Frustration is.

Frustration is being exhausted all day, but unable to sleep at night.

Frustration is chasing that medication for the 3rd, no, 4th time this month.

Frustration is spending 3 hours packing, only to forget something vital.

Frustration is, being desperate for a break, but when you get it, feeling guilty and unable to relax.

Frustration is, trying to retain credibility whilst holding back tears so you don’t look like you can’t cope.

Frustration is, finally being ready to go out but the beeping won’t stop.

Frustration is, finally getting the perfect spot, and then someone blocks your ramp in.

Frustration is, trying to divert your child’s gaze away from the park that has nothing for them.

Frustration is, having all of the thoughts, but not being able to put them into words.

Frustration is, only needing one kind voice, and then the secretary is rude and unhelpful.

Frustration is, knowing you know your child best, but spending every moment of the day second guessing yourself.

Frustration is, respecting the opinions of the professionals, but not feeling it is always reciprocated.

Frustration is waiting for planning permission, funding, someone else to say yes or no.

Frustration is fighting hard for the support you get, but living in fear it could be ripped away in a heartbeat.

Frustration is, finding the right meds, but then them having debilitating side effects.

Frustration is,a look of pity or judgment.

Frustration is needing some silence when the world feels like it is screaming at you.

Frustration is, millions of toilets for able bodied people, but barely anything for those who are not.

Frustration is working harder than most, yet often viewed as just a “stay at home parent.”

Frustration is adjusting to higher running costs for the house, but being unable to earn more than 30p an hour.

Frustration is spending your life on street view working out if somewhere is actually accessible because sometimes “there’s just one step” isn’t good enough.

Frustration is not being able to calm your child’s meltdown and feeling like the worst parent ever.

Frustration is your child being in pain and knowing it could be any one of 100 things and having to work through a list of guesses.

Frustration is uncertainty. Never being able to be complacent. A hospital admission could happen at any moment.

Frustration is seeing so many bad things happening to good, innocent people. Especially within our SEN community.

Frustration is knowing that money would transform our lives with equipment and adaptations but all of this being out of our control.

Frustration is not being understood by everyone not in our situation.

Frustration is having to say no to invites, but fearing one day the invites might stop.

Frustration is, knowing this list could probably go on and on, endlessly.

I accept that frustration is an inevitable part of life. I sometimes wonder how and why I was ever frustrated before being in the life I lead now.

I so often wish I had the problems I had 10 years ago compared to now.

Whilst inevitable and exhausting, frustration is a necessary evil. It spurs us on to concur another day. It lights the fire inside that keeps us fighting, advocating, and caring.

It makes me a better person. 

Recently I feel I have been at my most calm, and yet when someone blocked our van in at a park last week, I honestly felt like screaming.

I left a note on their windscreen. I worded it calmly but sternly. I carried that anger for days.

Why would they do this? Why did they park illegally? Can they not see the 10+ stickers all over the back of our van? 

These micro annoyances can accumulate and gain traction and cause us to be embittered and infuriated… but carers do not always have the emotional and physical resources to sustain this level of frustration.

I feel like over the years I have become much more resilient and much more careful in how I pick my battles.

Some battles can’t be won.

I still think there should be much heavier fines and monitoring of those abusing disabled bays and double yellow lines etc, however I am only one person.

I know my feelings are shared by so many others in the community and whilst we do what we can, sometimes the world is just ignorant and unfair.

I’d like to believe in karma and hope that one day these people will be taught a lesson whereby they regret their selfish actions.

But until then, coffee, naps where possible, and cuddles with my sweet girl who makes all of this worth it and then some

The girl in his taxi

School transport has been a major source of stress for me over the years.

In the 11 years, my non-speaking autistic son has had to get transport to nursery or school the provider has changed every single year.

So every single year he’s had to get used to a new car, new driver, new escort, new route and different children with him as well as different pick-up times and drops offs. 

For a child who seriously struggles with change, this causes so much distress every single year. 

This year when we finally met the new driver and vehicle my heart sank once again.

The vehicle this year was a large car where some of the seats were rear facing!

My son would be picked up last and would be allocated whatever seat was available even if this didn’t face forwards. 

I gently explained that he has a huge mass in his brain and travelling rear-facing would make him sick.

I discussed his impaired vision and why he needs to sit at one side as his other eye has no vision at all.

I told them he is epileptic and can’t communicate verbally that he was struggling and he wouldn’t be seen in the mirror if facing backward.

While the driver nodded to all this I really wasn’t sure how things would go. 

But what I had no idea about was there would be a girl in his taxi who would change everything! 

As the taxi pulled up outside my house for his first day back and the doors were slid open the first thing my son heard was an excited older girl’s voice:

“Oh it’s Isaac! Driver you have to be careful with Isaac. Let me help him!” 

And before anyone could do anything else she got out of her seat and supported my son into the vehicle, strapped him in, welcomed him and even gave up her own seat and sat facing backward herself! 

It’s a lovely story of kindness and humanity but what is even more significant is that the girl in the taxi has learning difficulties and complex needs herself! 

There are so many assumptions made about people with learning difficulties. They are too often overlooked and undervalued by society. 

Next time you perhaps meet someone who is struggling with something, requires extra support or you know has learning difficulties just remember the girl in my son’s taxi.

The care, compassion and kindness she radiated should never ever be forgotten. 

Today my autistic non-speaking son with very high needs laughed in excitement while he waited for his school transport.

My worries as his mum will always be there but knowing he has someone in his taxi looking out for him makes my heart sing. 

To the girl in his taxi: thank you for teaching so many of us to see beyond someone’s struggles and instead see their capabilities and ability to touch other lives.

Pet loss and special needs

A few weeks ago we had to make the decision to have our much-loved tabby cat put to sleep.

We’ve had Pixie since Sam was around 3 years old; a tiny rescue, she very much chose us.

After discussing our family situation with the rescue centre, the lady said she thought she had a couple of cats that would fit the bill – as soon as we walked in with the Dude in his SN pushchair, this tiny scrappy tabby, ran straight up to us and on to our boys lap, purring like a motorbike.

The rest is history.

Pixie had enormous character – a diminutive diva, her growth stunted as a result of having had a litter before she was ready, her pneumatic purr the result of a tumour in her throat.

She and the Dude shared a very close bond.

Years before we considered an assistance dog, Pixie took it upon herself to sleep at our boys feet and wake us up by jumping on us when he had a seizure at night.

She wanted to be the first to welcome him home from school, the first to sit on his lap and the first to make herself known to every new person who came through the door.

She even ‘mothered’ Merlin the golden retriever when he arrived as a puppy a few years later!

While her incredibly noisy purr was her trademark and allowed us to know she was coming from 100 yds (saving more birds and small rodents in the process than I can possibly imagine), it was ultimately the cause of her demise.

Although the tumour that caused her to be so noisy was removed during surgery before we adopted her, over the years it slowly returned and became cancerous.

While I was able to be with her at the end, the Dude wasn’t.

This is not my boys first encounter with death and loss; he’s had to say goodbye to too many friends in his short life, as well as his beloved Grandpa.

But with Pixie, this was an animal he saw every single day and we didn’t know how he would respond to this loss of his much loved furry friend.

It may not be everyone’s choice, but we opted to bring her home and bury her in our garden. It meant our boy could see her one last time and say goodbye.

I am forever glad that we could do this.

It was clear that our little guy understood – he never fails to impress us with his intelligence and understanding, as he gently nodded and squeezed my hand as I explained to him that she wasn’t suffering now, comforting me at the same time.

She was absolutely his cat, allowing him the opportunity to process her death in this way helped him understand.

Turns out it was cathartic for us all.

Teaching the teachers

If you have a child with any kind of SEN you’ll fully understand the delights of transitions – it doesn’t matter whether it’s between classes or schools, a new carer or setting.

Any change in carers means it’s time to teach the adults all those different things that they will need to know to keep your child safe and happy.

Care plans, seizure protocols, and medications are the easy bits because these are, in general at least, pretty standard.

However. When you have a child like the Dude who seemingly has a perverse determination in seeing how many new and unusual seizure types he can throw into the mix within the first few weeks (if not days) of being in a new setting, then things can get a bit interesting.

Ladies and gentlemen, this boy is a Pickle. A gorgeous, funny wonderful one granted; but a pickle nonetheless.

One of my personal favourite memories comes from nursery – when a lovely staff member was trying to describe the movements he was doing over the phone to me and was actually demonstrating his arm movements at the time.

On. The. Phone. It had been a very long time since they’d had a SN child in their care and they were anxious to make sure they got everything right.. after a giggle, we ascertained that he was fine and was just trying to roll over!

It is an inevitable fact of life that when new adults come into the Dudes life there will be a dramatic increase in the volume of emails/phone calls while everyone gets used to this unique boy of ours.

It is something I am immensely thankful for.

After all, if people don’t ask they won’t learn. And if they don’t learn what is/isn’t normal for him then they can’t keep him safe.

His neurologist once explained that while his seizure type may not change (generalised v’s focal for example), as he grew and developed new neuronal connections their appearance WOULD.

It still throws us at times when a seizure is but doesn’t ‘look’ like we’re used to.

And it’s unsettling, if not actually terrifying anymore.

After 11 years, the seizures have (almost) lost their power to utterly terrify me every time but I know how scary it is seeing a child having a seizure, especially when you’re not used to it.

I will forever be thankful to those teachers, TA’s and carers who look after my child when I’m not there with him, and am thankful that they know they can and do ask about things they’re not sure of.

Because that’s how he stays safe, and how he’s able to enjoy the life he deserves.

A cold winter ahead

It’s no secret that as a country, we’re hurtling towards a difficult winter.

Speaking as an immunologist, there are the usual concerns about seasonal flu added to the uncertainties that covid poses.

Although we are officially coming to the end of the pandemic, the virus is still around and the health service is struggling after two years of incredible strain.

Viruses, flu and other infections we are used to dealing with however – as the mum of a disabled young man it’s the energy crisis that is causing me the greatest number of sleepless nights.  

While illness will always be a worry, I do feel somewhat reassured that my boy has had covid twice without too many major issues and that we’re as prepared as possible for flu season.

But how on Earth can we prepare for the predicted, astronomical rise in energy costs?

The Dude relies on a lot of electrical equipment – turning it off to save money is not an option.

Vulnerable individuals like him need to keep warm or their resistance to illness decreases, breathing in damp cold air is not good for those of us with respiratory issues.

I will admit that the new Prime Minister’s announcement on energy costs makes me feel a little better, but not a huge amount, and the additional payment disabled individuals qualify for will be gone almost as soon as it arrives. 

Currently, we plan on keeping the heating off as long as possible, lowering the thermostat when it does eventually have to go on, and keeping doors closed so we only heat the rooms we need to.

Martin Lewis (the moneysavingexpert) says ‘heat the person, not the home’.

So we will be investing in hooded blankets and electric versions for bedrooms (much cheaper to run than central heating).

Hopefully, that’ll keep things ticking over.

The boy himself doesn’t seem overly concerned mind you; the Onsie being his favourite item of clothing, preferably fleecy, hooded being an added bonus.

Currently, he is glaring at me as I type in case I get ideas about taking his photo as he sits resplendent in a lime green Minecraft version.

Ladies and gentlemen, I have been Told. 

The sweetest sound?!

Right now, I am lying on the sofa bed in the Dudes room, listening to the sweetest sound imaginable at this moment in time – my beautiful boy snoring softly.

Granted, this may not be other people’s idea of music to their ears, but to mine, it is priceless because I know he is breathing. 

Just two weeks ago, he made the move to high school; safe to say it’s been a huge success so far.

He loves the shorter drive (15 minutes compared to 1 hr to his old primary), is enjoying his classes, likes his new teachers and TA, and is coming home happy and tired at the end of the day like any other 11-year-old.

And, like every other child suddenly returned to the germ soup that is a class full of new friends, the Dude has come down with the dreaded lurgy. 

Except, for a boy with respiratory issues, life-threatening seizures, and a few other complications thrown in, there is no such thing as ‘just’ a cold.  

After a tricky evening managing secretions with chest physio, seizures going off the scale and regular calpol (seriously, how DID parents cope without it?!) my young man has finally drifted off to sleep… the aforementioned soft snoring confirms this.

While the occasional seizure may startle him awake, it’s a much gentler noise than the screech of his SATs monitor alarming.

Snoring is a symptom of his low muscle tone; with a history of sleep apnea it’s something we keep a close eye on.

His vagus nerve stimulator – the small but powerful implant that stops around 70 seizures daily from establishing – has the unfortunate effect of relaxing his muscles even more so snoring/apnea can be worsened.

The Dude’s amazing team monitor his carefully to ensure his breathing isn’t affected while giving him the best seizure control possible.

It’s a fine balance involving his respiratory and neuro teams, regular sleep studies and a lot of communication, but it works to keep our boy home where he belongs and out of hospital as much as possible. 

With a bit of luck, good management and offering up a quick prayer, this bug will pass quickly and he can get back to school.

At least we almost managed two full weeks?! 

What “Back to School” looks like for us

For parents, the first day of school is typically fueled by varied emotions.

Excitement, anxiety, and hopefulness are often accompanied by a bit of retrospection.

Summer has ended and our children are a whole year older.

For some, there is a great sense of relief, as the return to routine commences.

As a mom, I’m enthusiastic each year for a fresh new beginning. As a mom to a child with multiple disabilities and special needs, I’m also TERRIFIED.

The anticipation of dropping her off and being away from her fills my thoughts with worry.

Will all her needs be understood and met? What if she has a medical emergency and I’m not there? Will everyone show her kindness and compassion? What hurdles and fights will we encounter this school year?

On the first day of sixth grade, as we head out the door, her brand new, pretty, pink bookbag is overflowing.

“Ordinary” school supplies aren’t causing it to burst at the seams.

There are no pencils tucked inside.

There is no ruler or pair of scissors.

She won’t require notebook paper or a calculator.

Her heavy bookbag hangs off the back of her wheelchair, holding more vital, necessary items.

It contains pieces of her life that must travel with her, everywhere she goes.

Over and over, I nervously review my mental checklist of things she will need:

Diapers, wipes, diaper cream, extra clothes…

Seizure medication, syringes, seizure rescue medicine, portable blow-by oxygen tank…

Seizure emergency plan, medical diagnosis forms, medication administration forms…

In place of the cute, one-page “All about Me” info sheet that young children take to their teachers on the first day, my daughter has an extensively organized BINDER.

It is a bulky, three-ringed notebook, complete with a breakdown of her diagnoses and how they affect her day-to-day life and learning.

It is jam-packed with information on her strict diet, sensory needs, seizure triggers and interventions.

Along with the overstuffed bookbag and the ample binder, our van is also teeming with a plethora of other essential daily items…

Ankle-Foot Orthotics, Knee-Ankle-Foot Orthotics, Speech Generating Device, a lunchbox adorned with unicorns and filled with pureed, dairy-free, and gluten-free foods.

As we get ready to leave home, I can see the happiness in her eyes when I ask her if she wants to go to her “Big School.” She claps her little hands emphatically and a sweet grin stretches across her face.

I squash down my fears for the moment and relish in the pure joy that she radiates.

When we arrive, I summon the courage and work hard to hold back the tears.

I am sending my non-verbal child with complex medical needs out into the world again, and it is scary.

As I push her chair up the walkway and watch her delight, I remind myself that her very competent team is in place and her education and medical plans are solid.

She needs this…I need this.

We greet her wonderful teachers; they offer me much empathy and ensure me that my child will be well-loved, and in good hands.

A few minutes later, I have a quick cry in my van, and realize I didn’t even capture the occasion with a photo!

I then dash directly to Starbucks for a stress-reducing reward of espresso and chocolate. It will all be ok.

The hours of day one will tick by, ever so slowly, but we’ve ultimately tackled this initial feat of going back to school.

Thankfully, it doesn’t take long for our new routine to set in.

After only a couple of days, I am reminded of how beneficial school is for my girl.

Parents of children with disabilities and special needs, we’ve got this.

Every year, our “Back to School” may look a little different; it may be a bit more challenging, but we get through it and push forward.

We have great big goals to achieve!

Superhero Siblings

When my son became a big brother at age six, he also became so much more.

He instantly transformed into a protector, a doting role model, an empathetic helper, and the best buddy to his baby sister.

He has stood proud in these roles from the very beginning.

When our tiny, four-pound miracle girl came into the world, little did we know that her brother would also become a hero.

We had no clue as to the lessons he’d be forced to learn, at a very young age. As a sibling to his sister with complex medical needs and disabilities, he has carried a lot on his shoulders over the past 12 years.

He has timed innumerable seizures and called 9-1-1.

During a recent, very scary grand mal seizure, I heard him calmly relate to a dispatcher that we had been waiting on an ambulance for twenty minutes and his sister needed help, immediately.

He knows to open the door and step outside to flag down an ambulance as it drives up. A child shouldn’t have to know such a burden as that.

He has felt a sense of crushing worry that a sibling should never have to feel.

He has become a pro at securing his sister’s wheelchair into our van. He unhooks the latches and jumps out to let her ramp down whenever we park, without being asked.

When she shakes her head “no” and refuses to take her medicine for me, he willingly steps in and easily administers it, without any questions. It’s all second nature to him.

When she’s sick and running a fever, he will pop into the room repeatedly to check on her.

Every day when she gets home from school, he instinctively asks how her day was and he promptly puts on her favorite TV show.

My son has tagged along to countless therapies and specialist appointments. Offering to lend a hand to carry things and hold doors open for me, he NEVER complains about it.

He’s missed out on planned outings due to her being ill and he’s made sacrifices that most siblings couldn’t imagine.

When he was 11, he once told me that he would take care of his sister when I became too old.

That was a defining moment I’ll never forget; my heart felt as if it exploded with his profound statement.

I also worry about him too, and I wish for his life to be fulfilling and happy.

He’s eighteen now and has his own agenda, but I know that he will always make sure that his sister is well cared for.

Even though he’s older, and they don’t read books together or play together quite as much these days, the bond between them is still obvious.

He makes me prouder than he’ll ever comprehend.

Siblings like him, who walk in these similar shoes, are so very strong and resilient.

In my eyes, he’s a Superhero. I’m pretty sure his sister sees him that way to

Public transport with a wheelchair & wheelchair accessible vans

Prior to having Amy, my knowledge of wheelchair-accessible vehicles was very limited (and to a degree still is).

Until you are in our situation you perhaps don’t really have cause to think about it.

I had a teacher in high school who was a wheelchair user.

I remember seeing himself transfer into the driver’s seat of his adapted car and fold his wheelchair into the back. (He was an incredible teacher by the way, in spite of all of the detentions gave me; and even taught my mum! RIP Mr Bean. Yes that was his real name). 

This was literally my only experience of disability and travel other than seeing the resource/children with additional needs on their school buses in primary school. 

We are fortunate enough to have a WAV (a wheelchair accessible vehicle). 

Here in the UK if you received the high rate mobility component of DLA or PIP you are able to apply to use that money towards a suitable vehicle.

It’s more complex than this, of course, there can be huge deposits for which you can apply for grants… and not everyone is eligible for grants.

When you first start to look into getting a WAV it’s a daunting experience. There is so much information to take in, and so much research to do.

I always said I would never drive a big car. I am an anxious driver and feel safer in a little car.

So it has been a huge obstacle to overcome agreeing we need the van.

We now realise that Amy and her equipment are growing, and her health needs have increased too meaning more supplies coming out with us.

This means our next van needs to be bigger.

I am already filled with dread at the prospect however I do feel positive that it will enable us to go on more UK holidays in just one vehicle instead of two.

Recently a friend was going to meet us in town for a special event.

She had opted to take the bus with her wheelchair-user daughter.

She waited a long time for the bus and when it eventually arrived the driver said there was no room and drove off.

He didn’t check to see if there was any other option, and he offered no empathy.

My friend was understandably upset and I was infuriated for her. The reason they couldn’t board the bus was because there was a pram on and a wheelchair already.

I have since looked into this because I thought the rule was all prams have to be folded down for wheelchair users and that wheelchairs take priority.

I have since found out that most buses only allow one wheelchair user.

I understand that this is for health and safety reasons but what if two people were friends and wheelchair users?

They have to not get the bus together? 

In my research I found the following:

“If a wheelchair space is occupied by standing passengers and luggage, you might not be able to allow a wheelchair user on the bus.”

Now I completely get it… we can’t expect people to magic up space for the wheelchair user. But LUGGAGE!!

We’ve not been able to go on a train before because of luggage in the wheelchair bay and it enrages me.

You would hope that with all of the technology at our disposal these days that buses could be designed to have seats that can fold away properly and safely to accommodate extra wheelchair users.

I don’t want to come across as self-righteous or entitled, but it honestly enrages me that people are being left out in the rain waiting for another bus hoping that this next one isn’t full to capacity… all whilst the person may be trying to manage a chronic condition.

It makes me feel that our society isn’t quite as developed as we think and that more attention needs to be paid to ensure that everyone has the same opportunity to take the bus somewhere.

I also read “Only buses that can carry 22 passengers or more have to be accessible.”

It frustrates me that companies will always do the bare minimum to meet the legal standard. (This info was taken from citizens advice)

Why can’t we do more? We have an aging population… more poorly children are surviving.. There are more wheelchair users than ever before and this is likely only to increase.

I haven’t had the courage to get the bus with Amy since our last time, which was many years ago.

The actual boarding on and off is fine, I am pleased with how buses can be lowered to help people get on, but I still feel more needs to be done to ensure no one is turned away because they have a wheelchair.

I know things have come a long way compared to the past, and I am glad progress is being made, but something about it still doesn’t sit right with me.

Have you any experiences, positive or negative, of getting the bus?

I’d be keen to know the experiences of others.

For now I remain reliant on our van, but worry that if at some point we are left needing public transport, that things could be less than ideal.