10 Quotes That I can Always Relate To

I don’t know if it’s just me, but as a so-called ‘special needs parent’, I love a quote. Since having my son Brody nearly 10 years ago, I’ve been drawn to them. They’ve been on the walls of our home, saved as screenshots on my phone and on countless social media posts of mine. They make me feel seen. Like I’m not alone. And at times they’ve given me strength.

Here are a few favourites of mine.

  • “Comparison is the thief of joy”

Whilst it’s completely natural to compare your life to others, it’s never a good idea. When you’re struggling with something it’s an easy thing to do, but it really is a thief of joy. Don’t compare. Chances are you’re comparing to something that isn’t quite as it seems anyway.

This leads me nicely on to quote number two…

  • “Life is never like the controlled content of someone else’s social media”

Everyone is guilty of posting ‘Instagram’ photos rather than the reality. After all, who wants to see the not-so-cheery stuff? But just because you can’t see it, it doesn’t mean it isn’t there. Everyone has bad days. Everyone has troubles and worries and things that they don’t want to put on their social media. Social media is just the highlights reel – remember that.

  • “Normality is a paved road. It’s comfortable to walk on – but no flowers grow on it” (Vincent Van Gogh)

Ooh this is a good one, isn’t it? And so true. My son Brody has taught me many things but one of the greatest things I’ve learned from being his parent is that happiness and beauty can be found in the simplest things – and it’s something I feel privileged to really *get*, thanks to him.

  • “Just because someone carries it all so well, doesn’t mean it isn’t heavy”

Preach! Every time I see this quote, I think of the parent carers that I know. Their strength and resilience to fight for services, raise awareness and live their lives with some pretty heavy stuff.

On the surface, family and friends often think they are fine because they appear to carry it all so well.

They get told that they’re superhuman, but newsflash – we’re not. We are just like you. They carry the load for the same reason every parent of any child does – love. But that doesn’t mean that it’s not heavy. At times, it’s crushing.

  • “Happiness is letting go of what you think your life is supposed to look like, and celebrating it for everything that it is” (Mandy Hale)

This is one of my all-time favourites. When I first saw two pink lines on a pregnancy stick, admittedly Brody wasn’t the child that I imagined. That sounds awful out loud but it’s the truth. But you know, I am so lucky that he is the child that I got. I love him more than life itself. Once you accept that your life might not take the path you expected you find acceptance and happiness in what you have. And what I have is a beautiful, awesome boy who I celebrate every day.

  • “It’s not all sunshine and rainbows but a good amount of it actually is”

Sometimes life is heavy and hard but there are lots of good days too. That’s always worth remembering.

  • “Always look at what you can do” (Henry Fraser)

I love this quote by mouth artist Henry Fraser, so much so I bought his painting saying just that. I want my children to focus on what they can do, not what they can’t. It’s something we all should do.

  • “The siblings of special needs children are quite special. Absolutely accepting and totally loving, from birth, someone who is different mentally, and has a different way of seeing the world, is a wonderful trait. It’s a trait I wish there was another way of getting, but there isn’t. And it does involve a degree of not having it fantastically easy” (Sally Phillips)

I instantly related to this quote by the actress Sally Phillips, who is a fellow member of the tribe. My daughter Sydney is an amazing big little sister. She understands Brody better than anyone else and is fiercely protective of him. She is very special.

  • “Count your rainbows, not your thunderstorms”

I saw this quote for the first time the day after I miscarried my second child. I was overwhelmed with sadness, and it was quite a tricky time in my life where I thought I must have done something seriously bad in a past life. Do you know when it’s literally one thing after another? Anyway, I remember Brody looking up at me and just giving me life. It’s important to count your rainbows when you can.

  1. “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not” (Dr. Seuss, The Lorax)

Being Brody’s mum has made me care a lot more than I used to. Particularly about things I once never considered. I work for the charity PAMIS (Promoting A More Inclusive Society) on the Changing Places toilet campaign. I worked with Tesco on the Tesco Health Junior Nappies. I am a member of my local Disability Access Panel. I am proud ‘that mum’.

This quote rings so many truths. There is so many battles to be fought when you have a disability. Accessibility. Inclusion. Discrimination. Acceptance. The disability price tag. The list is endless.

We need everyone to care so that things can get better. Otherwise, they won’t.

10 Things I Want to let You Know About Christmas for Our Family

  • Guessing what your child wants for Christmas is hard

For those of us who have children who cannot talk or have difficulty communicating, the guesswork each Christmas is hard. We wish our children could let us know what they want and worry about letting them down. Can you imagine what it’s like having a child who is unable to tell you what they truly want? The pressure of getting it right is huge and heavy.

  • We won’t be offended if you buy our kids presents that are aimed at children much younger than them.

It goes without saying, all gifts are appreciated, but we would much rather that you bought a gift that our child could play with than something that might well be ‘age-appropriate, but they cannot use. If in doubt, just ask us.

  • We are tired.

Admittedly, not helped by the dark and colder days, but we are tired. The change of routine and our children being off school coupled with trying to navigate Christmas so that all members of the family are happy is quite frankly, exhausting. You are probably tired too but SEND parents just so happen to take it to another level.

  • Our children might be older, but please bear in mind that they might still *believe*

The big, white-bearded man in the red suit might be a regular visitor to our home for years to come. He’s quite possibly a forever thing.

  • We make our own Christmas traditions and that’s okay.

Our Christmas might look different to yours as we’ve learned along the way that we need to make our own traditions and you know what? That’s okay. We recommend that everyone does the same.

  • We eat what we want.

Speaking of traditions, maybe a turkey doesn’t feature at our table. Maybe everyone has a completely different meal. Maybe foods that feature ordinarily still feature on our Christmas day. It’s no big deal, we just eat what we want.

  • Our friend the ‘iPad’ may well be a big part of our day

Whether it’s for entertainment, distraction, communication or comfort, our child might be using their tablet or iPad a lot during the festive period, and we don’t mind, so you shouldn’t either.

  • Our child might not open their presents straight-away

Some children become overwhelmed with presents or simply aren’t as interested as other children in receiving them. Please don’t take this the wrong way. We appreciate your kindness, and the present will be opened in good time, at our own pace.

  • We really appreciate the family and friends who stick with us and support us

To those of you who stick around, understand and support us, particularly during the holidays, we might not say it often enough but thank you. We love and appreciate you more than you could ever know.

  • We have to do ‘whatever works’ – it’s our motto and it’s a must – please don’t take it personally.

Our child’s needs and happiness are paramount, and this means we live by the motto ‘whatever works’ 24/7, 365 days a year – including Christmas day. Sorry if this means we can’t have Christmas dinner at your house or go to a festive event with you, but please understand that we need to do what works for our family.

5 Ways to Make it Through this Christmas

We all have an image in our heads of what we think the perfect Christmas should look like. Full of traditions, happy and smiling children, no arguing – you know, very jolly, merry and bright.  The truth is I very much doubt that’s the case in any household, no matter the circumstances. But when you’re walking in our shoes, the pressure can be tenfold because we tend to be extra hard on ourselves.

Here are 5 ways to make it through the festive period.

  • Create your own traditions and do whatever works

This. All of this. Do whatever works for your family and create your own traditions. Maybe that’s an untraditional Christmas dinner. Maybe that’s the iPad featuring a lot throughout the day. Maybe that’s Christmas Day in the safety and reassurance of your own home. Go with it, do what works for you and don’t worry about what others are doing. It’s so important.

  • Be honest with family and friends

Yes, it would be nice if they just *got it* but let’s face it unless you’re walking a similar path, chances are you don’t. So let family and friends know what works for you. Accept help when offered. The ones that listen to and stick around to support you are the ones that matter.  

  • Don’t put pressure on yourself to go to festive events

Perhaps visiting Santa’s grotto isn’t something your child would enjoy, or a festive outdoor event would be too busy or loud for them. Don’t put pressure on yourself to do these things just because you feel you should. They don’t matter. What does is your sanity and your child’s happiness.

  • There is no shame in doing some things separately as a family instead of all together

I often take my daughter to things that I can’t take her brother to for a variety of reasons – access, sensory issues, their different needs. This means that sometimes we split up to do things as a family Yes, it isn’t the ideal scenario, but we must do what’s best for both of our children and think about both of their needs. And I don’t feel any shame for that (although of course there is always a side of mum guilt because it comes with the territory).

  • Be kind to yourself

BE KIND TO YOURSELF – I’m raising my voice for those of you at the back. This path we’re walking isn’t always easy and the journey is a long one. Try not to be too hard on yourself. You can only ever try your best. One step at a time.

Special needs parenting: Limited Edition

Did you know that this Friday, 30th April is Undiagnosed Children’s Day?

Did you know that approximately 6000 children are born every year with a genetic condition so rare that science hasn’t yet discovered what it is?

Did you know that many children remain undiagnosed into adulthood?

I didn’t. Well not until I had my son Brody.

Before he came along I didn’t know that being undiagnosed was even possible. I naively thought doctors had the answers for everything. That science had it covered.

No one really tells you your child is ‘undiagnosed’. You kind of fall in to this land of limbo. In our case I pieced together the lack of answers and global development delay label that my son had been given around the age of 3 and stumbled across the charity SWAN (Syndromes Without A Name) UK.

It was through SWAN UK that I finally found somewhere we fitted in – amongst other beautiful misfits.

Brody is 9 years old and has diagnoses of epilepsy, autism, megalocephaly and hypermobility.

He also has a foot deformity and unstable ankles.

The best way to explain him being ‘undiagnosed’ is that his doctors think that although he has these conditions and symptoms they do not explain the bigger picture.

He has no overarching diagnosis. Up until very recently genetic tests all came back ‘normal’.

This is the first Undiagnosed Children’s Day that we are closer to finding an answer.

They have recently found a gene change in his X chromosome that may explain his symptoms but it’s early days in researching it.

Geneticists in France have found half a dozen other males with the same gene change presenting similar symptoms to Brody.

One day, this gene change – ‘SLITRK2’ – might be Brody’s rare diagnosis.

It’s a rollercoaster having a child who is undiagnosed.

As the years have gone by, I have got used to the unknowns, but in the early days it was really difficult.

I just wanted answers and no one could give them to me. I’m not going to lie, deep down I’d still like answers.

After all, no diagnosis means no prognosis. But time teaches you that really no one has all of the answers, diagnosis or not.

And when you have a child who is undiagnosed the reason that they are is because they have a really rare genetic condition.

So if we are ever in the situation of science discovering what it is, we are at the very beginning of finding out what it means and in reality won’t know much.

The truth is Brody is much more that being undiagnosed.

He is much more that the diagnoses he’s been given and the symptoms that he has.

He is Brody – a happy-go-lucky, raspberry blowing boy who has taught us what’s important in life. He is our biggest teacher and greatest lesson.

He is a limited edition.

Going to the toilet is a basic human right

Parents of disabled children who are doubly-incontinent all face the same horrifying dilemma every time they leave the house.

Where can they be changed?

It wasn’t until my son Brody was around the age of 3 that reality crept up on me.

I admit, I was naïve and lived in a disability- free, ignorant bubble until I had him.

At 3 he was fast outgrowing baby changing tables and it was then that it hit me that there was soon to be nowhere to safely change him.

My horror at this led me to discovering the Changing Places toilet campaign.

In case you haven’t heard about Changing Places toilets I’ll describe them to you.

They are larger than standard disabled toilets – around 12m2.

They also have a ceiling track hoist, height-adjustable, adult-sized changing bench and centrally placed (peninsular) toilet.

They are life changing and yet in reality meet a very basic need – going to the toilet.

The truth is without Changing Places toilets hundreds of thousands of disabled people in the UK are isolated and excluded from society.

If they go out they have no option but to ‘hold it in’, remain wearing a dirty product or be changed in an unsafe, unhygienic and undignified place – like a toilet floor.

Just let that sink in.

Imagine changing someone on a toilet floor.

Imagine going out for the day and having no access to a toilet.

This is the reality for many. This is our reality. I’ve changed my son on a toilet floor and in a car boot. It’s heartbreaking.

Thankfully the Changing Places toilet campaign has come on leaps and bounds in recent years thanks to many fantastic campaigners and the Changing Places toilet consortium.

But the fact remains there are more toilets in Wembley Stadium alone than there are Changing Places toilets in the UK.

Frightening isn’t it?

My passion for Changing Places toilets has taken me to the UK and Scottish government and it’s led to my job as Changing Places Campaign Coordinator for the charity PAMIS (Promoting A More Inclusive Society) in Scotland.

Most importantly it’s given me the opportunity to meet some truly amazing people who are all fighting for the same thing – a basic human right.

If you have any question about Changing Places toilets or want to help with the campaign contact the Changing Places toilet consortium.

For questions about England, Wales and Northern Ireland email Muscular Dystophy UK at [email protected].

For questions about Scotland email PAMIS at [email protected].

Autism Awareness Month

This month is Autism Awareness Month and I’d like to share with you a saying that I think is so important when it comes to raising awareness of autism.

‘If you meet one person with autism, you meet one person with autism’.

Every person you meet with autism is unique and different to the next.

Just like every person you meet without autism is.

There are so many stereotypes when it comes to autism and a lot of ignorance.

People don’t understand that it is a spectrum disorder and affects people in different ways. 

For example, it’s often an assumption that people with autism don’t make eye contact or have memories like Rainman

I can tell you that my son Brody, who has a diagnosis of Autism Spectrum Disorder, makes eye contact with everyone he can and has no similarities to Rainman whatsoever (apart from being awesome).

Brody’s autism doesn’t define him but it is part of who he is and affects him on a daily basis.

Sometimes the symptoms of his autism can be hard for him.

He is non-verbal and struggles to communicate his wants and needs.

He has sensory issues that can be completely overwhelming and frustrating. The sight, smell, sound or touch of something that is too much for him can cause him great distress.

He has absolutely no danger awareness and a high pain threshold. The combination of the two is at times quite terrifying.

But Brody’s autism is also part of what makes him amazing.

I am proud to be his mum.

He has an infectious smile and laugh.

He loves to blow raspberries and wave to people. He loves jumping. He loves music. He loves trains.

He is YouTube’s biggest fan and currently likes watching a lady in Texas called Miraenda and her robots on repeat as well as various clips and videos about the Polar Express.

He is a brilliant boy, my biggest teacher and favourite lesson.

Let’s face it, we shouldn’t have to raise awareness of autism but awareness is key in understanding and acceptance.

If you would like to raise awareness here are some things you can do during Autism Awareness Month…

  • Join the National Autistic Society’s ‘Super 7 Challenge’ choosing your own 7 themed activities.
  • Fundraise for charities that support people with autism like the National Autistic Society and Mind.
  • Ask your child’s school and your workplace to get involved in raising awareness and fundraising.

Thank-You Mum

Without my mum, I would be lost.

There are very few people who, “get”, Brody completely.

Understand his non-verbal cues.

Understand his very real lack of danger awareness (and that we’re not just over anxious helicopter parents).

Understand his wobbly legs.

Understand his sensory issues.

Understand his routine and that if you put his shoes on, you better be ready to leave the house in T minus ten seconds…

There are also very few people who really understand what our life is like or know when I’m struggling.

Obviously there are a million amazing things that come with being Brody’s parents and we wouldn’t be without him.

But life isn’t always straight forward when you have a child with disabilities – and a lot of people really don’t get that.

My mum does.

Mum is the reason I’ve been able to keep swimming on the many occasions I thought I might sink a little (or a lot) over the past six years.

Mum is the reason hospital appointments aren’t completely stressful.

Helping me through the waiting room chaos.

Watching the kids so that I can talk to the doctor.

Absorbing information so that it’s not just my brain trying to process what is being said.

And then letting me offload, rant or cry about it all afterwards.

Mum is the reason I don’t go insane in the school holidays.

Mum is the reason I don’t permanently have grey roots and can visit a hairdresser.

Mum is the reason I can go out and nag meet with various places about installing Changing Places toilets every month.

Mum is the reason we can have a night away once or twice a year and some welcomed rest without worrying or feeling guilty about the kids.

Mum is the reason I’ve got this.

And I don’t think I’ll ever quite have the words to thank her enough.

I’m Ashamed That We Live In a UK that Allows This To Happen

There are so many issues that many, many people in the disabled community face due to a lack of thought and care.

I was ignorant to the world that I now live in and naively assumed that the Equality Act (2010) and decent morals would cover most of the issues that our community faces.

Sadly, this isn’t the case.

This Disabled Access Day I’m aware that there are so many issues that affect the disabled community in the UK.

I’m aware that the issues my family face are just a fraction of those faced by others.

I’m aware that ignorance is bliss and the right to access is a fight we should all be fighting.

Because if you don’t shout about access issues because it’s the right thing to do, you should bear in mind that disability can affect anyone of us at any time.

Maybe an issue doesn’t affect you now, but tomorrow it might.

And trust me – it’s an uphill, unjust battle.

The biggest access issue that affects my family is a lack of Changing Places toilets.

I am like a broken record talking about the issue because I find it so hard to believe that we live in a UK that allows this to happen in 2018.

My six year old son Brody is doubly incontinent and wears nappies.

Before he outgrew baby changing facilities I never gave much thought to how older children and adults who wear padded products got changed when out and about.

I’m ashamed to say it simply didn’t cross my mind.

I also didn’t think of how people who couldn’t self-transfer on to a toilet would be able to sit down on one.

I naively assumed so called “accessible toilets” would be accessible for everybody who had a disability that meant that they were unable to use a standard toilet.

How wrong was I?

More Changing Places toilets – a 12 square meter room with equipment such as a height adjustable changing bed, toilet and tracking hoist – are desperately needed throughout the UK.

Sadly, there are only 1080, as I write, which really isn’t a lot – especially when you consider the fact that there are 2500 toilets in Wembley stadium alone!

There are only 157 in Scotland where we live and currently none in our local authority whatsoever.

This means that unless we stay at home and never go out, the choices we are left with are undignified, unhygienic and unsafe – change Brody in our car boot, change him on a public toilet floor or leave him sitting in a dirty nappy.

How can the government justify that these options are acceptable?

How is it that the UK treats some of its most vulnerable citizens this way?

How can we say that it is okay that so many disabled people, their families and carers feel excluded, unwelcome and thought so little of because they are denied a basic human right when venturing out of their house – going to the toilet.

This is a huge issue affecting thousands of disabled people, their carers and their families.

This Disabled Access Day, I’m ashamed that we live in UK that allows this to happen.

Why I Love the Firefly GoTo Shop

My son Brody is 6 years old and unable to walk for a long time around a supermarket.

He is too big for standard trolleys now and I can’t push his wheelchair and a shopping trolley at the same time.

This is most likely something a lot of people don’t think about – because let’s face it, they don’t have to!

But it really is a problem for many families.

Luckily for us, our local Tesco store in Falkirk has a Firefly GoTo Shop shopping trolley.

It’s a game changer for us and many other local families who walk in similar shoes.

It’s great that Tesco took the initiative to have one of these in store and it’s fantastic that in doing so they’re promoting inclusion and access for all – something that all businesses should champion.

A simple thing like this can bring communities together and prevent isolation.

It also creates disability awareness. We’re not all the same, and that’s okay!

The GoTo  Shop trolley seat not only means that I can take Brody shopping with me, it means that he is comfortable.

The seat offers extra postural and head support and a secure five-point harness.

I now have to avoid stores that don’t have a GoTo Shop Trolley because shopping with Brody is just not feasible on my own without one.

No family should be limited to where they can go to shop, but sadly many are.

When we are away from home, we know that we can use the Firefly Finder to find a store that caters for our needs.

I would love to see Firefly achieve their campaign aim of seeing a GoTo Shop trolley in #everysupermarket.

If you feel the same way, speak to your store manager and make them aware of the GoTo Shop Trolley.

You can find a leaflet on the Firefly website here, which you can also print off and hand in.

Small things really do make a big difference.

Stuart Milk said that “we are less if we don’t include everyone” and he was right. Inclusion should always be a priority.

Every little helps!