PTSD in Parent Carers – Our First PICU Stay

Parent carers are under-represented. Particularly parent carers of medically complex and/or poorly children. 

I still grapple with the term “carer” because your child is your child, and you do what you need to do in order to maximise their health and ensure they lead an enriched life. However, one must recognise that parent carers often go way beyond the call of duty that is usually required of a parent and thus the carer element has to be factored in.

PTSD is rife in our community, there is no denying it. So often PTSD is spoken about in relation to war, or survival from a traumatic accident. But PTSD can arise from many different scenarios and can manifest itself in many different ways.

I have encountered things over the last month that will stay with me to my grave. Images engraved and embedded into the very depths of my soul. 

I wanted to share with you all our most recent experience in hospital. PICU.

Medically complex as Amy is, we have managed, until recently, to not require the HDU (High Dependency Unit) or the PICU (Paediatric Intensive Care).

Many readers may already be familiar with our journey but to fill you in – Amy has cerebral palsy and epilepsy induced by hypoxia at birth. She is prone to regular chest infections and has several admissions to hospital per year due to her lungs.

November 27th, 2022. We are called to pick Amy up from respite as she is inexplicably “not herself”. I arrive hoping it will be a quick visit to our local hospital. A course of oral antibiotics, hey maybe we will even avoid needing to stay in! Maybe she won’t need oxygen. We’ll manage this one from home, we don’t want to be in hospital over Christmas thank you very much! 

We arrive at respite to a lethargic, unresponsive, floppy Amy. We get to hospital. Oxygen needed immediately. We aren’t going home today.

Fast forward a few days – we are seeing no improvement.

Surely by now the antibiotics should be doing their thing? After a few days we agree to change antibiotics. We have no swab results yet so we are treating this blindly right now with broad spectrum antibiotics. 

I wake up one morning and Amy is highly distressed. Like never before. Something isn’t right.

I notice her gastric drainage bag is full of blood. Coffee ground bloods. Loads of it. I panic, telling myself this is maybe just gastric irritation, I’m sure it’s fine. I know in my gut she is not fine. But I need to stay positive.

Things take a turn for the worst and we are promptly moved onto HDU. I am grateful for the extra medical support. I am grateful of the company. But I am terrified.

I’m like a duck swimming. On the surface all is calm and collected. Beneath the surface I am scrambling, frantically pedalling and kicking. My head is booming, I feel sick to my stomach. Please get better soon.

From hereon I kid you not, I witnessed at least 20 cannulas.

They go stiff, they break and fail, they get knocked out. There would be days I would plead “do we really need another cannula? We can’t keep doing this. It isn’t fair.”

Initially Amy would fight it and try to stop the cannulas going in. As the days went by I saw the fights get weaker and less frequent. She became despondent.

She had accepted this new life of “torture”. A constant onslaught of needles, tubes, wires, chest physio, suction, nebs. It was physically and mentally exhausting. With each new tube and wire added I could see less and less of my little girl. 

It didn’t stop there. Things got worse. She started to have episodes of bronchospasms. Which I had never even heard of prior to this. It was utterly terrifying.

You know those moments when the room suddenly fills with doctors and nurses and you are sort of shuffled to the side to let them do their work? “Are you okay there mum?”, “I’m scared. I’m so scared” I whimper through tears. But this moment wasn’t about us. It was about Amy.

We watched as adrenaline and goodness knows what was administered. What on earth was happening? Are we losing her? What does it mean?

Phil and I had noted a big change in Amy.

The seizures had ramped up, she was on the absolute full whack airvo (humidified oxygen), her numbers weren’t improving, she was on her maybe 4th or 5th antibiotic. They started Amy on the “dettol of antibiotics” and IV meds to help open her airways. I was fully out of my element. Every term and medication I heard mentioned, I kept a note of and researched in desperation to understand what was happening.

We pleaded with doctors to send us to the city hospital. Our local hospital is fantastic. But we had outgrown what they were able to provide. She was on the maximum of everything, teetering precariously between life and death.

I had mentioned several times that Amy’s heart rate was low. Oh the hours I spent looking at those monitors just willing and hoping for those numbers to magically improve. As if my stare alone would make this all okay.

“She’s just exhausted mum” I was told several times. They were right – she was exhausted. But as parents we have that gut instinct. We just know. I have a huge respect for doctors, but there is also a huge respect that needs to be given to parents that have that personal insight and intuition 

The heart rate drops further.

I call for the doctor. She agrees yes, we need a controlled intubation and a central line. This means city hospital. Hospitals in December often operate at full capacity. This wasn’t going to be easy.

She gave Amy a check over and as she listened to her heart; it dropped further.

“She’s going into cardiac arrest. Time for plan B”. I will always remember those words.

Immediately I was transported to her birth 9 years ago. She had been born with no heart rate, causing a huge brain injury.

Fast forward a few hours… a lot of pacing silently, a lot of sitting feeling sick, a lot of staring emptily into the void at generic artwork on hospital walls in a waiting room. The doctor enters. “She is ventilated, intubated, and stable, do you want to come and see her?”

We entered the theater. Anaesthetists and surgeons look at us with kind eyes and explain what’s happening. “Do you have any questions?” they asked. “No” I choked out. “I just think you’re all amazing. Thank you so much.”

Eventually we are transferred to the city hospital.

I am bundled once again into a waiting room whilst they handover and insert a chest drain.

I come to learn that Amy’s lung is “consolidated”, “pleural effusion”, “a total whiteout”, “collapsed”, “filled with fluid.” “A tear in the lung tissue.”

The wait in those rooms feels like an eternity. 

I go to see her. There are more tubes and wires than ever before. I am scared to touch her. It reminds me of her being a baby. I don’t want to disrupt the nurses who so expertly manage her needs.

In spite of being in an induced coma, Amy refused to sleep! She was given so many extra boluses of sedatives. It was so distressing to see as she dystonically tried to wake and pull her breathing tube out. Her skin was puffy with fluid retention. Her breathing so mechanical and frightening to watch. 

Every night was spent absolutely exhausted but unable to sleep. 

Day by day she started to recover

The chest drain had worked. In spite of not properly resting, she had rested enough to help her lungs heal.

Fast forward to now. Amy is fully recovered. She has finished a 4 week course of antibiotics. She is adjusting back to normality.

I look at her now, so full of life; and I can’t believe she was that same person I saw in PICU attached to all of those machines.

PICU never leaves you. You move on, and slowly day to day normality sets in and now your biggest problems are back to what they previously were – gastro issues, admin, appointments, meds, seizures, lack of sleep and so on. 

I have to stop every now and then and breathe and take stock. I honestly thought she was going to die.

We still don’t know what caused this particular episode. I live in fear that it will happen again. I have become hypervigilant, paranoid, scared, desperate. But I have also learnt so much.

Not just medically, but I have learned the power of instinct, I have learned that much more support is needed for families affected by PICU/HDU admissions and traumatic encounters.

I know that in the wider scheme of things we are so lucky.

There are people who are regulars at the PICU, or that have been there for a very long time.

We were home before Christmas. And whilst things were still quite turbulent and we did return to hospital a few times; I couldn’t help but think of the other families there we left behind. The things they were having to see and hear, the uncertainty, the blind panic, the exhaustion, the hopelessness, the loneliness.

Lost souls wandering the corridor, muscles aching to the core, hungry but unable to eat, feeling selfish for every nice thing you get to do such as drink a coffee when really your child is suffering.

We are resilient, strong, amazing. Us, our children, and those that work with us to keep them alive. A huge thank you to our NHS, to RMCH, to Stepping Hill, to Dr Stannard, to NWTs, to everyone involved in saving Amy’s life. A thanks to our incredible friends and family who rallied round us doing whatever they could to soften the blow of the whole ordeal.

Please, if you are suffering with PTSD, seek help.

Your doctor, relevant social media forums, friends and family. Help and support is out there. Share your experiences, find safe ways to try and heal.

Whilst I don’t think that light ever switches off; it can dim.

I have loved the work of Jo Griffin at Affinity Hub and also her book – there are some useful resources and information available on her site, and she is a fellow firefly blogger too. Can you believe in my research of PTSD in parent carers the main things that came up were all via Firefly and Joanne?

I wish you all good health.

The Best Advice While Raising a Child with Special Needs

I found one common theme in the beautiful 30-year journey I have had so far with my daughter, and that is that all the best advice I ever received, was from other parents who have children with special needs.

There are so many others who may try to help, and I believe their intent is well-meaning; however, without walking this path it is impossible for others to truly know the full scope of what we live. Not just the trials, battles, and wounds, but most importantly the triumphs, joys, amazing relationships, and unconditional love. 

It is my hope that this blog will help some of you new parents and caregivers just starting out on this journey. At the beginning of my journey, I would tend to lean on and live by the advice of doctors, teachers, friends, and relatives. While their advice was sometimes good, and helpful, I always felt something about it just didn’t feel complete.

Once my daughter started school, dance class, and Special Olympics, I met so many parents!

There were 5 of us that met weekly for coffee while our children were in dance class. At Special Olympics, there was much time for conversation while waiting and watching the games.

There is a different kind of connection that we have. It’s a natural understanding and compassion. There are a lot of areas for obtaining advice, and I suggest using all of them, I know I did. At the same time, I would seek out those who really knew what it was like to be in my shoes.

The best school teachers my daughter had were those who had their own children with special needs. All her teachers were great, I am grateful for all of them; however, there was just something different, and more at ease, with the teachers who were on the same journey.

There was a lot of advice that I received from other parents that I would have never known about if not for them.

This blog is not to talk about specific advice, because there is so much information and help we all need, but to let others know that other parents can be, and most often are, our best guides.

We can all use help to take care of our children with special needs. Some of us parents are single, and others have challenges that require help. I strongly suggest you get to know the other parents along this journey.

Some of them will stay and some will go, but all of them just might touch your heart and take some weight off your shoulders. Some of the other parents might become your best friends and confidants.

I understand what “It takes a tribe” means.

Life with our special needs children takes a tribe. God bless all of you wonderful parents and caregivers. I know this journey can be exhausting, but it can also be beautiful and heartwarming. The more help and guidance you have the more you can enjoy the heartwarming events.

Some of the simplest advice can make a major difference in our children’s lives. This photo is of my daughter with her weighted blanket. Another parent recommended and made this blanket. It made a big difference in her life when her moods elevated, or she just felt anxious.

When people say “I don’t know how you do it”

It’s a phrase that parents of disabled children hear frequently, along with “I think you’re amazing”, “What a wonderful family you are”, and words to that effect.

Despite being a regular recipient of such compliments, I still find I am at a loss to know how to react or what to say back.

I politely respond, “Thank you, but no I’m really not!”, when really I want to say “You’d do exactly the same if you were me”.  I find myself wanting to grill them on what they think I am doing that warrants such kudos. 

Fundamentally, what am I doing that is so amazing, other than bringing up a child that I love? I am doing everything in my ability to ensure he is safe, well, and cared for, which is the same as what every other parent I know is doing too, right?

I guess the difference is that I am having to put a whole heap of extra work into this journey, and the path is fraught with obstacles

Perhaps they see the exhaustion on my face, or witness me repeatedly declining invitations to social occasions.  It is nice to hear compliments from people that recognise and observe the struggles that I go through, but it frustrates and saddens me that maybe they are drawn to the obstacles I face and not the joy of the journey. 

And so here I am asking myself why I find it so difficult and awkward to be complimented on my parenting. I think this is partly down to the unrelenting, perpetual guilt that I experience, that makes me feel undeserving of any parenting plaudits. 

For me, the focus remains on all the things that I haven’t done as a primary carer; all the things that I should be doing more of; all the things that I feel I have failed at.  

It’s the time I spend alone with my other child because he needs me to show him I have the same amount of love for him too.  It’s the therapies or extra care that he misses out on because I’ve run out of time or energy.  It’s leaving him on his iPad for longer than I should so that I can get tasks and chores done.

It’s a daily battle with feelings of ‘I-could-do-better-for-him’, and ‘what-if-I’d-done-this-differently’. 

When someone praises me on how magnificent I am for what I am doing for my son, this also seems to unhelpfully focus my mind on the differences he has and the reality of the situation. It serves as a reminder that I have a seriously different life to other people, and it reminds me of the gravity of my situation and the severity of my child’s condition. 

I previously felt purposeful in my professional life, but I relinquished my career not long after my son was born.  I now need to feel I make a difference and serve a purpose elsewhere, and so by focusing on making a change and having a positive impact gives me this life narrative. 

For me, I have ended up in the spotlight, advocating for families like mine, representing parents who cannot represent themselves, and crafting new services to counter the existing under-provision.  This is not for everyone, and I do not seek praise for this; it is a personal and somewhat selfish act that helps me unravel my own demons. 

I am truly grateful for the accolades that are bestowed upon me, but please know, I am just another parent doing another difficult job, and yes, you would do exactly the same, and like me, you would do it through unconditional devotion and love.

Hospital stays

We’ve had multiple hospital admissions with our eight year old daughter, who was diagnosed with epilepsy at 18 months. She has a complex epilepsy that is very hard to treat. Some stays have been terrifying, some funny (I’ll explain) and some have now become almost run of the mill.

Our first stay was during her diagnosis. As our little room filled with people, we were terrified. She was confirmed to be having seizures. Tests were ordered for a wide range of conditions (I still don’t know what they all were) but we were soon facing the reality that life was unlikely to follow the path we imagined.   

Those stays would be the first of many for us

We arrived by ambulance for some subsequent ones, with prolonged seizures. Some stays were for investigations to see if she was a candidate for surgery, some were for the surgery itself (she has a Vagus Nerve Stimulator).

Other more recent ones have been for non-convulsive status epilepticus. Recently we were ambulanced to hospital with a prolonged seizure. By the time we got on to the high dependency unit, she’d had a quick sleep, leapt out of bed and was signing ‘home’. 

The nurse told me it was the first time she’d ever admitted someone on to the ward and then discharged them, all while covering someone else’s break (that was the funny one).

So, some tips for hospital stays. This is what works for me: 

1. Say thank you and be nice to people (it’s ok to get inwardly irritated by professionals though, they are humans, and I have done my fair share of private eye rolling when things have been said less than sensitively)

2. Get your support network in place, if you are lucky enough to have friends and / or family offering help, say yes. Tell them what you need (I normally go for food).

3. Don’t be afraid to ask the nurses questions; is there a playroom? is there somewhere I can make tea? Often the nurses are too busy to brief you in when you arrive.

4. Take in home comforts – your fave tea, chocolate, blanket, whatever makes you feel better. Headphones are good for podcasts if your child is sleeping a lot. 

5. Take comfy clothes – I go for leggings or joggers and often bring slippers to pad around in.    

Although our stays have been frightening at times, I have, for much of them, felt comforted. I will end by sharing one exceptional act of kindness that I experienced when we were in last week for four nights.

A nurse overheard me on the phone to my husband asking him to send in some 85% chocolate. Shortly after the call she appeared with two mini bars, 75% and 85% saying “I couldn’t catch if you wanted 75% or 85%”, offering them both to me. I could have cried. That chocolate tasted so good.

Dreaming of a Special Needs Library

Don’t you wish sometimes there was a Special Needs Library? And I’m not talking about one that just is filled with books, but a library of those going through what you are in a specific moment of time. Both a resource and support section for exactly what you needed in the moment.

There are so many faucets to special needs parenting. There’s a grief section; while they are alive and when a child has passed. There’s a joy of “inchstones” and small achievements that would be trivial to the outside world. There’s a ‘I am flat out confused over durable medical equipment’ section. A legal section for I have to fight a slew of denials. A section on learning how to be alone and without a 4am friend to call when your child just had their fifth seizure of the night and you are scared.

A place within the library with round tables, and chairs so welcoming and comforting that they felt like an instant hug. 

A place where you aren’t just pulling books off a shelf but sitting together in genuine support and comradeship. Maybe even sitting just in silence because the words are too hard to utter, but with an unspeakable understanding of one another.

Where at the same time you don’t have to be quiet and whisper and are allowed to let your soul echo the loudest battle cry and heartbreak. When cursing and screaming wasn’t taboo and expressing your pain didn’t have to be suppressed. When no judgment was passed for any of the emotional expressions you displayed.

A library that served free endless coffee because you are so tired that all the words in any book are blurred from the lack of sleep. Perhaps even a snack in the name of the ever preached but elusive “self-care.”

A library that says that’s my section and those are my people who are immersed in this aspect of special needs parenting with me.

Where you could bounce ideas off of each other completely without reservation of being attacked or wounded for your thoughts and feelings.

Where there’s no overdue book fees or fines for needing to cling to a resource for as long as you needed. Check out cards a thing of the past where we all operated on the when I get around to it honor system. Where no one would fault you if you were late, or had a prior commitment that was more pressing.

The librarians would be seasoned special needs parents now in their golden years full of understanding, compassion, kindness and endless empathy for young parents who just joined the journey. We could bathe in their knowledge, ask them which directions to go, and what to avoid.

Our safe place to research and ask questions of each other far away from the prying eyes of progress and providers.

Knowing that we’d put our heads together even if it took hours to find a solution. The place where it was just understood that mom’s and dad’s know their children best.

The library would be open 24 hours a day, so if you had a midnight crisis you could find the section you needed.  A librarian would meet you at the door to assure you could easily find your way. You would be greeted with tenderness and the librarian would offer to fetch you whatever you needed.

What section of the library would you head to first?  Where are you on the journey? What book do you most need to find?

Confessions of a medical mom

I’m going to be very honest in this post, kindly take this as both warning and disclaimer. I intend to admit to ignoring a lot of the things that parenting guides tell us we should, nay, must do. And for that matter, doing much of what is prohibited.

As a new mum with a medically complex baby I was terrified that I wasn’t up to the task ahead. Remember the Red Book given to new parents? The one that charts your babies progress through their vital developmental stages? Yeah. We chucked ours into a drawer and ignored it (best health visitor advice ever given that was – as soon as the Dude’s diagnosis came in, she told me to put it where I couldn’t see it).

We already knew he was fighting for his life, developmental stages were not the priority. I found it again during the week before Christmas…a decade after it was first consigned to that drawer it still has the power to hurt, so back in it went (under a pile of stuff that won’t be needed for YEARS).

Bedtime is another one of those subjects upon which parenting experts are agreed – early bedtime, routine are vital.

Erm, not in this household they ain’t. Seizures, multiple medications, regular bedding/clothes changes (especially in the early years before gastro/reflux issues were better managed) meant that bedtime was/is disrupted. To put it politely. Now, we go with what our boy needs – he has his own bedtime routine,  it may mean that some nights he isn’t in bed until 10pm but others he’s fast asleep by 7pm. We learnt long ago not to sweat it, if his seizure activity is high he needs more sleep. Other days, he doesn’t.

And on the subject of sleep… we have co-slept, stayed awake all night while he slept on a beanbag, slept in 3hr shifts while the other was on seizure-watch, slept on sofa beds, hospital chairs… for 3hrs we all slept in a dining room together as it was safer than us being upstairs and our boy being downstairs.

I have done the unthinkable and (brace yourselves) held my child while he fell asleep in my arms, when he was a baby I nursed him to sleep when he was fractious, when the seizures have distressed him to the point that he is inconsolable we have run a warm bath in the middle of the night and just let him relax as the warm water works its magic.

I wish that when my boy was first diagnosed I knew what I know now.

That it’s OK to do things your way. That medical kiddos have enough going on to care about following what the ‘experts’ say. Their parents do too. And it’s fine. At 11, the Dude is absolutely epic. And after a decade plus of this, I think I can safely say that we got this.

When school isn’t right for your child

From the day she started she said she hated it. I thought it was first day nerves. It was the big change. She’d get used to it soon and settle. 

A few months went by and she started to change. Mood swings, behaviour changes, tearfulness. I put it down to tiredness, hormones, missing her old friends. 

Then it started: Complaining of a sore tummy, headaches, refusing to get dressed, feeling sick. I spurred her on thinking I was doing the right thing. 

She’d come home telling me things that didn’t seem right.

I’d email and they’d promise to sort it. Then something else would happen and I’d email again. And again. And again. Emails became meetings. Still she was so unhappy. By now she was refusing to even go, making herself ill, crying all weekend. 

Maybe it wasn’t the right school for her?

The problem with having a child with additional needs though is that it’s not as simple as just choosing another school. I hadn’t even chosen her school to begin with! So much was out of my control and all other placements for those with additional needs were already taken with a long waiting list too. 

We tried to make it work, probably far longer than I should have, but in the end it was obvious that school wasn’t the right place for my autistic child. 

It only took a matter of weeks to get formal permission to remove her. Her placement was in demand and for another child it may well be exactly the right place for them. For my child though her mental health had to come first. 

School trauma is very real and much more common than many realise, especially for autistic young people like my daughter. Her story is far from unique because the school system is often so inflexible and limited.

Children are lumped together often based solely on diagnosis or location and places often decided by people who have never even met the child. For some children this works out well but for many others it continues to be a struggle and their mental health suffers as a result. 

School isn’t always the right setting for a child to learn.

We need better options to accommodate wide needs and to suit each individual child. It’s not about ‘pandering to a spoiled child’ as some seem to think, but responding to your child’s communication and truly listening to their needs. 

There was a time when school was very much the right setting for my child but things change and the transition to secondary was more than she could cope with. 

It’s not been easy to go against the grain and realise that school isn’t the right place for my child but it’s definitely been the best decision I have made. My child is very much still learning…it just happens in a different place now because that is what she needs. 

The one and only school photo she had from her time there should have told me that months ago. If only I had listened earlier. 

Autism in the teenage years

Lots of people told me it would get easier as my children got older. They wouldn’t be so needy or demanding and they would become increasingly independent. 

I am not sure if they grasped the ‘lifelong disability’ part of autism but having two autistic teenagers definitely hasn’t got any easier. In fact, I am probably caring for them more now than when they were younger! 

Raising autistic teenagers is completely different to raising neurotypical ones.

Independence isn’t guaranteed in any way and navigating hormones they don’t understand and communication difficulties with even more peers and professionals involved adds stress that is completely different to that of raising younger children. 

High school is such a different experience with my children being one of hundreds each teacher sees daily. Each day my children have to cope with so many transitions, demands, expectations, social pressure and time pressures with far less support to help them through. 

Then there’s the pressure to conform, to fit in, to grow up.

They may, like my daughter, mask all day then break down or meltdown at home as the pressure gets released. They may feel they have to hide what they genuinely enjoy for fear of being mocked by others.

The social skills that others take for granted might be extremely confusing and misleading making things awkward or upsetting on a daily basis. The realisation they are different and the struggle to accept that is so difficult to manage especially during the years of puberty and high hormones. 

Then there’s their changing bodies, the growth spurts and all that comes with puberty: hair, breasts, moustaches and periods. Explaining all this to children who hate change is a huge challenge and not for the faint hearted! Preparing them when you can’t say exactly when something will happen sends anxiety sky rocketing and causes so much frustration. 

It’s the years when social interaction becomes much more nuanced and complex too causing huge anxiety to my autistic teens who still think in black and white and take everything literally. ‘Are they laughing with me or at me?’ becomes a daily worry. ‘Are they really my friend or are they just using me?’ becomes a nightly question I struggle to help them answer. 

As my children have aged, the difference between them and their peers has widened greatly.

The autism is more exposed, open, and visible and they are more vulnerable than ever. The balance between trying to protect them whilst letting them experience the world to learn and grow gets trickier and harder by the day. 

I want them to be proud to be autistic, to embrace exactly who they are without fear but am I setting them up to be bullied and excluded by society or should I watch them struggle to mask and blend in so that they make it through high school without being a target? 

That was my struggle until my daughter had a complete breakdown and is now home schooled and my non speaking son was placed in the most complex class in his special school. 

Now they are free to be exactly who they are but they both still need me now more than ever. 

To all those parents raising autistic teens: I get it. You are not alone. Take each day at a time and remember this too shall pass!