The first case of COVID-19 was reported in the UK on 31^st January 2020, an unfortunate anniversary that is rapidly approaching.

While, rightly, the key focus at this time is the continued battle against the Coronavirus pandemic, there is another dangerous health crisis developing which has the potential to last for very much longer and to adversely affect far more children and young people, as well as their families.

A mental health crisis.

Here’s some of the recent reporting on this, but also seven things that we can do to make a difference for our children and ourselves:

In an article published on 5^th January from the Children’s Commissioner for England, Ann Longfield, she commented that;

“Children with special educational needs and disabilities [SEND] were particularly hard hit… These children need to be in school to ensure they can keep learning but also for their wider wellbeing. A second national closure of schools will see a repeat of all of this, compounding problems that have not been addressed since the first lockdown. The impact of the pandemic on children’s mental health has been particularly worrying. In 2017, 1 in 9 children were found to have a mental health disorder. This jumped to 1 in 6 by last summer. As we do everything we can to tackle this virus, we must remember also that while children are less at risk from the virus itself, they are at real risk from the measures we take to prevent transmission, and that risk cannot be ignored.”

You can see the full article here: https://www.childrenscommissioner.gov.uk/2021/01/05/lockdown-school-closures-mean-we-need-to-act-now-to-save-childrens-education-and-wellbeing/

The BBC published an article on 7^th January which added to this worrying narrative.

Parents shared their stories of the challenges they faced trying to get support from school, sharing feelings of despair at being “abandoned and let down”.

Rumya Kumar from Swindon has decided to keep her 13-year old son, who has autism, at home as she has lupus.

She kept him home during the national lockdown last March, but his condition deteriorated as a result; “He is quite happy not to go out… to stay at home with no school. But the problem is the more he stays at home, which is his comfort zone, then the harder it gets to send him to school.” 

She added that it took him the whole of the autumn term to readjust to school.

Due to the uncertainty of the pandemic, she said the doctors had to increase his anxiety medication to help him cope.

The full BBC article can be viewed here:
https://www.bbc.co.uk/news/uk-england-55551913

In an article published by Special Needs Jungle on 5^th January, they commented that;
“Some families are dealing with the emotional fallout of the loss of loved ones, loss of an income, or wondering how to pay for life’s necessities. Even if you think you’re doing okay overall, you are likely to have times of feeling low, listless and lacking motivation. Children are not immune from these same feelings, but with less control over their destiny or the maturity or experience to deal with it. And that’s before taking into account any special educational needs or disabilities they may be contending with.”

The full Special Needs Jungle article can be viewed here:
https://www.specialneedsjungle.com/more-parents-seeking-childrens-mental-health-support-in-pandemic-with-growing-pessimism-over-support-delays/

So, what can we, as parents, carers and other family members, do to help to protect the mental health and well-being of our children and young people, and ourselves, during this lockdown.

Options might seem limited, but there are things that we can all do that can make a positive difference both to the mental health and wellbeing of our children and to ourselves.

Here’s my seven top tips:

1. Exercise! Try to get your bodies moving. That might be anything from a walk or roll around the block to a full Joe Wicks workout, but the more we move the better our mood, so get moving!

2. Exercise your minds too! Keep your brains active. That could be by doing puzzles, playing games, telling stories, reading, anything that makes you all work those little grey cells a bit.

3. Eat well! It’s easy to fall into bad eating habits during lockdown, and comfort food can often seem to be a remedy for low mood, but eating a balanced, healthy diet can make a real difference both to our bodies and our minds. Drink plenty of water too.

4. Go outside or let the outside in! The first lockdown was accompanied by some fantastic weather, most of us were able to get outside and get our children outside and we benefitted from it. This time the weather is… less helpful, but some fresh air and a glimpse of sunshine can still lift our mental health. Even opening a window and letting the fresh air in can make a difference.

5. Talk with people! OK, we can’t see people like we would like to, but we might be able to phone, Zoom, FaceTime or whatever works for you? Hearing a loved one’s voice, maybe seeing their face if only on a screen, all can still help us feel less isolated and alone. Days without social contact can affect most of us, but if we keep in touch we can keep on top.

6. Have fun! Make sure there is time each day for the things you and your children enjoy doing. If that’s watching TV or time on the Xbox then don’t beat yourself up about it, your mental health with thank you for it. Go easy on yourselves, some days just getting through without anyone being lost or killed is a win!

7. Look for the positives and celebrate them. What went well today? What made you or your child smile? What were the wins? Focus on them, celebrate them, and repeat them!

By keeping an eye on our mental health and the mental health of our children, we can help to limit the impact that lockdown will otherwise have.

Let’s be active, in every way, and look after our well-being!

Dear Daddy,

I want you to know that I think you are the best Daddy in the world.

I’m not sure I know any other Dad’s but none of them can be as clever and funny as you.

You have learned so many new things to make sure you can be the best Daddy for me.

You’re never too tired to cuddle and play even though lots of times, you’re awake to look after me in the night whilst me and mummy are sleeping.

I know that sometimes you are very tired from working hard and because you are always doing lots of jobs at our home to make it nice for us.

Thank you for making it a nice place for us to live, I feel happy and safe in our home.

I love it when it is just me and you Daddy because that is our special time.

I like it when we wake up in the mornings, you take me on a walk around the house and  we look out of the windows.

You talk to me about the weather outside.

I love the songs you sing to me Daddy and when we play guitar together, you let me do the strings all by myself.

I love it when you fill the bath with way more bubbles than Mummy and you sing the Ducky song.

You are my best mate in the world and my hero.

You always look after me and Mummy and I know that when you are not at home for lots of days and I miss you, it’s because you are working hard to make pennies to buy me monster trucks.

I like seeing your face on Mummy’s phone before bedtime when you’re at that work place.

I love it when you talk to me and I get excited to touch the phone like I touch your face when you’re at home with us.

You and mummy taught me all about gentle hands when I do face touching and I like touching your face because that is how I tell you I love you.

Lots of love from Joseph

Be honest…are you singing along David Bowie’s hit song with that title?! I am now anyway!

Also be honest…are you feeling under pressure at the minute?

I’d guess the answer for most of us would be yes.

Schools are closed, hospital appointments are limited, contact with family and friends is restricted and we have just so many rules imposed on our lives.

Add that into the mix of having a child with complex needs and you’d be superman / superwoman to say you aren’t feeling the pressure of it all.

2021 was meant to be better.

Yet here we are, in lockdown number three!

Our six year old triplets are now being home-schooled by a mummy who has very little confidence in what she is doing.

It is terrifying, the weight of responsibility of educating my little people without any formal teacher training is definitely upping the stakes for me and putting the pressure on.

Our little man with complex needs is not able or willing to engage with home-schooling at all.

In fact, I’ve been fired already, apparently I’m “too boring”.

In fairness he has a point, I am definitely not as good as his school at making this all fun for children.

On top of his education, he is battling a variety of complicated health issues that are all creating frustration within him that is showing itself as challenging behaviour.

I truly believe all behaviour is communication and it is fairly obvious what he is thinking when he throws his sheets and pencils at me and wheels himself out of the room.

His medical appointments are now being done remotely in any way they can but have obviously reduced at a time when he is in crisis.

In the midst of it all, the building works began back in December to adapt our house to be more suitable for Jacob.

While this is clearly a positive thing, it is also additional pressure to have a team of workmen about with a child who doesn’t like change or understand why people are “smashing everything”.

I also have Multiple Sclerosis and for a variety of reasons have been classed as “Clinically extremely vulnerable” which means we have to limit who can come into the house as well as where I am able to take the kids.

We’ve decided it’s too risky for me to go to crowded play parks so I have enormous mummy guilt that the kids are missing out even more because of my own health too.

We are all trying our best to manage, but I know so many of us can relate to the feeling of being under too much pressure.

Special need families have the additional pressure of trying to keep our little people safe with reduced support at a time when you actually need even more.

It can feel very lonely if your child is unwell and you don’t have your normal routes of asking for help.

Jacob has started taking seizures through the night, which means I don’t sleep well and watch his “spy cam” to make sure I can see him breathing.

It can feel so intense.

I think now especially it is so very important to practice self care whenever you get a chance.

I have excellent support from my husband (who is working from home) and my mum who is our “bubble” household as she also helps so much.

Our other family and friends support us in any way they can within the limitations covid has put on us all.

Actually, one of my friends nominated us for a “shielding care package” of groceries from an amazing local farm and we won (along with lots of other very deserving families)!!

There are so many good people out there!

I hope you have good support in place too and if you don’t, please find some.

There are a lot of charities still running to support people under too much pressure right now so use any resources available to you.

Stay safe and remember this is all temporary!

Buying shoes for your child; it is something most of us would take for granted.

However, buying shoes for my child is an arduous and almost impossible task that often ends with me feeling depleted and disappointed.

My child has severe feet contractures caused largely by his increased tone that affects his entire body due to his brain injury sustained at birth.

It’s something that could have possibly been avoided, however he spent a lot of his first year in hospital therefore missed out on a great deal of important therapy.

Basically, his feet turn outwards and when manually brought into a more natural position, they won’t stay there.

He has limited movement in his legs and feet which also doesn’t help.

It leaves me once again asking what if?

There have been times I have despaired because I’ve punished myself over and over, asking myself questions that nobody could ever answer.

What if he hadn’t have developed a devastating epilepsy diagnosis at just a few months old?

What if we’d been able to better control his reflux so he’d not become so dangerously underweight when he was younger therefore not spending so much time in hospital?

What if we’d started therapies sooner? What if I’d tried harder? What if I’d done more?

Slowly but surely though, I’m finding ways to be kinder to myself.

The mum guilt has never gone away, I doubt it ever will. But I will no longer punish myself relentlessly day after day.

I’ll allow myself to ask the questions and to have those feelings then I’ll try to distract myself until they pass. 

This particular guilt though, it’s a huge one that I carry daily. What if I’d done more with his feet. Could I have prevented the contractures becoming so severe? I guess I’ll never know. It’s a tough one though. These contractures could have significant and devastating consequences to his physical development as he continues to grow.

The reality is though, I can’t change them.

The positioning of his feet is so severe that the only possible way to correct them would more than likely be surgery but with a child that’s almost guaranteed to be non-ambulatory, it would be neither in his best interests or worth the risks for this type of surgery to be carried out.

Not unless he ends up in an unbearable amount of pain.

So this leads me to where we find ourselves now.

A few months ago I begged and pleaded with our physiotherapist for help with getting some shoes that would both be comfortable for him but also reasonably easy for me to put on.

When I say reasonably easy I mean it can take me up to 20 minutes to put a regular pair of shoes on him and even then it’s evident by looking at his facial responses that he is far from comfortable or happy. 

A referral was sent to our local orthotics team and an appointment was arranged. 

I found myself being entirely listened to, heard and understood during the appointment and whilst I grasped there would be no real therapeutic benefit to a pair of shoes being specially made, this was still hugely important for me.

More-so for the social side but whilst also ensuring protection and warmth for his feet.

So with a couple of minor setbacks caused primarily by recurrent leg fractures and his appointments falling at times when he was in a leg cast, his shoes have now been made.

They are still having the final finishing touches made to them following the fitting just a short while ago but they look amazing.

Not only that, they’re easy enough for me to put on and most importantly, they don’t make him unhappy or uncomfortable.

I feel like I’ve been waiting for the moment where I can put my child in a comfortable pair of shoes for far too long but now we are almost there.

It might not seem like a big deal to most but to me it’s yet another stark reminder of how different our life looks, how many obstacles we have to face and how difficult some challenges are to overcome.

But we are getting there, one tiny step at a time.

We’re back in lockdown again, schools are closed to most children again, many families of children and young people with additional needs are struggling again.

It’s like we’re in a recurring lockdown ‘Groundhog Day’, but there are things that families as well as their support networks can do to help everyone to be able to cope better, to make this lockdown a little more manageable.

Here are my seven ‘top tips’ to help us all survive another lockdown:

Try to create a daily routine, a ‘new normal’, and stick to it as much as possible.

Many children with additional needs can struggle with unpredictability and uncertainty, so try to keep a rhythm each day that they can get used to.

Encourage them to help you to create this.

Use a visual timetable to help them to know what is happening each day.

This could use symbols, if they use these to help with communication, or photos of the different activities, key moments  etc.

Knowing what is happening now and next is really important for everyone!

Do they have a ‘safe space’ if they are feeling overwhelmed?

A place they can use to calm and de-stress or re-set? Maybe make a ‘den’ together that they can use for this, with some blankets over a table and some soft cushions inside.

Help them to be able to communicate how they are feeling. It may be through speech, but could also be through writing or drawing something; whatever works for them.

Reassure them that you are there for them and however they are feeling you’ll work through it together.

If they have questions about the virus, look for resources to help them understand it better and to know how to stay safe.

There are resources in the COVID-19 category of my blog site; click here coronavirus to find the resources I shared in the first lockdown, which are just as relevant today.

Look for the positives.

A study of the people of Tromsø in Norway found that despite them living in darkness for months at a time during winter, their mental health was excellent because they had learned to focus on the positive things that they could do while it was dark, like cozying up around a warm fire with some cocoa, looking at the night sky, going for a frosty walk, or putting some candles or pretty lights on, rather than the things that they couldn’t do.

There’s a practical lesson for us in that right there! The Danish and Norwegians call that sense of coziness Hygge (Hue-Guh) and it’s related to the English word ‘hug’.

We could all do with giving ourselves a cozy hug at the moment couldn’t we?

Have a look at ‘One Thousand Gifts’ by Ann Voskamp – spend a few moments each day thinking of three things that have gone well, three things to give thanks for, and write them down in a journal.

The day might have been a disaster, but if just for a few moments we can think of those three things and be grateful for them it can change our mindset and help us to look for these positive moments every day, as well as giving us a resource of good memories to tap into.

If you can manage to do this for a year you end up with one thousand positive moments or ‘gifts’.

I hope these tips and ideas will help you to cope with this lockdown a little better, whether you are a family with a child or young person with additional needs, or someone that supports and helps them.

Let’s survive this lockdown together!

As SN families we often wish we had a crystal ball – whether that comes in the form of searching for a diagnosis, preparing for future health issues in advance or knowing how our beloved children’s needs will change, to be able to have some way of knowing what to expect is something we all struggle with at times.

Sam is under palliative care and has been since he was 12 months old.

Many people think palliative care is something to fear, that it means death must be imminent, but that absolutely isn’t the case.

For us and Sam, it means ensuring he is cared for properly and has the correct equipment and/or adaptations and care in place to make his life comfortable, pain free and to allow him to live fully.

The events of this year have burst our little bubble of ignorance as to our sons likely future, his expected lifespan especially.

They have also brought into clear focus how his general health has been impacted by almost a decade of non-stop seizures, aspiration and limited mobility.

And this is where his palliative care consultant has really come into her own.

Once Sam was home and recovering well, we had a long chat about how best to manage Sam’s various health issues.

Instead of dealing with his epilepsy in isolation, or his gastro issues, she took a holistic view of our son.

Together, while calm and able to think about what we were discussing, we put together a symptom management plan.

This was then shared with Sam’s GP, the children’s hospice and is including in his medical notes.

Now, whenever he goes into hospital etc, whether for routine visits or emergencies, everyone knows the plan for what to do in various situations.

Its taken a weight off us as his parents knowing there’s a plan in place and it helps his medical team. Its a win all round.

While I dearly wish things were different, it has already shown its worth. We may not be able to predict the future, but we can certainly prepare for it.

As a mom to multiple little ones who have medical needs and disabilities, I like to think that I never give up.

I have become a fighter—a mama bear—and I am willing to stand up to anyone and everyone who tries to put unfair limits on my children and their abilities, opportunities, and quality of life.

I do not accept no as an answer when it comes to my children and what they want, need, and are entitled to as human beings full of priceless worth.

However, in the midst of all this persevering and advocating, a difficult question I have come face-to-face with recently is this: What do I do when the answer really *is* no and I cannot change it no matter how much I, or my child, may ache to?

This kind of scenario is painful to even allow my mind to think about.

And yet, it is very much a part of reality at times for me, my children, and our family.

As much as I wish I could change absolutely anything for my children, there are certain situations or circumstance I simply cannot alter—at least not at the current time–no matter how hard I fight or how committed I am.

So what is left to do? My therapist (if you are a caregiver and do not see a therapist of counselor, I cannot recommend it enough) recently shared some perspective about acceptance with me.

He explained how acceptance is just that—simply accepting that which we cannot change.

The essential realization when it comes to acceptance is everything that acceptance is not and cannot be.

It is not approval of what is happening. It is not giving in. It is not agreement.

As a mom I must step into the unique and sacred role of modeling acceptance for my children while also leading them onward without giving up or giving in.

Together, we accept their diagnoses as best we can.

Together, we sometimes have to accept lack of options available for healthcare or therapies, even if just for a season of life.

Other times we must accept the inconvenience of adaptions that don’t quite measure up to the experience my child deserved. 

At the same time, acceptance is never our habit or our norm.

Acceptance is not something we take on lightly or without full exploration of options.

But sometimes, acceptance cannot be avoided if we wish to keep moving forward.

My precious children must face some agonizing realities about their bodies, about their comfort, about society, about their futures…about many things.

But for each difficulty we cannot change and therefore must accept, there are hundreds of things we do have the privilege of refusing to accept and working for until the change comes.

It takes wisdom to discern when acceptance is the single remaining option and when it is not.

May we as caregivers be willing to never accept that which we or others can change and gracefully accept that which we cannot—perhaps coupled with the hope that someday, we can.

A couple of weeks ago, whilst Jaxon was still in bed I was carrying out the arduous early morning routine of preparing medication and feeds for the day.

He was still hooked up to his sats monitor, he usually is when I’m not in the room with him.

Then the beeping started.

I waited a few seconds before succumbing to the urge of needing to check he was okay.

What I walked into, I was neither prepared nor ready for.

Jaxon was having a tonic clonic seizure.

His epilepsy is refractory and very complex following a diagnosis of infantile spasms in May 2019 that we were never fully able to control.

But tonic clonic seizures, the type that you often see on the TV, are rare for him.

They’re the type of seizures I have to be prepared to give rescue medication for but in that moment I went into a full panic seemingly forgetting everything I needed to do.

I felt myself crumbling as I fumbled for my phone to try and film some of what was happening.

It may sound unusual but it’s handy to have a minute or two of video evidence to show his team so they know what we’re dealing with.

I had hoped once I’d stopped recording that the seizure would’ve stopped but it hadn’t.

I have roughly a five minute window before I administer rescue medication but both his sats and heart rate were dropping.

I panicked, I called my mum.

But less than one minute into the call I said I need to call an ambulance and cut the call off.

As I made the 999 call I was already prepared for what they would say. “Is the patient breathing?” followed by “is the patient awake?”  

It’s a routine I’ve gone through many times since the birth of my child so I know exactly what to expect.

“Is the patient breathing?” the operator asked me. “Yes he’s breathing, yes he’s awake but he’s having a seizure and it’s not stopping, please send an ambulance, he’s two years old, please help me, please.” I begged.

How I managed to fumble my way through the call I do not know.

I was hysterical. I thought I was going to lose my child in that moment and there would be nothing I could do about it.

As I was on the call I begged Jaxon to stop fitting, I just needed him to be okay.

I ran to the door to open it and ran straight back to him.

The operator was warm and calming but I knew she could sense the panic in my voice.

She kept telling me how well I was doing but I felt like I was failing him.

I was counting down the seconds, do I give the medication? Do I wait?

He’d have brief moments where he would seem to stop then he’d go straight back into it again.

It took all of about four minutes for the rapid response paramedic to arrive although it felt like about four years.

No sooner had he entered Jaxon’s room, he stopped seizing.

The relief crashed into me and I felt my legs begin to buckle.

I had hold of the rescue medication, ready to administer it but I was so thankful I hadn’t needed to give it.

His heart rate and sats started to correct themselves again whilst Jaxon looked at me seemingly wondering what all the fuss was about and who this stranger was in the green and yellow uniform stood over him.

Shortly after, the paramedics arrived and despite the fact the seizure had stopped, it was agreed that it would be in Jaxon’s best interests for him to be checked over in hospital.

So we headed there in the ambulance.

We were only there a couple of hours and luckily we had a chance to catch up with Jaxon’s paediatrician who made a couple of small alterations to his seizure medication.

As we arrived back home and I carried Jaxon into his room, I was instantly reminded of the fear, devastation and pure helplessness I’d felt that morning.

Once I’d safely put him down I broke down in tears.

I felt myself being consumed by grief and anxiety that this could happen again.

You can never truly prepare yourself for the moment it happens again, you just have to dig deep to find a strength you likely didn’t even know you had to simply keep going.

You keep going in the hope that it won’t be today, tomorrow or even the day after that you’re faced with a challenge so frightening that you feel so powerless to control.

Parents who receive the news that they are likely to live longer than their child go through quite the maelstrom of emotions.

For me, there was initial devastation, followed by anger (well, fury would be a better word) at the unfairness of life, followed slowly by a form of acceptance.

Over the years we got so used to seeing our boy defy his prognosis that in a way it didn’t feel real saying that he was classed as life-limited.

We enjoyed a typical happy family life.

Yes, there were many hospital admissions, and we always knew that his condition was life-limiting, but it was never something that we actively thought about.

Then this year out of the blue, he developed a rare but very serious lung infection and we came agonisingly close to losing him.

Had we not been in hospital with him already there is every chance that we wouldn’t have got him here in time.

And all because of a little bacterium that lives in many people’s lungs harmlessly.

That infection didn’t so much burst our comfortable little family bubble but ripped its heart out.

As he battled to live, the Dr’s battled to not only against the infection but also against our little boy’s health issues.

Sam’s condition is due to a brain malformation, which is not going to get worse.

However, years of relentless seizures and aspiration have done considerable damage to his 9yr old body.

His health has most definitely deteriorated.

Parents like us want people to know that while grieving for a child who is still alive is a very distressing experience, it is something we often have to go through.

It’s a way that our brains can process the hand we and our babies have been dealt.

We want people to see that our children are not just a collection of symptoms/conditions to be mitigated or treated… they are mighty little people who face enormous challenges with a smile.

Please don’t tell us to ‘enjoy making memories’; we know how precious these are but ultimately all we want is our child alive.

Reminding us to make memories while we can is like reminding us that our children aren’t going to be around as long as they should be.

We really aren’t any different to any other families; we love and laugh the same, and need time out from each other on occasion.

Knowing that something is going to hurt doesn’t make it hurt any less when it happens.

What we want you to know is that we want to be able to live as a family the same as anyone but that if/when we have to face life without our child, our friends will be there to catch us when we fall.