The Angel of the North

From having never seen the Angel of the North in person yesterday I found myself hurtling past her for the sixth time in 10 days.

I am the first to admit I am not the best driver in the world and my Fiat Panda bares the scars to prove it!

I am not a fan of motorway driving and avoid it wherever possible, to be fair I am also not so hot when it comes to city traffic. I never know which lane I need to be in at roundabouts.

So the idea of driving from the lakes to the North East was not something that was on my list of ‘things to do’ although I had toyed with the idea of visiting Hadrian’s wall with Evan many times.

Angel of the North

Then all that changed.

Evan entered a swimming competition that was being held in Sunderland.

A huge deal for us as it was to involve 2 nights away from home and swimming in a 50 meter pool. This was by far the biggest challenge on a personal level we had encountered for a long time. Doing anything away from home with Evan is a logistical nightmare.

He struggles with the invisible. All the things most of us have never thought about, never needed to consider.

As a parent, food, for me is perhaps the worst, especially now he is swimming as its imperative I get him to eat. Evan has always struggled to eat in different places and has a ridiculously limited diet for which 85% sensory issues are to blame and 15% his need for sameness and routine.

We always stay in a Premier Inn when we go away as they are identical and he knows what to expect. Evan can tell you, much to his delight, even the corridors smell the same!

Planning and preparation are our secret weapon against autism. The difference between coping and enjoying.

So last week I drove the 220 mile round trip to Sunderland Aquatic centre so Evan could spend half an hour getting acclimatised to the smells and acoustics in preparation for his upcoming competition.

Two days later we were on the same road. This time heading to Newcastle’s Royal Victoria Hospital.

Evan has very sadly started to have what are believed to be nocturnal seizures (epilepsy)

It started about 4 months ago. I desperately hoped that it would simply go away and I can now vouch for the fact that crossing my fingers and using the power of positive thought didn’t work.

Nocturnal epilepsy is not something I had ever heard of.

Evan had to have an EEG to look at his brainwaves. He coped very well and although he found the entire process very intrusive he did everything that was asked of him. We are now waiting to see a neurologist and he needs to go back to Newcastle for a sleep deprived EEG in the next couple of weeks, possibly followed by a stay in hospital.

The good news is that Evan is oblivious to his night time activities other than aching after a big fit.

I, on the other hand initially felt absolutely devastated.

We work so hard each and everyday just to keep our heads above water and cope with daily life, it seemed very unfair.

Evan has always had sleep problems and often only gets for 4/5 hours per night.

When he started having fits I was so frightened I hardly slept at all. His pediatrician asked me to keep a diary over the period of a month of any activity and if possible video him during an episode.

I spent many nights sat staring at him, poised camera in hand.

As a single parent with no one to step into the breach I was absolutely exhausted although I did manage to get video footage!

photo 1

Just three days later we were back on the same road this time heading towards Sunderland for the swimming competition.

We settled in to our room and then went in search of  McDonald’s. I found one close enough to the aquatic centre for Evans lunch over the next two days and one just 5 minuets drive from the Premier Inn for the evenings. The relief was huge.

He coped brilliantly with the weekend and swam his heart out.

His hard work and training paid off and he came away with 5 medals.

When he swims Evan is free from autism.

Life seems to throw rocks in his path but we wont be beaten. I will just continue to run ahead of him and use the rocks to make cairns (piles of stones) to guide him on his journey.

0O7A0575 (2)




























photo 1









This entry was posted in News. Bookmark the permalink.

Leave a Reply

Your email address will not be published. Required fields are marked *


You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>