Prior to the coronavirus pandemic; I considered myself both blessed and grateful for the support we got. The support we get through respite, school, and family. I don’t need to tell you how hard it is being the parent to a child who is medically complex; chances are, if you’re reading this, you already know too well!

We have now kept Amy-Rose home for 25 days.

For almost every single one of those days she has cried and screamed for up to 10 hours a day. There are only so many times we can do the same things with her, she is fed up with her toys, and I can’t believe I’m saying it – she’s even fed up with Youtube! I never thought I would see the day where I couldn’t snatch 10 minutes of peace to myself with a coffee whilst she watches her videos.

I imagine that those with “able bodied” or “neuro typical” children are also feeling the strain, this situation is unprecedented and I don’t mean to undermine anyone’s situation at all in my ramblings but I am tired. Bone tired. The tired that sleep can’t fix. My back hurts from lifting and repositioning, my head hurts from the constant noise, my hands hurt from all of the fiddling about with syringes and feeds, my skin stings from the extra washing of hands, clothes and surfaces.

I save so many jobs for when Amy isn’t there. When she is there, she requires you 100%. You can’t go away to do other jobs, you can’t sit and read. I have had to keep leaving the room to breathe for 5 minutes just to escape the crying. It brings on a lot of complex emotions for me. I am feeling hopeless that I can’t soothe her. Upset that she hasn’t the cognition yet to understand why we can’t go out. Frustrated that I can’t get a moment to myself. Annoyed that I am having to stay up a lot later to make sure everything is done that needs to be done.

When Amy goes to respite or school there will be many meds being given, many feed changes, many outfit and pad changes. Between her dad and I we are now doing ALL of those things in addition to everything else we already did. I usually run on empty and plod on, but I know when my next break is. Not knowing when we can ever have respite again is really a struggle for us right now.

I was comforted today by reading a post on a cerebral palsy forum I am on. It was a dad seeking advice to try and help his distressed daughter. His daughter has the same diagnosis as Amy and is also having days of prolonged distress. It was bittersweet. I was pleased that others out there share our struggles, but then it also pained me to think that others are having to go through this turmoil.

It isn’t Amy’s fault, and I feel very guilty for complaining… but her struggles are my struggles.

Everyday I try to incorporate her daily physio (standing frame and a lot of things are done by school now), I try to do things that don’t involve YouTube or noisy toys, I try to keep on top of her pain levels and various medical needs. It’s like juggling but people keep throwing in an extra ball. Sooner or later the balls will all fall to the ground… but right now I will need to pick those balls back up and carry on as normal. This is something I’ve never really had to do.

Usually if it all gets too much, I load Amy into the car and we wander round the park or the shops. Or, we ride the storm, knowing that tomorrow might be a better day and that she will be going to school or respite and can be part of a structured routine involving lots of different people.

Yesterday when she became extremely distressed; we had no choice but to put her in her bed for a while so that she could calm down. When she’s angry she can become quite aggressive. I have lost count of how many times I’ve been hit, kicked, pinched and slapped. It’s heart-breaking. I just want to help. To know what’s up and how I can make it better. It makes me feel like a bad parent, like I should know what she wants and be able to fix the problem. After 20 minutes of screaming and kicking at her bed doors, she was quiet for a while. By the time we got her out she had somehow regulated her mood or become too tired to scream more.

We enjoyed almost half an hour together before she returned to screaming.

I have tried crafts, instruments, messy play, baking, you name it we have tried it. Yesterday she became very upset in her standing frame after only 15 minutes and I was so frustrated as it had been such an effort to get her into it in the first place. I have to keep reminding myself that it isn’t ME struggling, it is HER struggling. I feel a huge empathy for her and can’t even imagine how it must feel to essentially be trapped by your own body. She wants to articulate something and can’t. So gets angry and frustrated with us, which makes us angry and frustrated, and the whole cycle continues. Often when she is this angry, we aren’t able to reason with her or try to talk to her. You just have to remain calm whilst internally you’re crying and feeling panicked and helpless.

I ordered some second-hand toys for her the other day. I can’t wait for them to arrive, I’m just not sure what else to do! Hopefully they can provide even a few minutes a day distraction and pleasure for her.

I still can’t believe there are at least another 9 weeks to go before we can potentially (not even definitely) end Amy’s 12-week isolation. I am hoping that by then Amy had adjusted to this rather limited way of living and that she can find some peace.

It’s at this juncture that I’d like to thank each, and every person involved in Amy’s care, from every aspect of her life.

School teachers, TAs, nurses, carers, speech and language therapists, occupational therapists, physiotherapists, dieticians, doctors, everyone. There are more people involved than I can even remember. There are people behind the scenes, secretaries, admin assistants, all sorts, all vital parts of our life that I will never ever take for granted. Being home alone with her shows just how much input is needed from so many different people to make sure that Amy progresses, learns, develops, and maintains everything she has already worked so hard to achieve.

I also wish to thank all friends and family who are keeping in touch. On Thursday last week I got with the times and joined in on the Zoom trend. I attended a coffee morning hosted by Reuben’s Retreat (they’re an amazing charity that helps families like ours in so many ways – feel free to check them out!) It was so great to see familiar faces and even just listen to what others have been up to. (Added bonus for me – I won the quiz! Being an Alice in Wonderland geek finally paid off). I am missing my parents sorely, and everyone else in the family.

I think as a parent of a medically complex child, you already spend a lot of time thinking about illness and preventing hospital admissions. It’s strange to see so many people suddenly feeling similarly to how we feel almost all of the time. I’ve really had to step up my game in remembering meds times, inhalers, listening to breathing, watching out for increased seizures and stoma site issues. I am more determined than ever to make sure I am doing everything within my power to stay away from hospital during this time. I was already hypervigilant and I know that trying this hard to be on the ball is putting a lot of pressure on myself.

It’s a hard thing to grapple with daily – trying to care the right amount, to not drain yourself from anxiety and worry.

I wonder if life will be different after the coronavirus will be so different. I am already a reflective and grateful person; I know I love a good rant about how hard things can be, but I do go to bed every night so thankful for our situation. Things could be so much harder. There are people out there right now fighting for their lives thanks to this virus. There are key workers putting themselves in danger to keep the country afloat; they are scared, they have no choice, and they deserve all of our gratitude and respect. I already love my hand hygiene and antibac sprays. I already love being home. My main thing I miss right now is coffee shops and going out and seeing the blossom trees. Spring is such an amazing time of year; I know that I will appreciate our seasons and the outdoors so much more after this.

I’d love to hear how everyone else is getting on. If anyone has any tips? Have you found out anything new about yourself or your child? Yesterday I hoisted Amy the first time in a very long time – just for something to do!! She enjoyed swinging and spinning around for a few minutes before returning to her angry outbursts and wanting to do something else.

Good luck and stay safe.

It’s taken an awful long time to get to a place I can write this blog post. Even now I’m assuring myself that everything is OK and that these techniques are a good substitute.

You see my child, Ethan, cannot do a lot by himself if anything really. He doesn’t have the strength or muscles to hold himself in any position without equipment.

Ethan is now 9 and it’s taken me this long to realise that he doesn’t constantly need to be doing things or activities. He needs to have down time too and learn to explore the world around him in his own way. Having two other children means I can’t give Ethan constant activities and there needs to be times where he needs to explore on his own as well.

There is a huge guilt that when I use the activities I’m going to share with you that I should be doing more in those moments but in reality in the moments I’m ensuring Ethan has a cooked meal full of nutrients that he needs to stay well or I’m washing and drying his clothes, booking appointments, cleaning the floor so we can love his chair through or attending to my basic needs so that I can continue to care for him.

These activities provide Ethan with essential down time and skills he needs to acquire but through other means and not me.

Light show

We set up a light show with lights on the ceiling, fibre optics to touch or scarves and bells on his hands. We use flashing toys placed around the room to keep him focusing. This gives him the chance to track and fixate on lights and use touch to touch the lights.

I also play him classical music at the same time which is calming for the brain.

Audio stories

Audio stories are a great way for Ethan to practice listening and hearing to spoken language. This can be teamed with objects relating to the story either around him to fixate on or on his tray to touch.

Scarves

We tie scarves or material around Ethans hands. He is unable to hold anything for more than a few seconds, so this allows him to not drop the object. Scarves and material are different textures for touch awareness. Having things in his hands encourages him to move his arms around and follow his hands showing cause and effect. Tangle toys are also great for this or pipe cleaners which bend easily.

Feet

If Ethan is having a kick on the floor, I put toys near his feet. Anything that makes a noise when kicked is great. The bell chime about is great for this but any toys that can be activated by touch will work. Great for working on cause and effect even if the movements weren’t purposeful.

Mobiles

Hanging mobiles are great hanging from the ceiling hoist track if you have one or curtain pole. These can be bright and stimulating. Ethan loves to move his arms in amongst the mobile. We have a mobile with ribbons hanging all around it but you can use anything you have. Maybe even attach it onto a washing sock holder!

Those of us that are the parents of a child with additional needs, or who support a child with additional needs, so often put so much of our time, energy and focus (and rightly so) into helping that child or young person to thrive, to engage with the world, to develop as fully as possible, to be a part of all that we do… It can become all consuming, demanding much of our conscious and unconscious energy as we do all that we can to make a difference.

But for many of us, our child with additional needs or disability is not our only child.

We may have another child, or several others, all of whom need love, nurturing, care and support too. In our case, we have Phoebe, who at 20 is two-and-a-half years older than James and has grown up for most of her life in a home that includes a child with significant additional needs, and all that that brings.

Phoebe at various times is an extra carer for her brother, helping out with a range of support tasks that help to keep the wheels on our particular family bus. She is great at spotting when James is starting to get distressed about something and can either let us know or, usually, will just deal with things herself. She’s cleaned up stuff that she’d rather not see again (but probably will), she’s got up and come to help in the middle of the night if James is having a meltdown, she’s watched endless episodes of Postman Pat or Percy the Park Keeper with her brother, helping him to choose the next video to watch. She also great at calling us out when we’re letting James off lightly for something, he’s doing that is less to do with his Autism and more to do with being a 17-year-old who is pushing boundaries!

But she’s also missed out on a lot of things that many young people take for granted.

The times we’ve had to skip going to something, or come home early, because James is struggling… Going out as a family is that much harder when an unpredictable younger brother may do something that either means we have to abandon our plans or keep within a small set of activities that we know James can cope with. We can’t just decide to go out to the movies, or for a meal, on a whim as most families can!

We tend to invite people around to our house rather than visit, generally because it’s easier for James when he has the familiarity of his own den, his own things, and we’ve got everything we need to support him; whereas Phoebe might have liked to go somewhere different, anywhere different, for a change! Even family holidays can prove unpredictable, with a simple trip to the beach or to some gardens being fraught with uncertainty!

As parents, we were able to understand a little better at diagnosis what having a child with additional needs would mean (although in reality we still had everything to learn!) For Phoebe, who was five at the time, it just meant her brother was a bit different to the brothers and sisters of her friends. As she grew up she noticed the differences more, asked more questions, learned more about her brother, was affected more by living with him.

One of the ‘A’ levels that Phoebe took was Psychology, and this taught her even more about Autism in general and her brother in particular; for example about neurodiversity, the idea that neurological differences like autism are the result of normal, natural variations in the human genome, which is increasingly gaining prominence.

In all of this, Phoebe rarely complains (although she has her moments), she gets on with life and the challenges that being the sibling of a brother with additional needs brings. There are times when she mentions that all of our time and energy seems to be focused on James, and that she doesn’t get enough of our time and focus, and that’s something for us to do better at… to learn from and to change through.

But I’m so incredibly proud of Phoebe, for the well-rounded, caring, thoughtful, intelligent young woman she has grown up to be.

There are many thousands like her across the country, who quietly cope while their brother or sister is having a difficult day. Whether we parent more than one child, or whether as children’s and youth workers we care for them in other ways, let’s celebrate what a wonderful contribution they make to the world, how hard it can be for them sometimes, and make sure that we love, nurture and care for them, thanking them for all that they do.

When your child is given a diagnosis, it’s natural to want a crystal ball to see the future.

Sawyer was diagnosed with cerebral palsy as an infant after his brain injury. I asked so many questions of the doctors and they answered the best they could. What will this be like? Will he walk? How will this affect our lives? What does this mean for his future?

The truth is, no doctor has a crystal ball. They aren’t able to look into the future.

They can only make guesses on what they have seen in the past. They don’t know each child or how their brain will work. They don’t know the personalities of each child or their level of perseverance. One surgeon said he sees kids with Sawyer’s injuries in clinic walking and seemingly normal and other times he sees kids with less severe injuries that are in wheelchairs. He said his brain is complicated and he does not know how or why it works out that way since the brain is so complex.

I may have told you this before but when we told our nurse friend about his brain injury she simply said “It’s not a terminal diagnosis. A friend of mine has a child with Down’s Syndrome. He is a wonderful kid and he’s learning just like every other kid, but he is on his own timeline. You will get to see Sawyer accomplish things and be even more excited than you would a typical child.” This was so comforting to hear and rings true today.

Yesterday, Sawyer learned how to ride his trike on the same day his sister learned how to ride her bike.

I would have NEVER guessed a year ago that he would be pushing himself and pedaling down the driveway next to his sister. He does have to work much harder at this than his sister, but he does it with a smile. The twins were riding bikes together. Even now, I am brought to tears.

It’s HARD having a child that isn’t typical.

It’s hard not to think “What if?”. I sometimes see boys his age running around, and I often wonder what he would be like. Would he be running and doing boy things, or would he be the exact same personality he is just mobile? It’s hard to picture Sawyer any other way than he is. He is hard working, smart, funny and so chill.

Even though Sawyer isn’t what we pictured when we were told we were pregnant with boy/girl twins he is exactly how he should be. He is our miracle and we have a unique opportunity to watch tiny miracles each day. I am thankful I can’t see the future; each accomplishment is a celebration.

Everybody looks forward to that moment they get to see their child’s eyes light up on Christmas morning, or getting up early to see what the Easter Bunny put in their basket. But what happens when you don’t get that feedback?

 

Gift giving has always been my love language, so having a child completely indifferent to the experience is something I definitely struggle with.

 

I’ve always prided myself in finding just the right gift, but with my own daughter I feel myself coming up empty in the idea department. 

 

It has always been difficult finding things that piques her interest, and even when it does it is generally short lived. It’s not to say she does not enjoy material things. She loves cuddling her squeaky stuffed moose, and like many toddlers she can’t get enough of her tablet. But, beyond that she could pretty much take it or leave it. I will say it does make stumbling on something she does like that much sweeter.

 

As time passes, I’m starting to figure out methods of blending my over the top love of gift giving during the holidays, and providing things that are fun and functional for her. A lot of the pomp and circumstance were more so me being self-indulgent than anything she ever desired.

I’ve learned to create sensory experiences for her, but still in the themes of the holidays for me.

 

She loves textures, music, and lights. There is so much to work with during the holidays that are a feast to the senses that I was overlooking. I was so worried about the present I forgot that she’d be much more excited about the paper it came in.

 

There is a beauty in having a child that does not need the materialistic things to feel satisfied. She would take tinsel and slime over a pricy toy any day of the week. I was so busy trying to mould her into a child that craved the typical experience, that I was missing out on a child who was completely appreciative of the beauty of the little things in life.

You wouldn’t think that having someone chat to your daughter would be a big deal would you? I mean, people talk to kids all the time, don’t they?

Not so long ago we had two experiences in the same day that were poles apart. Heidi (non-verbal, non-mobile) wasn’t very well – we know what’s usual for her (chest infections are always a risk, with high heart rate and a spike in temperature), and luckily have open access to the local Children’s Unit. When she appeared to have something other than the norm going on, I rang up to see if we could take her in, but unfortunately, they were full, so suggested we went to A&E instead to be seen.

We were quickly assessed, which was reassuring, but then things seemed to move at a different, slightly alarming pace. Doctors came in, said they needed to take bloods, and I knew then that they would be in for a struggle – Heidi is notoriously bad to get blood from, those sneaky veins just go in to hiding! A different doctor and nurse appeared, and I started to feel concerned. This wasn’t our usual visit, and I was out of my comfort zone.

Heidi was getting more and more distressed, and I could no longer hold back the tears.

I asked them to stop – I had gone in thinking we would take some samples from her trachi and get some antibiotics, and here was Heidi in an absolute mess as a little human pin cushion. The doctor looked completely shocked as I asked him again to stop. I asked him what was going on, and if he could give Heidi a break. He took a step back, and then asked me what her name was. I was stunned; that was when my tears really started.

To be fair to him, he then explained that the first doctor had raised concerns that she was showing symptoms of sepsis, and as they didn’t know Heidi like the paediatric team do, I can understand why they took that approach. What really hit me though, and only as I looked back at the whole event, was that no-one actually spoke to Heidi. I get that A&E isn’t a place for pleasantries or longwinded conversations, but there wasn’t a quick “Hi Heidi, I’m Doctor….” or “ok Heidi, I just need to do x, y and z…”. I was talking to Heidi and trying to reassure her throughout, but it really upset me when I thought how scared she must have been and how I should have been the one to stand up for her. Imagine lying there not being able to say anything, or wriggle out of the way, it would be terrifying for anyone, even more so for a poorly kiddie.

So I made a promise – that I would never sit back again and wonder what was going on, I would never let anyone come in to contact with Heidi without them introducing themselves to her, and I would always ensure that Heidi was fully informed as to any procedures that needed to take place.

I was emotional and tired (like so many other SN mums and dads), but later that day my faith was restored.

We needed to be transferred to another hospital – thankfully nothing as serious as sepsis but they wanted her to be checked out by the gastro team (it turns out that she actually just had a lot of gas….but that’s a whole other comical blog!). We were told that we’d be travelling by ambulance, and to start getting our things together. Like so many others, we can’t travel light, so as I was frantically grabbing catheters, nappies, blankets and all sorts, two lovely chaps appeared and said hello to me and asked who we had here – yay! They then went over to Heidi, told her their names (I’m gutted that I can’t remember, memory like a goldfish!) and explained that we were just going to go on a little trip, and that they would “get her comfy while mum just packs your things”. They then told me not to rush, and gently moved Heidi, telling her what they were doing.

All the way to the ambulance they were chatting and as they set her up to the sats monitor in the back of the van they still told her everything that was going on and why. They asked me if I thought Heidi was comfortable and I’m sure they must have wondered why, yet again, I was crying! I told them that it was emotional, I was tired, and they were just being so lovely.

By the time we got to the next hospital I had managed to stop the waterworks and we were having a bit of a laugh about trivial things. They handed us over to the waiting consultant and said bye to Heidi and that they hoped she was better soon.

These guys got it spot on.

They didn’t stop doing their job, they didn’t slow down any part of the process, but they talked to Heidi the whole time, even though she couldn’t talk back.

If anyone reads this from a healthcare profession, or in fact anyone who comes in to contact with a non-verbal person, please please please just talk to them, like you would anyone else. Yes, it might feel a bit odd if you don’t get a response, but imagine if that person can understand everything of the world around them and you said nothing, they wouldn’t want to be left out, would they?

Thank you to those who have been so lovely – you may never know just how big an impact you have on someone.

This might seem like a very odd question to ask in the middle of the worst pandemic to engulf the human population for 100 years, but just like the Spanish Flu pandemic and all other pandemics, plagues and pestilences since the dawn of time, eventually there will be a post COVID-19 world to live in. But what might it be like? In what ways will it be different? In what ways might it even be better? And what has any of this to do with a blog about supporting children and young people with additional needs or disabilities and their families? Well, there could possibly be quite a bit!

Community Care

We’ve all become much more aware of our neighbours! Many of us live in communities where over the last few weeks we’ve got to know the people we’ve been living amongst, sometimes for years, much better. We’ve been shopping for each other, standing in the street and clapping the NHS and care workers (see later) together, communicating via window signs with each other, being better neighbours to each other.

Will all of this newfound neighbourliness just evaporate once we get back to the ‘new normal’ again? I hope not. I have a feeling that part of the reason we’ve kept ourselves to ourselves in the past has been down to a great big dollop of British reserve. Well that’s been dealt a hefty blow by Coronavirus and maybe that one of the positives of all of this. If we can emerge from it all caring more about those living around us, knowing who they are, checking in on them more, especially those families we know that have children with additional needs for example, learning to be friends as well as neighbours, then we might all find ourselves living in a better world that the one we lived in a few short weeks ago.

Respect for carers

While most of us have had a great deal of respect for those that work in the National Health Service, I think it’s fair to say that many of us have taken them for granted a bit. As a nation we’ve not always dug deep enough to equip them for the work they do, or thanked them sufficiently for their amazing dedication to keeping us all healthy. People in the wider care sector have typically been underappreciated, under-valued and under-paid, often on minimum or the laughingly titled ‘living’ wage while caring for the most vulnerable of our community.

The work these amazing heroes do has come into sharp focus over these last few weeks, and has rightly raised many questions about how we value people, what we value them for, how we equip and reward them. It is hard to imagine a society that has been stood on their doorsteps cheering and clapping, that has placed candles and pictures of support in their windows, will suddenly turn their backs on this most deserving of sectors once Coronavirus is under control. I hope that we all remember who the real ‘key workers’ are in our society and continue to thank them for all that they do, including those who work to support families with children with additional needs.

Online social access

It has been impossible not to notice the explosion in online activity over recent weeks, with many people learning how to use Zoom, Facebook Live, YouTube and more. It’s been great to connect with other colleagues who are working from home, to hold team gatherings online and to attend online church services. Lots of friends and colleagues have been learning to create video content and post it online, and are blogging, vlogging and sharing in loads of interesting ways.

While this has been a necessary way of working for us all during this current crisis, it has been of enormous benefit to many who even prior to this were ‘socially isolated’ due to disability, illness, age, family circumstances such as having a child with additional needs, or a combination of several of these factors. For the most marginalised in our society, the online world has opened up new and exciting opportunities to take part that simply weren’t there before. I hope that once we are all able to move around freely, to go to places that have been closed and to meet up again, we won’t stop using the online skills that we’ve all acquired and will keep thinking about how to include everyone, especially the most marginalised.

Being better people

The last few weeks have stripped away much of what we took for granted, changed forever who we are and how we live. We always believed that we could just pop out to a huge choice of 24-hour shops whenever we needed something. We lived an on-demand life. That changed when we found that almost overnight the things we relied on most were not there any more. The shops were bare, the fear was real, we have had to get used to enormous change in a matter of days, we didn’t always respond to this change well.

I hope that this sharp lesson in reality has changed us for the better. That next time we think about criticising and turning away refugees from war-torn or famine-stricken countries trying to find safety and a fresh start for their children in our country, we will remember that we fought over toilet rolls, that we stockpiled vast amounts of pasta, that we stole hand-sanitizer and face masks from hospitals. This crisis has brought out the very best in many, and the very worst in some. I hope that on the whole we will be better people for this experience, less selfish, less materialistic, less consumerist, more humane.

Like us all, I look forward to the Coronavirus crisis being over, to us all emerging from lockdown, blinking, into the sunlight of a new more hopeful day. I look forward to us not having daily death and infection figures to endure, but to us having a cure, a vaccine, a way to prevent this from coming back. I look forward to us learning the lessons of this crisis and perhaps becoming a more generous, people focused world. And in that fairer world I hope that families with children with additional needs will be treated equally, will be able to seize new opportunities to engage and participate in ways that were not there before, will be valued and included, cared for and respected. In this month where we celebrate that great campaigner for civil liberties, Dr. Martin Luther King, you might also say “I have a dream…”

Peace,

Mark

Saturday 4th April marks HIE Awareness Day. It’s only the second year there has been a day dedicated to raising awareness for HIE. If that doesn’t tell you that this condition is scarcely known about, then nothing will.

HIE is devastating. Thoroughly devastating.

Even that is putting it mildly. Chances are, if you or somebody you know hasn’t been affected by Hypoxic Ischemic Encephalopathy, you’ve never even heard of it.

HIE usually affects babies shortly before, during or just after birth but some cases of HIE can occur later into childhood as a result of a near SIDS event, near drowning or cardiac arrest. HIE shortly before, during or after birth can be caused by uterine rupture, shoulder dystocia, placental abruption or as in our case sometimes there is no known reason.

It’s hard to imagine that you can go right the way through a pregnancy carrying a perfectly healthy baby for it all to be so cruelly snatched away just before you cross the finishing line. But it’s true, it’s very real, it happens. 

HIE sneaks up on unsuspecting families. It rips away any idea of normality. It replaces the expectations with fear, anguish and heartache. It takes away your perfectly healthy child and replaces them with a great big question mark. It sometimes leaves families wondering whether their child will survive the initial insult.

If they do survive it’ll leave them wondering how severely affected their child will be following their injury. They will have an MRI scan. That may tell them there’s no evidence of any damage. It may tell them their injury is utterly catastrophic. Or it could tell them anything in between.

But then the doctor tells you that the results of the MRI scan mean nothing. Nothing and nobody can predict how the future will be. Nobody can assure you that your child will be okay. The child with a slight mark on their MRI scan may be severely affected, not able to walk or talk. The child with damage in all areas of their brain may be completely and entirely unaffected. 

“Wait and see”

Some families are sent home with NG tubes. Learning how to take an aspirate and check the tube hasn’t moved into the lungs. Some families are sent home with suction machines to manage their children’s secretions. Some families are sent home with a tracheostomy, some with home oxygen, many with medication to keep their child well. Some babies don’t cry, some never stop crying. Some children have seizures. Some are stiff. Some are floppy. Some can’t see. Some can’t hear.

The first year is the most torturous. You watch and wait for seizures. You put your child through endless therapies in the hope that it will equip them with the tools they’ll need to meet those milestones and to give them the best possible chance at some sort of normality.

For some it will work, for some it won’t.

Some children sadly don’t survive that first year. Many do but by the time that first year has passed, the extent of their injury has usually become apparent. That’s not to say if your child seems completely unaffected that they’re out of the woods. Some children don’t show any issues until much later into childhood. 

Some children will receive further diagnoses as a result of their injury as time goes on. Cerebral Palsy, Epilepsy, Sensory Processing Disorder, Dystonia to name but a few.

By the end of that first year though, for many something has begun to change. Many families have started to process and accept what has happened to them and their children. They’ve learned how to advocate for children in the best possible way. They’ve learned that whilst this life is indeed challenging and difficult, it is also rewarding and incredibly beautiful.

The child that has been labelled with a severe brain injury and not expected to achieve much may have started to hit milestones. They may be late but that doesn’t matter. These kids are full of surprises. Some of them stare death in the face and bounce back within weeks, shocking everybody along the way. The child that can’t see may start fixing and following. The child that can’t hear may startle at a loud bang. 

The brain is incredibly malleable. Neuroplasticity occurs from the offset. The brain forms new pathways around the damage and as time goes on, some children will defy the odds stacked heavily at their door. Nobody fully understands the brain and how it works, it’s a truly remarkable organ. 

One of the most incredible parts of this journey is the community that you are surrounded by.

Whilst there may not be millions of people affected by HIE, those that are love hard, care greatly and have a real passion to support families just like theirs. There’s no reason to feel isolated or alone on this difficult and usually unexpected journey. There is a whole world of support out there, an entire army of people who have been there, who have lived it and have a huge wealth of knowledge that is incomparable.

They’ve been in that place of complete hopelessness. They’ve faced fear head on and they’ve wondered how they will ever get through. They’ve lived through uncertainty, intense worry and pain as they’ve watched their child struggle.

So, on Saturday 4th April, give a thought to those families who are living this devastating, challenging and at times frustrating life. Don’t pity them, for their children are equally as amazing as the next in their very own right. Just keep them in your thoughts and if you ever find yourself meeting a family who have been directly affected by HIE, be kind to them.

They may look like they have it together entirely but looks can be deceiving. We’re winging it day by day, some days are better than others, some days it takes all our energy to drag ourselves out of bed.

HIE is hard work.

But one thing I’ve learnt is that these kids are truly amazing, they are the most resilient little warriors who do not let their struggles define them.

Autism Awareness Month—the time of the year when the globe seems to explode with multi-colored awareness ribbons and puzzle pieces.

Social media is overtaken by waves of proclamations of support of autistic individuals and their unique journeys.

For those of us who live in the world of autism day in and day out, the month of April can be a time of feeling a bit less alone and a tad more seen. But then the month ends. Slowly but surely, the puzzle pieces and ribbons fade into the background and the next headline-snatching cause sprints into the spotlight.

For many, life returns to normal as if Autism Awareness Month never happened. Unfortunately, that is exactly the case for families who are touched by autism. We go to the grocery store and face the judgmental comments and glares of strangers who cannot (who perhaps do not care to) understand how overstimulating the supermarket is for my daughter. I dare say these judgements are fired by some of the same individuals who stuck an autism awareness ribbon to their social media profile picture only weeks prior.

We attend triggering gatherings where we stand out like sore thumbs and hope we can somehow stay just long enough to check the box and not appear rude. We advocate like grizzly bears against the therapists and professionals whose tunnel visions see “normal” as the only definition of success. We slip into the background where we keep both our battles and our victories hidden from those who choose to remain focused on a label instead of a precious, unique, incredible human.

Yet, the world claims to be aware.

Actually, I believe the world is aware of autism. But as time marches on, I have begun to believe that greater awareness is actually the last thing we need. Does awareness alone actually change anything? While awareness is a wonderful place to begin, the problem is that the majority of the world goes no further. If we truly want to see the world become a place where all are welcome, we must take awareness as a simple first step that leads to acceptance.

You have the capacity to change the climate that individuals with autism and their families experience in society. Once we truly accept those who are different from ourselves–completely separate from our own expectations, norms, and comfort zones—only then can we be a unifying force in a divided human race.

Awareness leads to acceptance and acceptance leads to advocacy.

As humans, we are all created to advocate for those around us—advocate for equality, for unconditional love and acceptance, and advocate for permission to be different. So this year as you see the wave of autism awareness wash over the world, make a point to not allow that wave to stop there. May true awareness, acceptance, and advocacy begin with you this year and be made evident in the way you lavish grace, compassion, and celebration on every human soul.