Asking for respite. It’s a funny thing when your respite circumstances are those concerning a child with a disability. You are forced to recognise that despite others telling you “how do you cope with it all, I could never do that”, that in fact it has beat you. Only a few people will actually see the truth behind your exhausted smile and tired eyes and gently recommend an alternative or a different type of structure, and if that fails, a bottle of wine to share with a friend who has a genuine concern with ears switched to ON!
Lack of check-ins whether be by email, phone, text, in person, snap chat or whatever else we have to make our lives so much simpler, just reinstates that people are busy with their own issues and we simply all have something to worry about and our own issues going on.
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.
One or two people cannot manage it alone if they want to have some sort of life that resembles living, rather than just surviving and getting through the days.
Take our current situation of trying to get a bike for Mikey D. We have waited absolutely years to be able to purchase a satisfactory bike for his additional physical needs impaired from his Cerebral Palsy. 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. We need a bike with a parent handle to have some control – 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 is a thrill 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 2 steps ahead. It doesn’t always work because life isn’t supposed to be constant fight/flight. And a side note – 40 is not the new 20, that’s a lie!
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 don’t have any reserves left when your top priority is your child with special needs/additional needs/disability – whatever, all the words mean the same.
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 with less boundaries than other children of his age, due to his limitations – and yes they are limitations – because he has had severe brain damage at an early age.
It does not mean that as time goes on things cannot improve. In fact, I am sure they will. The limitations he has will be replaced with new ways of doing things. I am a keen advocate for inclusion and I practice what I preach. We get out there, 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 what we do.
For society to appreciate families like ours and for 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?
- And remember, we are trying our best, like you, to have an enjoyable time out. It is not cool when it ends in us feeling like we have become just another ‘attraction’ for others to comment on or put their unsolicited 2 cents worth in.
Listening to one of my favourite radio shows the other day, I heard another example of the lack of knowledge that the general public have with disability and particularly disability concerning children. Maybe it is easier (or not) for society to understand the ageing process and disability that can be a consequence of that due to age and/or poor health. My dear dad was verbally abused by a fellow human in a shop for being on the booze at 10am in the morning. My dad had a brain tumour and had trouble walking. Nice humanitarian style from his fellow human, pffffttt!
On the flip side, assuming that children like Mikey D are lazy is not cool when he’s in his oversized special needs stroller – it is weighted to carry up to 70kg, it is $700 – it is funded for special needs families, before they go down the path of purchasing a wheelchair. Please try and remember there is generally a reason behind everything you see. The simplest of all actions for us to even try and understand another in a situation different to ours, is to listen.
And maybe, just simply be kind.