Having a teenager with severe autism

I had dreams that Joel would be head boy of a school for some reason when I gazily or hazily (from lack of sleep) looked at him as a baby once when he was finally peaceful; which was a rare occurrence when he was one.

Now I have dreams he will be able to cross the road safely, be looked after well by his respite home carers, not run off in the supermarket to decimate the Thomas the Tank Engine magazines for the toys, tell me he loves me without me prompting him, being able to use a knife and fork properly and other self help skills.

Joel is now 13.  He turned 13 on 23rd July.  I got so excited about his birthday I got a cake made two weeks before when his Grandmother visited us from Cornwall.  I then made a cake for his actual birthday which I don't recall him eating.  I didn't mind though he's got an amazing knack to get away things like walking off half way through opening a birthday present.  Because he can't be bothered with it.  I am so used to this now I don't mind as he's the most amiable boy in the world.  He never complains about anything, never demands the latest Xbox game, never actually demands anything other than his ipad, tickles, back (which means piggy back from anyone who will give him one), trampoline, swing and cake or cereal which is a constant.

He's still got a gluten dairy free diet due to his digestive system and intolerance to these things.  He eats well actually and I am benefiting from this diet too though gluten is so hard to keep out of everything and just this Sunday we went for a pub lunch and he had about three 'doughnuts' as he called them.  They were actually yorkshire puddings and he had an adult meal!  I am now ordering him adult meals!  Crikey and his shoe size has hit the roof he's size 10 nearly.  How on earth did that happen?  Joel still has outbursts of crying and this pains me to see as I still don't know why he cries.  Well apart from his autism which must send him round the bend.  Not being able to tell me how he feels or anyone else locked in his own head must make him sad.  But he is generally a happy boy and loves his siblings Max and Holly.

Joel with his respite group on a trip to a castle in East Sussex

He has regular cranial osteopathy and the paediatrician I saw with him yesterday said he'd made huge improvements in six months as Joel was very compliant and let the doctor check his ears without any fuss.  This is normally a nightmare for a doctor, mother and child with severe autism.  Perhaps Joel is showing signs of maturity.  Him and his younger brother Max like to get up to mischief all the time and Joel will do something which makes Max laugh and then they will both get involved.  It usually involves trashing something but at least they have a good bond!  We have so much to be grateful for with his respite house who he stays with five nights a week.  He has been to Dorset last week and went to Corfe Castle, Marwell zoo and enjoyed the Purbeck coast.  This gave the family a break as we took him to Cornwall for our annual Summer holiday and he loves being there swimming in the sea every day and staying with his beloved Grandparents.  Our lovely Portuguese au pair Joana came back for the third year in a row.  We love her and she's part of the family now!

Joana and Joely on holiday in Cornwall 2016

Everyone who meets Joely is somehow touched by him.  He has something magical about him.  He's an enigma to me but I know he understands every word I tell him and he's definitely responding more to me.  He even told his dad to 'shut  up' the other day.  (said like this 'shuuuuttt aaaaahhhhhp' ) So perhaps the teenage hormones are really kicking in.  There are no text books for this sort of thing.  So will keep doing the next right thing....whatever that is...x

Max and Joel Cornwall 2016

Life over the last few years

Joely in the Isle of Wight 2015

I've been meaning to update you on living with one of the most incredible boys on the planet called Joel or Joely as I call him.  I haven't been in touch for a while but I wanted to give an annual report on life and so here it is.  Joely is home for three days a week and at his wonderful respite home for the rest of the week.  I decided I would need this when I started my Masters in Acting in September 2015.   I had put my life on hold on and off for the last twelve years - having stints working in Events in Sydney and back in advertising for a bit in TV for a few contracts and some presenting work.  Also did a foundation course in acting last year and went for the MA audition and haven't looked back since I started the Masters course September 2015.

If living with autism has given me anything it's given me a drive to live life to the full.   I spent so long in the autism bubble thinking I'd never get out of it that I realised I had a choice to let go of certain things because if I didn't it was going to finish me.  I was done with being in the autism bubble,  Done with endless doctors appointments, done with any appointments to do with it.  Because after so many in the last 12 years I just decided for one year of my life I was going to put my hands up and say no.  I.  Can't.  Do.  This.  Any.  More.  I needed to pursue something I've put on hold for too long.  My acting.  And I'm doing it.

I have learnt how to fight for someone's life on a daily basis; being inundated with letters, phone calls, meetings, and people.   If it has taught me anything it's taught me about people. I have had many enter my life because of Joel.  I have also come across the human race in general because having Joely in my life means that we attract a lot of attention if I go out with him -  not always for the best reasons; Joel nicking chips from someone's plate in a restaurant, Joel crying in a public place and banging his head,  Joel being the only one to blurt out something inappropriate in 'Joseph the musical in a crucial silent bit - but the whole audience laughed!  What does that tell you about humanity?  Most of the time people are wonderful responding to Joely's disability.   When going out on a walk with Joel he loves getting muddy and will manage to get mud plastered all over him.  But Jake and I don't care about what he looks like to others as I know we do get stared at but if Joely is happy it doesn't really matter.  In these situations over the years bringing up Joel I would want to melt into the floor.  I hate attracting attention.  But over the last year I have learnt to not care so much about what people think of Joel.  It's their problem if they have an issue with him.  I guess I spent so many years apologising for him that I no longer want to do this unless really necessary (ie pinching someone's chips).

I have met some incredible people who care for Joel and who volunteer for disabled kids.  It's blown me away at times; just today I took Joel along to a drama group for kids with special needs called the Othellos.  Joely really didn't follow very much but had a buddy called Hannah who tried to help him do some of the games and moves.  The group started off in a circle being asked what they did over the last week.  When it got to Joel I had to speak for him and said he'd made pizza on an outing to a restaurant with his school this week.  When Matt the lovely teacher asked him what he was doing later tonight I didn't think he'd be able to say anything and he said 'chips' and I repeated 'chips' and that he has fish and chips on a Saturday night so he's looking forward to them.  The group laughed and I was heartened at the end of the session when Matt said he thought it would benefit Joel to come along again.  Just when I thought we were going to get kicked out.  Joel was much lower functioning than the children there but this kind man said he thought Joel was a lovely boy and that it would benefit him coming.  Sometimes I don't know how to thank people for being kind as I think I'll start crying but usually I don't have time for that as Joely's one step ahead of me and usually trying to put his hand in a fire extinguisher or an alarm or something he shouldn't be touching.

Back to what this living with autism malarchy has taught me. It's taught me that I am the only one who can make changes not only in Joel's life but in my own.  No-one was going to tell me to get a life.  Why would they?  As a carer to a disabled child that role seems to stick and then the well intentioned sympathy of others really kicks in.  For example I have been told over the years 'I couldn't do it', 'what bad luck', 'I couldn't do what you're doing I thought having x was hard but not now I see you', etc etc.  This sort of 'poor you' talk by the way is the most annoying thing you can tell a mother or father of a child with severe autism.  So can I give you a helpful tip?  Just don't say it.  Don't tell me you went out with a man who had two autistic children and that you went on a caravan holiday with them one weekend and after that weekend decided to dump said man as you really couldn't cope with these children 'so I know how you feel'.  Please don't tell me that. Please don't use me to prop yourself up.  Because I really don't need sympathy. Please just say something positive or don't bother saying anything at all.   I have a wonderful boy who is extraordinary at giving me joy and pain in one go.  What I mean is that when he gives me joy I can tell you it's the most unique and fulfilling kind of joy that a mother can have and when I feel his pain it is probably the most extreme a mother can have.  But I guess it's taught me not to sweat the small stuff.

I really don't want to say I'm a hero autism mother because I'm not.  I have Joel's respite home and the caring people there to thank, the amazing School Step by Step and the support of my husband. The unsung hero in this case is Jake who is the most amazing father anyone could wish for let alone a father of a child with severe autism.    He takes Joel out when I'm losing my patience and he's always there to help like a work horse.  He's my rock.  But also he's Joel's rock.   This year he's had to go to meetings that I couldn't attend due to my full time course.  He's supportive of me doing this full time course because I think he could see if I didn't do it I was going to go mad.  Because being in the bubble of autism can send you off the wall.

To quote another mother called Lucinda Borer who's son Fred has severe autism and because of her the charity called the Fred Foundation was founded. www.thefredfoundation.org/

'Motherhood of a severely, complex autistic child is not only an achievement of sheer physical and mental strength, it is an achievement of the heart.   Without heart a mum wouldn’t do it and in many cases worn down over time, without help,  no longer can. A daily struggle that has been officially compared to the same level of stress that combat soldiers experience on the battlefield (please google it’s there).

I feel to brush this under the carpet and to not talk about this openly does a tremendous disservice to all the mums struggling for support.  Some of whom, confined to their homes with their children for years, wracked with desperation and lack of sleep (often autistic children don’t sleep at night) have jumped off bridges and taken their poor children with them.'  

Joely and Jake

I'd like to say we are getting our lives back slowly but living with autism is ongoing and it never goes away.  We just take it one step at a time.

Max, Holly and Joel Isle of Wight 2015

My other children Max and Holly love their brother and we always have holidays in the Summer to Cornwall and more recently the Isle of Wight.  We can't face a plane trip with three of them yet!  

Please can I tell you that siblings of children with autism are incredibly special.  My daughter has managed to get two scholarships to a wonderful school near us.  So please never feel sorry for siblings as they find their own way and are stronger for it.  Never.  Ever.  Give up.  Things do get better, one step at a time.

p.s.

Please support Lucinda Borer who is running the London marathon on 24.4.2016   http://uk.virginmoneygiving.com/fredfoundation  without this charity's support Joel wouldn't be having the incredible schooling and life he now has.