Hands up if, like me, you have been stirred to learn a new skill or brush up on a neglected one during lockdown?!

As we’ve now been without our usual care/support/respite network for the best part of 3 months it was high time that I started to do something (anything) that was just for me and not a part of my caring role… I may adore my son beyond words, however mentally lockdown is leaving me feeling stifled, frustrated and more than a little low.

Given that I have something of an obsession with picking up various fabrics wherever I go, it seemed as good as time as any to unbox the sewing machine, check it was still working and get back to improving my now very rusty skills. Initial success making fabric face masks has encouraged me to try and be a little bit more ambitious… and that was where the problems start!

I swear to you, this machine is the Spawn of the Devil himself.

Much cussing has been heard echoing out of the living room this week as I battled yet again to work out what was wrong with the wretched thing this time… being the Mum of a medically complex little chap has taught me patience, or at least I thought it had, but this pest of a machine seems to have been sent deliberately to fray the last nerves I had still intact… and in so doing, it has allowed me to sob, rant, rage and release the tension and angst that have built up over the last months of struggling to juggle everything while feeling that I’m not managing to do any of it very well.

This lockdown is getting harder the longer it goes on. The absence of that critical support network of carers, hospice, family, friends is weighing more heavily now. So, while it may not be very enjoyable for the rest of the household to hear me call a Singer sewing machine every name under the sun (and a few of my own devising), for me it has a cathartic effect that I haven’t found from anything else – and I do A LOT of different crafts!

I shall end the post with a hope that everyone out there struggling with this situation finds something to help them through it. Don’t feel you have to be somehow more productive because you suddenly have so much time at home – not everyone wants to learn a new skill during lockdown; let’s be honest, it’s a situation that is very far from normal. We’ll all get through it, in our own ways.

There is one part of being the mother to a disabled child that I really hate… Fundraising.

You might not think they necessarily go hand in hand, I didn’t back before. But when you have a child with such complex needs you soon realise that this magically safety net, we thought we had is full of big gaping holes.

My husband and I have always valued the NHS and the importance of contributing towards it, we would always say how worthwhile it was knowing that should something happen then we would be looked after if needed.

Then something did happen. We had Thomas who came with a whole host of diagnoses, professionals and additional needs. It really didn’t take long before we started hearing the words “I’m sorry but there just isn’t funding for that”.

“I’m sorry, I know you cannot access a supermarket, but we cannot fund the piece of equipment that would allow that”. To begin with it was a mild frustration, the items we needed were just a few hundred pounds and we found ways to self find them. Thomas had a few birthdays and Christmases with pretty boring presents!

But Thomas got older, and our collection of equipment got bigger. He needed an indoor seating solution, he needed a wheelchair, he needed a relaxing seat, a bath seat, a standing frame, a floor seat, a therapy bench, a walker… The list goes on.

I spent hour after hour in appointments with specialists or researching on the internet for the equipment that would provide him with the right support and allow him to engage in family activities. Trouble is, once we worked out what we needed I kept hearing “I’m sorry…”

“… It’s too expensive”

“… We don’t have a contract with them”

“… It’s not our responsibility”

“… It’s not our budget”

Our Occupational Therapist told me that her department annual budget for all the children on their case load was less than £50,000. Now, to be fair, I don’t know how many kids are on their case load, but that’s not a lot of money. Not when the stair climber we most recently took receipt of cost almost £10k.

And it’s not that dissimilar with therapy, we’re lucky, we’ve managed to access NHS physio and speach and language pretty much fortnightly from birth. That’s very unusual, and it’s set to drop once he starts school in September.

They just don’t have the staff to provide more than that. They don’t have the funds to provide the equipment that best meets his needs. Now I’m not an easy woman to say “No” to, but sometimes even I have to admit defeat.

So, what then are our options? Despite having a comfortable income, we can’t keep up with the spiralling costs of having a disabled child. As an example, last year we spent nearly £6,000 on additional therapy. For that kingly sum I’m sure you’re imagining we might have seen a therapist very regularly, perhaps a couple of times a month?

You would be mistaken, it paid for 10 days on intensive therapy, approximately thirteen 50-minute sessions. It was brilliant and very worthwhile, but it gives you an idea of the sums we are talking about.

Very few families will be able to maintain those sorts of costs year on year, so the only other avenue available to us is fundraising. There is nothing quite so humiliating as having to ask friends and family and strangers over and over again for money. But us special needs mumma’s are like lionesses, ready and prepared to do anything for our cubs.

So, we make social media pages, and start selling our cause. Not too upbeat, people need to understand that you’re in need, but not too depressing as people might get bored. Exposing your child to public scrutiny, constantly weighing up how to protect their dignity while showing people why you are so desperate to beg for money.

It can leave a nasty taste in the back of your mouth. But then, then there are all the wonderful and generous people out there who support you over and over again, cheering you all on, helping you out as much as they can and it reminds you of the beauty in the world and humanity.

We’ve been spending more and more time outdoors these past few months, as the sun has been so gorgeous and the rain has, on the most part, stayed away.

There’s not a lot my daughter with complex needs enjoys more that getting outside.

Last summer we made an investment into an off-road special needs buggy- to take her on trails, walks and even the beach instead of her wheelchair. Wheelchairs are just not made for off-road or rugged terrain. Believe me, you’ll know what I’m talking about if you’ve tried it!

She’s 9 years old now, so is getting heavier to push now but her 3 wheeled all-terrain buggy makes it a breeze. She can’t walk unaided and having the option for a longer trail walk means we can enjoy the outdoors as a family of six (Brielle is the ‘baby’).

Another activity Brielle adores is getting out for a ride on her special needs trike. Whizzkidz UK so kindly granted her a gorgeous trike last year and we’ve been getting great use from it – going out every day especially during the pandemic.

We have a few fun things in our back garden too. A giant red spinning top from ROMPA, a rockers chair from Ikea, and balls of all shapes and sizes in a basket she loves playing with. We usually put out a picnic blanket and let her play while we read, listen to music and enjoy the sunshine.

Sometimes you just need to get out of the house…

My older girls have been making a habit of going swimming in the sea (Belfast Lough) in their wetsuits. We’re so blessed to have good friends and neighbours across the road with a private entrance to the beach! Brielle and I go over to their big garden and deck to keep an eye on them, and sometimes she walks on the beach with me and dips in her feet. She usually shy’s away from the cold water pretty fast though!

Today we’re planning to go walking in a forest park and hoping to find some Elderflower we can pick to make some cordial to bottle. I bought the lemons, oranges and citric acid earlier to make a big batch. It’s definitely a summer favourite in our house- sparkling elderflower cordial in wine glasses decorated with mint leaves and frozen berries sometimes!

So, there’s just a few ways we’ve been getting outdoors with the kiddos, and I have to say Brielle loves every minute of it! I think it’s really helped keep her sanity and her mood up during these last few months with no school and very little social interaction. There’s nothing quite like a gentle breeze and the sun on your face!

The warm weather has been around for a few weeks off and on in the UK. We have been enjoying bits of it in our garden. This time of year is fairly tricky to try and keep Ethan cool and not overheating.

Ethans seizures can be triggered by heat so we often notice an increase in seizures during the warmer months because of this. We have found a few things that work to try and keep Ethan cooler so I thought I would share them with you.

Pet Cooling Mats

Pet cooling mats or gel pillow pads are great for popping under ethans back or feet to cool him down. Ethan spends a lot of time in his wheelchair so these can easily be popped under his back. All you need to do is keep replacing them as they will warm up so need to be back in the shade to almost recharge a bit and make them cool again.

Wet Cloth

When we’re out and Ethan gets hot, we use a muslin square or any piece of material really and soak it with water. We then wrap this round the back of Eths neck, head or wrists to cool him down. He really enjoys this and it’s easy to take out with us and you can keep refreshing the water to make it colder. Cooling the wrists really helps to lower the body temperature.

Wheelchair Umbrella

We use a wheelchair umbrella to help keep Ethan in the shade while we are out. This is great and if you look around you can find them to be UV protected and also to be a umbrella for in the rainy times too. You can also buy umbrella attachments to go on the wheelchair if you already have a suitable parasol or umbrella to attach.

Water Play

We love water play of all types in the garden or inside. Popping feet in will help cool down and its great fun too! Playing with ice cubes is also a great activity to help keep you cool, and you can make them in all different shapes too!

Handheld Fans

Handheld fans are great to hold when you’re out for that Instant quick relief. Blowing the cold air onto wet areas will help too. Having to wear splints and be in equipment all day can get sweaty, so this is a nice treat for after you take them off to quickly cool the feet while you are out.

“With this level of brain injury, children often don’t develop past 6 months.” our neurologist explained when we were called into a conference to discuss Sawyer’s infantile spasms.

She was surprised that not a single doctor in the NICU had wanted to explain to us what his brain injury meant. It was all very vague and “we don’t know” “some sort of cerebral palsy.” It wasn’t until our we met with a new neurologist that she explained what his brain injury meant. I understand now why they were so vague.

Hope is easy to lose and hard to gain. It is something inside us, a feeling, of trust that something will happen. As a parent or caregiver of a child with special needs science is what drives many decisions, but hope isn’t something that can be measured.

When a parent’s hope for their child is taken at such a young age it can so easily change the outcome of their lives. If a parent is told their child will never walk, will they fight every day to change the outcome or will they accept it? There is no wrong or right answer because parents of special needs children each have their own unique journey.

The same neurologist that told us the outcome of his brain injury was the same one that said, “Research shows that if a child can roll from back to belly by the time they are four, then they will walk someday.” Just after Sawyer’s fourth birthday he did just that.

He surprised us and rolled from his back to his belly all on his own! We were so excited to see him hit this milestone. He has consistently amazed us with his perseverance and willingness to keep trying. This year alone he has tackled riding his trike independently, driving his own jeep, taking consistent steps in his kid walk and even spinning himself in his kid walk to roll down the driveway.

Hope is a wonderful feeling that we are so fortunate to feel. It helps us achieve more and get through tough times. We have seen first-hand how continuing to have hope can have a positive outcome in our child’s life. Continue to Hope and continue to smile, because they are some of the only things we can control.

Isla is in the second to last year at her school. She attends a satellite class within a local primary school.

We started off with mainstream schooling while we fought for funding to get her into the environment that suited her best. Once there she has flourished and although I would have liked to see some more inclusion at times, her years at school so far have been happy. Knowing she is in a class that meets all her needs really takes the pressure off as a parent.

We are now looking at options and need to make decisions about how the next 5 years of her schooling will look at Secondary School. I always thought once we were at this stage, she would be ready for more and it would be a good idea to push her to new limits to prepare her for the real world and be part of the Community.

However, the closer we get to this time of transition the more the I realise the real world does not apply for her and probably never will. I don’t see the point in exposing her to a life of anxiety and overwhelm.

The romantic idea of her fellow students embracing her for who she is and her fitting in in her own way has worn off over the years. Teenagers are not as accepting and nurturing as 5-year olds and there is also the fear of being bullied, ridiculed and not understood.

It is not realistic and is not actually what Isla wants anyway.

Her Community are her friends in her class that she has had since she started school. Along with family, this is all that matters to her.

Fortunately for us there is a new Satellite Class being built at a Secondary School next door to us. She can easily walk to school via our back gate.

There has been a real shortage of options for teens and this project has taken years to get off the ground. With everything going to plan this will be ready for Isla when she is ready to make her move.

Hopefully Isla will get the best of both worlds here.  I am really hoping she will gain opportunities to integrate a little into a mainstream setting and gain social awareness. In return I hope students and families in the broader school community will benefit by becoming aware of and accepting towards difference and diversity in their society.

 

Have you ever wondered what your child is learning from you? I don’t mean concrete things like speech, numbers, spelling and such like.

I mean attitude.

I wondered so many times when my children were little what my son and daughter were picking up from me about how I viewed them and their disabilities. Was I inadvertently teaching them they were to be pitied, be looked down on, have no control over their lives and be seen as less because of the stream of therapist that came through the house and the volume of appointments I took them to? Was the fact I advocated so much to get their needs met making them feel a burden to me and to society? Was the fact they needed communication cards, wheelchairs and standing frames making them feel a target and too different to their peers?

I worried about these things because I didn’t want my children growing up feeling that their disabilities were something to be ashamed of. I wanted them to feel worthy, special and every bit as wonderful as anyone else.

My son has turned out exactly like that, but not because of anything I have taught him, more because his significant learning disabilities mean he confident being exactly who he is. He isn’t aware he’s different or disabled and just loves life in all its fullness.

But for my daughter, whose cognitive ability meant she could successfully attend the local mainstream school, finding that confidence in who you are when you have a string of diagnosis is such a difficult thing to achieve.

But at 11 she’s confident in who she is, aware of her own ‘medical issues’ as she calls them and sees the positive in it all.

She doesn’t see her autism as an issue, but rather something to be proud of. She credits her autism with the fact she’s the neatest writer in the class (‘because autism means I concentrate on things fully and put my all into it’ she says), she says it helps her obey the rules of class and understand maths easily. She isn’t upset at her own difficulties understanding social situations or struggles to make friends because ‘people should accept me for how I am just like I accept them for how they are.’

She doesn’t see her eating disorder and limited safe foods as a negative. In fact, she says that having the same packed lunch every day at school frees her from the worry of having to choose what to eat from a menu and means she can think of other things instead.

She doesn’t worry that others can do more physical things like jump, skip, catch balls and roll over when she can’t. ‘We are all good at different things and that’s ok’ is her reply to that.

She doesn’t let her communication difficulties hold her back either. As a selective mute she doesn’t speak in school at all yet when asked about this she smiles and says confidently to me, ‘At least I know when the teacher tells the class to be quiet, I know I wasn’t to blame for the noise!’ She also says she’s not too worried about not being able to talk in class because it means the teacher won’t ask her to say answers when she doesn’t know them!

So, I asked her if she feels different. She laughed and said: ‘Of course I do! Every single one of us is different anyway and that’s what makes us all special.’

I worried that society’s view of disability might have a negative impact on her. I feared having so much time out of school for mental health appointments, weigh ins, therapy and additional support might impact on her mental wellbeing and confidence.

It is possible for a child to grow up disabled with a positive attitude and self-image?

It is possible because my own daughter is proving that.

I made a conscious effort to not talk about her eating disorder, her neurological condition, her developmental delays and her physical struggles in such a way that she would view herself and her disabilities as something to be ashamed of or embarrassed about. She’ll get that enough from others sadly.

My job now is to help her keep this positive self-image as she negotiated teenage and adult life as a disabled young person who continues to see herself as someone of worth regardless how others see her.

She’s a girl who loves herself and her own uniqueness.

Everyday when I wonder what she’s learning from me I realise that it’s actually me learning from her.

I constantly seek comedy. It’s a great way to pretend for a moment that the world is a happy and fun place.

I recently saw a meme that kind of stuck in my head. It said “when life gives you lemons, you make lemonade. But what if life gives you onions? I don’t like onionade.”

It made me laugh but also it was strangely profound to me. You see lately, I feel like I complain too much. I let things accumulate and get to me. I get upset over things I can’t control. I can’t control my child’s behaviour. I can’t get more sleep. I can’t stop seizures. I feel like I am having a constant mental battle to pretend that so much of all of this is okay when actually it causes us all a lot of grief. None of this is anyone’s fault.

I remind myself over and over that this is our life now, you have no choice but to accept it. Sure, I can research new medications, get involved on forums and so on. But there is only so much I can do. But sometimes life keeps on giving me onions.

I feel that amongst my peer group, and in our community in general – mental health has taken a bit of a nosedive. With the pandemic it was inevitable.

There are many of us that pre corona, were just about getting through to bedtime each day. But then the rug was pulled from under us and we are suddenly surviving in isolation without any proper respite services. Routine is out of the window. I used to complain that some days even popping out to get milk was a mammoth task – in this current situation that’s even more the case now.

This month I wanted to write a positive and uplifting blog. I wanted to try and make everyone feel hopeful and that amidst all of this chaos we will actually overcome it and life will become normal again – whatever normal looks like to each of us.

But for some reason, a few of my closest friends have had some exceptionally terrible things happen and all I’ve been able to do is dwell on how unfair it all is. Unfair that people have to suffer, unfair that our children need to undergo horrible procedures in order to stay alive or have quality of life. It’s easy to get sucked in. I’m like an emotional sponge – I soak in all that is happening around me and absorb it. Until the weight of the sponge is so heavy I can’t move.

It isn’t something you can just shake off. I think it’s something you learn to grapple with as you get older, wiser and more experienced. I’ve been too low to even have my phone counselling sessions (mainly because I find being on the phone hard and much prefer face to face – again, the pandemic forcing it’s way in and disrupting us).

Often when down, I will turn to social media. Cute dog videos, funny cats, silly existential memes (that probably cause concern to various folks who don’t get my humour!). The problem with social media is the constant barrage of political posts and news articles.

In normal life, I would find myself contacting organisations campaigning for accessible changing places facilities to be installed. I’d be signing petitions for more recognition of parent carers. I’d be trying to change the world in my own little way. I bounce between “I’m only one person, I can’t change the world” to “I might not be able to change the world, but if I can change it for one person then I’ve done my job”.

Lately those feelings have diminished and I find myself thinking “wow, if people can’t even have a socially distanced trip to the beach without taking their rubbish home, what chance do we have in making the world a better place for our children with disabilities”. I find myself getting so angry about it. How can people have the gaul to visit a beauty spot and leave it in a mess?! If they could bring the stuff with them surely they can leave with it too until they find a place to dispose of it? I felt sick seeing some of the pictures of packed beaches. Or the waste left behind from illegal raves in our area.

An important person in my life once said to me “you are wasting precious energy resources on things that you can’t fix”. It’s hard to choose where your energy goes. But she was right. And it would account for the feelings of exhaustion, fatigue, sadness, general lethargy that I feel at the moment.

So, I know this post hasn’t been the uplifting morale boost I was hoping to deliver, but I thought I could offer a few little pointers that hopefully I can listen to as well.

You might feel trapped and isolated. Reach out. There are others like you and you are not alone.

Things will get better. You might feel hopeless. But there’s always hope. Cheesy as it sounds. We will hopefully look back on this a year from now and be so much more grateful for those simple things we have missed.

You are not your situation. You may face some pretty distressing daily challenges that would leave anyone reeling. Remember that you are a person too, with interests, and hobbies and likes. It’s easier said than done but if you can catch any moment to stop being selfless, then grab it. These little nuggets of sanity will hopefully restore you and remind you that you are more than mum, dad, carer, whatever.

The world is indeed an awful place at times, where inexplicably unfair things happen all of the time. Be there for others, just sit with them in their grief, be present and listen.

Think every day about what you are grateful for. Sometimes it can feel like groundhog day but I like to remember that first coffee of the day, that evening cuddle with the dog, every smile my daughter gives us.

I find myself in any spare moment wanting to get back into bed. I am aware this is a dangerous path so am trying my best to keep active.

When life gives you onions. You don’t have to have onionade. Maybe look up a cool new chilli recipe. There’s more you can do with what life throws at you and whilst it may temporarily knock you down, you’ll figure out what to do with it and what works for you. And if anything else – this post includes a photo of an alpaca, and how great are they!?