Our daughter Lilly was diagnosed with autism at the age of two and a half.

She has always had anxiety and behavioral issues but medicating her never really crossed our minds until about two years ago, just before her tenth birthday.

Her meltdowns were becoming more frequent and more intense, and at almost ten years old she was becoming harder and harder to manage.

The smallest things would set her off.

She started exhibiting dangerous and self-destructive behaviors as well; scratching, biting, head banging, and attempting to pound her fists against the glass windows in our house.

If she had a meltdown in public, she would bolt without regard to where she was.

I’ve had to chase her across school grounds on more than one occasion so she wouldn’t run into the busy parking lot, and she is FAST.

She also has obsessive-compulsive tendencies, which often go hand in hand with autism, and hers are related to her anxiety.

The summer before she turned ten, our house was filled with stacks, lines, and precise arrangements of her things to the degree that I had never seen before.

She was having two or more severe meltdowns a day that lasted anywhere from ten minutes to over an hour.

We had tried several different calming methods; breathing techniques, essential oils, weighted blankets, and a host of other things that would work for a bit or not help at all.

We were exhausted, emotionally drained, and afraid to take her anywhere, so I made her an appointment with her pediatrician to rule out any medical reasons for this sudden, drastic shift.

When she suggested medication, my first reaction was to refuse.

I had heard horror stories about kids being overmedicated to the point where they could hardly stay awake.

I was fearful that any side effects she might have would outweigh the benefits.

Then I imagined what our next few years might look like as Lilly grew bigger and stronger.

At the rate she was going now, she would be missing out on a great deal of life, as she would always be a risk to herself and others.

I spent hours on the internet researching the most common psychiatric medicines for children, had many discussions with my husband, and we both decided that we owed it to Lilly to at least try it.

We were given a referral for a psychiatrist, who prescribed her a small dose of Prozac and told us that we should begin to see results within six weeks as the medicine would need time to build up certain levels in her body.

Within a week we noticed a small difference.

She seemed more mellow; less quick to fly into a rage.

As the weeks wore on, we began to see the tantrums decrease little by little. She would still have at least one per day, but that was still progress.

She also started Applied Behavioral Analysis therapy (ABA) around this time, and two years later her behaviors have decreased significantly.

She still has her good days and bad days, but now the good ones far outnumber the bad.

For us, starting Lilly on medication was absolutely the best decision we could have made.

We never saw it as a “cure” or “quick fix” for her autism, but rather to help get a handle of some of the anxiety that was the cause of a lot of her outbursts.

We were lucky; she adapted well to the prescription with no side effects aside from drowsiness, which was resolved by giving her medication at bedtime. But, I know the process is not that simple for everyone.

There is a lot of controversies when it comes to medicating children; some see it as a convenience rather than a necessity, and I am sure there are many cases like this.

There are a lot of pros and cons, and it is not a decision that any parent should take lightly.

My recommendation to anyone would be to do as much research as you can, talk to people who have walked the same path, and advocate for what you think is best for your child, as you are the one that knows them best.

Adults have always seemed to struggle with my son, more so since he has got older.

They look at him as if he is something the cat dragged in, physically walk away from him and generally act like he might be contagious.

They talk about him to their friends, and not in a positive way, and sometimes even laugh at him.

Often the older generation are the worst sadly.

But surely children, innocent of all the social complications adults have, unaffected by peer pressure and generally more curious, would be much more accepting of my son?

Apparently not.

I took my son swimming recently. Other children stared, mocked and pointed.

So much for inclusion and a society that accepts everyone.

Even the popular pre-school children’s TV channel CBeebies has a slogan of, ‘Everyone Welcome’, and nurseries and schools pride themselves on being inclusive.

Yet even young toddlers seem to walk away when they see my son.

Disability is more in the community now than ever so why does no-one play with my son, even in the park?

It was busy with plenty parents and children of all ages. Other children were happily interacting with my daughter so why not my son?

Maybe he scares them? Was it his flapping, noises, loud clapping and laughter that put them off? Maybe the fact he doesn’t look at them or reply to them makes them stay away?

Whatever it is it breaks my heart; To see even young children avoid my child just because he is different.

He may have severe autism. He may be epileptic. He may be unable to speak. But he’s just an ordinary 9-year-old boy who loves other children, feels lonely and would like friends.

Why does everyone else either get off the roundabout or take their children off it when they see him approach? Why do children jump off the swing in a panic if he heads in that direction, as if he is some monster coming to eat them? Why does the slide and climbing frame empty if he goes on it?

You can’t catch autism from him. He won’t give you his epilepsy if you sit beside him. He won’t kill you or hurt you.

We still have such a long way to go to see society more accepting and inclusive. We seem to have this notion that if we include the odd child in mainstream who has mild learning difficulties or uses crutches that all is OK.

We think by having ramped access and the odd disabled toilet in places that we don’t need to do anything else.

Is anyone willing to do the hard stuff though? The teaching to children that others like my son are not to be feared. The training of children to not laugh, mock or stare at those who do things or look different.

Would your child be willing to sit on the empty seats beside my boy on the roundabout and say hi to him?

Would you sit there and be comfortable?

Maybe one day I will take a picture of my son on that roundabout with other children all around him as it ought to be.

Until then it makes me so sad when even children avoid my disabled son.

What if this was your child they were avoiding?

“He’s never going to do that!”

“We won’t be able to achieve that.”

“You can’t stop that!”

“There’s nothing else we can do for you.”

So much negativity.

I can really see the difference when we’re attending a community-based appointment compared to the hospital clinic appointments which are always so negative and unhopeful.

For years now, I have literally just listened to this and let it take over my way of thinking.

I’ve let it doubt my hopes and dreams for Zachariah and possibly let it lead our journey.

I’ve accepted things too easily too.

You put so much trust into these Doctors, and sometimes feel they have more valid opinions than you do.

In one sentence they tell you that you no one knows your child like you do, then in another tell you your child’s future.

This is so confusing for parent/carers.

As I have ended up feeling unqualified of being the person who knows Zachariah the best, as Doctors have already written his life story and not been too shy to share it with me.

My head hurts just typing it out!

I also feel Doctors can be set in their way of thinking, and not allow room for other possibilities for a patient.

As Zachariah has grown, developed and changed, I don’t feel much has progressed in particular areas.

Epilepsy is just accepted!

The fact that Zachariah continues to suffer with seizures day and night has somehow become the norm.

The way Zachariah is fed had also become the norm.

With many other things also becoming part of the furniture.

It’s not until fresh eyes examine that new ideas can be suggested.

With this in mind, I’ve been speaking out and asking for new Doctors to take a look at Zachariah and give him a full MOT service so to speak.

I know he’s not a car, but for my brain to process things, I sometimes look at his areas of needs in this way and look at how we can work on them.

With all the talk of Cannabis Oil in the news, seeing how people’s lives had been changed, I had to question our epilepsy journey.

For a year now, we have been told nothing else can be done. I could not accept this.

Last week I met with a new Doctor.

And I could not be more pleased!

To quote my Auntie, ‘He was just so caring, and knew exactly what he was talking about, he really wanted to help’.

He told Zachariah that there was hope to reduce his seizures and only a few avenues had been explored.

We sat and listened to all the information and have come away with a lot to consider.

This Doctor will not know what he has done here, but he has regained our hope, he has given us new opportunities to make Zachariah healthier and happier.

We will be looking into new diets and surgery.

There was a time when the word surgery would terrify me.

I wrote about spinal surgery the other month (which we are still waiting for), and the emotions and anxieties that came with it.

But being Zachariah’s mummy means that I have to quickly adapt to things, and process them in order to keep up.

Zachariah’s needs are always changing, even from minute to minute, therefore an open mind is absolutely vital.

It’s like having another me on the outside, monitoring and questioning everything in Zachariah’s life.

This other me needs confidence to speak up, and own her role as Zachariah’s mummy, and the energy to start a fight when necessary.

This other me had to really put her big boots on recently.

A service was neglecting Zachariah’s needs and things had gotten out of control.

No aims were being met, no goals were being set and things were being left.

With a young boy suffering at the midst of it all.

I had to act and remove him and refer him to another service.

I have no idea if the grass is greener, as we now sit in limbo, waiting for the referral to be accepted.

But sometimes risks need to be made.

I can’t keep worrying about upsetting people, and feeling awkward when speaking up, as at the end of the day, there’s a boy who needs me to advocate for him and ensure he is getting the best out of his life!

Be confident in your role, as your role is the most important one to your child.

And your child is your main priority.

Yes, professionals and Doctors have tremendous knowledge and expertise but they do not live your life, see your pain and struggles and they do not have the love for your child to the level you do.

I could write so much more, but for now…

(P.S. I absolutely love the NHS, and have a lot of respect for all those who form it.)

I was sat in a café a few Sundays ago, a brief oasis of calm in an otherwise hectic and unpredictable week of additional needs ministry and additional needs parenting.

The tea was great (I’m not a coffee drinker!), which was helpful, as I was tired and in serious danger of dropping off to sleep otherwise… there could have been snoring… #awkward

During a pause in sipping and munching (there was also cake, obviously), as I glanced around the café from my seat positioned towards the back, I noticed someone a few tables away from me who was wearing a nice embroidered floral top.

What I noticed, however, was that embroidered in large letters across the back of the top, between the shoulders, was the brand name… ‘Joules’.

I didn’t recognise it and wondered if it was her name, however I understand from those who know about these things that this is a ‘posh’ designer label.

That got me thinking… why would the brand name be embroidered like that on the back of a garment?

The only conclusion I could come to was that it is a status symbol, making a statement to anyone looking at it…

“This is a posh brand, a designer label that I can afford to buy.”

I started surreptitiously looking around a bit more then, and noticed others wearing garments with ‘posh’ brand names and designer labels prominently displayed, some that I didn’t even need to ask about!

Now don’t get me wrong, I’m not against people making an effort when they go out, I just got to wondering about how what we wear, what we look like, might even inadvertently categorise us in some way in the eyes of those who see us, placing us in a particular ‘clan’ in their eyes?

People have dressed to make a point as long as clothes have existed.

One of the greatest human beings ever to grace this earth, Mahatma Gandhi, dressed only in a simple homespun white cotton robe, making a strong political point about injustice as he did so.

As all of these thoughts flew through my mind, I glanced down at what I was wearing.

For the first time I noticed the smear of food that James, my 16-year-old (ASD, LD, Epilepsy) had wiped across my trousers before I went out, and my first thought was that I was glad that it was only food!

I got thinking about what the ‘brand identity’, the ‘designer label’ of the additional needs parent might be…  possibly it’s crumpled smeared clothing, an unusual difficult to place smell, the latest look in the ‘exhausted’ range?

We must sometimes look a bit of an unusual sight!

But it occurred to me that the important thing is what we do, not what we look like.

We give our lives to serve our child, and that is what really matters.

Those words spoke to me, and I hope speak to you as you read this if you too are an additional needs parent…

It really doesn’t matter that much in the great scheme of things what we might look like sometimes, just being somewhere (café, work, the school gate, wherever…) might be an achievement in itself.

As a friend recently said to me “Getting up and having clean knickers to wear is sometimes a bonus… it’s the little things!”

The ‘brand identity’ and ‘designer labels’ of the additional needs parent do not need apologising for, they speak of our love for our child, our willingness to put them first, our never-ending endurance as we strive to do the very best we can for the child that is our first thought as we wake and our final thought as we (eventually!) drop off to sleep.

These are the labels that we are given to wear, and I will happily have that embroidered across the back of my clothing, alongside the smears, any day!

It’s just after 6:30pm and her brother has just had a seizure in the bath.

While her mum pulls him out and dries him her dad rushes upstairs to help.

And she was left alone.

It’s 11am at the retail park and suddenly her brother has disappeared.

Her mum shouts his name and runs to the lift knowing her brother loves them, while her dad runs to the door to make sure her brother hasn’t ran into the car park.

And she was left alone again.

It’s 2:30pm on a Tuesday afternoon and she is with mum and her brother at yet another hospital appointment.

Her brother’s height is taken, his weight measured and the eye specialist looks into her brother’s eyes while talking to mum in words she can’t understand.

And it feels like she isn’t there at all, even though she is.

Life feels all about her brother.

She can only go places if HE is well enough, if HE can cope with it, if there is provision for disabled children.

She hears others at school talk about zoos, trampoline parks and ice-skating rinks but she has never experienced those.

She could tell them about tonic clonic seizures, communicating with a non verbal brother or what an occupational therapist does.

She knows that isn’t what anyone wants to hear about though.

So she just stays quiet.

She does her own thing.

She finds her own way of coping.

She is the epitome of resilience, the definition of bravery, the personification of inner strength.

But she’s lonely.

So very lonely.

She’s typical of so many siblings lost in the shadows while the limelight shines on the sick sibling, the disabled brother, or the struggling sister.

Expected to carry on with homework while her brother screams, to try and watch TV without complaining while her brother has a meltdown, to still sleep while her brother bangs toys throughout the night because he sees no need for sleep.

These are the siblings whose loneliness we don’t like to see.

We don’t like to admit that disability affects the siblings as much, if not more, than the child who is diagnosed.

It makes us uncomfortable to think we have caused an innocent child to experience mental pain while we care for the physical pain of another child.

We hope beyond hope that things will settle and one day we will ‘make it up to them’ for the times we couldn’t make their school play because their brother was sick or in hospital. But that day never seems to come.

So she just carries on.

Until one day she says ‘it feels like I am invisible sometimes.’

Then you realise the utter loneliness, the repeated rejection she had felt and the fear she experiences daily.

You vow to change things but nothing, nothing, will take away her loneliness.

I promise you siblings, you are NOT invisible.

You are the real hero’s in all this.

You are the ones who’s smile keeps everyone going, whose humour brings life and whose strength inspires.

You may feel lonely but you are never alone.

I promise you so many other siblings understand and they have been where you are.

You got the raw deal here and I’m sorry.

We started Blended Diet!

After deciding 2 years ago that Zachariah needed to have a gastrostomy due to unsafe swallow and accepting that he would be fed milk through a tube for the rest of his life I never thought I’d cook for Zachariah again.

Going through all the training and receiving the post gastrostomy information it all looked so black and white.

By this I mean there was a fixed plan that all families follow:

Decision

Surgery

Milk Diet

Pump/Bolus

Less reflux/Chest infections

It all seemed very simple and set in stone.

There was no talk about still feeding Zachariah his meals, but at a much runnier texture through his tube, so I thought nothing else of it.

If anything, I was relieved. No more struggling to feed him, no more prepping his meals.

We had the benefits of feeding on the go and having all his feed delivered and ready to give.

We were assured that the milk contained all the nutrients Zachariah needed.

Life seemed less chaotic and therefore I had time to focus on other areas in Zachariah’s development.

A year later whilst at an event, (Kidz Up North), I got chatting to a lady who was feeding her son via tube, but not in the same way I fed Zachariah.

I was intrigued so started to quiz her on what she was feeding her child.

With much excitement, the lady was more than happy to talk about her son and how he was in fact being fed food that had been blended up!

My face must have been a picture, because I was literally shocked that food could be put through the tubes.

I had never been advised this.

After much of a discussion I was educated on the Blended Diet and the great benefits it offered to children with reflux difficulties and intolerances.

The lady told me how her son had been taken off reflux meds due to the change in diet and was now a much healthier, happier boy, and then directed me to the Facebook group to find out more.

This is where Facebook really does benefit people, as it’s a platform for communities to offer/receive support.

I followed the page and read all the different stories, families sharing their victories with weight gain, reflux, constipation and general health.

It was all great but I didn’t see how it would benefit Zachariah.

He had meds for reflux and seemed to be tolerating his feeds quite well, he was a good weight.

I didn’t believe blended diet could change his life in any way.

But was definitely intrigued to try but not yet!

I needed more research, more discussions, more encounters with families face to face and just more thinking time.

I didn’t understand why it had not been suggested by the dietician and surgeon when he has his operation.

There must be a reason why Zachariah was given milk rather than Food Diet.

But then life happened, we found out we had lost our second son.

Everything went to mush!

We literally plodded on through life, therefore unable to focus on anything new or different.

We leaned on the milk as a safety net until we were ready to commit

That was until a few weeks ago when I saw some friends and their little boy, who I hadn’t seen for quite some time due to illnesses and business of life.

Previously, through messenger, they had told me there was talk about a Trachy and described how poorly he had been.

So, it was the most amazing surprise to see him looking happy and healthy and to be told the operation was no longer needed!

I obviously asked why! And was told that he had started Blended Diet doing tremendously.

There was no way I could witness this and not do something!

With this amazing story, and Zachariah’s Gastro Consultant suggesting it instead of increasing his meds I had to act

So today, 31st July 2018, we had a meeting with the Dietician and got Zachariah back on food!

I’m terrified! I’m overwhelmed!

But I’m supported and can see how this is going to benefit Zachariah and hopefully reduce reflux and constipation and get him off some meds!

It was the most precious tea time as I cooked Zachariah a nutritious meal, but also the most surreal moment syringing in food rather than milk being pumped in!

Sometimes in life, we need to be challenged, we need to see things from a different perspective and re-evaluate things.

Especially with children who have medical needs, as things are always developing in the medical world, 19 months ago, Blended Diet was not something I had heard of, but now it’s a huge life changer that is now being advised by professionals.

Not all children will be able to tolerate food, but for many this will be a child’s new medicine.

I had found out today that I was never advised Blended Diet as it is not recommended by the manufacturers of the Mini Buttons, it all makes sense now.

So, I thank all those parent/carers who have shared their stories on the Facebook page to help families like mine, make this life changing decision!

Let the adventure begin!

On July 5^th, 1948, the National Health Service was born.

My father was all of 6 years old, only a year younger than Sam is now.

It’s actually quite hard to imagine a time when it didn’t exist, it’s always been there in my lifetime. This is what the NHS means to me.

At the end of WWII my grandfathers returned to the wives they’d had to leave behind; it was the first time Bert Allen met his young son Roger… my father.

Roy Potter returned home and a few years later my uncle and mother were born. Over the years the NHS has cared for three generations of women in my family during pregnancy, labour and birth.

They have supported us through cancer twice, autoimmune disease, major surgeries and dementia.

They have saved my mother’s life twice due to pregnancy/birth complications; my life has been saved three times – a DVT at 24, complications during a traumatic delivery at 32 and serious illness at 37).

An observant young paediatrician examining me shortly after my birth identified that both my hips were dislocated as the joints hadn’t formed.

Thanks to that Dr, I was spared a lifetime of surgery, pinning and repining the hip joint with all the disability and pain that would come with it.

Without the NHS, my beautiful niece wouldn’t be here either.

She and her mother would have died during a difficult and prolonged labour which resulted in an emergency C-section.

My future husband would have been unlikely to survive a serious bout of appendicitis at 16.

All of this care has been free at the point of delivery; regardless of the ability of an individual to pay, it is given based on clinical need.

And then in 2011 Sam was born. Without the NHS he would not have made his first birthday.

He would not have the amazing VNS implant which has changed his life in the past year; we simply would not have been able to afford it.

As a child with life-limiting/life-threatening disabilities, getting insurance to cover him would be almost impossible his monthly medication bill is astronomical.

Without our NHS, my family wouldn’t exist.

It is not perfect but I wouldn’t want to be without it for anything.

Happy birthday, NHS. And thank you. For everything.