Goodbye to All That..

This post originally appeared on Firefly at the beginning of the new school term.

 

Hello and congratulations!

Made it through the school holiday?

Feeling smug?

Or, like me utterly exhausted and considering out sourcing your parenting to someone more qualified and altogether calmer?

Is the undoubted joy of handing your child over to someone else, tempered by fear of the consequences?

Then you are probably the parent of a child with additional needs.

Perhaps you love someone spectrumy who is managing in mainstream, but struggles with change and has to enter a new class, with a new time table, and new teachers?

Maybe your small significant other has complex needs and you have to trust someone to keep them safe, well, clean and alive, along with the curriculum?

Do you love someone moving from Mainstream into Special Education, and fear that there will be associated stigma?

Or is your small special person moving into Mainstream?

How do you balance the relief at having time to go to the toilet alone, with the concern that someone else who doesn’t have a parent’s eye is caring for them?

How do you relinquish control?

Pearl is now 11 and has left her beloved Primary School and is heading off somewhere new.

To be honest Pearl, although apprehensive, is excited and looking forward to making friends.

I do however, expect an increase in challenging behaviour and mood swings over the next fortnight.

And Pearl may have some too!

There is always a wistfulness to this time of year.

Taking the dogs out early this morning mist hung in tunnels over the fields.

The blackberries are going over (they have, “the devil’s claw”, an old term I particularly like for the fusty, past their best ones).

There is a feeling of change in the air.

Change of weather, change of season.

Shortening days and cooler nights.

I have been involved in the education system for 45 years, pupil, student, school therapist and mother.

Autumn is intertwined so tightly with the new school year it’s impossible for me to extricate my emotions from the season.

Tomorrow when Pearl puts on her new uniform and gets on a new taxi, to go to a new school I will be tense.

Will they understand her?

Will she fit in?

Will they see how wonderful she is?

Did we choose the right school?

I know I’m not alone.

From experience, I know this season will be replaced by the next, routines will be reestablished, and life will go on.

So fellow travellers, let them leave, take a deep breath, put the kettle on.

 

 

 

 

The Way We Were

A stream of Horton consciousness .

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!”

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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.

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Watch out world,she’s on her way.

 

School plays. This years nativity in which I, Mother of Pearl, was the proud Mama of the Mother of God.

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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.

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A visit from Paralympian Ellie Simmonds,when Pearl was reluctant to return the Olympic gold she’d been allowed to hold.

 

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Thank you Ellie,you don’t want it back do you?

 

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.

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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

 

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A blog a day for Horton

 

Also Known As..

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.

 

 

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This blog is part of a blog a day for Horton.Find out more here  Donate to the PFSA here

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Adventure Time.

In which Pearl flies through the air with the greatest of ease.

Most primary schools have a school trip, in year 5 or 6. It becomes legendary in the school and is a rite of passage.

Surely a school which caters for children with physical challenges would not be able to do this? These children need wheelchairs,  fancy equipment, medication, help washing, changing and dressing, some are fed through tubes .Far safer to keep them at home on familiar territory doing something nice and gentle like painting, or Muti Sensory activities.

If you agree with the previous statement I have failed, in the last few days, to convey the ethos of Horton Lodge Special School. For this I apologize.

I give you…..Bendrigg.

As soon as they enter the school this children know about Bendrigg. The big ones go there,  assemblies show abseiling, climbing,zip wires, caving.

As a newbie parent at the school, I was astonished.Pearl could never do that! Then I saw videos of some of the least physically able children in the school flying through the air on zip wires, squealing loudly and grinning widely.

And so, as it’s Saturday,and I need to take a small girl to her swimming lesson I’ll say no more, but treat you to some pictures of Action Pearl.

Oh just one more thing, if  you donate to the school PFSA ,or have donated, this is one of the things the money will go towards.

The logistics,training and high staff to pupil ration could make Bendrigg prohibitively expensive.The centre itself is charitably funded, but costs to Horton children are kept low by the PFSAs tireless fundraising. If you would like to help some of Pearl’s friends fly through the air next year (and imagine this feeling if you spend most of your time in a wheelchair) please donate any amount,  however small here.

 

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Important practice for being in small spaces before caving.

 

 

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I know tI couldn’t do this,She went in in her wheelchair, but the spirit of adventure is strong in this one.

 

 

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A brave face here,I saw the video, she was a bit scared at the top.
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Messing about in boats.
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Action Pearl.

 

 

 

 

 

This is part of a blog a day for Horton.

 

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A blog a day for Horton

 

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.

 

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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.

 

 

 

 

 

SEND 30 Day Challenge. Day 1 : Meaning behind Blog Name

It finally happened. I realised I have a terrible addiction. My laptop has died and I feel like part of me has been removed.

Blogging for me is quite old school, I write long hand in a real book with real paper and pen. I settle down with my beautiful laptop and type and edit and fidget. I also do my paid work on it, and all our family admin too. I  am not very good at typing on the tiny screen of my phone.

Yet here I am. A SEND bloggers group I am part of is doing a 30 day blogging challenge, and I want in!

It will be short, it may be pointless, it absolutely will be typed very slowly with one finger and wearing my bifocals .

Why is the blog called The Wrong Kind Of Snow? If you’ve been a regular reader you will know.

I love names,and slogans and brands. I’d considered “Home thoughts from a Broad”(already taken unfortunately) I toyed with “Adventures in..” and having several blogs Adventures in Vintage/Antique/Parenting/Disability/Autism but realised that might be too ambitious.  As one of the big supermarkets recently started using this, I’m glad I ditched this although I did wonder if I’d missed my calling and should be working in marketing.

Reflecting on Pearl’s lack of diagnosis and the catch all term that is Global Developmental Delay I thought of explanations given by British Rail for journey disruption.I did consider “Leaves on the Line and other reasons for delay ‘ but it was overlong and didn’t stick.

One winter the rail companies exceeded themselves by blaming the wrong kind of snow on delays and disruptions.Perfect ! Snow  has a quality of stillness, nostalgia, longing and rarity that appealed. I wanted to capture some of these feelings in the blog.

The desperate excitement and longing to get out into the snow, quickly replaced by the desire to be anywhere else, once the reality sets in seemed particularly apt.

 

Thomas in Snow

 

Two months into the blog and nine and a half years into the life of a small person, a diagnosis arrived in the post.

 

“One Girl’s Journey with a Novo Mutation on GNAO1” ?!?

 

The Wrong Kind Of Snow it remains!

 

You can also follow me and lots of other SEND bloggers on  Firefly Community 

 

 

 

 

Therapy?

Did you wake up this morning to find out your life was less than perfect?

Did you wake up this morning to find you were the parent of someone with additional needs?

Has your family life taken a turn you never expected?

Never fear, The Wrong Kind of Snow is here to help you manage your expectations, embrace your new normal, and hand you a tissue, before,during,and after, the school run.

Learn from one who knows,that good hair, cake, and sarcasm, can give you a veneer of coping without touching on the real issues.

I, Mother Of Pearl,can personally offer a service to help you laugh in the face of forgotten appointments

You too can learn to kick Local Authority ass-if necessary (and believe me it will be)

I can aid you in using the right word to describe the myriad of visiting professionals (hint no matter how they behave, team although a four letter word never starts with c or ends in t)

You will feel better about your housekeeping (pop in for coffee anytime….consider my home a therapeutic installation)

You can improve your distance running with the mantra “if you turn back now you’ll have to do the parenting thing”

You are most welcome.

Todays lesson involves a gold standard of therapy “Early Intervention” This is an excellent idea in theory. Take a child with issues and through intensive therapy bring them up to speed before they hit school age.

Intensive,regular therapy is expensive and hard to come by, but if it’s efficacy is proven it can cut down on future intervention thereby saving the state money. Neat. The child can catch up with peers or narrow the gap .Fabulous idea.

Have any of you come across  Hurrah for Gin ?  She has neatly personified the guilt that comes with parenting.I urge you to check out the Shitty Guilt Fairy .Unfortunately early intervention has real life guilt fairies of it’s own-the Professionals.Don’t get me wrong, these are knowledgeable, experienced, well educated, well meaning people who each have their own version of early intervention, that will if carried out by the parent to the letter improve an aspect of the child’s (let’s call her Pearl) life.

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By the time Pearl was two, our weeks consisted of an afternoon at The Child Development Centre (you can read more about this here).A morning at School for Parents (a substantial drive across a county border). A morning of hydrotherapy. Physiotherapy and Speech Therapy programmes to carry out. A morning at the local mums and tots just to point up the difference between her and her peers.Random visits to the hospital to search for the answer of the enigma that was Pearl with Paediatricians, geneticists, neurologists and a variety of puzzled and interested student nurses and Doctors. Between this I was attempting to keep up my Speech and Language Therapy Registration and feed and parent the other two children and sustain a marriage.It was hell, but I foolishly believed I could continue at this pace in the short term as it would miraculously cure Pearl and life would return to normal. How fondly we would look back on her early difficulties as she received her Nobel prize for Literature.

Truly some of this pressure came from within, but it was unwittingly reinforced by the Professionals individually ‘supporting’ me while not seeing the wider picture.

I would love to know how models of diagnosis and therapy work in other countries.Our Western model of medicine,and our work ethic may be leading us to a mistaken belief that we can work our way out of difficulties.That proper perseverance and elbow grease can solve our problems through sheer exertion and force of will.Pearl was never going to be fixed by tonnes of early intervention.What we needed as a family was support, time to enjoy our girl’s babyhood, practical help with physiotherapy and the necessary equipment, not to become a problem that was there to be fixed.My girl has such strength of character,stubborness and determination,I wanted a professional or two to recognise that and celebrate it with me,not to point out her difficulties and attempt to eradicate them.To be fair the same medical model that wants to fix the Pearls of this world is exerting it’s own strain and pressure on the very Professionals that implement it.The system wants to see they have effectively fixed as many people in as an efficient way as possible.

All this can lead, for the best motives in the world, to a society that sees disability as a problem, and fails to see the individuals behind the case studies.

So what can be done? As parents it’s important to try to keep a sense of who your child is and who you are as a family. This is really difficult when you are going through tough issues and being asked to make tricky decisions with little support.Try to get someone on your side, perhaps a professional who knew you and your family before you became “a problem”. Organisations like The Carers Trust, Carers UK or Contact a Family often have local representatives who can help you make sense of what is beneficial and what can be left until later.

A health visitor came to visit us, and was flabbergasted at how my week was structured, and how little support I was getting.I having become sucked into the Special Needs Vortex had lost all sense of what was a reasonable expectation of family life.

As parents you may have to sit on the naughty step and refuse to do everything-I’ll warn you, you may get a black mark.

Alternatively join me and other parent carers in learning how to look as if you have carried out all the therapy, while actually you have been cuddling your child as they watch someone on youtube unwrap a giant Easter Egg.

At the end of the day your child is part of a family,not a state funded research project.

 

 

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