The Endless Highs and Lows of the roller coaster ride of a Teenager with Autism

Earlier this school holidays while Joely (below age 16) went on his camp for disabled children which has been a Godsend over the last 5 years, we went on holiday to Sardinia with our two other children Holly age 14 and Max age 9.

Joel this August age 16

Joel with his beloved Dad Jake asking for 'hot potatoes'

One evening at dinner I looked over longingly at a family who had three children about the same age as ours and I looked at the teenage boy and I suddenly thought of Joel and wished we could have been a 'normal' family and said to my husband that I never stop mourning for our son and what he could have been and that I wished he was 'normal' and was with us.  But then Jake looked at me and said "yes but then he wouldn't be Joel would he?".  I had to take that in for a minute but then I understood what he was saying to me and I realised that we have the most perfect boy in every way and we love him unconditionally and I had to accept that he did have a point, even though it can be very painful at times to accept.  

This was a profound moment for me because my husband did not want any other child other than the boy we have been given and this humbled me because his love for Joely is complete and he doesn't question why, how, what if, what could be, what could have been; he just lives with the here and now and being in the moment with our boy.  He accepts Joel for all his quirks (at the moment his latest thing is licking everyone he meets). That doesn't mean he wishes Joel wouldn't improve and make gains but it's about accepting him for who he is with his autism and just making the best of what we have been given and looking at the positives no matter how small they can seem sometimes.  This sounds so idealistic but I guess it is acceptance of Joel's autism which has taken me so long to grasp.  When he was two I couldn't accept it and wouldn't accept it and would fight it with educational therapies (ABA), homoeopathy to reverse the MMR jab, kineisiology, diets, osteopathy, dipping him in the holy river water in Lourdes, other medical treatment for ADHD and ASD, Occupational therapy, Speech and Language therapies you name it I tried it and this isn't to say any of it didn't help I think it all helped him in some way, but I was expecting more results and praying for a miracle.  I would love a miracle now and I never give up hope for his future and for him to improve in all areas but for the time being I have to accept the situation and make the best of the hand I've been dealt.   

Joely and me 

Joel and Lily on one of his favourite country weekend walks with Lily

Joel with his beloved sister Holly and brother Max in Cornwall this Summer in his favourite trailer at Granny and Grandpas

Because of Joels very high needs, it's not possible to take him abroad without full time help and carers and it just isn't possible for us at the moment.   It doesn't help that he usually doesn't sleep when he's out of his routine so we would be up for 24 hours and have the other children to think about.

At 16 Joel if he was 'normal' or 'neurotypical' he would be classed as an independent young adult.  We've been sent his National Insurance number whatever that means for a 16 year old with severe autism who can barely write a sentence.  Although he has improved with his speaking since he started his new school this January, at best he can say his needs ie 'I want chips please' which would normally be 'chips' and then with a prompt  he will say it like this 'I wan chip pleea' but even this is a mini celebration when he forms a sentence and no word is ever taken for granted.  We praise him every time he speaks and makes the effort to say a sentence, though when he says 'runny poo' and gives a cheeky grin looking at me for a reaction as he knows this isn't appropriate language I usually ignore him but sometimes I find myself repeating him as I'm just happy he's saying anything even if it is totally mundane and unrelated to anything he's doing!  

Joel has a sense of humour and this is shown through different ways he can ask for 'tickle's, 'hot potatoes', wanting to go 'running' 'trampoline' and cheeky smiles which somehow manage to pull at the heartstrings of so many people he meets from his teachers to his carers in his residential home to his family. 

Mucking about on the trampoline with Lily the dog who usually follows Joely and even though he takes off her collar she is here with it in her mouth asking for someone to put it on

Joely on the trampoline having a play fight with his brother Max and dad and the dog Lily

We have got through another marathon year with Joel.  He was on the wrong medication for his ADHD for six months and even though I knew as a mother he shouldn't be on them the psychiatrist advised to up the dose which made Joel worse, unhappy, very difficult to manage with compulsive behaviours and this changed his happy go lucky personality.   This lead me to insist on changing to a different psychiatrist to someone who actually listened to me and got Joel back on track with a different medication which he was on before that didn't have such terrible side effects the other one had.  We got our happy Joel back and even though some behaviours are never eliminated (like the licking), he is, overall, more manageable and easier to take on outings without running off suddenly onto a road in order to get to a boulder the other side which he wants to lick.    In this photo above on the bumper cars Joel compulsively licked my cheek probably the whole time we were on the bumper cars which gets a little bit tiresome and it really isn't pleasant as it looks like he's going to kiss you which would be nice but instead I get a big slurp and an unpleasant lick which no matter how many times you tell him to stop he will continue.  He also says words like 'snapchat' which his 12 year old cousin was impressed with thinking Joel wanted to 'snapchat' but he was asking for 'flapjacks' which were in my trusty rucksack.

Joely and me on Brighton Pier on one of his favourite rides the bumper cars

This year Joel changed school in January as mentioned and it's been the best decision as he's really improved with his speaking and learning and we are so happy he can stay there for sixth form and hopefully college which continues until he's 23-25.  This buys us some more years for the time being. The worst question you can ask someone with a child/teenager with autism is 'where do you see him in the future and what will you do?'.  We can only live year to year and plan his life accordingly, not looking too far ahead.  We live moment to moment and count every little tiny improvement as a blessing.

Joel also went full time in his residential house coming home on weekends and for Cornwall holidays and this was after years of not sleeping which was affecting his siblings especially his younger brother who kept getting woken up in the night with Joel switching on his light in the night.  Since Joel has been in his residential 20 minutes away we have slowly caught up with years of disturbed sleepless nights and the fog has slowly lifted.  We are eternally grateful for the help his amazing house and carers have given him and us and I honestly don't know how I would have coped without this help.  This is not for the faint hearted.  This is tireless work and I think we are one of the lucky ones to have this support with Joel.  This has been because of tireless meetings with the social worker, doctors, paediatricians and other professionals to get him where he is.

There are endless highs and endless lows and I'm just holding on like I did with Joel on a roller coaster yesterday in Brighton; and you know what?  When I was screaming with terror on a rattling ride he put his arm around my shoulder protectively and just held on to me reassuringly, and just for a few minutes I felt like he was totally and utterly in control of the situation and of my feelings and that he was somehow telling me to 'hold on tight mum, it's all going to be alright'.