For parents of children with special/additional needs there is often so much negativity, so much that is hard, so much that makes us want to curl up in a ball and cry.

A few years ago James had his first recorded epileptic event.

Adding a new chapter to his journey that already included chapters called ‘autism’ and ‘learning difficulties’.

His struggles with epilepsy and other significant changes going on then caused him great anxiety, to the point where in the summer of 2017 he just stopped going out of the house altogether; school, clubs, shops, church, his favourite café, everything just stopped… he started a 14-month lockdown, just earlier than everyone else!

For over a year he couldn’t cope with going anywhere.

He couldn’t even manage anything more than a few, tentative, steps out of the back door of our family home to collect things we had left there to try to coax him out, blinking, into the daylight.

For over a year he was isolated from the outside world other than visitors that came to the house, and even then his engagement was limited to a handful of people who he really trusted to get close enough.

Slowly, things started to change.

James unexpectedly agreed to come out for a drive to the local tip, a curious choice for a first trip out after over a year, and hard to create a celebration there, but we did our best.

This innocuous start led to other excursions, to the farm shop, to the café, and by the start of that autumn term we even started to say the word “school” again.

It’s now a couple of years after that initial short trip to get rid of some garden waste, a trip that seemed to declutter something for James too.

As we emerge slowly from another, this time imposed, lockdown, we look forward to reintroducing James to some of his favourite places again; here are a few of them:

The Tip: Yes, it’s still there as a place to visit, James enjoying seeing stuff being thrown over the wall and watching all the huge machines that ‘live’ there.

The Farm Shop: A must for a drive out, James is so well known there that everyone knows him by name, and they order in his favourite iced gingerbread specially.

The Café:  A little grassy airfield near Compton Abbas in north Dorset has a lovely café and we stop there for millionaire’s shortbread and lemonade; a perfect pit stop as James watches the little planes taking off and landing. It opens again in a couple of weeks time.

The Brewery Shop: Yes, you did read that properly, we take our teenager to the Hall & Woodhouse brewery shop, but for him to buy cans of ‘Rio’ his favourite tropical (and definitely non-alcoholic) drink.

And James has been getting back to school too.

Slowly, starting with a short visit once a week and building it up, now he is there for lunch and most of the afternoon, overcoming his anxiety and spending quality time with his school friends and the staff there.

We celebrated his achievements on the last day of term by, you guessed it, going to the tip!

We also went to the farm shop for James to do his shopping and say hello to the lovely staff there.

James was out of the house all afternoon and actually found it hard to come back inside the house when we got home, he wanted to do more.

It’s a million miles from where we were when he was unable to leave the house at all, and we couldn’t be prouder of him…  our awesome, amazing, actually autistic boy!

Maybe you see your child somewhere in James’ story.

Maybe they are stuck inside, anxious about going out anywhere, retreating to the safety of home.

Maybe lockdown has significantly affected their mental health.

Maybe you worry about whether this will ever change, whether there is hope for the future.

James’ story says that there is always hope, always, so take heart, keep persevering, keep on keeping on and looking forward to that day when a simple trip to the tip becomes the best day of your year.

Then make sure the next trip involves a café, and cake!

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].

There’s no denying this year or more has been incredibly difficult.

Covid-19 has reaped absolute havoc with all of our lives and freedoms.

To me, the people who have suffered the most are children.

What’s been asked of them is just beyond anything “normal” or fair.

Being taken from their schools, asked to engage with homeschooling, not being able to play with their friends, being told they are no longer allowed to hug or kiss relatives, missing contact with their much loved grown ups etc.

It’s something that is just so sad.

I often imagine how children with complex needs feel.

Our son has spina bifida, hydrocephalus, epilepsy and learning disabilities meaning he has a whole team of amazing professionals who help him be as strong as he possibly can.

These people became his friends and suddenly they were all gone.

He couldn’t have face to face appointments and had to try and “make do” with zoom calls etc.

Again, it’s just so hard on all our little people and my heart genuinely feels for them.

We’ve just had our second Easter in lockdown.

This year especially we made a bigger effort than we usually do simply because the kids have missed too much already.

With his complex needs, we had to consider how to include Jacob so he didn’t feel left out.

What did this look like then?!

1. A colour co-ordinated egg hunt

Since we have triplets, we need to consider the fact that Ben and Chloe are faster and more agile than Jacob would be.

I’ve learnt in the past that the distribution of eggs can be unfair, which puts a cloud over what should be a fun morning together.

SO…this year I had a word in the Easter bunny’s large ear and asked that he used those little plastic coloured eggs to hide their treats.

Jacob’s eggs were also hidden at eye level so he could easily spot them from his wheelchair.

It was such great fun working together to find yummy treats.

2. Preparation

Jacob doesn’t really like surprises and can become distressed if he is unsure of what’s going on.

So we were giving him little snippets of information about Easter for a few weeks and explaining that he can’t eat TOO much chocolate in one day.

We also explained who he was likely to see on the day and who he wasn’t. A very simple but effective change for us.

3. Protecting against sensory overload

We have all felt like we can’t cope with noises or busy environments at one time or another, but Jacob feels this way a lot.

He will now come and say “too much” to us so we know it’s time for a quiet break.

We reduced the risk of this happening by informally breaking up the day into more manageable “slots” for him while still having lots of fun!

Yes, our Easter doesn’t always look like other people’s…but that doesn’t matter at all.

It worked for our family and we had a fantastic time together!

I really hope that you had a brilliant one too, no matter what adaptations you may have made for your little one(s).

While there are many ‘specialty products’ out there, some companies have taken UDL (universal Design) and accessibility to heart. 

More and more mainstream companies are considering different body types, but now they’re also starting to consider different body abilities with respect to donning and doffing clothes and shoes. 

I have actually gone shopping with some parents to help them sort out the pros and cons of each type of shoe for their child’s AFO, SMO or Sure Step.

Getting shoes on and off does not have to be an ordeal of pushing and shoving the heel down, or to torque the lower leg at just the right angle to slide the back of the shoe on.

I have identified a couple of user-friendly brands for parents and kids to use that are easy to get on and off, fashionable and mainstream (ergo, the cost is not inflated as it is for other specialty items like socks!!).

I’m sure there are more that I still haven’t found out about!

• Plae Adaptive-Friendly Sneakers- easy to get on and off. Straight last fit. Nice pull tab in the back.  Removable foot pads to allow for extra room. No heel rise.

• Ikki shoes for little ones who are toe walkers have a squeaky heel that gives auditory feedback to children who can strike with their heels.  If the sound is driving you nuts, or if your child starts to ambulate with a foot flat or heel-toe gait pattern, you can simply slide a small disc and turn the valve off.

• Smart fit sneakers are wide, have a straight last, and are flexible. They come in regular styles and high tops. 

• Nike Flyease – Nike has been producing sneakers with a variety type of end-users in mind.  They have truly come up with some great styles that can accommodate AFO’s but also accommodate a child who has motor limitations in their hands due to weakness or spasticity.  Great pull straps to make donning and doffing shoes an independent ADL skill! Nike obviously has someone on staff who is thinking about Universal design, which turns out to be cool!

• Billy footwear has been around for a while and has a variety of styles and designs.  They’re priced a little higher than some sneakers but I will vouch for the durability of this product.

• Don’t discard Payless, Walmart and Target!

I hope I gave you some leads that can make your life easier.

You may just be starting this journey or you may have some great ideas for other parents as well about these types of finds.

The shoes described here are just a few examples of shoes that can solve the problem of the extra girth and dexterity that is required for an AFO wearer, with the hope that if designers create a good product, it should be accessible to everyone.  Right?!?

Looking to make this world better for us all.

It’s been a year since the world started shutting down due to COVID-19.

A year of missing out on experiences and feeling isolated- or if you’re the parent of a medically fragile child- more isolated than usual.

With our newfound pandemic lifestyle comes frustration, exhaustion, and other struggles that are unique to each person.

If you’re feeling “over it” when it comes to masks and other safety protocols at this point, even though it may be essential for your family to follow them- you’re not alone.

Pandemic fatigue is a thing, and it’s exhausting.

With cases slowing down in many areas and the uptick of vaccinations, there does seem to be a tiny sliver of light at the end of the tunnel, but it’s still difficult.

Last Spring, we didn’t have a clue of what was to come.

Two weeks turned into months, and before we knew it, the new year was upon us, and not much had changed.

Since we have to be more careful than most because of our ten-year-old’s chronic lung disease, we had rarely left the house since the stay-at-home orders took effect last March.

We got most of our groceries delivered or did curbside pickup to avoid any crowds.

We kept all four of our kids home- they did their socializing virtually for months.

There are many elements of pandemic fatigue that create the perfect storm of exhaustion and impatience, and by the beginning of last summer, the kids were feeling it big time.

It’s hard spending so many waking hours with the same people.

With fewer options for personal space and pursuing individual interests, tension built up quickly.

With no virtual classroom to occupy them during the day, they were bored and lonely.

Working from home became more challenging.

It’s painful being in the position where you have to choose between your child’s mental and physical health.

If we let our two older boys socialize outside the house, it meant they ran the risk of bringing COVID home to their little brother.

If we didn’t, their mental health could suffer more than it already was.

We could already see the effects on our oldest teenager.

We decided to let them hang out with a small group of friends here and there as long as everyone took precautions.

It turned out to be a good decision; their attitude and emotional well-being improved drastically after spending some time with someone other than us for a couple of hours.

The pandemic has taken an emotional toll on everyone, and everyone copes in their own way.

We’re always going to worry about bringing germs home- that’s the nature of living with someone with compromised lungs.

As much as we’d like to keep him in a bubble, that’s not realistic.

The potential danger of COVID is genuine, but so are the effects on mental health while mitigating it.

You just have to find the right balance of what works for your family while keeping everyone as safe as possible.

Autism awareness is something I used to go all in for.

Not only in April–which holds World Autism Awareness Day–but every day of every year.

I have spent most of my life surrounded by people with Autism whom I dearly, dearly love.

Autism is dear to my heart in just about every way.

I have lived with, worked with, been teacher to, and parented people with Autism; and I am a better person because of it.  

So of course, when the day came each year when I could be extra loud about just how much I love these people and how we can better accept and include them, I was loud and proud.

I was all about sharing information, flashing the puzzle piece symbol, and telling the stories of *my* experiences regarding Autism.  

Over time, my mission to not only promote awareness/acceptance of Autism had to change, evolve, be broken down, and then be built back up again in a very different way.

I now know better and I therefore must do better.

I have learned much about how to step back and approach Autism awareness/acceptance in far more respectful, honorable, and truly inclusive ways.

Here are some of the things I have learned:

Just because I have experience living with and around people who have Autism, I am not and never will be the expert on Autism, nor is any other person who is not autistic.

Non-autistic individuals should never be the ones solely standing behind the megaphone, declaring what Autism acceptance should look like.

That megaphone belongs to autistic people and we must protect the space behind it that they deserve.

I am passionate about raising my voice alongside them, but I want to do that in a way that is respectful and effective, which means I must ask autistic people what *they* feel is the best way to implement this.

Autism awareness/acceptance tends to begin at awareness only and fail to ever achieve acceptance, as we seem to focus on learning the “facts” and projecting them on the Autistic Community rather than seeing individual human beings.

Autism awareness is so, so much more than studying information about Autism or paying special attention to an autistic person you may come across.

Simply seeking to learn “about” Autism without the input of autistic people only gives a tiny piece of a very, very large picture.

Why? Because autistic people are just that…people.

And just like every other person, they are all different.

There isn’t one answer, one description, one approach that fits all. Ever.

Their needs, desires, and what things help them feel the most respected differ from person to person, even when a diagnosis is shared.

For instance, I know some individuals who prefer to be called a person with autism…others who prefer to be called autistic…and still others prefer to be called an autistic.

How can we know how to respect these individuals best when our education comes from a random clinical internet article and not the person or people we are seeking to better honor?

Some people appreciate the puzzle piece symbol as a representation of Autism while others find it highly offensive.

I know some people on both sides.

Some find the descriptions of placement on the spectrum insightful, and many others find it demeaning and degrading.

We must choose to be the students of those who live Autism—truly live it—each and every day.

Allow yourself to be challenged, listen well, and better as you learn to know better.

I think ultimately, the greatest thing I am learning is that awareness days, months, and symbols of any kind can never ever stop on the doorstep of whatever cause it is we are advocating for.

The truth is, Autism awareness/acceptance is really HUMAN awareness and acceptance.

The bottom line is that everyone is diverse, distinctive in the thoughts, opinions, and feelings that make them themselves.

So perhaps, it has little to do with Autism and everything to do with treasuring every single human being simply because they are…well…human.

If we can take authentically take this approach, we will naturally find ourselves handing the spotlight back to autistic people.

For when we honor human beings for who they are, we seek to learn from their experiences, better understand their needs and desires, and move mountains in order to show them the respect and honor their deserve.

I wanted to take the opportunity to write a bit about HIE (Hypoxic Ischemic encephalopathy) for HIE awareness day. 

However, in our little family HIE awareness day is every single day. 

Up until New Year’s Day 2019 (the day Joseph was born)- we’d, like many others never even heard of HIE, until during labour our little boy Joseph suffered from a lack of oxygen to the brain, resulting in significant brain damage. 

We had no prior knowledge that he may be in distress and we may never find out the specific cause of his brain injury. 

I remember being shocked that I had to get most of the information for myself from the internet as there was not much literature readily available in the NICU that wasn’t aimed at premature babies. 

I was also surprised given how frequently HIE occurs, that there is only one registered charity for HIE in the UK.

This charity is called Peeps and was set up by a lovely couple in order to support parents where they themselves unfortunately were not. 

At the time of Joseph’s birth, Peeps, was very new and has since grown in terms of the support they are able to offer. 

I know that they are working hard to ensure that parents beginning their HIE journey are more well informed and supported in the NICU.

In the early days it bothered me a lot that there were so many unanswered questions and uncertainty surrounding the condition that Joseph was in following his birth and what it may mean for his future. 

Because of the nature of such an injury and the complexity of the human brain, we were never able to receive clear cut answers from the doctors regarding exactly how this would impact Joe. 

All we had to go off is guesses and statistics and we soon realised that a lot of what we were told was of little meaning anyway as Joe would find his own way in the world regardless of what the professionals said. 

This wonderful little human of ours continuously surprises not just us but many medical specialists too. 

We have accepted that our life is and will most certainly continue to be different to how we had originally planned whilst expecting his arrival. 

Some of those differences bring about very mixed emotions; sadness of course at times, that he will likely never achieve what you would expect a child of his age to achieve.

Although over time this has lessened. 

It’s difficult seeing him struggle to complete simple tasks and try to meet basic milestones.

But the overriding feelings of pride, awe and amazement we feel when we see him displaying more courage, tenacity and problem solving skills than anyone I have ever known is by far worth all of the worry and uncertainty we have experienced and the challenges that I’m sure are yet to come. 

Becoming Joe’s mum has been the most eye opening, terrifying, raw, beautiful, astounding and life altering journey that I have ever been on in my life. 

He has shown me what it really is to love and the true meaning of hope.

He is and will always be my little miracle boy and I will be forever thankful that he is here, filling our days with joy, laughter, wonder and fun. 

The journey we are on has also brought some incredible people into our lives that we otherwise wouldn’t have ever crossed paths with.

For that I can only be grateful as this little community that we have found ourselves in is one that is full to the brim with love, kindness, support and good humour. 

Up until having Joe, I didn’t really know an awful lot about disability and what comes along with it. I guess ignorance is bliss. 

It’s so easy to turn a blind eye to difficult, sensitive and emotive subjects such as disability if it doesn’t impact your life directly.

The old me would have probably seen a disabled person or a family like ours and been unsure how to talk to them and worry about saying the wrong thing. 

I think that this is the case with a lot of people.

I want to knock that barrier down right now and say; If you see us out somewhere doing our thing please come and say hello. I promise you, we will not be offended if you want to ask questions. 

We’re more than happy to educate on the things we have learned and having people take an interest in getting to know about different ways of life is how acceptance and understanding begins.

After all, we live in a most diverse society with a place for everyone. 

We are incredibly proud of everything that Joe has worked so hard to overcome and I love to be able to share that with others. 

Having a disabled child is not a tragedy, we don’t need people’s pity. We need people to see our children as the lovely little individuals that they are.

Sure, our life has extra challenges but we are blessed with this amazing, brave and bright little boy. 

HIE certainly changed our lives in many unexpected ways, but I wouldn’t change it for the world. 

In the hospital bubble, with a very poorly baby, bombarded with medical terminology, tests, tubes, beeping machines and somber faces of the doctors, it is difficult to think of your situation as anything but terrifying. 

It wasn’t until I plucked up the courage to introduce ourselves to other parents on Facebook support pages that I began to relax and accept that actually this is okay.

We’re going to be okay. 

If only I’d known at the beginning that whilst navigating such a turbulent path of worry, fear and uncertainty that we’d find so much joy, gratitude, hope and love along the way. 

James is in his late teens, is autistic, has learning difficulties, epilepsy and anxiety, and so he comes in towards the bottom end of category ‘six’ in the Government’s COVID-19 vaccination first phase priority groups: Adults aged 16 to 65 years in an at-risk group.

Last Monday it was James’ turn to have his first COVID-19 vaccination.

Now James has had jabs before, he gets an annual flu jab for example, but it’s always a process that needs a lot of planning and preparation.

One of the reasons for this is that James is not cognitively able to make decisions about things like medication, vaccinations etc. for himself (a long and detailed CAMHS assessment was gone through just for this); these decisions need to be made for him, in his best interest.

Now in this case, it was in James best interest for him to have his jab, but from his perspective he wouldn’t be too keen on someone sticking a needle in him, so the whole thing had to be carefully arranged so that the jab was administered at home and the needle only appeared at the last minute.

Despite social stories, pictures and lots of talking with James about jabs, we only just about got the jab done in time before James might have flatly refused, a few more seconds and we would have been in trouble.

But getting the vaccination into James’ system was just the beginning.

The following couple of days were hard for James as side effects kicked in causing him to feel unwell, have a painful arm, aching limbs, loose bowel movements and a headache.

James is almost entirely non-verbal, so we had to piece together clues alongside James’ limited communication in order to figure out what side effects he was experiencing and how to help him.

Some pain relief for the aches and pains.

Some deep massage for the painful arm.

Letting him flop across us miserably and giving him gentle reassuring cuddles to ease his overall sense of feeling unwell.

School was completely out of the question, he struggled to get up, move around the house, eat his meals etc. let alone leave the house; something that is a trigger for his anxiety at the very best of times.

The side effects subsided after 48 hours or so, but the impact of it all stayed with James for a few days longer.

It was only when we took him to his favourite farm shop that we saw him perk up and that familiar smile began to return.

Today it is over a week since James’ jab, and it was his first day back at school.

It wasn’t an easy return back, it took ages to get him to transition from the house to the car, and even longer to transition from the car to the school entrance, but he made it and had a great time there.

We hope that tomorrow will be even better. Little steps.

The positives of James having the jab are clear, he will be protected from the virus and will be helping to protect others.

The negatives, while hopefully short lived, have nevertheless been significant for him.

Would we go through it all again?

Yes, the long-term positives are worth it, it is still very much in his best interest, but I wish I had read a blog post like this beforehand so that we could be aware of what might happen and be even better prepared.

Do get the jab for your young people, but don’t plan much for the few days afterwards!

When we were told of Sawyer’s infection at 2 weeks old we were given the decision to do surgery and take all life saving measures or not.

We decided that as long as he shows us he is going to fight then we will fight along side him.

Sawyer has continued to fight with everything he faces.

In turn, we have continued to fight for him.

It’s important to us to fight like hell for everything that he deserves and that could benefit him.

We have found the best doctors for him, the best therapists for him and the best equipment for him.

We have bought and owner trained his service dog to provide anxiety relief during appointments, med retrieval and seizure alert.

It’s not been an easy path but I know that Sawyer is better for everything we have fought for him to have.

It has easily become my full time job researching the best treatment and what is going to give him the best opportunity to thrive.

It is a FULL TIME JOB.

I spend each day planning our schedule and thinking through what needs to be done.

Each day I am training his service dog, reaching out to doctors or scheduling specialist appointments.

Sometimes it’s hard to understand someone’s situation.

It’s hard to walk a mile in their shoes.

As much as I want Sawyer to be just a kid, he requires full time care and having that extra support of evening nursing or a service dog is not only good for him but extremely important to me for my sanity.

I get a small reprieve when my son’s nurse is working.

I have someone who knows him just as well medically to bounce ideas off of.

When there is an emergency I will be able to count on Gryff (Sawyer’s dog) to get meds for me or hopefully get help.

If I want to leave the house and do something for myself when my husband is working, I can knowing he is safe.

Nursing isn’t a crutch, it’s a lifeline.

When I talk to parents about nursing I remind them that it’s not admitting defeat, its giving the critical time to recharge as a MOM.