Featured

The Wrong Kind of Snow.

An introduction to the trials and tribulations of our family life, additional needs, and unnecessary film and poetry references.

Ten years ago, I was a parent of two children, both bright witty and engaging (obviously). A boy and a girl.

I was also a Professional, a Speech and Language Therapist, I liked Science, investigation and finding answers.

Oh I was a wife as well (still am in fact, apologies Mr Pearlie J)

A control freak,  sometime depressive, a Church goer and Christian. A book mad, self deprecating, film loving stereotype. Not very house proud (no change there).

Living in a house of loud opinionated people suited me pretty well, but one amongst us felt the family just wasn’t finished, and as we are both the youngest of three we set to, to complete it.

I’ve worked with various types of acquired and developmental disorders in my job. I never automatically assumed that our children would be perfect, but having produced two who seemed just fine, was fairly laid back about this one.

Besides special children did not happen to people like me. There were none in my circle of friends. When I did see parents of these children they seemed patient, able to cope, well organised. They’d probably chosen, or been chosen, for this path in some mystical way. Also there weren’t that many children like that out there.

Naivety has been an abiding part of my life,  a constant course of hilarity amongst my nearest and dearest. I am in fact the person who believed the word gullible had been taken out of the dictionary. I had given birth to a Pearl of a girl at home, with no pain relief (look on my deeds you mighty and despair). Perfect. I had well and truly nailed this parenting lark.

At this point I will introduce you to Pearl. In a family of leaders she is noisy, self assured and communicative. Oh and nonverbal. Did I mention nonverbal? She communicates by pointing, shouting “yeah” or shaking her head and by signing biscuit. Or cake. She shamelessly uses charm, persistence and leadership skills (not bullying obviously) to bend the world around her to her will. Pearl is 9, she dribbles profusely, has learning difficulties. is still in nappies, can’t dress or care for herself, and although she can walk has significant mobility issues and uses a wheelchair or K walker. She has changed everything.

Oh and somebody forgot to tell her she was disabled.

If you have a mind to,  stick around and I’ll tell you what we’ve learnt , how to succeed in parenting (hollow laugh) and how to remove chocolate from a wide variety of surfaces.

You’ll laugh. You’ll cry. You’ll hurl .No? Just me then.

Incidentally we have no diagnosis. Just the wrong kind of snow changing our travel plans.

Short blogs about running.

How I started running and forgot I was no good at sport.

Deirdre O’Connell can you hear me?

I know I was a disappointment to you. Not all speed and golden limbs like the Team Captains. Crying on cross country runs and having no coordination did not make me a top pick in a PE class, although my lack of concern about my appearance made me more enthusiastic about hockey than some of the well coiffed  and manicured Essex girls I grew up with.

In my young day there were two types of girls. Nerdy swots, or gorgeous sportswomen

You can guess which category I fitted when reading this report entry, from the above Miss O’Connell  PE.

“Jane continues to try to give us her best, but PE is not her strongest subject area”

I followed up the crying on runs with throwing up during a time trial in a biology class about physiology. Genius.

Encouraged by parents who felt thinking was more important than running, and an “everyone in our family is rubbish at sport anyway” I stuck to regularly being bad at ballet-and gave up on everything non dance related.

So what changed?

The Gym. A place where you could turn up follow a programme and go home.A  place that children (when I became that stay at home mum) were not allowed.Suddenly fitness became attainable, and what is more I found that it affected my mood positively.

Then I became that other parent-a parent of children with additional needs.

I began to dream of running. (Excuse me I think my subconscious is showing)

eNpARO3cRdqZhcZFm3kQFg

However, how could I, a person who was interested in reading and thinking, the last person picked in every team, an enthusiastic but talentless dancer who had picked up a longstanding ankle injury during a ballet exam(yes truly) possibly run.

I pronate, I am gangly running couldn’t possibly be for (as my mother would put it) ‘The Likes of Me” could it?

I never did my D of E. Did I mention I’m not the sporty type? When the first born started to do her bronze I was desperately trying to pay her back for having been ineffective enough to have produced a sibling who took up all my time.

“Don’t worry about the sport challenge we can do Couch  to  5 k together”I said blithely.

And so, between caring for a small needy person, a middle child with latent Aspergers, and working part time as a Speech Therapist,I laced up my trainers and plodded.

Nobody told me what this meant.Couch to 5K if you haven’t come across it, is an easy accessible way to start running.You walk/run over an 8 week period until you can run for  5k. Despite feeling I couldn’t run for 5 minutes much less 5km we carried on.

I say we. We started in February. 3 weeks in Dof E girl who gets asthma got terrible hayfever and asthma and stopped, And I just couldn’t.

How the above has led to me signing up to run the London Marathon-a Marathon Miss O’Connell-might take a bit more explaining.

But that is a story for another day.

jx3zmDLJTRyJ0zEz8DlDhQ

 

If you feel inclined, sponsors for my Marathon challenge can be made here .They will both encourage me in my training  and help people ( like my wonderful Mum) living  with Alzheimer’s.

 

 

 

 

Strange Days

Sometimes days are too much.When escaping and hiding under a blanket can be classed as self care.

This blog originally appeared on firefly.

 

It’s one of those mornings.

 

I wake at 5am to hear a determined 13-year-old trying to exit her room by squeezing herself under the stairgate at her door. It doesn’t work as she is blessed with the booty of her mother’s mothers, so she gets stuck and shouts.

 

I left the marital bed at 1am for the spare room as the snoring had become deafening so I figure it’s not my problem.

 

Shaken out of sleep I realize I am a terrible mother and wife, and so am wide awake, while the escapee and snorer have both managed to fall back to sleep.

 

Just for fun I run a few of my favourite, back stories in my head. I am the star of these glorious productions, and while I consider myself, failing in a myriad of ways I make absolutely no concessions for my age, tiredness or general humanness in the tale. Each failure is utterly my fault and could only be resolved if I was an all-round better person.

I’m not.

 

Thirteen years of caring hit me like a brick on the forehead.

 

I was going to write about self-care this morning.

How important it was to eat the rainbow, do the things you love, exercise religiously and surround yourself with sunlight.

47483_157852777564008_6821741_n
Exercise religiously and with Pearllike determination

Instead I offer you this.

 

On the  mornings you wake up imagining that the teachers at school talk about you behind your back because you lost your child’s reading books again, these same books that your child only manages to listen to the first word of (This you understand ,not because she has huge cognitive challenges, but because you have not used your professional skills to gradually increase her attention span, but have let her watch The Wiggles on her iPad)

 

On these mornings forget the Instagrammable meals and to do list.

Get your child out of the house onto transport as soon as possible-stay in your pyjamas, cleverly disguised as exercise wear. In fact, if you like put your running tights on so you look like you’re just about to go out-they are as comfortable as pyjamas anyway.

 

Shut the front door. Turn off the phone. Find a carb if your liking and consume it with a cup of coffee.

 

Grab a cat if you have one. Put it on your chest and lean into the purr. This is an animal that knows the importance of rest. Let it be your teacher.

oHclvn6tQymHjTSu1leDnA
New mindfulness delivery from Prime

Turn on the tv (books are available but at the bottom of this well of tiredness who even has the concentration?) and watch anything you like without fear of judgment.

 

At some point you may have to get up to boil a kettle or eat something. Do not be drawn into a chore. Resume the position you only have a few hours before the school taxi returns.

 

Rest is important, vital for recovery and progress. It is not an indulgence it is a requirement. Nobody will die if you don’t put a wash on. There is absolutely another day tomorrow.

 

There are other days when getting up and setting yourself a task like getting dressed is the way forward. (if all you tomorrows are like today and getting off the sofa becomes an impossibility then another level of self-care needs to kick in involving a GP and extra help.)

 

Nobody told me there’d be days like these. They don’t tend to be ‘grammable.

 

Strange days indeed.

 

 

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

 

GgQ1vQEITlmXM3XdGjPlDw

The Social

This is unashamedly a shout out to an organization that has given Pearl something I did not think was achievable, an age appropriate  social life.

When my eldest two were little they did loads, Tumble Tots, Clubs, you name it they went.Admittedly this was often as much for my mental health as theirs, I needed to have a routine and get out of the house.

I tried to parent Pearl in the same way, we joined the local Gym Babes class, and went to mums and tots play groups.After her peers all graduated to Tumble Tots and it became obvious that she as the only two old lying on a baby mat in mums and tots, we quietly withdrew.

Besides I did not have any trouble filling my diary, I was constantly at the hospital, the CDC  and hydrotherapy.

Then Pearl started school, all this stopped.She was too tired after a day concentrating and cajoling her body into sitting. Also her friends lived over three counties,so she didn’t see school  friends often.

It’s a lonely place worrying about your Childs loneliness,and a sad place reflecting that all your twelve year olds friends are adults.

There was a local group that looked at activities for all, but it was on too late (6.30pm!A day of using your unruly muscles to stay upright meant Pearl was in PJs but then!)and also the other children were more physically able

So it was off limits.

Then Peal moved schools resulting in two things.Her school day was shorter, she was less tired and I was more than willing to fill up the time before bed.

Initially we attended a holiday session of Sports Club.I stayed with Pearl and we tried, volleyball, hockey, archery, skittles, and football There were lots of helpers and I was told that Pearl could be left while we went updaters for coffee.It took me a good few weeks to trust these people, but as I saw Pearl became comfortable, I felt braver.

From there she got onto a one to one Alpha Swim, again more physically disabled than her peers, the teachers made the necessary adjustments and she loved it.

But then! The highlight of her week!

Fun 4 All! A huge play centre with massive play frames and slides. I was well familiar with it as it was started by a fellow “ballet mum” when my middle child was small.We’d had parties and regular play dates there.But it was huge noisy, with impossible  climbing frames and was therefore not for Pearl

V65622ulS8CU9bqyJpTfmw

 

Father of Pearl shows us how it’s done!

 

 

Pearl could not manage  the play frames alone, she would need time to be talked through the movements she needed to make, it would be time consuming and need quiet and patience from other users.Have you ever been to soft play?Patience and queuing are not the strong suite of most of the clients who attend!

BUT every fortnight this same play centre is open to Pearl and all the other children in the local area who have additional needs. No one else.

It’s chaos! But extremely well controlled chaos, and importantly about an third of the usual number of children attend.

It is also staffed by volunteers and Cheshire East employees who work for Everybody Leisure, our local initiative to encourage activity for all. All. No matter what needs or challenges.

It is led by the wonderful Andy, who coordinates the programme,and who has a pretty astute view of all the kids abilities. It was also Andy who has organized through the scheme for Pearl to attend the weekly swimming lessons.

On the first week Pearl was extremely nervy, worried about noise and needing me to accompany her every step. She attempted going on the climbing frame, but was overcome by fear and came back down rapidly.She was by far the most physically and cognitively challenged there-and I wondered if I’d made an error taking her..

What a difference a term makes!

“Go.Car.Fun4All”-determinedly jabbed out on her communication book.

She flies through the gate to get in, hardly looking back,  and, accompanied by staff can make it right to the top of the frame, and down the giant slide.

The most normal, and age appropriate social events in Pearl’s life, events that I never thought would be possible are all happening regularly thanks to Andy and his team.

It is simply marvelous and shows that is possible to make local services inclusive to everyone.

Thank you to Andy and all the wonderful workers, and thank you to the LA for recognizing this is  effective and excellent service. Long may it continue.It has improved Pearl’s physical abilities and coordination, social interaction and it is surely good for her general health.

if you have local opportunities like this, and are concerned that your child won’t manage,give it a go-you might be surprised-I know we are!

 

 

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

img_1891

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!

 

 

fullsizeoutput_305

Hospital

I’m sitting here beside a sleeping girl, preparing to spend a night on a camp bed.

It’s my fault this surgery.Pearl drools massively and has already tried out a 98% effective tube tie.She was of course the two percent.

Pearl doesn’t have difficulty safely managing her saliva. She doesn’t get chest infections and aspirate her secretions, but she does drool.

Continuously and obviously.she drools Soaking her bibs and clothes rotting through dress fronts and causing other children to shrink away and pull faces.Her lips crack and her face gets sore.

So I told the Surgeon to do everything,all the excisions, extra ties everything do it!!

It would be finally and completely dealt with.

It is the one surgery that I have felt guilty about, because it seems cosmetic.

Drooling does not bother Pearl.In her world where she is self assured and loved and properly aware of her own worth she doesn’t care.

So I made the decision to cut and tie,and channel out and stitch and now she is lying beside me with two drains in her neck utterly exhausted.

I think of all the other Special parents who do this too.

Surgeries, electives, emergencies, sitting calmly by beds watching other parents come in who are terrified of their baby having an anaesthetic for a hernia Do they too feel for the ‘typicals ‘?

I find I want to comfort them at the same time as wanting to shake them and shout “it’s only a hernia and then you get to go home with a normal baby”

It’s not a competition this feeling of pain and trauma,of course their pain is just as real and terrifying as mine.But still.

I sit here,chatting with the staff,explaining Pearl’s problems to them for the millionth time.I intersperse this with careful explanations to Pearl checking she has understood.I’m so calm so professional.

Yesterday I tidied the entire house in the morning and have exercised so much in the last few days that I am quite exhausted.

Yesterday afternoon I was entirely unable to concentrate on anything and had to crash on the sofa watching trash.

But still sat here,writing I look like a woman who is coping. And I am.

And yet.

The desire to run screaming through the hospital is uncomfortably close.

The temptation to creep away and let someone, anyone, cope with making these decisions and dealing daily with the emotional fallout of all it. It’s there.And it’s real.

And so I send good thoughts and hugs and tears and virtual chocolate to everyone of you who sit calmly beside a child hoping that you have made, are making, will make the right decision.

Because you are.You have.And you will.

Nobody said it was easy. Nobody said it could be so hard,

I believe somebody sang that once.

This my friends is what love looks like.

A special shout out to the man who supported me in this decision and struggled with it having to be done because his fathers eye sees only perfection in his small girl.You are an awesome Dad.

Not Safe For Work.

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.

I digress.
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)

 

IMG_0647

 

Panicked reply.

“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.

“WILLYOUPLEASERESPONDTOMYTEXTS!!!!”

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.

I am a grown up

I am!

Happy Valentines day to one and all!

 

 

A Chair. With Wheels.

This post was originally shared on Firefly Friends.Hop over there to see a variety of excellent blogs about special needs.

 

A holiday, in Cornwall. Pearl decides to do some beach walking.

Unable to use her trusty kaye walker on the sand she relies on Dad’s hand, stubbornness and occasional crawling.

 

The family become silhouettes on the shoreline, and I am marooned with the new, cumbersome, wheelchair buggy, unwittingly about to take part in a social experiment.

 

The buggy is new, green, and slightly reclining, it also holds weights up to 14 stone.

It’s sunny. The small girl shape on the shoreline is digging. I have a book. So, I sit down on the deckchair substitute I’m minding.

 

Soon I start to feel uncomfortable. I’ve positioned myself just off the main path to the beach, so I can see the sandy explorers, and be as close as possible when Pearl’s energy runs out.

People are passing, as they have been since I arrived. Something however has changed and I’m not sure what.

 

As crowds stream past, adults look over my head, some glance at me and look away as soon as I catch their eyes and smile. Those who do say hello often accompany it with a head tilt, and a mild look of sorrow. I am in direct eye line with sandy dogs and small children, who feel free to stare, but generally return my smiles, even the dogs! (Famously

known for being a bad influence on children and dogs, I tend to over excite both!)

 

A couple my age are struggling up a steep embankment and having difficulty managing the climb, and a lively canine.

 

“Can I help you by holding the dog?” I ask.

 

“No, no, don’t worry we’ll be fine “comes a swift reply.

 

I look at their kind, concerned faces. Then it hits me.

 

I believe I’m sitting in a chair, but all the passersby think it’s a wheelchair. The feeling of dislocation has come from the reactions to a chair and a young(ish) disabled woman.

 

Ouch

 

I think of Pearl, and my best friend who has CP and is a wheelchair user. Do they get this? Every day?

 

I get up to help the dog walkers, who are astonished at my miraculous recovery.

 

This also gives me pause. What if I was an occasional wheelchair user (like Pearl) would people have an opinion on that too? Perhaps think I was inventing a disability`?

 

I chat about this to the dog walkers.

 

“I’m sorry”, he (who incidentally was one of the only people to look me in the eye and grin and greet me when I was in the chair) said.

 

“I just assumed”.

 

I talk about my feelings at swapping places with Pearl and say

 

“I think everyone should be made to sit in a wheelchair in a public place for half an hour it’s been an eye opener”.

 

Ms Dog walker agrees. Her best friend at school had been a wheelchair user, and she’d had a go in her chair.

 

“Didn’t like it, everyone treated me differently and nothing was in my reach or eyeline”

 

Do people look at Pearl like that? Does she notice? I hope not, but being nonverbal and having challenges with her understanding of verbal language, I’m sure she does. She is a very astute reader of body language and facial expression.

 

I would urge anyone to try this. I found the power in an exchange shifted very subtly. I was literally being looked down on. Not only that, but the burden of beginning an interaction, lay with me as people over empathized and felt uncomfortable about how to acknowledge me.

FullSizeRender-1

 

So to all of us who get around on two feet.

 

No cause for alarm.

 

It’s just a chair. With wheels.

To read other posts on accessibility check out #AccessLinky

 

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.