Strange days indeed

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.

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 ad 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.

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.

See you on the other side

Power to the People!

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 had 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 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

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

A Chair with Wheels

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 becomes 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.


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 they’d 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.

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

No cause for alarm.

It’s just a chair. With wheels.


Pearl has moved to a new school.

We’ve moved to a new house.

In the process I have inherited, temporarily, a utility provider I wouldn’t have chosen.

One of the big four.

Impossible to get hold of on the phone unless you have an entire day at your disposal.

The house has been tenanted and I have also inherited all manner of hoo haa about the month it was empty and who was responsible for the gas and electricity before we completed.

I have had two months of letters, increasing in the level of threat, about an amount that I have paid.

All the friendly people I’ve spoken to have assured me. It’s all fine.

But the letters keep piling up.

After six weeks of Extreme Special Needs parenting style summer holidays, tonnes of change of address notifications, DLA and Blue badge renewal application, this extra admin is not sitting well with me.

I am angry. And not, slightly whingey, and passive aggressive, but incandescent with rage.

I am also organized.

More than a decade wrangling with the Local Authority about provision has prepared me for any and every, eventuality.

I have bills, dates, names of customer service providers and a free morning.

I am itching for a fight and ready to wave my disability by proxy card.

I’ve even started a shaming blog post and am prepared to use the full might of my twitter and Facebook followers. (Not as many as all that, but how are they to know?)

Then Sadia answers the phone.

She is delightful, friendly and concerned.

“Oh no,” “I think.

“I don’t really want to get angry with her”.

She utters the magic words.

“I am sorry Jane. Can I call you Jane?”

She’s lovely.

Of course, she can.

“This is not good enough it should never have happened.

Stay on the line, I’m going to sort it out right now”

Local authorities, Service Providers, Governments take note.

Sorry is a word rarely used, it may admit to legal liability.

Sorry though is, ‘the soft answer that turneth away wrath’.

Instantly, I feel listened too and valued.

The rage begins to ebb away.


There is, however, still some anger remaining, and I am determined to voice all of it.

“The thing is, I have a daughter with significant special needs and, I have enough to do over the holiday without phoning you every other day. She needs constant supervision, chasing this has been impossible.”

There is a pause, and a sigh of recognition.

“I’m sorry, I know exactly what you mean. I have a child with special needs too”.

The connection is made.

The problem is shelved while we discuss, trying to juggle work and family life in the endless six-week break, and the sheer exhaustion we both feel.

Sadia goes off, sorts everything out in a few short minutes and returns.

 I thank her and tell her she has prevented a complaint by her decisiveness and swift resolution of the problem.

“They are lucky to have a staff member like you.”

She laughs.

We both agree that patience, resourcefulness and problem-solving skills come as standard after a few years of parenting a non-typical child.

We briefly exchange stories about new terms, new schools and taxis, and wish each other well.

That is the story of how I made a phone call to a huge faceless corporation and came away having had an authentic moment of real connection, because she was good at her job, a great communicator, and because without realising, we were family.

This post comes with a heartfelt thanks to Sadia.

I wish you and your son all the best in the new school term.

Goodbye To All That

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.

Hard Work

You will lose some things, skills, friends and sleep for example.

Gain others, strength, fight and a dark sense of humour.

Job wise, work may become nearly impossible.

My membership of a professional body,degree and training finally had to be shelved.

It occurs to me, though that caring for Pearl on a daily basis has given me skills that I never knew I possessed, that may in fact have applications in the wider world.

I can scope out a building in seconds for accessibility, toilet potential and trip hazards. My eye is now finely tuned to a hidden step or an unexpected camber on a slope. I could perhaps work for the secret services, looking for hidden dangers or elements of surprise.

I can balance an extraordinary amount of things on the back of a wheelchair, and a surprising amount of mobility aids in the boot of a car. Maybe I could set up a small removals firm?

I can smile sweetly while staring daggers at people who park in disabled spaces, stare at small people with disabilities, or Local Authority managers. Politics, maybe running the country is my thing?

I can count out medication, understand, timings, half lives and storage, whilst knowing the side effects to at least 4 different kinds of prescription drugs. I might actually have a career in Pharmacy.

I can deal with an epileptic fit in a public place while outwardly maintain my composure. Ambulance Paramedic anyone?

However, dressing Pearl is one of my greatest daily challenges. If she doesn’t feel cooperative(and she doesn’t often) it involves her going floppy or rigid in turn. That and the ability I have to make my knackered middle aged face look reasonable with make-up (but Jane you look so well….) leads me to believe I’d be best placed to work in an Undertakers preparing the Dear Departed. And think of the peace!

How many skills have you had to master to succeed in your caring role?

Between us I’ll bet we’ve got everything covered.

Undiagnosed Children’s Day

I blame my grandmother who had an extraordinary kitchen garden, that she was constantly tending.

I love to wander around gardens quietly murmuring the names of plants I know under my breath.

Finding an app that supplements my knowledge was a day of great excitement.

Photograph a flower, the app matches it and presents you with the possibilities in order of likelihood.

When you have a child whose development or heath is unusual, rare or unexpected the approach a Paediatrician takes is similar.

Take a case history, do a physical examination, run it past an internal database of likelihood, then match that against test results.

If none of the results match a known condition, it’s likely that you will be given a general label like Global Developmental Delay, that describe the symptoms, without naming the cause.

If you are a parent this can be very difficult and provokes hard and uncomfortable questions

How will my child progress?

Will my child catch up with their peers?

Could we pass the condition onto further children?

Will my child die?

Is there a treatment?

Truly no doctor can answer these questions fully, even with a diagnosis, but they can use other knowledge to look at likelihoods,and point the family in the direction of tested treatments and (importantly) support groups.

Did you know that approximately 6,000 babies are born in the UK a year with significant difficulties that have no diagnosis?

I do, only because Pearl was one of these babies. For nine years we had two pages of A4 describing results of every kind of scan, metabolic and genetic test known to Science. But still no answers, and a growing list of questions, which were added too with every new medical event, or milestone missed.

The world finds this a strange and disturbing situation. Many people clearly thought we had the wrong doctors, or just were not trying hard enough.

It was an odd and lonely position to be in.

Fortunately, we found SWAN UK. SWAN (or Syndromes Without A Name) is the charity run by the Genetic Alliance to support parents and families of undiagnosed children, and the children themselves.

There is information, days out, online support and best of all a general feeling of belonging.

The Genetic Alliance is involved in continuing research, and because of the involvement of SWAN Pearl’s DNA was entered into a project called Deciphering Developmental delay, aiming to find firm diagnosis. Some children who took part still have no diagnosis, and those, like Pearl that do have very rare genetic conditions.

Pearl has novo mutation in GNA01 (with plenty more specific numbers, that are even harder to understand) It has been caused by the deletion of a single amino acid in the genome.

It is extraordinary to me that science can study the genome in such detail, that such a small change in genetic information can cause such big changes in development, and frankly that anyone develops ‘normally’ at all.

This year the theme of Undiagnosed Children’s Day on the 27th of April is Super Heroes.

Look forward to seeing Social Media filled with fabulous individuals whose superpowers including dealing with daily uncertainty about the future, and rocking a cape and mask.

Because of the Super heroes involved with SWAN, now we have Pearl, a diagnosis, our friends at SWAN and a whole new GNA01 family!

Which is (on my birthday, also Undiagnosed Children’s day) a whole new thing to celebrate!

Home Thoughts from A Broad

Things I have done and regretted, to save you the bother of trying them.

If you too are attempting to juggle a career, various pets and an assortment of non-typical children, you probably find yourself at the bottom of the pile.

‘Me time’ may involve going for a quick wee.

It is worthwhile making time for yourself, but keep your eyes open, your wits about you, forward plan and be aware of your environment.

If not,you may find yourself:

Brushing your Teeth with Savlon.

It is in a blue toothpaste like tube, it squeezes out onto your toothbrush in a white toothpaste like way. It is NOT however, nor does it taste like toothpaste. Despite probably making your mouth antiseptic and germ free it leaves your teeth feeling furry, like a bad hangover. Not one to try.

Applying Sudocrem to a small persons nether regions and leaving it in reaching distance.

The bonus of this is a quick indication of how far said small persons fine motor control, reaching balance and general determination has progressed, not easily measured on a standardized developmental scale.

The flip side is having to remove the zinc based white substance from the individual’s (let’s call her Pearl) hair, eyes nose and all furnishings and room décor.

On the last occasion (no I don’t learn from my own advice, yes it has happened more that once)Pearl went to school with the pallor and demeanor of a cheerful eleven year old Goth.

Putting Contact Lenses in without fully rinsing soap from your hands.

From distance it probably looked like I had perfected a new hip hop dance style, followed by a sudden realization of my own mortality and prolonged weeping.

Apologising for Things Done or Requested.

It weakens your case and is often a female default. Think, would a man do that? No? Then don’t. People may call you bossy rather than assertive, but frankly who cares?

Caring Too Much.

Not about your significant others, or your non typical offspring but worrying about what people think of you, your face, your hair, your opinion your child’s screaming.

Try not to wait until the advanced age of 47 to stop caring about these things. It’s a waste of time, you cannot control what people think of you, and chances are it’s not even what imagine.

Generally speaking I couldn’t care less.

See also taking yourself too seriously (although not your opinion which is valid and you are entitle to)

In Conclusion;

Life is too short to:

– Drink bad coffee
– Completely avoid sugar
– Spend time with people who don’t get you
– Persevere with therapies that make you or the child miserable
– Or eat olives (that might just be me)

Please feel free to step lightly into the carefree future.

You are most welcome.