Minnie’s Musings

My youngest has just had a conversation with a recruitment consultant which segwayed into a discussion about his son’s recent diagnosis of autism, at the age of five.

He is bewildered and frightened, concerned for his wife and other sons. He is feeling isolated.

Goodness me, it brings back memories and the tears well up almost as a reflex. Does it matter that it was over 25 years ago for us? I think not

I would proffer the following :

Treat what you are feeling as grief. For that is what it is. Your life as you thought it would be has evaporated.

You will now live parallel lives; one with your ‘normal children, one with your disabled child. Occasionally they over lap, much of the time they don’t.

Make a decision not to set yourself against it. Autism is a powerful condition., particularly the further down the spectrum it is. You will develop workarounds, but they can be slow to materialise.

With your spouse, work as a team and try not to set each other up to fail. Be honest when you can’t cope and articulate your frustrations. Say sorry.

Talk to your children and explain what is happening. Children can cope with complex issues and have significant levels of understanding. Then sit back and admire how they adjust.

Educate your extended family and ask for help when you need it. But brace yourself for some negativity. Give them time and opportunity to adjust.

Practical suggestions:

Access local support (groups, courses, clubs) where you and your child are safe. One which has a “never apologise “rule is the best.

Inform your other children’s schools and investigate Young Carers.Talk about what is happening with their friends parents.

Apply for applicable benefits and get used to the form filling (describe your worst 24 hours, have a box of tissues to hand).

Get yourself on a behaviour management course if necessary. There are de-escalation and restraint techniques that are really useful.

What you will learn:

You have reserves of emotional and physical energy, you didn’t think you had.

Your other children bring a whole new dimension to “the sibling rule” (I can grumble, but don’t say a word about my brother) and is awe inspiring.

Yes, you learn who your friends are, but the ones who stick around are the best and you make new friends. good friends who listen, understand and prefer advice.

You will learn the meaning of fight or flight, and find yourself resorting to fight more often than not.

Those who shout the loudest and make a pest of themselves are more likely to get what is needed for their child.

It’s a long, hard, painful journey. But I can tell you now, the unit your family becomes is compassionate, giving and loyal. And your heart will burst with pride when someone points this out.