Tag: #disability

Here Comes That Sinking Feeling.

In which I make a clunky link between learning a new sport and parenting a child with additional needs.

I’ve never done drugs. I’ve never smoked a cigarette.

I am, Dear Reader, an Osmond without the teeth and the Mormonism.

I have therefore to choose my highs naturally, and the latest, most modish high is open water swimming.

This is an extremely predictable middle aged women’s pursuit apparently, along with triathlons and getting tattoos to remind you that you are in fact yourself-and not the mother of three complicated individuals who are apparently unable to load a dishwasher, despite being eminently capable of unloading the fridge..

in this spirit you join me about to pack my bag to swim, in a lake under instruction.

I am a rubbish swimmer.

I hate taking children swimming.

I can’t do the sedate and sustainable breast stroke.

Instead I was taught a showy splashy front crawl, which is exhausting and doesn’t coordinate well with my breathing.

Fortunate enough to live bordering the Peak District I have hills surrounding me that are fabulous for running in and bird spotting.

Nearby is a particularly beautiful stream, ending in three waterfalls which people love to swim in. I’d never been despite living 20 minutes drive away for the last 25 years, didn’t even know how to find it.

Six weeks ago on a freezing May Day (oh how I love this country!) in the rain, with 3 people I’ve never met, I swam in it!. It was amazing.

A codicil. Getting out I experienced a continuing drop in body temperature, like a pre hypothermia, that effected my cognition, movement and vision.It was bizarre and unpleasant, and is the reason that if you decide to do this for the first time you do it with someone experienced,who explains that it might happen, tells you what to do if it does and watches you like a hawk to make sure you are OK. (Basically my body wanted to lie down and sleep, but I knew I had to keep warm and keep moving and it would pass) People die in open water, and it is much colder than you or your limbic system is expecting.

Anyway I want more, but I need to improve my swimming and I need to be with someone in case my brain plays hypothermic tricks on me again.

I leave in an hour with everything packed in a ruck sack, and am excited and trepidatious.

14 years ago my body did something extraordinary and heaved out a remarkable individual with no pain relief. (Yes I have mentioned it before and no I won’t stop banging on about it because I am actually a Goddess)

I had experience of birthing and parenting twice, and was well aware that it could be difficult, painful and unexpected, but oh the highs….definitely worth it?

Apparently when faced with uncertainty, disability, and unusual development of a child, coupled with complete lack of diagnosis – a parents body can do strange and unusual things.

Denial is one, fierce overprotectiveness another. Anxiety, depression and an inability to do tasks that were previously achievable all present.

A reasonable reaction at this time may be to lie down and sleep, forever.

I’m afraid sleep is for losers, or people that don’t have to wake up repeatedly in the night to change a teenagers pad/resuscitate a toddler/unblock a PEG feed(delete as appropriate )

If you are new to this extreme parenting I just want to come along side you and say, this reaction is normal.It doesn’t make you a bad parent.It doesn’t make you ableist.It is a reflex your system has that can’t be explained, strikes each of us to a different degree and is not entirely unpredictable..

There is a trick to working through this.

Keep moving.

Keep warm.

Keep someone close by to keep an eye on you.

Make sure you have plenty of coffee and something sweet.

Persisting through this difficult time will bring its own rewards, and teach you about yourself your strengths and weaknesses (believe me you will have both)

It might not be easy. It won’t always be fun, but then training isn’t supposed to be. It’s supposed to be training.

Dear fellow parentsI am in no way minimising the grief, confusion and sheer exhaustion an unexpected Pearl in the bagging area can bring.

But know this. It is possible to survive these early feelings of disorientation.

It is possible to thrive in a harsh environment.

It is possible to be utterly giddy with joy at your achievements. Not always, because come on people this is after all real life,not just a tenuous analogy about sport, but often.

Ease yourself in. Check your breathing.Persist with caution, but nevertheless persist.

You my darling have absolutely got this.

With thanks to Suzie at Peak Swims, currently rebuilding my swimming technique ! (News just in I didn’t drown or get hypothermia but I did work hard and had a massive giggle too!)Check out her page here

Power to the People!

I have a bucket load of experience in hospitals, many of us do. I love the NHS, but it can be easy to feel disempowered and remember what to say in appointments.

Top tips from me, top tee from Mutha.Hood​.Originally posted on firefly

 

A close relative who is also an Occupational Therapist has recently found herself on the Special Needs journey. She works in hospitals four days a week. People consult her for advice and opinions.

On her other days in hospitals for appointments, with her Mum hat on, she has noticed something strange.

Her opinions are an afterthought.

“We’ll do this and this and this. Alright Mum?”

Opinions and appointments are offered as a foregone conclusion.

If she knows an investigation is available or helpful, she has to repeat herself.

Again. AND again. She has to employ more assertiveness and determination her mum role than she does in her professional one. There is an imbalance of power.

 

I am not offering this as an example of how bad professional are. She is one, I was one.

 

Only a generation ago Doctors and Health Care Workers weren’t

required to work collaboratively, they were Consultants, the ones with the answers.

Naturally good doctors always have been great communicators, but if they weren’t it was rarely questioned. You had less choice in who you saw, and knowing a Medics first name, much less using it was a very rare thing. This is the medical model-you see a medic they fix you.

 

Things have changed a great deal, and some have stayed the same

The Medical Model continues to haunt the NHS-and let’s be honest as users it is what we would really like. Imagine if I took my nonverbal girlie to the Paediatrician and she was given a pill and came out talking!
In the beginning of the Special Needs journey this is what most of us want and expect.

There must be an answer, mustn’t there?

 

So, the imbalance of power is partly historical, partly to do with a Western idea of medicine, and partly handed to the professional by us. (Think “my child is broken please fix it”)

 

There is are other reasons though that we find ourselves disempowered as parents.

One is very simple. We are in crisis. A situation has occurred that we have not encountered, most of our friends and family haven’t experienced and we are not taught about at antenatal. We have a child who is different, and we don’t know what it means, for us for them or for the future.

 

When I was working as a Speech and Language Therapist, I had loads of experience of Speech and Language problems. None of this experience was personal.

I had met and become close to lots of clients with language issues, but I had not lived with them.

The Hospital I worked in was my place of work-for the community it was a place of crisis.

Friends and relatives had experienced the worst moments of their lives there, and some had lost their nearest and dearest.

My friends worked there with me, shared coffees and lunches. The work was emotionally taxing (health professionals are generally an empathetic bunch who experience some degree of vocational calling) BUT at the end of the day I went home.

 

I offer this as an explanation not as a solution.

 

Professionals can become excited by new therapeutic solutions that won’t work for you, for your child or family-so how can you come to hospital meetings and not be overwhelmed or feel confused or railroaded into plans you are not happy with?

 

Feeling emotional, confused and vulnerable is normal. You are in an unusual situation. In the early days try not to go to appointments alone. If you don’t have friends or family able to come, local parent support groups should be able to offer you an advocate. This is great as along with having another person on your side of the table they can debrief you afterwards.it is entirely possible to go in to an appointment and feel you’ve understood everything only to immediately forget it all.

Trust me I’ve done it!

 

Think of what you want of the appointment. Write it down before you go in and try to get your questions answered.

 

If somebody says something you don’t understand ask. You are not being stupid; they may be using language they take for granted in work life that normal mortals just don’t speak.

 

Try to summarize what has been said in the meeting to check you both understand

“So, you’ll make an appointment and I’ll get it in the post?”

 

You may not get on with every Professional you meet. That is OK they are not your friends. If, however you think they are not working in your best interest, despise you or seeing them makes you feel physically sick you should probably talk to someone, because that is NOT alright.

 

Finally treat yourself! If the idea of appointments and the amount of emotional strength you need to get through them makes you anxious try to trick yourself with the promise of coffee cake or McDonalds on the way home. It works for my 13-year-old, and frankly me too!

 

The dream is meeting Professionals who you get to know, form a good working relationship with and who you look forward to seeing. It will happen and when it does, when they understand you and your child that is momentous. Cherish those people and reward them with chocolate if necessary, they are worth it!

 

 

The Best Laid Plans.. I

This post originally appeared on Firefly.

My mum has always said that nobody should ever have a first baby. Much better to start with a second when you have all the relevant experience.

In a similar spirit of helpful but impossible advice I offer you a planning schedule recommended to be in place before giving birth to a child with Additional Needs.

 

You are most welcome.

 

Do not have a prior history of depression, or any health needs physical or mental of your own.

You won’t have time for them. No professionals will ever think of asking after your health, so really there’s no point.

 

Knowledge of law or education, preferably to degree level is highly advised. Without these the Local Authority may attempt to tell you that you are not entitled to expensive things, that you really need and actually are.

 

Career ambition for yourself is not necessary, you will be required to cancel meetings, work days and other plans at the drop of hat to fit in appointments, which mysteriously seem to congregate together within a fortnight. You can of course cancel and rebook, but that risks being labelled a difficult parent. It won’t be written anywhere, but everyone will know you are.

 

Ambition generally is a dangerous thing, imagining you could go out alone or with a partner is optimistic, on some days going to the toilet alone will be completely beyond your capability. Believing your child deserves a place in society is also problematic. Being prepared to settle for less can lead to reduced emotional stress and, therefore, peace.

 

An independent income, preferably from a Trust Fund or inherited wealth will make your life easier and less of a drain on the state. It also ensures that you don’t have to discuss your family’s difficulties or finances with well-intentioned Charities. Think of the time you could save writing crowd funding requests!

 

Ensure that you are a very young parent, in peak physical condition and that this is your only child.

 

Be certain that you are an older parent that cares less and that this is at least your second child.

 

Be in an extremely stable relationship with a healthy, resourceful and emotionally aware partner.

 

Be a single parent with an incredibly supportive family and friends, you don’t have time for a relationship anyway.

 

Ensure your house is on one level with total accessibility to all rooms and hoists. You may not need them now but plan ahead.

 

Nurture friendships with young, fun but responsible people who can drive, and display a maturity beyond their years, not for themselves, you understand, but they have Personal Assistant potential.

 

Test your remaining friends by constantly cancelling plans at the last minute and taking weeks to respond to their texts. If they don’t like it, you may as well ditch them now.

 

 

 

This then is my recommendation to you. I myself have opted for the all the gear and no idea approach to special needs parenting. On most days I actually seem like I know what I’m doing, on others-well there’s always cake and cynicism.

 

To finish I’ll share another gem from the mothership. She has always maintained that no matter how you parent, or what mistakes you make, as long as there is love in your home everything else will smooth itself out. And, in this at least, I think she’s right

 

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National Health Service.

Huge thanks to our wonderful National Health Service.

After Pearl’s surgery (bilateral submandibular gland removal plus unilateral parotid tie)

I bring you

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Morning update.
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.

In summary.

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.
So there.

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.

7. Did I mention the NHS? It is AMAZING!

 

 

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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.

 

 

 

 

She’s leaving…

From the old things to the new…

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

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Photo by Pixabay on Pexels.com

“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 ”

Songwriters: Cathy Dennis / Andrew Todd
Reach lyrics © Sony/ATV Music Publishing LLC, Universal Music Publishing Group
This is the last in the series of a blog a day for Horton.We have raised nearly £500! to add to the pot and leave the PSFA a fabulous thank you and goodbye donate here

 

 

 

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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A blog a day for Horton.

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Ch – ch – ch – ch – Changes.

Time may change me, but I can’t trace time.

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.

 

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All the feels, just all of them.

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.

 

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A thank you kiss from Mother of Pearl

 

 

 

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.

 

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A blog a day for Horton. 

 

Splash.

In which water is wet and children are too.

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.

The Horton Lodge solution?

“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!)

 

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A blog a day for Horton