Chronic stress and special needs parenting

This is my contribution for International Stress Day. It was on the 4th for the USA and the 6th for the UK. I attribute my lateness for this post to, well, stress. Ironically.

Chronic ongoing stress seems to be a common theme in the special needs community.

I would say for me it is mainly due to “the system” and its flaws, or the actual physical dealings with my daughters diagnosis.

She herself is joy and light. I am honoured to be her parent and she is in my heart always. But this does not detract from the very real challenges we face.

For the last two weeks I have been awash in a sea of soiled bedding, used medicine syringes, manky used suction catheters and wrappers.

The other day my heel tried to absorb the cap from a nebuliser ampoule. I now get the standing on Lego hurting your foot reference.

I have spent countless days being promised call backs from various people, I have worked tirelessly trying to keep Amy’s room tidy and clean only to find that several times a day it is refilled with dirty clothing, dirty bedding.

I keep seeing posts on social media about you don’t HAVE TO do every job. But in our little world there are a lot of jobs that must be done.

I don’t want infectious germs spreading throughout the house. I can’t ignore medicine duties, not even for one dose.

If my child needs a shower, or suction, or a nebuliser, or indeed anything at all – it can’t be put off until later.

It has been go go go all day everyday and then at night she begins the coughing and spluttering.

It is hard to stay calm and focused when you aren’t getting any sleep. Every time she’s quiet I’m on seizure watch. I’m thinking hmm is she dehydrated, will she need IVs, what if she’s been off feeds for too long, what if we’re missing something, what if she becomes septic. I find myself checking her resps, heart rate, saturation levels, temp, cap refill – anything I can to convince myself that she is indeed stable and that I’m not mismanaging all of this.

It’s a hell of a lot of pressure on one person.

Two days ago we spent THREE HOURS waiting for a prescription. When we collected it only half of it was there so we had to return today for the rest.

When I got home we received her latest sample results only to find that actually she doesn’t need to continue the antibiotics.

I collapsed back onto the sofa. Half pleased that I didn’t need to continue the arduous process of making up these awkward antibiotics (they’re those glass vials usually used for IVs, really hard to open and hard to mix up!). But also half disillusioned.

How had I just spent a whole week chasing results for tests, making all of those calls, panicking through the night, to find out that her c-diff toxins are now not active and that at this point she actually just has your bog standard (lol) case of gastroenteritis.

I don’t know how I haven’t cried quite honestly.

I am aching to the bone and my tension headaches are on the increase. I think I am in “doing mode”.

Just working constantly through the issues right through until I can fall into bed. Annoyingly, I’ve been getting into bed exhausted to find myself staring at the ceiling for hours.

It’s the stress. Replaying the days events.

Amy has missed school all week. She has this habit of sneaking an extra weeks holiday.

I have felt terrible for her. Almost every interaction with her has been to suction her nose (which she doesn’t like), or to change her nappy (something she recently has taken great exception too), or any other number of interventions.

She has sighed with misery at feeling grotty, and I’ve sighed back, frustrated that in spite of my best efforts I can’t fix things for her.

I’ve had to cancel and rearrange several appointments this week, and last week we missed some really good social events. It has been so disappointing and stressful.

The thing is. A month from now I will have moved on from all of this and be onto new issues.

Earlier on today I was lifting Amy out of her chair (only to discover BM #5 everywhere) and she had twisted her foot in and around her wheelchair base. I hadn’t realised and pulled her harder causing her an injury.

She now has a red sore looking foot. I feel terrible about it.

Yesterday, I lifted her out of her chair to put her onto her bed, and somehow yanked her jejunostomy button out. She screamed in pain and surprise and I frantically replaced it as bile came spurting out at me all over the clean bedding.

I put her into her shower chair and wondered why my foot was suddenly wet. She had weed whilst I was taking the now soiled bedding up off her bed.

And it has been like this almost everyday. A catalogue of incidents and moments of despair. Everyday she seems to find a new and innovative way to cause herself harm. I am in constant fight mode ready to tackle whatever comes next. This comes at a cost.

I take medication daily. I see a counsellor as often as our life permits. I get out into nature as much as possible. I do everything in “the list” of things that you should do.

I have no choice but to be mindful in the sense that I am forever dealing with something, though I worry desperately for the future, and I hurt over things from the past.

I’d say at the moment we are going through a tough time. It scares me because last winter was especially hard for Amy medically and I fear history repeating itself.

I stayed up late searching for articles about the efficacy of prophylactic antibiotics. I stayed up searching for answers to problems that none of us know how to solve.

A few of my friends of having very similar issues to us at the moment. It’s almost as if our lives are all running parallel.

I was venting frustrations at someone not returning a call (several times) only to find my friend was having the exact same problem but with someone else.

It seems that so much of our stress comes from things that are out of our control. I’m quite an independent person and I get very angry when I feel someone isn’t doing what they said they would do, or they are preventing me from getting what I need to help Amy’s quality of life.

I understand we aren’t the only people in the world and that sometimes you have to wait. But there have been many low points the last few days where I’ve just felt like an annoying, nagging, neurotic parent, when actually, I’m not in the wrong at all.

I am already racked with self doubt and the way our system operates does not do much to dispel these feelings.

Sometimes, and this sounds silly.. I forget to breathe. I find myself suddenly taking in a huge breathe and letting out a big sigh.

When this happens in public people often retort “that bad is it?!” or “cheer up! It’ll be Christmas before you know it!” and so on.

It just shows how much tension I keep stored up inside me. I have to remind myself to breathe. I walk a long counting my breaths to try and prevent the big sighs.

I often feel that tension in my back, or in my jaw as I clench and grind my teeth. I tell myself constantly to relax and to stop for a moment, but before I know it without even thinking, I’m back at it.

Everyday I recall that irritating phrase, “suck it up, buttercup”. And I get up, dress up, show up, and do whatever it takes for us to get through the day.

She is 100% worth it and my reason for living, but I do wish things could be a little easier sometimes.

I know things could be a whole lot tougher too, and I have to hold on to that to remind myself that somewhere out there, someone is wishing to have the issues we are having.

As I remember this I take her hand, kiss her head, hold her tightly and soak in how lucky we are in so many ways.

Anyway. I could go on forever about these issues.

In fact, I can feel myself getting angry again as I recount all of this to you. Does any of what I say resonate? How do you deal with it? I’d love to know and welcome any responses.

Wishing you clean bedding, empty washing baskets, dish washing fairies, and good health.

Sisterly Kindness

Kindness is…helping me to walk, holding my hand tight so I won’t fall down.

Kindness is… cuddling me on the couch when I am tired.

Kindness is…learning to tube-feed me because you want to help care for me.

Kindness is…comforting me in my bed when I am upset and just need some company.

Kindness is… reading all my favourite tactile books with me over and over again- and letting me turn the pages.

Kindness is…taking me on the trampoline and letting me have fun lying and sitting while you bounce me up and down.

Kindness is…pushing me to the park in my wheelchair and letting me press the lights at the crosswalk.

Kindness is… listening to my nursery rhymes ALL THE TIME, because you know how happy they make me!

Kindness is…taking time to paint a lovely picture with me, even though I make a mess.

Kindness is… helping me to build tall towers with my blocks, you know how much I love towers “up, up, up”!

Kindness is…swinging with me for as long as I want on my favourite bucket swing at the playground.

Kindness is… patiently fixing my hair into two Dutch braids whilst I squirm between your knees.

Kindness is…helping me to get dressed or change my pull-up when Mummy is busy.

Kindness is…holding and twirling me in the water because I love to swim and splash.

Kindness is…being there for me whenever I need a big sister’s love.

My Social Butterfly

I wanted to write about how Zachariah uses his eyes, sounds, body language and charm to communicate with those around him.

It is an extremely confusing time when you go through diagnosis.

We started this before Zachariah was even born, we were told it was very unlikely he would survive, and even if he did, he would suffer with profound disabilities.

In such negative tone, they wrote my sons life off, they didn’t take a moment to consider that he had been living within me for 30 weeks, and was already life.

I almost feel blessed that my husband and I took none of this, and took no time to think about our options, we just had to continue with pregnancy and do everything we could to ensure he made it through and went on to enjoy life, without disabilities holding him back.

I remember thinking about how his disabilities would look, and wondered how he would develop physically, not sure why, but this became my focus.

I guess in my naïve way of thinking, I saw physical abilities as the most important development.

Fast forward 5 years and I have a completely different way of viewing us a humans, and been blown away by the power of communication, in all of its forms.

It was quite a fast process of diagnosis when Zachariah was born, as there were various findings during the last weeks of pregnancy, however it was a slow reveal of how this would affect his life.

But I used my energy to build a connection with my newborn and loved him along the way.

The first discovery was his vision impairment, and it was something I hadn’t even considered, and it did scare me a little as I wanted Zachariah to see all the beautiful things this world has to offer, however, with the help of Blong Children UK, vision teachers and Zachariah himself, I slowly learned that there is so much more this this life, and unfact Zachariah could see, but he could see something very different to myself and others around him.

We took nothing for granted and became creative. Zachariah began to learn to communicate through touch and sound. He found his own way, and began his own communication journey with close people.

After this, we had speech and language on board, who primarily helped Zachariah with feeding, but also touched on communication.

They introduced us to sounds and the joy of turn taking. This is where Zachariah started to use his voice to communicate key emotions and feelings.

Since then his noises have developed and increased, he now uses different tones, pitches and uses his mouth to create such wonderful sounds to express himself.

He has grown a passion to sing as loudly as he can when in a good mood, and mastered the art of a fake cry when he is being a demanding diva.

It was SALT and Portage team who also started object of reference with us a method to communicate to Zachariah what he was doing next in his routine.

For example when we are going out, we give him his yellow ducky and say “going out Zachariah, going out”. This has been a huge success as we build it up more and more.

And then there was the body language. And this is where I am utterly blown away with my son, as he has made his own way of communication using his head, eyes, hands, arms, legs and feet.

He is able to wave his hands and arms to say hello, but also to express discomfort. Only those who take time to get to know Zachariah will be able to tell these two key messages apart. And to make Zachariah even more special, he is quite selective with who these people are, as he knows who gives him the time, and patience and who doesn’t.

He is a 5 year old boy, who has observed relationships and really taken in who his close people are.

I know this because I have been extremely close to him, as his Mummy, and witnessed him grow closer to certain people and close off from those who haven’t given him the time or energy.

In addition to all this, he has really become a real social butterfly, who uses his charm to draw people in.

He flutters his eyelashes, grins, scrunches up into a cute pose and sings as loudly as he could to catch the attention of many. And if you’re lucky he may blow you a kiss!

He has recently been described as a Head Boy figure at school just for this reason, as he will talk to anybody willing to talk to him.

He does the calling, then needs you to come into his world, and communicate with him in a way he knows best, using touch, sound and good energy.

This boy is more aware than he’s given credit for sometimes.

Who knew there was a World Toilet Day?

I found myself disparagingly wondering if this shows that there really IS a day for everything now. And then I thought about it a bit more.

Of all the challenges Sebastian faces at this stage of his duel diagnosis of Duchenne Muscular Dystrophy and Autism, the fact that he is not yet continent is one of the biggest in practical, day to day terms. And this is not because of his lack of toileting ability but the lack of awareness, support and facilities.

It is an area of disability that even within the SEN world isn’t really talked about.

Perhaps it is to protect our children’s dignity and I fiercely believe in that. Ironically though, the lack of awareness created by the fact that no one talks about it means that I am failing to do just that.

We all know that it’s important to talk to children about disability to create awareness and understanding that not everyone is the same.

So we need them to know that people might look different, move differently, think differently AND that they might go to the toilet differently.

Seeing an older child in nappies should not mean raised eyebrows and staring, it shouldn’t mean whispers.

It is only by talking about it, acknowledging it, that we change the assumption that everyone over the age of 3 is continent.

And it is only by changing that assumption that both understanding and facilities will catch up. There should be no more shame in not being continent than there should in not being able to walk.

A proper changing facility should be as much a part of making somewhere accessible as a wheelchair ramp.

But facilities to change anyone larger than an average 3 year old just don’t exist in enough places.

Where to change Sebastian is something I think about wherever we go. It adds an extra layer of anxiety to daily life.

I have changed him in the boot of the car, on tiny changing tables in the middle of busy public toilets, on toilet floors, in cramped disabled facilities that aren’t fit for purpose.

I have changed him standing up because there isn’t anywhere for him to lie down, meaning that he isn’t properly clean.

I know that as he gets older and bigger, this will only become more of an issue, impacting our lives more and more.

I didn’t even consider this need before we were faced with it.

I am sure many people don’t think about not having an appropriate place for their toileting needs to be met when they go out for the day. And yet it is an issue for far more people than we would like, people of all ages.

So if we are talking about protecting dignity, we actually need to talk about toileting more, not less.

We need it to be identified as the real issue it is.

Parenting a child with disabilities often feels lonely. As ridiculous as it may sound, having an older child who isn’t continent is very isolating .

When you have a baby, it’s totally ok to talk about nappies and wee and poo. As they get older, that changes. Life moves on.

Except that I am still doing it and sometimes it feels like I am the only one. I still carry a changing bag long after most of my friends have given theirs up.

It’s a very physical representation of all the ways that our life is on a different path to the one I expected. But I can rationalise the emotion.

The thing makes me feel as though I am alone is that this aspect of Sebastian’s disability is not acknowledged or catered for.

More importantly, I never want him to feel that he is an a world that doesn’t cater for him.

I don’t want society to disable him more than Duchenne and Autism already do. I never want him to feel shame around his toileting.

I want him to know that he deserves as much privacy and respect as everyone who can go to the toilet by themselves I want him to know that his needs are important and equal.

I want him to feel acknowledged and valued.

So it is not because I don’t care about his dignity that I want to raise this awareness for him. It is because I care so much.

So on World Toilet Day, here’s what I want to say. Toilets are a basic need. They shouldn’t be the privilege of the able bodied

Respite care is a Win-Win-Win

Oh, respite care, how I love thee. Let me count the ways!

It normalizes the “special” out of special needs; when you see more kids who are moving/communicating/behaving/eating/playing like you, you’re not so different from everyone after all.

Everyone needs to feel they belong somewhere.

It gives my daughters and I a chance to do things my son can’t do – and I don’t feel guilty about either a) refusing to go anywhere where he can’t play, or b) bringing him to places he won’t have fun in because he can’t participate in the activities.

He plays with friend peers and genuinely has a good time while we do something we genuinely enjoy.

Everyone is happy! How often can you say that about all your kids?

Respite care also allows me some breathing room away from the constant “on call” nature of special needs parenting. I can choose to read a book, uninterrupted, run errands at my own pace, do everything or nothing at all, and do it with a clean conscience; my son is under the care of professionals and he will be taken care of.

I have nothing to worry about!

It provides an environment in which my son can move around as he sees fit (walking on his knees), without neurotypical kids watching him intently, or making comments about how he gets around.

That seems like a small thing, but it’s not.

Wherever we go, we get questions as to why he moves like he does.

Or worse, he gets comments from children even younger than him that he is “a baby” because he can’t walk.

That is very frustrating to my son. And while I don’t mind answering the questions (advocates need to educate, after all), it is nice to have a break from it.

And for my son to have a break from being watched. All. The. Time.

Lastly, the trained volunteers at our respite care facility love to be there.

We all know that when you find a vocation that suits you, you’re more dedicated to it. And playing alongside the kids genuinely makes them happy!

They get to see kids being kids; having fun however they want, with no expectation of the outcome.

Respite care is a win for everyone!

Peace in the Epilepsy Storm

There have been a few times when I’ve been pulled up by the bootstraps and have felt like I’ve been told that everything is under control and that worrying about things isn’t actually a productive or helpful use of my time or energy.

That hasn’t always been an easy message to receive or learn, but I’ve been regularly provided with clear examples of how that peace can ease our sometimes-troubled hearts and minds.

A while ago our son James reached a hat-trick that we had really hoped he would avoid. Having been diagnosed aged two as Autistic and with Learning Disability, he was given a third diagnosis to add to the list aged 15; Epilepsy.

Now this didn’t come as a complete shock; a few weeks previously James had had a tonic-clonic seizure, the first we are aware of him having, and looking back we remembered a strange report from school a few months before where James seemed to go blank and stare vacantly into space for about 30-seconds before snapping out of it and carrying on as normal.

We now know that this was likely to be an absence seizure, another form of epileptic event. All of this led to the meeting with the Paediatric Neurology Consultant at Poole Hospital, who formally added Epilepsy to James’ diagnosis list.

Now it would be remarkable if this hadn’t worried us, cause us to be even more concerned about James, how this might affect him, what the future might bring.

But in the storm we sensed peace, partly due to having some answers, significantly because of our faith and trust in God.

That evening, as I was ordering anti-suffocation epilepsy pillows, thinking about different types of room monitors, mentally assessing whether there were any hazards in James bedroom, or his den, worry started to creep up on me again; but that peace got there first before my worries overwhelmed me.

I woke in the night… had I heard a noise? Was James OK? I lay listening to the quietness of the house and as I berated myself for being over-anxious, once again God’s peace was there.

His peace comforted and relaxed me. He’s got this, it’s in good hands.

Now not worrying is not the same as not caring. Of course we care greatly for James, we love him dearly and want the very best for him. But does lying awake at night worrying about his epilepsy make it go away?

Does it help us to help him? Does it make any positive difference at all? No… all it does is make us tired, anxious, stressed, and less able to care effectively for him.

In every way, worry is counterproductive.

Not worrying isn’t easy, but we trust in God to help us and we believe he will.

We can receive his peace, his comfort, his rest and that will help us to be much more effective in helping James that any amount of worrying will!

Just like the journey we’ve been on since James was two and received his first diagnoses, God will use our experiences to strengthen us and to equip us to help others this time too.

This may not be a path that you can tread, you may not have a faith that you can turn to, but in whatever way you can try to find the peace that putting worries to one side can bring.

It’s not easy, but worrying isn’t going to achieve anything positive, it can and will only make things seem worse.

Do everything you can to care, do everything you can not to worry, they are very different feelings.

Adoption Awareness Month

From the time I was a tiny girl I have been passionate about living life alongside those who are different than myself, specifically individuals who happen to have diagnoses or “additional needs.”

During my college years, I grew to love the most wonderful man who God gave a passion to match my own.

Newly graduated from college and freshly married, my husband and I dove headfirst into the life we felt called to: parenting children who had severe medical or developmental disabilities.

While we felt that we would adopt sooner or later, we became just as passionate about minimizing the need for adoption as much as possible.

Through specialized foster care, we have the beautiful gift of caring for children with disabilities and partnering with families who need extra support to bring their children home.

It is an immense blessing to be on the frontlines as we see families reunited and able to carry on stronger and more supported.

However, reintegration is not always possible.

In those cases, we step into the role of becoming or helping to find an adoptive family for the children who need it.

When I was young, I certainly viewed adoption through rose color lenses. I saw adoption as a rescue and the greatest gift.

Thankfully, in the years just before and during the process of becoming a foster and adoptive parent, I was lucky enough to be exposed to so many more sides of adoption.

While I wish adoption could be neat and tidy and tied up in a bow, the truth is it is complicated. I am committed to allowing my views to be challenged and remembering my perspective presents only one angle.

Children who are adopted have families, cultures, genetics, and a million other pieces of themselves that must be remembered, honored, and fought for.

As a parent of children who have additional needs–including communication difficulties–I must strive all the more to make way for their story and perspectives to be told in their own words.

I refuse to assume that because my children are unable to ask certain questions and express specific grief and losses that those thoughts and wonderings simply don’t exist.

I cringe when people comment about how “lucky” these children must be to have been adopted by us.

These children lost their first families—that is hardly lucky.

My children love our family and are thankful to be here. But they also love and miss their biological families.

My children have every right to feel thankful some days and overwhelmed by grief other days.

Adoption can be beautiful. Adoption also means great loss.

Some people believe that my children are extra lucky to have been adopted because of their medical needs.

This belief breaks my heart and turns my stomach. My children are human. Simply human.

Their identity is formed by endless aspects and their disability is not at the top of that list.

Just as their disability is a single piece of who my children are, so is their biological background—in fact, I believe it is a much greater piece of their identity than their diagnoses are.

As an adoptive parent, I am not a savior.

Adopting children who have medical needs does not make me special or amazing.

A need arose that my family was able to meet and so we did that.

Does adoption have beautiful benefits and blessings? Absolutely.

Is adoption necessary and best sometimes? Of course.

But the most beautiful things are hardly ever one-sided or simplistic.

Shouldn’t every day be World Kindness Day?

World Kindness Day is observed internationally on November 13.

It exists as a day to highlight and recognize acts of kindness that we bestow onto others.

It’s also a date that encourages us to display random acts of kindness within our communities.

While I think it’s a beautiful idea to have a day dedicated to this most important facet of the human spirit, shouldn’t we try to exhibit kindness EVERY SINGLE DAY?

As a mother to a daughter with multiple disabilities and a son on the Autism Spectrum, I’ve seen my share of ignorance, judgment, and exclusion.

We’ve been left out, stared at, and pushed aside.

The world can be quite cruel.

On the other hand, I find experiences like those to be overshadowed by the GOOD I’ve seen in people.

Despite all the unfortunate incidents we’ve faced, I’ve also witnessed actions that renewed my faith in human decency.

The negatives are eclipsed by the authentic, genuine acts of kindness that we’ve encountered.

A kind deed doesn’t have to be newsworthy to be meaningful. Simple gestures that may seem small often produce the greatest blessings.

Recently, I found myself struggling with a broken umbrella while simultaneously pushing my daughter in her wheelchair and schlepping her therapy equipment to our van.

Normally, I’m quite competent at handling a multitude of items at once; I’ve become skilled at manoeuvring with my hands full.

However, this feat proved to be very tricky for me one rainy afternoon.

After my daughter’s therapy session, I was cursing under my breath at the broken umbrella as we made our way across the hospital parking lot.

My only goal was to keep her dry from the heavy, blowing rain. I was failing.

I was so afraid that she’d get wet and be forced to sit in a miserably soaked wheelchair.

Having to let go of the umbrella to open the door and lower her wheelchair ramp, I was on the brink of a Mom meltdown…the umbrella would not stay open on its own and I needed three hands to complete this arduous task.

My struggle wasn’t invisible that day.

Almost immediately, a hospital employee ran over to us and held her own umbrella over my daughter.

Without a thought, she extended grace to us.

She selflessly offered the words “Let me help” as she stood there, getting drenched by the rain.

She ensured that my daughter was completely shielded as I quickly lowered the ramp.

She stayed by her side, keeping her covered and dry until I pushed her up the ramp, and had her securely placed inside the van.

I was so grateful for the compassionate way she treated us.

She didn’t have to stand there to help two strangers in a downpour that day, but she went out of her way to lend a hand. I must have said “Thank You” fifteen times over the course of those few minutes.

She told me that she was glad to do it and I felt my eyes stinging with tears as she wished us a blessed day.

Her kindness was a generous gift. It was a stark reminder of how we should ALL treat others.

When we go out of our way for someone else and think outside ourselves, wonderful things result.

We could all take a lesson from the thoughtful and courteous lady I encountered at the hospital on that rainy afternoon.

We can make any day feel like World Kindness Day. You never know when someone may truly need it.

Things I thought I would never do

There are many things I thought I would never do.

I remember saying I’d never drive a big car. Now I drive a van.

I always thought I was squeamish. But I didn’t think twice about repassing a NG tube on my child, or a gastrostomy button. I didn’t think I could deal with bowel movements, vomit, bogeys.. all of it.

I never thought I would sing loudly and publicly. The girl has transformed me into a walking pantomime (not a good one, I hasten to add).

After her first surgery I said never again. But it was necessary, and it happened again.

I have conquered it all. Valiantly, and covered in nappy cream/powder formula/sticky medications.

But recently I had to do something I always said I would never do. And with this one I am not proud.

Everything previously I’ve been forced to do I’ve done through necessity but been pleased with myself afterwards for meeting a new special needs milestone, or learning a new skill.

I said “I will NEVER change my child’s nappy in the back of the van”. I also said I’d never change her on the toilet floor (not happened yet still. Thankfully).

It happened yesterday and ever since it happened I’ve thought about it several times an hour and felt quite sad and guilty about it.

We did what we had to do. It was the best option available to us at that moment.

But it doesn’t change how unfair it feels.

Last week was tough. Amy was off school poorly all week.

On Sunday she was feeling much better so I planned a scenic family walk in the Cheshire countryside.

We changed her nappy just before leaving. Sadly we cannot time her bowel movements as she is fed 24 hours a day, so we just hope for the best.

I was hoping it would all just time itself fine and we would deal with it all when we get home.

First we got lost en route to our location. Then we got stuck in the car park for 30 minutes as we weren’t the only ones treating ourselves to a scenic family walk.

I could see the disabled parking bay around the other side of the carpark. We had no way to get to it other than to creep very very slowly. We were at the mercy of the traffic jam.

Inside I could feel a desperation to just get out of the car and get the walk started. I felt like I’d been driving forever.

We finally got into the bay and I unloaded Amy from the back of the van. My heart sank when I realised what the nappy situation was.

I got Phil to confirm and we accepted our fate. We walked to a nearby family pub only to find that not only did it have steps in the entrance, even if we got in, the walkways were so narrow and the room so packed with tables that we didn’t stand a chance to get it.

Defeated, we walked to a quaint tea room. I walked in alone to scout out the changing situation.

Internally I was cursing myself for having not checked out all of these things prior to leaving the house.

What I found wasn’t even what you’d call a changing table. It was some sort of old dresser with a changing mat on it. No legal weight limit specifications, furniture possibly not even attached to the wall, room way too small, and also in plain sight of everyone walking past.

I let out a sigh as I passed a family with a child the same age as Amy and felt that pang of envy that toilet issues like ours don’t even exist in their world.

I approached Phil, Amy and our impatient dog and said “We’re going to have to change her in the van”. The disappointment and dread of Phil’s face mirrored mine.

We tried to make it as private as possible. Frustratingly she needed an entire outfit change. It wasn’t pretty.

I felt self conscious. I wasn’t protecting her dignity well at all.

All of the things I stand for and advocate for and yet I could see perfect strangers peering round to get a good look at what was going on.

I felt myself get red and hot with stress. We fought with her flailing limbs and worked hard to stop her banging her head on the floor of the van.

Her movements are very sporadic and uncoordinated, she can’t protect herself from kicking a hard metal hook or bashing her head on the hard surface of the van floor.

We huffed and puffed and worked well as a team to get her back into a clean outfit. I was pleased I remembered so many wipes, antibac spray and alcohol hand gel.

We got her back in her chair out of breath and certainly not ready for a family walk.

I was gasping for a drink. The queue for the coffee place was huge. Feeling cynical I felt anger at all of those people for I felt of everyone at the whole place, we deserved a drink way more.

Heck, I think we deserved medals or trophies or something, Amy included.

The path was mumch bumpier and hillier than I previously recalled.

We came here 3 years ago, when her chair was smaller and had great suspension. I cringed as she bounced and bumped her way a long the path.

She smiled about it which is good, it can go either way. I know we say not to compare to others. But we were the only people there not smugly carrying a take out drink, wearing wooly hats and scarves and running around playing hide and seek or tag.

I had by this point taken my coat off as was sweating from the intensity of it all. My hair once again betrayed me and began to frizz unflatteringly in the heat. I wished we hadn’t left the house. I wished I hadn’t got out of bed.

It’s amazing how quickly my mood and thoughts can change. I can go from positive and upbeat to downtrodden and depressed so quickly depending on what accessibility and facilities a place provides.

We reached the top of the hill and took in some amazing views. Everyone around us seemed happy, I let their happiness reflect and soak into me and tried my best to shrug off the van ordeal.

I didn’t want to go back to the van, which was soon to be full of bags of soiled clothing and smell of strong antibacterial spray.

The walk was exhilarating. The trees autumnally glorious. The dog had a blast, Amy smiled the whole time.

I don’t think I’ll remember this as the place where we had a lovely walk. I will remember it as that first awful time we admitted defeat and changed Amy in the van. I don’t think it will be the last time. I plan now to buy a wipe clean fold up mat, and something to stand around the back of the van to give some privacy.

I’m wondering, have any of you faced this situation? Do you still do it now?

Part of me feels bad for complaining, I know plenty of people whose children with disabilities are now adults and most likely never had anything close to what we have now in terms of accessibility. I don’t know how they got through it all, they have my admiration, empathy and respect.

However, I also feel that societys expectations have changed and the realisation is that the disabled community is growing… with advances in medicine we are saving more babies that will go on to have complex health needs, equally we are living longer which in some cases will mean more people with mobility challenges.

Surely from now on the world will be forced for than ever to see the world through our eyes and make the necessary adaptations to accommodate and include all?

I had checked to see where our nearest changing places was but there was nothing nearby.

We were too far from home to go there and return back. It was a horrible situation to be in.

One I fear being in again. It was dangerous, undignified, unhygienic, unfair and so many other things.

When I got home I wrote to the National Trust to explain the ordeal we had faced. I was pleased to find that some of their attractions do feature Changing Places, and that they do intend to install more. They also said they would pass my post on to the relevant teams.

When I uploaded the picture in this blog to Facebook for friends and family to see I had entitled it “our day so far”. What I hadn’t considered was that some may not realise we were positioned this way to change Amy’s outfit… they panicked and thought a medical emergency had occurred.

We were hit with a barrage of comments from concerned friends “is she ok?” “omg what happened?” etc.

To me this highlights how unnatural this image is, how it shouldn’t be this way.

I assuaged their anxieties and assured them it was just a nappy change, and the general consensus was how unfair it was. I also received many helpful tips from other parents who have had to face this situation.

I worry about when she gets bigger and we can no longer lift her. The van changes are not something that can continue to happen. Our backs can’t handle it and she’s getting so strong. I don’t know what we will do.

I don’t want to isolate ourselves and stay home all the time.

I said I’d never change my daughter in the van.

I wish I never had to. I wish I never had to again.

Please world, keep changing for the good. We just want to be out and about like everyone else, even if I don’t have a hand free to be smug with a take out coffee.