Sometimes I feel so isolated. Our situation is unique and it’s so much different than our friends.

I am an extrovert by nature. I thrive off of social interactions and friendships. I love my life, I really do but only having one babysitting option nearby is hard.

Through the four years of having a child in and out of the hospital, we have cancelled many social gatherings. We have backed out last minute to dozens of parties, graduations and showers. It’s been very hard on our friendships and we have lost friends that just don’t understand. It’s been a great indicator of who your real friends are.

Our very close group of friends have a yearly gathering at the lake this weekend and due to the pandemic and our need to be extremely careful we have to miss out. In fact, we have never made the full weekend since we have had kids. It’s one of many that we will miss in the future I am sure as well. Life goes on and we have been adapting for years, taking turns going to events and socializing. However, going out together with friends is very rare, as in maybe once a year.

You see, my parents and my sister in law are the only family that are capable and willing to take care of Sawyer.

If Sawyer didn’t have unpredictable reflux episodes and hard to detect seizures we could have more options. Unfortunately, my parents live 3 hours away and are full time care takers of my grandma with dementia.

This means we are left with one option for babysitting and we often call on her for appointments and various help so we do not call on her for date nights or nights out with friends. I know she would be more than willing. I know she is reading this thinking “I am going to give them a night out” BUT she can’t do it all.

I know that having a child that has so many unique needs makes it hard to carve times for date nights, let alone socializing. When you throw in the current pandemic and we are down right isolated in our friendships and even our own relationship.

Throughout these past 4 years we have tried to adapt our date nights to simply enjoying wine on the porch after the kids go to bed, watching a favorite show together or playing games. The kids sleep schedules haven’t been ideal so we squeeze them in when we can or aren’t too exhausted.

The one thing that we are very good at is remaining positive and finding laughter in the small moments. It’s all we can do for now but this too shall pass and I know we will miss these days of the kids needing our constant attention.

I don’t know about you- but I am SO looking forward to my girls all getting back to school.

This summer, and in fact the whole of 2020 so far has been like no other I’ve experienced.

I’d never have imagined my four girls would have five and a half months STRAIGHT out of school…

I’d never have imagined most of the world locking and shutting down due to a global viral pandemic.

Usually our summer, two months out of school for my kids, is filled with a flurry of activities and trips.  Summer scheme at school, camps, sports activities, meet ups with friends and family. It’s very busy, and full-on especially with my youngest daughter who is 9 now but pretty much requires hands-on assistance and supervision round the clock.

Brielle has missed out on school camps and the week intensive at SENSE (a deaf blind charity) this summer. Also all of the day activities and meet ups with local vision and deaf charities have been suspended indefinitely. Unless you want to do Zoom- which holds no interest for Brielle due to her sensory impairments. She’s a very tactile girl so the move to digital meet-ups and activities is just not feasible for her.

Initially I thought I’d be somewhat apprehensive and worried about measures to keep Brielle safe at school. Strangely though, I find myself a bit laissez faire now, happy enough with any distancing measures, PPE and extra hygiene measures her school put in place to keep everyone safe.

I would not for an instant consider keeping Brielle back from school at this point.

It is CRUCIAL to her communication, her educational and social development that she be in school.

I may feel a bit differently if she’d been on the shielding list or if children generally had been shown to be worse affected  by COVID-19.  Although she does have asthma and chronic lung disease from being born very prematurity, her paediatrician does not feel she is in the most vulnerable category.

Life does have to go on, and adaptions made as necessary. I cannot keep Brielle in a bubble.

My husband and I are actually a bit fearful of what the autumn and winter will bring this year, as the weather gets colder and cold and flu season kicks in. We are dreading the possibility of another full on lockdown and the closure of schools, and praying it never again needs to happen….

Kids need school. Especially you could argue, vulnerable children with special and additional needs.

It seems like a lifetime ago that ‘Lockdown’ began, including the closure of school to all but a few children, in an attempt to limit the spread of the Coronavirus COVID-19.

In reality it was just three months ago… the equivalent of two school summer holidays. For some the time has passed uneventfully, children have been home schooled and life while quieter has continued smoothly. For some it has been hard, the change, disruption and isolation has taken its toll on both children and their families. For some, of course, this has been a devastating period as they have mourned the loss of loved family or friends. Mental, emotional and physical health has been affected in most children, and this can be exacerbated even more for children with additional needs.

With ‘Lockdown’ now easing, and with school gradually opening up, a fresh set of challenges have arrived. Children that have got used to the ‘new normal’ of life at home are struggling to adapt to going back to school. Whether children have been able to engage with home schooling or not, suddenly finding themselves in a classroom again is a difficult transition to cope with, especially as school isn’t like it used to be. With perhaps maximum class groups of 15, many pupils going in every other week, and complex social distancing and personal hygiene rules to follow there is still a lot for children to cope with and it is understandable that this can, and is, causing anxiety and stress.

There is a growing amount of support out there to help families, and this blog post attempts to pull some of this together into one place so that families can access what will help them. I hope that this resource will continue to grow as further resources are discovered, so do keep coming back to see what else might be helpful for you and your child.

So, here’s what I’ve found so far:

Twinkl

There’s a free download on the Twinkl website that helps explain returning to school:
https://www.twinkl.co.uk/resource/returning-to-school-social-situation-t-s-2548814

You will also be able to link to other helpful resources from here.

Widgit

There are also free resources about returning to school on the Widgit website:
https://www.widgit.com/resources/popular-topics/back-to-school-june/index.htm

Makaton
There’s a free downloadable pack about going back to school on the Makaton website too:
https://www.makaton.org/shop/shopping/freeDownloadDetails/Going-Back-to-School

ReachoutASC
Lynn McCann at ReachoutASC has provided a wealth of free downloadable resources here:
https://www.reachoutasc.com/resources/transition-to-new-class

Action for Children
Knowing how to talk things through with children can be hard, here’s some easy steps to follow from Action for Children:
https://www.parents.actionforchildren.org.uk/returning-to-school

ParentKind
There’s lots of useful information on the ParentKind website that can help you navigate a path through these difficult times too:
https://www.parentkind.org.uk/News–Blog

Do-IT>

A wide range of useful free downloadable resources can be found on the Do-IT> website, under their rather appropriate heading of ‘Survive, Revive and Thrive’:
https://www.doitprofiler.com/survive-revive-thrive/

LGfL
The London Group for Learning site has some helpful Social Stories, including different versions of a return to school one:
https://www.lgfl.net/covid19socialstories

Autism little Learners
Just love this site, so full of useful stuff and there are some great Social Stories on this link:
https://www.autismlittlelearners.com/search/label/COVID-19

As with all Social Stories, these should be adapted or used as a starting point to create a specific version for each child. More information about how to create Social Stories can be found on Lynn McCann’s site here: https://www.reachoutasc.com/resources (scroll to the bottom for links to info on social stories).

I hope these resources help you to stay informed able to inform and support the children you are engaged with, either as family or as children’s/youth workers, as they return to school.

Whilst the Firefly equipment is designed for special needs children it is much more versatile than that.

Our ‘typical’ child Isla is the biggest fan of the Firefly Scooot! It is her favourite thing to go out and adventure in when it’s too far for her little legs to carry her.

Our house is full of specialist equipment – Numerous chairs, two standing frames, a walker, a sleep system and so the list goes on. All of the equipment helps Annabelle do all of her daily activities and we are so grateful we have it all but it is also so big and bulky. Consequently, we have less space than we would like for all of the other fun things children like to play with.

Annabelle seeing her little sister enjoying something that we call equipment makes her happy.

She is able to use it but so is her sister and that is a rare luxury.

At present, Isla enjoys sitting in the Scooot and letting us push her along, but once she starts to self-propel this will be a huge motivation for Annabelle to practice her self-propelling and we cannot wait for this! She can watch Isla, she can learn from Isla and then she can try to do it herself.

We always try our very best to adapt things so they are suitable for Annabelle. We want her to use everything she would like to, so she doesn’t miss out, but this involves planning and being creative. The Scooot is so easy, it doesn’t require adapting it’s just ready to go for which ever one of them wants a turn!

Thank you Firefly for creating such a versatile piece of equipment!

Before I had my son Joseph, I was what some people may refer to as a pessimist. At the time I preferred to coin the term as ‘realist’, but no matter what label you put on it, my outlook on life and of humanity could often be quite bleak.

I struggled on and off for years with anxiety and depression and amongst the many challenges this presented within my own life, it also meant that at times I found it difficult to see the good in the world.

Then, enter Joseph.

Joseph made his dramatic entrance into the world on New Year’s Day of 2019, barely clinging to life after sustaining a Hypoxic brain injury during my labour. From birth he spent 235 long days in hospital before having a fundoplication and gastrostomy surgery, then following this, his highly anticipated discharge at the end of August 2019.

Joseph has numerous medical conditions as a result of his brain injury but despite the initial prognosis that seemed quite grim, he is doing fantastically well. He has his challenges but remains a very happy, clever, determined little boy.

A couple of months after Joseph eventually came home, his Dad, my partner Barrie was diagnosed with Guillain Barré Syndrome. This is a very rare neurological condition in which the body attacks its own nervous system. It affects nerve sensation and movement and in some cases, patients end up on a ventilator and need to have intensive physiotherapy to learn to walk again.

Barrie spent two weeks in the hospital before coming home. Fortunately Barrie had a mild case that kept him out of the ICU but still had at the very least a few months of recovery ahead of him. As Barrie was self employed at the time, with no insurance to fall back on for such an event we were up the proverbial creek without a paddle.

It seemed like life wouldn’t give us a break and I certainly wouldn’t have got through all of those difficult months without the unwavering support of our family, friends and Joseph’s large team of professionals that all rallied round to make sure we were doing ok.

In the 20 months since Joseph’s birth and some of the challenges that we have dealt with as a family that I have already mentioned, I don’t think I have ever witnessed or experienced such an outpouring of love, support and kindness, some of which has come from complete strangers.

I like to think that Joseph’s birth was the catalyst that completely changed my outlook on life. In many ways I have him to thank for opening up my eyes to the fragility of life and showing me how precious and valuable it really is. He has shown me what is important in life and I now have a much greater appreciation for the little things.

Although Joseph is most certainly the main reason that I now have a much more positive way of thinking, there are also a great deal of other people to thank for restoring my faith in humanity.

There are not enough thank you’s in the world for me to be able to express the depth of my gratitude for those that have touched our lives with acts of kindness both big and small during Joseph’s life.

Aside from those that are deeply embedded within the fabric of our lives that regularly support us in so many ways. There are still an immeasurable amount of people that have helped in various ways; some that I have never met and may never have the pleasure of meeting, and some that I have only had a one off chance encounter with that I often think of.

I hope they know that they have made the world feel a bit of a brighter place for me and my family.

I’m sure some of these people will likely be oblivious to the impact that they have had and many will never get to hear my sincere thanks. But I’d still like to acknowledge them all the same.

To the NICU nurse that held my hand, hugged me and offered me words of encouragement and empathy whilst I cried the first day Barrie went back to work after Joseph was born. I never did get to thank you properly before we left. Your words have stayed with me. Thank you.

To the lady in the hospital café that comforted me whilst I cried, after embarrassingly dropping my tray of food all over the floor, in front of everyone the morning after a bad night in the NICU. You sat me down and cleared up the mess I’d made, making sure that you brought me a new breakfast over, free of charge. I still haven’t forgotten about that morning. Thank you.

To the lovely people that knit bonding squares for NICU babies. The squares we received when Joseph was in the NICU brought me such comfort at that immensely distressing time. At a time when despite being across a corridor from my baby, it felt as if I were across an entire ocean from him. To have something tangible to hold, that smelt of Joseph really helped me to get to sleep at night whilst my mind was racing. Thank you.

To the lovely taxi driver who listened to me jabbering frantically about Joseph, the first night I took off hospital duty to go and have some time with a friend. You were so empathic and kind as you listened to my story and refused to charge me for my fare. You didn’t have to do that and it meant a lot to me. Thank you.

To the many friends and acquaintances of our extended family that sent cards and gifts for Joseph and who I know still regularly ask how he is doing. Knowing that so many people are out there rooting for our boy means more than you could ever know. Thank you.

To the Aunt (that we’ve never met) of one of our friends that donated £1000 to our just giving page when Barrie was out of work.  To the stranger that has never met us that donated £200, and to the many other wonderful people that donated. That money was absolutely invaluable to us, it helped to provide Joseph with a much needed piece of equipment, it helped to keep a roof over our heads and food in our bellies when all we had as income was my tiny amount of carers allowance and Joseph’s DLA. Thank you all for your kindness and generosity.

To the lady in the local café that took a shine to Joseph. You’ll never know how much it meant to see you holding my baby and chatting to him the way you did. How much it meant to be asked the right questions about him in a way that didn’t make me feel uncomfortable. I hope that others will see you interacting like that with families like us and feel that they can do the same. Thank you.

To the mum of one of Barrie’s old friends that batch cooked us loads of delicious meals for our freezer. You have no idea how helpful this was during a stressful time. Thank you.

To the many other incredible people that I have not mentioned because to do so would take me until next Tuesday. Thank you, thank you, a thousand times, thank you. The world is a better place for having you in it.

I may never be able to personally thank all of these people. But what I can do is play my own small part in paying it forward when I can and be an important piece in the domino effect of kindness to spread around the world.

When I was young, which now feels like I’m going back a loooong way, I used to love doing stuff for charity. Whether it was bake sales at Brownies, selling raffle tickets at school, doing midnight wanders with work, or volunteering in my spare time, there was always something to get involved in. I loved it.

The feeling that you had done your bit and made a difference was great. I knew the money raised or time donated went to a good cause, but I didn’t really think too far beyond that.

But then, suddenly, there came a time when we were offered the support of a charity. The tables had turned!

Heidi was a few weeks old. We hadn’t yet got her home from hospital, and one of our consultants offered to refer us to The Rainbow Trust. I had heard of them before, as we’d done a fundraiser at work for them, and they did fantastic work. Their tagline, “supporting families with a seriously ill child”. (We were also referred to our local hospice, the fantastic Francis House, which unfortunately I had the same reaction to!).

Now, here’s the thing, my brain couldn’t process it – why would we be referred to a charity for seriously ill children? (Heidi was seriously ill, I just hadn’t accepted that yet). I almost instantly decided that I didn’t want their help. I didn’t want to be referred to a charity. I didn’t want pity. I didn’t want people to feel sorry for us. I could cope. I felt like I had a point to prove.

Of course, with the benefit of hindsight, it wasn’t the right decision to turn them away (to be fair though, I was seriously lacking in sleep, with post-pregnancy hormones still whizzing about and pretty much crying if someone said as much as “hello” to me.).

I reluctantly let the referral take place, and a lovely lady came to visit us once we were home with Heidi. I still didn’t feel like it was really for us though. I felt guilty taking up their valuable resources when there were other families who could make much better use of them. So, after a little while things fizzled out (probably subconsciously encouraged by me) and I was fine with that.

Fast forward a few months and the wonderful Reubens Retreat came on to our radar – but again, I still hadn’t learned! I went along to a Mum’s Pamper Day they had organised, for Special Needs Mums. It should have been wonderfully relaxing, but for me it was far from it.

Now I’m not a great chill-out person anyway, but all I kept thinking about was if Heidi was ok at home. She was with her Dad and perfectly well looked after, but I had terrible separation anxiety for a while, and I just wanted to rush back. I didn’t get follow up with Reubens after that, I still didn’t feel ready. I wasn’t in denial about Heidi’s diagnosis, I just, for some reason, didn’t feel like I fitted in (and that’s by no means any reflection on the people I met as they were super nice).

Thankfully though Reubens Retreat didn’t give up on me. A few years later they welcomed me with open arms (ah, the times pre-covid when we could give, and get, big hugs!) when I finally felt it was right for us to go along to one of their family events.

It was a Mexican Fiesta theme, and I knew a couple of other HIE mums who were going to be there. I worried that I was going to burst in to tears when I walked in (which I now know wouldn’t have been a problem at all, as emotions are always understood there!), but it was just a lovely atmosphere. Within five minutes Heidi had a false moustache and a sombrero on, and one of the fab volunteers had brought me and Steve a much-welcomed cup of coffee. Everyone we spoke to made us feel really welcome, and we were so well looked after, it was such a lovely event.

This was what I had been missing out on – for years! I kind of kicked myself for being so silly about it in the first place, but then realized it has to be in your own time, and when that is will be different for everyone.

What has changed my perspective even more is setting up our own charity. Until Heidi was born, I had never heard of HIE. I didn’t know anything about it, let alone how to come to terms with it. Thankfully I found a brilliant parent group on Facebook, where mums and dads, further on on their journey, were always there with a listening ear or words of advice. I’m not exaggerating when I say I dread to think where I would be if it weren’t for them.

As things settled with Heidi, and the years passed, I kept coming back to the thought of what happens to those families who don’t have Facebook, who don’t find support, or are trying to go it alone?

With the backing of family and friends, a bit of good luck and a “let’s give it a go” mentality (winging it is very much in our nature!) we set up Peeps, named after our very own Heidi-Peeps, a nickname she was given by a friend in hospital, and dedicated to supporting those in the UK affected by HIE.

We are registered as a charity. For the purpose things such as grant applications, bank account and constitution, we are classed as a charity.  I don’t really focus on what we’re called though and hope that people aren’t put off contacting us because we are a charity, like I was in the early days with The Rainbow Trust.

I’d like to think we are an extension of a person’s support network, a gentle ear when they need to talk, a safe space to voice fears of concerns, a group of like-minded people who totally “get it” and will have your back every day of the week.

We certainly don’t pity our families or feel sorry for them – they are some of the most resilient, amazing people we know, who also happen to have gorgeous kiddies! It’s a privilege to be involved in their journey in some small way, and if we can achieve just a fraction of what Reubens Retreat and The Rainbow Trust do, then we’ll be more than happy.

We’re also blown away by the generosity of people supporting us (and other charities), with donations, skills and time. Seeing the charity form the other side makes you appreciate just how many good people there are out there.

So yes, my perspective of charities has changed. I have learned a lot, I have seen the great work they do (big shout out too to Ronald McDonald House Charities who looked after us, like they do so many other families, during a hospital stay), the communities they bring together, and the difference they can make in an otherwise tricky world.

Any other year, the start of the 6 weeks school summer holidays would bring wailing and gnashing of teeth in the Voisey household.

How, on EARTH, will we juggle working/child care/therapies/and the rest without the respite that school brings?! This year however, we are rather more blasé about it all. We’ve already juggled this lot for 12+ weeks with no care support or respite, 6 weeks is no problem!

Week four of the summer hols and Sam is heartily bored of the sight of us, I’m hunting through Pinterest for inspiration like a woman possessed, and hubby has taken refuge in the loft under the pretext of tidying. Coward.

Usually, I have no problems at all thinking up activities – usually, we’re able to go out on day trips at the weekend, visit family and friends for a few days, and do various crafty things. However. 12 weeks shielding has rather depleted my crafting inspiration, day trips are a rarity and taking a few days holiday isn’t an option (financial/shielding etc).

The lack of his usual routine for so long has caused Sam’s seizures to go completely off the wall, he’s tired all the time and just wants cuddling, stories and on occasion to fall asleep snuggling next to me under a blanket.

Meanwhile, covid restrictions mean that the majority of my uni teaching will be done online next year. Working in pharmacy education however means there are a lot of things that MUST be done in person, in labs. So, in addition to entertaining the Small One, developing teaching materials and occasionally opening the back door for the dog to go out to the loo, I am also sewing face masks like a woman possessed.

I no longer loathe my sewing machine. It is now my best friend and the saviour of my sanity!

Hubs has just briefly appeared to get a coffee and announce that he is going back into the loft as soon as he’s had a drink. It’s very hard work apparently.

Meanwhile, The Lord has had mercy on me and Pinterest has coughed up several rather fabulous craft projects suitable for little persons, using hot glue (my glue gun is another one of my saviours), cardboard boxes and fabric scraps.

Abbots delivered masses of feeding supplies last week so cardboard boxes are plentiful, fabric we can do and the Dude requires storage for his (mountainous) supplies of LEGO… tomorrow is now sorted.

Hands up everyone who can’t wait until September when the kids (hopefully) go back to school?!

A lot of things I’ve seen are focusing on the negatives to lockdown and being at home.

Yes it’s been incredibly hard but it’s also brought some wonderful times for us too. Here are my top five of things we’ve loved about being together at home.

Time to slow down and appreciate time without dashing here there and everywhere without appointments. We are constantly running around for appointments. We visit 3 different hospitals and one other centre for an appointment. This in between any appointments that can be done at school or at home.

It’s so time consuming so it’s been lovely to have that time out to have a break in the business of everyday life.

Ethans health has been the best it’s been in forever! No hospital admissions, no hospital visits and no catching any from school. Seizures haven’t escalated due to illness or tiredness. Although he’s had a few paramedic callouts this has resulted in us still being at home being able to manage things here.

We’ve had time for therapy that we wouldn’t usually have. Being able to give that time to daily stretches and practising new skills and working on old skills has been so lovely. Everything needs time with Ethan and it’s something we don’t usually have. He gets lots of therapy at school usually but it’s nice for me to be able to have extra input during this time as well.

Ethans eating has been great. He’s finally gained the weight he lost a couple of years ago when he was sick from seizures. He’s worked incredibly hard and whilst being home it has allowed him time to eat at lunch at his own pace. He hasn’t been ill, so he’s not had periods of no eating and it’s been so great for him, plus our dietician is happy!

We spend a lot of time at home during the holidays anyway but it’s been nice to have extra time at home to explore all our toys and create lots of new sensory play memories we’ve done lots of play around themes and Ethans loved exploring different materials using all of his senses.

 

Anxiety: a feeling of unease, worry or nervousness.

We all know what it is, but would you recognise it in a child?

You can probably see it in my child in this photo: eyes looking to one side out of concern, the false half smile, the pale complexion, the rigid frozen stance. If you met her in person you might see the chewing of her tongue, the bowed head, the hiding, or the inability to speak to those she doesn’t know. But this isn’t always how anxiety looks.

Anxiety might look like the silent child, or it might be the screaming child.

Anxiety might look like the child who can’t speak, or the one who can’t stop speaking.

Anxiety might look like the child who avoids attention at all costs, or the child who needs to be the centre of attention at all times.

Anxiety might look like the child who appears to be the ‘teacher’s pet’, or the child who is more like the thorn in their side.

Anxiety might look like the child who conforms always, or the one determined to always stand out.

Anxiety might look like good behaviour, or challenging behaviour.

Anxiety is no respecter of age, colour, gender, geography or religion. It can be found alone or with a long list of other diagnosis. There can be an underlying cause or just a general character trait. It can be mild enough to never be diagnosed or severe enough to need hospitalisation. Medication can help but it can also make it worse.

Anxiety looks like a child at mainstream school or a child with very complex needs.

It can be neurological, psychological or triggered by trauma.

Anxiety can look like any child anywhere.

So, when you next see a child meltdown,

Hear a child scream,

See them physically panic,

Watch their body shake,

Wipe their silent tears,

Hold them as they kick, scream or punch,

Listen as they talk nonstop without a pause,

Feel helpless as they curl up and shut down,

Puzzle as sensory needs suddenly escalate,

Yawn as they can’t sleep,

Feel confused as they over or under eat,

Or struggle to answer an overwhelming amount of questions…

Stop and think that this isn’t a child being difficult, or challenging or disobedient, this is just what anxiety looks like in its many forms.

Be gentle, patient, supportive and reassuring. We all react to that feeling of nervousness, worry and unease differently and children often can’t control what anxiety looks like in their lives.

Be the calm, predictable, stable influence the child needs. You might never take it away but you’ll always leave a child feeling more understood and accepted regardless what anxiety looks like in this life.

To all those who, like my daughter, live with anxiety daily: May more people read this and see you are anxious and support you. You are not alone feeling that unease, worry and nervousness. I just wish it didn’t affect you as badly as it does.  I hope people realise that anxiety looks just like you.