Actress, Auditions and Autism

I know it's been a while but here's some news about how life is living with this thing called autism. Joely, my nearly 14 year old son with severe autism is now taller than me.  This is quite alarming as he's also stronger than me and so it's harder for me to get him to do things as he will now choose to do his own thing and like any teenager he's got attitude and realised he can choose to do his own thing instead of doing what 'mummy' chooses for him.  For a non verbal child with autism this is difficult as his voice is breaking and his hormones have well and truly kicked in.  He's still my little boy at heart and so I stand my ground when he's insisting on having chocolate instead of spaghetti and continue to bribe him (with promise of chocolate or polos if he eats his meal first).

An example of the hormones kicking in was this weekend when I had friends staying and they have a beautiful twelve year old.  I have never seen Joely look at a girl this way.  Unlike what I imagine a 'neurotypical' thirteen year old to choose to be cool and ignore this girl Joel took a long hard look at her, moved closer to her face and could not keep his eyes off her and giving her a smile and a grunt.  This led to the girl blushing profusely and being totally embarrassed as Joel had not kept it a secret that he liked her but in his true autistic fashion he then proceeded to walk off to the trampoline with his iPad in hand totally unaffected by this encounter.

My friend who is the mother of this twelve year old girl said that as he's so good looking her daughter  was affected by this meeting and she said she would be proud for her daughter to be with Joel in the future.  I said her daughter would need to work full time and my husband said her daughter would have to have strong shoulders to give him a 'piggy back' which Joel so often asks for.  Joely still goes on my husband's shoulders at any given opportunity like when they go swimming together and Joel insists Jake jumps in with Joel towering above him.  I did remind Jake over the weekend when this happened that Joel is nearly fourteen and this can't happen for much longer!  Joel is unaware that he can't do this anymore as getting on dad's shoulders has been a given since he was old enough to sit up.  Dad will continue to lift Joel on his shoulders until he can no longer physically do this.

Jake and Joel on a recent outing 

Joel still has sleep issues and doesn't sleep at least one night when he's home with us.  The melatonin he takes doesn't work with us so this comes with its challenges like lots of parents who have children with autism.  

I have also been busy with my seven year old son who has a speech disorder and social and communication difficulties and fighting for his right to go to a school which will help with these issues.  I have fought for my little boy like we have done for Joely.   This has been all consuming and in the mean time I'm auditioning for parts in the world of acting.  It's not for the faint hearted and if you want someone to give you a pat on the back and tell you you're wonderful it's certainly not in the acting world.  It comes with a lot of rejection and being pushed back so to keep a healthy self esteem it's probably not the best choice of career.  Today I had an audition and I had to watch a keep fit video and copy the actions like I was copying Jane Fonda and had to look like I was pleased with this.  I had heels on so ended up in my socks nearly falling over on the slippery wooden floor...and off I went  into the world again as if that was the most normal thing in the world.  But I chose to take a year out last year to get a Masters degree in Acting because having a child with autism has made me realise life is too short and that I needed to do something I had put on hold for so many years.  Acting is living the dream and I love it.

I guess having these challenges have made me stronger and I have had to keep my sense of humour with it.  I can't worry about the small things as fighting for the educational rights of my boys has made me realise this. 

Max riding this weekend on Jack

I can't look too far ahead with regards to where Joel will be when he's 19 as I get asked this and I have to say I can only look at the next year.  Do me a favour and don't ask that to parents with severely autistic children.  I've said this before but it still stands.  They will doubtless not have a clue. I wish there was a magic wand to wave at Joel but there isn't.  Joel saw a psychologist on Harley St a few years ago and they chargged £800 for the first visit.  They were the best in the field but still, it's hard to justify this cost isn't it?   We want to go back to him as Joel doesn't have anyone from this field on the NHS and there's a long waiting list.  Joel is growing into a gorgeous boy and has made so much progress in so many areas like going riding on the weekend.  He's so much calmer.  Two years ago he would have been very verbal and would have been very impatient if a horse wasn't ready straight away.  This weekend he rocked up very calmly and even brushed a horse before riding him.  He waited patiently for his siblings too as they were riding with him and took longer to get ready.  It's small steps like this which help him and he sings all the way back to his respite home when he's been riding.  The tiny things that parents take for granted like this are massive for parents of a child with severe autism.  I've learnt to be grateful for these small blessings.

Joel and Holly brushing Joel's horse before his ride