Autism Discrimination on Public Transport

For a parent in the thick of adolescent autism I don't pay too much attention to Autism programmes or Autism Awareness Month because like other parents dealing with the daily grind of autism it doesn't mean much to them.

Autism, shaving and Lego

My severely autistic son is now 14 and I was trying to ignore his wispy moustache until my 12 y

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

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.

Summer 2014 - for Hazel

Joely and Max on the trampoline and Granny and Grandpa's house Cornwall 2014

Living with a child with autism has meant that I haven't had much time to write about what it's like living with it.   I seem to have spent an awful lot of time clearing up paint this Summer.  Joel has high sensory needs which means he craves liquids and getting his hand on it. He managed to find proper paint in the shed twice managing to pour it over him and the floor leaving a trail of foot marks behind him.  This then involved Jake using a hose down to his boxer shorts and me stage managing from the sides using white spirits at short notice to clear up the trail.   He's also found kids paint which I'd hidden on top shelves in the kitchen just last night and so we had to give him a shower to get the blue and red paint he managed to put on his hair.  That just about sums it up.  Clearing up similar liquid items like shampoos and trying not to get cross.  Because this is really not Joel's fault.  He can't help it and we can't remember to do everything like lock up the shed or lock the kitchen door when we're trying to chill out and Joel's raiding the kitchen for paint and cereal because that's life and we're not superhuman.

Messing about with Joely at Baby Bay, North Cornwall

I also spend a lot of time at my desk sorting out Joel's appointments which range from gastroentirologist, urologist, to paediatrician to tropical diseases clinic appointments at Great Ormond Street hospital to treat Joel's PANDAS.  Joel is still on antibiotics to treat this infection which basically attacks the brain and I think this has helped him but I haven't seen any great gains apart from recently he's been sleeping a bit better.


In Cornwall this Summer I noticed a few remarks from relatives saying he's improved in his talking a bit.  I had a wonderful au pair from Madeira - Joana who is a trainee speech therapist at Uni and wanted to work with kids with special needs.  She was a Saint and even helped settle Joel to sleep!  He wanted to curl up with her as he likes the company and she never complained when he crashed out with her.  I was incredibly blessed to have her and she always saw the funny side of things which is what you definitely need if you want to get through a Summer with Joely!  Lots of time was spent in the sea and on the beach and having lots of tickles because Joel requests tickles probably about 20 times a day.  I said to him the other day he really can't go through life requesting tickles.  But maybe he can and to hell with it if that's what makes him happy what do I care?  I just want him to be happy because he has spent a lot of his life in pain and in anguish so we have to get the basics right.

Joana and Max Baby Bay, North Cornwall

Walking with Joel and Max North Cornwall Summer 2014

I wish I could tell what's bothering him on the bad days though when he's bowled over in pain or bashing his head and crying out in anguish.  As a mother of a child with autism this is probably one of the most painful experiences.  I always think I'll be able to deal with this better but I don't know if I can ever deal with this better.  I just tell him it'll be all right and that's all I can do.  There are so many things you think you can do to help a child with autism and at the end of the day he gets lots of love and I hope that somehow this makes a difference.  I went to see his new teacher at his school Step by Step outside East Grinstead as he's just moved up to the senior school this September and his teacher Anna said 'we all love Joel'.  He has a lasting effect on lots of people who look after him including the lovely volunteers at Woodlarks Camp which he went on again for the second year running.

He is also moving respite houses to a bigger house with a huge garden about 20 minutes away from us in the country and I had to meet the staff there last week.  I walked in to a room of about 20 people and luckily had brought my sister Dominie along as it was a bit daunting.  Dominie's comments after were 'did you see all the cakes!'.  Anyway Kim is running this house and has done for 17 years and she is a wonderful lady and introduced me to Mark who is Joel's new keyworker and he was very kind and funny which was refreshing.  Joel is going to be having tea there this week after school and will gradually build up to staying there for half the week and half the week here.  I am happy it's near his school and hope he likes it there as it will mean we get more balance at home with the other siblings.  Max has been quite demanding this year and has just started school.  He needs speech therapy and extra help at school and so he's been a worry to us too.  He is a very different boy to Joel though and he always tells me when Joel's been doing something he shouldn't!

Joel giving Granny a kiss Summer 2014

Holly continues to be an amazing sister to her siblings.  I took her to see her God Mother in Appledore while Joel was on his camp.  So far living with autism hasn't done her too much damage. I think too much time is spent worrying about the effects of the other kids that autism has on them.  But for Holly her good natured and fun personality continues to grow.

Max, Holly and Joel the tight rope in Cornwall with Jake

I have been freelance producing when I'm not sorting out Joel's life !    This has been good for my sanity levels and actually being at home managing the kids is much harder than any producer job or any other job I've ever had.  I have even started a drama course part time on a Friday and am loving it.  I have spent 11 years with my life on hold.  It's time to get on with it.

Hazel helping out with Joel and holding Max at Holly's 5th birthday party four years ago 

Life's too short and I was swiftly reminded of this when I was told last week that Hazel - Joel's carer from about three years ago had died of cancer.  I knew she'd been unwell but she never wanted to talk about it and always wanted to hear about the children.  She was a beautiful caring and funny lady who always had a sense of humour.  When I was tearing my hair out about something Joel had done she would make me see the funny side of things always and for that I thank her.  She took Joel to cubs for over a year and would come back laughing when he was covered in mud saying that all the other kids wanted to roll in it secretly too and that she would tell them so when they were staring at Joel.  She also took him to his holy communion classes and had a giggle when Joel started singing happy birthday when he saw the candles lit for prayers.  She will go to heaven. She was someone I'd like to thank for everything she's done for our family.  Holly has a present from her in her room which is a glass wind chime with the word 'LOVE'. And Hazel did just that - she loved and never judged.  Hazel is one of the angels I have met along the way on this endless autism trail and for that I am a little bit richer.

Hazel sitting next to Joel at Holly's 5th birthday party

Hazel with Joel after his first Holy communion three years ago.