It doesn’t seem like 5 minutes since we had world book day 2020, and yet here we are again!

Having missed the ‘official’ day due to the class having to isolate, the Dude and his friends finally got to join the fun this week; and despite having an additional week to sort out a costume, we STILL left it until the last minute as per usual.

The book of choice for my boys class was Jack and the Beanstalk.

After a short ‘discussion’ over what exactly Jack took from the giants house (I was insistent it was a magic harp, Mr V was convinced it was a golden goose – a quick check through the book ruled we were in fact both correct).

Sam was duly wheeled in front of the camera for his class video call clutching his Golden Goose (aka ‘pineapple duck’, a souvenir from a long-ago theme park visit), with his own beanstalk sticking out of the back of his chair…

Aside from the fun of costumes, world book day is a reminder of just what a precious commodity books and stories really are.

Not all children (or adults) enjoy reading – as a fully-fledged book worm and bibliophile, I am overjoyed that my boy shares my love of stories.

He may not be able to read them himself but one of his favourite activities is reading together.

Over the years we have read all sorts – from the picture books popular with very young children, through David Walliams stories and, Sam’s absolute favourite, Terry Pratchett and the Discworld series.

Reading to him is one of the highlights of my day, a time that is absolutely precious and which allows me to revisit old favourites as well as to discover new authors and books together with my boy.

Even Daddy enjoys sitting and listening as Mummy gives each character their own voice, Heaven forbid that I forget which voice belongs to which character!!

Reading together is so important for Sam, not just because he enjoys the stories and laughing at Mummy being silly; it also helps his vocabulary develop.

Sure, he is officially non-verbal, but that doesn’t mean he has nothing to say.

You just need to listen differently.

He understands everything he is told, and that understanding has developed partly as a result of him being exposed to language, stories and reading – it was even part of his therapy program for a while.

Stories also have the ability to take us away from reality, and to explore different places; just because he can’t read them himself doesn’t mean my son cannot enjoy the escapism and magic created in other ways.

So I will continue to put aside time to read to my boy; although, we’re coming to the end of our latest book… anyone got any suggestions for our next adventure?

Six years ago I didn’t know anyone with cerebral palsy, and I had never met a disabled kid.

Now I’m a proud parent to a 5 year old with Cerebral Palsy, and for Cerebral Palsy Awareness Month I’d like to tell you a bit about my son.

As a baby, Thomas was very cuddly.

He couldn’t be happier than when he was in someone’s arms.

He adored his big brother from the moment he met him.

They would often snuggle up on the sofa and watch YouTube videos together.

As he got older he developed a love of music and coloured lights.

His favourite toy was a ‘Beatbo’ a singing and dancing robot with a light up tummy.

He would spend hours pressing the buttons and squealing with laughter laughter as we danced around the kitchen.

As a young toddler he really loved Sponge Bob Squarepants.

We knew all the songs from the early series as it was played on repeat for months.

He loved the music in it and Patrick’s slap stick comedy made him his favourite character.

For a long time everything we bought was sponge Bob themed!

At around age 2 he discovered Paw Patrol and dropped Spongebob like a hot potato!

Paw patrol is still a firm favourite and his favourite character is Marshall, he finds him hysterical!

Now everything is Paw Patrol themed, his toys, his clothes and his bedding!

From very young Thomas showed quite the sense of humour, and like a typical boy he particularly enjoys toilet humour!

He enjoys playing pranks on people and struggles to keep a straight face when he’s done something and you haven’t noticed!

He’s a really sociable little boy, he loves spending time with his friends and people watching.

He’s always enjoyed a trip to the coffee shop, or around town.

He loves buying gifts for people.

He also really enjoys spending time outside, especially when it’s a little windy, he loves the feel of the wind in his hair.

He’s a bit of a thrill seeker so loves swinging high in the swings at the park, or a go down a fast slide!

At the moment Thomas really enjoys baking, he’s experimenting with recipes to see how they turn out, he does have a sweet tooth so tends to add extra sugar!! His favourite is chocolate cake.

His favourite book at the moment is Dear Zoo, and the Elephant is his favourite animal.

His favourite colour is Orange, and has been for a while.

He likes playing board games, you have to keep an eye on him as he will try and cheat, even though he doesn’t need to as he is also uncannily lucky!

Thomas has quite the temper when things don’t go his way, and he’s exceptionally stubborn like the rest of his family!

There can definitely be fireworks between him and his brothers!

Like a typical sibling he does like to wind his brothers up, and is often told off for smacking them around the head or pulling their hair.

He recently started school, he likes going to school, but doesn’t like having to learn.

He much prefers the play time with his friends.

All in all I think he’s a fairly typical 5 year old in many ways.

This March, I’d like to remind people that Thomas may have cerebral palsy, but it does not define him.

He, like every other person, is a beautiful, unique human who is many things outside of his diagnosis.

We’ve all been there.

You need to go to an appointment in the hospital and instead of just walking in, you have to negotiate wheelchair access for your child.

Or even a new parent having to now manage a pram in a world designed for able bodied people.

Our little man is a full time wheelchair user so we have to work out where the ramps etc are instead of just “walking into” the appointment.

That’s our life and it doesn’t bother me in itself, but whenever the access is poor, I feel a hurt bubbling up in me that is very unpleasant.

Jacob recently had an appointment in a hospital which we have been to before, so I felt relaxed about the access.

I’d hurt my back so was very grateful that we now have a wheelchair accessible car so I don’t have to lift our 18kg boy into his middle car seat (he’s a triplet and for some reason it’s the only way the seats fit).

The problem was a broken lift at the entrance.

I tried to ring the department so someone could come out and help me but there was no answer.

I felt panicked and angry all at once because he needed the test done, but how could I get him in?

There was no other choice but to lift him out of his chair, climb the eight stairs, then go back and get his wheelchair to drag it up.

Thankfully there was a chair at the top that I could use to sit him on while I went back for his chair.

I genuinely felt so hurt for Jacob that he couldn’t just walk up the stairs.

It stirs up feelings of sadness that your child is a wheelchair user so will face these obstacles for the rest of his life. It doesn’t feel fair.

My back was very sore at that point and as someone with Multiple Sclerosis (MS), I can honestly say that I felt every single step.

That small staircase felt like a mountain.

When I got into the department I told the receptionist their lift was broken which they apparently knew!

I was so angry, how could they know it was broken and not even put a sign up?!

You don’t see roads blocked without diversions in place, yet this broken lift would affect so many people with mobility problems with no alternative access being offered.

The dismissive response from the receptionist made me so angry.

Why couldn’t he see that it was totally unacceptable to ignore the fact the lift was broken?

You wouldn’t lock the doors then expect able bodied people to find their own way in, so why do it to people with mobility problems?

As a mum to my amazing little man who is a wheelchair user, I have to try and balance making him aware of his right to have access against making him “bitter” about not being able to climb these mountains.

He needs to be annoyed enough to fight for his rights yet not allow this to become something that will damage his mental health.

There will always be places that can’t be made 100% accessible, but a hospital should most certainly not be one.

For now, we’ll do what we always try to and simply tackle each mountain as it comes!

How do you define disabled?

Friends and contacts who know my family will know that both my twins are diagnosed autistic.

However, if you asked them which of my children is the most disabled pretty much every person would say my son.

After all he’s the one who attends an additional needs school and always has done since he was 4.

He’s the one who has no verbal communication.
He’s the one still in nappies at 12.
He’s the one who can’t read or write, needs 24 hour care, has challenging behaviour and learning difficulties.
He’s the one with complex medical issues.
He’s the ‘obviously disabled one.’

Yet both of my children are disabled; they just present differently.

Because my daughter attends mainstream school many don’t see her as disabled.

Because she can speak it’s assumed she has no communication difficulties.

Because you can’t see a nappy under her clothes it’s assumed she has no continence issues.

Because she can read fluently, write neatly in sentences, behaves and obeys and she has no learning difficulties she is clearly ‘not disabled.’

Because she hasn’t got complex medical needs she must be fine.

She looks ok so she must be ok.

That isn’t how disability works!

My daughter might be able to read and write and speak but she still has communication and processing difficulties.

She might attend mainstream school, but her social skills and emotional maturity are not that of her peers.

You don’t see her anxiety, her sleep issues, her complex eating issues, her lack of friends, her literal thinking, her sensory issues, her poor balance, her weakness and her absolute need for routine.

People are too quick to see the obvious and miss the hidden.

They assume if they can’t see something it mustn’t exist.

They think my daughter doesn’t deserve the disabled parking permit or allowances and I am accused of poor parenting, pandering to her and pretending she’s disabled, whereas the same people would never dream of suggesting any of this for her twin brother.

Yet, ironically, in many ways her disabilities are harder.

My son has no awareness of his own disabilities but my daughter does.

The expectations on my son are, sadly, very low.

The expectations on my daughter are often too high.

Getting support for my son hasn’t been too hard.

Getting support for my daughter has been a huge battle.

How do you define disabled?

Some very positive people prefer to answer that as ‘differently abled’.

In the case of my twins it is simply differently disabled.

Don’t judge disability or ability on only what you see.

Remember people can be disabled for all different reasons.

My twins exemplify that so well.

Multiple times a week, I am asked about the skills, accomplishments, and abilities of my children who have disabilities and medical conditions.

Medical professionals, therapists, respite providers, social workers, etc, must know this information in order to give us the best care and resources available.

I know this.

However, these inquiries never fail to give my stomach a twist.

My children are absolutely amazing and CAN do a million things.

They are intelligent, kind, unique, talented, miraculous humans and world-changers.

They also have disabilities and medical conditions that change what their lists of physical and cognitive abilities may look like compared to others.

When doctors are asking about my children, they aren’t asking about how kind they are, how funny they are, how unique they are (although I never let someone walk away without letting them see or hear about those things in my children).

They are wondering if they can walk, if they can swallow, if they can breathe independently, or if they can perform tasks listed as standard for their age group.

When I first became a mama to these sweet children several years ago, it made my heart sink to rattle off no after no in response to the lists of questions.

Over time I realized I had to approach these encounters differently so I began doing three simple things each time someone asked about my children’s abilities:

1. Even if the professional doesn’t ask, I list as many ways as I can think of that my children are wonderful that have nothing to do with physical abilities or medical conditions.
2. If my child is present, I direct the questions to them as much as possible. “What do you think, honey? Are you able to eat by mouth? Yes or no?” Simply including my child in the conversation-whether they can verbally answer or not-reminds the asker that they are speaking about a real, living human who has thoughts and feelings of their own.
3. I learned and implemented the power of the word yet.

It is one thing to answer a question with the word no.

“Is your child able to walk without assistance?” “No.”

Adding one simple, three-letter word, however, evaporates the finality and lack of hope in both the question and answer.

“Is you child able to walk without assistance?” “No, not YET.”

I add the word yet to just about every question asked, even the ones that will likely never be answered with a yes.

Adding a yet to my answers reminds me, my child, and the professional that we don’t get to decide what my child is capable of and there is always hope for improvement or mastery in the future.

It represents my commitment to never stop encouraging and challenging my children to grow, develop, and be the best they can be in whatever ways fit their unique personhoods.

Yet: I think it is a concept the world needs much more of.

What a world it would be if we could all view ourselves and others as mountains of possibility, beacons of hope, and exceptional human beings crafted with the ability to never run out of ways to gain, grow, and rise closer to our God-given potential.

We will soon be at the anniversary of the beginning of the first COVID-19 lockdown, which began with Boris Johnson’s address to the nation on the 23^rd March 2020.

A year on, and still in the third lockdown, every day seems the same; many of us are feeling a weariness, an overwhelming sense of exhaustion.

It seems to be affecting everyone, but I know from first-hand experience how hard it is for families of children with additional needs and disabilities.

It has got me thinking a bit about exhaustion over the past couple of days, and so I thought I would share my ‘thinking out loud’ in case it is of help to anyone else who is feeling a bit like this at the moment…

‘Types’ of exhaustion

The first thing that I thought of is that there are different kinds of exhaustion and that some can be more positive than others:

Physical exhaustion – this can come through lots of hard physical work, or maybe through exercise or sport. It can have positives as it builds strength and stamina, can be good for our health, can help us to sleep etc.

Mental exhaustion – this might be through hard work too, lots of problem solving or learning, exercising our brains.

It can have positives in that it can leave us tired and make it easier for us to sleep or can keep our brains sharp and ready for more.

Emotional exhaustion – this can be much harder, linked to feelings of stress and anxiety, the overwhelming worries that we might be carrying, the uncertainty about the future.

It’s more difficult to see positives here, no obvious ‘plus side’ to emotional exhaustion. It’s this kind of exhaustion that many are experiencing at this time.

Subconscious exhaustion – I wonder if there is a kind of underlying ‘subconscious exhaustion’ that is made up of the suppressed feelings that we have.

There has been a big increase in people having unusual dreams over the last year and this has been attributed to people’s subconscious minds trying to make sense of a world that seems to have no answers at the moment.

What can we do about exhaustion?

There might be other kinds of exhaustion, I’m not a medical professional so these are just my own thoughts, but even if we focus on these four types of exhaustion, are there some things that we can do to help ourselves and each other here:

If there are types of exhaustion that can be positive, and types of exhaustion that are mostly negative, I wonder if there is any link between them that can be helpful.

For example, if our emotional exhaustion is making it hard for us to sleep, could exercise to make us more physically tired help us out?

If focussing on our challenges and clearly thinking through any problems we are trying to deal with helps us to not carry those problems into our sleep, so that we don’t have dreams (or nightmares) about them, maybe that can help our subconscious exhaustion.

Old wisdom, but true

But what if the issues we’re struggling with, especially as parents of children with additional needs, just seem too big?

What if we can’t solve them by thinking them through? What if we are just too exhausted, in every sense, to even try?

Well I think we all know that doing nothing about it is just going to make it worse.

The worries will get bigger, the exhaustion will grow stronger, and we will become less and less able to do anything about it until eventually, possibly sooner than we think, we collapse or have a breakdown.

And then we are no use to anyone.

There are a number of things that we can do though. Things that can help us to start to make things a bit better; to start to push back against the feelings that are overwhelming us.

Here’s two bits of old wisdom that come to mind for me:

1. Name it and shame it

So often, what our darkest fears and worries are saying to us is what we believe.

Our thoughts go to the worst, darkest place; the most awful outcome possible, even though the actual likelihood of that outcome in reality is miniscule.

There are plenty of alternative outcomes possible, some are still hard but maybe better than the worst; some are OK and manageable, some might even end up to be positives.

Name the worst thing that could happen and shame it, stare it down.

Tell yourself that this worst outcome is highly unlikely, it isn’t the outcome that you are going to allow to happen, and focus on the better options.

What do you need to do to make those better outcomes happen? What help might you need and where are you going to get it from? Make a plan and take back control.

• Tell someone you trust

Part of making a plan and taking back control is telling someone you trust about it. It might be a friend or family member, it might be a professional, but whoever it is tell them what is eating you up emotionally and subconsciously and tell them about what you are going to do about it.

Share your plan with them.

Sharing with someone else does several things.

Firstly, it gets it off your chest; it’s amazing how therapeutic it is to share something that’s been a burden to you for so long.

It instantly feels better.

You might be ‘a bit ranty’ as you share, but if you’ve picked the right person then they will understand.

Secondly, you are now accountable to someone to get your plan done; there’s no going back now.

Thirdly, they can bring wisdom and shaping to your plan, helping it to be even better.

Especially if you are exhausted, your plan might need a little help and so you can work on it together.

I’m reminded of that line in the film Crocodile Dundee, where the central character is asked what he does when he has a problem. Does he go to a Psychiatrist? “Nah; – back there, if you got a problem, you tell Wally. And he tells everyone in town — brings it out in the open — no more problem.”

Maybe that’s a bit extreme, we might not want everyone to know, but having a trusted person that we can share with certainly helps; bringing it out into the open a little is positive!

If you are feeling overwhelmed and exhausted, know that you are not alone.

But do something about it before you reach that point of collapse and breakdown. We’re no use to anyone, no use to ourselves, no use to our children then.

Name it and shame it, make a plan and share it with someone you trust.

Don’t put it off to tomorrow, do it today, you’ll immediately feel more like your old self and will look forward to that more peaceful nights sleep tonight!

Sleep well,

Mark

I have had years of working out how best to calm my child when things go wrong.

From walking the floor with him as a baby, to long car rides until he fell asleep to taking him places to meet his sensory needs like swimming and soft play.

Routine, space, familiarity, school, being calm and lessoning demands all became part of keeping him safe and keeping the rest of us safe.

But then 2020 changed everything.

All the strategies I had in place disappeared when lockdown happened and within days my son returned to being aggressive, confused, angry, and very challenging.

His world was turned upside down and he didn’t understand why. 

I had to adapt and quickly!

With heavy restrictions and rules in place for everyone and a ‘stay at home’ law in place life for us became very difficult.

When the school taxi didn’t come, when he asked for places using cards and I had to say no, when church closed and we stopped going out he became more and more angry. 

He was communicating confusion and upset and as an adult I needed to remain calm. 

So we started walking. 

First I took him to a familiar place we visited regularly.

Then sadly that too was closed.

I took him more local walks which at first made him even more anxious and aggressive.

He would refuse to move. He would scream. He would hit me.

I totally understood why…this wasn’t what he was used to and he had no idea where we were going. 

Finally the familiar place reopened. 

Mostly I take him there to walk to calm him, regulate him and meet some of his sensory needs. 

But sometimes we walk to calm me as much as him.

The last 12 months have affected me.

I am exhausted, sad and weary. My patience isn’t what it used to be and I can feel my own anger brewing some days too.

While I can verbalise my thoughts and have greater self control than my 12 year old non verbal autistic son I have discovered that in many ways we have similar needs.

We both need fresh air.

We both need a change of scenery.

We both need routine. 

And we both need our walks to calm us down and regulate our emotions. 

One day my son may be back at school.

Even when he does I might still be doing the same walk to clear my head because it’s going to take a lot of miles to get over all that has happened in the last 12 months. 

I’m generally a positive person; looking for the good in the world, trying to see the best in people, and dusting myself off to bounce back again when things go pear shaped.

I have an internal dialogue running on a frequent basis, and when things seem to be going in the wrong direction, I’m often found to be giving myself a harsh talking to.

“At least we have a roof over our heads”, “at least we have food on the table”, “at least Heidi is stable”, “at least Heidi is here…”.

A long list of reasons why I shouldn’t grumble.

But in a recent training course (Mental Health First Aider training, highly recommend), I realized that my pep talk wasn’t really helpful.

I also realized that I have also used my “at least…” take on events with other people, to try and find a silver lining, or a glimmer of positivity when things have been tough.

It’s with the best of intentions and I’m sure (I hope!) I’m not alone; we want other people to be ok, we want to show them what they have, all the good stuff even if they aren’t seeing it themselves.

So “at least…” has never been with any malice or meant to be condescending.

What I now know, is that sometimes you just need to acknowledge that things feel rubbish.

Yes, there is “always someone worse off than you” (how many times have you heard that one?), but your feelings (and mine) are valid and need to be recognized.

Telling yourself “at least…” probably only makes us all feel worse.

I know it did with me!

I felt awful for having a whinge about something (and let’s face it, it can be the smallest thing that tips you over the edge) when I knew that other people were having a really challenging time in comparison.

I felt guilty.

But the feelings of guilt didn’t take away my other emotions, so I ended up a big unhappy ball of whinginess and guilt!

My inner voice is now trying to be much more productive, and kinder to myself, and I would encourage you to do the same, if any of this sounds familiar.

Even the most positive of people can have an off day or week, and especially in current Covid circumstances, it’s more than expected.

We all know it’s ok not to be ok, but if that not ok is lasting a little too long or is having a significant impact on your daily being, then please do have a chat to someone.

I genuinely believe that asking for helps is a sign of strength (as you can see from the pic we’re in the Strong Girl’s Club).

And if someone comes to you feeling anxious or low, and your go-to phrase (like me!) would have been “at least…”, why not try “I’m so sorry you feel that way”, “that sounds like it’s really difficult”, or “how can I best help you?”.

I’m sure they’ll be glad to know you care.