The impact of being a parent to a disabled child has a huge impact on relationships, particularly with a partner.

I remember feeling scared on a few occasions after I realised I was a parent to a disabled child (we did not have a sudden diagnosis, it was a gradual process) when I’d read some statistics about break ups being more likely. I did not want that to happen to me and my husband and I wondered how I could stop this. I felt apprehensive about the future.

In many ways we have been lucky.

While there is an obvious day to day strain on our relationship and we certainly have more ‘spats’, on a deeper level we are closer than we have ever been. We have two types of strain on our relationship – one is the day to day; our daughter turning the house upside down, only one of us being able to leave the room at a time, taking turns to go to the loo and having to announce it first so the other person will not leave her side, smashed plates, poured liquids and whining.

The other is the more scary, medical side; seizures most nights, random daytime seizures, the heart-lurching calls from school, multiple hospital admissions (some terrifying). While both types of strain put severe pressure on our relationship, we have also found that it has made our foundation stronger. We are a tighter knit team, both determined that our daughter has the very best care and support.

I know this is not the case for all relationships and I realise that we are lucky that we have largely approached this as a team and, for the most part, agree on decisions for our child. We accept that we will argue and, as a counsellor once said to us when we did joint counselling, get ‘itchy scratchy’ with one another.

This happens most days but passes quickly thankfully.

I now know that it’s not a sign of our relationship being in trouble; far from it, it’s communication, albeit a little fiery at times.

Making time for each other has to be the most clichéd, yet, as clichés often are, sensible piece of advice we were and still are given. Most of the time this is watching a box set together. Occasionally we orchestrate a mini break if we can line up the care. Spending time on our own is also vital. Both can be challenging when there is a disabled child at the centre of things.

These days we go for the ‘mini wins’; a lunch together and a bit of TV if we are both working from home and the kids are at school, allowing our older child a bit more screen time when our disabled child is at respite, meaning we can chill together (watch more box sets).

The other key thing is finding a fair split of the increased mental load. I have written about this in another blog here.

I have had to accept that my relationship is different from most people I know. It is different but it’s certainly not less than. Exchanging that knowing look when someone not in our world says something like ‘will she grow out of it?’ or ‘I don’t know how you do it’; or when we encounter a professional we both find irritating, bonds us further and reminds me that we are a team.

It’s so easy sometimes to let the overwhelming busyness of life take over. Some days it feels absolutely unrelenting. My goal each day is to have at least washed the dishes before I go to bed so that the house is a bit nicer in the morning. Such a basic thing yet somehow sometimes so hard to achieve! 

I think those dishes represent something a bit deeper – a need for a feeling of control over life. Life with a medically complex child can be so unpredictable and sometimes being vaguely up to date with something as mundane as housework helps tether me to reality.

I have this habit of attaching greater meaning to things. For example, ducks represent freedom to me. I will never forget being told to keep talking to Amy when she was in NICU ventilated, in a coma, and hypothermic. I begged for her to get better. Told her about all the great things in the world. I promised to take her to see some ducks and feed them. (Which we do. Usually to her disgust these days!)

My most recent metaphor is acorns.

. I absolutely love autumn and all it represents. The beautiful colours, the harvests, the pumpkins. Autumn to me represents comfort. Blankets, coffee, TV, home, peace. Home is so important to us all and nothing will make you appreciate it more than frequent hospital stays. There is nothing like your own space and your main people. 

Acorns to me represent collecting happy memories and stashing them away to help you cope through harder times. I suppose I got this idea from squirrels gathering food for winter.

If truth be told; life on a day to day basis can be very stressful for us. Amy’s moods can switch quite suddenly and she experiences most moods in extremes. It means that happy moods are an absolute delight to behold. You can’t not smile when she smiles, and her laugh is infectious. 

Unfortunately though her cerebral palsy comes with chronic pain, dystonia, seizures, gastro problems, learning difficulties, and frustrating communication challenges. When she is angry she is very very angry. All you can do is stay nearby and try to prevent her from injuring herself (or indeed those around her).

Her anger and sadness can be incredibly intense.

During those times I remind myself not to take it personally – she does love us – this isn’t about us – it’s about her right now. We ride the storm together, I regulate my breathing, I count in my head. I wait for the right moment to try and comfort or distract her; always gauging the best time to give her space or be close to her side.

I read once “Your child isn’t giving you a hard time, they are having a hard time.”. I also read that all behaviour is communication. During these times she is telling us something, and we need to do our best to try and ascertain what it is.

During these turbulent moments I refer to my acorn collection. The day out last week with fellow HIE families. A beautiful adapted building with hoists, ball pits, slides. Amy was really happy during this whole session. Unfortunately the hours following it she was very distressed and we couldn’t ascertain why.

I clung onto the success of the morning – we have previously had to vacate special events early so this was a huge win for all of us. I think back to Friday last week when Amy could access our front door for the first time ever – her laughter and excitement reverberated throughout the house as I pretended to knock on the door to visit her.

I think of when we find a new song she loves and how we all sing it over and over to keep the smiles coming.

I think of walking through the woods with my dog and my best friend and her dog; knowing Amy is safe and happy at school, knowing I’ll make a nice meal for tea for Phil and I, knowing that this too is normal everyday life – not every moment is paperwork, appointments, bad news, medicine, advocating, washing etc.

A bad hour is not a bad life and whilst there will always be challenges, you will always be adding acorns to your collection too. Amidst the absolute chaos that is my life, I know that I am so blessed with my amazing family and friends. I have the most amazing partner, beautiful and clever daughter, lazy and gorgeous dog. I try to never lose sight of the incredible things life has to offer, even this year when I have grieved the loss of a best friend and also our baby that was due in October. We must try to live our lives to the fullest even if some days that looks like snuggling up on the sofa and doing nothing and on other days it looks like a hike in the wilderness.

Next time you feel the weight of the world on your shoulders just remind yourself how far you have come. Take a moment to reflect on all of the amazing things you have to be grateful for. This moment will pass, and better moments are ahead. Appreciate the small things, be kind to others, tell those close to you how much you appreciate them. Take a deep breath, refer to your metaphorical acorn collection and take solace in the comforts autumn has to offer.

Having just spent a lovely week in the gorgeous north east of England it felt like a good time to sing the praises of one of the best attractions we visited while there. As luck would have it, we had some good weather so decided that we’d take advantage of this to visit Beamish, a large open-air museum located in County Durham.

The first thing we noted was just how big the site actually is, and more to the point given that the Dude’s wheelchair cannot be described as lightweight, the site is on a rather large hill. This is County Durham after all, and we had remembered to bring his wheelchair battery pack, so this didn’t pose a huge issue. The situation was made even easier by the provision of a regular tram/bus service that runs around the entire site – for those who are wheelchair users there is a specially adapted, vintage, bus that comes on demand.

Our absolute favourite was the 1900’s street with its pharmacy, bank and Hardware store (where we lost my Mum for a pretty long time as she chatted to the volunteer about products she remembered from HER grandparents’ home!). The volunteers could not have been more helpful with the wheelchair, each taking the time to chat with visitors about their own particular part of the museum.

The site itself is pretty easy to move around, although its worth being aware that there are some limitations.

The dentists in the 1900s area for example is located, as it would have been, in a small terraced house which was absolutely not wheelchair accessible – at this point the Dude was having an afternoon nap, so the more mobile of us took turns to go inside and cringe!

Beamish has really taken accessibility to heart, the wheelchair adapted bus was fantastic (and very welcome) but the biggest impact is made by the Changing Places located fairly centrally in the 1950’s area of the site.

While it’s not going to be everyone’s attraction of choice it is definitely somewhere we will return to; as a family it had enough to entertain everyone from the Dude (12) up to Nana (who is a bit older than 21 shall we say). As an educational day out it really is superb, and it definitely gets top marks from us for the changing places and accessible bus. Definitely worth a visit if you’re in that part of the country.

The mental load is well documented but poorly understood. I remember a few years back, Women’s Hour on Radio 4 created an online quiz to reveal how chores are broken down in relationships. I duly completed it only to find that the split of chores in my relationship was more equal that I thought. I was shocked as I knew this not to be true.

I then realised – the quiz just asked about visible stuff, cooking, cleaning, putting the bins out etc. It failed to include the hidden chores, the mental load: organising presents for your child’s friend’s parties, filling out school forms, school WhatsApp groups (find me one with an even split of men and women), sorting GP appointments, dentist appointments – the list continues.

The mental load is largely carried by women. What mainstream media rarely if ever touch on however, is the explosion in the mental load when you are parent to a disabled child. I’m going to go out on a limb here and say it increases approximately by 6-10 times (not a scientific estimate but I bet I’m not far off).

This mental load is turbo charged, XXL, untameable.

This mental load is like no other mental load a woman is likely to see. DLA forms, EHCP forms (those two alone are weeks of work each), appointments, appointments, appointments, corrections, calls from school, pushing back, fighting for services, this list is infinite. It is unpredictable and often charged with painful emotion. 

Pretty early on into this journey I realised that I could not carry this on my own. I work part time but the time I had ‘off’ was barely enough to keep the basic stuff going, let alone the mental load that comes with being a parent carer. I felt like I had three jobs. I knew I had to split this with my husband. The key thing here though is I did not want to delegate.

That does not reduce the mental load for me, it merely makes me a project manager. I knew that if I asked by husband to book an appointment, or order more meds, he would. But it was the thinking of, remembering, asking and then (inevitably) checking and chasing that was the mental load. Meaning I may as well have done it myself. There is an excellent cartoon description of this here.

So, here’s what we did.

We split the main load into two categories – medical and social. My husband became Head of Medical and I became Head of Social (we actually jokingly call ourselves this and treat it like jobs, perhaps we should get business cards made). It has worked brilliantly.

By doing this my husband is responsible for doing all of the thinking, liaising, ordering, booking and attending of all medical stuff, from meds to appointments. I don’t think about it. If we run out of meds it is not my responsibility. While I attend medical appointments,  I do not book them.

I do all the social stuff, education, social care respite / enablers, DLA, EHCPs. There are frustrations, namely that medical secretaries will call me first, because I am a woman. I politely inform them that I do not deal with medical things and, while I of course complete the call so as not to waste NHS time, I request that next time they call my husband and that they need to update their records to specify this.

The last time I had to do this was a few weeks ago. We split the load about five years ago. Make of that what you will. It still enrages me that women are called by default.

I want to share this method in case it helps other families. Women continue to carry an unfair share of the mental load. I can only imagine what more we can achieve if this was more evenly shared.

I have two boys, both of whom love sport. My seven-year-old is a competitive tennis player and academy football player, who trains and competes on most weekdays and weekends.

My ten-year-old loves all and any physical activities on land and water, loves learning new skills, and loves being around people. He also has disabilities.

The opportunities for my younger son are boundless. Sadly, the opportunities for my older son are less forthcoming.

I know this is a common theme for children with disabilities, and I understand why. I believe there are a few key factors that contribute to the lack of sports clubs or sessions for people with additional needs, and I have been considering what they are, and what could be done to improve the situation, so that more young people with disabilities can experience the fun and benefits that their siblings enjoy.

Cost plays a major part.

Because of the needs of the individuals involved, to facilitate activities it requires either a lower number of participants (less revenue for the club) or a higher number of staff (more expenses on wages). Either way, without an abundance of experienced and reliable volunteers, the activity is likely to be less financially viable.

Willingness is critical! To make for a successful activity, it requires staff and volunteers who have a passion for teaching children who are different, who are not going to be the next sporting star, but who are going to enjoy it in their own special way. Unfortunately, sports leaders can more often be geared towards developing talent, rather than facilitating opportunity, while the currency of sporting venues is often that of profit rather than fun.

Equipment can be costly too! Specialist equipment is sometimes needed for people with additional needs, which is not readily available. Everything from swimming pool hoists to specialist wheelchairs for tennis/basketball etc, and all the little purchases and adaptions in between.

Training and experience can be a barrier.

Staff may need additional training to deliver sport sessions for people with disabilities, or may feel they lack competency in understanding how to interact with children with conditions such as autism, learning disabilities, hearing or sight impairments, for example.

But what are sporting bodies doing to combat the distinct lack of provision at grassroots level for children with disabilities? Some national schemes are in place, such as some funding initiatives across the Football Association, and grants available to sporting groups via Sport England. However, I don’t personally see this translating to any infrastructural increase in provision that is readily accessible in our area.

As a parent at the forefront of seeking out disability sports for young people, and as a member of a community where I know many others in the same situation, it appears that there remains a noticeable void in opportunities. But here’s the positive bit. Personally, for my family, we have directly benefitted from some amazing goodwill incentives and individuals who have gone above and beyond to fill the void.

Here are some good news stories!

My tennis-crazy son’s Head Coach picked up on how wonderful it would be for both brothers to be able to enjoy tennis at the same setting, and he crafted a new inclusive weekly tennis session for a small group of children with learning and other disabilities to attend. The children play tennis-themed games, undertake drills and skills, and have a lovely and relaxed tennis session with one of the inclusive coaches. I suspect that the club makes a loss on this session, due to the low number of participants, but despite this they appear committed to the cause and all families involved are truly grateful. A PE teacher from my son’s specialist school gives up his Sunday mornings to run a British Athletics-affiliated disability athletics session.

They have fundraised vast amounts of money for the costly equipment needed for physically disabled athletes to race on the track.

This wonderful group has afforded many children the opportunity to access adaptive racing and running who would never otherwise have had this chance, and have even taken some children to competition level.

Up until 2022 my husband ran a disability football group which was conceived through the lack of such opportunities in our area for disabled children to play football alongside their siblings.  In our area there was provision for disability football through our local football club, but we noticed that there was limited provision for children with learning difficulties, neurodivergence, or indeed for children to play football alongside their siblings.  The group was hugely popular, and my husband is hoping to re-start a similar group again sometime soon. 

I would love to see more done to address the scarcity of sporting opportunities for young people who cannot access mainstream sports clubs and sessions.  I’d love to hear some good news stories about individuals and clubs that have gone above and beyond to facilitate opportunities!

Our boy is not like the public poster-face of Down’s Syndrome. He won’t be sitting GSCEs when he leaves school, he’s unlikely ever to be a model, run his own business, perform in a play, or a in TV show. I doubt if any organisation aiming to raise positive awareness of Down’s Syndrome would want to feature us as part of their publicity campaign.

This is not me underestimating him, or absorbing or giving in to society’s low expectations of people with Down’s Syndrome. This is me being hand-on-heart honest and realistic about how he is right now. This is me accepting how he is, accepting him for who he is.   

When he was born, I had all kinds of ambitions and plans for him: he would go to a mainstream school, he would grow up to have a job, find love, maybe get married, have his own independent (or nearly so) life.

We would equip him to do all these things.

I read to him from the moment he was born, even in the NICU. I brought a pushchair with a seat that could be turned to face me so that I could sign to him all the time, even when out and about. I brazened out the story time sessions at the local library, took him to Tumble Tots. I enrolled him in a mainstream nursery, and in a specialist provider too, to give him a developmental ‘leg-up’ before starting school, walked miles to take him to physio and speech therapy.

But even before he reached school age it became apparent that he would be totally lost and overwhelmed in a mainstream school, certainly where we live: schools and classes tend to be large here and inclusion is generally poor. The ones I approached had neither the understanding, the infrastructure, nor the will to even keep him physically safe. There are, however, some excellent specialist schools, and he has thrived in this supportive environment.

However increased understanding and increased maturity have not yet brought about an increased awareness of danger, or an increased willingness to follow instructions, rules, and procedures laid down by others, no matter how necessary or important.

Nor have they brought about a decrease in his tendency to abscond or quietly sneak off and wander away.

They have not brought about an increased awareness of the personal boundaries of others, nor the rules and expectations governing appropriate behaviour.

At the moment, I honestly do not know if he will ever be able to fit into any kind of workplace, or, indeed, if it will be possible for any employer to actually keep him safe.

What the passage of time has brought about is an increase in the self-stimulating behaviour or ‘stereotypies’: the rocking and pacing, the random whole-body jerks and sudden vocalisations. When out and about we are aware that others find these behaviours distracting and even alarming. We are starting to get some funny looks which I studiously ignore.

I ignore these looks because one thing that has not changed through all these years of having to adjust my hopes, ambitions, and expectations to fit our reality is the love I feel for my son and the pride I have in him.

These are unconditional and do not depend on what other people think of him or his behaviour, they do not depend on his level of ability, nor on how close he can come to being like a typical person (I roundly reject notions of ‘normality’, throw them over my shoulder in disgust without a backward glance). I love him for who he is, I am proud of who he is, and I will look anyone in the eye and tell them so.

Most people are aware of Down’s Syndrome, in as much as they can recognise when they see a person with it and are aware of what they THINK it is. Most people seeing my son would be aware that he has Down’s Syndrome. But what about Freddie himself? Does he NEED to be aware that he has it?

It was seldom, if ever, necessary to mention it at home. At home, Freddie was just Freddie, just one more quirky individual in an already quite quirky family, a child with his own particular set of needs, just as his brother and sister each had their own particular needs which were not the same as each other’s or those of the kid down the road.

When you came right down to brass tacks, his needs weren’t that much different to most people’s really. On a day-to-day basis, we didn’t really think about Down’s Syndrome at all. As far as Freddie was concerned, he was no different to anyone else.

 But then I thought: what if he overhears us talking, to a doctor or another professional, or someone else? What if he realised we were talking about him and thought it was some kind of secret, something to keep quiet or be ashamed of? Or what if he heard it from someone else, somebody with incorrect and outdated ideas of what Down’s Syndrome is? What if his first introduction to the fact that he has Down’s Syndrome was someone else’s negative misconceptions?

An incident occurred that demonstrated to me just how easily this could happen.

Luckily, that time, Freddie remained blissfully unaware, but it made me realise that he needed to know, and he needed to hear it from us, so that we could take charge of the narrative and equip him with the correct information. But how to broach the subject with him? We didn’t want to make a big deal of it, we just wanted to present it as a fact, like his blue eyes and pale sandy-coloured hair are facts.

As it happened, a natural opportunity presented itself when I told him one day that we had an appointment at the Orthotic clinic to get him measured up for new boots. He asked me why we had to go the clinic to get boots for him. I explained that he has a thing called Down’s Syndrome and that some people with Down’s Syndrome have extra-stretchy tendons that can make their legs very tired and achy when they were walking.

He didn’t ask many questions about it on the day or afterwards, but now that we had broached the subject, I would occasionally point it out to him if I saw someone with Down’s Syndrome on TV, just so he’d know he wasn’t alone – role models, if you like – but he never showed any great interest, to be honest.

Then one day, we bumped into an acquaintance of mine who also has a young person with Down’s Syndrome. We chatted for a while, then said goodbye. Freddie and I went into a café, and as we were waiting at the counter, he asked me how old the young person was. I told him they were the same age as him. He noted that, also like him sometimes, the young person was using a wheelchair.

I took the plunge and asked him if he had noticed anything else they had in common

He said they both wore glasses. “Anything else?” I fished, wanting to test his understanding, to see if he noticed. But he hadn’t, so I told him that they, too, had Down’s Syndrome.

This time he asked questions and I answered them in straightforward terms, talking about chromosomes, which I described as ‘building blocks’. We talked in simple, general terms about what it might mean for someone if they have it, and about how it was a part of who he is, but only a small part.

Then he suddenly (and randomly) announced that he’d like to be a barista and a baker in a coffee shop just like the one we were sitting in, so we started talking about that instead.

Afterwards I was browsing in a shop when Freddie suddenly shouted, loudly: ‘Has she got Down’s Syndrome?’ Out of the corner of my eye I could see a pushchair, and at that moment I wanted the floor to swallow me up, imagining what the child’s mother would make of Freddie’s pronouncement. But a voice piped up: ‘Yes, that’s right, she has!’ 

Since then, Freddie has asked me a few times if he has Down’s Syndrome, do I have Down’s Syndrome, does Nana, does his sister? So it seems like he is beginning to explore his understanding of it.

One thing I do hope he understands is that we wouldn’t have him any other way.

“When will the twins go to school here mum?” A lump in my throat forms and my eyes start to well. I knew this question would arise one day out of my five-year-old’s mouth. I just wasn’t prepared for it on a Tuesday morning feeling a bit sleep deprived and thinking of one million other things. I hadn’t really prepared for the scenario.

“I don’t know they ever will.” My voice broke at the end of the sentence, choking back the emotion flooding inside me.

“But why not mum?” Of course, that would not settle the curiosity of a bright young girl.

“I just think there are better schools more suited to your sisters’ needs.” Naively I thought that would sort this conundrum that’s unfolding.

Grace, desperate to go to the same school as her younger twin sisters said “Well, I can just move with them?”

I hurry her into the school drop off, “lets chat about this later yeah? Have a good day!”.

As I get back into the car and drive off, I can feel my tears rolling down my face. I wish they all could go to the same school; I wish the same education for Grace would suit her sisters. Being objective about the children you have in front of you today to the children we dreamed of in pregnancy is hard but necessary for everyone to get their needs best met.

I forgot to dream about the scenario both my kids used mobility aids, the dystonia, epilepsy, medications, syringes and care/support plans that dominate our lives. They weren’t featured in my dreams and I am having to factor in now every time I leave the house with the girls.

We have been to visit out local state funded special schools that are best equipped to meet the girls’ needs and both are fabulous; peers are like our girls, teachers that aren’t phased by any medical jargon, equipment strewn down the corridors that look very familiar to the ones in my living room. Just one cravat – both schools are full and oversubscribed, they have wait lists and are both about a 2 hour round trip to get to the school gates in the traffic.

After months of liaising with our local council about our wishes, how to meet the girls’ needs from a health and education perspective, the council’s current offering, we have all agreed to an EOTAS package

This acronym stands for Education Other Than at School.

For some children this means going to an alternative provision provider, others can have teaching assistants come to deliver preset work by a teacher to support the child’s learning. In our case we have converted a classroom on site that is a room full of toys to enhance the children’s development.

We employ the teaching assistants that are trained and leave them to deliver a sensory led curriculum that’s overseen by a teacher on a monthly check in. They go off on educational trips that tie in with what they are learning for this term like a trip to the zoo & aquarium. The girls’ physical education means heading to hydrotherapy and riding for the disabled. By the time they see peers at the weekly social group they are in education 5 half days a week.

In the end, it may not have been the school set up I dreamed of when I first held my twins in my arms. It may not have been the path I had imagined for Grace and her sisters. But today, as I hold the keys to their unique educational journey, I’m filled with hope and gratitude.

Our girls are thriving in an environment tailored to their needs, Grace can join her sisters on weekends at the classroom if she wishes, bridging the gap between the educational worlds they navigate. It’s not the journey we planned, but it’s one filled with love, resilience, and the promise of a bright future.