Climbing the Metaphorical Mountain

“It’s not the mountain we conquer, but ourselves.” Edmund Hillary

Perhaps you knew the moment your baby was born.  Or perhaps a doctor sat you down one day and gave you The News.  In that very moment your destiny, and destination, changes forever.

In the beginning it is a very emotional affair.  One emotion that almost all parents will feel is DESPAIR.

Where on Earth do I go from here? How on Earth will life go on?

Your search box is filled with text that you didn’t know existed last week.  Words with far too many letters; words you can’t even pronounce.

All you can see is a mountain in front of you, so high that you can’t see the top.  So steep that you only see a wall.  The ground is rugged, uninhabited, sharp and dangerous. No human would choose to climb this mountain.

But slowly, after what could be days or months, the realisation comes over you that you have no choice.  In order to proceed with life, and for the sake of your family, you must climb this mountain.  You’ve got to climb it with no ropes or devices, no user manual, no training.

You hear distant voices coming from the top of the mountain.  People encouraging you, cheering you on, urging you forward.  They are sending you well wishes and virtual postcards from the summit.

You google ‘top of the mountain‘ but the results are too scary and daunting for you to deal with right now.

You see some distant figures making the climb above you.  You catch sight of some who are clambering effortlessly, while others seem to be slipping down the shingle and making little progress. But all of them are beckoning eagerly, telling you to keep on climbing.

The people at the top are hollering to you that it’s great up here.  They are telling you to keep your spirits up and stay positive.  You find it really difficult to believe them.

You challenge them with questions that you aren’t sure you want to hear the answers to.  You desperately want to hear the success stories, the heart-warming tales.  You aren’t ready to listen to tales of those who fell off the mountain.

You want to hear that each and every warrior making that journey reached the top and lived happily ever after.

Finally, finally, after what seems like five hundred years condensed into five minutes, you reach the mountain’s peak.

Words cannot express the euphoria you feel.  You have finally reached a place of acceptance, a feeling of peace and serenity.  You feel like you are home.

Not only does it feel like home, but you cannot even remember your former home.  It’s like you chose this place; this place chose you; and now you would not choose to live elsewhere, even if the choice was presented to you.

Some days the view is amazing.  You still find yourself gasping at the breath-taking little things that you could never really see from back down on the ground.   Some days, there is a rainbow so stunning it catches your breath.

Other days you are exposed to the harsh climate of the mountain top; the relentless rain and the blistering sun. The harsh and cruel storms and destruction that no person should normally be exposed to.

But as those storms pass, you once again see the sparkle of the paradise in which you reside.

You glance down at the rest of the world going about their lives on the ground, most of whom are unaware of the realities of life up here on the mountain top.

You send regular updates to friends and family, and sometimes they even come to visit.  But they don’t get to see and truly understand the miracle of this place like you do.  They don’t comprehend when you try to explain, the magnitude of the mountain and of the journey you undertook to get here.

Only those who stand alongside you here on this summit will ever truly know how you are feeling, what you have experienced, how you feel fear and how you rejoice in life.

From time to time, you hear a distant voice calling you from down on the ground.  You look down and see yourself, a few months or years ago. That person, and the family stood there around them: that was you.

You shout down the same words of encouragement that were once shouted down to you. The family send you the very same questions that you once sent.

And of course, you answer them with the same patience, understanding and empathy as yours had once been answered.

A little while later, that family comes to join you.  And life goes on.

Hospital Fear

Now more than ever in these terrifying and uncertain times, I need to keep my child well to avoid a hospital admission. When that same child has had seven inpatient stays in less than four months, the odds are stacked heavily against us.

The last couple of weeks have been rough to say the least, caused primarily by Jaxon being full of a cold leading to intermittent desaturations throughout the night. He’s also teething and struggling with reflux, we’re awaiting a GJ tube placement to enable us to feed him directly into his bowel and hopefully alleviate the relentless sickness we deal with on a daily basis. Add all these together and it’s not an ideal combination for settled days and restful nights.

I’m caring for Jaxon entirely alone at the moment to protect him as best I can. The sleepless nights and none-stop mumming during the day are taking their toll and I’m worn down. I’m trying to keep my chin up, I’m reminding myself regularly that this isn’t forever and that life will return to some sort of normality once again. I find by telling myself that I’m not dealing with this alone, the whole world is going through it too, helps marginally.

But doing it alone, well it’s hard

The time we spend at home is filled with fear and anxiety at the best of times. No sooner as Jaxon is discharged, I’m waiting for the next admission. He’s not a medically well child and unfortunately regular hospital admissions are just a big part of our lives. 

That fear is now magnified on an exponential scale. I’ve had full blown panic attacks, cried every single day and become so stressed I can barely even manage to eat due to the paralysing fear that Jaxon may end up back in hospital before this crisis is over.

I struggle to manage the fear on a normal day but I’m able to keep us busy, introduce Jaxon to new experiences and spend time with people we love to enable me to push through. I try ever so hard to enjoy the time we have at home because I know I can blink and find that we are back in hospital once again. Keeping us busy at the moment isn’t as easy and my options, as with everybody else’s are limited.

But I have to try and carry on.

I can’t let myself become so consumed by fear to the point I’m no longer able to parent the child I love so deeply.

That fear became a reality on Thursday last week when after night after night of dealing with an unsettled Jaxon, I was advised to take him up to hospital to have him checked over.

I’m unable to put into words how I felt driving up to the place where I knew there would be a chance, no matter how small, that one or both of us could come out worse than when we went in.

I choked back the tears as I walked straight up to the ward. I was given a mask to wear as I headed with Jaxon to the assessment ward. The silence was deafening and the reality of the situation we’re facing sunk in.

He was given the once over by the doctor and after what felt like the longest four hours in an incredibly long time, thankfully we were given the green light to go home.

As I walked out of the hospital, my mask still on my face and Jaxon’s muslin cloth draped over him slightly in an attempt to protect him, I found myself holding my breath, almost running down the corridor to get through the doors. I drove home, I felt numb. Those four hours had run me into the ground. I wanted to get home and lock us away from the world again.

I realised once home that despite the fact that the fear of Jaxon being admitted to hospital in the future will never leave me. When all this is over, that fear won’t ever feel as great as it does in these current times, it won’t ever crush me like it did on Thursday.

And for that it’s highly likely I will feel just an ounce of gratitude.

I know there will be many parents out there who are caring for children who are medically compromised in one way or another. I know they too will be feeling that intense and debilitating fear that I feel. To each and every one of you, I so desperately hope you can all get through the next few weeks and months without having to see the inside of a hospital.

You Do You

Two days ago, I went to pick up the dog from the vet and was gone an hour! Did the vet take an hour? Of course not, but in this time of quarantine I needed a breath. We are all navigating this time differently.

For me I am the primary caretaker, so I hear “mom” all day long I can’t even take a shower alone. Now don’t get me wrong I absolutely love my kids but when I have zero time for myself I take advantage when I can. Upon picking up the dog from the vet I drove to grab a tea from a local coffee shop (drive-through of course). I then went to a pet shop and wandered around with the dog and talked and told my life story to the employee there. Did he need to know my life story? No. Did I need to tell my life story? Yes! I needed some interaction with somebody in person besides my husband and kids.

I didn’t really tell him my life story but I know I seemed desperate for attention.

Some of us are using this time to clean closets, work on themselves and work out. Some are binge watching TV, eating Cheetos and trying not to have a mental breakdown. I definitely fall into the latter category. Does this make a failure? Not in any way. It is the way that I am surviving this anxiety. Sure, I am eating out and having the cheeseburger I would normally avoid but I am searching for something to make me feel good. Now is not the time to judge. Now is not the time to point fingers. Now is the time to understand that we are all different and cope different ways. Now is the time to show empathy for those who may be having a hard time.

There is nothing more heartbreaking during a time like this than to see fights break out and people begin to point fingers at each other. Our lives are vastly different but we are all human and have human emotions. Do what feels good and is right for YOU and your family.

The first few weeks of this quarantine I was blown away with the kindness of others and the love people where showing each other. I have noticed that this week the tides have turned (at least on the news and social media). When we quarantine we protect those who are vulnerable. We live in a selfish world and for a few weeks people unselfishly stayed home and took precautions. This was to help children like my son.

To all of you who did and will continue to do so, THANK YOU.

For all the amazing people working on the front lines, the people who deliver my groceries and my son’s supplies and medicine, THANK YOU. This is a changing world and I hope that we can come out of this with more empathy and humility.

He’s the Expert

As the realisation dawned about the seriousness of the pandemic situation, which arguably I had been resisting accepting for a while, I felt panic engulf me. Having been relatively laid back about it all and determined to continue as normal, it quickly became clear that due to Sebastian’s Duchenne diagnosis plus the long-term steroid mediation he is on, he is considered “high risk’. And that was it – no more school for him or his brother, his dad working from home, no leaving the house for at least 12 weeks.

While I panicked for them and the loss of their “normal”, of their school lives, learning, seeing friends and social development, if I am very honest a lot of the panic was for me.

Panic came from a loss of control, of the routine that keeps me coping and a fear of a total lack of ability to cope with it all.

It is losing the routine which has been particularly difficult for me. Having been a stay at home mum since Sebastian was born nearly 6 years ago, I have carefully developed my own “timetable” for my week which, while seeming to be pretty laid back, I am pretty attached to. I hadn’t realised until now how crucial this has been to my coping mechanisms after Sebastian’s diagnosis. Control in a world over which I have so little.

Never has that been truer than right now. The irony of needing my coping strategies to deal with a situation that in itself means that I am unable to use my coping strategies.  

Sebastian, with an ASD diagnosis alongside his Duchenne, needs routine. He thrives on it. I had no idea how he was going to begin to compute the concept of not being at school, or not being able to leave the house to do his favourite things, of his dad working from home, of not having contact with his 1-1 TA and all of the other amazing people who offer him support and help him to live as well as he can.

I have watched him over the last few weeks. He rarely identifies or expresses much emotion and it is difficult to know how much he understands about what is going on. But I have observed in total awe. Within the basic structure I try to give our days, he plays familiar and repetitive games. His imaginative play going into patterns some of which he had previously left behind. His bunny comfort blanket is never far away and used in play far more than it has been recently.

Almost every afternoon we make a tent in our living room. It has to be made in the same way every time. We play the same scenarios. And then often we go inside the tent, with his duvet and his cuddly bunny and snuggle up and watch telly. The same telly. Sometimes we don’t even go inside. But it’s there.

I watch Sebastian soothe himself. Not with talking about how he feels, not with tears, not with cuddles and a conventional requests for reassurance as his brother does, but with the comfort of repetition, of the familiar, of the construction of some control in the absence of any. Of making his immediate world safe and secure.

For him, I think the world is often overwhelming, physically challenging, frightening and hard to understand.

That in essence is how so many of us feel right now. Sebastian has already developed coping mechanisms for these feelings in ways that the rest of us never have.

His ability to find order in the chaos, to find the safe places and retreat into them when he needs to is a skill not to be underestimated. We all need it, perhaps more than we realised. He is the expert. He is, as always, teaching me.

And when this is all over, the memories of snuggling in the living room under a bedsheet strung up between two chairs will be the ones I cherish. Because it made me feel safe when I was scared.

Birthdays and Breathing

Sebastian was born not breathing. He was grey and floppy. But he was alive.

April is HIE Awareness month. One of Sebastian’s (many) diagnosis, subsequent to his cerebral palsy, is HIE, Grade II. Grade III is the most severe. I have never written about his HIE before. I have only added it to the list of his diagnoses on every hospital and application form I have ever had to fill out. Every form. The people who read those forms know what it is. The people who have children with HIE know what it is.

Hypoxic Ischemic Encephalopathy (HIE) is a type of brain damage that occurs when an infant’s brain doesn’t receive enough oxygen and blood. It is a dangerous condition that requires immediate medical intervention. HIE affects 20 out of every 1,000 full term births. HIE caused Sebastian’s cerebral palsy, so it’s not subsequent at all. In fact, it is the reason for his long list of diagnoses. Cerebral Palsy. Seizure Disorder. Gastro-intestinal Reflux Disorder. G-tube. Non-verbal. AAC user. Bla, bla, bla.

Sebastian’s birth was traumatic. It was not hard. It was not challenging. It was not exhausting. It was traumatic.

Okay, it was all of those things, but the most important word here is trauma. I never processed this trauma. Instead I immediately started caring for my baby. I was alone in a big city, far from ‘home’ and family. My husband was a journalist working very long hours and after his two-week paternity leave, had to return to work. I suffered extreme postpartum depression and I had no idea. We moved to Cairo. I found all the necessary therapists that I needed to before the move. I did not go back to teaching. I became a stay at home mother. I became a full-time caregiver.

I did not process the trauma. I am processing it now through (EMDR) therapy and it’s hard and it’s big and it’s life changing. I’m thankful.

Sebastian will be twelve on May 6th. I got my ears pierced when I was twelve and my dad gave me teeny-tiny diamonds to put in them. It was a milestone birthday for me. Sebastian’s twelfth birthday feels like a milestone for me too. I always celebrate Sebastian’s birthdays BIG. Because he is alive. He almost wasn’t. This year for Christmas I bought him and his dad tickets to see the Toronto Symphony Orchestra play to the backdrop of Star Wars: The Force Awakens at Roy Thomson Hall. It was supposed to be on May 9th. It was a double gift, Christmas and birthday. Which was good because those tickets were pricey! I got an email a few days ago that said this event had been postponed until May 11th. 2021. Thanks coronavirus.

How do I celebrate Sebastian’s birthday big this year? How do I bring the people together in his life that have made up the beautiful community we are now a part of? How do I soothe my soul and celebrate the life that was so hard to bring into this world? Last year we had a May the Fourth Be with You birthday party and Kylo Wren and Rey came to teach the kids how to be Jedi’s. The year before that we went bowling. Before that we had an Animal Ambassadors, they brought rescued animals to our house for the kids to learn about, hold, and pet. He had just recovered from major hip surgery. We always have coconut ice cream sandwiches or special dairy free cupcakes with outrageous toppers at school.

I celebrate birthdays BIG.

Because we are here. Sebastian is here. He’s alive. He’s thriving (his clinics that follow his weight may argue, but I assure you, numbers don’t mean everything). Sebastian loves Star Wars. He has a service dog named Ewok. He loves chocolate and ice cream. He loves cooking shows and wants to be in charge of a café menu someday. He likes to judge who prepares the best pancake bites during our Saturday morning pancake breakfasts. He loves jokes and shares them daily with his step-by-step switch or eye gaze computer. He has friends. He makes them laugh and keeps them accountable. He loves music and dance parties and basketball and soccer. He is so much more than his diagnoses, but they are also a part of his identity too. They are also a part of mine.

HIE has impacted our lives in so many ways. It’s a thing. It happens to a lot of babies. No one ever told me that before I gave birth. I wish they had.

Just me and my boy

It’s day 19277492 of complete isolation from the big wide world. Yes, that’s a slight exaggeration I know, but when you’re parenting a child with complex needs and your entire support system has been ripped away from you, that is pretty much how it feels.

Still, if I take away the fact that I’m surviving on roughly 1-4 hours’ sleep per night, I’m getting very little time during the day to do anything for myself and I’m absolutely run ragged with a million and one things on my to-do list, I’m actually doing okay.

More importantly, I’m enjoying a large chunk of the time I’m getting to spend with my child with no distractions, no appointments to attend and nowhere to go. Don’t get me wrong, there are plenty of moments in the day I’m not finding enjoyment in such as cleaning sick, dirty nappies and teething troubles. But overall, I’m finding time to smile just by being with my boy, here in the moment. The little boy who has no idea why the world has just stopped.

Needless to say, it’s hard for all of us. For the most part we’re no longer living, we’re just existing. We can’t go to the shops, we can’t go out for lunch, we can’t take our children to experience new places. Schools are closed. Lots of people can’t go to work. All of a sudden, the outside world is a threat. Social interaction that many humans thrive on is now to be avoided to eliminate risk. Life as we knew it three months ago has ceased.

The world is different, frightening and full of unknowns.

Perhaps I’m coping better because I’ve already had ample practise at isolating. Jaxon is 18 months old and we’ve spent over 200 days of that time in hospital. 13 weeks of that was last summer. The world was turning, people were living, and we were stuck inside the same four walls with no end in sight due to Jaxon’s feeding issues and uncontrolled seizures. I was depressed and by the end, having watched Jaxon fight for his life for four days on mechanical ventilation after his gastrostomy lead a total lung collapse, I had to claw my way back from rock bottom.

But I did. It took time, but I got there, and I learnt to smile again. Being cut off from the world and the people I loved bar a handful of my closest family all but destroyed me. I was determined to fight back and once discharged I set out to make memories with my boy. I wanted to make up for everything we’d missed out on, the summer fun and the family times. We’d lost so much time and I knew it wouldn’t be long before we’d be back there. I had to be kind to myself and remind myself that I was dealing with an unusual and difficult situation. It affected me greatly, but I did bounce back.

Now we’re here all over again only this time I’m not doing it alone. The whole world is united in this fight and everybody is waging a war from the confines of their own home, no matter how great or small.

I don’t doubt these extraordinary times will affect so many people mentally, but when it’s all over you will bounce back. Nobody can say how long that will take, for some it might happen straight away, others it may take a great deal of time, but you will get there and you will be okay again. You will smile again, and you will find enjoyment in life once more. Your mental health will recover.

So how do we get through the next few hours, days, weeks, months? However long this takes. I’m slowly discovering that the key to surviving this without having a complete breakdown is routine. It would be easy to let the days pass without filling them. Maybe not for all of us. But I know I’ve had days where I’ve felt like I can do no more than tend to Jaxon’s basic needs. A day or two like that is fine but I find that if I fill my days with purposeful and enjoyable activities, I feel better and my mood is lifted. That then rubs off on Jaxon and he seems happier too, although he struggles to show me.

Getting out of bed, showering and getting dressed. Now there’s nothing wrong with a PJ/duvet day or ten but I always feel more awake and ready to tackle the day when I’ve jumped in the shower and got myself dressed. It may feel like a real effort when you’ve got nowhere to go and nobody to see but do it for yourself and you may find that it’s just what you need to give you a boost.

Eating and drinking well is imperative, although something I too struggle with. Once I’ve tended to Jaxon and all of his needs, I barely have time to sit down never mind cook a meal. Some days I’ve stuffed my face with junk and that’s okay too. We’ve got to do whatever we possibly can to get us through and if that means a day or two sponsored by chocolate and crisps then fine, enjoy yourself.

We have little to enjoy at the moment after all.

Get some fresh air. If you have a back garden use it, have a picnic, get the paddling pool out. Look up to the skies, they’re so blue in comparison to how they are normally due to the reduction in traffic and air pollution. If you don’t have that space, then use your hour of exercise time each day if you’re not having to shield yourself or your child. I sat outside in the back a couple of days ago with Jaxon and that fresh air was a wonderful feeling.

I love to draw. I don’t pretend to be any good, but any kind of creative activity is good for the mind. Be it drawing, colouring, baking, crafting. It’s a therapeutic avenue and it passes the time. It gets you thinking and you have something to show for it at the end. Get your children involved, no matter their capabilities you can include them and they’ll probably get as much enjoyment from it as you.

Listen to music, watch TV, binge on Netflix. DON’T spend too much time watching the news. At the beginning of this crisis I was spending between 2 and 4 hours a day with the news channel on. I was falling asleep to the BBC news tune on loop in my mind. Then I wondered why I’d wake up full of dread and anxiety. A couple of weeks ago I made the decision to limit my exposure to the news to just 15 minutes in the morning, the briefing in the afternoon then occasionally a quick check before bed. Instead I fill our days with feel good films, CBeebies, music and game shows. I can honestly say since making this change, I’ve felt much better.

If you’re home schooling your children, don’t pile too much pressure on yourself to be perfect.

The majority of parents who are having to home school have no experience of teaching and the general feeling seems to be if you just do your best then that’s enough. If one day your kids spend 12 hours in front of the computer or TV that is fine too. There is no pressure to get it spot on, we’re all just winging it as we go. I’m meant to be doing regular therapy and exercises with Jaxon but some days I’m completely exhausted that I just don’t have the energy. If your kids are fed, clothed and loved in these circumstances then believe me, that’s enough.

Finally, make memories, be kind to yourself, enjoy the time you have with your children. Yes, it’s draining and tiring but this chance to be with your families in these circumstances such as a lockdown will (hopefully) never come round again. Make the best of the time you have with your little people. Then make the most of the time you have to yourself once they’re in bed (if unlike mine, they allow you to). Before we know it, this crisis will be over and life as we knew it before with the hustle and bustle will return. Children don’t stay little forever. It’s absolutely fine and entirely normal to feel angry, upset, stressed and depressed about the current situation we’re all finding ourselves in. But we are all in it together so we have to do what we can to make the best of a bad time. One day this will all be like a bad dream, a moment in history. I know that for however long this lasts, without piling a ton of pressure on myself, I’ll simply be doing my utmost to make the best of the time I’m at home, just me and my boy.


Frustration and Soul Searching

This is a very different sort of post from me as it isn’t focusing on my favourite Dude for a change. Instead, I need somewhere to put down my own frustrations and helplessness, as a result of the current pandemic.

Like every one of us, I am much more than just a wife and mother.

I’m a daughter, sister, aunty, cousin and friend. I’m also a highly trained, knowledgeable and skilled laboratory scientist. I hold a doctorate in immunology. And I am absolutely DESPERATE to be able to help my friends and others in the NHS.

My skills could be put to use doing testing assays to evaluate whether a patient has covid-19, researching the virus itself to learn more about it and more efficient ways to protect those most at risk. Colleagues are already doing both of these activities, others are researching vaccines and donating as much PPE as we have in the labs currently being unused as the majority of the research laboratories are now locked down other than those involved in covid-19 activities.

However. As an adult classed as being ‘at risk’ (crap immune system, inflammatory issues and grotty lungs), caring for a child in the highly vulnerable category (multiple underlying health issues etc), it would be utterly idiotic and irresponsible of me to join my friends and colleagues in answering the call for researchers with my skills base. Putting both myself and my son at higher risk of infection would not be sensible, nor would it be helpful.

So, I am instead having to content myself with knowing that some of the best minds in the country are currently working as hard as they can to keep families like mine safe, to develop a safe and effective vaccine, and still others are working obscene length shifts as front-line NHS staff, pharmacists, ambulance drivers and so on. I want so much to be working with them, standing side by side with them through this crisis and doing what I am trained to do.

My principle role currently is as Sam’s Mum… to keep him fit and well, to manage his seizures and health so that he can stay out of hospital and stay safe. I am fortunate to have this time with him, so many friends are separated from their children currently due to the virus.

To those working to keep the country going, thank you.

We’re with you all in spirit, if not in person.

A Birthday To Remember

In the month of January, beginning February, I had set out to planning Oliver’s sixth birthday! Despite the disbelief that he was about to be six years old, I wanted to finally have a party where he could invite his friends from school.

Booking a really cool indoor play place, all we had to do was wait for the day!

Unfortunately, that is around the time this virus hit our country and essentially sending us into a spiral that ended up in state-wide lockdown. I had no idea that it would last long enough that I had to make the decision to cancel the booking and start formulating a new plan. But how does one plan a party on lockdown? Let alone for a soon to be six-year-old who doesn’t quite understand what is happening in the world….

I decided with the help of a few viral videos, to try and get a drive-by parade set up for him! I contacted the local police department, which is located directly behind our complex, and crossed my fingers for a reply. To my surprise, the Chief responded with as much excitement as I had hoped for. He told me to give him the date and time, and he would take care of the rest.

Little did I know, the length he would go for my little boy.

On April 11th, I set out with my little family of five on a scavenger hunt. Oliver had no idea what was in store, and honestly, neither did I. At around 11am our scavenger hunt led us to the back gate, right where we needed to be. With butterflies in his stomach, Oliver voiced how nervous he was for this “big surprise”. A few moments later, I could see the start of the parade coming our way!

It began with Law enforcement vehicles, which included ambulances and fire trucks new and old. The Chief has also reached out to a local JEEP club as well as Oliver’s school and ensured that whoever wanted to join the fun, could.

With over 50 cars in line, it sure was a sight to see. I believe there was not a dry eye in sight! The parade had even managed to bring out many of the fellow residences from the complex outside to see what was going on.

I could not, and can never express the amount of joy and gratefulness I have for this gesture done by the Hewitt PD. They honestly brought a day to my son, that he will never forget!

Restrictions aren’t so Disruptive for Our Autism Family

Being Autism Awareness Month and also being amongst a Covid-19 Worldwide Crisis I can’t help think of some similarities between the situation we find ourselves in with the lockdown and social distancing.  Its what most autism and special needs families are faced with every day.

I am not downplaying the seriousness of the reality of this situation and realise I am one of the privileged and lucky ones with a lovely house, financial security and healthy children.

My heart goes out to those who have lost their lives, their livelihoods and health. I understand there are many essential workers putting themselves at risk to support us and I am in fact grateful I can be in isolation to keep myself and my family safe.

With all of that aside we are not finding the restrictions placed on us as disruptive as others and it’s not all doom and gloom. Autism has already restricted us and many other families in many ways and will long after this crisis has passed.

Social distancing

A lot of people are having to adjust to staying at home and change how they live their lives. This happened a long time ago for us with having a daughter with autism.

We have limits on what we can do as a family. We avoid large gatherings and events where she will become overly anxious due to the noise and number of people. Or we tend to stay away from situations where big and inappropriate reactions and noisy stimming are often not welcomed.

Visiting friends is sometimes difficult. Like taking an inquisitive toddler to a house without any child proofing making it difficult to relax and socialise.

Isla prefers to stay at home the majority of the time as this is her safe haven. This is often easier for us and has become our new norm. As a result this has actually made us closer as a family and we prioritise outings and supporting our other children with the help of carers for Isla.

Isla excels at social distancing. Although she misses school and activities she thinks all her Christmases have come at once!

Being adaptive

Having a child with autism means we are always looking for different ways of living life. We tend to focus on life skills rather than academics. Celebrating the small wins and letting go of the comparisons. Concentrating on what works for us even if outside the social norm.

During these times families are having to be really creative to find out what works best for their families. They may find with life slowing down they have more opportunities to teach life skills such as folding their clothes, cleaning or baking. They may realise these skills are equally as important as the academic ones.

Having a more holistic approach is certainly the case for us. We are extremely fortunate to be within the special education model where this is provided for us every day at school. Also through extra-curricular school activities and holiday programmes.

Other families end up with no choice but to home school their children. They do not fit within the school system set up for neurotypical students or within special education as they do not meet the criteria. They are unable to return to work or have any time to themselves at all. This requires a huge amount of adaption, resilience and is very isolating…all of the time.

Future unknown

For most average people in lockdown the factor driving anxiety is uncertainty and lack of control.

For anyone that has a life changing event in their lives can appreciate this all too well. This includes parents who have had a child diagnosed with a life altering disability. We have had to learn to take one day at a time and not look too far ahead as is too stressful and brings anxiety.

Focusing on the worst case scenario is not a healthy thing to do as I have found out. For me being well informed and putting a plan in place is something constructive I can do to alleviate my anxiety.  Also finding things you can control such as helping a friend in need rather than concentrating on your own problems can make you both feel better.