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.