Heather and Joe’s story

Hi there everyone, I hope you are all keeping well.

Our story is one that will be familiar to most of you, in part anyway.

During lockdown my physical activity had declined to the point where I was hardly leaving the house at all.  I still work full time from home and the prospect of the summer holidays looming filled me with dread, I’m sure many of you can relate to that!

My son Joe has long had problems with concentration and behaviour and the time when we were home schooling was a monumental challenge.  Unfortunately, although we knew Joe had issues, we didn’t have a diagnosis and Joe was on the waiting list for a neuro developmental assessment for three years.

A couple of months ago two things happened which would change what seemed to be a path with no light at the end of the tunnel – Joe finally got his assessment and I heard about the HSP 1000 mile challenge.

Joe has now been given a diagnosis of Autism Spectrum Disorder and is still awaiting one for ADHD.  The process took so long that the information we had provided at the start was no longer valid, so we had to fill out more questionnaires. 

For those of you who, like myself, know little of the condition ASD, it basically means that people with the condition have brains that work in a different way to ‘normal people’.  They often struggle with social situations and can get very frustrated and angry as they struggle to communicate how they feel or what they want.  They often find busy/noisy places stressful and are often under or over stimulated when it comes to their senses.

When Joe’s stress levels are high he can go into ‘meltdown’ which means his brain goes into survival mode.  This can be a very dangerous time as he has been known to run away and get lost. When he is in this state his brain has basically shut down so he cannot process any communication coming from others.

As I’m sure you can imagine this would be a difficult time for any parent, let alone one with HSP.

I know this all sounds like doom and gloom, but bear with me!

One thing about Joe is that he would sit in front of a computer game all day if you let him, it’s his thing.  I really didn’t want him to spend the majority of his time during the summer holidays in front of a screen so I was trying to think of something to do with him when I heard about the challenge.

‘Here is my reason to get up off my bum’ I thought.  The first big walk we went on was down the beach.  We walked from Irvine to Barassie – just under 5 miles – and it was brilliant for Joe!  It was quiet and he had so much space to run around in.  Because I’m so slow at walking it meant I could just keep going at my own pace and he could just run around, with his Dad keeping an eye on him, just in case.

I was in quite a bit of pain by the time I got to the end but man I felt good for doing it!

We have since done that walk another two times and I hope to get in another one before the end of the challenge.

I suppose the point of our story is that you can be in a really bad place, with no end in sight and something comes along and gives you a way out.

Now we have a diagnosis for Joe we can move on and (hopefully) get him the help that he needs. I am much more active, walking more and getting on the exercise bike in the evenings and, although difficult at times, I feel better for doing it.

I think I had better get some waterproofs for Joe and me because I plan to keep up the beach walks right through the year.