My son Joey is 7 and has medicine resistant epilepsy which is controlled by a VNS (a pace maker for the brain) he has had a fundoplication to protect him from aspiration, is peg fed as he can’t swallow safely and is on anti-epilepsy medicines and movement disorder medications. He has cortical visual impairment and severe global development delay. Joey has an unknown condition that is life limited.

Up until last year Joey had overnight care and had a direct payments package – now despite his serious condition he has no support from social or from continuing care. His condition is still the same but the health board changed and despite having a life limited condition and medicine resistant epilepsy (he has been on over a dozen anti-epileptic medicines in his life has never walked, talked or being able to do anything for himself), care was wiped away, nothing not even one night a week.

I have shared care and have had many battles to have my son in my life – this is still one of them.

Juggling a full time job and then caring for Joey overnight when he is with me is incredibly tough and Joey also doesn’t have access to his disability living allowance when is with this side of the family either. I try to sleep next to him on a put up bed when he is with me and monitor his heart rate with a pulseguard which alerts me to seizure activity so I can be treating him as soon as I can. His condition is constantly changing and he is need of a respiratory study now to see why he is often gasping for breath at night.  As you can imagine my sleep is deprived massively so I function on little sleep as I have to be on high alert.

Joey nearly passed away twice early in his life and his condition was so bad great Ormond street said to palliative care him and he wouldn’t be with us very long. There was no cure, no magic formula, he was the unknown, no-one like him in the world and they just gave up on him. But his neurologist in South wales didn’t give up he said one last roll of the dice and he got sign off for the vagal nerve stimulator to be fitted.

That was when he was just 3 years old, he is now 7 he has started to babble, bash things and is a cheeky little chap. Unfortunately he can’t do anything for himself and requires 24/7 care. His seizures are mainly controlled by a VNS and despite having between 50-100 seizures a day – mainly ones you can’t see his quality of life has improved, he is so much more aware and interactive with the world…

Despite the challenges there are huge positives, a wonderful community, my friends, my wife (Joey’s step mum), my whole family, my workplace, my hospice dad mates they all love Joey and go the extra mile to make sure he doesn’t miss out, despite all the odds against him and the odds against shared care.

Dads just aren’t recognised in the system and separated dads have to fight every step of the way.

Joey gets no financial support from his disability living allowance so my friends and family fundraise to make sure he doesn’t miss out. It is important to reach out and share your feelings and gain support. I am part of a lads and dads mental health support group whom have supported raising money for Ty Hafan and are also just a message away from listening and supporting me when times are tough. What keeps me going is the smile on my son’s face when he sees me and the impact my son (against all odds) has on everyone who meets him. He is my hero.

Good people step up massively in your life, I have been in touch with people who I lost contact with from school because they want to help my son have the best life. Get support emotionally if you can, it took me awhile but it has helped me open up and try and deal with the situation. I still get down days but who wouldn’t.

I have had to grieve for what my son could have been but celebrate who he is, an amazing boy “Joey the superboy”. I keep a Facebook page where I capture memories for all of the family and support network because you just never know when the last memory could be. I love Joey with all my heart and whatever it takes I will make sure he has the best possible life.

At the age of 11 we have settled into our life with Isla and autism and all that it brings. Our days are full of love, laughter, compromise, cuddles mixed with a little frustration.

Love

Isla has so much love to give. She loves the people close to her with all her heart and she misses them when they are not around. I wouldn’t say she is empathetic but she is caring and she strives to be kind. She greets people on the street with a friendly hello even when it is not returned (this is often). When I’m stressed she tells me just to “breathe in and breathe out” and she will try and calm me with a shoulder rub.

Laughter

She cracks us up every day whether she is meaning to or not. Her unique observations of the world and the way she phrases things are hilarious. Sometimes we have to try and keep a straight face but she enjoys making us laugh and never gets offended. Isla is becoming very opinionated as she gets older and she is very clear about the way she wants things done. It’s not hard to appeal to Isla’s sense of humour. She has always been easy to make laugh and it still doesn’t take much. A good knock knock joke never goes amiss, and her speciality is telling jokes that don’t make sense. She will crack herself up laughing and you can’t help but laugh along.

Compromise

Or should I say bribery! This is an every day occurrence and one I’m glad is effective otherwise we would get nothing done. Get dressed and you can have the iPad. Have your breakfast and you can watch the TV. Go for a walk and you can have the Nintendo Switch. You see a common theme here? Yes Isla still loves anything with a screen. Highly motivating but also highly addictive. There is a fine line here.

Cuddles

Isla will come into our bed in the morning, put her legs in between mine, suck her finger and often go back to sleep. She is very affectionate and there is no sign of this wearing off just yet. Even though she is getting a lot bigger she is still very much my baby girl.

Frustration

This is caused by the destructive nature of Isla when not preoccupied with something constructive. She has real trouble staying on task and gets very easily distracted. Pens, sunglasses, earphones and light fittings are not safe when Isla is around and will end up broken and discarded. She is hardly aware of when she is fiddling and breaking things. Self-care is still also a painfully slow process. It is so easy to underestimate how difficult it is to practice the most basic self-care tasks. Let’s just say this still can be a rather messy affair. Isla also has some other undesirable habits such as burping that we cannot seem to change no matter what course of action we take.

Adaption

Isla’s behaviour is manageable most of the time. If we push things too far or go out without the appropriate toolkit then it can be a recipe for disaster. We know her limitations and we know ours. There is always something we haven’t allowed for but these days it is pretty easy to diffuse the situation using the coping strategies she has learnt, as long as she’s not overstimulated. There are a few sacrifices we have had to make in our daily lives. Gone are the days of being totally spontaneous but it is a small price to pay.

There’s no way to sugar coat the precariousness of this time in our children’s and our own lives.

We can’t look a week, a month or a year ahead, because we’re still unsure. Nevertheless, one certainty is that today brings a new opportunity for you to reach deep inside, to find that inspiration, and to make today count.

Each of us bears the ability to make ONE SMALL CHANGE. For some of us it may be to drink more water throughout the day, commit to stretching, to eat healthy, or to use our phones for less time throughout the day. However, there are those of us who face more dire challenges such as caring and nurturing for a medical involved child, a child on the spectrum or a child with multiple physical, social, emotional or cognitive challenges, and this letter is to you.

I’m sure you’ve learned a lot about your child over the considerable time that you’ve been cohabitating.  Many families report that they’re seeing some amazing results as the caretaker has become the primary provider for intervention.  I love that caretakers have learned their children’s rhythm, new likes and dislikes, new abilities; as well as other functional skills that are still difficult that may have otherwise have gone unnoticed.

Many times, if left to their own creativity, caretakers will come up with a solution for an area of need that the industry simply has not addressed, because it’s their own.  You know your child the best, and you know how to motivate them. Now that you’ve gotten over the initial shock and embraced the good and the bad of this existence, this could very well be the time that you create a new plan to move ahead for the foreseeable future.  What will your action item be?

If you could work on one skill that would change your child’s life, what would it be?

There are many resources out there, some with more and some with less validity.  While you’re perusing Facebook groups, Instagram, and Pinterest…I would still urge you to consult with a physiotherapist.  The wrong piece of equipment, the wrong time, or the wrong size may not only be frustrating to you and your child, but can be downright dangerous. Most physiotherapist are guided by evidence based information for decision making, combined with creative, out of the box solutions in real time, to help maximize the child’s function and quality of life.

Our mission is your child’s success. Success is relative to each child and that’s the discussion that you, your child and your physiotherapist should have. Create a plan today!  The confluence of practice, repetition, positive reinforcement and challenging the child’s system can make the ultimate difference in what your child learns today.  So, what shall we learn today?

Alfie had his fundoplication surgery in August, and I can barely look at the pictures of him from when he was in hospital. The surgery itself went well enough, but Alfie’s recovery was not straight forward. Alfie is a prem baby, a SCBU graduate. He was gravely unwell, and he came home on oxygen. Alfie needed oxygen once more after his surgery.

This follows the weeks of cannulas and x-rays and blood tests and procedures he had endured during his last stay just a few weeks before.

Honestly, I barely coped.

When the surgery had finished and I was called to go and see Alfie in recovery, I immediately knew something was wrong as Alfie needed suction for secretions. They reassured me this can be normal, but this is a child who has had numerous surgeries in the past and never needed it.

When we got back to the ward, things just got worse. Alfie simply could not breathe. The machine alarmed and Alfie changed colour. His saturations continued to drop before my eyes and nurses came running in to help. Alfie could not even cope with the oxygen mask on his face as he has his own PTSD from our 6 week stay of nurses and doctors doing procedures on him, so would scream and hold his breathe as they tried to help. We had to turn the oxygen up to full capacity and I held it inches from his face so the oxygen would help but he would calm down. That was how we spent our night.

Alfie had so many desaturations that night that I lost count. Even with the oxygen helping him to breathe, his body just could not do it. And all I could think of was him being a new-born baby. His tiny, pale body in the incubator, with what felt like hundreds of wires and lines connecting him to machines. And that is how he looked again, but this was nearly four years later. Four years and we were back to the problems we had had when he was a premature baby.

We were back to the question of is Alfie going to get better.

After a lot of suction and chest physiotherapy, Alfie managed to start breathing on his own again and was discharged shortly after. But the trauma is ever present. Any time Alfie coughs, or his breathing goes quiet, I panic. I am back to having the baby monitor on higher settings so I can listen for changes in his breathing overnight. My body wakes when he goes quiet and I cannot settle again until I physically check he is ok.

Though Alfie is recovering well, mentally we are back at square one with the struggles he is going through.

This year has been tough, there’s no doubt about it. Everybody has undoubtably suffered in one way or another, that’s a given. But parents of children with complex medical or special educational needs have been starved of support in ways that this time last year, were almost unthinkable.

In all honesty, I could probably write a lengthy novel on caregiver burnout and the long-term impact of not caring for yourself whilst you’re caring for somebody else. It’s not selfish, it isn’t a luxury. Looking after yourself when somebody, especially a child, is relying heavily on you to have their basic needs met is a necessity.

I was so determined at the beginning of this pandemic to protect my child with every ounce of me that I convinced myself whilst telling others that it didn’t matter what impact it would have on my long-term health or mental wellbeing. I really didn’t care about me as we were thrown into the world of fear and unknowns. As long as my child was safe and protected from what seemed to be, a very frightening outside world then nothing else mattered. Everything else would be fine.

In protecting my child, in starving myself of all offers of support altogether, in isolating us into such a tight bubble that meant it were just me and him for months on end, I was in fact causing myself significant and debilitating distress. The consequences were that I snowballed my way right down to rock bottom. I couldn’t see what I was doing. I couldn’t see that I was on the edge of a complete burnout. I couldn’t see that I needed support. Many people around me could but I refused to see what was glaringly obvious, for all that mattered was my child.

“I’m fine”. Ah those two little words that can hide a multitude of sorrow and sadness. They became my lockdown motto. That and “I’m just tired”. I was tired. I was exhausted. But it was a kind of tiredness that sleep alone was never going to fix. I needed more than sleep. I needed time. I needed to step away from the bubble of being a carer to find myself again. In that moment I just couldn’t see it.

I was blind to the dangerous and dark situation I’d inevitably landed myself in.

I’d forgotten what it felt like to just be Jaxon’s Mummy. I was his carer, his therapist, his nurse. I wore all the different hats that his medical team wear whenever he’s in their presence. I’d forgotten how to just be Jaxon’s Mummy. I feel sad as I type that. How do you forget how to be your child’s parent? Don’t get me wrong I was doing the necessities to keep him fed, clean and looked after. Medically he never suffered, those needs were always met but I fear that during the time I’d become so consumed in protecting him, he lost his Mummy for a short while.

This is the reality of carer burnout. I genuinely believed it didn’t matter what happened to me as long as my child was protected but I couldn’t have been more wrong. By the time I realised how bad things had become I was in a full state of physical, emotional and mental exhaustion. I struggled daily with overwhelming sadness, I couldn’t sleep and then it took every scrap of energy I had to get myself out of bed in the morning. I struggled to find any joy in my life.

It felt like I was carrying the weight of a thousand universes on my shoulders as I struggled to keep myself afloat, not knowing if there would be an end in sight anytime soon. I was becoming angry. I was forgetful, my life had become a series of calendar reminders and post-it notes. The anxiety that I’d managed to battle and all but overcome many years ago, was back with a vengeance.

Not to mention I’d lost all sense of my own identity. I was feeling resentful of everybody around me. I was eating less. I found no entertainment in anything that I used to. I let all my programmes record and build up, instead sitting in silence, tearful every evening. I didn’t know who I was anymore. I’d lost all sense of self. My thoughts were irrational, and the traits of my personality disorder were seeping into my day to day life. I felt like I couldn’t talk to anybody, we’re all struggling after all. I didn’t want to be a burden so I battled through. It’s always been my way.

Asking for help has never been a strong point of mine.

Luckily on one of Jaxon’s many hospital admissions, I was taken to one side by a member of his team who has been on this journey with us since the beginning. I could see she knew how bad things were although I slapped on my “I’m fine” smile and put up a pretence that actually I really was alright. I wasn’t though. I was crumbling. She all but begged me to allow somebody, a nurse who I know well, to come into our home for a few hours each week to give me some support. It felt that it wasn’t really a request, more an order. But the reality is, I’m so stubborn and determined when I put my mind to something, I just can’t detract from it. I needed to be told.

And so my journey started to find my way out of this place, that pit at rock bottom. In the last few weeks, I’ve been able to accept more help from Jaxon’s Dad and my parents. I’ve opened my eyes to how bad things were. I’ve realised how serious things were becoming and how much I needed to change. It’s enabled me to find the courage to venture out into the big wide world once again and mix with people safely. It’s been just what I needed. It’s given me that sense of being more than just Jaxon’s Mum which ironically makes me so much more of a better Mum to him.

It’s not a weakness to ask for help. It’s a strength. It takes real bravery to ask for or accept help when it’s offered. It’s something I will continue to work on. If you’re feeling burnt out like I did then take my word for it when I say it will not get better on its own. Only you can change it, but you can’t do it alone.

Halloween is less than a month away. With many cities and towns putting restrictions on festivities or even banning trick or treating altogether, the holiday won’t be canceled, but it will look a lot different.

Decorations will still go up, we’ll still carve pumpkins, but our annual trip to the pumpkin patch and trick-or-treating will be out of the question for us this year.

Between the sharp rise of COVID-19 cases locally and the beginning of cold and flu season, we opt to lay low and celebrate at home.

For the past few years, we have gone trick or treating at a local nursing home. It’s a great set-up; the residents gather in the common room of each of the three houses on the property and hand out candy to the kids as they walk through.

They love seeing all the littles dressed up and having that interaction, and we parents have a safe, well-lit place to bring our kids to be loved on and get some treats. This year with all the COVID-19 restrictions, the nursing homes are, of course, off-limits.

I searched for fun, alternative options to the traditional Halloween activities and found some creative ideas that I wanted to pass on:

Zoom costume parties: Gather a bunch of family and friends and show off your costume while catching up.

Candy scavenger hunt in the backyard: Hide the candy in the backyard and give the kids clues on finding it. If it rains, just move the search inside!

Glow in the dark eggs: Some stores sell glow in the dark eggs to hide treats for a nighttime candy hunt.

Go wild with decorations: Many neighborhoods go all out with Christmas or holiday decorations- why not do it with Halloween decorations this year?

Trunk or Treat or Drive through Trick or treating: Many places are hosting safer alternatives to trick or treating- you can check your local events calendar and, most likely, find a few.

Make “Boo buckets”: Boo Buckets are fun to make and don’t have to be expensive. Think of them as a Halloween- themed Easter basket. You can do one for your kids in place of trick or treating or leave one as a surprise on a friend or family member’s doorstep.

“Drive-in” Movie Marathon: Have kids decorate boxes as cars and have a Halloween movie marathon!

This year, if the weather cooperates, we’ll be doing a scavenger hunt in the backyard and a scary movie marathon afterward. How are you planning to celebrate this Halloween?

‘Hygge’ is a Danish and Norwegian word for a mood of coziness and comfortable conviviality with feelings of wellness and contentment.

With a recent study showing that people living in the arctic circle are armed with a mindset linked to this that helps combat the long ‘polar night’, a bit of ‘hygge’ might come in handy for us all… especially for parents of children with special or additional needs.

In a recent article in ‘The Guardian’, some research into this conducted by Kari Leibowitz, a health psychologist, was outlined. She visited the Norweigan city of Tromsø, which is located 200 miles north of the arctic circle.

In the depths of winter, Tromsø gets no direct sunlight at all, and only the faint glow of indirect sunlight for a couple of hours or so a day. Yet, despite this, Tromsø’s citizens do not seem to struggle with low mood or seasonally affective disorder (SAD) in the way that might be expected. In fact, Leibowitz found that generally the mental health of the good folk of Tromso was in excellent shape.

One study by May Trude Johnsen at the University of Tromsø found that the citizens’ wellbeing barely changed across the year. Their sleep was a bit more disturbed without the daily rhythm of the rising and setting sun, but they reported no increase in mental distress during the winter.

So why is this? What is the secret that they share? And how can this be relevant to special needs parents?

Well, it seems that there is a “mindset” that people living north of the arctic circle share, and the further north you go, the stronger this mindset becomes. What Leibowitz found was that the experience of arctic living people built on a lot of other relevant research which demonstrated that how people perceive and frame stressful events strongly influences how they are affected by them.

People who think about adverse situations and events as a challenge, an opportunity to learn new things and to adapt to new ways of living are likely to cope much better than people who focus on the immediate difficulties as well as negative outcomes that “might” happen in the future.

How we respond affects our mental health and well-being, as well as our physical health.

In one experiment, Alison Ward Brooks, a Harvard professor, asked participants to face their fears of public speaking. It was found that by simple repeating “I am excited!” over and over before speaking reduced their anxiety and helped them to perform much better.

In her research of people north of the arctic circle, Kari Leibowitz tested whether a more positive outlook could help to explain and understand the resilience of Tromsø’s residents. She developed the “Wintertime Mindset Scale” which asked residents how much they agreed or disagreed with statements including:

There are many things to enjoy about the winter

I love the cosiness of the winter months

Winter brings many wonderful seasonal changes

Winter is boring

Winter is a limiting time of year

There are many things to dislike about winter

Unsurprisingly, those that favoured the first three statements fared better in the adverse winter conditions than those who favoured the second three statements.

Many respondents commented that they struggled to understand why people would not enjoy winter, with all of the possibilities of winter walks and skiing, and practicing koselig (Norwegian hygge), snuggling under blankets with a warm drink in the candlelight.

What does this scandinavian positivity teach us as special needs parents?

Well it’s so easy to be dominated by negative feelings, fears for the future, the mental and physical exhaustion we can often experience. But maybe if we can train ourselves to find the positives, to look for the opportunities to learn and adapt, we can find our own ‘koselig’ or ‘hygge’ too. We can find that there are ways to cope with our own ‘times of winter’, those dark periods where it all seems too much. And the more we try it, the better we’ll get at it!

Leibowitz emphasises that the aim of what she found isn’t to sugar-coat things or to deny the difficulties that we face; and we can’t hide from these challenges any more than the citizens of Tromsø can pretend that the sun is still rising. However, by recognising our own capacity to control our responses we may all find some hidden reserves of strength and resilience to help us face each day.

Hot chocolate anyone?

The Oxford dictionary says that validation means “…recognition or affirmation that a person or their feelings or opinions are valid or worthwhile”.

What’s that got to do with special needs? Well, a lot, in my opinion, although you’ll make up your own mind on that.

During my time at university studying to become a learning disability nurse I remember a tutor telling us about the “does he take sugar?” phenomenon. Basically, this means that when a person with a disability is out in public with an able-bodied person, attention is always given firstly to the able bodied.

In other words, when taking an order, a waiter/waitress will ask the able-bodied guest whether the disabled individual would like sugar (for example) instead of asking the person directly. Sadly, I saw this a lot in practice as both a care assistant for many years and then a nurse working with adults with neurological disabilities of all kinds.

In my personal life, I have seen the same thing happen to me when I am using my wheelchair due to my Multiple Sclerosis. It’s a strange feeling to be suddenly like a new (and less valued) person just because I am sitting down in a wheelchair!

Our son is a full-time wheelchair user and has been since he was nine months old due to spina bifida. In all honesty I have seen almost the opposite effect in that people absolutely swoon over a child in a wheelchair. I suppose this is because he is of course very cute and there seems to be more “pity” towards the situation of a child being disabled.

That’s a much bigger discussion; what I really want to communicate is that my other two children (triplets…how lucky are we!) are the ones who are often now overlooked, and Jacob spoken to etc much more. I often wonder if other parents find the same thing happens within their families and how they feel about it?

It makes me wonder what will happen when Jacob grows up and is a teenager and then an adult wheelchair user.

I also personally seek validation as a mum of a child with additional needs. There are times that I am sitting with Jacob alone if he has come out of a seizure for example and I just want to scream to the whole world how deeply my heart is hurting watching my beautiful little boy be taken hostage by this horrendous epileptic activity in his brain.

So, what do I do? I’ll ring people, send messages, post on social media, write blogs or ask for help in other ways. I feel I want my pain validated because it has to be so hidden, so I don’t scare Jacob when he is already feeling so frightened.

As someone with anxiety and a chronic overthinker, I then worry that people will feel I am using Jacob’s condition for attention or I am blind to anyone else’s pain when neither is true at all. It also makes me feel very weak that I can’t just “get on” with things that day for whatever reason.

Jacob had a particularly rough afternoon today and I’d happened to have been speaking to my big cousin, Louise, who I don’t see very often but thankfully know I can rely on. I’d told her I didn’t feel strong and she said, “You keep going and you never give up. That’s strength. He doesn’t see your hurt or your worry – he just sees his mum who is always there for him and always will be. That is most definitely strength. You are his person who loves him the best.”

She made me realise that yes, I’d reached out and needed to tell others about how hard I was finding it to support my little boy today, but that there are so many times it happens that I don’t feel the need to talk about it. I just move on and get on with our life.

So, the days I can’t do that I will try to be gentle with myself and realise I am only human and sometimes you really do need someone to validate the struggle.

I remember having a conversation with my manager back in March, she told me to start working from home from Monday 16th full time until we knew what was happening with this virus.  Then we had an announcement re lockdown and from Monday 23rd March not only was I working from home full time, but I also became a home tutor to our son.

I was convinced it wouldn’t last long and Cameron would be back to school in no time – that wasn’t to happen for another five months. My husband was furloughed and for the first time we were all in the house ALL the time, together and we did not know for how long. This was our new normality.

I have kept a diary for Cameron for the last five years now, about memories and funny stories.  I have just had a look at some extracts over lockdown and it made me equally sad and happy:

March:

I’m worried how this will affect your academically.

The number of UK deaths today was reported at 1789 – its accelerating quickly.  You are happy though and your greatest concern is when your magnums are running out.

People are panic buying, there are rows upon rows empty in the Supermarkets. We will be on toilet roll rations shortly!!

April:

GCSE & A ‘Levels cancelled. Markings on the floor of all shops for distancing. Churches closed – graveyards shut. Government vital update letter in the post.

I am so proud of you Cameron – you have received some amazing feedback from your teachers and a school award for when you go back!!

Dad cut your hair today – you are not happy and heard you say to your friend online “yeah so my dad deleted half my fringe and now I look weird”

June:

You asked me “what was life like in 1900, was it like this” – not quite sunshine, imagine not having internet or TV.

Letter from school “Cameron well done for engaging so well with your home learning during this extraordinary time. You have submitted some outstanding work”

Dad went back to work after 10 weeks off work, it was a sad time as we had all got use to just being together laughing and doing things around the house.  You went back to school early September into Year 8, after having only done just over five months of Year 7.  Your tic disorder has heightened through the stress and anxiety of the unknown, for the first time I have not been able to tell you how things will be –  all the uncertainty of masks and new group bubbles, I don’t know how this new school journey will be for you.

The house is quiet now, I miss you coming downstairs and asking me if I’m ok.

I miss you spending your mornings sat with me at the table whilst we both work.  I’m sad that you should be now getting into the year groups where you would possibly go on an abroad trip – I was always so excited and eager to encourage you to do this and take the learning opportunities but I fear that this probably wont happen at all the way things are.  That this is our new normality.