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.

Pressure is something you find in all walks of life. It is something I put on myself all the time.

Pressure to be the best mummy, the best wife, the best daughter and the best friend.

Being a special needs mummy comes with extra amounts of pressure. Ethan has a huge amount of therapies that he needs to help him. Whilst he’s constantly with me at the moment, all of this falls to me. I have put so much pressure on myself to give him the same input he would get at school. It’s not the right attitude and I’ve had to adjust my way of thinking. Here are my tips to make sure you’re easing the pressure on yourself to be at your best all the time.

Perfection isn’t possible. You can strive to be perfect, but you won’t ever be perfect at everything.

Realistic, be realistic in the goals you set for yourself and those around you. I used to get disheartened when Ethan didn’t reach the goals that were set for him. It took me a while to persuade those working with him to provide goals that would encourage him to work towards small achievements. I know him better than anyone, so I know what to set as realistic goals to ensure he really gets the best out of his development.

Be realistic in how much you can achieve in one day. Don’t set yourself up to fail by giving yourself too much to handle in one day.

Expectations need to be lowered. By lowering your expectations your life becomes more manageable. You will be disappointed less and you will be able to celebrate all these milestones your child does reach. This doesn’t mean you need to have low to no expectations but don’t set them too high.

Stop and listen to what your body is telling you. I suffer badly with migraines. Putting pressure and exerting myself all the time means I suffer worse with headaches. It’s so important to put yourself first as well. Also, listen to your child and see when they need time out as well and time to adjust to new situations. Behaviour can change during different situations and it’s important to take note of this too.

Self-care is important. This is like the relaxation but can also be done in different ways. Try treating yourself to a nice bath, reading a book instead of watching television. Try some meditation to ease stress or getting exercise and fresh air.

United together is so important. Working with people rather than against each other will take the pressure off yourself. Allow people to help you and asking for help will greatly remove pressure. This is something I’m not great at and I definitely need to practice more. We have a team around us and working with them really helps when there’s something in particular that we need.

Relaxation is incredibly important. Your body and mind need to recoup ready for the next challenge. Please ensure you are giving yourself enough rest time as well as allowing your child that time to relax too.

Encourage yourself and your child at all points of your journey. Encouraging yourself will allow you to feel happier and more relaxed with everything. Encouraging others really helps self-esteem and will help you to work well with others too.

I hope this helps a little to ease the pressure you put on yourselves. Keep smiling and remember you’re doing a great job.

 

It’s taken an awful long time to get to a place I can write this blog post. Even now I’m assuring myself that everything is OK and that these techniques are a good substitute.

You see my child, Ethan, cannot do a lot by himself if anything really. He doesn’t have the strength or muscles to hold himself in any position without equipment.

Ethan is now 9 and it’s taken me this long to realise that he doesn’t constantly need to be doing things or activities. He needs to have down time too and learn to explore the world around him in his own way. Having two other children means I can’t give Ethan constant activities and there needs to be times where he needs to explore on his own as well.

There is a huge guilt that when I use the activities I’m going to share with you that I should be doing more in those moments but in reality in the moments I’m ensuring Ethan has a cooked meal full of nutrients that he needs to stay well or I’m washing and drying his clothes, booking appointments, cleaning the floor so we can love his chair through or attending to my basic needs so that I can continue to care for him.

These activities provide Ethan with essential down time and skills he needs to acquire but through other means and not me.

Light show

We set up a light show with lights on the ceiling, fibre optics to touch or scarves and bells on his hands. We use flashing toys placed around the room to keep him focusing. This gives him the chance to track and fixate on lights and use touch to touch the lights.

I also play him classical music at the same time which is calming for the brain.

Audio stories

Audio stories are a great way for Ethan to practice listening and hearing to spoken language. This can be teamed with objects relating to the story either around him to fixate on or on his tray to touch.

Scarves

We tie scarves or material around Ethans hands. He is unable to hold anything for more than a few seconds, so this allows him to not drop the object. Scarves and material are different textures for touch awareness. Having things in his hands encourages him to move his arms around and follow his hands showing cause and effect. Tangle toys are also great for this or pipe cleaners which bend easily.

Feet

If Ethan is having a kick on the floor, I put toys near his feet. Anything that makes a noise when kicked is great. The bell chime about is great for this but any toys that can be activated by touch will work. Great for working on cause and effect even if the movements weren’t purposeful.

Mobiles

Hanging mobiles are great hanging from the ceiling hoist track if you have one or curtain pole. These can be bright and stimulating. Ethan loves to move his arms in amongst the mobile. We have a mobile with ribbons hanging all around it but you can use anything you have. Maybe even attach it onto a washing sock holder!

I think as a mum it can often be very easy to point out your shortcomings, your failures and the times you just plain got it wrong.

Being a mother is not an easy job.

There are days when you question your every movement or word you utter, including those uttered under your breath.

There are days when you cry into your cup of tea and wonder what a hot drink tastes like without tears and snot in it! It’s incredibly rewarding but you have to go through a lot to get to that point.

I won’t lie, becoming a mum of 2/3 has been incredibly hard. The first year with Florrie and Ethan was one I wasn’t sure what I was doing and one I wasn’t sure would ever end.

Having a child with complex needs is like having a baby in a 9 year olds body. Chuck in 9 years of no sleep, hospital appointments, physio, medical emergencies and seizures, then add in a newborn baby, yeah things got tough at times.

People often say the newborn stage is the hardest. I’m not sure I entirely agree with this but that’s one for another day.

I was incredibly blessed to have an amazing baby. One who fed well and slept well.

Don’t get me wrong there were times nothing would settle her but on the whole she was a great baby.

The baby completely relies on you for their every need. They are fully dependent on you.

Ethan is still like this newborn stage at the age of nine.

The hardest thing I found having the two of them was if they both needed seeing to at the same time.

I’ve become an expert at one hand tube feeds whilst holding a baby in the other arm with a bottle. Add in number 3 and I then have no idea which one to go to first.

It kind of feels like whoever shouts the loudest gets sorted first. Inevitably one of them will always have to wait.

I’ve spent a lot of time conquering having 2 and then 3 children during the holidays or at weekends on my own due to Steve working.

It’s taken about 18 months but I think I finally have it down to an art. It’s not been an easy road, it’s pushed me mentally and physically to my limits at times.

I think it’s time to finally look back and celebrate just how far I’ve come as a mother over this time.

I have always wanted to be a mum. There are times now where I question why that has always been my dream.

Days that have broken me. Its easy to focus on that. What’s not easy is to celebrate the days that went well, the days where everyone came out smiling and I’m reminded just how far we’ve come.

The days where I am reminded just how amazing being a mother is. The days where I am incredibly bless to have 3 beautiful children.

So, this is a post to say to you all, mum’s, dad’s, carers, grandparents etc celebrate how far you’ve come, forget the bad days and focus on just how great a job you really are doing.

From one exhausted parent to another well done!

Watching your newborn baby make movements he can’t control and you can’t stop is soul destroying. Watching as his little body shook and his eyes flickered broke me.

I will never be the same again because watching my child seize has forever changed me.

I feel like I am in a heavy abusive relationship with epilepsy.

One that I really don’t want to be in. One that makes me so mad and angry.

It makes me cry and feel helpless. It has taken many of our special days and tarnished them with its ugly being.

Robbing my child of his childhood. Taking away skills that he’s learnt.

Epilepsy is the person I wish I’d never met. One that I wish hadn’t come to our party. It makes me sick with worry about what it will do next.

How it will appear and the effects it will have for the future. Its a dark being that just lurks in the corner waiting to arrive when it’s not been invited.

It has timing that is really bad. It lasts for minutes but it’s effects last forever.

It comes at any time of day and it turns up sometimes unannounced. Some days it sends a warning that it’s coming, like nasty letters coming through the door.

It’s kept us house and bed bound for so many days. It tells us we can’t go to things we have planned and it makes us fear those times when it does allow us to go out.

It is constantly there, poking over our shoulder, waiting to attack at any minute.

Every single day it pops up and spends some time with us. It’s very rare it leaves for a day at all. It hardly ever goes on holiday leaving us for a nice break.

It sometimes works part time and has calming periods but then it comes back fighting and ready to cause a stink.

It really does suck having epilepsy a part of our everyday life.

If I could take anything away from Ethan it would be that. I would allow him to have no times where he was scared, his body moving without his control, his memory being wiped, his head building up and essential exploding.

I will never give up hope that I may be able to make epilepsy leave. But I guess for now we’re keep throwing things at it and hope it leaves the party soon.

My parenting style for my 3 children is so different.

I know this is the same for every parent with children different ages, but for me with Ethan at the age of 9 my parenting style hasn’t really developed or changed a lot.

Firstly they are all different ages and stages but more importantly they can all achieve different things.

From the outside it might look like I’m harder on the girls than I am Ethan.

Ethan can’t answer me back or pull things out of a cupboard.

I’ve written before how when people moan that their child is into everything and how they wish they wouldn’t and there’s me over here wishing he would be in the DVD cabinet pulling them all out!

On a daily basis I have to do this for Florrie and yes it’s frustrating and time consuming but I love that she can do this.

I secretly love that I find a toy in my bed now or accidently step on one when I head to the bathroom in the middle of the night.

I have to teach the girls boundaries and rules. So that means reminding them, lots, that they need to not throw their toys or they need to use their manners.

I don’t need to do this with Ethan. He can’t get up to mischief and shout at me when I ask him to do something. Dakota always finds it annoying that Eth never has to tidy up.

But he doesn’t have to because toys are brought to him, not him getting them out!

Ethan doesn’t get my annoyed voice very often because he can’t be naughty. I mean he is very cheeky but he’s not drawing all over the walls.

I’m saying I always stay calm because sometimes he is so moany I have to use my stern voice at times to try snap him out of it.

My interactions with Ethan are more calm and are all pretty much one sided.

He occasionally babbles back to me in response. He responds with facial expressions so I guess what he’s thinking.

I know him inside and out but it’s still a massive guessing game when he wants something.

The girls are easy to know what’s up. They are both at an age now where they can tell where hurts or if they are hungry (in Dakotas case she’s always hungry!).

So the girls needs are met easier and quicker due to them making more noise. Ethan is very placid, mostly, and he doesn’t demand my attention as much as the girls.

The girls can get into situations where they need catching or saving quickly. So I go to them a lot.

Poor Ethan has been left on one side of the garden centre while I run after Florrie on multiple occasions.

Playing with each of my children is totally different.

The girls can play back with me. Dakota can have full conversations and extend play which makes role play and games more fun. Florrie’s attention span is lower so games are often quicker but she still plays back with me.

I find the easiest things to do with Ethan are messy activities or activities which don’t need words to extend play. He loves stories and looking at lights.

It means I can interact on a completely different level with him.

Just because I have to interact and parent my 3 children differently doesn’t mean I love each of my children any differently.

All 3 get my best and worst at times.

I hope that others can see that I’m trying my best and adapting to each child’s needs the best I can.

This year its not just happy new year but a happy new decade.

This means in 2020 my gorgeous boy turns 10.

What a massive achievement for someone with a life limiting disorder.

He has defied so many odds and many dark periods. Yet he’s still here smiling away.

This year will hold lots of special celebrations for my boy. I wanted to celebrate it with a big party with everyone he knows surrounded around him.

Then I remembered he’s often overwhelmed by these situations that maybe that’s not the best idea at all!

I decided to have a search and see what things a ten year old does for their birthday.

Well that was a silly idea and It took me to nerf gun parties, gaming related parties or sports related parties.

Now Ethan loves watching a nerf war but can’t join in on his own, he doesn’t game at all and he may love watching a footy match but he wouldn’t have a party themed around it.

So I went back to things he does love. Ethan loves CBeebies, Toy Story, sensory play, Frozen and dinosaurs.

He’s had two dinosaur parties, a farm party, a sensory party with lights and messy play, a music party where we made instruments, a troll party, a big red car party and a Toy Story party.

All things he loves so what this year!

I want to make this year extra special because you only turn 10 once and its a big deal turning double digits.

Inviting his friends from school gets hard each year because they all have sensory issues and like him don’t like lots of people either.

We stick to his cousins and close friends children.

As his cousins get older though its hard to find things that they will enjoy coming to still. I mean they are all very good and will always do things with him to celebrate.

But wouldn’t it be lovely if they could all enjoy it on the same level.

We could go out and do something like bowling which he loves, or swimming or seeing animals. But all this could go wrong if it’s too loud or crowded.

Being at home gives him that safe environment and space to escape if he needs it. So a celebration at home will suit him best.

We will do a day out just the 5 of us with less pressure for it to be amazing.

Ethan loves birthdays. He loves balloons, singing happy birthday, opening presents, hearing the words inside cards and definetly eating lots of birthday cake!

So although his birthday celebrations may be different than other 10 year olds.

He will have a birthday that is perfect for him. That allows him to enjoy his celebrations in the way that makes him happy.

Looking back over the year its always nice to focus on all the positive things the year has brought us.

We have ticked off some lovely experiences on Ethans bucket list.

Feeding a giraffe at Noahs ark zoo farm and being a zoo keeper for the day. Ethan loved nearly all the animals. Just not the snake!

So funny to see him telling us he didn’t like it. Great communication from him.

He also enjoyed a visit from his favourite Disney princess Elsa. He has loved Elsa since she came into the cinemas. His face was an absolute picture when she was singing to him, he even held her hand.

We managed a successful night away as a family. Ethan actually was the best sleeper and wasn’t happy when his sisters woke him up for a change.

We also enjoyed a break away together as a family of 5 at the hospice. We had fun just being away from home for 5 days, experiencing the zoo keeper experience together and meeting Elsa.

Seizures have remained around but we have had a few periods this year which have been slightly quieter which is a slight improvement.

His VNS vamp ups have been consistent in helping to keep him needing less midazolam. Only had a handful of times which have needed a second dose of midazolam this year.

We enjoyed taking our Cbeebies mad son to Cbeebies land. Our tickets were gifted from Merlins wand and it allowed us to be able to have fun riding in Postman Pats van, riding down the Night Garden River and flying around with the Go Jetters.

Ethan loved being able to go on the rides and experiencing his first proper try at rides. A day we will never forget where he smiled and laughed all day.

We have had a lot of lovely days out together at National Trust properties. Taking part in the Wallace and gromit trail and seeing the model from the film.

Ethan moved to a new class in September and has been a lot more settled at school.

He has been enjoying two swims a week which really helps his muscles.

Lots of time on the mechanical horse, rebound therapy and choice making. His school play was lovely as always.

We were able to purchase the eye gaze equipment for Ethan thanks mostly to Ethan’s auntie for walking the 3 Peaks for him.

This has been so fun to watch how clever he is with it and he also laughs at all of us when we can’t do it.

This will provide and exciting opportunity for Ethan going forward to allow him to communicate more successfully with us.

As always Ethan has worked hard with his physiotherapy. He has been working on bringing his arms to the midline and successfully eye pointing wants.

This is going well. Ethan got a new standing frame which will be great for his legs and overall strength. We are hoping to get him back in his walking frame next year.

Another year of amazing strength and determination from Ethan.

A year of lots of memory making and spending time enjoying life.

Let’s focus on the positives and not the negatives.

Christmas is just around the corner. It’s my favourite time of year.

It’s full of cosy nights in, lights everywhere, people spending time with family, eating lots of food and gift exchanges happening.

Christmas is a time we celebrate those around us. Ethan is the same as me and absolutely loves Christmas too. His face lights up when he sees Christmas lights strung all around the house.

The smell of yummy treats in the kitchen excites him so much.

Each Christmas when we’re all celebrating I can’t help but wonder if this will be the last with my precious boy.

Lots of people ask me why I do all the lovely things with Ethan, the simple answer is that I don’t want to have any regrets.

We pack so much into our days because I want to know that I’ve given Ethan all the experiences I can.

This year will be filled with lots of messy play activities. Peppermint smelling playdough, baking yummy cookies, visits to see Santa, sensory stories and Christmas movies snuggled under blankets.

We will make every memory we can.

Let’s not forget though that caring for a child with a life limiting disorder never stops.

There will be medicines to give, syringes to wash, seizures to tend to, illness to keep away from, pads to change and appointments to attend.

Our Christmas will be adapted to fit around Ethan routine and will allow him to enjoy Christmas just like us.

He will have blended Christmas Dinner and enjoy unwrapping all the carefully selected sensory toys he has been given.

We will be trying to keep out of hospital and hope that Ethan stays well and doesn’t get overwhelmed by the whole festive period.

It’s a big sensory ball of fun but can also be too much sometimes. Juggling this can be tricky but hopefully will be manageable.

Putting aside my fears and worries for another day and living in the moment is the best way to enjoy Christmas together.

I am incredibly thankful that I get to celebrate Ethans 10th Christmas with him.

I pray its not the last.