MS diagnosis in the family

Heading to Cornwall for New Year after having a lovely Christmas at home with my family and brother Harry and sister-in-law Hannah.  I am amazed at how far Joel has come - overall he was very calm apart from the Christmas eve church service where the ipad kept him happy for a while but it all became too much for him so Jake took him out for a walk.  He is happy to walk and the Ashdown Forest meets all his sensory needs - lots of mud squelching, water, fresh air and open spaces.





Jake, Harry, Hannah, Joel and Holly on the Ashdown Forest

Joel on Christmas day walking on the Ashdown Forest

We are all in shock as my poor sister Sian has been diagnosed with MS.  I had done an interview on my radio show at 107 Meridian FM with Murray Ferguson who has MS and is an inspiration to many sufferers of MS in the West Sussex area and beyond.  You can listen to it on this link :-http://snd.sc/wLQOUL 

It makes you appreciate the little things in life that we take for granted.  Walking to the shops, running up the stairs, eating breakfast.  I hope things get better for her but at the moment it's the bereavement part of the diagnosis.  I can draw similar parallels when we received the diagnosis that Joel had autism and Jake and I were in our sitting room in Australia in flight or fight mode.  We were calling our family and friends from the other side of the globe with this traumatic news and we were looking for answers and solutions to  fix the problem.  Like MS there is no cure for autism but there are therapies to help make it better and manage the autism and MS can be managed but it's the initial shock of having a disability diagnosis and getting into the system with the paperwork which is hard.

When returning from Australia three years ago I had to get Joel into the system in the UK and filled out the Disability Living Allowance forms while feeling exhausted pregnant with Max and with Holly age 4. Jake was still in Australia finishing up his work out there and trying to sell our house.  It was a gruelling process and to the system Joel was another figure but according to them he wasn't disabled and it took a year to get the allowance and even a disability parking card took me nearly going to a tribunal even though I showed them I had one from Australia.  Don't ask me how I got it in the end but I did and I had to keep on knocking down the doors.  I even had to get him re-diagnosed here as his first diagnosis was PDDNOS (it means autistic features but not really autistic).  So had another battle on my hands trying to see the specialist autism paediatrician in London and her team who we eventually saw and got severely autistic written on paper which would help with my paperwork.

My sister is filling out the countless forms as will be many more who have just found out they are disabled or a family member is disabled. There is no guide book for autism as far as I can work out the system gives some disabled people more rights and some less depending on which county you're in as far as I can work out it's pot luck and a lot of hard work!  I had to fight to get a social worker initially as I was signed off as it was written that Joel had a good haircut and was presentable and nothing much looked wrong from the initial trainee social worker who came to see me.  (I am going to be adding a blog about middle class prejudice in the autism world soon to elaborate about this a bit more).  We all know it's not about what's going on from the outside and so many parents with children with autism are on the edge.  We were living on the edge in Etchingham when we had no disability allowance and just three hours help a week.  This was hard with a new baby in the mix.  Joel was also regressing heavily into his autism as he was in a temporary placement at a school for disabled children trying to get a statement for him but he ended up being there over a year but the autism provision was poor.  We are so lucky he's now in a school which can meet his severe autism needs.

Thankfully we have a social worker now and more hours help and two nights respite in the week finally as he just isn't sleeping at the moment so that gives us a break.  That's another story but we had to fight for every hour's help.  We need more help in the holidays as all the provision is down at the moment and with children it's tiring at the best of times.  We're getting there but will need to get more help arranged for holidays.

I guess we all have to handle each situation we're given the best way we can and take each day at a time.  When asked where I think Joel will be in the future I say I don't look beyond a year at the most.  I guess this is how anyone with a disability such as MS may look at it.  To keep it in the day and make the best of the situation.  I look at Murray and know he has re-invented himself after an MS situation as he discusses in his Nine Point Plan and perhaps we could all take something from it:-

Murray Ferguson's One Life - Live It! A 9 point plan

1. be at one with yourself
2.make realistic expectations of yourself
3,.approach problems actively and creatively
4. reinvent yourself
5. live in the present
6. participate
7. be willing to ask for help
8. feel the fear and do it anyway
9. see good in all

Happy New Year folks.  Hope 2013 is lucky for you.

Alicexx

The Nativity Play

 

I was very proud this week of my two year old who made a grand entrance into the pre-school hall as the one and only lamb in the play,  (there were about ten angels so he had a walk on part for sure).


Entering with the three Kings, he proceeded to walk centre stage with thumb firmly in mouth looking at audience with his head slightly cocked to the side wondering what all these people were doing. He certainly was cute personified (sorry if you don't like that word but it's the only one that will fit here).  The audience gave suitable coos and ahhhs when they saw him.


Maximilian acknowledging me in school play

The Kings and lamb then sat to the side of the stage whereupon Maximilian spent most of the time trying to take off his lamb hat which was clearly bothering him as he couldn't really see very much with it on. He eventually managed to take off the hat and decided to ignore  the director  - Head of pre-school teacher directing from the side lines and wonder around the stage while Mary and Joseph were busy concentrating on their lines.



I don't like this hat

It's coming off

Well it's not all about Mary, Joseph is it?

What's all the fuss about?

 

 

 

Not sure if I'm meant to be upstage...

He eventually ended up with Rudolf dancing in a circle and taking no notice of his role as a lamb and had taken half his lamb suit off revealing a Welsh rugby shirt inherited by his cousin so think his popularity was waning at this point.

Dancing with Rudolf with lamb outfit slowly being discarded

I was very proud of the lamb and it made me think back to my role in a nativity play.  I am convinced I was a tree or third pall bearer to the left or some obscure part in a tea towel.  I was also one of the seven dwarfs (Dopey) and remember even then feeling humiliated for not playing Snow White who had ringlets and was a right little madam.  I remember her sniffing her nose at us dwarfs and resembling the character of Miss Piggy more than a caring Snow White. 

I was never to take a stage role in my pre-school career and by the time I got to my convent I did play a protagonist but was a man, so that was even more frustrating as everyone burst into laughter as I entered onto the stage.  I commended myself for not bursting into giggles too as it was very serious business playing an old major and sitting like a man upright and with hands firmly placed on legs when you are sixteen.  It was so hard to keep a straight face I remember now seeing one of the most naughty girls in the school right in the front row desperately trying to make me laugh.

Anyway the pre-school nativity scene was very sweet and the mother of Mary in the play got some good shots of herself with her little daughter.  I asked her later if she played Mary in her school play when she was younger because she looks a bit like I would imagine Mary to look like; dark hair, lovely olive skin and kind face, slim build etc and she said yes she had played Mary!  Her name is Angie and she is one of the nicest mothers in town always friendly and with four kids so don't know how she keeps her patience and smile. Am hoping she secretly shouts at her children otherwise she wouldn't be normal would she.

This traditional nativity scene made a change from my daughter's pre-school performance which made no reference to baby Jesus but was all about a fallen angel.  Very odd play where she played a star.  It was quite comforting to see that things haven't really changed from my day; even my children are following in my footsteps in their bit parts.  Maybe one of  them will get a better role next year.

 

 

Alice Gordon Clark - A Day in the Life of...living with autism and other things...: Sleeping, lights, keys and autism aren't the best ...

Alice Gordon Clark - A Day in the Life of...living with autism and other things...: Sleeping, lights, keys and autism aren't the best ...: This week I have had Joel up two nights where he just can't sleep.  Last night I ended up lying next to him and falling asleep just to kee...

Sleeping, lights, keys and autism aren't the best combination

This week I have had Joel up two nights where he just can't sleep. 

Last night I ended up lying next to him and falling asleep just to keep him in his bed otherwise he has these urges to go into the bathroom with a routine of  walking in - standing on the lavatory, opening the cupboard above the lavatory (the key for this has been thrown on the roof so it's rather redundant at the moment not containing much as it was there to hide toothpaste etc from him).   He then proceeds to go into the shower then hops into the bath where he kneels down and does what looks like a prayer to Allah (he doesn't go in the bath usually.  In fact he has a fear of the bath when it's full with water but for some reason this way of getting in is different).  He then sort of turns the light on and off.  Eventually this broke the light a few weeks back so the children have been having 'spa baths' by candlelight which sold it to Holly for a bit but the novelty soon wore off so finally an electrician came to fix it this week.

Andrew the electrician fixed other lights too which had broken and said he had another household he goes to as there's a boy like Joel who does similar things to their lights too.  He was so nice he even managed to fix a hook which fell off when he hung his coat up.  My word I need people like that around.  He will be back no doubt!

In the mean time I'm looking for a handy man as I need someone (a knight in white shining armour) to come and rescue all the electric toothbrushes from the roof !  Including all the keys for the windows and the key for the cupboard in the bathroom which I was supposed to have as a security cupboard as a deterrent from Joel!  The last handy man I had was so peeved off with these fiddly locks I gave him to put on my cupboards in the kitchen which took him double the time he thought he'd be that I've not seen him for dust .  I also had another handy man/gardener who spent most of the time in the garden as he didn't really want to do the handy man jobs.  Well you can't force these people can you?  I would love to have some sort of power over them but all I can offer is cups of tea and a look of gratitude from their mortal presence forever indebted to them for their DIY skills.  

I once had a Romanian au pair who was male (I have never had a male au pair again nor an au pair since for that matter so you probably know where this is going).  Anyway I thought I could have a ready made DIY man and gardener around.  Little did I know the guy hadn't stepped on grass nor seen flora and fauna in all his life and looked like he hadn't seen light when he arrived in the country.  He managed to actually break the mower by mowing over the electrical cord and he didn't know the first thing about changing a light bulb so I wasn't impressed at all.  He also threw up in my car on  the way down to Cornwall and blamed it on my DRIVING!   I very nearly ditched him on the road as I had him PLUS three kids which meant I now had four kids to look after.  Anyway that's a whole other story and I hope I don't have too many disaster stories like that again.

The main thing about autism are all the things we take for granted in a house like shutting doors.  I now have to lock every door like a cell block officer.  At the end of the night I  have to secure the doors as escape artist Joel will be onto them if not. Once he even managed to open the front and back doors very early one morning and we found him on the trampoline waking up half the neighbourhood.

Today I had my lovely neighbour over who babysat for sleeping two year old Max while I picked Holly up from school.  I shot back to meet Joel off the taxi who in turn ran upstairs and proceeded to do his bathroom routine and came down to hand me the bath plug.  Thanks Joel.  I wish he would solve the latest mathematical problem or make himself into one of these 'gifted' autism people for a change.  Don't get me wrong.   I do think he's gifted in some area, but just not sure what it is yet.  I don't think he's going to be the next Einstein by any stretch of the imagination, but I'm hoping he might surprise us with something.  Why else would he be here?

The Highs and lows this week...

I'll start with the lows.  Things kicked off the usual  busy Monday afternoon after school with a household of three children but all seemed relatively stable.  Until 4pm when Holly's piano teacher knocked at the door.  I opened it to the nice calm lady who was looked straight past me to something else to which she jumped appearing slightly alarmed with a 'hello' over to Joel standing by the bathroom totally naked apart from his school top on with what only can be described as a beacon appearing below which also alarmed me!  She ushered herself into the piano room and I ran over to Joel and asked him to put on his trousers and pants.  I reminded myself to put it in the communication book to his school for Joel to learn about putting his trousers on after going to the lavatory.  Phew!  He also does not know how to use the lavatory paper yet which will be another task to master with the help of his school.  I am explaining this because I know it's taken for granted with a child of this age but with Joel everything has to be taught and broken down into steps so that he can learn this task.

He's not getting any smaller and he has no awareness like a typical nine year old boy about being naked.  So after swimming on Tuesday he took off his trunks and showered in the lady's shower and I somehow thought this was not appropriate any more but inside I'm thinking he thinks it's totally normal and I left it .   I will have to think about him showering in the mens from now on but then he'd be alone and I would be waiting for him wondering what he was doing.  See this is just one thought of a parent with a child with autism.  It's just an additional worry which I will have to cross when I get to it and in the mean time not get too alarmed about Joel growing up.

The highs are that he saw his Granny Maggie this week and gave her an almightly welcome and we went to his wonderful school to see the opening of a bike area and senior school play ground.  It's amazing and all funded through a charity called the Wooden Spoon Society.  Please look at the website about the new senior section at Joel's school which currently goes up to age 16 :- http://www.stepbystepschool.org.uk/news.html
I was at the AGM yesterday for Joel's school and they can only cover the running costs and the staff costs.  There are 37 staff to 22 children. The staff are not paid a fortune and so the school relies heavily on charitable trusts therefore things like the school bus and the playground are all from grants and charities.  There is a new bus which cost £17,000 which was through a parent who managed to get a grant through a client - how amazing is that!

Step by Step are currently looking for funds for two interactive whiteboards totalling £3000 so if you're thinking of raising money or doing a marathon please think of this little school stuck on the East Sussex borders in a converted dairy farm and think of these amazing tutors working so hard to help these autistic children. 

There are amazing people out there who want to help. 
A plaque was put up and commemorated yesterday for Steve Cairns who sadly passed away in April 2012. He was one of Step by Step's original heroes, raising money over the years through the East Grinstead Rugby Football Club Sunshine Sevens to help the school. The staff will be forever in debt to his commitment and generosity towards the school. An amazing man who is sorely missed.  He basically was driving past the school one day in it's early days (it's now 10 years old) and saw the sign and went in and asked what was needed.  He raised thousands for the school and raised the money for the first school bus. 

I had an idea at the AGM to set up a parent fundraising party called Friends of Step by Step so we can raise money for the school and have just spoken to a parent friend who loved the idea and is calling round to see if we can meet to discuss how we can raise money for two interactive whiteboards.  I'm thinking of asking a curry house in Lingfield who have supported the local Young Epilepsy school and hoping they may support Step by Step.  When I last went it was only £10 for a delicious curry and this went to the school and now I have something to focus on am going to try to organise this!  It's people like Steve Cairns who inspire me and there are more on the website too but thank you Steve for thinking of these children like my boy Joel and I know your legacy will last for years to come.

Autism Angels...thank you and Happy Christmas

I have met many angels along the way since discovering Joel has autism.   Not meaning to sound too sentimental but this life I've ended up having has given me an opportunity to  meet these amazing people who work with children with autism .  They have come along at times when  I've lost faith in humanity.  They have helped restore this faith and given us hope.   I  wanted to thank just a few...

Hazel Whittaker who has been an amazing carer for Joel from Crossroads Care taken after Joel's First Holy Communion in Spring 2012

1) ABA tutors from our lovely Australian ABA Tutor Michelle Wilkin who had the patience of a Saint and always a smile and positive attitude to his current day tutors at Step by Step school for children with autism.  All Joel's carers too especially Hazel who took Joel through his First Holy Communion sessions and helped take him to the Beavers.  Lyn Chadwick needs a mention too from Aiming High East Sussex when we arrived in the country she gave us an afternoon out while taking Joel out usually on a local train ride!  Izzy Zeigler who started Joel off in the oxygen tank and helped with the exercises and picking up Joel from school when he first started at Step by Step before I got transport for Joel.

Michelle Wilkin - Joel's ABA Therapist in Sydney



Joel in our pool in Freshwater, Sydney with Michelle and Holly



Sinead who takes Joel to Cubs and helps with the Scotson therapy exercises.



2) Felicity Ellacombe at the Fred Foundation based in Fulham London www.thefredfoundation.org who came to the rescue and funded Joel for a year and a half at Step By Step School when we were losing our battle with the East Sussex Local Authority. 
She believed in our case and that we would get the funding once we had enough evidence of Joel's progress and finally this year once we had moved to West Sussex the Local Authority agreed to fund Joel for the next two years and then with a review.  Without Felicity's charity which is so specialist Joel would have regressed even further into his autism and wouldn't be learning but he's got that chance now.  They really do need the funding now more than ever so if you're thinking of sponsoring any charity please consider them. If I'd asked now they would not have been able to pay for Joel's fees as they are helping so many families like mine so please support them even if it's going to one of their events - look on their website please!

3)   Matthew and Alison Pope - who told us about FRED!  They are amazing parents who have helped give us advice about how to get autism related services as they are a bit further ahead than us and have a child with autism who's about five years older than Joel.  They freely gave us advice about funding for Joel's school through the Fred Foundation who had also helped this family.  I told you Fred were amazing...

4) All my friends who supported me when we discovered Joel had autism in Australia; Marianne, Sophie, Vicks for babysitting Holly especially when I had all the Joel related meetings, Jael, Helena and many more friends who helped me along the way once I was on a mission to get going with Joel's therapies.  All my friends in England new and old who have given me support and laughs along the way. 

5) Jeremy Marris from The Tree of Hope http://www.treeofhope.org.uk/ who has enabled Joel to have oxygen therapy and for carers and ourselves to learn the Scotson technique therapy for him from the Advance Centre in East Grinstead.  Without this charity we wouldn't have been able to fund this and Joel is benefiting hugely from this therapy and requests the exercises and it helps him sleep and YAWN!  Lots of children don't yawn much as they don't get enough oxygen to their brains so this amazed me that this simple technique can help with this and generally with calming and even talking.  Joel requested the exercises be on his 'back' yesterday and even though you may think saying 'back' is nothing to blink at believe me for a child with significant speech delay and severe autism this is HUGE and gives me and his carers hope!

6) Joel's local hairdresser Emma at The Wright Studio in East Grinstead for her patience and perseverance!  Joel now can sit happily in the hairdressers (with his ipad) while he gets his hair cut.  A year ago he wouldn't even let you touch his hair let alone cut it!  Hoorah for willing hairdressers all round the world who cut autistic children's hair they are unsung angels!!

7) David Urani, Educational Psychologist.  Without your letter regarding Joel's educational needs we wouldn't have got the funding from Fred and perhaps from the Local Authority.  I know you help countless other families too.  Gem.  And Australian too! 

8) Tasha Figg from The Springboard Project www.springboardproject.com where Joel has spent many hours on a Saturday morning having lots of fun with you and your helpers especially Tom who has gone to Uni now.  For taking Joel to the cinema for the first time this October half term and him actually sitting for the whole film with one 'toilet' break.  For Joel this is amazing.  Springboard supports families in the holidays too offering days out.  Joel went to Chessington Park and is going to a pantomime too this Christmas with Springboard.  Hoorah for Tasha for her smile, positive attitude and for giving us a break knowing Joel is having fun.

Joel with Tasha Figg at Grasshoppers in Crawley where he's loving the messy sensory play.


9) Lesley Schatzberger at Jessies Fund www.jessiesfund.org.uk/ .  Joel had music therapy through Jessies Fund with Jo Brazier and he really benefited from this becoming more and more compliant at the end of the funding when he first started he would hardly stay in the room.  Music is so important to Joel and without this charity and others like it so many children with disabilities wouldn't benefit from this which can bring on speech and help them with communication and expressing themselves. 

10) My family and Jake's family especially Granny Maggie, Grandpa Lawrence and Granny Mary and Joel's Aunts for all your help and support.  For giving Jake and I a break and looking after the kids.  Not forgetting Uncle Harry for his love and support and Uncle Gavin for being the new Wicked Uncle.  (I had a Wicked Uncle James who had a twisted sense of humour who hung me off a Cornish cliff and chased us on the cliffs and gave us lots of fun with lots of fear at the same time if you get my drift!).

 

Sarah Merrifield at Tablehurst Farm with Holly and Joel also rides on Liberty

 

 

11) Sarah Merrifield - Joel's riding teacher at Tablehurst Farm who takes Joel most Saturdays.  For her patience and care.  Joel was very fidgety to begin with a year ago on Liberty one of her beautiful Haslings and now he is calm and sits beautifully. 

12) Di Churchill the organiser of  Activenture and all the young volunteers who make it possible  http://www.londonyouth.org.uk/inspiring-young-people/activenture/about-activenture .  Joel had a wonderful activity week in the Summer in East Sussex and hope it's the first of many with Activenture.  It's the only group for disabled children who have young volunteers from age 13 who are one on one with the disabled child so that means they also share a dorm with the disabled children and it's often their first experience with kids with disabilities so it's a steep learning kerb for them in a week!  One young person looking shattered said to me 'they're having fun but we're exhausted!'...try having that 24 hours a day 365 days a year!

13) All the volunteers in Lourdes who helped out with our family this year including Jane, John, Pip, Tony, Angela and many more...

Volunteer Helpers Jane and John looking after Joel on his 9th birthday in Lourdes with Joel and me in the City of the Poor, Lourdes 31 July 2012

14) Lianne and the staff at High Trees where Joel stays a few nights a week.  I was so grateful this came along in October so that we could have a day once a fortnight to spend with my other two children.   I recently read an article about a woman who regretted not spending time with the two siblings of her disabled daughter and it was sad to read this so I try and give time out for them too.


The list goes on and on.  I just wanted to thank a few autism angels and will be adding to the list as I go along.  We need people like you and we love you all!  Thank you and Happy Christmas to you and all the other incredible people who dedicate their lives to helping children like Joely.