Non-Verbal Communication

When pregnant, as a mother you get excited for your baby coming. You imagine what life will be like.

You cannot wait to see what they will look like and what their personality will be like.

Somebody always says “I wonder if their first word will be mum or dad” and you joke along with them about how after 9 months of carrying them you hope it’s mum.

You never for one minute imagine that they will never be able to speak. Nobody prepares you for life not to work out that way.

Does every child not meet the milestones that all these new parent apps talk about? All babies should have said their first word by the age of 9 months, right?

My son Ryan is non-verbal.

He has never spoke a word and I have never had the pleasure of hearing him shout mum or dad. Ryan has cerebral palsy – that means that he finds it hard to coordinate the muscles around his mouth and tongue, enough to produce speech.

As his mum, I am very realistic of what kind of lifestyle is ahead of Ryan and I have come to terms with the fact he won’t be able to speak. That being said, if I had the chance to give him the opportunity of anything it would be the ability to talk.

I would want nothing more than to say to him I love him and to hear his precious voice say it back.

At the beginning I was terrified at how we would communicate with Ryan.

How would I ever know what he wants? What if I got what he was trying to say wrong? How would he be able to make his needs shown when he was not with me or his dad?

3 years on and that fear does not exist. Ryan has no control over hand movements so Makaton sign language was not an option for him to use as a way of communicating back to us.

Ryan now communicates through facial expressions, body language and he vocalises with shouting. There is nothing more heart-warming than walking into a room saying “HI” to Ryan and for him to give you the biggest smile back.

That is Ryan’s way of letting you know he is pleased to see you.

Ryan has the cheekiest personality. After he has an appointment with one of his therapists, he smiles and laughs when they get their stuff together and that is his way of letting them know he is happy to see them leave.

When Ryan is not feeling right or well in himself his body tone goes high and rigid and he begins to get frustrated that indicates that he is upset or uncomfortable.

This sometimes can be frustrating as a parent as he doesn’t have the ability like a child who can speak to tell what is exactly wrong. This means we go through the process of making sure he is clean and dry, repositioning him or changing whatever activity he is doing at the time.

We don’t always get what he needs correct straight away but throughout the years we learn with experience.

At times it has been hard and I had felt as though I had lost faith when I found out that Ryan wouldn’t be able to speak or communicate with us.

But now, seeing how far my little boy has come along and how he tries to let us know how he feels and what he wants through other means of communication, I am proud of the little fighter he has become.

Experiencing Epilepsy for the First Time

Two years ago, epilepsy was just a word to me.

I was aware of what the condition was, but until I experienced it first hand, I did not know the effects it can cause on the individual who lives with the condition and the family members who are there to witness it happen.

The 27th September 2016 was the day I watched my precious baby boy experience a fit for the first time.

That day will live with me forever, the day I experienced a seizure for the very first time. As November is epilepsy awareness month, I thought that it was only appropriate to share Ryan’s story with you all:

I woke up around 8am on that Tuesday morning, to Ryan making the strangest noises. When I went over to check on him in his crib his left eye was frantically twitching and he was struggling to breathe due to little bubbles of foaming saliva coming from his mouth.

I screamed for his dad, Christopher, to wake up, he ran over to Ryan’s crib and lifted him up – trying to make him more comfortable whilst I called for an ambulance.

A first response car arrived at our house, it was probably only minutes, but it felt like hours.

The paramedic confirmed that Ryan was experiencing a fit, he advised that he was struggling to come out of it on his own.

He gave Ryan medication, but the fit got worse, by this point my baby’s full body was shaking. He radioed over for an ambulance and Ryan was rushed to the nearest hospital by blue light, an army of doctors waiting for him.

They cut his baby grow off, and inserted drips for medication into his arms.

They fought really hard to stabilize him and bring him round from his fit.

It was Ryan’s first ever fit that day, a date that will stay with me forever. Over an hour it lasted the doctors advised – but to us it felt like a lifetime.

When Ryan was finally stabilized the doctors arranged for Ryan to be transferred to a children’s hospital. Ryan’s body was exhausted from the lengthy fit and heavy-duty medication, that he slept for 25 hours.

We spent two days in hospital with Ryan, before being sent home with rescue medication incase this reoccured.

December 1st 2016, just over one month from Ryan’s first seizure, he experienced another. This time the seizure only lasted 17 minutes with the help of rescue medication.

He was checked over at hospital, before they confirmed that Ryan has epliepsy. From this day onwards, Ryan has taken anti-seizure medication.

What does it feel like to be a parent of a child that has epilepsy?

This is a question I hear often. My answer to this is summed up in one word “Terrifying”.

Each fit for me is just as hard to watch as the previous. His fits are so unpredictable that we have to ensure that his rescue medication goes everywhere with him.

It doesn’t matter if it is a simple trip to the shops or a day out, we always have to carry it. We also have to ensure that anyone that is watching or caring for Ryan at any time is made fully aware of his condition, and how to counter it.

We also have to ensure that we keep on top of correct dosage for the medication, to suit his current weight.

Final Thought……….

Being a mum to a child with cerebral palsy I have seen and experienced a lot of unpleasant things happen to my son, feeling helpless each time.

However for me, watching him fit, helplessly and his body be so out of control, is the worst thing I have ever witnessed.

Ryan amazes me every time with how quick he is to recover with a smile on his face.