We went to the Bristol balloon festival recently. We set up our space 2 hours early. We were behind one other group who also had blankets and then there was a couple at the front sat in chairs.

We had a great view of where the balloons were going to be. This was on Ethans bucket list to go to the balloon festival and see the night glow.

About half an hour before it was due to start a couple arrived and stood right in front of the picnic blankets.

Soon people followed suit. The family in front of us stood which blocked all our views. After kindly asking them to move over a bit. They did and apologised.

Within 10 minutes we were surrounded by people standing up. Which resulted in our view in the picture above. We could no longer see anything at all.

Now me Steve and the kids could stand, Ethan and my mother in law who are both in wheelchairs couldn’t stand so therefore couldn’t see.

Not one of those people looked to check whether there was room for them to stand at the front, no regard for anyone who had set up early and certainly no thoughts about those in wheelchairs that cannot stand.

I want to encourage you to ‘think wheelchair’ wherever you are. Especially when you are watching performances of anything.

Tell your friends, teach your children. Spread the word to check where you are and allow those who can’t move to be able to see and enjoy just like you can.

Now unfortunately this is not a one off situation. This happens wherever we go.

Being in a wheelchair or pushchair or anything that stops you from fully seeing what’s going on around you is not unusual. There are lots of people who need different access to situations.

When was the last time you thought about what others can see when you’re out watching something.

Maybe you’re at a carnival, or a show. A talk at a zoo or just simply admiring the animals at an attraction.

Have you ever looked around you and wondered whether your actions or position affects anyone around you.

The answer is probably either never or not recently. This is my job to bring this to your attention. Wouldn’t it be fantastic if we all were included. If we all had access to everything. I am starting a new campaign called “think wheelchair”.

I want to encourage everyone to think whether a wheelchair user can access things around you.

Being in the wide world is not easy as it’s not set up for wheelchair users. Why not help me spread the word and start to change to minds of those around us to thing of others before themselves.

Let’s get everyone involved and allow everyone the chance to experience everything in a level appropriate for them.

Being my friend is hard. I’m often late, I often have to reschedule or when I do turn up I’m tired and lacking enthusiasm.

Being a mum is a tough job. Being a special needs mum is even harder.

I can completely confirm this as I have both children with special needs and children without special needs.

Life with a child with special needs is full on and requires ALL my attention. It also costs us a lot.

Having had to give up my job and career to care for Ethan, means we are on one wage. We know we are very fortunate to be able to manage on one wage with no extra help, but the costs of living for Ethan is not covered by the money he receives from the government or what we can earn.

His needs are far greater than this.

This doesn’t leave me with an awful lot left over to enjoy time with my family let alone with others. It takes its toll when people are out living their lives and want you to join in but you can’t.

My family will always come first and spending my time with them is my main priority.

Having friends that understand this is so totally important. I ask a lot of the people around me, in terms of understanding.

I don’t ask a lot in time as I’m not one to ask for help so conquer this world as our unit mostly. Understanding that although this life chose us, that we wouldn’t have it any other way and it’s not upsetting or a bad life.

Life is full on and overwhelming and although I want to join in with “normal” conversations, sometimes this is incredibly hard for me to be a part of.

I love hearing about your children but it can also may me draw back as I don’t have the same lives others do with their children.

So know that if I’m not my old self all the time, I’m OK I just need time to process everything.

Being my friend means adapting around me. Being aware that we can’t always visit your house due to access or that my child needs their own surroundings.

It’s not that we don’t want to come, it’s because we don’t often have the energy to be able to conquer the world outside our safe space.

I can often read messages quickly and not be able to reply straight away.

This is because I am usually in the middle of sticking to a routine or performing a medical procedure. It doesn’t mean I’m ignoring you or that I don’t value your friendship. It’s hard to keep on top of my own social life when my carer life is 24/7.

I have always been a socialable person and this won’t change. I just have to limit my time now so as to not burn myself out.

You see I’m a very important part of this special needs journey. I am the one that facilitates everything.

Without me Ethans world would be sad and lonely. This is not me being big headed, not at all. Its me being a special needs mum that knows I have to have things together to allow my son to access a life he deserves.

Being my friend is an incredibly hard job. Some will find it easier than others and that’s ok. Know that I value your friendship and if you get contact from me, even in small bits then know you’re very special to me.

I’m sorry I can’t chase our friendship anymore and I know that makes it harder for you, but know that I appreciate every ounce of effort that you have put into keeping our friendship going.

To those that have stuck by me after 9 years of parenting and special needs parenting, thank you.

To those who I have met along the way, a huge thank you for walking in and knowing what I’ve needed.

For those who are there to listen when I need it. For those who help in ways you don’t even know you’re helping. For all your understanding and for most of all for all your friendship.

Please don’t give up on me. I’m not asking for any of our friendships to change.

I love everything the way it is. Just know that I value you all in different ways. I will need different friendships though different parts of my life. So if I don’t include you in all of it, I’m sorry.

It’s sometimes easier to not have to explain everything to everyone all the time. Because time is so short and important over here.

So finally. A massive thank you to each and every friend past and present I’m very lucky to have you.

 

The summer holidays are nearly over.

I absolutely love having Ethan home for the holidays.

Ethan goes to his dad’s every other weekend so when he’s at school we only spend proper time with him every other weekend. So the holidays give us lots of time to spend proper time together.

Don’t get me wrong the holidays are very hard. Having Ethan home all day means helping him as he’s unable to do anything for himself. He needs help for absolutely everything. He can’t do anything unaided. Finding activities he can access while I sort his sisters out is important so he’s not just sat there.

Manual handling during the holiday is no where near as much as it used to be but it is still present. He needs adjusting in his chairs, or rolling and lifting bits of him while changing him. While we’re out Ethan still needs lifting to be changed or to access swings. We’ve tried to do days out with changing places but this doesn’t happen all the time.

Physiotherapy is very full for us and for him. Stretching Ethan and helping him into different positions is hard. You are careful with moving around him but it still takes its toll on you while you are stretching, twisting and bending.

Attending to Ethans medical needs is very time consuming. That along with sorting the girls out with food and getting ready etc I feel like I spend my day doing water feeds, medicines, pad changes and feeding all the children. Fitting in the fun things in between is very hard and it takes a lot of multitasking and prioritising to make this happen.

The holidays have been a real mixed bag for us. We had our first full family respite stay at the hospice. We had a great week making amazing memories together. We had a visit from Elsa to sing to Ethan followed by a trip to the zoo to be a zoo keeper for the day feeding lots of animals. We also managed lots of time with the girls on their own giving them much needed one to one time with us.

Seizures unfortunately haven’t been great over the holidays. We’ve tried not to let them ruin our time together but that’s easier said than done. It really puts a downer on an amazing day when you see your baby boy so poorly and upset from seizures.

Sleep hasn’t been absolutely hurrendous, just all over the place like usual! When Ethans not at school he sleeps worse as he’s not being worked hard all day. I try my best to keep up the level he’s used to but it’s a lot harder with a toddler in the house now too! There have been lots of early mornings and very late nights too!

Usually during the holidays Ethan doesn’t like to relax. He likes to be doing things all the time. This holiday he has been super chilled and has loved being at home and out of the house. We have stuck to his routine and we even managed a pj day without him getting stressed. This is amazing for him and has made things a lot easier this holiday.

All this being said, I still love having Ethan home. All the hard work is definitely worth it. To see that gorgeous smile every time he sees me, to hold his hand whilst he has a seizure, helping him complete his physio or fulfilling all his bucket list things, every minute is precious and I wouldn’t change anything.

In life its rare to have those friendships which last through your life. It’s even harder to make and keep those friendships if you have special needs.

Ethan has no verbal speech. He communicates with us through eye pointing and sounds which indicate whether he’s happy or sad.

Having no speech or movement limits him to creating his own relationships.

Initiating a relationship for Ethan, relies on the other person to make the first move and come to him.

Once that initial point of contact has been made Ethan can gauge whether that person likes him by the level of interaction they have with him. Ethan is very receptive and loves attention.

From a very young age Ethan made his best friend for life! They are 2 months apart and absolutely adore each other.

Freya, who now also is his cousin, is amazing with Ethan. She has always looked after Ethan and most of all includes him in everything she does.

Freya enjoys dressing Ethan up and also his chair to make it all colourful.

She takes him into the room where all the children are playing or outside with lots of toys for him to hold and see.

She enjoys helping Ethan to take part in cooking or helping him walk in his walking frame in the garden.

Freya enjoys feeding Ethan and is now also an expert at giving Ethan his water feeds via his button. Her inquisitiveness ensures she knows everything about Ethan.

She is always interested in why Ethan can’t do things, the way he learns or the things we can do to help Ethan learn and explore.

Freya has been around Ethans seizures since she was a baby. She’s not phased by any of this.

Most 9 year olds would never experience this. Freya has helped swipe Ethans vns and always holds his hand and calms him through them.

She asks questions and understands a little about what is happening when he has them. She is strong and brave but she also worries and can get emotional because she really wants her best friend to be OK.

The comfort and support is my favourite bit of their relationship.

Freya loves to cuddle Ethan and Ethan cuddles and laughs every time he sees Freya.

They have a bond which is unbreakable and I really hope this continues for the rest of their life.

They may be the same age and mostly the same size, (they take it in turns to who’s the tallest!) but developmentally they couldn’t be more different.

This doesn’t affect their friendship and I feel it makes it even more special a bond.

To see Ethan have a special friend who I know will always be there to include him and ensure he’s having a good time and that he doesn’t miss out, is every mums dream.

I am glad that no matter what life throws at Ethan, Freya will always be by his side.

A special girl who sees Ethan as no different.

I for one am very proud to have her as Ethans best friend.

We are now 9 years into our special needs journey. The roller-coaster that never stops. One you want to ride and sometimes it’s great but most of the time you’re so scared but you just got to ride it out.

I have experienced an awful lot of highs and lows and have learnt lots along the way. I thought I would share some of the things I’ve learnt along the way with you.

Please share with me any other ones you have!

Ignorant people

There will be some people that no matter how much you try to get them to understand your situation, they never will. You will adopt a smile and grit your teeth approach for most of the time and the other small bit of the time you will become an angry bear looking for its next feed!

Car sticker

A sticker on the back of your car saying leave 5m for wheelchair access will become invisible and will make no difference! Also those using a disabled bay without a badge will become part of your daily battle too.

Friendships

Although you will loose a lot of your friends, you will actually make a whole new group of incredible friends. Most of whom you won’t actually ever meet you will just talk to them every day on social media.

There really is no support like that of an SEN parent.

Preparation

Being prepared is key. Always be ready for every eventuality. Having emergency bags packed all the time and cupboards stocked and a big diary ready for all the appointments are a must.

Sleep

Sleep becomes a thing of the past. There’s being a parent tired, then there’s being an SEN parent tired. Believe me they are totally different.

You will pull many an all nighter unfortunately without the blaring music, neon lights and alcohol.

You will be mentally physically and emotionally drained constantly.

Cheerleading and boxing

Two sports that don’t go hand in hand normally but in the SEN world do! Boxing gloves and pom poms should be handed out at time of diagnosis!

You will become your child’s biggest cheerleader. We all want our child to do well but you will constantly be cheering them through lifes battles and fighting your way through all the tough times and battles with every single health service to get what is right for your child.

Patience

Patience really is a virtue. You will practice the art of deep breathing multiple times of day. In the same breath you will also be muttering words the English language should not hear!

Times will be trying especially on no sleep but you can do this!

Compassion

You will become the most compassionate, passionate and understanding person. Judging gets noone anywhere. Showing those who are going through troubles that everything will be OK becomes the normality.

Tears

You will cry ALOT!! Happy tears, sad tears and tears you’ve no idea why! I’ve cried into my cereal before and I’ve no idea why! You will cry not only for yourself, but your child and also everyone else  going through the same things.

Medical jargon

You will become an expert in medical jargon and will understand what they are talking about on Ambulance, 24hrs in a&e and Holby city. Medicals words like SATS, tachiacardic, IV, stable, fluctuating, stoma etc become your everyday language.

Doctor

Youre basically a Dr without the degree. Come to think of it you’re also a physiotherapist, occupational therapist, surgeon, manual handling expert, sleep expert, PA…. The list goes on!

Parents know best

You know best about your child. Whether that’s what they need, what they are trying to tell you or what treatment they need. You won’t be listened to a lot of time but intuition is great thing.

Never ignore what you think is happening. You will never be wrong.

DLA forms

These should be handed out with a stiff drink and a bowl of snacks. You will cry and walk away from those forms more than anything you ever do.

Hours of writing about exactly what you’re child can’t do and all the bad days is ultra depressing. My one tip would be to photo copy the forms so you can transfer it over onto the next renewal forms.

Bedtime reading

You will no longer read a mushy love story or an exciting thriller book, these will be swapped for medical journals or online documents. Reading countless articles about how different therapies can help your child will become you’re everyday reading.

Pricing

Be prepared to have no money…. Ever! Everything costs triple the price when special needs is put in front of it. Therapies, equipment and toys will be so expensive toy will have to sell your soul to fund them.

Celebration

You will celebrate every single milestone as if you’ve just won the lottery or world Cup – because let’s face it, you have!

From putting their finger up their nose or pulling your hair, to throwing the spoon or smiling through physio. Everything will be celebrated because you know how much strength went into doing it.

Pharmacy

The local pharmacist doesn’t need to ask your name when you walk in to collect your child’s medicines. They will automatically collect the prescription for you as you’re in there every week.

They will also recognise your voice on the telephone!

Rants

You will have daily rants about everything. They will become the norm. From rants about sleep to rants about why your child isn’t aloud a hood on their specialised wheelchair. You name it you will be able to rant about anything.

Man you will need this to survive!

Food

You will find yourself stockpiling on food your child eats. It doesn’t matter if they eat nothing else at least they will be eating something.

Best job in the world

It may be the hardest and toughest job you will ever do, but it is also the most rewarding job you will ever do. Let me tell you that you will always pull through whatever this journey throws at you.

You are strong and amazing and never forget that. You are not alone on this journey no matter how lonely the days feel.

Time is something I never take for granted with Ethan.

Each year that passes by makes me feel super lucky to still have my baby boy with me.

Making memories of each moment is very important to us. There are lots of things that get in the way daily so making the most of the non medical days are important!

This year has been no exception.

This year we gave Ethan another sister! He now is a big brother again to little Florence.

This was the best thing for all of us as a family. Ethan has taken a while to get used to Florrie, but with each day he gets more excited to see her. She’s very enthusiastic and Ethan is taking a while to warm to this.

She already adores Ethan and is constantly by his side.

We got our first Wav. A car that has changed our lives. Not having to lift Ethan and his wheelchair in and out of the car has made going out for days and going to appointments a whole lot easier.

Unfortunately, our lovely carer left us at the end of last year. Jasmine had been with us for a couple of years and was incredible with Ethan.

We miss her lots but understand that other commitments needs to come first. It didn’t take us long to find a new carer as Ethan is so smiley everyone wants a piece of him.

We have had a lovely time with Natalie so far. Natalie has fitted in well to our care package and Ethan has great fun with her allowing us a bit of respite.

We have had some lovely stays at the hospice. Our favourite one was in December. We went up with a family we are friends with. It gave me time with one of my lovely friends without us having our boys with us, but it also gave us a trip out to go ice-skating as two families together.

We had great fun all taking it in turns to push the boys around on the ice. It was wonderful to see them so happy.

Ethan has been working super hard as always. He has come on with his eye gaze work.

Ethan’s understanding is really good and when he’s well it’s important to stimulate this as much as we can. Watching Ethan on the eye gaze is exciting for the future.

We have had lots of lovely days out together. A big trip to Bristol zoo was a highlight for us all. Ethan loved looking at the aquarium area and being up really close to the penguins and the lions.

A big bonus was a Changing Places toilet to make our day easier.

Ethan had his first friend round for dinner last month.

Its something I’ve always wanted to do for Ethan. It was lovely to see him interacting with his little girlfriend. Something that isn’t as easy to do when you have children with complex care needs.

We will definitely be doing this again really soon.

Obviously there have been lots of medical things going on in the last year. Ethan had his peg changed and botox in his legs.

He’s had his VNS vamped up and he’s had many a trip to hospital, some even in an ambulance.

Its often easy to focus on what doesn’t work for us, it’s nice to look back at fun things we have done too.

I hope these are the things that stay with us most.

Sharing your home sometimes becomes quite overwhelming.

I don’t mean sharing it with my husband and children, although that in itself is another matter! I mean opening my home to everyone who needs to come in.

We have carers in every week to help us with the care of Ethan. This is so very needed but it can become overwhelming.

It sometimes feels like your never alone.

Of course, we don’t have care every day so we are alone but it feels like our house is always full. This is an odd concept because I love sharing our home with family and friends and I love having our carers.

Evenings are often full of ups and downs to settle Ethan so we often don’t get our evenings free.

The nights he settles are when we have care in. The nights we could get to sleep early, but instead we need to wait up to let carers in.

When we first had overnight care it was incredibly weird to let someone into your house and have them stay awake all night whilst you slept. We soon got used to it and it’s become normal practice now.

We don’t notice the carers when they are here and we manage to get some proper rest.

Also adjusting how you act in your own home when others are in and out all the time is hard.

Having to be fully clothed to go to the toilet in the night, or make the bottles. Ensuring you close the toilet door or have the place tidy, my house is definitely not a show home but I do try to keep it semi tidy, although this isn’t often possible and carers and practitioners often see the house in a right mess.

Entrusting your precious son to carers is something I had to get used too.

Allowing them to be in control and take on his care took me a while to adjust too. This was easier to hand over to night carers as I wasn’t there to takeover.

The day carer visits were harder to switch off from and it took me a while to be able to relax and not jump in to do things for Ethan.

Accepting help is never easy but I know I cannot do it all alone.

We have been incredibly lucky that all of ours carers past and present have been so lovely and just fit right into our family dynamics.

We see the same carers every week which is the way we need it for consistency.

Our day carers are often around during family times so we feel like they are a bit of extended family for us all. It’s always sad when someone moves on because they become part of the family.

We constantly have appointments for Ethan inside our home. People come to see Ethan or to check in with me.

Its hard to know that so many people visit you weekly but they aren’t here for a fun play date or a glass of wine.

I often feel overwhelmed by the weekend, as our house has been used by loads of people all week, that when everyone’s home I never get it in order.

I am very appreciative of all the help we get. We couldn’t do it without the help of all our lovely team.

They really are all lovely and are part of the family.

Just sometimes I wish this could all be different and we could have just the normal traffic of everyday life for fun and enjoyment rather than necessity.