Beautiful Caterpillar

Today is ‘World Autism Awareness Day’. Awareness, what even is that?

Light it up blue? A gimmick. A fad. A highly offensive act to the majority of the actually autistic community due to affiliations with an organisation who are perceived to be preoccupied with curing autism and with highly contentious ABA therapies.

Go red instead? Rainbow infinity sign over puzzle piece? The design and use of these came from autistic people so surely we need to support this self expression. So many potential faux pas to be made, so little awareness of what kind of awareness is actually needed. While we are at it, forget awareness, many autistic voices cry, give us acceptance instead. Its a fair request guys.

My son will soon turn seven. He loves Moana and he loves to bounce. He struggles to express himself and he struggles with sensory overload and this can cause him to hurt himself and others, he doesn’t mean to do this. Its a byproduct of him having a really tough time in those moments.

His autism diagnosis was given at age three. We have been on this road for some time now. I’ve made some faux pas, I’ve learned from them. I’ve wallowed in self pity for how it affects me, I’ve vented and then I’ve got my act together and shifted focus back to where it should be. Back to how I can help my son thrive in a world that wasn’t built for him. I spend every day of my life working on this and I will do until my dying day. I’m not an ‘autism mum’ or an ‘autism warrior’. Just a mum of two, one of whom is autistic. Just a mum doing my best.

Awareness. You can’t not be aware of my Grayson. For a pre verbal child he is noise, noise and more noise. Squeals of delight, echolailic phrases, stims galore. And this is all when he is happy. When he is not happy, not being aware of him is even more impossible.

So awareness is not quite the one. Acceptance for sure is needed, but even more than that, education. Ask questions, there are no wrong questions for me when somebody is taking an interest in learning more about my son. Ask those questions and listen.  Talk to him, talk to him even though he won’t talk back. He is listening, he is taking it all in.

The staff member on the school gate at my daughter’s mainstream school (where Grayson comes along to drop her each morning before we go on to his special needs school) speaks to him every morning. She greets him with a big smile and says ‘Good morning Grayson’. She knows he won’t answer back but still she sees him there in his wheelchair, she knows that his presence deserves recognition, deserves that big smile.

Learn from autistic voices wherever possible. Grayson communicates primarily with behaviours and leading right now. I’m still learning from him, I’m spotting patterns in triggers. Some day I hope he can communicate fully and functionally with me, and I don’t care if that’s never verbal as long as there is a vehicle for him to communicate with his loved ones. In the meantime we can learn so much from autistic adults who have been where he is and who are willing to turn their childhood trauma into life lessons for others so that children like the children they once were can be happier.

Learn with your children. They are his peers whilst at the same time being far from his peers. I need them. I need your children to know that he doesn’t understand the way they do.

I read a piece earlier this week that talked about scenarios like a school shooting, a fire, and how the writer’s child wouldn’t know to get down, to hide. They wouldn’t know to escape. As I read these words it chilled me to the bone. Grayson wouldn’t know. The opposite would be true. He would seek out the noise, he’d be drawn to the colourful flames.

He would need people to be aware, aware of him, aware of his vulnerabilities and to help him.  I would need your children to please, please help my son. His Dad and I, we won’t always be here.

Awareness is so much more than a day to plaster your social media pages with a bit of virtue signalling. Please be aware, be accepting and please keep learning.

Sometimes I am absolutely stunned by how unkind the world can be. People who stand in judgement of others who do not tread their shoes, even when they think they do. Because we are all individuals and while there can certainly be similarities and shared experiences , there are also always differences. None of us ever really know what battles others are facing.

We see such unkindness pan out in the press, in both blatant and veiled social media posts and in hushed whispers face to face (pre covid at least) or ‘banter’ around the office water cooler.

Other times, I am blissfully reminded that the world is full to the brim with kindness. Just this morning a friend of mine turned up at my doorstep after a gift bag full of treats ‘just fell’ into her trolley during her supermarket shop. She knew I was feeling a bit rubbish so she just showed up and showed support.

I was absolutely touched to bits. Later on an old friend and work colleague who, in person I very rarely see messaged me. She works in a special needs school in Stoke and has on numerous occasions been very generous with her time, preparing visual aids for me to try out with Grayson. She has been working on a social story for me to help prepare Grayson for the new enclosed, padded Safe Space bed that he is having soon.

Absolutely no duty whatsoever, just observes my social media posts and genuinely wants to offer her support. Its beautiful and touching and so very appreciated.

To top it all off, my beautiful daughter came home from school today with the weekly Values Award for her class for this week. She got this award for, guess what? Acts of kindness inside and outside school. I couldn’t be more proud.

Disingenuity cannot be avoided. We can not control the actions of others. What we can do is choose to focus on kindness. Kindness from ourselves towards others and kindness that we are blessed and lucky to receive from others. If my daughter learns one lesson from me it will be this, be for others who you needed them to be when you yourself were where they are now. She already embodies this and she makes me and her Dad very proud indeed.

When the mother’s day cards you got when your babies were two are the cards you’re still getting.

You wonder if your child will ever write their own name or even understand the occasion they’re finger painting for?

But then you smile down at the little splodge of paint, at their little squiggle where a name ought to be and you know that what you’re looking at is absolutely beautiful, so it’s ok.

When you’d love to go for a long family stroll but your child with special needs is poorly and doesn’t know its mother’s day but then you hold them close and realise how much they need you when they’re confused and in pain, and you know you’re exactly where you need to be right now, so it’s OK.

When you’ve been bitten, punched and kicked throughout the day just like any other day, but then you stop and you realise its not personal. You realise its not willful, its a byproduct of something that is really challenging in your child’s environment, something they can’t tell you functionally. You realise that behaviour, all behaviour is communication so its OK. Its actually not OK, but you know you’re doing everything in your power to find those triggers, find what’s at the crux of that communication and thats what you know is OK.

When you close your eyes and think am I enough? Am I doing enough?…And that dark voice tells you you’re not, my friend that is not OK.

Let me tell you, if you’re watching your kids and asking if you’re enough, if it really hurts to think you may not be then you already are. You love them, you’d walk through fire for them. You wake up every day wanting it to be a better day for your family.

Some days might just be survival.

Some days you may wake up to last night’s dishes because you just couldn’t face them after the relentlessness of the day that preceeded.

Some days you may realise you’ve been wearing the same bra all week and you haven’t washed your hair in days but your kids are healthy, thriving and loved. And you know what, that’s all OK too.

The ‘be kind’ rhetoric is so ubiquitous now but the people we are least kind to are ourselves.

Stop. You are enough. To your babies you are perfect in every way. So just stop and take a moment to really appreciate your worth.

Grayson is vocalising ‘mama’ lots now. Its a very new thing and it just melts me every time.

I took this for granted with Verona to whom I was  ‘mama’ well before she could walk.

I’m now ‘mama’ to my 6.5 year old son and when he takes my hand and leads me to things he wants (usually snacks) I get the sweetest little ‘mama’.

I have waited such a long time for this. I’ve never heard anything more beautiful.

‘Behaviors of concern’, ‘challenging behaviours’, whatever the term that floats around different professionals, there’s one thing for sure…everyone involved in the process of how those challenges manifest is affected.

Recently we have been brought to the stark realisation that personal care for our autistic and severely learning disabled six year old son is a 2:1 requirement. It has been at school for some time and it has now followed at home.

My husband used to work in London with some overnighters when the children were younger. When I think about how I would manage if that were still the case now, it takes the breath from my lungs. I simply could not manage, not for a day. One positive of Covid-19 in my family is remote working for Dad. As we gradually come out of restrictions we are lucky that there will not be a full time return to the office. When I need a hand, unless there is a conference call then can’t be gotten out of, I have my team mate, my soul mate, my husband. And we have never been more of a team in our decade of marriage than we are right now.

One of us deals with the nappy changing, the other protects the nappy changer from hits, kicks and bites.

At the crux of these behaviours that challenge, its really important that we remember – before we are challenged our son is challenged first, every time. Something in his environment is too much for him and it causes him to overload.

It is not his fault. Grayson has sensory modulation disorder, a subsection of sensory processing disorder and this makes physical touch that is a) not deep pressure proprioceptive compression type squeezes and b) touch that is not on his terms extremely distressing. Yet personal care is unavoidable. We have to keep our son clean.

We have measures in place. A sensory diet that is followed to help keep his central nervous system ticking, to keep him within his sensory window of tolerance in readiness for any episode of personal care. We use warm, re-usable wipes in case the coldness of babywipes upsets him. We use visuals to support his understanding. But even with all of these measures, a nappy or outfit change could see you emerge with a huge bite mark in your arm for days to come.

Afterwards Grayson is always remorseful, he squeezes me tight but this time in a cuddle, he tells me wordlessly that he is sorry and that he loves me, and I hold him right back and rock him back and forth. I breathe in and out, mirroring his rhythm until it slows and we have calm. When he is close to me like this and I can feel the beat of his heart, when he has stopped hurting me and is full of love and warmth I could stay that way forever, safe in our bubble. We are frozen in time son, you and I. Still singing the same lullabies to you as I did when you fit neatly inside my arms. I imagine us still sitting together rocking back and forth in a cuddle, still singing those same lullabies when you are fifteen and thirty.

I make this promise to my son. Your Dad and I, we will never stop reading, researching, learning, speaking to peers and reaching out to professionals. We will never give up on our quest to fully understand your needs and challenges and more importantly how we can help you through them. We will never think ill of you for expressing yourself. Your behaviour is all communication. It is our job to learn your language. Some day, we will be expeets, I promise you. Until that day we will work, every sibgle day on doing better than we did the day before.

Once upon a time not long before Covid-19 changed life as we all knew it I chatted with a grandparent at the school pick up. Grayson attends a special needs school and after collecting him it was onward to collect my neurotypical daughter Verona from her school.

On the agenda for after school that day was a haircut for each child (always a nightmare) and a visit to the school uniform shop, as next day it was school portrait photo day at Verona’s school, and Grayson was to join her for a sibling shot.

When the next day rolled around it was awful and we quickly came to the realisation that the staged, portrait photos are just not a good idea for Grayson. That sibling portrait photo that many families take for granted having proudly on display in the home would be their last until Grayson can handle the environment better.

As it stands we got one half decent shot, the execution of which sent our boy into meltdown and required the photographer to edit out the red blotches from Grayson’s face.

“If I Don’t Give Her A Break, She Will Break”.

Back to the grandparent at the pick up. She said this to me, “If I don’t give her a break, she will break”, and it almost made me cry right there and then in that pick up line. It was just so beautiful.

She was referring to her her daughter, who is a wonderful parent carer to an autistic child. This mum was away on a much needed and deserved overseas mini break…what is one of them? I hear you! I was so touched by what her mum had said and it has resonated with me ever since.

Parents of children with autism can face numerous stress factors, psychological, physical and financial. Studies have found links between parenting children with severe autism and some symptoms of PTSD.

Psychologically, the toll of caring for a child on the severe end of the spectrum comes from having to fiercely advocate for your child’s needs, feelings of grief and loss over the life you had always imagined for your family and the disparity between that and the reality, the fight for services and therapies and for basic acceptance and inclusion.

Not to mention the knowledge that your child may never live independently and will require some form of lifelong care. Your own mortality weighs heavy on your shoulders as you can’t help but wonder and worry about what their life will be like when you are no longer around. Is it any wonder that so many autism parents experience enhanced anxiety and often depression?

Physically you’re dealing with extreme meltdowns, self injurous behaviours, aggression towards others, sleepless nights that continue way beyond the norm with a typical infant, the prolonged changing of nappies with no signs of it changing any time soon.

Now imagine the toll that meeting all of those physical needs will have on your body given than a seven year old will weigh significantly more than a two year old child in nappies. Always hunched over, constantly picking up your three stone child, wrestling them into submission just to keep them clean. Routine chiropractic treatment becomes par for the course.

Then we come to financial stressors. The sad fact is that there is a massive gap in fit for purpose wraparound and school holiday care for children with SEND. So unless you are lucky enough to have familial support with childcare, you’ll likely see financial loss from the situation you find yourselves in.

I personally have gone from a career as a full time Operations Manager to now being a full time parent carer. My son goes to a special school, but there is no wraparound provision at all there, not to mention viable options for school holidays.

We enter into mortgages, car finance agreements etc on the basis of dual income, only to then find circumstances drastically altering your earning power, despite having so much to offer in terms of qualifications, skillset and experience.

Bearing in mind all of these factors, when I heard that line, “If I don’t give her a break, she will break” from my friend’s mother it struck a chord and it touched me. This lady just gets it.

Sadly, we are not in a position where practical familial support with Grayson is an option. As a consequence, at my lowest point I found myself reaching out to social services in desperation for respite support and – at my invitation have had a disability social worker come into my home to assess Grayson’s needs and my own needs in my role as his primary parent carer.

Thankfully, we were successful in achieving a package for respite support and Grayson has a wonderful carer who takes him out for two and a half hours every Saturday. We get to drink a cup of coffee while it is still hot, spend some time with our daughter and let out the big breath that we didn’t even realise we were holding in.

If you’re in a similar position, please do take any support available to you. Whether its from family, friends or the social care disability team, if your children return to school on Monday and you spend all day binge watching and drinking coffee…that’s fine. Just remember, ‘If you don’t get a break, you will break”.

Dear Lady in the gymnastics line.

Yes, my child pushed your child while we were queueing for gymnastics at the local leisure centre. I’m genuinely sorry about that.

You saw how I handled it though. You saw me say firmly, “No, we do not push. Kind hands.” You saw me turn to you and look you in the eyes, apologise sincerely, then turn to your child and ask if she was ok.

You saw me do all of that. I know you saw me do all of that because you looked right back at me. Not in an understanding, kind way but with stony eyes and a stare. Oh, that stare.

Those of us in the mire of special needs parenting know that stare.

You saw my child in his uniform, you could see that he attends a special school. Now, I’m not claiming that his condition gives him free reign to go around shoving people. It absolutely does not. He must learn that it’s not acceptable behaviour, which is exactly why I responded the way I did.

My husband and I realise that discipline is as important with our special boy as it with our daughter. If not, in fact, more so. So we always ensure we pick him up on anything he does that is socially unacceptable. We try to stop it but it’s simply not always possible.

I wonder what you expected though?

Was it for the apology to have come from my non-verbal, autistic child instead of me? For me to have smacked him? Shouted at him? Or did you expect me to go into detail about what brought him to that point today? Perhaps I should have explained how the queue to drop his sister at her gymnastics class is a myriad of sensory overloading factors and that he had reached his limit?

Well sorry, but no.

I responded in a way that was heartfelt and genuine. You chose to respond with judgement. The shame is on you.

Your child was unaffected by the push, I know it wasn’t right and shouldn’t have happened, but she didn’t bat an eyelid. She will have been well into her gymnastics class, happily doing her round offs and somersaults while my son was still crying over an incident in a line, where he had been driven to the point of sensory overload, hit his limit and pushed your child.

One a day to stay OK…

The shame, the stigma. Its there. Talk openly about how difficult raising a child on the spectrum can be and you can often find yourself shamed, accused of being ungrateful for the gift that is your child, and every child is indeed a gift.

Retreat into your new world and the silence, the loneliness can eat you up inside.

I adore my son. He and his sister are the absolute light of my life. Anybody who knows us sees plain as day the unwavering love I feel and the bond we have. However it’s been a ride that’s had my own mental health in tatters at times.

Autism affects every single facet of life. At first I fought against the reality, deluding myself that development was just delayed because he’s a boy, he’ll catch up.

Then with the diagnosis there’s a grief that you just have to ride out. There’s cruelty in that process, you realise who your real friends are, who loves you and your family as you should be loved. You’ll find that those you expected to stand with you through the thick and thin just don’t and instead new acquantences quickly become pillars of strength and you wonder how you ever managed before you knew them.

You’ll see yourself age, really quickly. As one day crashes into the next you’ll feel aches and pains in your lower back from the day to day physical care demands, you’ll spot the grey hairs and the sunken eyes in the mirror from lack of sleep and worry over the future.

You’ll lash out at your spouse, they’ll lash out at you. You can’t blame anybody else so you blame each other. You may separate or you may need counselling to get on to the same page. We went for the latter. As hard as times have been, we meant every word of our vows and somehow, in the trenches of the daily struggles of special needs parenting, we managed to not lose sight of how we felt when we exchanged those vows.

We fought!

Fought for services and therapies.

Fought for the right education setting.

Fought each other and for each other. For togetherness.

Fought for respite. Accepted that we can’t always take that together and we cut ourselves and each other a break.

I fight every single day. The effort that goes into making each day a success is huge. The rigidity of the routine that Grayson so needs, the strength to keep my calm, to be the safe space, to keep my house clean and tidy amidst the chaos of our lives. To keep my mind active when I miss having a career so very much. To keep myself from tying myself in knots in bitter resentment over that. It’s all a fight.

My daily fight starts with coffee and with my one a day.

When autism was just some word I’d heard once or twice.

When despite nursing a newborn I was younger, fresher and had bucket loads more energy than I do now.

When outings were simple and carefree. When all we had to worry about was had we enough nappies in the bag and was I wearing something with easy boob access.

When I loved babywearing, wandering around with Grayson snuggled up where I could smell his sweet baby smell and kiss his head.

If I knew then, what I know now I’d go back and cherish those simple days so much more.

I’d really take stock of just how lucky I was when I didn’t have to worry and lose sleep over delayed milestones, fecal smearing, the absolutely relentless frustration of non verbal, the loneliness, the cruelty of society, the struggles and the anguish of what was to come and the future, the big questions of who will care for him when we are too old and too weak, and worse long after we are gone.

It’s not all bad, it’s actually getting a lot easier now. The meltdowns much fewer. The general demeanour calmer, happier. School environment perfect, better understanding of sensory needs and triggers on our part. We have wills and life insurance and we are saving now and building security for both children’s futures. We have accepted that whilst one ISA will likely fund university tuition, a first car, a house deposit…the other may need to contribute to adult care needs. This word autism that was just some word, we know it now. My word, do we know it.

Age 3, that was the year of hell. That was the year I questioned if I’m up to this at all. The year I cried myself to sleep so many nights. Where I alienated myself from people, felt bitter and angry, when I grieved.

We are emerging now with a wonderful 5 year old from the other side of the most difficult, challenging time we have ever faced in our seven years of parenting.

It’s going to be OK.