Autism, Adolescence and Braces

After the Summer holidays it's usual for people to ask if you've had a good Summer and for a parent with a child with severe autism this is like asking them how did their endurance test go?  Summer is when parents and carers really have to have their wits about them.  Rather than sitting back for the holidays this is when they have to sit up and spend most of their time being hyper vigilant and super fit!

Lucinda Marsden Borer's blog for Mencap writes about being a parent with a teenager with autism during the holidays and is a realistic view of what it's like being with a child with autism for the holidays.  I love reading her blog because I can relate to this as a parent with a teenager with autism.  She doesn't shy away from the harsh reality autism and the effects it has on the whole family.

https://www.mencap.org.uk/blog/summer-holiday-not-us?utm_source=Adestra&utm_medium=email&utm_campaign=FamilyHub+-+summer+holiday+-+2+August+2017

Joel had a brilliant week with Woodlarks The Mighty Adventurers Summer camp at the beginning of the holidays and this is something he does every year.  The volunteers on this camp deserve recognition they are the true Warriors.  It gave us a break to be with Holly and Max and we took them to Devon for a lovely week away.

We had Joel with us in Cornwall for three weeks and we wouldn't have had it any other way but he doesn't sleep much so it's usually an endurance test for all involved.  Joel swims in the sea every day come rain or shine and loves the sensation of the waves crashing down on him.  It's one of the only things I can truly enjoy with him when we are both in the sea at one with Mother Nature and in her command.  It's as if for a moment in time he looks like a totally 'normal' teenager in the sea and I don't have to do any explaining or have any odd looks I am free with him and I wish we could be in this state without a care in the world with him all the time.  

Joel bungy jumping on holiday in Cornwall

Joel in a river with Max and Jake

But this isn't reality.  Reality is we get out of the sea and he gets undressed and if we don't keep a close eye he runs across the beach stark naked in view of all the other surprised beach dwellers!  This was fine when he was pre-adolescent but it's a different story now and my twelve year old daughter is mortified and I think at this point surreptitiously moves away pretending to be with another family.  It's great not to have these inhibitions in many ways but now Joel's fourteen this is worrying as it's not acceptable in society to be a streaker.  I was trying to teach him that he has to have the towel around him when he gets changed now and he was pretty good at accepting this but he would not instigate this himself.  Joel needs pretty much everything done for him and needs prompting and help to get dressed, do his teeth and all the other self care things we usually take our teenage kid for granted doing.   Without Joana my lovely Portuguese au pair who helped us and who has come back every Summer for four years it would have been very difficult to have Joel in Cornwall for this long.  One family I know who have a nineteen year old with autism is in full time residential care and comes to Cornwall for a few days at a time.  This has made me think about Joel's future and whether he will need similar support when he's older.  

Joel having a stroll at Port Isaac

One thing I was really happy about was his trip to the dentist at the end of Summer.  The dentist praised us for him having really good healthy teeth.  So far so good and he's had no fillings or any teeth removed in his fourteen years.  The dentist did not bring up the fact he has wonky teeth and I told her my daughter said if she had teeth like Joels she would have braces.  So I asked the dentist about Joel having braces.  She took a deep breath and was alarmed at the question as I don't think it's a common one for parents in my situation.  She explained he would need to have anaesthetic each time the braces are put on and tightened and tried to put me off but agreed for Joel to see an orthodontist who could maybe find a middle ground and if not braces maybe take a few teeth out to make room for overcrowding which seems to be happening.  I was glad I managed to get this appointment otherwise we would have dutifully left the dentist without discussing this.  My reasoning was I want Joel to have a lovely smile like any parent would want for their child.  These desires don't change for parents with children with severe autism.  Or maybe I should speak for myself but why should Joel not have the same treatments 'neurotypical' children have?  I know I am over optimistic sometimes about my expectations for Joel but I have to have goals for him otherwise what's the point?  

Joel and Joana

Joel joined his drama group the Othellos again this term on a Saturday for kids with disabilities and I have to say even though it's for an hour it's a Godsend.  Off Joel goes and dances and sings and Matt and the rest of the Othellos buddies get to work.  Without these groups parents are left to feel isolated.

I had a meeting with Joel's school this September and I have requested that they focus on his writing and reading as this has been overlooked for other things like putting pillow cases on and hanging washing out which is all very well but I said time was ticking away at school and that I wanted a big push with this.  Again I have expectations about his learning ability.  I know he's a very complex child but I know he's bright and so do his Grandparents who have these same wishes.  It's hard to explain to them year after year that he hasn't really moved forwards in this area.

Have you read 'The Reason I Jump?' by a teenage Japanese autistic boy?  He explains it very well what it's like to have autism and he's incredibly sensitive, compassionate and loving and cares deeply about what others think of him even though he doesn't appear to care from his body language as he's non verbal.    But he's learnt how to type his feelings down and he's able to express himself.  I  know deep down that Joel is like him but it's finding a way to unlock this which is the million dollar question.

Here's to another new school year, another Summer over and we're all still here!   Good luck this year for all kids with learning disabilities and difficulties and good luck to all the parents who advocate for them every single day.

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