It has been a rough lockdown for us, to say the least. Along with the confusion of explaining to our three-year olds why they can no longer go to nursery and see their friends, we have also had numerous hospital-stays to contend with.

On 20th May 2020, Alfie had a gastrostomy where he had a MicKey button placed so that he can be fed safely. This was supposed to make him healthy and to ensure he had a safe way to feed due to an unsafe swallow, though this was not the reality. And following that, we have had numerous hospital trips and stays due to complications in addition to the initial time spent in hospital following his surgery.

Initially, Rory and Alfie did well. Though clearly missing each other, and the parent that was not with them, through the incredible technology of FaceTime, both of the boys coped well. And yet as the hospital stays have progressed and the time apart has increased, it has become clear just how incredibly fragile a child’s mental health is.

You are constantly told children are resilient and will ‘get over it’, yet at what cost? As the time spent apart increased, each of them has become more and more unsettled and emotional. Where FaceTime once helped, it has now become a help and a hindrance as when it is over, there are tears and heartache once more.

It is not easy explaining to three-year olds why they cannot see their twin.

It is not easy explaining to Rory why Alfie is in hospital and that we do not know when he will be home. Zak and I swapped for a night so that I could get some rest and spend some time with Rory, and though it was lovely, it also highlighted just how hard things are for Rory to deal with. What had been a lovely afternoon, ended in floods of tears. Bath time triggered Rory’s emotions as he saw Alfie’s bath seat and wanted him home. As he sobbed into my shoulder and asked for his brother, there was little I could do to calm him down.

So, children may be resilient, Rory and Alfie have certainly been through more than most, but they are also fragile. In times of confusion for everyone, try to remember this. Their behaviour may be difficult and challenging, but that is how the emotions are for them, after all, in a world where you can be anything, be kind.

Parents of children with additional/special needs need stamina. We know that sometimes things can take a long time before we can see any positive change.

We need to be resilient, in this for the long haul, for life! But sometimes we see a breakthrough with our child that energizes us again, that renews and refreshes us, and sometimes it’s a breakthrough that we’ve been hoping for, for years!

Whatever your views on Winston Churchill, and I write this during a time when we are re-evaluating many historical figures, he had an uncanny ability with words especially during times of national crisis. He once said something that might have been written for parents of children with additional needs, “……never give in, never, never, never, never—in nothing, great or small, large or petty—never give in except to convictions of honour and good sense.”

We strive, we struggle, we learn, we love, we never give in. Even when everyone else says we should… never, never, never, never. And so it was with James and the garden…

(James on his swing circa 2013 when James was about 11. The swing is now gone and the decking area is covered and has a table and chairs, see story below).

James loved his garden swing when he was younger, as you’ll see from above; it was his favourite thing in the whole world. Every day he would be out in the garden swinging back and forth with great gusto, delighting in the speed and the sensation. When he was about 12, in mid-swing and at high speed, he accidentally fell off, hitting the ground hard. Fortunately, other than winding himself badly and giving himself a few grazes, he was physically unscathed. Mentally, however, things were different.

James refused to go on his swing anymore, he had become afraid of it due to his fall. More than that, he refused to even go into the garden. We took the swing down, showed him through the window that it wasn’t there anymore, but he still refused. Over the following three years, James might have visited the garden maybe three times, usually briefly and to collect food if we were having a barbeque outside. He didn’t enjoy the garden at all anymore.

Then, aged 15, Epilepsy entered James’ world, wrecked his confidence, and he rapidly closed down going out of the house. James stopped going to school, stopped going out to his favourite places, stopped going outside the house other than for a few night drives for a long 14 months. Nearly two years ago things changed again; James had rebuilt enough confidence to return into the wider world, enjoying trips to his favourite places, even returning to school. But he still wouldn’t come out into our garden.

It had been well over three years since James had come into the garden at all, three long years where we had tried, and tried, and tried again to support and help James to come and enjoy this lovely space; to share it with us. James always refused, but we never gave in, never, never, never.

And so, last Sunday, James was finally ready to come into the garden again. As with so many breakthroughs, it had to be when he was ready and it came unexpectedly. I was heading out to the garden laden down with bird food to refill the feeders, and I invited James to join me. I even sweetened the deal by offering him an iced gingerbread dinosaur! James declined, and stayed on a sofa in our lounge with his iPad.

As I refilled the bird feeders, using a small chair down the side of our house from the back door, I could hear James, but he was louder than if he was still on the sofa, he must have moved. I returned to the back door to find James stood just inside, giggling. I still had the iced gingerbread dinosaur so showed this to him, he giggled again and handed me his iPad and tough chew bar that goes most places with him.

(Photo above taken when James was refusing to leave the house at all in 2017-18. We used tables with his favourite things to try to get him to come outside; a few times he made it to the table with Winnie-the-Pooh. In the story below you can see where the back door is, the path at the side of the house, the corner at the bottom, and where the rest of the garden is.)

What followed next was like our very own version of the ‘hokey-cokey’… James put his left leg out of the door, then drew it back again, then out again, then in… In, out, in, out (he probably shook it all about too!), but finally he took a step out of the door, then the right leg, he was out! Gradually, we worked our way down the side of the house, round a small patio area, down some more steps and onto a covered decking area where the rest of the family were. James made himself comfortable in a garden chair, requested his iPad, chew, and the ‘prize’ of the iced gingerbread dinosaur, and started looking around wide-eyed at a garden that had changed hugely since he had last spent time there. The rest of us were in shock… delighted, emotional, but in shock!

(James sat on the decking which had once been where his swing was, but now has a covering, some chairs and a table. His sister Phoebe looking on in disbelief!)

We stayed there for about half-an-hour, during which it rained (thankfully we were under cover), and James was clearly delighted to be there. We look forward to him choosing to join us there again next time… maybe not leaving it so long again!Whatever the challenge for your child, no matter how hard it is, how long it has taken to see any breakthrough, never give in… never, never, never, never give in… For their sake and yours, the results are worth waiting for!

Peace, Mark

Image rights: Photo’s and video of James © Mark Arnold

It’s been a little while since I blogged, the last time the world was a very different place!

We are now mid-pandemic and life has changed considerably. You see we are trying to shield my 4-year-old. It’s not quite as straight forward as you would imagine. The government advice on shielding seems to primarily apply to adults.

The advice includes gems like “try and maintain a 2-meter distance between yourself and your family members” and “try not to share living spaces”. I can’t really leave my 4-year-old in a room by himself all day, and we certainly can’t come close to keeping a 2 meter difference when he relies on us for all of his personal care needs. Never mind trying to explain that to his adoring younger brother who loves nothing better than snuggling up to watch cartoons together.

We very early on came to the conclusion that the only way to shield him was to practice shielding as a family. We are very fortunate that my husband can work from home, particularly as a key worker, so on March the 12th my eldest finished his last day in school and we’ve been home ever since.

Remarkably Thomas is coping really well.

He doesn’t particularly want to participate in therapy with me, but he is more than happy hanging out in the house with us and catching snippets of sunshine in the garden when the neighbours are indoors.

And my youngest has plenty to keep him entertained, a big garden and a ridiculous amount of toys that I am very very grateful for right now!

But my eldest? Oh, it’s hard for him. He celebrated his 8th birthday in April and was devastated not to have been able to have his friends for a party, he’d been planning it for months. He’s never been particularly fond of school but even he is now saying he’d like to go! We’ve managed a few online gaming sessions with accompanying zoom calls with some of his friends but it’s not the same.

As the rest of the country starts to come out of lockdown, we have been thinking about what comes next for us. Thomas is still shielding until mid-July time, but how long can we continue as a family, confined to these four walls with no human contact?

This afternoon my eldest sobbed in my arms about how unfair this all was, how much his misses his friends, and the things he likes to do outside of the house. So we have to find a balance, between protecting Thomas’s physical health and protecting the mental health of our other children.

So despite my anxiety, I rang the play specialist from our local hospice and requested an appointment, as I know he is missing her and would value some time with her, and I know that the hospice of all people will understand the importance of keeping Thomas

Our family life is vastly different to that of a typical household. Unique in our setup, our roles have naturally evolved over time. As has the amount of equipment needed to support our warrior princess.

Equipment becomes part and parcel of life with a child who requires assistance to sit, stand, walk, talk etc. It’s quite an emotive process as a parent to go through.

As often is the case, you may be reeling from a new diagnosis or are awaiting results. Your emotions are high anyway, to then see a large bulky metal piece of equipment in your home, tips the balance. Seeing an object, you had never envisaged being part of your lives, there in your living room. That can be hard.

It’s as though a piece of engineering has somehow reinforced the reality of your lives. It makes everything so much more real.

Please don’t get me wrong, we have a great love and appreciation for all the amazing innovative creations that allow our daughter to live a comfortable and supported life.

Talking honestly, from our experiences there are an awful lot of different pieces of equipment. They take up a significant amount of space. So much so, that we brought an additional shed to store some of the equipment and medical supplies as there was no more room in the house.

For a child like ours who requires full postural support, we have nine pieces of equipment at home. We are on the cusp of needing to have ceiling hoists installed to assist with transfers in and out of equipment. Kitchen cupboards have been utilised as tube feeding supplies and medicine supplies storage.

Sometimes it feels as though you are surrounded by equipment and other medical paraphernalia.

And the truth is, you are. It’s part of your life, a huge part. Most days I’m oblivious to it all, it’s only on my more tender days that it all seems more evident.

We are so lucky to live in a country where this equipment is available and our little girl is able to flourish with its support. Violet loves to stand tall in her standing frame and to walk using her walker. Sitting and eating are possible thanks to a seating system which absorbs her dystonic extensions.

So, although it is bulky and cumbersome, we love all of our equipment because of what it makes possible for our daughter.

You have a natural birth, you have a c-section, you adopt…

No matter how your little bundle of joy comes into your life there’s one thing no one tells you about. What to do when they don’t reach their milestones.

In fact, if you just google “baby milestones” things that come up will be information like your baby will respond to sounds by the time they are just one month old, by just four months old your baby will hold their head up steadily and make sounds, by 5 months old your baby will be able to roll from their tummy to their back, by 8 months old your baby will be able to sit up on their own and by 9 months old your baby will be able to pull themselves into standing and sitting positions.

Perhaps your baby has reached all their milestones and really “most” babies will, but can you imagine the feeling of a parent when their child doesn’t do these things.

The first thing you do as a parent when they don’t reach their milestones is research online about what age they should be doing certain things and as a parent of a child who didn’t reach their milestones, I can honestly tell you that the feeling you get is complete heartache and pure worry.

Everyone told me that my child would be sitting up and grabbing toys… why isn’t he?

Then of course comes the guilt of “what did I do wrong?”

First of all, I hate these expectations of what a child should be doing at what ages – my daughter with no disabilities was late at sitting up and didn’t walk until she was around 17 months old which is considered late (apparently!) and I remember that was a worry as a new mum. But when my son couldn’t even grab his toys never mind sit up by the time he was 9 months, I had a horrible feeling in my tummy. I didn’t know who to talk to or what I should have been doing.

So why isn’t this something that is spoken about?

Did you know that around 1 in 20 children have some form of disability? Surely that’s enough for it to be spoken about when having a child, but it seems that it’s not. I understand not wanting to worry new parent unnecessarily but maybe if it is something that could be discussed on what to do or who to contact when your baby doesn’t reach these milestones then it could take the worry away even just a little bit.

Parents need to be reassured not to panic and told that there’s absolutely nothing wrong with their child if they don’t reach their milestones but there’s help out there if they need it! But we could be given information on what to do if our children aren’t doing certain things by a certain age. I know if I had been told what to do then I would have steered myself away from the internet which either basically tells you that you’re doing something wrong or your baby isn’t normal, it’s heart-breaking!

My son was over a year old when we finally found out that he had cerebral palsy and given help with different therapies to help him but maybe I would have found help sooner had I known what to do rather than worry alone at home.

This is why it’s so important to know that there is help out there, it’s nothing you have done wrong and you can get help.

No-one in their right mind would ask for this life.

Sleeping with one eye and ear open at all times, learning to function on a handful of hours broken sleep. Weekly stock checks on medications, feeding equipment, continence supplies. Heart stopping fear as the phone displays the number of the school/hospital ward.

People like us don’t have their friends or families on speed dial – instead, we have our sons neurologist, physiotherapist, respiratory consultant, gastroenterologist. We are on first name terms with the nurses on the high dependency unit. We know the normal ranges for blood oxygen levels, heart rate; the amount of curvature a spine can be allowed to show before bracing is required, or spinal fusion surgery.

We know what true isolation feels like, and how sometimes the loneliest place to be is in a crowd.

Many of us give up jobs to care for our loved ones; some are fortunate enough to continue working. Caring for a child with disabilities cost around three times more than raising a child without, financial worries are a huge burden. And yet we somehow find ways to make ends meet and to provide our loved ones with what they need.

During the covid crisis, families like mine have had to survive without the crucial support from respite teams, hospices, visiting carers. Many have experienced a further drop in income as jobs are lost or workers furloughed. We are an ignored army, left to struggle behind closed doors.

To every parent, grandparent, sibling etc who is a carer – you are amazing, and I see you. I salute each and every one of you for all you do, the sacrifices you make for your loved ones, and the losses you suffer in silence.

I see the injustices you suffer because those who should be helping fail to do so. And I know how incredibly tough the last few months have been.

We have made it to this point, and as the rest of the country starts to return to ‘normal’, many of us will be remaining in limbo as we continue to shield. So, keep your heads held high, mighty army. We are driven by love and hope; there are no stronger forces in this world.

I remember her diagnosis day well.

It arose after we raised concerns about Annabelle still not being able to sit independently at 9 months old, favouring her right hand over her left hand, doing unusual uncontrollable movements and doing things that just seemed ‘different’.

For months prior I had been telling myself that she was premature and that she needed time but there was a niggling feeling at the bottom of my stomach that I just couldn’t get rid of… Was something wrong?

We were still under the local hospital for 3 monthly reviews due to her prematurity. We went into what turned out to be our final meeting and we were forced to ask whether she had cerebral palsy.

Whilst the consultant didn’t say yes, he didn’t say no either but confirmed he would refer us to a child development centre where within 2 minutes of the doctor looking at Annabelle she was able to confirm she did have cerebral palsy affecting all four of her limbs and advised that it was ‘quite bad’. We were told she would need physiotherapy and an MRI but other than that we were not given any indication of what to expect for her future and her mobility.

The next few months following diagnosis were very hard.

Once we had processed Annabelle’s diagnosis as well as we could at the time, we had to start telling family and friends and explaining Annabelle’s difficulties and her differences. The hardest part was trying to explain something we ourselves didn’t really understand and people asking questions that we were unable to answer as we simply just didn’t know the answers.

Not because we hadn’t tried to educate ourselves but because no one child with cerebral palsy is affected the same so predicting her future was and still is simply impossible.

Two and a half years after diagnosis, here we are. We are no longer scared of cerebral palsy. We are embracing life as it is. We still are at the beginning of the long unknown road ahead which is full of bumps and hurdles.

Yes, some days are hard, but the cerebral palsy is an integral part of who Annabelle is and it will always be part of her. Yes she will live life ‘differently’, yes she will have to work harder than most to achieve things that just come naturally to others and yes there will be certain things she simply will not be able to do but we will not let her cerebral palsy diagnosis define her… She is MORE than the disability she has to embrace!

I don’t know about your family, but since this whole coronavirus pandemic erupted and we were placed on lockdown, we sure have been spending lots of time outdoors! We’re a family of 6 so it can get pretty crowded in the house sometimes.

Plus the girls all being out of school and their normal routine and activities sucks to be honest.

At first we were sticking to our 1 form of exercise daily- just walking or taking the girls out on their bikes from our house. In fact I’ve made it a routine now each day take my youngest daughter out on her adaptive tricycle, she loves it when it’s ‘helmet’ time. We go down the lane  and her sister usually joins us on her bike. It’s nice to have that constant everyday for her.

Since the lockdown rules have now relaxed somewhat, we also like to set out for family drives/adventures a bit further afield. Bringing a picnic is a must. The carparks at parks and forests have re-opened and people are flocking out to enjoy the outdoors and gorgeous sunshine we’ve been basking in!

We drove down the coast this past Sunday for over an hour to a forest park. The car park was the busiest we’d ever seen it. There’s loads of trail options and we have an off-road special needs buggy for Brielle so it’s lovely to get out for a decent trail walk or “hike” (by a stretch of the word) as a family. Really does so much good not only for your physical health but also mental sanity!

Staying at home with a handful of kids is no easy job- as many of you can attest to!

So we arrived at this beautiful destination- hungry for our picnic and most of us needing to use the loo. One problem though is that most public toilets remain closed for health & safety reasons due to COVID-19. That was indeed the case at Glenariff Forest Park.

My husband is very practical and a foreword thinker… Thankfully he’d decided a couple weeks ago that toilet access when out and about was going to be an issue for the foreseeable future. So he ordered this camping toilet “Porta Potti” and the chemicals on Amazon a few weeks ago.

We got to use this toilet for the first time in the privacy of the back of our disability van on Sunday. Works pretty well as the windows are blacked out. At first Brielle was very reluctant but she managed to pee in it eventually!

Who would have thought that in the summer of 2020 little portable potties would be a new family necessity for a day out for a hike or a visit to the beach.

I’ve learnt a lot in my 10 years of being a special needs mummy. In no particular order here are my top 10 things I’ve learnt!

1 . The world is not set up for disabled people. The access everywhere we go is still not ready for a child with severe physical difficulties. Changing places toilets are still far and few between and this makes going out incredibly hard.

2. People are rude! People judge very easily and don’t take into account the whole story. I’m not saying everyone is rude but there are so many people that still stare when we go out with Ethan. There are people who won’t adjust events or allow the time Ethan needs to process information.

3. You will make a whole new group of friends. You will make new amazing friends who you wouldn’t have met if you weren’t on this journey. They will totally get how you’re feeling because they are going through it too.

4. I am stronger than I think. The last 10 years have taught me so much about myself. How I face challenges, how I relieve stress, how much I understand medical jargon and most of all how strong I can be, even when times get tough.

5. Hospices are wonderful places full of wonderful people, not scary places. We have been going to our local hospice for nearly 9 years now. I was scared at first, but as soon as I set foot inside, our whole journey made sense. The people who care for us when we are there are the kindest people I know. Providing support and help beyond their means just helps get us through this hard journey.

6. I’ve become a medical expert in my sons’ disorder. Learning new words like tachia cardiac, orthopaedic and resus are words that I use a lot. There are many other words that we have to use and sometimes I amaze myself with how much medical jargon I understand! Watching medical programs, I am now able to explain to my husband what’s happening in the whole program.

7. Sleep is a thing of the past! I know when you become a parent the first year is always the hardest and you never get as much sleep as you did before you had children. Having a child with special needs is a whole different ball game. Late nights, early mornings, all night no sleep parties, seizures through the night providing disturbed nights and the worry and stress of times of illness or hospital stays make for a whole lot of sleepless nights!

8. Planning a day out becomes a military operation. Allowing for emergencies with rescue meds, providing spare changes of clothes, allowing for tube feeds and food for routine times, aces to change pads and daily meds are just a short list of things we need to think of before we go out for the day.

9. Owning a laminator is perfectly normal! All resources I make for Ethan are beautifully laminated with my special machine! Honestly ask around I’m in a special club here!

10. Last but not least, Ethan has amazed me every single day for the last 10 years. His strength and determination have shown the world around us that he is incredible no matter what is thrown at him. His body has been through more than most will face in a lifetime. Every day with him is a miracle and for that I am truly grateful.