Special needs parenting and the need for respite

By Kelly Wilton

Asking for respite can be a difficult thing when you have a child with a disability. You are forced to recognise that despite others saying “how do you cope with it all, I could never do that”, your situation has in fact beat you (albeit only temporarily).

When you tell people you’re ok, only a few people will actually see the truth behind your exhausted smile and tired eyes and gently recommend a break, a different way of doing things, or if that fails, a bottle of wine to share with a caring friend who has their listening ears switched to ON!

Lack of check-ins from friends whether by email, phone, text, in person, Whatsapp or whatever else we use these days to stay in touch, just reinforces that people are busy with their own lives and that we all have our own issues to deal with.

As well as trying to shed some light on our situation to enlighten others, and to reach out to others in similar circumstances, I am also a huge advocate on mental health issues – a cause very close to my heart.

Support & respite in some form is essential if you want to have some sort of life that resembles living, rather than just surviving and getting through the days. Even the regular day to day stuff can wear you down; for example take our current situation of trying to get a bike for our son Mikey D.

We have waited years to be able to purchase a bike that meets his additional physical needs. He is physically strong despite his hemiplegia, however the epilepsy and the permanent damage it has caused to his developing brain means that it can take a long time for him to process certain things.

Like safety awareness.  

We need a bike with a parent handle to have some control – without it, Danger would take off in a heart beat onto a street, because that is just what he wants to do. He doesn’t do it to be defiant, he does it because he wants to go fast. He doesn’t have the ability to process the possible consequences of his behaviour.

We live with this day in day out. It’s thrilling as we never know what the day will bring and he’s always up for an adventure, but the flip side? At 40 years of age, I am in constant fight or flight mode, trying to be two steps ahead. As a side note – 40 is not the new 20, that’s a lie!

Life isn’t supposed to be constant fight/flight. When you are in this state for too long, over time you become mentally and physically fatigued. It’s not a question of just ‘go for a run &  you’ll feel better’ – you just don’t have any reserves left. 

The long term reality for us is that we have to find a way to deal with the constant pressure we are under as our son navigates the world around him. It does not mean that as time goes on things cannot improve. In fact, I am sure they will. The limitations he has because of his severe brain damage sustained at an early age will be replaced with new ways of doing things and hopefully less worry and fight or flight mode for us! In the meantime, to alleviate the stress of the day to day we get out there in the world when we can as a family, even if it means we don’t last as long  – we don’t do ‘days at a time’, we do hours, sometimes minutes. This is our respite, this is what we do.

The world around can help ease the pressure we’re often under day to day in so many ways – an ongoing form of respite if you like. For society to appreciate families like ours and from companies and organisers of events – this is what we need:

• Understand we are not your typical family.  We don’t do days at a time, we do hours at a time, sometimes minutes.
• We need safe places for when meltdowns occur, we need ‘break out’ areas for our sensory seeking kiddies and their parents.
• We need offers of genuine help, not pitiful glances.  For example – “can I carry your bags while you see to your child?”. A simple gesture like that would be so welcome.
• And remember, we are trying our best, like you, to have an enjoyable time out. It is not cool when a day out ends in us feeling like we have become just another ‘attraction’ for others to comment on or put their unsolicited 2 cents worth in.

Let’s all try to remember that there is generally a reason behind everything we see. The easiest way to provide respite and to try to understand another in a situation different to ours, is to listen.

And maybe, just simply be kind.

Follow more of Kelly & Mikey Danger’s journey at Dancing with Danger.   Their patient page for HHE families can be found at: www.rareconnect.org/en