Little Steps Towards Disabled Access

In fact, most of the times I’d only go out with all three of my kids in an absolute emergency.

Up until fairly recently, David, who is now seven years old, still needed to be pushed around in a buggy.

Although I’m delighted that we are now at the point where he can walk with us, it usually wasn’t the buggy that make accessing places difficult.

Put simply, is was down to the boys being autistic, and more accurately, David.

David didn’t understand some of the basic safety rules about going outside our family home.

He didn’t understand about holding hands – indeed he completed resisted it.

Every road, car, doorway was a dangerous exit point.

More than not understanding about safety, he didn’t, and even now doesn’t, understand about how to act around other people in public.

He doesn’t know why people don’t like it when he shouts on in the cinema or jumps up and down by his chair in a restaurant.

And even if he did realise, there is no way he could stop.. His body needs to do these things to feel ‘OK’ or make sense of his surroundings.

Screaming and unpacking toys in supermarkets makes perfect sense to David.

Nearly 5,000 businesses across the UK took part in, ‘Autism Hour’, last year.

A initiative from the National Autistic Society (NAS) saw lights dimmed, background music reduced, and staff gain an understanding of autism for over 8,000 hours.

That’s the equivalent of 336 days, just shy of a year.

I’m delighted that autism awareness and acceptance is growing in our country but, the truth is, this is one hour of one day.

As it was set at 10am on a Monday morning, Autism Hour was probably not used by many parents of autistic children.

There are several autism friendly services which I treasure – including the autism friendly cinema screenings.

Many cinemas across the UK show one film a month understand ‘autism-friendly’ conditions.

The lights are on a little so it’s easier to see, the volume is down a bit so it’s not such an impact on the senses.

Generally people are more relaxed about what others are doing, more understanding.

We can take David to these showings.

Approximately 1 in every 100 people are autistic.

At my local cinema there are over 120 showings of movies this weekend – but there is only one autism friendly screening each month in the same cinema.

You might think given my, ‘only one hour’, and, ‘only one screening’, comments that I’m disheartened.

You’d be wrong.

Each one of these events raises the chance that my kids may end being able to function in society.

And I’m glad of it.

Other people see these screenings advertised, other people heard about autism hour, and so other people perhaps got a small clue into what helps my kids.

And that might just have an overall impact that means society, slowly, becomes more accessible for them too.

Mother’s Day (UK)

Who nurture, protect, cherish, pamper and spoil them.

Who have a full bedtime timely routine of, “storytime”, and a no snacks in the evening policy.

This was the type of mother I planned to be during my pregnancy.

Now the “nurture, protect, cherish, pamper and spoil them” is a given and kudos to me, I think I manage this exceptionally well.

BUT I’m a mother who is not perfect.

I am a special needs parent, I wouldn’t say my job is harder that anyone else’s; it’s just different.

I use chocolate and fizzy drinks as a bribery tool to get homework completed.

I use the iPad not only on meals out to keep my son calm and in an environment comfortable to him, but at home so I can have a lie in after a full week’s work.

I don’t do nightly bedtime reading as he very clearly is just not interested.

I do push good manners and discipline well.

I take him to museums, teach him to be diverse and culturally aware and, literally every day, I aim to teach him one new thing.

We say “I love you” at least 10 times a day –

I think love is the most powerful emotion to bestow on your child.

I see the world wide web put mothers down daily; people casting their opinions on how a “mothers” role should be carried out, how their way is the correct way.

You see articles like “50 easy ways to be a fantastic parent” or “four parenting styles for raising children”

These make me so angry, there isn’t a manual on this, there isn’t a guide that fits in with every family and these articles are damning and make an already difficult job seem destined to fail.

In our household, it isn’t all chocolates and roses on Mothers Day.

We have a son who, when he was younger, was not able to go to restaurants or day trips to busy places as these caused sensory issues and ended in a breakdown and tears from a fraught mum.

How is that a happy Mother’s Day for any of us?

Our Mother’s days now are a much more intimate affair, usually indoors where my son can relax and do his own thing

This, in turn, means that I can have a nice, relaxing day.

We exchange gifts with all the important women in our lives such as nana, gran, aunties but we do it all at our children’s pace.

After all, it is because of THEM that we are mothers in the first place.

I don’t need one day to feel the love from my child or appreciation for what I do – he is the greatest gift of all:

“You are the best mum in the world that I have ever had” – Cameron aged 9.

Celebrating Jess Chippendale on International Women’s Day

Today is international women’s day so I wanted to take a minute to tell you about a woman who has taken her daughters challenges and turned them into a positive for her whole family –

her story really is inspirational.

Jess is mum to a 7 year old daughter, Willow and a 6 year old son, Albie.

When Willow was 2 years old, she was diagnosed with a condition called SMA type 2.

This devastating disease robs children of the ability to walk, crawl, stand, sit and eventually swallow.

As you would expect, the first few years after a diagnosis like this were filled with anger, grief and uncertainty.

But it’s what Jess has done with all that emotion and turmoil that has inspired me so much.

Just like me, Jess had had lost all her confidence after Willow’s diagnosis and it wasn’t until her children were both at school that she felt she had the time or energy to do something for herself.

She eased herself back into society by starting a volunteering role one day a week at her daughters special needs nursery, a place she felt relaxed enough to regain her sense of being more than a mum.

But throughout all of this, Jess always knew that eventually she wanted to run her own business, because that would be the best way of working and earning a living around Willows hospital stays, appointments and all the things we all know stop us returning to a full time role.

She just needed to figure out what that business would be.

As Willow grew older, Jess faced the same problems I have faced with William.

Problems you might also be facing.

Getting Willow dressed was becoming a huge battle, getting her coat on would end up with Willow having a huge meltdown and Jess losing her patience.

So she began to search for adaptive clothing for children online.

But everything was boring, medical looking and not what she wanted for her beautiful daughter.

This led her to wonder whether it was possible to set up her own company selling fun, colourful, adaptive clothing.

She knew she couldn’t do it on her own, so during a drunken conversation with her brother he agreed to go into business with her and in November 2016, they set up Willow Bug.

A year on and Willow Bug has already gained massive traction and is a popular brand amongst families like mine, they’ve won the Small Business Sunday award run by Theo Paphitis of Dragons Den fame and they are going from strength to strength.

They sell such lovely products for children who use wheelchairs, in a lovely range of colours and prints (we have many of them!) and Willow is a fantastic model for them.

I love the idea that a woman who has faced similar challenges to me, has turned it into a such a positive by creating a fantastic business which not only supports her own family, but helps to make the lives of other families much easier.

Jess is exactly the kind of woman that inspires me and the kind of woman I’d love to see celebrated on international women’s day.

International Women’s Day

The seeds of it were planted in 1908, when 15,000 women marched through New York City demanding shorter working hours, better pay and the right to vote.

It was the Socialist Party of America who declared the first National Woman’s Day, a year later.

For the International Women’s Day in 2017 the theme was to focus on “Women in the Changing World of Work”!

The internet and articles stated how we should focus on women’s empowerment and how strong women are needed within important roles of society.

For the International Women’s Day in 2018 though the theme is “Time is Now: Rural and urban activists transforming women’s lives”.

This year, International Women’s Day comes on the heels of unprecedented global movement for women’s rights, equality and justice.

Sexual harassment, violence and discrimination against women has captured headlines and public discourse, propelled by a rising determination for change.

I have mixed emotions and can’t help feel that this year is a step back on lasts and think it’s appalling that we even have to be having these things addressed –

they shouldn’t be happening PERIOD!!

I’m stepping away from the headlines though and what the internet says about the day, I want to share what this day means to me and recognize some of the women I admire.

One of my best friends Holly who as a police telephone operator; was at work during the Manchester bombing on 22 May last year, who stayed on past her finishing time to take those distressing calls when people needed help the most.

Love you Holly Mou!

The lovely Beccy – a young mother of two; no family history of breast cancer who was diagnosed with this awful disease and has endured gruelling chemo, all whilst maintaining the loveliest smile and positivity.

My mother – became a teenage mum at 15 and went on to create and nurture five well-rounded individuals!!

She is always there to offer support, encouragement and recently Facebook live laughs………..

Bravo mama.

My sister; a single mum pulling a double shift to two beautiful boys on ASD spectrum.

Never has there been a person who daily puts everyone before her own needs.

Not only an exceptional mother to her own boys but an amazing aunty to her nephews.

I believe that when something is personal to you and those around you, you are more emotionally involved and feel the effects more intricately.

To be a woman in itself is powerful, we don’t need society’s approval.

Just being who we are is testament enough.

I thank all the women in my life for their strength, support and encouragement they show every single day!!

Wheelchair Accessible

Anyone who has had kids knows what a faff it is to get them in the car, strapped into their car seat and then squeeze all their bits and bobs in around them. When your child is a wheelchair user its about 500 times harder.

Until William was 5 years old we had a standard car. He sat in the back seat and we could collapse his wheelchair and pop it in the boot. But 5 year olds are heavy. And their wheelchairs weigh a ton!

Lifting him and his wheelchair in and out of the car constantly was doing my back no good at all. All that twisting was causing me hip problems and nipping to the shops was no longer a possibility.

That’s why we started considering a WAV (wheelchair adapted vehicle).

I didn’t much fancy driving a van around, and I loved my Touran, but something had to give and I was worried it would be my health.

We tried out a couple of different vans but settled on the VW Transporter which had enough space for Williams additional equipment to be carried with us when needed (toilet seat, hi-lo chair, even a trike would fit in the back with him).

But the down payment on these things is horrific, and with Motability you have to change your vehicle every 5 years so you need to plan for the future and consider whether you can make that payment again.

We were lucky in securing a grant from Motability which meant our down payment was significantly reduced, but we have no idea if we will be eligible for that again when we need to upgrade.

We chose a side loading lift for Williams wheelchair so that we could have him sitting close behind us and still be able to get him in and out of the van if there was additional equipment behind him.

It’s enough of a faff getting him in and out as it is without having to unload everything each time. You can read more about why we chose this one here.

This van has been a life changer.

Yes, it is still a faff to load him up and popping to the shops takes at least an additional 20 minutes, but we no longer have to lift him, or his wheelchair. My back gets a much needed rest and he is comfortable and secure in his chair.

We have recently asked Motability to provide an open insurance policy so that William can go out with his PAs (carers) in it.

It was simple to do, we simply needed proof that William has carers looking after him (a letter from PA, carers agency or proof of direct payments is adequate) and now anyone can drive it as long as it is for William’s benefit.

So if you at the stage when you know you need a WAV but you really don’t want one, don’t despair.

It is a big adjustment but it is also a game changer and makes life so much easier, I don’t regret it for a minute.

A Better Way to Change

Unfortunately, most of us know that, “changing facilities”, for our kids or loved ones with disabilities means, “the baby changing table”. most (but not all) facilities provide.

If you did not catch that, allow me to repeat myself:

The same table we use to change our infants on in public restrooms are the same tables that most of us have to use to change our older children who can’t use a toilet independently.

I can attest, but some of us have even had to resort to changing our children or even cathing them on the floor of that public restroom, or, going back to the trunk of our car to do so.

It really is degrading to put our children and loved ones on the floor of a public bathroom, when most are even appalled to put their own belongings on such a place.

I have signed many petitions, written plenty of suggestions/reviews, and shared many a post on Facebook for all who aren’t personally affected by this, to gain awareness.

Hopefully, the more voices behind the movement, the more we will be heard!

I do hope there will be one day in the future where I can have a higher weight limit, stable, proper changing facility for my son when I have to get him in and out of his wheelchair for catheterization.

I hope that we can have lower sinks, for those like my Oliver, who use a wheelchair and cannot wash his own hands unless I take him out and lift him up to reach.

I hope to find all doors wheelchair accessible with the automatic buttons to push them open.

I hope for so much, to include so many and to make them feel comfortable in a place where we require so much privacy.

One day, I do believe we will acquire all those things..

However, until then, I hope to back my voice for things like this through blogs and, then, to have it backed by other voices which are heard and supported by you all!

The Power of Innocence

Last weekend something lovely happened that gave me a renewed hope for the future.

It was a simple occasion of two families crossing paths at the perfect moment.

We had spent the afternoon in the alpine adventure park attached to our local ski centre.

Matt ran around supervising five year old Jenson’s excitable explorations of each and every corner of the park, while I supervised one year old Coby’s tentative attempts to walk the plank and traverse the rope ladder.

It was a typical family outing for us where Matt and I barely set eyes on each other for about two hours.

The most contact we had was a fleeting glance across the park and a quick swap-over of children to give each other a break.

We were accompanied by our lovely friends who also had their two young children with them.

We’d barely had any chance to catch up with them due to the respective demands of our broods.

So when ‘alpine bar’ and ‘beer’ were mentioned in the same sentence Matt didn’t need asking twice and we were heading up the hill to the comfort of the warm indoors.

The warm, bustling, heaving, children-everywhere, stressed-parents, indoors.

I took a deep breath, feeling the anxiety rise up inside me, and politely pushed the double buggy through the crowded bar and seating to find the last unoccupied table.

By the way – double buggies. How do parents of twins do it? Apparently they are “only four inches wider than a regular buggy” but heck!

That four inches can sure give you a whole lot of shit.

Not to mention having an oversized five year old with limbs hanging out just asking to be squished in doorways.

I could feel multiple eyes watching my efforts to appease a sensory-overloaded, slightly exhausted yet highly excitable boy who was refusing to sit down, while I was trying to speed-read the kids menu and remove twelve layers of coats and jumpers.

Two high chairs in one arm, a wriggly toddler in the other, and guiding the buggy into a corner spot with my hip, I managed to negotiate everyone into position.

Matt took leave to the bar “to beat the rush” while I grappled for Jenson’s iPad while throwing PomBears in to the mouth of my littlest.

Feeling proud of the relatively successful outing so far, I dared to look up and glance around.

Noticing only a couple of mums and dads curiously looking our way, smiling politely and quickly glancing away, I was relieved when I spied my husband returning with my well-deserved glass of wine.

Noticing that half of his Ringwood Best was already gone, I resolved to let him deal with the inevitable carnage that would ensue when Jenson realised there was a soft play area across the way.

The iPad worked for long enough to settle Jenson until his jacket potato arrived.

As predicted, before long Jenson spotted the play area and the dozens of children running in and out.

His tuna mayo was no longer of any interest and he launched himself out of his seat signing ‘friends’.

I gulped and exchanged the familiar look with Matt that said

‘You or me?

It’s definitely your turn.

You’re closest.

YOU OWE ME.’

I was relieved when Matt jumped up having read my non-verbal instructions and followed Jenson accordingly.

He returned alone about five minutes later looking unusually relaxed.

This was a strange turn of events.

When I gave him my perplexed ‘what have you done with Jenson?’ look he simply said ‘it’s ok, he’s made some friends’.

Now this is where it gets interesting.

Jenson’s idea of making friends is along the lines of wrestling WWF style, or big aggressive cuddles and sloppy kisses; either way it usually doesn’t go down well with other kids and we will then retreat promptly.

My curiosity got the better of me and I went and peered into the soft play area.

I was greeted with a sight that I honestly didn’t ever think would be part of this motherhood journey for me.

A group of children were standing in a circle around Jenson. He was turning to each, one at a time, to play ‘round and round the garden’.

One little girl was coordinating the affair, by telling Jenson who was next and helping him move his hands.

He was paying close attention and was clearly quite taken by her.

When you have a child that you didn’t know would ever be able to stand, speak or play, never mind have a basic grasp of social interaction and turn-taking, a revelation like this can really knock you sideways.

Just as I was drinking in this sight to behold, Jenson started to cuddle a child a little too roughly.

I approached and took him to the side, reminding him to use ‘gentle hands’.

The aforementioned little girl approached me and I could immediately tell why Jenson had taken a shine to her.

A stunning little lady with golden locks, engaging eyes and a warm smile, she told me that she liked Jenson’s accent.

Jenson doesn’t really speak sentences; he laughs a lot and will talk incessantly in single, somewhat incoherent words.

So this took me aback and for some reason I felt that this lovely little angel deserved an explanation.

So I mumbled something along the lines of thank you, he can’t talk properly because his brain doesn’t work like other children’s.

Well as if this little poppet couldn’t endear herself to me anymore, she then proceeded to say ‘that’s ok, he’s really nice’.

Simple. Pure. Innocent.

I retreated to my glass of wine with a little tear in my eye, eager to relay the story to our friends, who, having known Jenson for several years and have shared our torment in public situations, were equally in awe as Matt and I were.

Jenson remained in the soft play area for another twenty minutes or so, with some minimal supervision from Matt and me. We had established that there were three children that had taken Jenson under their wing, one of whom being the little fair-haired girl. They had established his abilities and limitations and were keeping him safe and including him in their games.

We sat, watched from afar, and chatted.

CHATTED! A simple luxury that had become a stranger to us both when out of the house with friends.

We decided it was time to take our little pickles home and so I went into the soft play area to retrieve Jenson.

As I approached the play area and saw Jenson was still happily interacting with his buddies, I had an enormous desire to locate the parents of the mystery girl who had befriended Jenson.

I glanced around at the gaggles of mums and dads and decided that it would probably be a silly exercise to approach strangers’ tables and ask if they own a little blond girl.

So I resolved that in this instance, I’d have to leave without passing on any recognition.

One dad was already in there gathering his brood, and I was delighted to establish that he was father to a little boy called Luke, who had been one of the three that was instrumental in Jenson’s enjoyment.

I mumbled something to the dad about how great Luke had been, and he was clearly delighted to receive my platitudes, and complimented his boy on his good behaviour with a fatherly pat on the head.

As the boy and dad left the play area, the dad called out ‘come along Freya’ to which Jenson’s little blond buddy scuttled out from under the soft play tower she’d built for Jenson.

‘Wait, Freya’s yours too?!’ I exclaimed before I could stop myself.

‘Yes they’re twins’ said the bemused dad: ‘Luke and Freya’.

Well at this point I was concerned about two things, crying in front of a stranger and looking like a bit of a fruit-loop in front of a stranger.

So instinctively I knelt down to Freya’s level (figuring that a small child was less likely to notice the growing pool of tears in my eyes than a grown up), and I said to her ‘thank you Freya, for being Jenson’s friend today, because Jenson doesn’t have many friends so today you made him really happy’.

Freya looked up to her dad as if to ask permission to talk to a stranger and quietly said, ‘We had fun’.

I stood up and mumbled something to Freya’s dad about his children being very special, and he was visibly touched and grateful for the compliments towards his twins.

As we were leaving Freya gave Jenson a lovely wave and Jenson excitably yelped and signed ‘friends’.

Taking stock of the situation on the way home, Matt and I agreed that it was a bittersweet scenario where we were celebrating such an ordinary, natural occurrence.

One that is taken for granted by regular families every day, and one that we didn’t allow ourselves to believe may ever happen for Jenson.

At home that evening, I had the overwhelming urge to reach out to the parents of Luke and Freya.

The fleeting exchange that I had with the twins’ dad was repeating in my head and I wished I could have been more vocal, more enthusiastic and more complimentary.

Been able to communicate to him just how significant his children had been in making for such a lovely experience for Jenson and for us.

But it was for fear of appearing emotionally unstable to a stranger that I had held back.

So of course I took to Facebook.

I recounted a short version of the events of the day, and at the end of my past I requested that everyone share it so that I may find the parents and share the thoughts that I’d been unable to share at the time.

Within two hours the post had attracted over 100 shares and lo-and-behold the twins’ mum sent me a message!

She was modestly grateful for the compliments about her children and explained that the children had been talking about Jenson a lot since their meeting.

She also explained that her eldest daughter had been present and in describing her to me, I figured that she was the older of the three special children that I had witnessed being Jenson’s friends.

We are all very much looking forward to meeting up soon and watching our children play together once again.

Jenson asks every day for Luke and Freya and I am told that they also speak of him too.

I have decided that if I am to take one thing away from this experience, it is to approach future such situations with less trepidation and more optimism.

Because I am sure there are many more children out there that would take Jenson under their wing just as Luke and Freya did.

And ultimately, if our children are learning this lesson of inclusion and understanding at this early stage in their lives, this can only be a great thing for the future.

Who is She?

Who is she?

She is the one doing it alone.

Who is she?

She is the one who has seven mouths to feed with a teammate to help carry the load.

Who is she?

She is the one who has the solutions and if not, she will seek them.

Who is she?

She is the one who laughs until she cries.

Who is she?

She is the one who owes nobody any explanation.

Who is she?

She is fiercely protective of those she holds within her heart.

Who is she?

She is the one who balances the cheques, brings in the income and ensures all bills are paid with enough left over to treat the ones she loves.

Who is she?

She is the one who went through hell, just to be able to hold you in her arms.

Who is she?

She is the one who had nothing; and now you’re standing in her Empire, the one she built from scratch.

Who is she?

She is often the last one to take a break from her role.

Who is she?

She is the planner, the scheduler, the one who remembers the dates and times.

Who is she?

She is the advisor to so many.

Who is she?

She is full of views, opinions, love and complications.

Who is she?

She is hard to understand but worth the time spent trying to.

Who is she?

She is the teacher, the solicitor, the home maker, the doctor, the race car rally driver, the architect, the researcher, the scientist and oh, so much more …

Who is she?

She is the one who fought for you to be here.

Who is she?

She is the one who decided to bring life into this world.

Who is she?

She is strong. Stronger than society likes to admit.

Who is she?

She is the one who gives time she barely has.

Who is she?

She is the one who lends an ear eager to listen.

Who is she?

She is the one who opens her arms for a warm embrace with an open heart.

Who is she?

She is independent.

Who is she?

She is the crafter, the dressmaker, the cake baker, the driver, the DIY- er and oh, so much more …

Who is she?

She is everywhere.

Who is she?

She is powerful.

Who is she?

She is Mother, she is Granny, She is Sister, She is Aunty, She is Cousin, She is Niece, She is friend, She is Godmother, She is Wife, She is Partner…She is a little mix of us, Women, who come in all wonderfully different shapes, sizes and colour.