Additional Needs

Room For Seconds?

Posted by Rochelle Followes on 21st August 2018 Additional Needs, Advice & Support, Disabilities

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“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.)