Mostly from well-meaning friends, some of my son’s therapists or even strangers who see how much of a handful my son and how hectic life can be.

Long days, usually starting at 3 am, quite often even earlier.

Even longer nights, where sleep is nonexistent, constantly waking to comfort my son who’s distressed for no obvious reason.

Meltdowns that can last all day, kicking, scratching and biting.

Appointments coming out of our ears.

Constantly having to fight for things he needs.

Constantly fearing my son choking (he has a poor/delayed swallow).

Constantly on the phone chasing up things such as equipment, tests or appointments.

I could probably write a book of all the, ‘non normal’, stuff we have to do just to get through the day but to save sounding like I’m moaning, I’ll just leave that there.

The thing is though, I never really quite know how to truthfully reply to that question.

I mean, I never really think about how I cope… I just try to get on with things.

Don’t get me wrong, I’ve had (and still have) many, many, days where all I’ve done is cried, stomped my feet, felt like a failure as a mother and wondered, “Why me? Why us? Why my son?”

Quite often, I sit down at the end of a busy day and find myself thinking, “Wow, how did we fit all that in one day?!” “How haven’t I gone crazy yet??”

But when it comes to it, the truth is, I cope because I feel I have to.

If I didn’t, my son would have nobody to fight his corner for him…

And that would make things a whole lot harder for him.

He needs me.

He can’t speak, so I am his voice, I speak up for him.

I am his home therapist, therapy needs to carry on at home too, right?

I am his pharmacist, making up meds and administering them in the mornings.

I am his secretary, answering phones, opening and replying to letters day in day out.

I am his carer.

(Somebody needs to tell someone, somewhere, that carers need caring for too!)

But most importantly, I am his mum and I won’t stop at anything to get my boy everything he needs.

When people ask me how I cope it sometimes feels as if they think it’s, ‘too much‘, then I start to second guess myself..

– Can I really do this?

– Yes I can, I have too. Am I doing everything I can?

– I’m doing the best I can. Is it all enough?

– I hope so.

I hope, one day, all of our hard work will pay off and we’ll see some progress.

I’ll admit, caring for my son is without a doubt the hardest, most physically and mentally draining thing I have ever had to do.

Every day is so, ‘full on’, and non stop until bed time (which doesn’t last long!).

Some days we can go all day without even so much as a smile from him, but when we do get one, even just a tiny smile before bed, it makes it all worth it.

So, yeah, basically the short answer – to the question, ‘How do you cope?’ – I do it for my boy, he needs me.

It affects his every last little thing you can think about.

Outings can be a tough one.

Meet ups with friends, birthday parties etc.

Birthday parties are my worst nightmare.

First off, they are full of, ‘neurologically typical’, children, the same age or younger than my son, doing waaaay more than he can.

They’re full of parents, happy parents playfully, ‘bragging’, to one and other about how, ‘good’, their babies have always been, how well they’ve always slept or how, ‘advanced’, they are.

Then something that always come into conversations between women – labour.

Urgh.. I sit back during these conversations, my son’s birth trauma still haunts me everyday, I don’t need to be talking about it to expectant mothers.

Then someone will come along, and cheerfully ask, “So, how’s he doing?”

I choke..

How do I answer that?

Do I go into detail about his latest regressions?

Tell them how excited I am that my almost 3 year old has just learnt how to point or bring his hands midline?

Tell them about his recent appointments?

How he’s getting on at Physio?

How his cerebral palsy is affecting his leg muscles more and more every day?

No.. I pause, and answer.. “Yeah he’s good”.

Eventually, when the party games and music starts it’s time for us to make our escape before it all triggers a meltdown.

There’s a huge misunderstanding around the whole, ‘meltdown’, situation.

Strangers in shops (Oh, how we hate shopping) will stop and say things such as, “Oh, he’s in a bad mood isn’t he?” “Typical boy, doesn’t like shopping!” Or, “Someone woke up on the wrong side of the bed!”

I know they aren’t intending on being malicious by their comments, so I just force a smile and carry on walking.

The thing is though – my son isn’t being naughty because he doesn’t like shopping, he isn’t just, ‘playing up’, because he wants to get to the toy section (that’s actually the worst place for him!), he’s just overwhelmed.

Overwhelmed by the noise, the lights, the sheer amount of people around him.

It’s actually scary just how lonely you can end up feeling when you are surrounded by so many people.

Eventually, his cries will attract the attention of just about anyone I push his wheelchair past.

They stare.

Stare at him, crying and scratching at his face then they’ll divert their stares to me.

The embarrassment of strangers staring and knowing that they are subconsciously judging your parenting consumes me.

I quickly grab what we need and leave.

Family/friends meet ups can be the worst.

“Let’s go out for some tea.”

Yay, a busy, noisy restaurant.

Perfect place, he’ll last around 2 minutes before he blows.

I’m lucky that my very close friends understand my son, some of them can even see when he’s starting to get overwhelmed now.

I want nothing more than to be able to go out, enjoy dinner with friends, have a peaceful shopping trip or just to go to a children’s party and enjoy it.

But the confusion between a, ‘naughty child’, and children with autism always makes me think twice about it.

There’s a lot more than meets the eye with my son, we’re still piecing his, ‘jigsaw’, together.

Next time you see a child, young person or even a adult not acting what you would consider to be, ‘normal’, please try not to judge or laugh.

They could have a lot more going on in their heads than you could ever imagine.

Awareness means acceptance.

If your child has an additional need for specialist equipment, then the arrival of equipment can be a sore reminder of what, “should have been”.

There isn’t really much choice in the special needs world of paediatric buggies, not half as much as regular prams anyway.

When my son was 11 months old, he was diagnosed with 4 limbed cerebral palsy.

When he was small, we could prop him up in his, ‘regular’, pushchair using blankets for support.

But as he got older, taller and heavier, his need for postural support became more apparent.

I absolutely loved my pram, I remember how we had saved for ages to get it.

It was a kick in the gut that we had to get rid of it, he didn’t even get 6 months use out of it.

We were assessed by occupational therapists and wheelchair services and we were eventually provided with the tendercare Snappi paediatric wheelchair.

I remember the feeling I had when it arrived.

It was so big, bulky and not as, ‘good looking’, as our previous pram.

I wanted to cry.

If I thought it was ugly, what would other people think?

Would people stare?

I knew it’s what he needed but it was so hard to come to terms with.

Next, came seating at home.

Aj didn’t have the core strength to sit in a regular highchair, he used to slouch and because of his poor positioning he choked a lot.

Again, whilst he was small, we used blankets to prop him up and help support him, but it just wasn’t convenient.

After being assessed by occupational therapy, Aj was provided with a Leckey Squiggles seat.

I remember this brought the same feelings with it that the wheelchair did.

It looked so medical.

What would people think when they came into my house?

Why can’t he have a nice, ‘normal’, highchair?

Without all the straps and stuff?

Next, came his walker..

This was a hard one to swallow.

He was at the age where I should’ve been buying reigns for him.

This just screamed, “I’m different”.

So many people used to stare at it, ask questions etc.

It actually makes me feel better about things when people ask, rather than just stare.

His latest and biggest piece of equipment has been his bed.

A Safe Space.

A week before it arrived, we took a trip to IKEA to pick out some drawers and storage units for his bedroom.

The only way out was to walk through the kids section.

This tore me apart.

Seeing the cute little beds with tents underneath, some even had slides!

(How cool?!)

When his bed arrived and had been assembled by the SafeSpace team, I went upstairs to look and wanted to cry.

This bed was HUGE, it looked like a fish tank, it didn’t look like a child’s bed, and that broke my heart.

I’m not at all ungrateful for the equipment we’ve received.

His buggy has opened many, many doors for us.

We can enjoy days out without worrying about him getting uncomfortable.

His feeding chair has meant he now suffers less from chest infections (as he doesn’t aspirate as much because of his good positioning!).

And, his bed has meant that he now has a safe place to sleep.

We don’t have to worry about him getting stuck in the bars of the cot or banging his head on the sides.

Since receiving Aj’s equipment and getting used to it all, we’ve come to terms with the fact he is, and always will be ‘different’, and whatever it takes, we will use any equipment to help him enjoy a, ‘normal’, life.

We have recently purchased a GoTo seat, this has meant Aj can enjoy swings, shopping trips and he can also sit on a ‘normal’ dinning chair!

He also now has a specialist trike which we LOVE!

We get stares, a lot.

Mostly from people who are just too shy (maybe?) to ask about his equipment.

Yes, our things are different, but they help him to be a little less different.

This will be the 1,033rd consecutive day I’ve had little to no sleep.

(My son is almost 3 and has never slept longer than 4 hours at a time).

Helplessly watching my son thrashing around, rocking and crying whilst not knowing what’s the matter or what I can do to help soothe him.

Sleep is something I think a lot of people take for granted!

I know I never thought of it as something to look forward to, that was before I had my son anyway!

Staying awake until the early hours used to be the, ‘norm’, for me, and it was never this hard to do!

Seriously…Where did I get all my energy from? 

Sleep is so important to every one, but possibly even more so for families caring for little ones with special/extra needs.

It is an important part of development.

It’s when the brain rests, recovers from the day and and repairs itself, ready for the next day.

It’s vital for concentration throughout the day, and little people need to concentrate to learn.

And little people with special needs, need that concentration sooo, so, much!

So when your getting less than 4 hours sleep a night, things can get tough. In fact, everything gets tough.

A lack of sleep can make even the happiest of people grumpy, short tempered or just less tolerant than they usually would be.

It puts a LOT of tension on day-to-day family life.

Apparently 50% of all marriages end in divorce.

This percentage jumps to between 80% and 90% for couples who have a child with special needs.

Eighty percent!!

That’s a terrifying statistic!

Parenting is hard at the best of times, but the stress and strains of raising a child with extra or special needs really does put your relationships and even friendships to the test.

Friendships start to wither away when you’ve got no energy to do the things you used to.

Fun days out become more like chores.

You end up having to make excuses to not go because your too tired to function and eventually, friends stop asking.

You don’t want them to stop asking, you want them to understand.

But no one will ever really fully understand until they’re going through the same thing.

No matter how many times they’ve been up all night with their new teething baby.

At least they know that’ll pass eventually!

As with friendships… Relationships can be much the same.

Whilst longing for a, ‘night off’, to go out and/or just spend time with your partner, the minute you realise you have the time, all you want to do is sleep.

A lack of alone time with your partner can also lead to arguments, and those teeny, tiny arguments usually end up blowing up into world war 3 because your both so tired and grumpy!

I complain, a LOT about being tired, but I’m lucky in the fact I have some real friends who’ve stuck around and an understanding partner, who just looks past my grumpiness (or ignores, probably the latter, lol!)

Just getting through the day sometimes without wanting to scream or cry can be a reward in its self.

Keep going mummies… and daddies!

Your doing the best you can.

Mainly it seems to be used for sharing selfies, keeping up to date with family and friends, checking in at posh restaurants etc

Everyone has their own personal reasons for using Facebook, but for a lot of people, it’s become a lifeline.

Since having my son in October 2012, the way I use Facebook has drastically changed.

My previous posts had all been pictures and status’ from nights out with friends, complaints about how boring college was and how ‘hard’ life as a teenager was (HA, It was about to get a whole lot harder).

When I was 19 I fell pregnant with my son and had him later on that year.

When my son was born he was diagnosed with HIE – grade 3, a severe lack of blood and oxygen to the brain.

We were told by doctors not to expect much from him and just told to, ‘wait and see’ – if I had a pound for how many times I’d heard that phrase!!

So, whilst still in NICU, me and my partner started to google HIE, cerebral palsy – literally any word we could to get us some information or hope for our future together as a family!

We came across a couple of private Facebook groups, I was SO happy to find these people, I quickly sent a request to join and that’s when Facebook became so important to me.

These forums had around 1000 people on them.

1000 people who had either been through the same or similar to us.

Some much further into their HIE journey than we were.

They gave us advice, hope – acceptance.

Now, I use Facebook for advice, support, reassurance or simply just to find someone to speak to when I’m awake at daft o’clock in the morning (which is a regular occurrence!).

I am now a member of several forums of which I’ve gained great knowledge from (thanks guys!), I’ve, ‘met’, new friends, some being as far away as America or Australia!

I have people who I know I can rely on for answers or even just educated guesses!

It’s been a passage for me to release my anger at life on bad days.

A place to share my sons accomplishments, inch-stones and milestones to people who just, ‘get it’, on the good days.

A place to feel accepted as a confused, first time mum thrown in to the world of special needs.

I’ve also found out about many different therapies and techniques through Facebook advertisements or through the forums and groups, then I can go along and ask others their experiences and opinions!

I found out about blogging for Firefly, a place where I can write down what I’m feeling, when I feel like my heads about to explode!

My personal Facebook page has very much turned into my sons – it should have his name there instead of mine – he’s the centre of all my posts!

Over the almost three years I’ve been in this, ‘world’, of special needs parenting, I’ve made over 100 new Facebook friends, and I am thankful for every single one of them.

I got pregnant a month after my 19th birthday, it was a huge shock, but a welcomed one.

I knew from that moment my life would change forever, but I never thought for one second I’d be living the life I am now.

Whilst pregnant, me and my partner still enjoyed days out together, trips out for our tea or things as simple as sitting down to watch a film together.

We enjoyed shopping trips, picking out cots, clothes and everything else a new baby needs.

We excitedly bickered daily over things such as whether the baby would be a mummy’s boy or a daddy’s boy, what he would enjoy doing, who would teach him to ride his first bike, take his first steps, teach him to swim etc?

We had no idea how hard any of those ‘normal’ things would turn out to be.

I was 19 at the time my son made his dramatic entrance into the world, and I had to grow up, literally overnight.

Born not breathing and subsequently going on to spend 14 long days in NICU, I was certainly thrown into the deep end.

Relying on monitors and machines to stay alive, the baby I should’ve been holding close, smothering in love and kisses, was laid alone and cold on the cooling mattress in his incubator.

The days I expected to be cuddling my new baby, showing him off to family friends turned out to be the days I spent watching my new baby fight for his life, with no visitors except for two hours a day for grandparents.

Days I had anticipated to be filled with congratulations cards, balloons and happy people became days I were receiving sympathy cards, “Thinking of you during this hard time”, from people who didn’t know what else to say.

2 months before my 21st birthday, a time that I’d always thought would’ve been celebrated. My son was diagnosed with spastic quadriplegic cerebral palsy.

It didn’t change him as a person, he was still the same little boy I’d always known and loved. It changed me though.

Again, I felt like I’d taken another massive leap into, ‘adulthood’ – not many 21-year-olds have to deal with all this.

The big words; “diagnosis”, “prognosis”, the worry and fear for the future.

3 weeks before my 21st, my son suffered a prolonged tonic colonic seizure.

It lasted over 50 minutes and nearly took my precious boy’s life.

Again, this was something no new mum, young mum or any mum for that matter, should have to see.

Recently, he got the diagnosis of severe autism.

We’ve also been told he needs a gastrostomy inserting to help with his feeding issues.

How does my brain, that was once filled with, “What to do this weekend..” questions, deal with all this information?!

I’ve written this as a lot of the mums I meet on Facebook forums relating to my son’s conditions etc, are all older than me, I know I’m not alone, but I feel it a lot!

I’m not usually one for saying, “Things happen for a reason”, or the, “God chose you”, sayings.

However, I do believe my son and his, ‘problems’, have changed me as a person.

He’s made me stronger.

He’s made me wiser.

He’s made me aware of so much more than I could ever have imagined.

He’s made me, me.

First of all, I’ll give a quick introduction of my son and his daily needs – Aj will be 3 years old in October, and as a result of a brain injury, he has four-limbed cerebral palsy, severe autism, global developmental delays, and feeding/aspiration problems.

He relies on me throughout the day for all his needs (feeding, medications, toileting, dressing, Physio and chest Physio etc..)

He can’t entertain himself, as he doesn’t play with toys, so I’m always trying to find something to help settle his frustrations.

He’s also a hardcore sensory seeker and needs constant supervision because of this!

He has meltdowns throughout the day, these can sometimes last all day, he scratches at faces and legs and bites himself.

He needs to be picked up a lot when he falls over and he loves to be swung and spun around (which takes it toll on my back!!)

Days with Aj are pretty much non stop.

And this is why I absolutely LOVE family fund!

We recently applied for a grant for a family holiday.

We sent off the application in May and not long after, we received a letter saying we had been awarded a grant to go toward a haven holiday! (YAY!)

Immediately after opening the letter I was excitedly checking online, searching for Haven sites, checking dates (what fit in with both mine and my partner’s schedules!) and looking at their facilities.

We managed to book a fully adapted caravan in Wales!

It had a wet room, wide door frames and a ramp outside!

Something as simple as a week away with the family may not seem like much to some, but for us, it was literally a life saver.

It gave us the chance to have fun, fun without worrying about what appointment was next.

We went swimming on the site daily (my son LOVES the water, he feels so free whilst he’s in there!)

We visited beaches, took him to the arcade twice a day to play on his favourite ride and we had days out, he even got to ride a pony! (With lots of help from his daddy!)

All these things we wouldn’t have been able to afford to do if it wasn’t for the help from Family Fund.

Being so busy doing ‘normal’ family things took my mind off worrying about my son’s upcoming operation for a gastronomy insertion, which I’ve been driving myself crazy over!

We smiled, we laughed and we felt a little bit more ‘normal’ during that week away.

So, thank you, Family Fund.

You are incredible.

As the parent of a non verbal almost 3-year-old, I worry quite a lot about his (lack of) speech and communication.

You know, simple things, such as how will he greet people if he can’t say hello?

How will he ever make his needs known to others if I’m not around to interpret his body language and facial expressions and explain them?

How will he ever make friends when he can’t join in their conversations and games?

Throughout the day my son keeps me busy enough not to pay attention to others and their children.

But when he goes to bed and I have the time to get on Facebook, watching videos of friends’ children playing away with others, babbling or talking.

Looking at pictures with captions stating how their child had said, “THE funniest thing today”, or, a status where they’ve written about a cute conversation they had with their child before bed where their child has unexpectedly said, “Night, mummy, I love you.”

It’s a harsh reminder of just how different he actually is.

Those four words, I had somehow managed to block out, I rarely thought about them.

I mean, how many other 3-year-olds told their mummy they loved them?

(I kept trying to tell myself I was right there).

It soon became apparent that I wasn’t right at all.

The more I see other neuro-typical kids, the more I realise how much Aj, ‘should’, be saying by now.

A quick Google tells you – “By age 3, a toddler’s vocabulary usually is 200 or more words, and many kids can string together three- or four-word sentences.

Kids at this stage of language development can understand more and speak more clearly.

By now, you should be able to understand about 75% of what your toddler says.”

200 words?!

That’s a LOT of communication we’re missing out on.

And the part about understanding makes me feel like such a failure, I can barely interpret his subtle facial expressions some days.

I should be able to read his signs by now.

He changes so often though, it’s quite hard to keep up!

I wake up from dreams wanting to cry because he could talk in my dreams, I could hear his voice, we could play and have a conversation.

But then I woke up.

Back to reality where the only vocalisation that comes from my son is crying.

I worry, a lot.

What if I never hear him say, “I love you, mummy!” how will I ever know how he feels about me if he can’t tell me?

One of my Dad’s friends asked me not long ago, “When will he talk?”

A simple, harmless question.

That question hit me like a ton of bricks.

“I’m not sure. He might not,” I said.

And their reply?

“Aww (with a pitiful look on their face) he won’t be able to say, “I love you mummy,” will he?” I had to reply, ‘No.’

My heart ached.

Although I know worrying won’t change our future together, I still think about it, a LOT.

My son is starting at a special needs school in September, I recently spoke to their communication teacher and speech and language therapists, they’re excited to work with him.

I’m excited to see how they can help him and hopefully find a way for me to communicate with my boy.

For now, I’ll take the stream of dribble running down my arm as I write this post with my son falling asleep on me as a sign, his sign.

His sign that he loves me and trusts me to keep him safe whilst he sleeps.

It’s a place I try not to visit too often as I don’t like all of the questions and self doubt that it brings. Watching my almost 3-year-old crying and screaming until he’s physically sick, hurting himself, pulling at his clothes and scratching his face during one of the worst meltdowns he’s ever had, I wondered, am I doing something wrong? Is this my fault?..

What would he of been like if he had never suffered a brain injury?

Would our days be the same? Or full of laughter instead of constant crying!

Would our nights be more enjoyable, would he sleep!?

Would he be able to run, jump, climb?

Or even walk in a straight line without falling over with every other step?

How many words would he be saying already? – would he say “I love you mummy”, the four words I fear I’ll never hear?!

Would he be a happy little boy?

Curiosity gets the better of me when I’m in this mood…The questions keep coming.. I know he definitely wouldn’t have the physical limitations and cognitive issues he has now if it wasn’t for the damage to his brain. I feel guilty, guilty I’m even thinking about it. But seriously, just what if?

What if we could go out for dinner without having to worry about how overwhelming such an environment could be for Aj?

What if we could go for walks in the park together, running and playing?

What if we could have a conversation with each other?

What would his little voice sound like?

What would it be like to actually enjoy a day out as a family with no tears?

How would we fill our days when we wouldn’t have appointments day in day out?

How would it feel to not count the hours until bedtime?…

Now that one, that one makes me feel awful.

But on days like today I do find myself checking the time, how many more hours until bedtime?

How many more hours of the constant meltdowns? Now Aj is in bed and I’ve had time to sit and reflect (and by reflect I mean stomp my feet and have a cry), I understand it’s okay.

It’s okay to feel like this some days.

It’s completely normal.

I can’t change the past, all I can do is try again for a better day tomorrow.

Try to avoid even more things that could trigger a meltdown and carrying on living in our new ‘normal’, even though it does change quite often! There’s always going to be bad days, I just can’t wait for the time that our good days will outweigh the bad.

Having just searched for the definition of grief, it’s made me think, our situation could be a whole lot worse, I could’ve lost him when the Doctors predicted he wouldn’t make it.

But he’s here, and he’s mine, and I’m thankful for that.

That being said…Would I change him if I could? Yes. 100%.

I’d change everything I could just to make him happy. Everything I could to help him enjoy his life.

noun 1. 1. Grief intense sorrow, especially caused by someone’s death. “she was overcome with grief” synonyms: sorrow, misery, sadness, anguish, pain, distress, agony, torment, affliction, suffering, heartache, heartbreak, broken-heartedness, heaviness of heart, woe, desolation, despondency, dejection, despair, angst, mortification.