Being heard

Most parent carers will know how it feels not to be heard. Perhaps it has been in getting a diagnosis, trying to explain symptoms that get brushed aside, or in navigating a system that has been designed with the funding available in mind, ahead of the actual need.

I have been lucky enough to have become involved with some brilliant opportunities which have enabled me to get my voice heard and also to bring about change. I’d like to encourage other parent carers to consider doing this too.

This blog is of course one of those opportunities. Firefly has used its channels to provide a platform to parent carers. I’d like to see more companies doing this, especially those that work in the disability sector. Many of us will have seen adverts flying around for opportunities to get involved in research from universities, or to feed in our lived experience to improve services from local authorities.

Here are some of the things I have learnt / experienced since being involved in this sort of stuff.

This is just my take, and it is not for everyone, but by sharing my experiences, I hope I can help others understand what getting involved may look like. 

  • It can be hugely validating to share personal experience, get heard and see changes made as a result. I have sat on consultation groups and seen researchers take on board my suggestions and make changes. It’s a powerful feeling in a life where I can so often feel powerless. We as parent carers hold knowledge that can change the course of research and services.
  • There is normally a group of people with lived experience involved on projects. Meeting people with similar lived experience can feel great. I have often found myself wishing we had more time to chat and connect. I have seen some research projects build in time for this.
  • All good research projects will be clear about the fact that you will likely be sharing personal experiences. This can often feel hard, and it’s worth thinking about how you may feel doing this.
  • All research projects inviting public involvement should be paying for your time. No-one does this for the money (it’s only a token payment / voucher) but it is vitally important that our contribution is valued as everyone else’s is. Our experience is often painfully won and to share it is a big deal. That needs recognition.
  • Being involved in these opportunities has been a great learning experience in working with academics and meeting new people from different backgrounds.
  • Most opportunities these days are online meetings, this can be much more practical than travelling to a meeting for a parent carer.

The more people that get involved, the greater impact of the parent carer voice. I’d encourage anyone to consider it next time one of these opportunities crosses your path.  


When it is established that your child is disabled and you find yourself being promoted from parent to ‘parent carer’ (a promotion no one asks for), it can, alarmingly quickly, feel like your sense of identity starts to erode.

This can often start with medical professionals, where these relative strangers may start referring to you as ‘mum’ or ‘dad’. This phenomenon has presumably become commonplace as it saves under-pressure medical staff from having to remember more names than they need to.

Many parents without disabled children may experience this from time to time, at a quick GP check or occasional hospital visit, but parent carers may find themselves being referred to as mum or dad multiple times a week by different professionals, verbally and in writing. Some parent carers are unbothered by this, and for others it painfully jars. There is even a campaign called Don’t Call me Mum.


In a situation where there is no time to get to know the name of a child, for example when paramedics are attending to my daughter having a seizure, it’s entirely understandable that they’d call the parents or carers by a generic name.

I can also understand it when having a conversation with the child present, to make everything seem a bit less formal. When we are on a high dependency unit for a week with a one-to-one nurse, I want to be addressed by my first name. As I want to be by consultants and nurses that we have worked with for years and other professionals that are not responding in an emergency. Our brilliant core team quickly started using our names from the outset, and of course still do.

When I am called mum however, the issue is not simply about how it feels to have my identity diminished, but the agency it subtly robs me of. It makes me feel patronised and, particularly in decision-making discussions, I do not feel as if I am being seen as an equal partner and it doesn’t feel collaborative.

I feel I have a lot less power when being referred to as ‘mum’ than by my name.

In my experience as a parent carer, I have to actively work to maintain my own identity. This can mean pushing back on medical appointments which are given with little notice (as it is assumed I do not work); pursuing my career; and building relationships with my daughter’s team that feel professional.

I know professionals have a lot on their plate. I know that not everyone is bothered by this, but many are, and this is one small change that can have a bigger impact than it may seem.

Care for the Caregiver: Loving Oneself

As of 2020, there are approximately 50 million caregivers in the United States. Almost one-third of caregivers provide at least 20 hours per week of care. In addition, approximately 58% of caregivers are women. Caregivers typically do not receive any formal training and learn as they go. (Supporting Caregivers | CDC)

I never thought of myself as a caregiver. My daughter lost oxygen at birth, is cognitively and speech impaired, and as her mother, I was taking care of her. When she turned 18, I started receiving Adult Services Pay to take care of her in the home. Even then I found it difficult to “get paid” to take care of my own daughter.

As the years have gone by, I have appreciated the extra income to help care for her; although, it was not enough to allow me to be at home to take care of her full-time. The difficulty came when she was done with school. I needed someone to take care of her while I was working. In searching for a caregiver for a disabled adult I found the cost would be $15-$20 per hour.

Add in my drive time and I would have no money left from my paycheck.

I am sure there are many parents, legal guardians, and caregivers that cannot afford to work because they cannot leave their person at home alone. I am a single parent taking care of my daughter. I was in such a terrible position that I knew only God could take care of. “When I am afraid, I will trust in You.” Psalm 56:3 NIV. As always, God did come through and provided me with a job where I work from home and have a lot of freedom.

We need a lot of freedom when we have another person to care for. We must take them to their appointments and be there for them in the moments they need help, which can be any moment any time of the day. We are 24-hour caregivers. Then we have our own appointments. Looking back, I don’t know how I worked full-time while my daughter grew up. I had help for sure, but I was still the one to take her to her appointments, then I had my own appointments. Missing work was such an issue, but necessary.

The subject of caregiving is so large with so many different topics. Today, I want to speak to all of you about your own care. Whether you are caring for someone young or old, or in between. We are still caring for another human being, which takes away from our own self-care and can take a toll on our health.

“Caregiving is also a public health concern because it can lead to physical, emotional, psychological, and financial strain.” (Supporting Caregivers | CDC).

Being a caregiver can result in depression and anxiety.

At least 1 out of 5 caregivers report fair or poor health. Most of us tend to neglect our own health when we should be making that a priority. We cannot take care of our loved ones when we are not feeling well or are not healthy ourselves.

This is to urge all of you, no matter what age you are as a caregiver, to take care of yourself. We all have different things we enjoy doing. Make time for those things that bring peace to your heart, mind, and soul. Quiet time is one of my best escapes and is the most healing for me. I do my best to spend at least half an hour a day sitting quietly, listening for the voice of God to bring me peace and to guide me on this journey.  I also make sure I go to all my doctor’s appointments and routine checkups. Ladies, make sure you get your yearly mammograms.

I know this can be a difficult subject because some of you do not have the means to get even half an hour to spend to yourself. This is to urge you to find someone and ask them to help you. If you absolutely have no one, Community Mental Health offers much help with obtaining the assistance one needs.

Other important things that help us gain strength, so we can be our best selves when caring for another, is to make sure we get plenty of nature, exercise, and laughter.  

Seek out help from respite care.

. I cannot urge these things enough. Without all of this, I do not know how I would be coping now that my daughter is 30 years old. My life, since she was born, has been happily dedicated to caring for her, but I also know I need to have a life of my own that fills me up. This is not to say that having a life of my own is not challenging, but I do the best I can. Something is better than nothing.

Sometimes, it is like we are forgotten. It can feel this way because others do not know the true depth of what we are dealing with. We can’t expect others to know, they are not in our shoes. So, we need to reach out to find the help that we need. This is not only for you, but also for your loved one you are caring for.

Do your best to live in the moment, one day at a time. “Spending your days doing what you have control over (your thoughts, words, and deeds) and leaving the rest to God is the only way to peace, calmness, and yes, joy.” (Rosenberger, Peter, Hope for the Caregiver 2014).

He’s Broken Another One..

At his previous school, my son was pretty legendary for his ability to reduce otherwise perfectly normal, intelligent individuals into quivering nervous wrecks. He has the kind of epilepsy that can appear like one of those incredibly violent summer thunderstorms, turning a calm and sunny day into a torrential, chaotic maelstrom in a matter of seconds.

Many is the time we’ve had the dreaded phone call to say he was being blue lighted to hospital and to meet him in resus. Inevitably, by the time we arrived he’ll be lying in bed flirting with nurses and looking perfectly fine if a little pale, but not worse for wear for his ordeal. His teaching staff on the other hand invariably look like he’s ripped their soul from their bodies.

If there is anything that comes close to the terror of watching your child stop breathing during a seizure, it’s having to watch SOMEONE ELSE’S child, who you have responsibility for, stop breathing during a seizure. And these wonderful, caring staff had to experience this with my son on a pretty much daily basis.

Since moving to high school we’ve had a remarkably good run without major incident.

We knew it couldn’t last, sure enough a week ago he decided to throw a cracking seizure  into the mix that school hadn’t seen before; so stunning was this one that no fewer than three ambulances were in attendance plus an air ambulance medic by the time Daddy arrived. The first I knew about this dramatic incident was when I arrived home later that evening to the comment from Daddy of ‘he’s broken another one’ referring to the trauma our child had just inflicted upon his poor teaching assistants!

One positive from this is that in we know our faith in his class staff is well founded. They may have felt utterly wrecked by events, but my boy was happily flirting as per usual within hours of the type of seizure that should by all rights have landed him in hospital thanks to their swift actions. They cared for him as well as if he were their own child, and that means the world to us. We know how lucky he is – both in how well he recovered but also in how outstanding both his schools have been.

My contribution to the day’s events? An attempt was made to fuss my child and to ensure he was ok… this overt display of maternal concern was tolerated for about 30 seconds before I was gently but firmly pushed away. Yeah. He’s fine 😊


Th first word. One of life’s big milestones that we expect to happen in early childhood. As an enlightened parent of a child who has only a few words, and is essentially non-verbal, I look at people in the non-disabled world and realise that they don’t know. They don’t know that if it turns out that your child is not going to be using words to communicate, that there are countless other ways in which they can get their needs met, build relationships and tell you they love you. 

We are conditioned to expect speech. So much so, that I have recently heard the term pre-verbal being used a lot to describe children that are not talking when expected to. If this works for you then that’s brilliant, I imagine in a situation where you may still be expecting a child to use words to communicate, that this would feel right.

For me, the term pre-verbal is heavy with expectation.

. Life has taught me that expecting certain things isn’t always helpful, and working on living in the moment makes for a steadier path. Our little girl did begin to talk, seizures started and her speech slowed, she got more words then regressed and stopped talking completely for 6 months. She slowly regained some words only to lose it all again for a year.

She now has a beautifully curated collection of gorgeous words; some ‘off the shelf’; others, bespoke, artisanal creations of her own. Those who invest the time to get to know her know exactly what they mean. We were devastated both times when her words went, and we will be if they go again. But we have learnt that she is still there, sometimes under clouds of seizure activity, but she’s still there.

Our girl communicates with us uniquely, and beautifully

We know what she wants, we know how she feels. We know when she is excited, and we know when she is frustrated. She’ll bring us her shoes and our car keys to let us know when she wants to go out. Anyone that has received a fierce little hug from our child knows how magic it is. It gives me a high that no words ever could.   

I wish I could reassure any parents who feel devastated after being told that their child will be unlikely to talk, that it will be so much more than ok. The only way to discover this though, is by living it and, like the buds breaking this spring, beauty and magic will appear, often even on the days that feel darkest.  

Please Think Before you Park

Certain situations that I encounter really take restraint. A whole lot of restraint.

As a mother of a child with disabilities, some things just get me fired up. I can overlook many little things and take life in stride. However, it requires every ounce of self-control within me to remain cool, calm, and collected when people deliberately misuse accessible parking spaces.

These designated spaces exist for a reason; when they are used legitimately, they serve a MIGHTY purpose.

They provide individuals with disabilities access to their communities.

They provide freedom to safely exit a vehicle, at a close distance to a person’s destination.

When I am forced to repeatedly circle a parking lot in search of a spot to accommodate my child and her wheelchair, AND I see cars in them without a legally required disabled tag or placard, all my decorum is lost.

When I watch someone effortlessly hop out of their vehicle to “run in really quick” at Starbucks or Walmart, while taking up a space that someone genuinely needs, my blood boils. Some disabilities are more visible and obvious; some are more hidden. Some disabilities are temporary; some are permanent. In every circumstance, ALL individuals with disabilities have a right to those spaces. Non-disabled people who merely want to avoid crossing a busy parking lot to shop or to cut out a few extra steps to grab their latte do not.

In my town, I’ve seen it happen again and again. I’ve always known it to be an unlawful act, but I never realized the self-centeredness of it until it was my own child who needed the accommodation. I was blissfully unaware of how selfish our society can truly be.

I can really feel my blood pressure rise when people park directly in the blue stripes that accompany an accessible parking space. These lines are called “access aisles” and every precious inch of them is valuable to someone who needs them.

Access aisles are NOT meant for motorcycles to use.

They are NOT an area to conveniently abandon a shopping cart.

These painted stripes are designated for wheelchair accessible vehicles, and they provide space for an individual to transfer from their vehicle to their mobility device. They also give room for wheelchair users, like my daughter, to access their wheelchair ramp and safely exit. I sincerely hope that the majority of those who misuse this space are simply uninformed, and that they would never be so purposefully careless. Sadly, I’ve had people look me straight in the eye as they intentionally parked over into the lines, while I struggled to carefully lift and manoeuvre my child guardedly to the ground.

I have stickers plastered on my van that read “Please do not park within 8 feet.” Sometimes, I feel like they need to be posted in big, flashing neon lights. I have her placard that I hang on my rearview mirror every time we park. I would NEVER use it when she’s not with me. I don’t have the right to do that.

I wish people would understand how tricky and complicated things can become for individuals with disabilities, (and for their caregivers), when they misuse these spots. We must continue to educate and enforce; we hope that citizens take heed. It’s so very simple…Please think of others before you park.

Posture, transfers, and what lies around the corner.

One thing I’d say is a constant everyday every moment thought in our life with Amy is posture/transfers and equipment. Another constant is the fear of the unknown – what new and terrifying diagnosis lies waiting around the corner?

Very very early on in Amy’s life we were introduced to positioning. Making sure she’s upright enough that reflux is minimised. Not leaving her on one side too long. Rolling up towels and wedges to give her support and symmetry. It becomes second nature eventually as you try and ensure a healthy spine and hips.

Amy is now 9 years old. She has quadriplegic cerebral palsy. Her type is athetoid/dyskinetic. Whilst she is non-mobile, she has a severe movement disorder and moves constantly. The movements are sometimes referred to as dystonia/chorea/ballism/dyskinesia. She’s really strong and her muscle tone fluctuates – she can be super stiff one moment, and like a rag doll the next. She’s on quite a few medications to help with the pain and to help her gain some more control of her movements.

A few times a year we are invited to a cerebral palsy clinic with the orthopedic doctors.

They give her a thorough check over and send her for an x-ray. Thus far we have been so lucky that whilst her hips are tighter on one side – she is not currently displaying any signs of hip displacement or scoliosis. So far I have left pleased each time that things haven’t worsened. We have several friends who sadly have needed or need hip surgery, or who have scoliosis. It’s a devastating journey, fraught with some very difficult and unfair decision making. No one wants their child to need surgery or be in pain. Amy’s constant movements though troublesome, do minimise her risk of things such as pressure sores, or being stuck in one position for too long in the night for example.

Everyday I say to myself hmm she has been in her chair a few hours… maybe we need to bob home so she can have a pad change and a stretch.. I don’t want to put too much pressure on her hips and have her sat uncomfortably for too long. Equally I may think oh gosh she’s been lay down a lot today. This isn’t good for her chest or reflux, maybe she should go in her walker to help build up some strength etc.

It can be really difficult ensuring she has all of her postural needs met and I know that her school also work hard getting her in her standing frame plenty to help her bone density. I feel a daily guilt that we don’t reintroduce her sleep system – she already has real difficulty sleeping and the last few attempts were a disaster!

So imagine my surprise last week when I learned that Amy actually has several small fractures in her spine!? 

In December last year Amy was very poorly in PICU with a collapsed lung. As a follow up from this she had a CT scan under general anaesthetic to help us establish the severity of her lung damage. Amy’s chest infections have become worse and worse over the years and medically she is much more complex with it than before.

The idea of the scan was to see in detail what is happening in her lungs to help us build a better treatment plan for her. 

The scan showed mild bronchiectasis. We expected this.

What we did not expect were the fractures.

We were told this is due to osteopenia (or low bone density). This can be quite common in non-mobile folks as they are not weight bearing as much, thus don’t have the same density or strength of bones.

I had heard osteopenia mentioned in relation to Amy before but didn’t pay it much attention as I knew she was having all of the right physio and until recently hadn’t sustained any fractures.

We have now been told that she will not be safe to have percussion chest physio and thus her treatment will be more reliant on nebulisers and suction. But even worse, she now needs to have IV bone infusions to help strengthen her bones.

I am so relieved she had this scan otherwise she would have been living with these painful fractures without us knowing. As Amy is nonverbal it can be really difficult to ascertain why she is distressed. Often you are treating it blindly hoping paracetamol or a position change will help. But it really made me sad to know that she is contending with this on top of everything else. 

I am now in a position where I am not sure what to do for the best. Do we amp up the physio to help her bones. Or does she need more bedrest? We will be liaising with various specialists (endocrinology, respiratory, dieticians and chest physio) to make sure we get Amy exactly what she needs. We have a lower threshold now for giving pain relief, and we are to take much more care when doing transfers.

She apparently won’t be in agony with the fractures but it will be causing her pain.

Sometimes it can be disheartening that in spite of your constant attempts to do the best thing, that things still go wrong. Each new diagnosis she receives I hope to myself that this is the last one. It seems sometimes that you all just can’t catch a break. For years we struggled with horrendous gastro issues. No sooner were they resolved we were dealing with life threatening uncontrollable epilepsy. Once the epilepsy was better managed then chest infections became a huge and constant issue.

It seems now that in our pursuit to help her lungs, we have found a new obstacle to tackle. In the process of trying to minimise interventions and medications we are very often thrust back into reality with a bang and made to consider even more of those things. I don’t want to rant – I want to be mindful, and grateful, and happy – but equally no parent wants their child to be in pain or to suffer and we will move heaven and earth to make sure they get what they need for the best quality of life and happiness.

I am torn sometimes between accepting things as they are, and wanting to scream up at the sky “why her? why us?”.

It all does seem very unfair at times. Why should our little girl ever have to suffer. I’m not sure Amy would call it suffering as she is a tough cookie and faces each day with a tenacity I have never seen in a person before… but part of me thinks that’s because she has no other choice. She knows no different.

I know she and we will get through it. And we will continue our constant ‘umming and arring’ over positions, equipment, comfort and posture, and we will continue to hope for the best. We hope to extend the life of her lungs, to avoid as much as possible those difficult conversations relating to hip and spine operations.


I want to start this post by sharing a quote from the brilliant actor and disability advocate, Sally Philips: 

“The siblings of special needs children are quite special. Absolutely accepting and totally loving, from birth, someone who is different mentally, and has a different way of seeing the world, is a wonderful trait. It’s a trait I wish there was another way of getting, but there isn’t.”

It was Sibs Day recently, a day created by the charity Sibs. We have started a tradition in our family where we celebrate it like mothers’ or fathers’ day. It starts with breakfast (pre-ordered the night before in bed) and for the last two years has been me and my older daughter heading into town, her directing the shopping trip, buying treats and having lunch together.

I am so pleased we started this tradition.

She knows her life is a little different to that of her friends and other more typical families but accepts it with such grace. It feels fitting for us to celebrate her role as a sibling to a disabled child, to show she is seen and, although it is a painful fact that our attention cannot be split evenly, that we recognise that and we care deeply about her. 

Of course she expresses (thank goodness) sibling anger and frustration frequently. This is a healthy part of any sibling relationship and I am glad she doesn’t feel she has to supress these emotions, just because her sister is disabled. When I check in with her, she reminds me that she knows of life no other way.

It’s what she has always had to live with.

Almost without us noticing, she has created her own coping mechanisms. Reading is a big one, Minecraft is another – places where she can escape to other worlds from the safety of our home.

She loves nothing more than her little sister’s fierce hugs, but accepts that sometimes they are not freely given. When they are however, and the two of them are giggling away, my heart soars. These little pockets of joy can lift me up for days.   

I also know she has benefited from opportunities that her friends won’t have had. We’ve never been on holiday abroad together and the idea of a family lunch out or cinema trip is absurd to us, but other, less typical experiences have helped her to grow. She has seen our resilience in the toughest of times and observed us being calm in a crisis; she has built relationships with the carers and enablers that are in our home daily; she’s learned to overcome her fear of hospitals and talk to the nurses and doctors.

She even helped us do a tube feed the other day and felt rightly proud.

Perhaps most profound of all is the experience of being totally accepting of someone who operates in an entirely different way from her. It’s a huge privilege to watch my daughters grow alongside each other, in a life I could never have imagined.

Sensory Circuits – Therapy and Fun Combined!

Are you familiar with the term ‘Sensory Circuits’? I wasn’t, until Jenson returned to school post-Covid lockdown, and his school introduced the ‘Recovery Curriculum’.

The key principle of sensory circuits is to facilitate children’s readiness to learn and engage, by stimulating and focusing their bodies and minds.  The concept is particularly effective for young people with sensory processing issues and neurodiversity, as it can build skills in self-regulation, while also developing the vestibular (balance and spatial awareness) and proprioceptive (body awareness) systems, which are often out-of-sync in neurodivergent individuals.

Every day since September 2021, Jenson has visited the school sports hall every morning for 15-20 minutes, where he participates in sensory circuits, lead by the Occupational Therapy team.

At first, I was told, Jenson was not too compliant. 

He would run to his favourite stations, crash and play, and then be done!  But as time went on, he steadily progressed his ability to engage in each of the stages, and within weeks he was apparently showing younger children how to do it! 

As one of the school’s livelier and more energetic students, the therapy team have been astonished by the difference in focus, engagement, and calm that Jenson has demonstrated through participating in this daily.  Similarly, his teacher has been astounded by his resultant improvement in attentiveness to learning tasks in the classroom.

Sensory Circuits is comprised of three sections: Alerting, Organising and Calming. 

In the alerting stage, children engage their gross motor skills to release energy, anxiety or stress, with activities include bouncing, crashing, skipping and jumping.  Next comes the organising stage, where children will channel their energy towards more finely tuned activities such as balancing, target throwing and coordinating. 

Finally, in the calming stage, children are encouraged to centre themselves into a composed state, through activities such as rolling on a peanut ball, deep pressure under a weighted blanket, or lying inside a lycra wrap.  Music at this stage can also be added to calm and connect.

The transformation in the classroom for Jenson within weeks was incredible. 

Having recently been diagnosed with ADHD (to accompany his other primary diagnoses), he has always struggled with the ability to attend to activities and follow instructions through.  However, his teacher reported a notable shift in his focus and attention in the classroom, which we believe to be a direct result of the daily sensory circuits regime.

What’s more, it is so easy to create a sensory circuit at home!  Cushions on the floor, throwing socks at plastic cups, drinks coasters and tape-measures for balancing, spinning on the office chair, it’s pretty easy to be creative. 

I’ve found that during school holidays, it has been easy to recreate a sensory circuit at home, so that the school routine can be continued.  I have been so excited to watch Jenson’s younger brother enjoy them too, and he has enjoyed playing a part in helping his older brother to engage and participate alongside him.

I am so pleased that Jenson’s school initiated this activity and hope that they carry it on as a long-term morning activity, because the benefits have been fantastic.