In the last few weeks we had two big losses in our family.

Ethans great grandma on my side and his grandma on my husbands side.

We have no idea of Ethans understanding on death and loss.

We included Ethan in the chats we had with the girls.

We read a lovely story about a grandpa who dies and how the little girl is sad and misses him.

They make pictures and remember memories spent with him.

We then told them about my grandma and how poorly their grandma was.

When their grandma passed away we spoke again about the book but didn’t read it this time.

Ethan fell asleep during this conversation so I’m not sure what he understood if anything.

We have spoken to him again since as we remember Grandma and all the special times we shared with her.

When people who are close to Ethan go on holiday or don’t see him for a period of time he notices that.

When they return he will ignore the person and make them work really hard to regain his smiles!

We’ve explained where the person is and when they return he sees them again.

When someone dies he obviously won’t get that return to then see them again.

Does he just think they are away and will be back soon or does he realise he won’t see them again?

The answer to this is that I really don’t know what he understands.

We’ve been outside to look for Grandma in the stars, lit a candle and talked about  memories together.

We all spoke of Ethans memories and we’ve shared photos too.

He’s really been included in the process but I have no idea whether he understands.

Ethan has different emotion reactions to his own feelings but how far this understanding goes I’m not sure.

He also picks up on when we are feeling different emotions and is very intuitive of that even if he doesn’t understand the reasons why.

We are going to explore some more books about feelings as this is the only way I feel I can give him the tools to maybe understand.

We will continue to include Ethan in all our talks about loss and death and adapt to his level.

For books we use on this journey head to our Instagram livingwithmyhero. 

This time of year always brings about reflection.

As the new year begins we think about all that happened in the last year.

However this year its all so different but I can honestly say it wasn’t our worst year ever.

There have been so many years worse than this one, which is saying something.

We have all managed to keep really well and hospital visits have been a real minimum.

This time of year always brings back memories of Ethans first Christmas.

A year where he was incredibly poorly.

We managed to keep him home by the skin of our teeth.

He was seen in hospital on Christmas eve and when they said we can do the same care for him at home as they could there, I practically ran out of the hospital!

Unfortunately it was a day of back to back seizures for Ethan and sleeping in between.

He was pale and so poorly. He was only 6 months old.

I remember when I was pregnant thinking maybe he would be sitting up around the Christmas tree or maybe on the move trying to pull the tree down.

The reality though was that none of that happened and it still hasn’t to this day.

I remember putting his Christmas outfit on and his 1st Christmas bib and having to take it off a couple of hours later because he was so poorly that he just needed to be comfy.

He ate his first Christmas dinner the next day and he barely opened presents with us, he just slept on the sofa.

The feelings of that 1st Christmas together will never go away.

The effects of that Christmas will never go away either.

The amount of seizures his poor body endured meant that small milestones that he’d reached were ripped from him.

His smile being the biggest one of those.

It was another 9 months before he looked me in the eyes and smiled again.

Those months were hard and I never knew if he was happy or not 

This year I am incredibly happy and thankful to have spent a wonderful time together even under weird, new circumstances. 

Growing up me and my brother fought like cat and dog! But in amongst that I knew I had a friend for life.

We laughed, we played, we pretended and above all we experienced life together.

I can now say that we don’t argue anymore, although he still knows how to wind me up and which buttons to push!

We stopped arguing as much when we got a little sister, who’s much younger than us both!

I have so many memories of growing up together.

We spent much of our childhood being kids! That’s the way it should be.

We had to grow up a fair bit when our mums epilepsy got worse.

We stepped in to help with our younger sister a lot.

Our mum couldn’t drive then but we never missed out.

We truly had a childhood that was so wonderful even if we took it for granted at the time.

We are all worrying that our children will be affected by the isolation and the long periods at home, but I like to think that they are getting something more than any other generation will get to have.

They are having time at home to explore, to be children, time to learn through play and time to learn important life skills.

Having Ethan home brings many challenges but at the end of the day all he really needs is attention and love.

I put so much pressure on myself to fulfil his physio plans to the T along with all the sides of development too, but what we really all need to do is just get by.

No pressure and just let the children be children.

Our childhood was so much fun.

We didn’t have the most expensive toys going or all the named brands, yet we were still super happy.

We made our own fun and now is the time to do that again. Time to take it back to basics and learn from our children.

Spending more time at home together has given Florrie and Ethan more time to play with each other.

To really get to know each other.

Florrie has a much bigger understanding of Ethans needs and the care that he needs.

This bond would have taken much longer to form had they not spent as much time together.

I hope that going forward they can have a special relationship just like I do with my siblings. 

Ethan was diagnosed with his genetic disorder in 2012. I remember the day like it was yesterday.

The diagnosis came in a letter. As I read that they had found a change in the gene I immediately wanted to know more.

So I did what we do nowadays and went onto Google!

When I typed in ARX I was expecting a list of signs and symptoms to come up. Something that would describe my child.

I wanted to be able to relate to something that would give me some idea of what the future would hold for Ethan.

I waited for the results to pop up. A couple popped up. One was a coding site which was all genetic codes, I couldn’t understand any of it.

The 2nd one was a page about the genetic disorder but had one paragraph which described the genetic make up.

That was it. There was nothing that gave me anything to relate to.

I was left with hundreds of questions and a date for 2 months time with the geneticist.

I was desperate to have more, to find out if my 2 year old child would ever be able to do anything.

So a year later I decided to start writing and documenting our journey.

I didn’t want others with the same diagnosis to go through what I had.

I had searched and waited for 2 years for some kind of answer to explain Ethans development delay and his seizures, then I received a letter with the answer but no actual answers.

Writing has allowed me to be able to express what we go through, things that help along the way and it gives me an emotional outlet as well.

It has given me so much support and a way to digest the fullness of having a disabled child.

Writing has brought me lots of support from people who are in similar positions.

It has also allowed friendships with those whose children have the same condition as Ethan.

I’m glad I started writing because it’s helped me and others as well.

Creating celebrations that include everyone really isn’t that hard. I have 3 children, all different ages and all different development stages. Creating fun experiences for them all to enjoy on different levels takes a bit of planning but is totally doable. Here are some of our adaptable Halloween ideas:

Baking

All 3 of mine love baking. It encourages turn taking and waiting, mixing and maths with the weighing.

Each child can take on a bit that is accessible to them. The girls can pour ingredients in easier than Ethan so he enjoys doing to mixing, especially with the electric whisk. We are awaiting his new switch adaptor which means he can also turn the appliance on aswell.

Sensory play

I have 2 that love to get messy and one wh sti isn’t sure. So we do a mixture of wet and dry sensory play. Halloween play ideas which are particularly good are dry bow tie pasta shapes to pretend they are bat’s, you can also colour with paint or food colouring, slime or jelly for a really messy time, adding in eyeballs or bugs, coloured cooked spaghetti or black glittery playdough.

Scavenger hunt

We are going to do a Halloween themed scavenger hunt around our garden and driveway finding Halloween themed pictures. For them all I will have a little check list to cross off when then find them. For Ethan I will print of extra picture cards and he can, with help, place one of them onto the grid. He can also use the small pictures to help him find the bigger pictures.

Disco

We will pop some music on, dim the lights, grab some glow sticks and dance to some spooky songs. You could even make shadow shapes on the wall using a torch.

Pumpkins

Carving the pumpkin is such a great sensory experience. Getting hands in to scoop out and feel the seeds and guts is great for hand skills. Smelling the pumpkin is also great for the senses. Little to no pen control can also be used to colour over a stencil which won’t need any cutting out.

Acceptance is something you have to get used to using when you’re a special needs parent.

Sometimes it’s acceptance of good things and sometimes it’s acceptance for things you can’t control and you just accept that it happens to your family.

I can still remember when Ethan got his first wheelchair. He’d been in just a normal pushchair until then but it wasn’t supportive enough and he needed help with his posture. I went to that appointment thinking maybe he will just get a pushchair that’s more supportive.

I can clearly recall that I didn’t want him to have a chair that made him stand out. People already looked at the child who didn’t walk or talk. When they showed me the rigid wheelchair that he would have, that was big and bulky, it was exactly what I didn’t want him to have.

After an extensive assessment I realised just how disabled my child was.

He desperately needed the support this wheelchair could provide. I cried. It wasn’t what I wanted. It was a real wheelchair. It would stand out and everyone would stare.

After a hug from the physiotherapist I then ACCEPTED that things were different but it’s OK. This was the start of me accepting how disabled Ethan was and how much help and support he would need for the rest of his life.

Ethan is now going back to that first wheelchair style that he ever had. This time I feel OK! Infact I pushed for it. It’s weird that as time goes on you accept that it doesn’t matter what people think. It doesn’t matter who stares, people will stare whether there’s a wheelchair or not.

All that matters is that Ethan is comfortable and he’s having the best wheelchair for his body and posture. I’ve also let Ethan have full reign on the colour he wants! I always give Ethan a choice and he always chooses pink or purple!

I always talk him into choosing a different colour. One he won’t stand out with. This time I thought, no why shouldn’t he have a purple wheelchair, so he is! Without fail he chose a purple chair! He was so happy!

So here’s to acceptance of my gorgeous boy. People can stare all they like and I will be showing off just how gorgeous my 10 year old is!

Social media can either be my best friend or my worst enemy.

Looking through old memories can bring back so many lovely times and show just how far Ethan has come, or it can show skills that Ethan used to have and now doesn’t.

Life is so rocky here, you never know what you’re going to get dealt next. We live life a day at a time and treasure every moment, but it’s heart breaking to see Ethan loose so many skills that we spent hours encouraging him to gain. Every little milestone is celebrated and it’s always so exciting to see Ethan exploring his body and using it in new ways. I’m always mindful that the new skills won’t stay with us long. Some skills do, but a lot over time fade away.

Over the last 6 months I have found social media both a challenge and an encouraging place.

It has given me support through such a hard time, knowing people who are in the same boat as us providing that level of understanding that you both just have and  know how hard things are.

I’ve also struggled with seeing the development of all our gorgeous friends’ children. Having time to blossom and learn new skills is so encouraging to see, but it also brings back painful memories of the skills Ethan learnt but now doesn’t have any more. This is something we face on a daily basis. There’s no explanation of what causes these regressions in skills, but I’m pretty sure it’s due to his memory which has been affected due to his seizures.

I’ve always kept a positive spin on everything I post about Ethan, because that’s how we are with him. However it’s hard to always remain positive about everything when your child faces so many barriers and battles to achieve all the small things.

We will always rejoice in everyone’s achievements around us because we know, that just like us, they are also worrying about these skills disappearing and not lasting. We all stick together and this is the lovely side of social media. All in this together supporting each other no matter what.

Just like our lives, social media is the same, but for the most part it’s good and that’s the way we like it!

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.

 

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.