‘She’s a loner’

‘Her play is solitary and repetitive, and she doesn’t interact with others.’

‘Socially isolated and withdrawn’

That’s just a few of the comments written by professions about my autistic daughter over the years.

There’s so much emphasis put on social development, peer interaction and developing friendships that my daughter is seen as different and wrong just because she enjoys her own company. Not only does she get judged, but I in turn get judged as a parent if I am seen to encourage her solitary play or allow her too much time alone.

When you are autistic, or you have an autistic child, playing alone is somehow seen as wrong. Would we say the same sort of comments to a child (or adult) who wasn’t diagnosed autistic? I sometimes wonder.

My daughter loves her own company but that doesn’t mean she’s a loner or has no friends.

The two are not exclusive. She happily spends time interacting and playing with her twin brother, she spends hours a week playing box and card games with immediate family and she has a few select friends at school too. But at weekends and evenings she is happiest reading alone, lining up her favourite toys or watching YouTube with her headphones on.

Being alone gives her time to process things.

It helps her restore order and calm in a world of chaos.

It gives her a sense of security and control.

It allows her privacy.

It brings her comfort.

It calms her senses which have been bombarded endlessly all day.

It slows things down for her.

It gives her freedom to be exactly who she is.

It frees her from demands.

It gives her space.

It encourages her creativity.

It brings her independence.

It fosters confidence.

It makes her happy.

Socialising and building relationships are important but pressurising a natural introvert to change personality is wrong, autistic or not. The world needs loud people, quiet people, those that work better as a team, those that can work efficiently independently, those who crave noise and those who prefer quiet, and those who have huge amounts of friends and those who just prefer their own company.

Giving autistic children and adults the tools to help them is supportive but when those same tools get used to pressure them to be someone they are not we create people who mask, become angry and bitter and we set them up to fail.

We shouldn’t fear those who like being on their own and we shouldn’t always be rushing to interact with them either. Playing alone doesn’t always mean you are lonely.

There is nothing wrong with enjoying your own company. For many autistics it’s the safest most accepting place to be.

Local authority school transport is not granted according to a child’s disability, but according to the distance they have to travel to get from home to the nearest school that is appropriate for their needs.

Freddie’s new High school is just over two miles away from our house, so we don’t qualify. But that shouldn’t be a problem, should it – I mean, in this day and age, who doesn’t have access to a vehicle?

Well, me, for a start. I work from home, so I couldn’t justify the expense of running a car even if I could drive one. Which I can’t. I’ve been on a provisional licence for thirty years. My first driving instructor threatened to take the headrest off my seat and smack me across the back of my skull every time I made a mistake (he was a friend of my husband as well as my instructor). Subsequent ones have worn fixed grins and plastic pants. I now see it as my civic duty to stay off the road rather than wantonly endanger innocent members of the public with my spectacularly incompetent driving. Somebody once commented to me that being unable to drive was ‘tantamount to being disabled’. When I gave them my honest and heartfelt response to this, they got a bit upset.

Apparently, I’m an a***hole.

Never mind, it’s a nice walk to the school. Or at least it is for me. Freddie can’t actually walk that far, even if accompanied by an adult, due to hypotonia (which makes walking inefficient and, therefore, more tiring) and severe joint hypermobility in his ankles that causes pain and fatigue during movement and in the long term can lead to the development of osteoarthritis and other musculoskeletal conditions.

He wears orthotic devices to help stabilize the joint, but they are not the most comfortable things to walk in – with tight straps at the ankle and mid-calf. Once Freddie starts to become uncomfortable, whether due to the discomfort of wearing leg braces or to the pain and fatigue that comes with hypermobility, he quickly gets grumpy and frustrated, which leads, inevitably, to him refusing to cooperate or move a step further in any direction.

The solution – buy a lightweight wheelchair. Freddie and I set off each morning on foot, pushing the chair between us. We walk about halfway like this, which means Freddie gets some exercise, which is good for his general wellbeing, then, when the fatigue and achiness start getting a bit too much, he hops in the chair and I push him the rest of the way. It suits us even if it causes a few raised eyebrows in town, when a child who can apparently walk is allowed to get into a wheelchair.

Freddie’s school is located in a very nice, leafy suburb inhabited largely by members of the professions (the only ones who can afford to live here), a few hundred yards away from a mainstream primary. Placed at strategic points around the two entrances to the primary school are several fluorescent yellow A boards urging parents to ‘Think Before You Park’ and to ‘Respect Our Neighbours’ and ‘Think Child Safety’.

By and large, parents parking their cars near the school obey these signs diligently, allowing plenty of room for the vehicles of local residents to pass easily along the road – by parking as far over on the pavement as possible, leaving just enough room for children and parents on foot to squeeze past along the tree-lined grass verges.

Am I the a***hole here, for resenting how their consideration for others completely excludes my child and me, how it fails utterly to respect our needs or my child’s safety?

Am I the a***hole for wanting to bang on their windows as they watch me impassively, engines running, as I struggle to manoeuvre the wheelchair in between their car and a thumping great tree whose gnarled old roots have rutted and buckled grass and concrete alike causing our wheels to get stuck in the fissures, or jounce suddenly sideways?

Am I the a***hole for mouthing swear-words at them behind my mask because, day after day, they are parked in exactly the same spot again, even though, day after day, they sit and watch me as, unable to get past them on the pavement, I have to push my child carefully out into a road where I cannot easily see any traffic coming towards me?

Society is unequivocal in its answer.

Yes!

Yes, I AM the a***hole for expecting others to spend time and energy considering the needs of those who are, after all, ‘only’ a minority.

Yes, I AM the a***hole for expecting my child, and others like him, to be given ‘special privileges’ like access and safety (which other people take for granted as an automatic right).

Yes, for openly voicing a complaint, I am a bitter and twisted a***hole soured by ‘misfortune’; and if I should ever dare to point out to some conveniently conventional citizen that they too could be just one illness or accident away from becoming a member of the Disabled minority whose needs they see no reason to consider, then I am the biggest, nastiest, most evil a***hole of all, for wishing it on them.

Like all parents to be, we both looked forward to seeing the developmental milestones of a child’s first few years.

Things didn’t exactly pan out as we’d expected – we’re still waiting for many of those. I also missed these with my older nephew and my niece due to distance; they simply lived too far away. In 2019 when my brother told me that they were having another baby, I was absolutely thrilled. And then, covid-19 hit.

Six weeks ago, in the very midst of the pandemic, my beautiful new nephew Elliot arrived safe and well. And it was love at first sight. He was the very image of Sam as a newborn; and it took me right back over 9 years to the day Sam arrived. Covid has meant that (like so many new aunties/uncles/grandparents), I am yet to actually meet little Elliot in person (although we’ve ‘chatted’ on the phone!).

I am ACHING to be able to give him a cuddle. But something I didn’t expect has hit me like a ton of bricks… as I’m watching baby Elliot grow, learn to smile/giggle, starting to support his own head and so on, I feel like I’ve been cheated out of experiencing these amazing early days all over again.

Elliot is almost 7 weeks old now, at this age I was starting to get an uneasy feeling that Sam wasn’t developing as quickly as his peers, a gnawing instinct that something wasn’t quite as it should be with my beautiful boy. I don’t actually know what a healthy baby around this age can do, or how it feels to cuddle them – Sam had virtually no head or body control due to his low muscle tone.

Sam was 12 weeks old when I become certain that something was amiss; two weeks later he had his first seizure.

As I watch baby Elliot growing, interacting with his brother and sister, and rapidly approaching the age when our world imploded, I can feel the anxiety rising. I’m starting to dream about Sam’s very early days, before epilepsy was part of our world but they are not pleasant dreams. I did not expect to feel this way at all.

On the contrary, I thought I’d come to terms with things. Now I realise that while I am at peace with our lives as they are, I am not at peace with the events of my boy’s first year. While I do not think now is the time to address those demons, being in the midst of a pandemic and all that, I think it might be time to start to heal at last.

Time is passing by so quickly and now we are rapidly approaching the end of the year.

In just a few short weeks, 20th October to be exact, my son and the reason I write these blogs will turn two.

Yes, it’s his birthday first and foremost but it’s still very bittersweet for me. As soon as 20th September passes and it’s less than a month to go, I begin to fill with panic and anxiety. Instead of stressing about what gifts to buy or what celebrations I need to arrange, I find myself worrying about how I’ll navigate my way through the traumatic emotions and difficult flashbacks I’ll inevitably be faced with.

Last year I found my struggles really hit me a week before Jaxon’s birthday. What would’ve been my due date the year before and why if I’d gone into labour around that time or been induced, I might have no reason to be here writing this. Instead I would’ve been trawling the internet late at night wondering what my happy, typical, probably a bit boisterous two-year-old would love to open on the morning of his birthday.

Sadly, that’s far from my reality as Jaxon has very few interests and doesn’t interact much with toys. The ones he does interact with are special but there’s few different varieties so finding a birthday gift that he’ll like but that’ll be different from what he already owns may prove troublesome this year.

Already I can’t help but reminisce about how life was two years ago.

How excited I felt about the prospect of becoming a Mummy for the first time. How all my dreams were about to come true. “This time two years ago…” I’m saying it a lot at the moment despite the fact it’s entirely unhelpful.

As my mood dips at the thought of reliving the traumatic moments I was unexpectedly rushed to theatre for a category one caesarean section in a frantic attempt to save my child or as I was told my child was alive but had sustained a significant and severe brain injury, I have to remind myself that I was told he more than likely wouldn’t survive the night.

I have to think back to the moment we signed the DNR but he turned everything around and surprised every single member of the neonatal team by breathing unaided upon extubation. I have to remember that whilst my life is not how I imagined, I really am one of the lucky ones because we came just that close to losing him.

Even once discharged from hospital at a month old we were warned that life would be far from easy and that we would likely spend more time in hospital than at home. I’ll never forget the moment that Jaxon’s paediatrician told me he was unlikely to reach his first birthday and the intense pride I felt when we did get to celebrate that incredible and miraculous milestone.

It’s a journey like no other. But my child is amazing in his own way and for him I will do whatever it takes to manage my own feelings so that I’m able to celebrate his birthday in a way that he deserves.

It won’t be easy.

I’ll allow myself time to reflect and think about the emotions that arise the week before as his birthday approaches. I can all but guarantee I’ll shed a tear at the exact time his lifeless body entered the world and resuscitation began two years previous.

I’ll allow myself that time to cry, to grieve. But that is all. Jaxon deserves only sunshine, joy and happiness on his special day, I’m determined to make sure he gets just that.

Hopefully as the years pass it’ll get easier. I only hope years from now that the traumatic thoughts won’t be so intense, the sadness won’t completely crush me and I’ll be able to feel excitement as the little boy who wasn’t expected to get this far, celebrates yet another milestone.

Imagine living your life and there always being someone telling you that you cannot do something.

You wake up one morning and want to go for a walk. No says the person. You ask why but there is no answer.

You get ready to go shopping but as you approach a place, no says the person, you cannot go in there. Again, you ask why and again there is no answer.

You take your child to the park, but the person blocks your way and tells your you cannot enter. ‘Why?’ You say, but as always, there is no answer.

Imagine that happening, every day of your life. And imagine that person being society and the world you live in. There is no answer because there is no one person. It is the steps to an entrance instead of a ramp, the pavement with cracks and potholes and kerbs without a dip; it is the park without an inclusive playground, the shop with the doors too narrow and the aisles too blocked and cluttered.

Would you accept that? Would you accept that for your child? The simple answer is no.

Do not ignore it. Do not pretend it is not happening. Turning a blind eye makes you as bad as the person who could make a change and chooses to pass the responsibilities to someone else.

It is the fault of every person who passes the buck and says it is not their problem. It is every person who turns a blind eye to what is happening before them. I got my MP involved who contacted the Secretary of State for Housing, Communities and Local Government to raise the issue.

The response received was not even from him. An issue that effects hundreds of thousands of people was not important enough for him to address himself. And the content of the response was pitiful. It attempted to state this issue is local.

Sadly, this issue is not local, if it were, I would move to a more inclusive part of our country. This is a national issue. It is a national problem that not all areas are accessible for the disabled community.

Legislation states ‘reasonable adjustments must be made to prevent those protected characteristics (including disability) from experiencing a disadvantage’ (Equality Act 2010). Well, where is the equality?

I want to take my child out without having to worry whether he will be included or not. I want to know there will be suitable changing facilities in place- that I will not have to lie him on the floor to change his nappy because he is too big for the baby changing station. That restaurants will learn to cater for people who are tube fed so I do not have to worry about taking food with us specifically for Alfie.

Make the change. Be the change.

That title is a bit of an odd one as by their nature parent carers work. So very hard.

For me it feels a bit like being in a senior position with huge levels of responsibility, having to deal with multiple experts, do all the admin yourself (no PAs exist for parent carers), all the while being so deeply emotionally invested in the outcomes that it hurts.

As with most jobs, this one comes with its fair share of pay offs, the elation when a therapy or new drug seems to work, or the shout-it-from-the-rooftops celebration for what to outsiders may look like the smallest achievement (we were recently celebrating my daughter learning to help put her arms into clothes again, following huge regression and loss of skills).

I also have another, more typical job, which I absolutely love and which enables me to be the mum and the parent carer I want to be. Importantly for me, it has nothing whatsoever to do with childhood disability.

I am lucky enough to have remained in a fairly senior position in my company while juggling hospital trips (many sudden, dramatic ones – our daughter has severe epilepsy) appointments and the actual mumming bit too. This isn’t down to me being some kind of superwoman, far from it (although you are frequently told you are ‘amazing’ when you are a parent carer – I’ll take that).

I have stubbornly maintained my career because I need it, for my own wellbeing and maintaining what can feel like a very fragile sense of self sometimes. It’s easy to feel ‘you’ being slowly eroded as a parent to a disabled child and not just with painfully frequent references to you as ‘mum’ from professionals.

Well-meaning I know but I wince every time I hear it.

My job has evolved to become a place of sanctuary for me. A place where I can use my skills and spend time with a team I love. This is a team of people (9 of us) who know all about my daughter, who know to interrupt me in a meeting if my phone goes (I have it set on a crazy-loud ring which makes everyone jump, typical I suspect for most people with a child with epilepsy) and would drop everything to give me a lift to the hospital.

They also know I need to be able to have a quick cry now and then. For many parent carers working is not an option so I feel lucky. Should I feel lucky? Ideally not. I would like to see workplaces make employment far more accessible for parents of disabled children.

I have heard stories of people being refused employment as they need to have their phone on them at all times. That’s just rubbish. We’re niche group and I don’t think there’s specific legislation around this at present.

Women seem to be taking the brunt of this too. After having a child most of us can get back to work in some form. Got a disabled child? Stop right there. At this point you are dished up a generous serving of appointments, therapies and meetings with a side dish of eye-watering form filling.

Your plate is full. It doesn’t leave much room for resuming, or starting a career.

The thing is, having a job, for me (and I suspect for many more parent carers, if they were given the chance to do it) is a form of support and that thing called ‘self-care’ which we are also supposed to be fitting in.

It can build confidence, skills, relationships, and leave you more able and prepared to handle the demands of parenting a disabled child. My ability to quickly bash out an assertive email or to challenge professionals comes from my work.

So, turns out I’m not amazing, or superwoman, I just do what I need to do and I am grateful to have an employer that enables this. I hope more parent carers can have that chance in the future.

These past few months have been pretty stressful for everyone.

Still, if there has been a silver lining to this pandemic, it is that many medical practices and clinics are providing a telemedicine option for those who are high risk.

As the parent of two kids with significant special needs and multiple specialists who are two and a half hours away from home, this has been an absolute blessing.

No long drives with cranky kids, no worrying about being exposed to anything in the waiting room, and not taking up a whole day just for a 20-minute appointment is enormous in our world.

I love the fact that I can click on a button and do an appointment by Skype or Zoom. It’s a considerable time and money saver, and I hope the option is extended beyond the pandemic.

Even though some specialties require a face-to-face visit, (such as our pulmonologist-you can’t exactly listen to lung sounds over Zoom). The more virtual appointments we can do, the better.

We were introduced to telemedicine a few years ago when my daughter was referred to a psychiatrist. We have no almost no pediatric specialists in our rural area, but our local clinic had an option for virtual visits. They have always taken place at the clinic, but during the stay at home orders, we were able to those appointments from home as well.

Tele-health expands access to much-needed care in so many ways, whether we are in the middle of a pandemic or not.

It not only reduces the risk for vulnerable people, but gives people in rural communities, people with little access to reliable transportation, or people may not have the mobility or the resources (such as a caregiver) to leave their home, the ability to receive the quality care they need and deserve.

It can also reduce emergency room visits. How many people automatically head to the emergency room for minor symptoms? I know I’m guilty of this, especially with our youngest son who has chronic lung disease. I don’t regret bringing him in, because I would rather be safe than sorry, but it would have made life so much easier to be able to have a virtual assessment before to at least gauge whether it was warranted to bring him in at all.

Telemedicine can also be cost-effective for the clinic, with lower overhead and liability costs. It also increases efficiency in scheduling and has a higher appointment compliance rate, according to recent studies.

Hopefully, Telemedicine options will continue to increase beyond this weird new abnormal that we find ourselves in!