I Envy You

Hello, I’m a special needs parent and I envy all parents with children that don’t have additional needs.

Oh.. I just said that out loud… that feels like a big deal.

Am I going to get called a bad mum? Attention seeker?

Well right now I feel like I have to share it and get this weight off my shoulders.

I absolutely LOVE my children, inside and out they are the most wonderful little people and I feel incredible to be their mother. My children bring me absolute joy every day and my love for them could not be greater.

Which is why I feel pretty guilty even writing this blog.

One example is when talking about what others do in their free time.

“Oh we just had a lazy week, I attended a mother and toddler group and my little one ran round and loved it!” or “I’m back at work full time so when we are at home we just play and be silly”

I envy you.

I can’t go back to work because my son needs me full time, during the week we are at appointments and therapy, we do physio each and every day and even getting dressed and ready in the morning with medication, AFO’s, stretches and everything else that’s needed, it takes at least double the time.

Another reason is my knees hurt, my back hurts and my arms ache every single day.

When you have a child that can’t move around then YOU are their legs, it’s YOU that carries them and helps them get up and down.

You are told not to and are given advice on the “correct” way to do things but let’s be honest, we just want our children to be happy so if that means doing tasks that we are fully aware will not do our backs and knees any good then we go ahead and do it anyway!

I feel like I’m constantly in a daze.

It’s hard to explain but there’s always SO MUCH racing round in my mind “did I give him his 11am medication?” “Did we have an appointment today?” “Have we done enough physio?”

That when others are talking to me then often, I feel like I’m looking at them but not taking in a word that they are saying, how can I when there’s so much to try and remember each and every day!

And it can also get pretty lonely sometimes because you often don’t have time for anything else.

So yes, I’m admitting it.

I don’t want to change anything and I cope pretty well with what I have to but I really do envy those who don’t have to go through what us special needs parents have to.

Let Them Have a Break

We all need a break from reality every now and again.

As adults, most of us like to take a holiday away from every day life to forget about work, washing and everything else!

We all love some time away to relax and enjoy ourselves, quite rightly too!

It’s so important to look after ourselves and de-stress.

But it’s so important for children too and for children with additional needs it’s absolutely no different.

If you are a parent of a child with a disability then you will know how much is involved with regards to their needs and care.

There are days where you feel like you don’t know how you will fit in all the appointments and therapies but just stop for a minute and picture yourself in their shoes.

If you are feeling overwhelmed then believe me when I say, they will feel the exact same way even if they don’t show it.

Perhaps they just get on with it or maybe it’s a bit of a battle to get them to do all these appointments and therapies but either way, they need a break as much as we do.

So take the time, clear the calendar, book a break away.

As a parent, this might seem like hard work to do but I can guarantee you this is something you will not regret.

Spoil them!

Everything I do, I do it because it will help my child.

He has to do physiotherapy every single day, he has to wear his splints every single day, he has to come to appointments and he has to work hard but it’s all for him, to help him and I know that one day he will understand that everything we had to do was for very good reason, but this week we had a break and went on a little holiday.

I didn’t make him wear his splints all the time, we did absolutely no therapy and there wasn’t a professional in sight telling us what we had to do.

We laughed, we had fun and for one week, we were a “normal family” (if that’s even a thing!)

It may have not been the kind of holiday I had been used to before I had children but seeing my children happy and free from every day life has been the best kind of holiday I’ve had probably ever.

So, next week we will have to go back to the reality of all the hard work involved with my sons disability but some family, therapy-free time this week is something we all needed and I urge each and every one of you to do the same.

I Will Never Predict His Future

I will never, EVER predict my son’s future.

EVER.

Many have tried to, mainly the professionals who have come across him, if they don’t know him already, all I have to do is tell them that he has quadriplegic cerebral palsy and it’s like they think they know everything about him.

I have been told “he will never…” fill in the blanks yourself, there’s a huge list!

Recently at our paediatrician appointment, his weight was brought up in conversation as he hadn’t gained as much as expected.

I was quite surprised and asked if this was maybe due to him using up more energy with all his physio that he does.

I was told that it’s probably because he won’t eat as well and as much as other children as his age.

I laughed, like actually laughed out loud, I didn’t really mean to but it just came out!

I went on to tell his paediatrician that he eats so much better than his fussy sister and has no trouble with his food at all!

I’ll tell you exactly what he said next:

“Well, with his cerebral palsy he won’t eat as well, you probably don’t notice it because you’re just used to it”

Yes. Seriously.

I didn’t say any more, I was in no mood for an argument at that time but it made me wonder why people seem to think they know what my son can and can’t do because he has cerebral palsy.

He has already achieved so much more that people ever predicted he could and just today he even learned to roll from back to front all by himself.

HUGE milestone, I still feel a bit emotional about that one!

Yes, he has cerebral palsy and yes, all 4 limbs are affected, he does struggle with a lot of things but he works incredibly hard and I have no doubt that he will continue to surprise everyone.

So when people ask me “will he ever sit up?” “will he ever walk?” “Will he be able to live independently when he’s older?”

I tell them that I can’t predict his future.

Even if I could, I wouldn’t want to because that’s for him to decide.

One thing I do know though, he will never give up and one way or another he will get where he wants to go and I’ll be behind him every step of the way.

The Expense of Having a Disability

There is one topic I could talk about for hours and that is the expense of having a disability.

Sounds a bit strange but anyone who has a disability or a child with disabilities will know exactly what I mean.

My son needs a lot of equipment, he can’t yet sit up or move around in any way on his own so as you can imagine, our house is full of different pieces of equipment to help him be able to play, eat and do anything he would like to really!

Luckily, we have the amazing NHS to provide us with some of these but there’s a lot they can’t.

He needs a therapy bench so I can do his physio at home, we really couldn’t do without it. A bench.

Seems pretty simple right?

I asked his occupational therapist about getting one and she said this is something I would have to purchase myself as unfortunately it’s not seen as “essential” so after a quick google I was shocked, HUNFREDS of pounds, for a little bench!

Now, I fully understand that with a lot of equipment for people with disabilities it has to be thoroughly tested and a lot of research is done into making these but some things I just can’t believe.

One example is a rain cover.

If I wanted to purchase a rain cover for the specialist pram that my son it is it was costing nearly £100, that was just for the cover too and didn’t even include the hood!

It just hurts me when there’s so much equipment out there to help but so many families who are having to try do without because they simply can’t afford it.

I just wish I knew why it was so expensive to have disabilities…

It sometimes feels like when searching online for a product and you type the word “special needs” it instantly doubles, triples in price.

I have come across a few amazing charities that help people access equipment they require but can’t afford and they do the most amazing work but there’s still a huge part of me that just wishes it was as simple to go out and buy something for my son when he really needed it.

There are so many different things that we don’t have that I know would help him and if breaks my heart that I can’t just go get it tomorrow for him!

Does anyone else feel this way?

Money is something we don’t often talk about, people often feel embarrassed to admit they can’t afford something but I felt like this was important to share.

There’s ALOT of parents out there that simply can’t go back to work due to their child’s disabilities and yes, there is carers allowance but that’s nowhere near enough to be able to not only live on but also purchase items for the child to help them with their therapies and just in general, and as a parent, that truly hurts.

One for the Dads

Any time you read a blog online about children it’s usually from a mum, when you see pictures on social media of children it’s usually with their mum or the picture was taken by the mum.

But dads need a mention too!

My husband is amazing, I could talk about him all day long but the only time you’ll see a picture of him on our social media is on a weekend, and that’s simply because he works all week.

When my son was diagnosed, I made the decision to stay at home and care for him which means my husband has to work so hard to provide for us all, I know he has a stressful job but he never lets it show.

As soon as he comes through the door on a night, he steps straight into dad mode, he does everything I would and always reads a story to our children before bed.

He then helps tidy up and often cooks for us too (did I mention how amazing he was?)

He has never once complained about the mess when he comes home and always reassures me when I’ve had a bad day!

Everyone always tells me what an amazing mum I am and admires how much I do for my children but I don’t do any more than my husband does!

It’s only because he’s out working that it looks like I do more.

When our son was diagnosed, he was the one spending hours and hours researching everything we could do to help, he was the one who called and wrote emails to professionals when we needed to see them more because I was too shy and too polite to do it myself!

There are so many dads out there that don’t get the recognition for what they do for their children but what’s even more special is that they don’t mind!

They just carry on with what they do and do anything in their power for their children just as mums do, because the love between a father and child is equally as incredible as the love between a mother and her child.

So to my husband, thank you.

Thank you for everything you do for not just our children but for me too, just know that although I don’t often tell you, you are amazing!

I really don’t know what we would do without you.

I Was Once Scared of my Child

Can you believe I just actually said that out loud!? I was once scared of my child… what a thing to say, but it’s true. I was.

And I think it’s something most parents of preemies can relate to.

When you first have a baby, it can be scary! But when you have a premature baby that doubles, not only are they small and fragile but they are not fully developed and that’s a fact. Not to mention all the beeping machines surrounding that baby.

When my son was born, I had an 11-month-old daughter already so how to take care of a baby was still pretty fresh in my mind but when it came to my son, I was petrified!

He was 6 hours old when I first laid eyes on him and I’m not sure what I was expecting, but what I saw was nothing like I could have imagined.

I couldn’t actually see his face because of the breathing machines and he was bruised from head to toe so when the nurses asked if I would like to change his nappy, I of course said yes to them because he was my son and that’s what was expected but deep down, I wanted to say no, I wanted to hide away and let them do it.

They were the professionals and were used to these tiny babies, I was not!

I’m sure I was actually shaking when I started to change his nappy, he had zero fat on him and I was honestly so nervous I was going to break him! I had never seen a baby so small and delicate.

The whole nicu experience is one I’ll never forget. The nurses were absolutely amazing but at the same time I felt like I should know exactly what to do because he was MY child. Yet I didn’t, and that scared me.

I remember when he got to a stage where he was ready to start trying with breastfeeding and the nurse coming over with a blanket because he was getting so cold, machines started beeping more than usual, he wasn’t latching and I was soaking him.

We tried it once more and the same thing happened. It’s something I often look back and regret not persisting with but at the time I was so terrified of doing it wrong that I moved on to bottle feeding.

However, that didn’t come without its challenges either!

From day one I loved him more than words could describe but it wasn’t until we came home than I became a bit less scared of him!

Having a premature baby or a baby in nicu changes you as a person, but in the most amazing way.

You are completely thrown in to it all and without question you will become stronger, braver and more confident.

I was once scared of my child but not in a bad way.

As a mother I was scared because of how much I already loved and cared for this little baby and yet I had to watch him fight for his life, but that fear also came with determination, the determination to do anything in my power that I could to keep my child happy, healthy and loved.

How To Treat a Child with Special Needs

If you don’t have a child with special needs you may wonder how to treat them, how to act around them, what to say and what not to say.

There are thousands of children with additional needs, each so different too, even if a child has the same diagnosis as another, there really is no 2 the same.

So, when asking the question, “how to treat a child with special needs” you may think the answer will be a difficult one as no 2 disabilities are the same.

But it’s simple. It really is.

Watch their sibling. Just sit back and watch and you’ll have your answer.

What do you see? Do you see them acting any different as to how they would act around another child with no additional needs?

The quick answer is no. They don’t treat them any different, and that’s your answer right there. If you’re teaching your children about disabilities please don’t tell them they need to be any different around people that have them!

I have 2 children, my oldest has no disabilities and my youngest has quadriplegic cerebral palsy, there is just a year between them and they are the best of friends.

My oldest treats her younger brother no different from how she treats her friends.

She is aware there is a lot of things he is unable to do but that doesn’t stop her playing with him the way she would if he didn’t have any disabilities! The only thing a bit different is that she will sometimes have to shout over to me “Mum! Wheel him over this way now please, we are going to play something else!”

I’m sometimes even guilty of thinking “oh, he can’t do that so we will play something else” if we are playing with something I think he won’t be able to do but his big sister never, ever doubts his abilities and she’ll just help him if he needs it, or leave him to it and let him figure it out!

I genuinely don’t think he would be able to do a lot of what he can do now if it wasn’t for her, she has taught him so much without even realising it herself!

So, when I meet another child with disabilities, no matter what they are, I don’t treat them any different than how I would if I was meeting any other child and I know my children wouldn’t either.

It’s important to let them ask questions too.

I had an experience once where I overheard a child ask his mum “why is that boy in a pram he’s not a baby?” And the mum told her son off and very quickly walked away from us.

It upset me because it’s then teaching that boy not to speak with anyone that’s a bit different (that’s how I saw it at the time anyway!) whereas, if she said to him “why don’t you go ask!” Then I would have been more than happy to answer any questions and I know my son would have loved to said hello!

Don’t shy away from disabilities and don’t be afraid to ask questions. We are ALL different but we should ALL be treated the same.

My Son is in a Wheelchair

My son is in a wheelchair. Actually, right now he’s in a specialist pram but he will be in a self-propelling wheelchair within the next month.

When we go out, we face the stares of anyone we pass already so I know that’s only going to become more obvious to us when he’s in a self-propelling wheelchair (the one with the big wheels at the back!)

But you know what, I would stare too.

It’s what we do! We see something different and we look because, well, it’s different!

I just wanted to write to say that I don’t mind the stares, the looking doesn’t bother me and it certainly doesn’t bother my son, he loves the attention!

I wanted to write to tell people not to be ashamed for looking, don’t feel embarrassed or rude when I you notice that I have caught you looking. Instead of shying away though, wave hello!

No one enjoys the feeling that people are talking about them in secret, whether it be good or bad. Don’t whisper, don’t wonder…

Come and ask questions if you have any!

My view of wheelchairs rapidly evolved when I became a parent of a child with a physical disability. I used to think of wheelchair users as “wheelchair bound”.

But I now realise this term is often insulting to those people who enjoy the freedoms that their chair gives them, even whilst society continues to place barriers and challenges for wheelchair users, being in a wheelchair is NOT a bad thing!

I don’t want anyone feeling sorry for my son because he’s in a wheelchair and I know for a fact that he wouldn’t want that too!

Because there’s nothing “wrong” with him.

He’s an extremely happy child and has the most infectious smile. He is very clever and makes friends very easily!

I don’t mind your stares but I would love for you to come and say hello too.

I am more than happy to answer any questions you have and I can guarantee you’ll walk away with a smile!

My son is in a wheelchair and that’s ok.

Make Time to Be in Love

“We need to spend more time together as a couple”

How many times have you said that to your husband, wife, fiancé, partner?

It’s strange because SO many people believe that children bring you closer as a couple, and yes, there is of course that unmistakable bond that you both have a child together but the amount of strain that it actually puts on a relationship is something that you’ll only know when you have children.

Then you have a child with additional needs.

Scarily around 50% of all marriages end in divorce now but what’s even scarier is that it increases dramatically to around 80-90% of those who have children with special needs.

Children with additional needs, no matter what the diagnosis, take up a HUGE amount of your time.

It may be that you need to do physiotherapy, medications, help with feeding, speech, helping with your child’s daily break downs, they may have anxiety.

They may not be able to do anything without you there, they could have physical, mental, emotional needs…

You may be up ALL NIGHT with them.

So where does your partner fit in? How can you possibly have time for someone else?

It’s hard, very hard and it really does make you question your relationship, because a relationship shouldn’t be hard, you shouldn’t have to make an effort, it should just come easy because you love each other!

That’s the thing, the love is still there but you often feel like the relationship is not. You can’t go on date nights like you used to and let’s face it you’re too worn out to really make an effort anymore.

However, relationships can still work!

You will have to make more of an effort but it’s so worth it! Think back to how you both felt when you met each other and you might have to dig deep but try and remember those butterflies you once got!

You know what, even if you have to set an alarm on your phone every day to remind you to send an “I love you” text to your partner then do it!

Love is so important and not just between you and your child but also between you and the person you fell in love with. It’s so easy to forget about each other but don’t forget to make time to be in love.