Parents of autistic kids: things u regret most & you would advise otherwise

[Soumia]

Dear mums or brave mums

It is a tough job to be a mother for an autistic kid...especially if you have more than.1 child on the spectrum; I have 2 who keeps me 24hrs/7 busyyy and I love them

In this thread.lets share our experience of the mistakes we did and we would advise other novice parents to avoid.

My kids are quite young; aged 4 and 5 and were diagnosed just last year.

My mistakes are:

I didnt take much videos of them when they were very little...so I could track back their behaviour/progress.

I have always been doing all the hard work with them and still...i think I should accept helpers...the more they are used to me as their 24hrs/7 carer the tougher is both for me and them. Recently i involved fxmily members :)

I never took any break since their diagnosis...again it helps to have a second carer...your sister...relative...a close friend ..etc to create a balance.
I have resprted to the option and it helped a lot :)

Networking and joining parents groups and not just listening to the so called "professionals"...
Parents are sometimes more experienced and can provide excellent advice...

I'm not saying to be scared of social services. I'm not even saying that they shouldn't be trusted. I am merely saying that if you appear to professional, too confident, then they don't probe any further and presume that you need no assistance what-so-ever.

I wish I'd not spent a few years trying to make ds look / act 'normal' (pre diagnosis). I wish I'd not pushed him into social encounters / sports classes / events etc which invariably would end in tears or a meltdown and everyone staring and me trying to find a reason as to why he was so different (I was totally clueless at the time)

I also wish I'd not persevered with mainstream school for so long. I listened to all the teachers and some professionals who told me that special schools were no place for a profoundly gifted child, autistic or not. I let him struggle and be excluded and feel like a freak and I should have stopped it so much sooner. I wanted him to be like everyone else I think. He's now in a specialist autistic school, happy, thriving, making friends, feeling accepted and getting lots of therapy and input to support him and I think he'll do so much better as an adult because of it. He's also getting work much more differentiated for him than he ever did in mainstream!

I also wish I'd never tried to get to know any mums at mainstream because as soon as the wheels fell off, they ran a mile and it was like the parting of the red seas when I turned up on the playground. I wish I'd made friends with other parents of SN kids.

Sometimes, I secretly feel like I should never have had ds. Not because I don't love him and he lights up my life but because I feel guilty because it's my fault he has to suffer in life.

Not listening to my son about how much he hated school.
Trusting the school were doing there best and taking a while to put me in the driving seat and direct /advocate for him.

Definitely spend as much time as you can with other parents of children with SN. I was at a watersports group in the summer and my 11 year old lost it completely because his paddle was the wrong colour. Everyone understood, it was amazing. I often find it quite refreshing to talk to other parents about the reality of parenting children with SN 24/7. I find professionals can be a bit too positive sometimes and there are times when I just want to hear someone say that they get that it's hard.

Don't compare your child, although at times it really hurts your heart when your child is left behind.
DS sensory issues stop us doing normal activities.
DS had a meltdown at my niece's birthday a child took a jelly from the jellies he'd lined up. A few friends were there with their DC one of my oldest friends didn't invite DS to her DDs party last month.
It was the first public meltdown they witnessed, it was a mild one IMO