What if I’m not Special?

Parents of children with special needs are often told how strong they are, how incredibly lucky the child is to have a parent like them, because special children are only given to special parents right?

I am not a special parent. I’m just a parent.

I’m not different to any other mum or dad, my son wasn’t given to me because I have the magic ability to make the world a better place for him and his needs.

My son isn’t “lucky” that I’m his mum either, there’s no luck involved.

I love him with all my heart and I would do absolutely anything for him but that doesn’t make him lucky, it just makes him my child.

Yes, I do go above and beyond for him, we go everywhere and anywhere he wants to and if he wants to do something that I know will hurt my back and make my arms ache because he can’t support himself, that will absolutely not stop me doing it!

But does that make me special?

I don’t think so. I am a good parent, and it might sound like I’m being big headed in saying that but that doesn’t really matter.

I make mistakes, probably on a daily basis! But I love my children with all my heart. And that’s what makes me a good parent.

I don’t think special children are given to special parents because it just happens, there is no real reason for it.

Thousands of children are born with additional needs, or develop additional needs when they get a bit older for many different reasons.

So, if you’re reading this and your child has a disability, don’t worry that you aren’t special, don’t worry that you might not be good enough and certainly don’t worry about if you can do it.

Because you can, if you love your child then I fully believe that you will be able to tackle any obstacle that comes your way.

And it’s ok to ask for help, remember – we aren’t superhero’s with super strength!

Just parents, with an unconditional love for our children.

Dear Cerebral Palsy…

I hate you. I hate you so much. You try and rob people’s ability, their chance at normality and independence.

I was first introduced to you when my son was just a year old, but you had already been there from the beginning, we just didn’t know it yet.

The part of the brain that controls coordination, movement and balance had already suffered irreplaceable damage from birth but we weren’t to find this out until much later on.

Those early days that we were supposed to be enjoying the precious time with our baby were spent worrying and wondering what was “wrong” with our child.

We spent hours, days, weeks researching and you kept popping up wherever I searched. It was like you were just screaming out at me. CEREBRAL PALSY.

After we were given the diagnosis, I’m not really sure how I felt.

I felt loss, I felt like I had just started grieving for the life my son wouldn’t have because of you.

From then on, the words “can’t” “won’t” and “will never” were spoken to me at nearly every appointment. The reason? Cerebral palsy. Of course.

But guess what… Cerebral Palsy does NOT control personality, it does NOT control ambition and it does NOT control determination and in fact, I believe it actually fuels these qualities.

I have learned so much since my son’s diagnosis, I have learned that he is in fact very able with some extra help, he can be more independent and he absolutely will be included in anything he wants to.

Cerebral Palsy has robbed him of his physical ability to be able to do a lot of things he should be able to independently.

But we will never give up on fighting against it, my son works so hard at his physiotherapy every day and he still goes to bed smiling every night, he is happy.

His cerebral palsy doesn’t upset him because I’ve never allowed it to stop him doing anything he wants to.

Cerebral Palsy, I hate you but I will never allow you to rob us of our happiness.

Exclusion Of A Special Needs Sibling

“Oh he’s so cute! Hello!”

“I LOVE your wheelchair, is that the Gruffalo on your wheels!?”

Just a couple of things that was said to me and my 3-year-old son when we were out today at the shops.

Luckily he loves the attention and was more than happy to talk to these people, and the others who come to say hello.

My son has quadriplegic cerebral palsy and is unable to support himself so he’s always in his wheelchair when he’s out.

I am a very strong advocate of inclusion and I never, ever want my son to feel excluded from anything.

It doesn’t matter what it is, if he really wants to do it then you better believe I’ll make that happen one way or another!

So when we are out a walk or at any sort of activity, it really brings a smile to my face when people don’t shy away because he’s in a wheelchair because the reality is, it can happen a lot.

But there’s someone else that comes everywhere we go, my daughter.

At just 4 years old, she is only a year older than her brother but her mind works in such a way that I often believe she has much more understanding and compassion than most adults!

She understands her brother needs more help, she accepts that.

She understands that we have to go to a lot of appointments, she accepts that.

But one thing she doesn’t understand is why he gets so much more attention.

Not from me, who she knows has to help him but from strangers just coming to say hello.

It makes me feel a little sad when people are putting the extra effort in for my son and my daughter just gets pushed to the side.

So if you ever see us, please come and say hello to my son but also say hello to my daughter.

Inclusion is about equality and it’s important to remember that.

Who Am I?

Stranger: “Where do you work? What’s your job?”

Me: “Work? My job? Well I, I emm… I’m a carer.. for my own child…”A question that I always tend to get a bit nervous over.

Why?

Because how do I answer?

I HATE saying that I’m a carer, not because there’s anything wrong with that because there’s definitely not – carers are truly amazing, but I just don’t really feel like a carer I guess. I’m just a mum?

Doing what every other mum would do in my situation!

When I’m asked if I work or what I do for a living I just don’t know what else to say!

I stay at home because I can’t go back to work.

I need to be around for appointments and therapies and although I’ve actually tried looking, I just can’t find anything that would work around my child’s needs. But I feel guilty for not being at work – how crazy is that!?

I think it’s something a lot of mums feel, whether their child has any additional needs or not, we feel like we should be out working.

Because that’s what we have always been taught.

From such a young age we are asked what we want to be when we grow up, and even if you were to say “a mum” then you would probably give the person asking the question a laugh and then be told that yes, that’s a lovely thing to wish but you also need to have a job!

It’s great to have a career and do well at your job but after we do have children we also need to be able to feel like if we don’t return to work straight after maternity leave then that’s not a bad thing!

I wanted to go back to work after having children and it was never my intention to stay at home but I am trying to tell myself more and more not to feel guilty!

To enjoy the days and be happy knowing that it’s not a possibility for me to return to work just yet or any time soon probably! And that’s ok.

How Can I Stop Comparing My Child?

Someone messaged me recently asking me a very difficult question.

“How can I stop comparing my child to others of the same age or even younger?”

This person has a child who has just been diagnosed with cerebral palsy at the age of 1, around the same age my son was diagnosed and is trying their best to come to terms with this diagnosis.

It’s hard, really hard and it brought back some tough memories when I thought back to how I felt when my child was that age and he had just been diagnosed.

But even before my son was diagnosed, I have very vivid memories of comparing, constantly comparing.

It almost became an obsession, everywhere I went there were little babies sitting up in a highchair or eating their lunch within ten minutes without any mess.

There were children so much younger than mine who were crawling and walking, stacking bricks and holding a crayon, the simple things you often don’t think about…

But I did, I thought about it a lot.

So when I was asked this question I didn’t even know how to answer at first, I just thought to myself “why am I being asked this question!?

I’m not the right person to ask, I compared all the time so I can’t answer this!?”

Compared. Past tense.

Then it suddenly dawned on me that I don’t compare anymore. I didn’t even realise! Something that was once an obsession is now a very distant memory, so what changed?

What stopped me comparing?

And then I remembered… My son said his first words, and then began to talk, I was told he may never do this.

That feeling that I felt is like nothing I can describe, I thought my heart could burst and it’s like nothing else mattered.

Then there was other “little” things that came, except they weren’t little – to us they were huge!

Every parent celebrates their child’s milestones but when you have a child that perhaps does something that you may have never thought possible, no matter how small it may be, then you’ll realise how much more special that is.

How much more important that is.

How could I possibly compare my son to someone else? My son has a large part of his brain that was damaged when he was without oxygen at birth – he’s a miracle really!

So for him to do ANYTHING, in my eyes is worth celebrating.

He may not be sitting up yet, he may not be able to move around but there is plenty he can do and he makes me smile every single day.

He makes me feel loved every single day and he makes me feel proud every single day.

So when someone else is celebrating their child sitting up for the first time I celebrate with them, I don’t want people feeling guilty about talking about their own child’s milestones around me because my child can’t necessarily do those things.

He is happy (as am I!) and that’s all that really matters.

Premature Babies Aren’t Cute

Before you jump on me and tell me that they are, of course they are – all babies are cute! But the meaning behind the title of this blog is about so much more.

As a preemie parent, how often have you heard “oh I wish my baby was this tiny!! How cute!?” Or “you’re so lucky that you got to spend extra time with your baby”

Really!?

Only when you have a child born earlier than they were supposed to come will you understand how frustrating it is to hear that and how upsetting it is when you read about people trying to bring labour on early.

Here are a few facts about having a premature baby that you may not realise if you haven’t given birth early.

Did you know that you probably won’t hold your baby straight away?

You might not even see them!

When my son was born, I genuinely didn’t even know if he was ok, he didn’t cry when he came out and was whisked very quickly away by a lot of people trying to save his life.

It wasn’t until he was about 6/7 hours old that I actually got a glimpse of him in that incubator and it was SIX days before I got a cuddle.

To see your newborn baby with wires everywhere and breathing equipment is the most scary thing and then leaving the hospital on your own to a silent home is something I can’t even explain, you hear stories of people being up all night with their crying baby wanting a rest and all you can think is how jealous you are of that, you would do anything to have your little baby home.

There are SO many risks and complications from having a premature baby too, it’s usually only the good stories that you hear!

But the reality is that a lot of premature babies face a lot of difficulties even after they have left the hospital.

They are so much more vulnerable for at least the first year of their life so what you might just think is a little cold could actually put a preemie back in hospital!

So, having a premature baby isn’t “cute” it’s actually terrifying and my heart goes out to all the parents who have had to go through that journey.

A Child’s Day with Cerebral Palsy

You’ve just turned 3 years old, your mind right now is like a sponge, taking everything in and all you want to do is explore the world!

“What’s that over there?” “What does that do?” “I need to go do that!” “Mummy’s going over there, I’m going to see what she’s doing” but wait a minute.. .

You can’t. You know what you want to do so why is your body stopping you?

You see everyone else walking about, picking up toys and exploring the environment around them why can’t you do that?

You may be somewhere new and just want to run and hide behind mummy but you can’t. You become confused, upset, frustrated…

That is the every day reality for a child with cerebral palsy.

My son has quadriplegic cerebral palsy and his mind works in the same way as any other toddler, he can talk and has an amazing understanding of everything but physically isn’t able to sit up, crawl, move around, walk and even struggles with his hands with some tasks, it’s the one part of his brain that unfortunately became damaged when he was born prematurely.

Anyone who has a child will know that they get into EVERYTHING, they will turn your house upside down and sometimes you’ll get a bit annoyed with this and lose your patience after saying “please don’t do that!” for the 100th time that day, but imagine your child couldn’t do any of that…

If you don’t have a child with disabilities then you probably haven’t ever thought about it, you’ve never had to!

And I’ll be honest, I had genuinely never really heard of Cerebral Palsy before my son was diagnosed, I had never seen a child not being able to walk when they should be able to so I never even realised it was an issue for some!

The reality is that unfortunately it is, for thousands of children.

Cerebral Palsy means that you struggle with coordination and control of your muscles, you have seen everyone around you sit up and move around, you fully understand the concept of this but when you try… no matter how hard, your body just doesn’t seem to be able to do this.

It can be frustrating, it can be upsetting but the most important thing is to NEVER give up.

Despite his disabilities, my child is happy. Very happy in fact!

I teach him that his disabilities don’t define him, he can still do what his friends are doing and we will always find a way to ensure he is included in all the fun and games with his friends and family and it’s so, so important that everyone else does the same too, he’s just like me and you so he doesn’t need to be treated any different.

He just wants to play like all his friends so please teach your children that it’s OK to be different, make friends with children of all abilities!

My son cannot walk but my son can be happy, he has the most determination I have ever seen, he is loved and he will ALWAYS be included.

Look at the Positives

This could be a tough one but I’m writing to ask you to look at the positives.

Some people may think, why is that going to be tough?

Surely there’s always a positive in any situation?

But as a parent, carer, family member or friend of a child with additional needs there are days (many, many days!) where you just can’t see it, no matter how hard you try.

Seizures, inability to walk, pain every day, constant medications, constant therapy, diary full of appointments.

These are just a few examples of what we have to “deal with”

I can assure you there IS something positive, always.

Close your eyes for a minute, think of that one person you know with a disability.

Now I want you try and forget about the difficulties they face, I want you to forget about the difficulties YOU face too.

Keep your eyes closed and remember their first ever smile, remember that milestone that you cried over when they achieved it, no matter how small it was and remember the love you felt for them when they came into your life.

I can’t tell you that things will one day be easier for you or for them.

For some that may not be true but I can tell you that when you’re having a particularly hard day just try and take one minute or even 30 seconds out of your day to close your eyes, take a deep breath and look back at that one good day you had, remember those precious moments where you bonded and where you felt pride in something they did that once seemed impossible.

To stay positive can quite often seem like a huge effort but in all honesty, if I didn’t try to see the positives at the end of a hard day then I would struggle, I mean really struggle.

So I urge you to do the same and I promise you, it will help.

Some people think that being strong means having big muscles or that you can lift something heavy but the truth is, being strong means that you power through each day doing whatever you have to move forward and to do that, you need the right mindset, a negative mind will only make your struggles seem even harder.

What Valentine’s Day Is Really About

When Valentine’s Day comes around we are reminded it is time to focus on that special someone, it could be your children, partner, husband, friend..

As Valentine’s Day approaches, we sometimes forget what the holiday is really about thanks to the big markets out there for chocolates and cards and more.

It can be overwhelming, trying to decide what to get and who to get a box of chocolates or card for.

Yet Valentine’s Day should be a day when we slow down by sharing our love and appreciate all who are there for us.

Whether it is a friend, boyfriend, girlfriend, classmate, teacher, parent, husband, wife, or child–you don’t need to spend tons of money or buy a dozen roses to show that you appreciate what they do.

All it takes is a hug, a shared day together, a handmade card, a homemade meal, or a thoughtful favour done for someone.

One small gesture is all you need.

Showing people, you care is contagious and will continue to spread the love you’ve received.

Even better, you are showing your children how to show love, acceptance and helping those who we care about.

Rather than spending money on gifts and cards this year why don’t you make something?

Take some time out of your hectic lifestyle to do something for someone you love.

Perhaps you have a friend who doesn’t get a break, offer to babysit for a few hours while she gets some much-needed time alone.

Your partner has been really busy recently, make up a menu and cook a nice meal from scratch or maybe make up a poem or something, something unexpected!

Have a laugh together.

Maybe you’re usually too busy with everyday life to spend loads of time with your children, turn your phone off for the day and spend the time creating valentines’ crafts, cuddle on the couch with a film!

There’re so many ideas out there, spend time not money.

Show that special someone how much they really matter to you and share the love, I guarantee that it won’t only make them feel loved, it will make you feel so happy that you made someone you care about feel that way.