horton.Find out more here Donate to the PFSA here
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.
It’s summer in the UK, and rather unusually we seem to be having one. The weather is consistently hot, but more extraordinarily, consistent.
I love this. Love the heat, love not having to leave the house for a day out with four seasons worth of clothing . Pearl loves being outside, but actually the heat is more of a trial to her. The extreme temperatures (and apologies to any readers in Australia, to us 28 degrees C is extreme) makes her unpredictable muscles floppy, weak, and well, more unpredictable
Times this by 50 and you have a school full of hot, floppy, grumpy, children.
“Please bring in a change of clothes and a water pistol tomorrow we will be having a water fun day”
Leading to another favourite home-school diary entry.
“We have had a great morning outside in the sun for our school waterfight”
This dear reader is another reason I love Horton.
This is part of a blog a day for Horton, which, thanks to reader generosity, has already raised £360 pounds for the Parent Friends and Staff Association.To add to the pot, help keep the school minibuses in good shape, and put money towards future Bendrigg trips you can donate here (don’t be put of by the £10 suggested minimum on the page, give as little or as much as you like!)
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 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”
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.
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.