Looking after your own additional needs, when you have children with additional needs.

Something I learnt several years ago.

“It’s ok to do something for myself”

Looking after yourself when you have children can be hard, finding time for yourself when you have additional needs and children with additional needs- can be nigh impossible!!

Getting the right balance between myself, my needs, children’s needs, and Family is always an uphill struggle.

We use daily, weekly and monthly visual planners. I need to plan in advance in order to ensure I make time for me to avoid burnout. Yes there are times I get it wrong, but don’t think I’m not trying or haven’t noticed.

Just because I’ve not spoken or seen you for a while doesn’t mean I’ve forgotten you, it’s more likely I’m ill or in burnout.

It’s hard explaining that although I’m “only” deaf in one ear, busy/ noisy environments are still very hard to hear in, often not being able to sense the direction of the voice, leaving a feeling of playing pingpong. Add in pain, sparks and numbness of neuralgia and joint pains and often just getting out of bed is difficult. Sitting in a hospital because of ear pain, that’s actually nerve pain is a big deal, it wipes you out! Add in sensory overload to hospitals, and autistic burnout comes quicker. Watching puzzled faces of “why are they sitting in the foyer, or outside if they don’t smoke!”

It’s never as easy as just getting on with it. Amongst the most hurtful comments are:

“She sounds drunk!”– no. It’s neuralgia numbness affecting my mouth.

“They’re always talking” or “they never talk” no. They’re likely trying to follow conversations and judge when to talk, or perhaps just stop!

“They’re always hurting themselves“- perhaps they have a condition that affects joints, skin etc.

“They’re always cancelling” – there’s always a reason, at times they may not want/ be able to share.

“Describe what it’s like to be autistic!” – just reflect back “What’s is it like being neurotic-typical?!” (Watch the puzzlement).

“You don’t look disabled!” – So many hear this, hidden disabilities are very, very real.

If everyone focussed on acceptance, not ignorance, perhaps there’d be less judgement.

Look at CLANGERS

Next week is Autism Awareness Week, wouldn’t acceptance of all neurodivergece be better.