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!

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.