‘Parent carer’ is a term widely used in professional circles to describe a parent of a child with a disability. Many parent carers do identify as such, but not everyone.

Some people have not heard of the term, or believe that as a parent you care anyway, so see it all as part of ‘the job’. It is vital that we continue to recognise parent carers as having a vastly different, and normally far more difficult role, than parents of non-disabled children.

Being a parent carer is, certainly in my experience, an entire job in itself. Add that to the ‘typical’ role of ‘standard’ parenting and you’ve got an incredibly full plate. The physical load (the extra cooking, cleaning, appointments) and the mental load (the coordination of services), combine to create an enormous weight for anyone to carry.

Unlike most typical jobs, this role is charged with emotion and can give you soaring highs and crushing lows, often in the space of one day, or an hour. So it is vital then, that people around us, family, friends, public services and businesses, recognise this.

At present there is still much work to be done here.

Two examples spring to mind. Our local authority used to class parent carers as ‘carers’ and the local carers service was open to us. This offered subsidised counselling, a token wellbeing payment (which although small was significant for so many) and a raft of other support.

They also completed carers’ assessments. In the last few years this has been changed to exclude parent carers from the local carers offering. This has left me perplexed and cross, to put it mildly. The anger comes from the fact that it makes me feel unseen. Some people (I am guessing none of them parents of disabled children) have decided that parent carers do not qualify for this support.

A parent carer role is often for a lifetime, is 24/7 and involves more fighting and advocacy work than I could have imagined. This sort of exclusion leaves me thinking that they do not understand this, and see our role as just part of being a parent. Note to self – write to MP on this.

We visited a family attraction recently and wanted to bring my daughter’s carer with us.

. My little girl requires 2:1 care so needs me plus another person on a day out. The attraction’s policy on carers admission fees was as follows: Students and carers: £2 discount. I could not believe what I was reading. Carers and students were lumped together as if they have the same requirements. I do not want a token discount for my daughter’s carer. I should not have to pay; she needs her there as much as she needs her disability buggy or epilepsy helmet. Another note to self – write to attraction.

These two examples show there is much to be done in educating the wider community on how the role of a parent carer is so different from that of a typical parent. As parent carers, we can all play our part in helping to get the word out there, but we shouldn’t have to of course. It’s another ‘to do’ on our infinite ‘lists’.

No one understands this like other parent carers, which is why communities such as this one, forums, charities and groups are so vital. I love it when I see another parent carer out in ‘the wild’ and we share a look or smile, knowing that someone else gets it. When you know, you know.       

If you live in the UK and have a child diagnosed with cerebral palsy (CP), then chances are you will have heard of CPIP (Cerebral Palsy Integrated Pathway). Nowadays, most children with cerebral palsy are monitored through CPIP – but what exactly is it, and why are children being monitored in this way?

The concept of CPIP is all about monitoring the hip joints of children with cerebral palsy. Children with a cerebral palsy diagnosis have a risk of their hip joints (the ball and sockets) gradually moving out of place, known as hip displacement or ‘hip subluxation’. It is the second most common muscle and bone issue affecting children with CP, and importantly is directly related to a child’s ability to move.

Twenty years ago, Sweden decided to address this concern with CPUP, a follow-up programme for children with cerebral palsy or suspected cerebral palsy.

Their goal was to implement standardised monitoring for the early detection of muscle and joint changes that could indicate a potential risk of hip displacement. When values dip below specific thresholds, it prompts a variety of interventions and treatments, spanning from hydrotherapy and assistive equipment to botulinum injections and surgery.

This programme marked a turning point for CP care in Sweden, has fundamentally changed care in Sweden and demonstrated that early detection leads to early intervention which, in turn, leads to reduced chances of hip problems.

Their data showed that hip surveillance programmes like this dramatically reduce the number of children suffering a hip dislocation to less than 1% and reduces the number requiring orthopaedic surgery to less than 15%.

The UK’s adaptation of this program, known as CPIP (Cerebral Palsy Integrated Pathway), follows a similar approach.

It involves standardised clinical examinations and regular hip X-rays for at-risk children based on age and severity. The initiative aims to identify issues early and provide appropriate treatments, effectively minimising the risks associated with hip displacement. You can learn more about the main strands of CPIP here >>

But the UK is not the only country who has adopted a surveillance programme like this. The CPIP model has been adopted by many countries across the world, including the USA and Australia. You can read more about the programmes that run in your region below:

• UK – https://www.cpipuk.org/ 
• US – https://www.aacpdm.org/publications/care-pathways/hip-surveillance-in-cerebral-palsy 
• AU – https://www.ausacpdm.org.au/resources/australian-hip-surveillance-guidelines/ 

“You make sure that your daughter drinks plenty of water.” “You need to do the same for yourself, too.”

Wise words from my doctor at my latest annual wellness exam. She knows that I am the mother of a child with multiple disabilities and special healthcare needs. With my daughter having a solitary kidney, her hydration is at the top of my daily priority list. As for myself, my daily water intake typically consists of the ounces used to brew my many cups of coffee.

“Let’s talk about ways we can manage your stress and help you sleep better.”

“You need to make some time for yourself.” “Walks in the sunshine could be helpful.”

“It’s time to schedule a routine colonoscopy and mammogram.”

I already knew all these things. Sitting there with my kind and thorough physician, I was reminded of their importance with care and concern. We talked about all the EXTRA things that come along with my version of motherhood.

In addition to the joy and indescribable love that fill my days, my story also involves repetitive lifting, life-long caregiving, and endless advocating. It is my purpose and I put my entire heart and soul into it.

I’m in it for the long haul. I HAVE TO BE.

At that visit, I felt rejuvenated and remembered how vital it is that I make my own health and well-being a priority. To take the very best care of my family, I can’t afford to put off any of the things that we discussed.

I can’t allow myself to get completely run down, have worsening back injuries or feel completely burned out. How can I be there to meet my family’s needs if I don’t meet the needs of my own mind and body?

So, this morning, I scheduled all my follow up appointments and preventative exams.

I dread them all and I’m not looking forward to any of it.

But, if my daughter must withstand never-ending ultrasounds, swallow tests, x-rays, blood draws and more, then I can’t let her down. I won’t let her, our family, or myself down. I will make the time for each of these imperative tasks, and I’ll stop procrastinating.

Today, as I fill my daughter’s cup and check off her ounces of water intake, I also fill my own. I’ll have an apple and I’ll take a walk around the block, feeling the sunshine on my face and the breeze in my hair. I’ll listen to my well-meaning, fitness enthusiast husband when he shares back-saving lifting tips or encourages me to step away for a break.

This life isn’t easy, but it’s mine and I am so very grateful for every second of it. Making time for ourselves isn’t at all selfish or an inconvenience. Mamas and caregivers pour our love into our precious ones as we provide for their care. Sometimes, we just need gentle nudges to do the same for us, too.

It’s no secret that waiting on a surgery date can be stressful. Dates are booked weeks to months in advance only to be cancelled at the last minute due to lack of beds, illness etc. Often repeatedly. It’s frustrating, distressing and enormously difficult at the best of times – add in the extras that come with a complex need child and things can really get complicated.

Four weeks ago we got the call that the Dudes spinal surgery was booked in. An already high-risk procedure, this surgery was even more difficult to arrange due to his VNS. Specialist equipment had to be brought in, two surgeons were required and a VNS specialist had to be present to turn his implant off immediately prior to the surgery and then switch it back on again immediately after.

Organising this surgery has been a logistical nightmare. Two weeks ago he was admitted for intensive physiotherapy and IV antibiotics, extended microbiological screening, and a host of pre-op checks to optimise his lung health and get him as ready as possible for the long operation to come.

Waiting for each test result had us holding our breath.

A week in, he caught a virus in hospital; queue daily blood tests to monitor his infection markers. Three days before surgery another test result threw everything into doubt; a weekend of frantic activity ensued with nurses trying to contact surgeons, surgeons contacting microbiologists, and us barely sleeping. With 24 hours to go, we didn’t know if surgery would go ahead, only that surgery would likely carry even higher risks than we’d initially thought.

Unless you’ve lived through something like this, it’s impossible to understand the level of anxiety and strain parents and carers of fragile or complex children experience in these situations. Communication is crucial but is often lacking – not for any reason other than often there are no answers to give. Preparation for this surgery have been 18 months in the making; battling to keep him well enough, to protect his lungs from infection to reduce the risk of further damage while trying to minimise antibiotic use to minimise the risk of resistant infections. We often feel totally lost, the weight of the decisions we have to make for our children weighing heavily on our minds.

At 7am on 24^th October we had confirmation that a PICU bed was available; until that point I don’t think any of us quite believed it would go ahead. In just 8 hours, the surgery that we’d waited so long for was completed and our boy was safely back in PICU. Now to start the recovery journey, but that’s for another day.

I have always found epilepsy quite a nice word to say, it sounds almost pretty as you speak it. While I knew it wasn’t a nice condition to live with, prior to 26^th December 2015, I had no idea of the impact it could have. This meant I was unprepared for the terrifying journey we were about to embark on.

My beautiful little girl had her first seizure at 18 months old. I was applying mascara at the time, I can remember that vividly.  My husband shouted up to me that she was having a ‘fit’ (we now know to refer to this as a seizure). She had her second tonic clonic seizure about two weeks later, just as my shoulders were dropping and I was starting to think that maybe the doctors were right when they thought it was ‘one of those random things’. Another ambulance trip, a huge list of tests. Terrifying tests with long waits for results.

My daughter is now nine and has complex and drug resistant epilepsy

She has tried at least ten medications, has been on the ketogenic diet for 5 years, has a Vagus Nerve Stimulator and has a severe learning disability.  She is wonderful and adored by all who know her. She has taught us so much and made me a better person in so many ways.

It’s epilepsy awareness month, so I’m going to share a few things I have learned about epilepsy, and some tips which may be helpful.

1. It is often a shape-shifting condition.

My daughter’s seizures have evolved and changed over the years; we think we see a pattern or some stability and bam, things switch again. It is hard to achieve, but where possible, try to take things day by day. A seizure happens, it’s horrible. Then it passes and there are peaceful times. Sometimes these are not long but there is solace to be found here if you can be in the moment.  

2. Doctors don’t know everything.

Make sure you have a doctor that listens. Good doctors are curious and know that the carer or parent of a child with any condition has valuable insight. Never be afraid to ask for a second opinion if something does not sit right for you. Oh, and if you are referred to as ‘mum’ or ‘dad’, and, like me, find this patronising, politely remind them of your name.

3. Find your tribe (at the right time).

There are numerous epilepsy forums and Facebook groups. When the time is right, they can provide a valuable source of support and guidance. I went on the groups too early in my journey initially and found myself becoming more anxious than I needed to be, reading other people’s stories.  

4. There are many medications and everyone reacts differently.

Just because a medication did not work for one person, it may be another’s miracle drug. Don’t fall into this trap on the forums when people discuss meds. Unpleasant side effects may occur for one person but not another. To dismiss a drug based on hearsay is not a good idea. Always discuss with your doctor. 

5. There are other treatments as well as medications including surgery, Vagus Nerve Stimulators and the ketogenic diet.

1. Epilepsy charities have excellent information on these so read up and don’t be afraid to bring them up with your doctor.

Epilepsy can be an incredibly hard condition to live with, but the right support and knowledge can make things so much easier. Epilepsy charities are an excellent starting point. One of my favourite sayings since diagnosis is: ‘this too shall pass’. And it does.     

It was suggested that as a blogger for the disability community I should write an article on the subject of ‘feeling unseen’.  I had a think about what this narrative means to me. 

Read on, because the results might surprise you!

Last week I took my ten-year-old to the theatre.  It was a last-minute decision, one that kept me awake for a lot of the night before, worrying about the multitude of scenarios that would mean disaster, embarrassment, damage and distress. 

Nonetheless, I put on my brave face and my best jeans and took a very excited boy to see the show.  We arrived with meticulous timing: not too early to invoke fidgeting and boredom, but not too late that we would have to trip over fifteen people’s kneecaps to get to our chairs.

We navigated our way into the building, up the opulent staircase, clumsily manoeuvring round the masses, and found our seats.  As I suspected, we were a long way towards the back of the theatre, which filled me with dread due to the chance of him being disengaged with the show, being so far from the stage. 

I performed a visual risk assessment of the immediate surroundings, clocking anything that could present a hazardous distraction – that man with a hat on, that child rustling a bag of sweets, the little 50 pence binoculars attached to the seat in front, that staff member with the hand-held torch, and so on, my anxiety building.

I told myself, it was too late to back out now.

I distracted him with pre-amble and settling tactics, and then the show started.

For the first few minutes, there was a period of being a little dysregulated, and he needed reassurance and conversation.  However, we must have both become immersed in the wonderful performance, because it seemed like just five minutes later that the curtain dropped for the interval.

We walked around and explored the majestic building, him repeatedly uttering ‘enjoy show’ and ‘again’ (not fully understanding that we still had another half to enjoy!).  We returned to our seats and settled for the second half.

Again, a mesmerising performance was bestowed upon us.  The drama built up towards the end and the famous songs of Andrew Lloyd Webber climaxed in a megamix-type number, with spectacular theatricals and special effects. 

The audience was captivated, and many were whooping and whistling.

At this point, having been uncharacteristically quiet throughout, my son could contain himself no longer and in a bid to contribute to the excitement, he screamed.

Members of the audience turned around to see who had let out the shriek, and I froze in an awkward moment of horror.  Realising that he had behaved inappropriately, and pre-empting my next sentence, he then shouted out ‘BE QUIET!’, which received a few more turned heads from audience members.

By now the curtain was about to fall and the audience were on their feet, giving a standing ovation and a cacophony of thundering applause.  Feeling entirely uplifted by such a brilliant performance, despite the events of the last few seconds, I allowed myself to find amusement from his final outburst.  I grinned and chuckled, to which he flung his arms around me and asked for ‘more music’. 

On leaving our seats, I exchanged a warming look and laugh with a couple of nearby families, who had clearly only just registered that a child with additional needs was in their vicinity.

So, by now you will have come to understand why the title of this blog ‘feeling unseen’ is a positive narrative.  We *almost* went unseen in a mainstream activity, and what’s more, we both thoroughly enjoyed ourselves. 

Having spent ten years feeling unwelcome eyes on our every movement in public, it was a momentous occasion to feel unseen and to just experience being a regular family for a period of time….

…unlike our rather eventful bus trip home, but that’s another story!

Recently I have experienced a period of ‘burnout’, both on a personal and professional level. Attempting to juggle a fulltime career with the needs of a SN child, the worries caused by the cost of living crisis and the ever growing anxiety over my childs health meant that I simply could do no more.

Taking the time necessary to fully recharge and recover sadly isn’t an option – we can’t just hand our son over to someone else, leave work and take a full break for several weeks. However, taking a step back and just catching my breath did give me space to think.

How many of us have had to remind ourselves that its ok for our kids to progress at a different rate to what we originally expected? That childhood is meant to be a journey of discovery and excitement, not a sprint to the finish?

When I chose to have a family I knew that my career would take a back seat but I had originally thought that would be for a few years, until my child was a bit older and didn’t need quite such intensive parental input.

Almost 13 years later, he has the same care needs of a newborn despite having the cognition and spirit of a typical 12 year old boy.

It has meant that any career aspirations have faltered, and my smiles as I celebrate colleagues successes hide a deep sadness and a tinge of jealousy that I have been unable to put the energy into my own career.

It is hard to realise that I am suddenly some 5-10 years older than my colleagues who are being promoted to senior positions, while I remain at the same level I have been at for years.

My recent period of burn out was a direct result of taking on too much; it has served as a hard reminder that despite what the media would have us believe we can’t always have it all. For me a change in focus was in order, allowing me to focus on developing my own interests at work, rather than focusing on promotion, or a new role.

While we are fully aware of how important it is to look after our physical health as parents, caring for our mental health is often more difficult but no less crucial. SN parents give up a lot but we gain far more than we lose; isn’t it about time we give ourselves the same grace we give to our amazing kids and accept that progress no matter how small will happen. After all, life isn’t meant to be a race.

When you include me, I’m not just a kid in that class at the end of the hall.

I’m not an outlier, on the fringe of my school’s community.

When you include me, I’m an equal and valuable member of it.

When you include me, I’m not sitting alone on the sidelines, watching the other children running and playing in PE class.

I’m right there with my classmates, participating in an adaptive way. I’m involved with my peers; I’m not left to idly observe them.

When you include me, you see beyond my disabilities. You focus on my abilities.

You don’t fixate on what I can’t do; you celebrate all the things that I CAN do. You raise me up and help me to be as independent as possible. You see past all labels and limitations.

When you include me, you make a place for me.

You make accommodations for me. Not because you’re legally required to, but because you genuinely see the value in my being a part of your team. You see my worth.

When you include me, you give me opportunities. Barriers and blocked access are removed. You make sure that my environment is comfortable and safe. You ensure that I am given fair means to learn and play.

When you include me, you give me a hand when I need it. You support me with my communication device, and you want to hear my opinions. You help me find my voice and express myself, rather than having me sit by in silence. When you include me, you’re excited about my progress, no matter how slow the pace.

You and others around me give encouragement to help me succeed.

When you include me, you think outside the box when it comes to connecting with me. If I don’t respond to one strategy or method, you try other ways. You show me flexibility and understanding and give me time to process things at my speed.

When you include me, you show me kindness. You don’t stare at me or fear me. You ask questions and make a true effort to get to know me. You extend your friendship to me.

When you include me, you enrich my life, and you enrich the lives of those around me.

When you include me, I feel it. My Mom does too, and she is ever so grateful. Her heart is full when I’m included, and she’s so thankful that I was given a chance. She hopes you realize the great depth of her appreciation and that you’ll see how truly awesome I am!