10 Positives of Lockdown, 10 Negatives of Lockdown. Living with Autism in a Pandemic and Joel turning 18 doesn't make him an 'Adult'

The last two years have been a blur given we have been through a pandemic that hit in March 2020 a few days before my youngest son's 10th birthday which was on 23rd March, 2020.  I had to cancel his birthday party which he really wasn't bothered about in any case so was I was quite glad to be spared another party especially as the year before he had a video game party van that turned up and all the boys loved it and the girls really couldn't stand it.  So we had to get my nail varnish out and turn it into a pampering day with manicures and hand massages for the girls with spa music and video game hell for the boys in a smelly large lorry/van.  That was a true experiment in gender stereotyping and while the boys were finally charging around the garden wired up after an hour of video game playing,  the girls were quietly indoors enjoying the peace away from the charged up boys.  I diverse....

10 Positives of Lockdown

1) Not having to host kids parties. I have never really enjoyed hosting kids parties so that was a real positive of lockdown to be spared two years of kids parties including having to host stray parents who surprisingly want to stay at the party with their child (I have always wanted to leave my children and run away very swiftly at any party they are lucky enough to be invited to although in Joel's case I always had to stay...)

Lockdown birthday for second year in a row, Max turning 11

March 2021 and lockdown hair in full glory

2) More family time together and more meals together, no commuting to work.  Working from home.

3) Appreciating any type of food delivered to the house especially coffee and flour at one point oh and making Irish soda bread for the first time

Irish soda bread gluten free too!

Home grown lockdown rhubarb

My brother Gavin's 50th in December 2020 spent outside having takeaway curry and cake.

Just about all in the photo on a lockdown walk

Lockdown cooking

4) Discovering more walks

More walks in Sussex

5) Doing daily workouts with Joe Wicks

This was Friday Fancy Dress with Joe...with a Pokemon and I think I am trying to be in 80s gear

This was in March 2020 or around that time when Max was still interested....he soon lost interest so I told him to do trampoline time instead while I jumped around to Joe Wicks....

6) Discovering hair clippers and cutting hair and deciding I could be the next Nicky Clark 

7) Discovering Disney Plus for the kids. Screen time rules went out the window.  Embraced Netflix, Prime Video and Sky too.

8) Saving the planet by not driving much, not flying abroad for a holiday and embracing the Staycation and not shopping for clothes...dressed pretty much in exercise gear for two years....

9) Not having to come up with any excuse to be anti social and not having lots of appointments....bliss

Staycation in Cornwall

10) Buying 100s of plants, planting, gardening, weeding and thinking I'm going to be the next Monty Don.  Growing fruit and veg and thinking I can live off my land like 'It's a Good Life' on some rhubarb, wild garlic and some strange looking potatoes and some very sorry looking lettuce. Buying garden furniture to create a new outside 'living area' to escape to!  

10 Negatives of Lockdown

1) Being a teacher, mother, wife, dinner lady, freelancer, cook for breakfast, lunch and supper, medical specialist, kid psychologist, hairdresser, cleaner, launderette service and general motivator

2) More family time together and more meals together

3) Cooking breakfast, lunch and supper....did I say that?  Who cares about Irish soda bread pics!!!!

4) Discovering more walks...really?  Can't we just go to Spain?  I hear myself thinking...

5) Doing daily workouts with Joel Wicks I switched to workouts with Rosie who didn't speak as got tired of answering Geography questions with Joe and he does like to talk.  

6) Making my children look like 1970s kids with really dodgy pudding bowl haircuts.

7) Watching the Daily News updates which eerily sounded like the theme tune to Hunger Games which I finally switched off 

8) Not flying abroad and going on a Staycation to Cornwall with the rest of Britain. Holly missing her French trip abroad.   Finally loosing any dress sense I ever had and resorting to t shirts and gym wear on most days

Joel and Jake on staycation year two of pandemic 2021

when we were allowed to travel.

9) Lockdown zoom parties (I didn't manage to avoid the adult parties)I love seeing people in person not over zoom.  I also don't drink so while people can get more sozzled to handle the whole situation I am sipping on tea

New lockdown outdoor furniture to create a new 'living area' 

the pool opened early in April 2020 hence the wetsuits

10) Gardening, weeding and thinking my garden is going to look like Monty Dons.  Got so over zealous in the beginning making pots of garlic plant that I thought would be like pesto but turned out pretty bad...

I diverse....What was it like for Joel?  He surprisingly was really chilled during lockdown and even though we couldn't see him for about 6-8 weeks we facetimed him lots and his lovely children's residential was a safe haven with a huge garden he played in and enjoyed being King of his Castle in his lovely big house that he only shared with one other girl Hannah.  Joel could finally come and visit us every Saturday after the initial no contact when the world seemed to stop for a bit.  Thankfully we have a pool that Joel was in every Saturday over the summer and think we opened it at the beginning of April 2020 for the summer season so the kids had this luxury and we didn't take it for granted knowing we were blessed to have the outdoor space to enjoy through this somewhat tedious time.  Joel has been through numerous 'licking' phases where he likes to like floors, lamp posts and other covid friendly surfaces and of course this behaviour didn't stop through the pandemic but I like to think his defences were strong for this reason and although Joel had covid in November 2021 he thankfully didn't have bad symptoms.

Lockdown laughs on the trampoline (Joel is the other side of Jake)

Joel contemplating another lockdown walk...

So although Joel was in his safe haven children's residential home up until his 18th birthday, we were told he would have to leave bang on his birthday - 30th July 2021to join an adult residential and because of lockdown it was pretty impossible to see any homes for most of 2021 and most were unsuitable in any case.  We finally found somewhere that didn't have senior disabled people (yes it does happen that suddenly an 18 year old disabled young adult can be put in with a 60 plus disabled adult) but a residential with young adults.  It was also near home which we are very adamant about and also close to his wonderful school as he has a place at the college there next year which goes up to the age of 23 (although on paper it says 25 most only get the funding to age 23).

What I hadn't expected was the total lack of services beyond 18 and how Joel lost every single specialist doctor he had overnight.  He turned 18 and was suddenly responsible for paying for some of his residential care and I was responsible for filling in forms for his Universal Credit that was vaguely told to me by the care manager of his new home.  There is no guide book for this and no social worker had sat me down and told me what I needed to do or what to expect.  This hasn't surprised me as most of my life with Joel has been about finding things out for myself and through other parents or by hiring specialists like educational psychologists to tell me where Joel should go to school for example.  No one ever sits me down and explains anything.  It just happens that you hear terms like 'lacks mental capacity' and 'best interests meeting' and 'he will need Continuous healthcare'.... you have to piece together this double Dutch language  and jot down some of the jargon and then refer back once it slowly clicks in.

Basically Joel turned 18 and I had no more parental say over his life.  This was now down to 'best interest' meetings where a bunch of professionals to talk about Joel who don't know Joel like I do and then decide what's in his best interest.  Thankfully my viewpoint and Jake's viewpoint were taken into consideration recently when we had a best interests meeting about Joel's health but it seems a long winded way of doing things now.  Also no one talks about funding and what the best direction to go down for Joel would be - via social care or NHS Continuing Healthcare.  Currently we are applying for Joel to have Continuous Healthcare as he has very complex needs and before he was 18 he also had a list of NHS specialists that have been dropped even though his needs are still the same.

Because we want to have the final say over Joel's healthcare, wellbeing and finance we now have to apply to be Joel's Duputy - this is for people who lack mental capacity and the equivalent of Power of Attorney (for those who don't lack capacity they can allot a Power of Attorney).  But as Joel lacks mental capacity we have to apply to the High Court Judge to ask if we can be Joel's Deputy and obtain Deputyship for him.  Being his parents is apparently not enough.  We need to have a reason to be his Deputy and go to the Hight court judge with a reason.  We have engaged with a Specialist Educational Needs Lawyer to help us through this very complicated process.  Which leaves us with very costly fees and still no idea what reason to use.  'I'm his mum?' is not good enough.  That still stumps me.  I was told by one lawyer that some parents might not act in the best interests for their children so this is why you almost have to justify why you want to be their deputy.  God help those kids who don't have parents who just go into the 'system' and have a social worker as their only person to watch over them.  Joel's social worker has probably been to see him once since he moved to his adult home which is now over six months ago.

So for Joel's 18th he moved the day before his birthday to celebrate his birthday in a hotel in Dorset called Knoll House I can only describe as Faulty Towers.  But he had a lovely time in the jacuzzi there and enjoyed a good birthday with his Godmother in Corfe Castle bombing it around on a tractor in the countryside and enjoyed a steam train ride so as long as it moves Joel was happy.

In Faulty Towers Hotel for Joel's 18th

Joel having a very happy 18th Birthday on a farm truck

Happy Birthday Joel!

It's been a bumpy road moving into 'Adult Services' and Joel isn't an adult he is still enjoying Peppa Pig, Thomas, Fireman Sam and The Hungry Caterpillar'.

Most 18 year olds can do the following :-

Drive

Work (Joel was sent his National Insurance number which made me sad as it was another reminder that he wouldn't be able to work)

Live independently

Travel

Socialise and have relationships

Go to parties and concerts, festivals etc

Look after themselves, dress independently and wash themselves, cook for themselves

Going on to further education, university, college, apprenticeship scheme

Joel cannot do any of the above apart from dressing himself just about.  He still loves his dad giving him hot potatoes which is a real priority on a Saturday and he enjoys telling us to copy him when he talks about a train to call it out with him.  This is not the average 18 year old stuff and that's ok.  It's just another milestone age where most parents are breathing a sigh of relief that their young adult child is leaving home and getting a job.  We don't have that as we don't know what the future will hold for Joel other than trying to make damn sure he has a life which is as meaningful to him as possible.  Music therapy is meaningful to Joel and so is swimming, trampolining, school and next year college will be meaningful to Joel.  Family and 'home' is meaningful to Joel as is riding and fish and chips and hot potatoes from dad. I meant to say these meaningful things like riding and music therapy that Joel had funded in children's services stopped being funded when he turned 18 so we have kept these going and in the meantime are trying to get funding for this.  Again, Joel has not changed overnight and is used to these things being in his life so why take the funding away?   Joel's holidays to Cornwall seeing extended family is meaningful and so is Lily the dog and 'Blue' the dog from his past who belonged to his Grandparents but he will still talk about.  As long as we can keep Joel's life meaningful and purposeful and if he is happy we are happy.  That's it.  No 'just passed your driving test' celebrations.  Just well done Joel for saying a new word and we are happy because that is progress and that is meaningful to us.

Joel's happy place with ipad on trampoline

Lockdown walk.....

Lockdown lake swimming

Staycation in Joel's favourite place in his trailer at Granny and Grandpa's House

Fire engines, electrics and autism

Joel and Dad - Jake and me on his 17th Birthday before going into the sea he will only go in on Dad's shoulders requesting "piggy back"

Joel turned 17 on July 30th this year and usually would have been at his camp he goes to annually for disabled children in July, https://www.woodlarks.org.uk but due to lockdown this was cancelled so he came to join us on the coast for his birthday and spent it with his aunts, cousin, siblings, his dad and myself.  I couldn't help thinking during lockdown about families of children like Joel who had services withdrawn or semi-withdrawn putting more pressure on them.

I don't underestimate how fortunate we are that Joel is now in full time residential care and can come and see us every weekend without us being so exhausted we don't appreciate having him.  But it took quite a few years of knocking doors to get this in place with social services and this happened gradually from when Joel was around the same age as Dylan Freeman who had severe autism age 10 who died last week after being suffocated by his mother Olga Freeman who had struggled to look after him in the last six months.

I know that this year has been an incredibly challenging time for parents in lockdown but for parents with severely disabled children in lockdown, where all the services were taken away from them it has been unbelievably difficult.  When I read about Olga Freeman who was charged for killing her autistic son I immediately sympathised with her and felt her pain and unbearable suffering.  

When Joel was 10 I was utterly exhausted from caring for him full time for his young life as well as looking after my two younger children age 8 and 3 at the time and even with a supportive caring father living at home it was still too much to deal with due to the 24 hour care Joel needed and lack of sleep and external support services.  We didn't live near family either as just sometimes someone lending a sympathetic ear and a cup of tea can relieve the endless monotony of caring for a child with a severe disability.  

For Olga Freeman, a single mum having to care for Dylan who had severe autism she was on her own without any support this proved too much and she took his life.  I have been on the brink of desperation with Joel around this age at 4am without sleep and Joel flailing and screaming similar to how Dylan sounded and had to walk out of his bedroom and get my husband to take over because I can only compare it to slow torture for the mother and it becomes so unbearable there seems to be no way out. 

Having a child with severe autism can be very isolating at the best of times; we don't fit in with the usual 2.4 families who can meet up and let their kids just have fun playing while parents socialise.  Having a child like Joel means that a parent can never sit back and relax because they have to be hyper vigilant at all times and keep a constant eye on their child.  A recent study shows that nearly 1 in 5 parents of kids with autism who participated in a new study had enough symptoms of post-traumatic stress disorder to qualify for a provisional diagnosis.  

https://www.disabilityscoop.com/2020/03/10/autism-parents-may-be-at-risk-for-ptsd/27951/#:~:text=Nearly%201%20in%205%20parents,percent%20met%20criteria%20for%20PTSD.

I never had PTSD formally diagnosed as I was never asked but I displayed all the symptoms.  When I arrived back to the UK from Australia ten years ago I went to a GP with Joel age 7 and this GP said he'd never seen such a severe case of a child with autism in all the 20 years of practise yet never once did he ask me about my mental health and what support I was receiving.  He also said he didn't know much about Autism but could tell me about Downs....At the time I was receiving no respite services and I don't feel things have moved on much over the last ten years reading the news about Olga Freeman and how she has been let down by local services.  I strongly feel the Government have been negligent in helping parents with children living at home with severe disabilities during lockdown by withdrawing services making parents like Olga Freeman feel utterly abandoned and more support needs to be put in place with or without lockdowns in the future so that tragic deaths can be avoided in future.  

I don't blame Olga Freeman as she did not have any support in place for respite and as a parent with a child with severe autism this is vital as it can't be done alone.  

In a recent BBC article about special needs families in lockdown Ali Fiddy, chief executive of the Independent Provider of Special Education Advice, said her organisation was seeing families "who are very clearly struggling". There was definitely not enough support being offered for parents, she said, with many families feeling "utterly abandoned".

https://www.bbc.co.uk/news/education-53248609?fbclid=IwAR29T8G_Brnd6nctwqnZn7JdEtjw3vR8JtBlKPFhli_F2qKOFgjS65lIS-8

We had Joel stay in Cornwall for his annual holiday there to see family and even after five days with two carers we were exhausted and we were lucky that he was happy to go back to his wonderful residential home and was in great spirits when he returned singing songs and singing his family member names to the residential staff who were so happy to see him like this. They are going to be printing some canvas photos of him and his family so he has them at home as he adores looking at photos and photo albums.  

We did have to call the fire brigade as he got stuck up a tree and was asking for a 'ladder' to get down.  Luckily the fire service were amazing and Joel co-operated with them very well.  This is just one hazard for parents who have children or teenagers with autism as many like to bolt or climb high without any fear of danger.  Joel also put his finger in the light socket so we had to go and buy some gaffer tape to stop this from happening.  We have to be one step ahead and hyper vigilant at all times.  He also managed to get all my makeup out and put lipstick over clothes and the walls like a toddler would do.  

The thing with autism is it's tiring.  It's tiring with babies and toddlers but they eventually grow out of this stage and parents no longer need to watch them and they also eventually sleep through the night. But with children and teenagers with severe autism they don't grow out of the toddler stage and often don't sleep, plus they are also non verbal which makes it impossible to understand if they are in pain or need help and for some parents this becomes too much to handle.  So next time you judge a child who's having a meltdown and flailing about screaming think about the parent for a minute and if you know anyone with a child with autism; reach out.  It's never too late to offer support even if it's for the parent to have a supportive friend to talk to without being judged just to listen.  I'm not sure Olga had much of this. 

RIP Dylan Freeman xxxxx

Joel Stuck up the tree in Cornwall

Joel with the kind Firemen who let him go in their Fire Engine and gave him their helmet to try on

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'.

Family activities with a teenager with autism and lobster sandwiches Summer 2018

Why do I not relate to parent social media posts with their kids going back to school photos and lamenting that they are going to have separation anxiety being away from them after the long Summer holidays ?

A family outing with the kids which Joel can take part in!

I am positively thrilled that my kids have gone back to school and I do not have separation anxiety at all.  It means I can get back to work and into my home studio to record an audiobook I've promised to do but luckily am not on a strict deadline.

I was sad that my youngest child really didn't want to go back to school and put up a protest this morning but I wasn't sad to see him go.   My kids are not particularly excited to be going back to school either which I think is a normal reaction but was slightly alarmed to hear a friend say her kids couldn't wait to get back to school and were missing school in second week of holidays !  

During the Summer holidays I was banned from mentioning the 's' word (school) during the holidays from my daughter age 13 even though she came top of her year in her end of year exams (I just couldn't resist putting that in).  But when you have a child with severe autism (my oldest Joely now 15) you have to celebrate anything small or big that comes your way.  

I have started a few posts throughout the year for this blog and just didn't get round to finishing them. Maybe because I was in the middle of having an adolescent with autism and it really didn't seem like my number one priority and also because it's sometimes easier to stare into space when it all gets too much.

Joely at his favourite holiday location at Granny's house

One unpublished post was about autism discrimination on public transport.   Our carer who took Joel back from Cornwall last Easter was told by a fellow passenger to have him under control.  Joel was going through a really bad and unsettling stage in his life.  Sue rang me and cried down the phone to me from Reading and she is possibly the most experienced and best carer we've ever had.  I felt awful for her as she'd had a terrible journey with Joel and then been chastised for his behaviour.  He'd been on the wrong medication and actually changed from his generally laid back personality to a young man possessed in the space of a few months.  So we could no longer expect him to sit in a car without pulling the drivers hair or leave him alone with his younger brother Max (age 8) without him trying to attack him.  We actually couldn't take him anywhere other than home where we knew he was safe. Joel was so unhappy for quite a few months earlier this year it was distressing to see and I knew he was on the wrong medication and demanded he come off it and changed psychiatrists after this as the previous dinosaur didn't seem to take on my concerns after the first few months Joel was on these meds.  In fact he did the opposite and put up Joel's dosage and this made Joel worse.  After seeing Joel's new psychiatrist through the local CAHMS (Child and Adolescent Mental Health Services) department I was relieved that I was listened to and treated like a normal human being and not some robot going through the system.  Joel is one of these kids where if it says on the box all the good things he will have the small percentage of really not so good things on the 'side effects' list.  The dinosaur doc did actually admit that all of Joel's behaviours and symptoms were side effects which do happen in a small number of cases.

So you'll be glad to hear Joel is back to his normal self after coming off the meds a few months back and has just come back from Cornwall where it was noted by extended members of the family that Joely was happy and back to the Joely we all know and love.  Enjoying tickles, swimming in the sea and generally being squashed by his dad.  (some autistic people like the heavy weight on them as they get what's called 'feedback' for their body in space - its's called proprioception or something like that and I'm not very good at explaining the technical term so apologies for that).  

I did start another post called 'Autism, Shaving and Lego'.  That was back in March so Joel needed his first shave age 14 as he was developing a very wispy moustache so dad shaved it with an electric shaver and this was another ground breaking experience!  Joely was quite happy to be shaved by his dad but the wispy moustache has turned up again and it's something I haven't discussed with his carers where he resides yet.  There has been enough day to day stuff to talk about with them including his shoe size (10)  and height which I'd say is 5'9" now so he needs new school clothes and new clothes in general. Graham his  key worker said he's going to take him to Sports direct so that he can choose a pair of trainers.  I have also bought him some cool tops going on what I think cool boys of 15 might wear because Joel is not bothered by anything he wears.  For this reason alone I think that makes Joel extremely cool.

I've spent the year looking at school and residential settings for him and happy to say he's staying in his current residential setting now until he's 18 and he has an amazing garden to play in and goes on day trips to Brighton, goes climbing, riding, swimming and has music therapy lessons there.  He's also changing schools and going to St Pier's in Lingfield from January which also has a college so hoping he'll stay there til he's 25.  It has 66 acres and a farm and lots of great facilities so I feel blessed he's been offered a place.  They are geared up to help with adolescents too and this is what he needs.  There are also male role models there which he doesn't have in his current school where all his teachers and TA's are female.  Joely does relate to males especially his father and I know this will also benefit him.

There are a million things you can do on Summer holidays with kids if you a) have the budget and b) don't have a huge budget and are resourceful and can think up things like going for walks in parks/countryside... and public libraries can be helpful for up to an hour in my case.  Some art galleries are free too and theatre in London in August with kids is cheaper apparently but I've never managed to get there then.  Usually because having a child/teenager with autism it's virtually impossible for us as a family to do any of these things other than the walk in countryside away from other human beings because Joel usually finds mud of some description and manages to get it all over himself and anyone around him.  This isn't a good look for him or others.  He also tends to strip all his clothes off if we go near a local lake and has no inhibitions about his naked body and leaps into the water skinny dipping and embarrassing his sister so that she goes to hide in a bush somewhere while passers by are looking in bemusement.   So apart from going for countryside walks and swimming at home we don't really go out to family entertainment places.  We did try this year to take Joel to the Natural History Museum in London and got up there on a smelly old bus where the driver played Radio Gold which must have seriously upset Joel's music tastes because he threw his ipad at the driver with a near miss thankfully.  Not an easy bus trip.  Not an easy museum trip either.  Joel lay on the floor in the museum right by the main staircase and refused to go anywhere.  Luckily the carer Sue managed to scoop him up and take him to Hyde Park where he was fine wandering about the park looking at the lake and enjoying a cup of tea at the cafe.  Which meant we could take Holly and Max around the museums and do a 'normal' family activity.  If we hadn't brought a carer with us this family outing would have to have been cancelled.  So I can understand the isolation that families feel who have severely disabled kids and we were blessed to have Sue with us.

Joel's annual trip to Cornwall was happier for us this year as it was shorter and more manageable and Sue took him back to Sussexon the train and there were no complaints so at least that was better.   We usually take him to the beach and he loves swimming in the sea so this is another activity we can do with Joel as a family.  This year I decided to try something new and thought as a family outing we could try the water sport where you all lie on an inflatable called a pancake which is tied to the back of a boat and then get flung around in an estuary for about half an hour.  Well even though I didn't know what to expect with this new activity I was blown away by Joel laughing solidly for half an hour.  That was worth all the tea in China to hear that and was the best day of the year for me to be surrounded by my boys clinging on to a handle on this pancake and giggling away!  So this is going to be a regular family trip and Holly was thrilled to see her big brother so happy for such a long period of time which made the whole experience so worthwhile.

Joely and I on the pancake -he does tend to have his hands in his ears if he isn't normally wearing his ear defenders as most things in life are too noisy for him but we didn't take them on this occasion.

The Pancake experience

Going on a family holiday to Cornwall is usually on a Cornish beach in wetsuits in cold and windy weather eating soggy sandwiches but Joel doesn't mind as long as he can get in the sea.
One totally random line I heard from a lady speaking to her husband/partner walking up the cliffs with their little children in tow were 'darling we must get some lettuce for our lobster sandwiches'.  Now that's when you know you're in the 'golden triangle' of North Cornwall where David Cameron and Gordon Ramsay reside.

In the time Joel stayed at his Grandmothers I left Sue the carer to look after him while we took Max to our usual A and E excursion (we always end up there for something with one of them ).  This time it was about Max's mosquito bites he'd had in Spain which had become infected on his leg.  So we got some antibiotics and two hours later we were back in the village where we stay and saw Joel sitting on the bench outside the local postoffice/village store chomping on a big bar of Cadbury's chocolate having got through a whole bag of wine gums.  I quickly got out of the car to check if Sue was with him and had a puzzled Shirley behind the counter who's about 80 something.  I said is anyone with Joel?  She said no there wasn't to which I replied 'how much do I owe you Shirley?' and she told me what Joel had taken from her store.  So after paying two bags of wine gums and two chocolate bars worth later we took Joel home to a frantic Sue.  It only takes a few seconds with Joel and he can bolt if he knows his way out of somewhere and he certainly knew how to take himself off to the village store within minutes!  I happy ending to a nerve wracking afternoon.  Thankfully he hadn't travelled any further and looked very relaxed on the bench with discarded sweet wrappers all around him.

So for all the parents missing your darlings now they're back at school and for all those secretly happy they are back and not really missing them; I was relieved to hear I'm not really alone in the check out in M and S when I was buying Max's school trouser's yesterday along with lots of chocolate.   I made polite chit chat as you do to the friendly check out lady saying the school holidays were nearly over and that I was in need of chocolate and she said she'd seen a lot of stressed mums going through the cashier with school uniform and lots of wine!  I am not alone; you know who you are.

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.