What you should know about Special Needs parents

Becoming a special needs parent has changed me. The flippant comments about raising a child with a disability sometimes makes my blood boil and at times I wish I could say how it really is.

What better way to tell you what you should know about special needs parenting;

You won’t know what it’s like to raise a special needs child unless you have walked in our shoes and even then, no two children are the same.

You will never understand watching your child laying in a hospital bed struggling for life; you will never understand wishing so much that it could be you instead of them.

You will never feel that overwhelming feeling of hope when they reach the tiniest milestone like holding their head or reaching out for you.

Special needs parents find an inner strength to take on the world and fight for everything for their child, even if it improves their child’s life by 1% they would take on a whole army to get it. From equipment, appointments, referrals, places at special school everything is a constant battle, but they will never give up. They are their child’s advocate and voice.

Never say to a parent of a special need child that you don’t know how they do it!

I have had this said to me so many times along with “special children are given to special people.”

My reply, I don’t have a choice! What is the other option; you would do anything for your child right?

I wouldn’t change her, I may wish I could take her challenges away but I would never not want her in my life.

Google is also our best friend and our worst enemy. The love/ hate relationship I have is on-going.

In the first year it was my worst enemy, I was in denial, I felt low, and I couldn’t accept how our lives were going to change. I would spend nights researching, not liking what I was reading so searching more in the hope I would read something that would give me a glimmer of hope.

This last year our relationship has been on better terms, I have learnt to only search when I really need too and not to ponder too much on what I find. Every child is different after all.

Special needs parents may look strong on the outside, but all, at some point have cried an ocean for their child.

The guilt of not being able to take away their child’s condition or asking why them? They would never let you see, and if they do they would wipe away their tears and carry on.

Sleep. Special needs parents don’t sleep. If they aren’t up searching the net for answers then they are giving meds, flushing tubes or battling with the sound of the feeding pumping alarming.

If, on the rare occasion their child is asleep then they are worrying that they are poorly as they never normally sleep.

You will find that special needs parents know more about their child’s condition than the doctors.

That’s because we are our child’s advocate and it is our full time job to know absolutely everything. I have often sat and explained to the professionals how my child’s condition affects them and have walked away questioning if our roles had reversed in that appointment.

We keep our network of friends tight, sometimes the friends we thought we had slowly disappear due to us not being as available as we once were or sometimes they just don’t know what to say.

I have a close set of friends that I can count on one hand that I know I can call when I need them but equally know to leave me be when I want to be alone. I also need to be around positive people, no glass half empty friends here but those that are full to the brim.

Our lives are constantly in the fast lane, there is always physiotherapy, appointments, feeding, tube changing, meds to give and that’s just our child with special needs child. Add into the mix our other children, our husband, running the house there is not much time to sit down and relax.

On the rare occasion we do, we feel guilty that we could be doing more for our child.

Lastly, special needs parents are normal people who enjoy doing normal things.

Our lives may be different to yours but our life is our normal and we are grateful we have one.

Horse riding therapy

I soon realised in this unexpected world of special needs, activities I had enjoyed with Isla’s older sisters were now off limits.

Dancing, gymnastics, athletics and cheerleading were the ones I had previously known like the back of my hand.

They were the same ones that I now knew Isla couldn’t participate in. These types of co-curricular interests were difficult because of Isla’s poor motor skills, limited social skills and sensory dysfunction and everything else that comes along with 2q23.1 Microdeletion Syndrome.

What we did try was not enjoyable at all and actually was really stressful for both of us.

We then began to seek out activities where Isla would feel competent and that would help all those skills Isla needed to work on. But I soon realised there wasn’t much available.

When (after a couple of years on the waiting list) we got called up by the charity, Riding for the Disabled (RDA) we were thrilled.

I didn’t know how Isla would be around horses. On the first day we were a bit hesitant. The volunteers soon put us at ease and made it a successful day.

Having a visual with the horses and her name on a board appealed to Isla.

Even now she still goes directly to the board to find her name and see what horse she is on and who her side walkers are.

The process of getting to meet with the horse before jumping on worked well for her.

It was soon pretty clear that this was going to tick all the boxes for us. It also had some unexpected benefits.

Number 1 

Social skills and Sensory Dysfunction 

You wouldn’t think these two would be linked right?  They are because being on a horse allows Isla’s sensory needs to be met. This allows her to practice her social skills by conversing with instructors.

It’s pretty hard for Isla to have an ongoing back and forth conversation with anyone. It makes her feel really uncomfortable. She can’t meet people’s eyes and she needs to move around.

When she was younger I realised the best conversations we would have were in our spa pool at home. So when on the horse, just like being in water, Isla’s sensory system is calmed.

This allows her to focus on talking without having to deal with regulating her body.

The main way you can see this is by the lack of stimming. When riding this is pretty non existent. Isla normally bites her hand and makes the “eeeee” noise when excited.

I know she is happy when she’s on a horse but the feedback she receiving  is enough and she doesn’t need to “feel” her excitement. Also the fact that her hands are occupied with the reins or holding on doesn’t give her the opportunity.

Number 2

Motor skills

Isla has dyspraxia. She finds writing difficult, dressing difficult, turning clothes from being inside out to the right way virtually impossible.

She lacks the motor planning needed to undertake these tasks. The therapy to help with this is creating mind body connections while strengthening her muscles.

The exercises that she practices each week, for example standing in the saddle, all help her create new pathways. It also helps in strengthening her core and other muscles.

Steering, listening and remembering instructions, balancing, even being able to tolerate a helmet on her head, all go towards helping Isla having a stronger mind and body.

Number 3

Network of support

Sometimes having a child with a disability is isolating. It’s hard to know where you fit in to be honest. That applies to both Isla and I. Through Riding we have made connections.

We have made connections with the instructors who are passionate about what they do. Isla also thinks they are “really nice”.

Isla has made connections and bonded with other children. They also enjoy doing what she enjoys without the pressure of having to socialise in a typical way.

For me, I have made connections with other mothers (and sometimes fathers) and it allows us to talk about things we are going through and receive support. On the flip side, we celebrate achievements and progression in development which are easily recognised by other special needs parents .

Number 4

Achievement, Self Esteem 

For a little person who struggles with most things for them to feel like they are accomplishing tasks is so important for their self esteem.

When Isla writes a letter to her horse and receives one in return, especially for her, it makes her feel really special.

Receiving a ribbon at Ribbon Day for everything she has achieved is a huge boost to her self esteem and she feels so proud.

Riding for the Disabled is a charity in New Zealand.  It provides goal-based riding activities that increase the ability, strength and confidence of people with physical, intellectual, emotional and social challenges.

A tale of two worlds

My family and I live between two worlds –the ‘normal’ world of day to day life, just the three of us.

We know our child is disabled, but here that’s what we’ve used to. Going out to familiar places as a family is the same, we feel secure and on home turf. My husband will tell you that I’ll speak to anybody and he isn’t wrong!

I adore my boy, he is gorgeous, brilliant and is worthy of being noticed, loved, and included.

And then there’s the Other world. It’s a world of abbreviations, meetings, and or collecting consultants/specialists like others may collect shells.

Its form filling, having to grit your teeth and put down on paper exactly what your beautiful child cannot do. For a family so focused on what he CAN do and IS doing, this cuts deeply.

Recently we had a team around the child (TAC) meeting; an afternoon of us discussing with Sam’s teachers, school nurse, disability social worker, OT, physio (and the rest) how to best support him and allow him to reach his full potential while ensuring that he is safe, healthy and happy.

While we are immensely lucky to have a team who genuinely love our boy and want to help him achieve, these meetings act like a sharp kick which shatters our fragile little bubble so carefully built around ourselves and which acts as our shield.

Now don’t get me wrong. I don’t live in blissful ignorance and am fully aware of his challenges, complexity and disabilities.

But when we’re at home or with friends and family, they don’t seem to matter.

He’s just our Sam. When faced with the cold reality that your beautiful child is one of the most severely disabled of children however, it is somewhat tough to keep it together and not fall apart.

Suddenly he isn’t just our baby; he’s a medically fragile, complex child and his prognosis is uncertain to put it politely.

We are not alone in this; its something I think every Special Needs parent can identify with.

Maintaining the balance is incredibly tiring, reacting immediately when the you-know-what hits the fan while maintaining that balance point is downright impossible at times.

So tonight, while the Dude and his Dad are snoring away softly in hospital (sleep study), I will be taking the chance to get to bed very early… with any luck I can replenish some of those reserves before it all starts over again tomorrow!

Disabled changing facilities

When you’ve never encountered the world without a wheelchair you take so much for granted.

Since having Amy I take nothing for granted.

Before I had her I didn’t even know what a hoist was. I didn’t notice that some places only have steps. I hadn’t even stopped to think that most disabled toilets aren’t actually suitable for everyone with a disability.

Until you are immersed in something you don’t realise the necessities and actually how much needs to change so that everyone can lead an accessible life.

Can you imagine being on a day out only to find out there is no toilet at all except for at your own home? There would be outrage!! So why does it have to be different for people who need a bit of extra help?

Just because no one in your life needs those toilets does not diminish the need for these very important facilities.

Someone once said to me, “before knowing you and Amy I didn’t think twice about parking in a disabled bay just for a few minutes”. I was gobsmacked!! Just because they didn’t directly know someone who needs these spaces doesn’t mean that they aren’t needed.

It shouldn’t take someone close to you becoming disabled for you to recognise the needs of others.

People always  think “that will never be me”. I was that person once.

There is no one person on earth who is immune to the fact that one day they may require help with their mobility.

People are living longer, more poorly babies are being saved, and it’s great to see that some places are starting to recognise that we all have different needs and different ways of doing things.

I had a moment of ignorance recently and when I realised my error I felt quite ashamed of myself. There was a post on social media about how people are buying radar keys online so that they can go to any disabled toilet.

Fair enough if you have a disability but this is actually people with no disability. There were even parents of babies saying how they want access to changing places for convenience… even though they have their own facilities.

I was so angry. The discussion went on and someone explained that their local Changing Places could be opened from the outside even when the room is occupied and that this is a dignity/privacy issue for the person in the room

So I chirped in saying how good it is that some of the ones we have used have required us to go and get a member of staff to let us in so that the system cannot be abused.

To me this was a perfectly acceptable and efficient way to make sure the facilities don’t get abused.

Someone replied to say that actually… by the time they have been to reception to get the key, and got in… it could be too late for some people and actually you shouldn’t need to know so far in advance that you want to use the toilet.

In my situation as a mum with a child who has no mobility and needs hoisting and has nappies, I hadn’t stopped to consider the needs of people who use the toilet and may have continence issues that require that they get to the toilet quickly but also need a hoist.

It made me think about how diverse disability really is. I often think of our situation as the most “severe” due to the level of need and lack of continence etc, but I am overlooking a big cross section of the disabled community.

I apologised to the person and agreed that there is no easy way to man these facilities to prevent abuse. It’s like how there are so many invisible disabilities too… because Amy’s disabilities are obvious (wheelchair, splints, tubes etc) I show no shame when joining the queue in Primark to be served quicker… and yet people really stare if someone without mobility equipment joins the same queue.

You just don’t know someone’s situation.

I am still learning everyday, and viewing the world through mine and my daughter’s eyes isn’t always effective. We need to all be more aware.

Every time we visit somewhere that has toilet facilities with a hoist and level access changing table I make a point of contacting that venue (be it a supermarket, a zoo, anywhere) and let them know how grateful we are for their commitment to including all.

Places need to know how valued they are by doing this – yes it’s a lot of money to front for a minority… but it can transform the lives of others.

Recently we went on a day out as a family to a farm. We were having a fantastic time. Amy was in good spirits and when she’s happy the feeling is infectious. We were happily out in the world making memories just like everyone else.

And then it happened. The need for a full outfit change.

I had previously done a full outfit change at this farm and remember the lack of space, and the wobbly changing table that probably wasn’t safe for her weight. I remember leaving the wheelchair outside the door and hoping that no one stole any of her equipment or iPad. I remember having no space to manoeuvre her and how much my back hurt leaning over her. This isn’t an option for us now.

I know she isn’t huge, I still lift her a lot.

But she is very long, and her movements very unpredictable… we need space to keep her safe… baby changing tables are for babies, and my child is definitely not a baby.

So we cut the trip short… we checked to see if there were any places locally (there’s an app I didn’t know about that Phil had downloaded!) and there weren’t any nearby. We were disappointed as we were hoping to stay out for the whole day but sadly that’s how it has to be sometimes.

So, thank you Sandcastle waterpark Blackpool, Chester Zoo, Manchester Arndale centre, The Trafford Centre, Tesco in Hattersley for making our lives so that we can have a day out like everyone else.

Thank you also to the places we will visit – specifically because you provide what we need.

It may be a dent in your bank balance, but to others it is priceless.

I hope many other places follow suit, or even better – I hope that it becomes a law that there has to be a certain amount of full spec facilities per so many miles so that no matter where you are you never have to travel far to do what everyone else does without even a thought.

As special needs parents, we carry a lot

Our bags and purses are full. We have to carry formula, syringes, medication, diapers, emergency protocols, datebooks, diapers and wipes, extra clothes, medical supplies, and more.

I know that at any given time I can fish around my backpack and find an extra g button, water flush, and drool bib. I can also locate some hand sanitizer or skin cream if necessary.

Not only are our bags full but our car is full too. We keep extra supplies along with our child’s wheels in the trunk of the car.

We have toys, books, and other “just in case” items strewn about our cars as well. I’ve learned my lesson and always keep a small amount of cash in the glove compartment in the event I forget my wallet, and have to pay for parking at an appointment for our son with change from the cupholders.

We have to carry a lot. It’s never easy to leave the house.

But what’s even harder is going to bed and unloading our shoulders.

First we have to take off the worry. Did I make the right decision? Did I do enough today? Did I do too much? Did I spend enough time working on his strength or his fine motor or his communication? Did I spend enough time just being “mom” instead of nurse or therapist? Am I honoring his wants and needs?

The worries take awhile to take off.

Then there’s the fear. What if?

What if he’s coming down with a cold? Should I have taken him to the busy fair or park or museum where the germs are everywhere? Will I regret the choices I made today? What if he never says a single word or walks? Or much worse, what if we lose him?

The fears are really hard to unload.

Let’s not forget grief and sadness.

Grief of seeing other children doing the things you wish your child was able to do. Grief of knowing your life is not what you imagined. The sadness of watching your child struggle daily to do a simple task or activity. Sadness knowing there are countless things your child will not do in life.

Somedays sadness doesn’t like to come off either.

There’s more, depending on the day. Jealousy, anger, frustration, and loneliness.

Unloading the things we carry can be difficult. And sometimes we carry it around so long that it just becomes part of who we are.

There are extras we carry too. These are the most important, the ones I try to load up on when I wake.

Every morning I walk to our son’s room to pick up his 35 pound body and carry him downstairs, and with each step I can feel it.

As I make my way down the hall and down the stairs I start carrying more than just him.

I carry gratitude.

I hold on tightly to joy.

I love deeper than I ever thought possible.

I am forever proud of who he is and who he shaped me to be.

I hope.

We carry a lot. Yes, there’s a lot we’d like to unload as parents of children with special needs, plenty beautiful but there’s extras we gladly carry.




Infantile spasms, seizures and us

One of the most important things we were possibly told as we left NICU when Jaxon was a month old was that he was at risk of developing seizures at some point in his life.

Not just a little bit of a risk, there was a whopping great big likelihood that Jaxon will receive some sort of Epilepsy diagnosis somewhere down the line.

It wasn’t a definite but with his brain damage being so severe it was distinctly probable.

From that moment on I watched like a hawk, ready to deal with the situation should it arise. If one day Jaxon were to collapse, begin foaming at the mouth and start moving uncontrollably I would remain calm.

Only, the more research I did, I realised it might not be like that. If Jaxon had a seizure it likely wouldn’t present like it does in the films. It could be something as simple as a twitch or a head drop, it might be an eye roll or smacking of the lips.

The chances of it being what I’d imagined was actually quite slim.

Both a blessing and a curse.

I didn’t want to see Jaxon have a great big seizure but now the fear was different, if he does indeed have seizures they may be so subtle that I’ll miss them.

I spent hours upon hours researching. I watched videos of what different seizures looked like. I read what the symptoms were. I learnt the names. Focal, Myoclonic, Absence. I learnt that Tonic Clonic is the name for the seizures that I believed were typical Epilepsy.

Then, “Infantile Spasms” popped up. I was drawn to this as it sounded like it was something that affected babies or young children.

I read and read. It was terrifying. It was quite rare though. It did occur more frequently in children who had suffered a hypoxic injury but it was still uncommon. I read how if Infantile Spasms was to arise that it’s a medical emergency.

It can affect development and in some cases it has been known to cause children to regress back to newborn level.

We’d been through so much, surely this wouldn’t happen to us.

I thought I was just being overly anxious. I knew what to look for but I told myself it was likely I’d never need to know. If Jaxon was to develop Epilepsy it will probably be when he’s quite a bit older.

Then, a couple of months passed and I noticed Jaxon displaying some unusual movements. He has such severe reflux that I attributed it to that. But I couldn’t get the stories I’d read and the videos I’d seen relating to seizures out of my head.

Could these be seizures?” I asked Jaxon’s Daddy. He shrugged. He was as clueless as me.

Over the next few weeks I tried to capture his unusual movements on video. By the time our next appointment with the paediatrician came around, I was a nervous wreck.

I’d convinced myself Jaxon was indeed suffering with Infantile Spasms.

I showed the paediatrician the evidence I’d built up over the previous weeks but she wasn’t convinced. She explained that his movements weren’t typical IS.

I felt frustrated, I’d seen so many videos and whilst Jaxon’s movements weren’t the typical jack-knife motion that comes with a spasm they did look suspicious, there were a lot of similarities with other IS videos I’d watched and I didn’t want to rule it out without an EEG.

She agreed to arrange a 20 minute EEG if I felt that it would put my mind at rest. I wasn’t convinced it would pick anything up, what if he slept through the whole thing?

But it was all that was on the table at that moment so I took it.

I asked if anything suspicious showed what would happen next. What if it didn’t give a clear answer? She explained that if it was IS it would more than likely show within those 20 minutes as IS has a specific brain wave pattern which is a clear characteristic in diagnosing.

The EEG appointment came through a week later and we only had to wait another couple of weeks or so before our appointment date. I asked on the day if the lady who carried out the test could tell me anything. As expected, she told me that she couldn’t and we would have to wait for the results.

One week passed by, then two. The spasms were increasing in both frequency and duration. I wasn’t happy with how long it was taking to get the results. Jaxon had a particularly bad weekend and I managed to capture numerous clusters on video.

By this point I didn’t need the results from the EEG. I knew what we were dealing with, I knew it was Infantile Spasms.

First thing Monday morning I called the paediatrician’s secretary to chase the results. She explained they were still not back so I told her that the next cluster he had, I’d catch it on video and take him straight to A&E.

I couldn’t afford to wait any longer, Jaxon needed treatment, who knew what damage was being done each time he had an episode?

She agreed this was the best course of action and just a few hours later, as expected he had another 15 minute cluster.

I recorded some of it on video, packed a bag, got him in the car and drove to our local A&E department. We have open access to the children’s ward but I’ve been advised previously that if I suspect seizures go to A&E first. The nurse said she would take us up to the children’s ward and the doctor would see us there.

We were shown to a bed on the assessment unit and waited half an hour for the doctor to see us. He took one look at my video from that evening and instantly validated my concerns. He told me he believed they were Infantile Spasms and the best course of action would be to admit Jaxon and chase the results, if they came back confirming IS then treatment could be started straight away.

It took another three days to get the results, during that time he had to have several doses of Buccal Midazolam, rescue medication, as he was having over 50 spasms a day.

Prior to this the doctor spoke to the lady who carried out the EEG to ask if she remembered anything specific from that afternoon.

She told him that Hypsarrhythmia was present, the pattern that is a clear characteristic in diagnosing Infantile Spasms.

I was so angry, if she’d told me that the day we had the EEG done I wouldn’t have waited another two weeks to get the results.

We received the diagnosis that I’d feared but expected and treatment commenced straight away.

Gradually I saw the baby that I’d brought into hospital fading away due to the medication. He was sleeping all the time, he was losing his suck and swallow that he’d worked so hard to develop, his head control became non-existent, his reflux got so much worse due to the steroids and in the moments when he was awake he wasn’t really alert.

I hope these side effects are all just temporary. The medication that is being used to treat the IS can cause blindness, pain and confusion.

What a horrible double edged sword.

Either I allow him to have the medication that comes with some pretty shocking possible side effects or I leave him to continue having the spasms, likely causing irreversible and serious damage. It’s a horrific position to be in.

Three weeks on and the spasms have stopped completely, thankfully. Jaxon will be on the medication for another couple of months at least before a repeat EEG is carried out to see if the Hypsarrhythmia has gone.

He is still having other types of seizures that occur daily but nobody seems to really know what they are. They look like Focal seizures but hopefully the repeat EEG will tell us more.

So this is our journey with Epilepsy so far. I’ve got a feeling it’s going to be a long and bumpy ride, with many twists and turns.

A ride that I wish we could just get off right now.

A different life – lessons learned from a Special Needs mama

A few weekends ago my husband and I celebrated our anniversary with a night away in a lovely hotel.

We very rarely get to go out together as having two boys with additional needs means it is difficult to get childcare. While we were away it felt like a little escape and I started to think about what our lives would be like if we hadn’t entered the world of being special needs parents.

I felt a bit guilty about this but I was thinking I’d have a wardrobe full of trendy clothes, I’d be able to take long bubble baths, I’d visit lovely restaurants with friends, I’d travel the world and see new places, I’d have a career, I’d get a full night’s sleep every night, my back wouldn’t be breaking every day due to all the lifting I do.

As I was thinking about this different life and feeling guilty I also asked myself the question of would my life be fulfilled if it was different?

Would I be the person I am today? You see my boys have taught me more about life than anyone else – here’s just a few little lessons they’ve taught me.

Take one day at a time – I think this is the most valuable lesson my boys have taught me.

Before my boys came along, I was a really stressed person. I would worry about the small stuff and I liked to plan ahead. I liked to be in control but my boys have shown me that life doesn’t always follow a neat, straight path and that’s okay.

They’ve shown me that it’s okay to be scared of the future, it’s okay for things to change, it’s okay to have no clue about how you’re going to get through the next week and it’s absolutely okay to just get through one day at a time.

There’s something quite freeing about just taking each day as it comes, something freeing about removing the pressure of having everything perfect all the time and I wouldn’t have learned this lesson if it wasn’t for my boys.

I’m stronger than I think – my boys have taught me what real strength is.

They’ve shown me that even on the hardest, darkest days we still make it to bedtime and we still get up and do it all again the next day.

They have taught me that I can hear the worst news from a medical team and I can still keep it together and get the jobs done that need done. They’ve shown me that real strength is nothing to do with someone’s physical condition but is more about having the courage to face the everyday challenges with a smile.

They’ve shown me that I can face anything because they need me to, I can carry the universe on my shoulders and walk with a smile. They are the reason and without them I would not have the strength I have today.

I’m happier – my boys have definitely made me a happier person.

I laugh every day because it’s the only way to do this life. They make me laugh daily and even on the toughest days I can find one thing to laugh about.

They’ve taught me to see humour in the small everyday things and that is the best way to go through life – laughing until your sides hurt!!

So maybe in a different life I’d have it easier but I don’t think id be fulfilled and I certainly wouldn’t be the person I am today.

Every child needs a childhood

‘Every’ is the key word in that sentence.

But you go to a park and what is there to play on for a child with special needs? In most parks, the answer is nothing. In very few parks, the answer is a basket swing. There is little more than that. And how is that fair?

Every child wants to be able to go to a park and play.

How hard is it to add a few pieces that children with additional needs can use? Whether that be a swing that is suitable for a wheelchair, or a swing that can be adapted when using a seat; a round-about that has a space for a wheelchair, or musical/interactive toys; these pieces of equipment are so valued yet so sparse.

Very few places we have been to have had play areas suitable for Alfie, yet the parks that have equipment have been amazing. Not just for Alfie and other children with additional needs, but for ALL children. What child doesn’t like to be able to play with musical toys or interact with other children?

I’ve lost count of the times my heart has broken when Alfie hasn’t been able to join in with Rory and they are not even 3. When all Alfie can do is go on a swing, he is bored within 10 minutes. Yet, if the park had a section with steering wheels and play panels and musical play sections, Alfie would have as much fun as Rory. Not only that, but any child could use the equipment. Not only is it suitable for children with additional needs, it is fun, exciting and different for every child.

After all, children love to make noise and be imaginative.

There is little more exciting and fun for a child than to be able to be as noisy as he likes and free to be creative. To make a park adaptive, accessible and fun doesn’t need to be expensive and complicated, it just needs a little bit of thought, and that little bit of thought goes such a long way.

Not only does making a park accessible mean that children with additional needs can join in, it can help to educate every child. Sensory and musical equipment can educate children, teaching them new skills that are vital for development.

So please, take a look at your local park, is it accessible and inclusive? If not, who can you ask to make a change?

After all, every child needs a childhood.

I’m not amazing

One of the things that is said to me on a daily basis, be it by friends, family or caring strangers who follow Jaxon’s Journey is that I’m amazing or something to that effect.

The truth is I’m not amazing. I’m nothing special. I’m just a regular first time Mummy who has been thrown into the daunting world of caring for a child with a lot of medical needs.

Don’t get me wrong, it’s nice to be told that my efforts aren’t going unnoticed or that my strength and determination to fight for my child inspires others. When I’m having a down day and I receive messages such as these they lift me, they keep me going and encourage me to keep pushing forward when I feel like my energy reserves are on zero. Some of the kindest, genuine, most empathetic people follow Jaxon’s page on Facebook from around the globe and daily their comments fill me with confidence, love and hope, especially when these things feel in short supply. I wear my heart on my sleeve, I’m an open book in the hope that sharing our story and raising awareness may reach somebody in need and allow them to feel a little less alone on whatever journey they’re on. I’m a fixer, I like to help people. I’ve always been the same.

But that doesn’t make me amazing.

It’s a daily battle to access the services Jaxon needs, it’s a never ending cycle of appointments, phone calls, emails, letters and research. It’s tiring, it’s monotonous and the future is pretty terrifying from where I’m sitting. But no more than we asked to be dealt this hand, Jaxon didn’t ask to be born, he didn’t ask to be brought into this world with a handful of complex diagnoses that come with a truck load of uncomfortable symptoms.

On the outside it might seem like I totally have it together and I’m coping with every single challenge that is thrown our way. But on the inside it’s very different. Behind closed doors I scream and shout, I snap at those closest to me, I push people away. Many a time I’ve collapsed in a heap, the weight of my emotions too much to carry and I break down uncontrollably to the point I can barely catch my breath.

Then eventually, I pick myself up, dust myself off, take one look at Jaxon and carry on because he needs me.

But that doesn’t make me amazing.

I battle with constant inner turmoil. I ask the questions “why me?” “why him?” “what if?” “what did I do that was so wrong?” Not because I’m anything special that makes me immune to the pain that the world of caring for a special needs child has brought me. Not because I’m anymore deserving of a child that doesn’t have complex needs. But because Jaxon doesn’t deserve this. He’s a tiny baby who deserves a shot at a normal, pain free life just like every brand new baby.

I will always feel some level of guilt for his hypoxic injury. I will always wish I did something sooner to prevent the vast damage to his brain. I will always wish I wasn’t talked out of being induced by a doctor who was supposed to know best. I will always wish that I hadn’t talked myself out of going to the hospital earlier on the day he was born. I will always wish that the fear of coming across as an overly anxious first time Mum didn’t invade my thoughts hours before and prevent me for making the call to the hospital hours sooner.

That guilt will always be a part of the driving force behind my determination to do everything in my power to ensure Jaxon has the best life possible and that he reaches his full potential. I will give every inch of my energy, my love, my everything to give my son the best chance of a fulfilled, happy life.

But that doesn’t make me amazing.

I’m just me. A Mummy trying to do her best for her son.

I see where the comments come from, I see why people do tell me that I’m amazing, that they’re inspired by me or that they’re proud of me. I see it because when I read blogs by other special needs parents I think exactly the same about them. I read their stories and I think “wow, you’re amazing. How do you do that?”

I read stories on my Facebook timeline by Mummies and Daddies of neurotypical children. I see their hardships, their rants and the way they deal with their challenges and overcome them. I read in awe as I think to myself “amazing”.

Me fighting for, caring for and loving my son doesn’t make me amazing. Everybody is fighting a battle behind closed doors, no matter how big or small. Everybody is facing or has had struggles in their lives. Nobody is immune to pain and suffering. The tough times don’t discriminate. I’m no different.

The truth is we’re all just trying to do the best for ourselves, our families, our children, our friends, those in our lives who we love.

If that makes me amazing, then you’re amazing too!