Wednesday, 12 December 2012

12/12 And breathe.....Christmas will still happen

Just taking a moment with a cup of tea, and deciding whether a Kit Kat is an indulgence too far.  It is dark chocolate, and chocolate comes from cocoa beans, beans is one of your 'five a day', its all sounding a healthy option now ;)

I am having such a busy week, and when I am asked 'you ready for Christmas?' my tummy turns as I realise I haven't even bought cards, let alone written them, worked out last posting days, and don't even ask me about presents.  This time of year reminds me how much extra time you need to find from nowhere.  We did dig out the Christmas decorations, and made a partial start.  I always blame the chaotic decorations and our house looks more 1970's scruffy, than a co-ordinated display, on the fact the kids did it.  Well secrets out, Dave and I try, stand back and look at it, then say, never mind, just tell them Alex had a go.  Though I had a gorgeous moment this week, when I left a box of tree ornaments in the living room.  Alex was very quiet and when I sneaked a peek, he had put them all on the tree.  Obviously all within  8 inches of each other, but I was so proud of him, I think I may leave it just as it is.  Dave asked me last night if anyone else had bird puppets on their tree, parrots, pink flamingos and owls etc. Can't say I have seen that particular trend, but I persuaded him birds belonged in trees. 

So Christmas is slowly coming together.  My feeling is my lack of planning won't disrupt proceedings.  Christmas day lunch is planned.  As we have done many times since we have had the kids, we are having turkey and cranberry sandwiches.  Yes, you read that right.   It would not be right, Dave and I sweating it out in the kitchen to make a fine three course meal, that the kids would neither eat, sit with us or play any part in.  The allure of new toys and great TV is too much to compete with.  So we sack off tradition, play with the kids and it all works a lot better.  Calm, quiet, and with any luck, successful.

We also had the airing of the Granada Reports news interview last night.  I had no prior notice, and thankfully my mother-in-law was on the ball and called us.  Alex was so excited to see us all on TV, he kept saying 'again' to get me to rewind it.  I haven't heard him giggle so much in ages.   It was 1.5 minutes, condensed from 1.5 hours of filming.  That's serious editing.  I was pleased with it though, they were mostly accurate (I liked the suggestion I may walk Alex to school, when it is a half hour drive :)), but more importantly it did show the main way she helps us.  Just another notch in autism and support dogs awareness.  Every little helps.

We are in the middle of a school turbulence with Tom.  He had his annual statement review two weeks ago, and without wanting to go into details we had concerns his current school was the right place for him.  So for the last two weeks I have been visiting other local schools, and weighing up our options.  Another reason for the permanent knot in my tummy.  It feels a bleak prospect whichever option we choose as there are problems where we are, but moving him for the second time in two years, into an unknown situation is equally concerning.  Tomorrow I am chatting with a head of a good local school to see if they can meet his needs within the class structure.  If not, then it is back to making Plan A work. So often Tom worries us more than Alex.  I know he has less of a disability, but that makes him complex to integrate into a mainstream world, and we will always face issues of trying to work out how best to support him.  Anyway, I keep pushing on, and hope in time the right solution will present itself.  The really great news is we have found out we don't need to go through appeals or tribunal to resolve, so that is a battleground I can avoid for now.  I just live with the worry and pressure of making the right decision, knowing not everyone agrees, but hoping I may know Tom better, and see it from his perspective.  Time will tell.

I also started writing a book two weeks ago.  Just a fictional novel.  Its based on a character with Asperger's Syndrome, and her journey starting out in the world of work, and forming relationships, as she stumbles upon some criminal evidence that turns her quiet world upside down. Writing a first book is a bit like if I got a canvas and oil paints, and had a go at my first painting, I am certain it will be an amateurish effort, but I fancy a stab at writing, and I have just loved the process of sitting down and typing.  It feels like when I play the piano, your mind drifts, and it has an almost meditative state.  And my piano playing is something best not shared, and very rusty.  We'll see how it comes together.  If my nearest and dearest critics give it a pass, I may share it one day!

So thats it, tea break over, and back to the jobs list.

Tuesday, 11 December 2012

11/12 Check it out - ITV Premier

I hope this works..this is the news article shown tonight on Granada Reports.

video

Failing that link, there is this one to You Tube





Tuesday, 4 December 2012

4/12 Christmas present ideas for autism

Schleich Animals - awesome collection of high
quality animals which are solid and technically accurate, and will stand up easily.
Alex adores his collection, I just wish Lucie didn't chew them!!
It just occurred to me it is Christmas in three weeks.  Our tree is still hidden deep in the attic, and my list of present buying hasn't even been written, let alone made any headway.  And I was thinking how hard some people are to buy for, and you rack your brain to think of something they may like.  And that's just for a regular person.  But it is even harder to know what to buy someone when they have a disability like autism, where you do not know what may capture their interest, or even be safe and age appropriate.  I was feeling a little sad at Alex's birthday this year, when I realised I was still picking out toys in the baby aisle which I thought he would like.  And if your child is given an inappropriate present that may be for 6+ on the box, but your child has no chance of engaging with, it leaves you with a deep sense of sorrow.  But fear not!  If you are thinking of what you can buy for a child with additional needs, I thought I would share some present ideas that I have found over the years that may work a treat.

Of course I have no connection to any of these companies or a personal interest in the items I recommend, but sharing ideas may give some inspiration.  And please don't take my word for it, each child is different, so please ensure these items would be safe and appropriate to their specific needs.  My criteria tends to be I need something robust that will be thrown, eaten, drooled on and stomped on, so that rules out an oregami swan craft kit :) Also - a note on where to buy....I live on the Internet, as I can never get to the shops, and I don't want to single out one distributor, it may be best to find the item in your search engine, and check out stockists.  Something to watch for  - I find several things available in regular gift and toy shops that are sold elsewhere for much more as soon as they are labelled 'Special Needs', so be savvy, and shop around. I have seen the same toy sold for £2 and £15, just because the latter was sold as an autistic sensory aid.  And of course this is just a taster to get your brain cells juiced up.  But I'd be happy to get any of these under my tree this year :) (BTW - to insert these images like this was a nightmare, and it may mean it goes haywire if you are viewing on a different PC setting to me - but I am tired, and my eyes are red from trying to read HTML, and my brain is straying to thoughts of the lovely Cumbrian sausages I am about to have for tea - so I give up - it is what it is and hope you are wearing glasses!)

So here are some cool presents my kids have loved:

Animatronic Toys - Expensive but great
for older kids.  Our favourite was Bigfoot.  
Race track - we love this Rory one as it is a solid track that stays together even when stood on.  The kids love anything going round and round in repeated circles


Chrome tangle - this is one I bought for an adult,
a grown up version of a great tactile toy.
A regular tangle - I have loads, to distract stressed boys, in school, home, car, just great
I loved this gift - when you correctly pair the right
animal it makes its sound.Solid, reliable and well made.

A Knot Ball - great stocking filler,
and keeps agitated hands busy

A personal favourite, as it works for all the family
Marble Run Extreme. Marble Runs are great
if they wont eat the marbles. They love
the repetitive action, but these more complex versions
are for adult set up, and supervised childs play, but hours of fun!!

Alex would have one of these in every room and the car.
A puffer ball, cheap brilliant, squishy and great!

Love these squish balls that are great for developing fine motor skills and building up hand strength.  Be warned - they can burst if too roughly treated.

For kids who jump, and are active a tactile ball to sit
on is a great selection, also see peanut balls, for
perfect balance and sensory feedback



Weighted blankets are great for kids who like deep
pressure. They must be specially ordered for the childs
weight and size for safety.   I cheated and made mine, but it was an epic sewing job!
Bubble tubes are magical. We got ours for £40, and got toy fish to go inside.  Years of pleasure.

Aquadraw is great for kids who mess
as you are only dealing with water - win win!

Puppets - any, finger puppets, hand puppets or even
signing puppets are a great investment, especially on
car journeys


Books - hardbacks are great as they get a battering.
My favourite are the Scanimation series.
DVD's are a hit, animation mostly,our tops are
Winnie the Pooh, Dr Seuss, Sesame Street
 - oo tonnes of choice!
Feeling rich?!  Then any gadget is a
winner,  but I strongly advise a
heavy duty protection case




Ipad Apps/itunes voucher.Apps open a
world of options up, for fun and learning.
Our best buy is the
Monster at the End of the Book

Saturday, 1 December 2012

1/12 TV Premier for Lucie!

2nd Update 7/12 :) - Still not been edited, so still no news on when/if it will air, will keep you posted.
UPDATE  = Filming completed today (Monday 3/12) but will not be aired today, will update when I know the day...


Just a little news.  Our regional news programme on ITV, Granada Reports, have contacted me to ask if they can film Alex & Lucie for their show on Monday, to be aired at around 6pm.  Its not set in stone, as any news programme can change right up till the last minute, but there is a chance it will happen, so if you are in the NorthWest you may be able to see us.  I'll try and work out some way to show it on here after, but that may be a technological leap too far for me!

And just in case anyone thought all Lucie does is work - here is a bit of stuff and nonsense video of her enjoying herself with her friends this week :)  Think she and Ben are a bit soft on each other....

Tuesday, 27 November 2012

27/11 MadMen Ball Autism, Dogs and Celebs!

So Sunday.  The big night is looming.  Manchester Hilton MadMen Charity Ball hosted by the Hearts and Minds Charity.  Support Dogs have a keen interest as the charity focusses on helping autistic kids, as does the Autism Assistance dogs programme, so there are good opportunities to find a mutually beneficial sharing of ideas.  So we - we being mostly Lucie - but Dave and I were asked as she would look pretty silly and lonely arriving on her own - were asked by Support Dogs to come along and fly the flag for Autism Assistance Support Dogs.  Oh yes.  This is me in my element.  Two things I am mad passionate about - Support Dogs and Autism - under one roof.  Bring it on!

Job One - Theme is Mad Men which means zip nada to me.  No I haven't seen the series.  So a quick Google, and apparently I am expected to dress in a 50's/60's theme.  Ok.  Erm... first choice, a nice new diamante bling collar for Lucie.  Very kitsch.  That's one of us sorted.  Dave, new bow tie, in a retro theme, then me. Well dressing up, in fact dresses alone a bit dodgy as I am more a jeans and fleece girl with comfortable trainers, so a safe option is black dress, red heels and pearl - oo mama - jewellry.  The best bit was my really smashing friend/hairdresser/autism parent did an amazing job on my hair in a real Audrey Hepburn style on a Sunday, as a treat for me.  Thanks Sam! Just wish I had a photo of how beautiful the back looked...

So on to our night.  We arrived to meet our friends from Support Dogs. A great mix of people, including Michelle, Lucie's trainer, and two other dogs, Jasper another Autism Assistance dog, and Dougie a Seizure Alert Dog.  Dougie is a great addition to the evening as a third of children with classic autism have epilepsy.  These are truly remarkable dogs who smell/detect a seizure before it happens and alert the owner to take medication.  Just amazing. I still can't get my head round it.  These dogs literally can save lives. Respect.

And so we swan through the Hilton foyer, with photographers around trying to snap away at celebrities, and as VIP guests we are fast tracked up to the VIP reception at Cloud 23 cocktail bar.  Greeted with a swish (and strong) martini we start to mingle.  The bar is on the 23rd floor with a  perspex section of see through floor to the street below.  Very weird.  I walked Lucie on to it.  She was not phased at all.  That's my girl!  And so now each person we met got a quick intro into how great Lucie is, and what an awesome change dogs can make to the lives of children with autism. 

We had official photos taken with celebrities, Paul Scholes, Melanie Sykes and Keith Duffy, as well as a cyclist from the Olympics - no idea who!  And then on to the official event.  It was very swish and professional.  Great entertainment, huge turnout and some serious money present.  As a fundraiser they had done an amazing job.  The raffle was out of our league, with thousands of pounds bid on each item.  Then Keith Duffy spoke.  He is from Boyzone pop group, and been in Coronation Street.  But all that was put aside as he spoke as a parent.  He talked of the journey with his autistic daughter.  So emotional.  I could not hold back the tears.  I was sitting by Melanie Sykes (TV celeb) but more importantly also a parent of an autistic boy, who was also losing the fight with tears listening to Keith.  It was a lovely moment to share with them, not for who they are and what they do, but just as parents all struggling to come to terms with the same journey.  Celebrities do nothing for me but a parent of an autistic child grabs my attention, and you feel their connection.  Keith got a well deserved standing ovation.

I was delighted to get the chance to talk with more celebrities afterwards and introduce them to Lucie.  She was cuddled and mauled by Melanie, Kym Marsh, stars from Coronation Street who I had no chance in recognising, and we had a nice hello chat with Keith Duffy(too too gorgeous).  Paul Scholes was more of a quick snap after midnight, but I think he is more meek than most. 

So we approached loads of people and did our thing.  I think Dave loved the women who came and swooned over Lucie.  I tried to give him space to enjoy it while it lasted!  It was a hugely succesful night, and I think the profile of Autism Dogs was raised to another level.  Fantastic.

We have truly awful photos of the night.  No excuses,  just bad lighting, bad posing, scary dog eyes (caption competitions required! - check out Lucie with one red one green eye :)) -  bad organisation and some strong martinis to blame.  But here are a few with Keith Duffy, Melanie Sykes, Kym Marsh, Paul Scholes, and yes - you guessed it that bloke from Corrie!  But really the photos do not do the night justice,  it has great memories for me, and so so proud of Lucie!  What a star :)









Monday, 26 November 2012

26/11 Graduation and my meltdowns :)

This weekend has been a whirlwind of action.  Saturday was the big graduation day for me and Lucie.  I approached it with excitement and trepidation, as it was both a celebration and a logistical nightmare :) The event was in a venue near Sheffield which involved sitting in a room for several hours with around 200 people, and dozens of assistance dogs.  This in itself posed some challenges as to how we were going to make the journey to Sheffield and back, and keep the kids seated in a room full of people and dogs, but with some imaginative planning, we were off.  First hurdle was to get Tom through the journey without being car sick, with the exceptionally nice touch of having to cross the Penines over the Snake Pass.  The clue is in the name:)  Some travel sickness pills, and focussing him and we all arrived in one piece.

In we go armed with tonnes of treats to help Lucie redirect from her canine friends, and an armful of things to keep the kids quiet, toys, books and the ultimate last resort - the ipad.  We all settled, and I have to say the day was wonderful.  We were surprised to see our picture on a banner when we walked in which Tom thought was very funny....and we were also greeted by Murdoch, the Support Dogs mascot much to the pleasure of the kids.

Alex was attached to Lucie most of the time, and in the odd moments we gave Lucie a break, Alex bolted off to cause chaos, so she really had been helping.  I can't imagine doing the day without her.  Lucie was fabulous, not only taking it all in her stride, but also because it became like a 'Whose Who' of Lucie's life. We had a really lovely time as Lucies Guide Dog puppy walker, Ruth, who had taken care of Lucie in her first year, had made the journey all the way from Worcester with her husband to share Lucie's special day. And it got better when we also met Lucie's foster families who she stayed with while training at support dogs. It was so wonderful to finally meet them and be able to say thank you for all their efforts in helping a dog like Lucie make her way into our family.  Quite emotional.  Lucie couldn't stop wagging her tail, as person after person came to say hello who she hadn't seen in ages.  She must have thought all her Christmas's had come at once.

And so the time came for Lucie and I to collect our certificate and rosette.  To my horror the first thing I realised was the lady presenting the awards was the examiner we had two weeks ago when I had the day from hell when Lucie was unwell. I was so embarrassed to see her again after she had seen me in such a state on the test. Ah well, just smile and keep going!  As we were called forward, I took Alex with me attached to Lucie, and Tom came too.  We did okay in front of 200 people until we went to take our seat. 

Alex was walking holding on to his handle when he caught sight of a lady with her iphone on the floor.  With no notice he launched at her taking me and Lucie with him.  He grabbed the phone (a little fun obsession he has is stealing android phones - yep - thats my boy) and bolted away.   I am now on the floor in front of everyone holding on to the strap between Alex and Lucie.  Lucie did as trained and stood steady while I could sort out Alex. Dave and Michelle, Lucie's trainer, dived in to help.  We untangled, regrouped and scrambled back to our seats.  Just dying inside, all I could think is why can one day not go smoothly.  We had to have a drama in front of all those people.  I cried a few tears just from the stress and tirednes of it all.  But I did realise that proved in spectacular unplanned fashion why we have an assistance dog, so it looked like a proper demonstration!  Ah well, take us as we are...

And so back home.  Snake pass again, and Dave and I were feeling quite smug we had brought Tom home without being ill...hah!  Speaking too early.....we unpacked the car, and Lucie walked straight through the door and vomitted spectacularly.  It seems the snake pass does not agree with dogs.  Whilst she looked fine after, that was a nice tidy up job.  I turned around during this to see Alex launch the laptop and kill it completely.  No working hard drive.  RIP PC.  Enough stress?  No - Dave meanwhile was unpacking our stuff from the day including some olive oils we had won in the raffle.  One slipped, smashed glass and oil everywhere....no time to register that, as I piled the kids and dog into the living room while said glass was removed. Tom went into total meltdown as he soon realised he had left behind his beloved Match Attack collection cards and folder in Sheffield. And all this within ten minutes.  Not good.  So, Lucie all cleaned up and recovered from travel blues, olive oil wiped up, PC mourned and Alex quickly diverted to ipad (not helped at the realisation a presentation due on Monday and two days work now lost and not backed up was annihilated with laptop launch)...and Dave was dispatched to Asda to buy said replacement Match Attack cards. Yes I will buy my way out once in a while.  Shortcuts are sometimes needed for sanity.

And no time to rest as Sunday is the Hearts and Minds Charity MadMen Ball.  Dave's parents were kindly babysitting, so the house needed at the minimum some attention to look presentable.  I am not houseproud but realise when my friends inhale at the state of the place, then maybe my priorities are getting squiffy.  So a quick scoot round the house, then finally we crashed in front of the TV.  Graduation day complete, tomorrow is another day, but for now....you guessed it...wine!

Friday, 23 November 2012

22/11 Lessons learned - practical and sensible!!

And now for the serious stuff :) And this picture is only me being mischievous cause if you can't have a giggle at your kids expense when they are sleeping - where is the fun in it?  Alex, one day you can get your own back at me....

This bit may only be relevant to some, but if one person finds a helpful resource then its worth sharing.....If you survived reading the last post on emotional milestones, then here is the next chapter.  This time I have a fine glass of red wine in hand while writing, so it all flows a lot smoother!  I was talking about things I have learned over the years that have helped me be a better parent.  There is the emotional journey, but there are also strategies, services, and solutions that can quite simply make life better.  Now this is a tricky area, as I have stumbled upon some wonderful services along the way, which while I am very happy to share, is very specific to each area, town, county or country.  But please don't be put off by that.  I have also realised, every area is different, and they all have different things, so it should never be a case of 'I wish we had that'....you may have something different, or more importantly - do something about getting the service you need.  I am really motivated by a special woman in Scotland who was the first to set about getting an autism assistance dog.  She heard about them in the US and Canada, and said she thought it could help her son.  And after research revealed no such service was provided in the UK, she approached a charity, and made it happen.  Services and solutions do not have to be established, anything in your imagination can happen.  But plenty is out there, and these are things both practical and useful that I have discovered over the last five years that worked for us, and I wish every parent knew about :

National Autistic Society - (www.autism.org.uk) is the singular best online resource for Autism.  Now there are too many other good charities to list here, and for other conditions, there will be their own dedicated charity that works in the same way.  I have a lot of time for the NAS.  Their website is a great first stop shop for anyone with questions, for those on the spectrum, parents, relatives, teachers, professionals.  They also provide a full reading list of books that you can go on to research further.  Our particular benefit has come from the courses they run.  My husband and I attended a 12 week programme for parents with newly diagnosed children called 'Early Bird' which gave us information and strategies to cope.  We followed this up with the excellent Help! courses.  Help! 1 gives a generic overview, and Help! 2 are specific courses on topics such as Sensory needs, Toileting, Siblings, and Anger Management.  We were so empowered by the information and support from the NAS, that Dave ran the London Marathon, raising over £4000 to help other parents benefit in the way we did.  You can access these courses by self referral from their website, and receive information and further resources if you become a member.  Other charities well worth being aware of are: Contact a Family, Scope, Cerebra and so on.

Local Charities - you cannot get by without the great work done in your community.  This comes in many shapes and forms but for us has been a particular charity called OJ's Care (www.ojscare.com) who meet the needs not only of those on the spectrum, but also their siblings and families.  There are great local groups who can be a lifeline, and worth giving them a try to see if they suit your needs.  Don't give up if you go to a local group and get your fingers burned.  I have had some very dodgy experiences over the years, but keep trying till you find groups that are your sort of people, and feel right.  And if you don't find the right group, think about setting it up :)

Hanen's More Than Words (www.hanen.org) - another course over 12 weeks Dave and I attended, giving invaluable information on communication.   This was on referral by our Speech & Language therapist, who run the courses.  This enabled us to understand how to communicate with our non verbal son and support his needs.

Portage (www.portage.org.uk) - I found out about this a little too late.  I am not sure how we got referred, but it happened late on for me, though I hear nothing but great reports from parents who had longer involvement.  Portage is a home visit educational service for pre school children with additional needs.  Learning through play - an awesome way to give your children the early intervention start they need.

Parent Partnership (www.parentpartnership.org.uk) This may be luck of the draw, but for us, our wonderful Parent Partnership officer (yes Russell, I mean you!) has guided us through the entangled web of educational support, helping us navigate how to get the right support our children need.  Their knowledge of the system is essential, as a PhD on the subject would still leave you lost.  These guys help with advice, form filling, looking at schools for additional needs, and attending key meetings with schools.

Carers Centres (www.carersuk.org) - the link is not quite accurate here, as every area has its own Carers Centre (just google your area), but the Carers UK website is also full of great information.  A Carers Centre is a perfect central point to get local information, support and be part of the network to help you and understand what services are out there for you, your children and young carers in the family.

Scope Face-to-Face scheme (www.scope.org.uk/face2face)  I have already talked about this on my blog, as it an intrinsic part of where I am now.  It is a scheme I have benefited from both as a user, and now as a volunteer befriender.  It is for me a scheme like no other that deals with the emotional journey as a parent.  All volunteers are parents of disabled children, who are paired with a parent who they befriend.  It is essentially a listening service, like a coffee and a chat with a friend, but that person is someone who understands your world.  I can't do it justice in a paragraph, but something I am very passionate about.

Support Dogs (www.support-dogs.org.uk)  Really?!  If I have to explain why this is so awesome you have not been reading this blog!!!  Life changing - enough said!!

Prescription Nappies available from 4 years old -  Frustratingly many parents are not told about this till much later. If your child is still in nappies, from 4 years old you can receive nappies on prescription.  We were referred via our specialist health visitor, but a doctor, health visitor or incontinence nurse should all point you in the right direction.  Its a tough service to access.  In our area they try and limit them to 4 per day!! Shocking as you can't buy them in shops, and often need more, so we still haven't worked out what you are supposed to do for the remaining part of the day - don't get me started on this subject.  Only today I was with two parents discussing their fight to get enough nappies for their teenage children - really?? Would you give a heart patient enough Warfarin for 3 weeks, and expect them to just make do for the last week??  Aarrggh...spot my bug bear :)

Education Statement and self referral - You can self refer if you have concerns over your child.  Parents are often lead to believe a professional has to refer.  Parents can ask for assessments in many situations.  You can also phone services like Educations Psychologists directly and speak to someone.  Don't be scared to go direct to the person you think you need, and if they need a referral, they will tell you how to get it.  You won't be offered things without digging deeper yourself.

Social Service Assessments - Every carer is entitled by law to a Carers Assessment by Social Services.  There are lots of barriers to access this service, but knowing your rights are imperative   This is not the same as a Core Assessment, which is an assessment of the person in need, to identify their core needs, and if these are being met.  There is no onus on social services to provide support unless the assessment identifies core needs that are not being met elsewhere in the community or by other services.  This is a complex area, but an  awesome resource is written by one of my personal heros, Luke Clements, a Professor of Law at Cardiff University who specialises in Disability Rights.  He has produced a free guide of Carer Rights which can be downloaded here www.lukeclements.co.uk/downloads/update1-jan2011.pdf   For me the information contained in this document is essential reading.

Welfare Rights - A fantastic service, but I am not sure if it exists in the form I knew it as.  We had an office where you made an appointment to see a Welfare Rights officer, and they impartially gave you advice and helped you with form filling for welfare needs.  We sought advice over mobility issues, and it gave me a very different perspective of how the 'system' works - its not logical!!  May be worth a Google if you are trying to navigate the world of Welfare support.

Carers Benefits - I don't like talking money, as this should not be about benefits, but the one thing I didn't know about was Carers Benefit.  As a Mum it would never have occurred to me to think about this, as I thought being a Mum was my job.  But I was given advice I should apply as a Carer as I could not work because of my sons needs, and therefore would not be eligible for state pension in years to come.  This benefit, whilst in no way could support us, does provide me with 'stamp' credit to receive state pension on retirement, as I will have no personal contributions.  It sounds odd, but as a carer, getting to mid sixties can be a scary time, when you realise your caring role has put you in a very dubious place financially.  This should guarantee a small state pension when the time comes.

CAMHS - Child and Adolescent Mental Health Services.  Some of you may be spitting out your tea at me daring to mention this service.  It is part of the NHS, and to say delivery is variable would be putting it mildly.    But we have had a very positive experience, and they are a great resource for courses, support and guidance.  We have used them to help with Anger Management programmes, behavioural challenges, sensory profiling (priceless!) and sleep issues.  If you can get access, and it works for you, having these people on your side can make a big difference.

Strategies - Great tools you could have in your kit box of tricks -
- Social Stories (course run by Speech & Language therapy, DVD also available),
- PECS (Picture Exchange Communication System),
- Visual timetables,
- Timers, (sand, traffic light systems etc). Lots of special needs versions available
- A DVD cartoon and film to help people with learning difficulties toilet train is Tom's Toilet Triumph made by the South Australian government.  I can't find a direct weblink, and my kind sister-in-law living there bought if for me, but a really great resource, hard to come by.
- Signing (Makaton or Signalong).  Signalong DVD's such as Singing Hands are a great start, as well as Makaton from Justin Fletcher and his Something Special series.
- Sensory Toys and equipment, can come from main suppliers like Rompa and Spacekraft
- 'Apps' the range of apps for ipads etc for learning is just unbelievable.  Google it, but our personal No.1 favourite app for the kids is the Sesame Street interactive book A Monster at the End of the Book :)
- Puppets - never underestimate the power of non direct communication.  Kids respond so well to a puppet, and many a time they not only entertain, but can have a response where direct communication fails.

I have to stop somewhere, but that is just a list of things we have used or benefited from.  I wish all parents were told about some of this stuff when they first find out there are issues, but we are all left to fend for ourselves and pick it up as we go.  So this is my clumsy attempt to write some of it down, and hopefully it may open a door somewhere.  A word of advice if I may be so bold.  As you are aware the internet has its garbage, and for a parent desperate for answers there are some websites that can lead you down misguided paths.  Don't believe everything you read, the quality of source material is essential.  There are no elixir potions to be found, miracles to believe in, no secrets to reveal, just reality.  So if anyone makes a claim that seems a little far reaching, it is probably worth taking it with a pinch of salt and giving it a wide berth.

I need to pay more attention to this Shiraz now.  Tomorrow is graduation day.  Excited and nervous.  Lucie will be grand, but how I will keep two children contained in a room for 5 hours is anyones guess. So I will be using some of those tools on my strategy list.  Ipad, sensory toys, support dog, valium....yep that should be a good start.

Tuesday, 20 November 2012

20/11 Reflection and lessons learned - emotional

Today I was trying to dig out an old photo of me as a child for my 40th birthday next year.  I got lost in the nostalgic process of browsing through pictures.  Inevitably, 98% were of my children from babies to toddlers.  That is when we seem to all go crazy with a camera, and in time we decide we might just rely on our memory.  I came across one photo of Alex which every time I see brings a huge smile to my face.  For no apparent reason this just captures his spirit for me.  It got me thinking about what has happened between when this photo was taken in May 2007, and now.  And then I started to wonder, what would I have liked to have known then that I know now.


Hindsight is great, and we can all look back and beat ourselves up about the things we got wrong, but the reality is we make the best decision with the information we had at the time.  So what have I learned over the last five years that I wish I knew back in May 2007?.... I decided to make a list of things I have picked up, both emotional and practical that has helped me be a better parent today.  I separate these lists as they are quite different.   Today I want to write about my emotional milestones, and then I will do the strategic practical things on a separate post.   So here we go, hang on for the ride, we are taking another leap into my obscure mind!

Love your child just the way they are - it may seem obvious but with a child with difficulties it is easy to always be looking for something else.  Love them not how you wanted them to be, how you you thought they could or should have been, but just for who they are.  It can be an easy trap to spend our lives trying to change/help/improve our children, but if we don't stop and love what is in front of us we are missing the journey.  These kids are not scientific experiments who constantly need fixing.  They are just kids who need to play, love, and be children.

It is what it is - accept the strangeness of autism without going crazy looking for answers.  We will never understand the autistic brain first hand, so some things we just have to look at and say 'I don't know why he does what he does, but he does, so lets move on'.  Answers don't always bring clarity.

Our children don't read textbooks - I have a whole bookshelf of dusty brand new never touched books on autism.  (Sorry to all those people who have so kindly thought of me and bought me a book on the subject). But for two reasons I rarely delve into books.  Firstly I have to be in the right emotional state to handle it, and so far I've not been there!!, and secondly most of the information you need is absolute logic and sitting right in front of you.  Of course there are tonnes of brilliant books that can give support, advice, guidance etc. and I have indulged in the bits I can handle, like on toilet training disabled children, or dietary advice, and there is a wealth of information if and when you can face it.  But our children are not reading these books.  They do not do a textbook version of autism, or behave like someone else's child.  They have their own unique brand, entwined with their own unique personality.  And now when my children don't fulfill the textbook version of autism, I remind myself, they haven't read the book yet on how they should be!!

Change happens at a different pace in our world.  Every new parent seems to go through a phase, me included, of desperately looking around for older children to get an idea of what your child may be like as they grow up.  This is both scary and self destructive, and heart warming and optimistic.  Change and improvements in our children can be at a very slow incremental pace, so we can forget in time where progress has been made, but looking at older children reminds us, it does come in time.  One key motivation for me to write this blog has been to keep a diary of events.  I sometimes feel we are going in ever decreasing circles, then I am reminded how things used to be and I realise change has happened but I was too close to notice it at the time.

Autism can be really cool!!  Don't get me wrong, I am of the school of thought if my children could have  a regular life without these challenges, then I would grab the chance with every limb.  But with disability sometimes I have felt (and especially they way we are assessed by Social Services, NHS etc) that it should all be negative.  Somehow I feel a pang of guilt when we are all happy, giggling and having wonderful experiences. Surely disability is synonymous with suffering, pain and anguish!  So now I can allow myself to enjoy, celebrate and realise happy families and disability can go hand in hand.  I have learned over the years to be fascinated by autism, the brain, our development, and there are times I look at my children, and think 'there is nothing wrong with you, but the world around you sucks!'

Its okay to hate your life.  As a parent (and a favourite conversation among my friends with special needs children is comparing silly things people say to us!) you are told to approach your life in a certain way.  Oo - I have a lovely long list of cliches we hear -, 'It takes a special person to have a child like yours', 'You must have been chosen for these special children', and so on.  Well while we all scrub our halos to shining - no - .  Anyone could have a child with additional needs, there is no recruitment process for it.  And it is a tough call.  So for me adapting to this new journey has been challenging, and I am not sure putting on a brave face and saying its all cool is being honest with yourself.  Why would you love a life where you have to watch your children struggle every day doing things everyone else takes for granted, where your relationship with your partner is so down on your list of priorities, as well as taking time to do things you enjoy?  Why is it I should like this life where I cannot work, earn money, create a stable secure future for my children.  No, I may not like it, but finally accepting it has been the beginning of change and a more positive outlook.  Realising its okay to not like what you have is the first step in working out a more productive relationship with your lifestyle, and finding good things within it.  It has been a big step to ditch the idea I must always smile and pretend everything is fine.  Now I admit it is not, it is quite liberating, and it is starting to feel a whole lot more fine!!  And if you understand that you must be in my world!!!!

Perspective - keep it real! This is singularly the biggest thing that keeps me going and gives me the strength to shake it all down and bounce back.  We are so obsessed in modern times with the here and now, but really amazing things are happening if we take time to stand back and gain perspective.  I often think - what would autism have been like 200 years ago?  What is it like to have a child with autism in a third world country?  How did parents cope with autism before TV's and computers were invented :) Even sitting in (not so sunny) Lancashire, it is easy to moan and gripe about services and support, but really we are blessed.  My children are spoilt with the help they receive.  And yes, there is always a long road ahead, and we should never give up pushing those barriers forward, but looking at our lives in perspective, we are doing a pretty grand job of things, and I often take time to appreciate what a great country I live in.

I heard a story once, and it goes round in my head.   I am sure it is an apocryphal tale, and been adapted with artistic license, but the key point remains clear for me.  It is a story of a bank robbery.  A bank manager was working in his office when three armed gunmen entered and told him to open the safe.  Scared beyond belief, he feared for his life.  In that moment trying to keep his composure and not get him or anyone else killed he had a realisation.  He realised at that moment in time he had a choice.  And his choice was that either this event would haunt him, fill him with fear and consume his life, or he would make the conscious decision that it would not.  He worked out it was his decision whether the traumatic events of the day would continue to have a negative impact.  He survived the robbery, and on being interviewed some time after was asked how he had managed to go back to work with what had happened.  And he answered, 'every day I wake up.  And I tell myself, today I have a choice.  I can choose today will be good, or I can choose to let those things get to me.  And it doesn't always work.  Some days things still get to me.  But in telling myself I always have a choice, consciously I am working at making things better until that becomes the habit.'

A strange tale you may think.  But so many mornings I wake up now, and just think - I can choose how I feel about today.  I can choose whether it gets the better of me, or whether I rise above it.  And like the bank manager, it doesn't always work, but if being aware that the responsibility of how I feel about events lies within me, then I am already empowered to have a better day.

And so that is my philosophical mind dump!!  Later I will be a whole lot less 'female brain', and will start talking practical sensible stuff (hah!! dream on) :)

Monday, 19 November 2012

19/11 Lancashire Evening Post article on Sparky

And just for those of you who know the wonderful work of the disability dogs, this is an article today in the Lancashire Evening Post on my friend, Elaine and her Support Dog, Sparky....who I had previously posted photos of on the blog.  A little mention of Lucie there too :)

http://www.lep.co.uk/news/local/sparky-the-dog-helps-owner-with-the-chores-1-5145092

Looking forward to the weekend for graduation and charity ball, and will try and get some photos.


Tuesday, 13 November 2012

13/11 Support Dogs 200th Partnership Article

I know - its like buses, you get two blogs in a month, then four come along in one week - what can I say?  Its been a busy doggy week!

Just to share that Support Dogs have put an article on their website which is celebrating Alex and Lucie being the 200th partnership to qualify from Support Dogs.  It is an outline of their story.   If you would like to read it, the direct link is

http://support-dogs.org.uk/page/104

Yesterday I also visited a primary school to do one of my Autism presentations for the teachers.  It was not about Lucie, but a more generic presentation I do about autism.  It was great to be in such an open minded school, where you already felt they got it.  Its always the way that the people who ask you to do a talk are already getting it right.  I left feeling good that some schools just naturally have the right approach.  They even asked if they could get their kids involved in some fundraising for Support Dogs - erm - yes!! That would be so cool.  So my brain is now in gear trying to think of fun ways to engage school children in learning about assistance dogs, whilst getting involved.  Any suggestions on a postcard please :)

Lucie was also signed off by the vet this morning.  He gave her a full health check and said she was in fine working order.  One MOT certificate issued.  Smashing.  So I have just taken her for a long walk with her black labrador friend, Ben, from the next street.  I have to get video of those two, they look like they are on a date the way they are together.  I feel like I am gatecrashing their walk.

And off to the library now to get a book on Iceland.  A crazy idea at the weekend left us booking a flight for next year for a couple of days in Iceland to celebrate my 40th.  Seeing the Northern Lights has always been an ambition, and the one thing I have learned is life is too short not to live it to the full.

Saturday, 10 November 2012

10/11 Photos, vet updates and news!

(and before you start reading -no- the news is not that I am pregnant - and neither will it ever be!!)

I'll keep this brief, as I have gone on far too much this week.  Just a few updates.
Firstly Lucie is looking grand after our vet fret.  It turns out it was a bacterial infection from a scratch or small wound, but the antibiotics are working a treat, and she looks her normal self.  Apparently the medication was two lots of antibiotics he gave her, so she is well and truly nuked, he erred on the side of caution as the infection was spreading fast and was unknown.  Anyway, hindsight is great, and all is calm.

We also took some pictures today for Support Dogs as the great news is we are the 200th partnership to graduate, and they are doing a press release to get some publicity, raise awareness and most of all hopefully funding! A couple of the pictures we took are:



And finally the next two big things coming up for us is our official Graduation with Support Dogs in Sheffield at the end of November, and the following day a real gem of an opportunity.  Support Dogs have invited me, Dave and Lucie to the Mad Men Ball in Manchester hosted by the Hearts and Minds charity.  It is an event focusing on autism, and Support Dogs want to work more closely with the charity developing the autism dogs programme.  So we are going to hopefully meet different people in the world of autism fundraising and promote Support Dogs work as part of that. Very excited, as two of my most passionate interests are brought together, and I get to get all dressed up for the night :) Will try and get some photos, as we will also be meeting Paul Scholes, Keith Duffy and Melanie Sykes. Its tough, but someone has to do it ;) 

p.s. and just because I am feeling mischievous....

Friday, 9 November 2012

9/11 Qualification test day and pure chaos

There are some days you don't drink enough.  Today was one.  How I managed to get from dawn to bedtime without a drop of medicinal nectar was the most amazing part, though in fairness, only intravenous wine would have worked as a relaxant, so probably tea was the best tonic.

I woke up at 7am in a hotel in Sheffield all raring to go for our big day, the qualification test which would make Lucie, Alex and I a fully qualified assistance partnership.  From the moment I met Lucie, she was a pro, and over the last six months, I have merely been trying to catch up with her standards.  She has been a pleasure to work with, and guided by our fantastic trainer Michelle, we have made great progress.  So the test was not so daunting, in fact I woke up thoroughly looking forward to it.  I took her for a walk first thing.  I wanted her to shake off any excess energy before the work began.  She was running around happily and freely.  The plan was to take her to Meadowhall Shopping Centre to have breakfast and a walk round, just to settle down, before we met the assessor and Michelle for the test at 10am.

I arrived and started walking around, noticing only that Lucie was hesitating more than usual when asked to sit, like at a lift.  I walked round a little more and sat on a bench, asked her to settle, and she outwardly refused.  Not like her at all.  She would automatically sit when we stop.  I did not push it, but was getting very worried.  I decided breakfast was not a priority and tried to gather my thoughts.  I tried to call Michelle to see if we could meet earlier to look at her, but it was so close to test time, and she was on her way, so I decided to walk to the meeting point, and work it out from there.

As I approached a lady walked up to me (holding a large plastic paddling pool).  We soon established she was the examiner, and asked if I could return the paddling pool to Support Dogs after the test, as she had borrowed it from them.  We decided to put it in my car.  This meant pre test, I would be walking around with the assessor.  A bit unnerving.  We got to a pelican crossing and again Lucie, having walked perfectly fine, refused to sit at the kerb.  The lady said she was ignoring my commands and aware of my stress. STRESS!! You have no idea, to coin a phrase, I was having kittens.  She told me to calm down, and on the way back told me there was nothing to worry about as I was only to walk past a dog and I wasn't being tested anyway.  Confused, we went to sit down and wait for Michelle.  Again Lucie refused to sit.

During our chat I told her how much Lucie had helped Alex, to which the penny dropped.  She had confused me as a member of staff from Support Dogs, and had no idea it was me she was testing.  For each test, another dog is brought along to do a part of the test called a 'walk by' whereby you check the dogs can remain focussed even when other dogs pass by.  I confirmed I was not that dog handler, and we were the ones doing the test, hence the stress.

As Michelle arrived I couldn't hold back the tears.  6 months of work, and a lot depending on us passing, all hung in the balance.  Michelle was shocked at my expression, and I just said, 'Please ask Lucie to sit'.  Michelle can get Lucie to do anything, this would confirm it was not to do with me, my commands or stress.  No response from Lucie.

We had a chat, and looked her over as best we all could in a shopping centre.  General consensus was we thought she must have pulled a muscle on her walk, which made it uncomfortable to sit, but was walking fine and wagging tail etc. So we decided to watch her walk, and see if we could see any issue.  Showing no discomfort we agreed to go ahead with the test, but not to ask her to sit at all.  The test is a public access to ensure Lucie's behaviour is right, and I am in total control.  It is not testing all her commands, or individual skills.  The examiner needs to know Lucie will never do anything like bark, jump up, steal food, run off etc.  So with sitting not imperative and easily checked later we proceeded.

I was beyond a wreck.  This should have been fun and straight forward, but now I am concerned and tense.  Lucie however was wonderful.  We were tested on a variety of skills such as;
- general obedience to listen to my commands walking her,
- her attentiveness and focus,
- reaction to a loud sudden noise to ensure she is not scared,
- dropped lead whereby I let her lead go and keep walking, ensuring she stands still waiting
- recall in a busy area, put in wait, and come when called with distractions around
- greetings by strangers, adults and children, all calm and controlled (her favourite bit!)
- taken away for a walk by examiner to test response to a stranger
- a dog walk by, very funny, as on the day we passed 3 guide dogs by chance, before the planned dog, so we had lots of testing there!
- dropped food, ensuring she leaves any food lying around
- walking through supermarket aisles to make sure no sniffing of food
- and so on....not even sure I know everything on the list!

At the end, I was a nervous wreck, but you could not meet a nicer lady than the assessor, and she was very reassuring.  Whilst we had to note the issues with sitting, Lucie was wonderful at her tasks, so we passed the test.  It wasn't the 'flying colours' I had hoped for, but I know she deserved it. I think the lady was surprised when I gave her a big hug when it was all over.  I liked her recommendation to go get a Gin & Tonic....my expression must have said it all.

Michelle and I returned to the office and decided to examine Lucie more closely.  We also had a few admin formalities to get through.  Lucie increasingly slowed down, and though we could still not see anything definite, we knew something was not right.  We decided the best course of action was to make an appointment for the vet for the same day, and just have any concerns checked out.  I was presented with Lucie's gorgeous new jacket, and after our goodbye's we set off back to Lancashire.

And so off to the vet.  Lucie, seemed more herself, still not sitting comfortably, but moving well and good natured. I was very relaxed taking her in, thinking this would all be procedural, and at most, a little first aid if needed.  I honestly expected the vet to tell me I was overreacting and it was something or nothing.  He immediately was very surprised, and said she had a skin infection which was coming on suddenly and aggressively. He did not recognise it but was very concerned and wanted to take swabs for lab testing.......What?!?!  Not what I was expecting.  He did say there was no way we would have known what it was to look at it, but that did not make me feel better.  More concerning was the level of medication he administered.  So I did was I was told, and he told me he needed to see her within 24 hours, and again twice more over the weeks....

I drove home very stressed and in tears that something more was wrong.  I went to pick up Tom from school.  He was in total meltdown and before I could get him or Lucie out the car he had gone into a rage, started hitting me and screaming uncontrollably.  He had grazed his knees and elbows again playing football, a dyspraxic hazard, and somehow it was all my fault.  I lost the plot trying to get him and Lucie inside. I phoned Dave on the point I couldn't take anymore and asked him to speak to Tom.  Dave worked his magic and negotiated with him, so I could get him calmer for a while.

In one quiet moment with Tom sitting on the floor, I don't know why but I suddenly decided to tell him he had Dyspraxia.  Tom has never known he has a diagnosis, but it seemed as good a time as any to try and share.  Not something I had ever thought about when and how.  A bit like when do you tell a child they are adopted, there is is no right way, sometimes you just have to go with your gut.  So after asking him if he had heard the word Dyspraxia, I explained it can make people more clumsy, fall over more, and make it harder to write etc.  He was so calm, and just added, it hurts when he writes.  He then told me he gets headaches every day.  On discussion, I asked if he wanted a little book to write down every time he hurt, so we could look for a pattern, and find out what was causing it.  He was very positive about this and also asked if he could also write down his emotions.  Just 5 minutes chat but what a result.  So I jumped in with both feet and asked him if he had heard of Aspergers.  He said no, so I explained he had it, and that was why he struggled with his emotions, and understanding some things.  He took it all very pragmatically, and so I left it at that for now.  Not sure it really sunk in but that was fine, it was just a start.  And sometimes the start is the hardest part.  So in a really mad day, maybe something very important happened in those few minutes.

I barely had time to think before Dave was home having collected Alex from Barnardos, and he had endured another very stressful day at work.  Following more issues, Tom descended into a second spectacular meltdown.  I also opened Alex's home/school diary to see they had more problems with his aggressive behaviour hitting and biting other kids at school.  Not something I could deal with in that ten minutes, so closed it before I had to think about that problem.

Oh this day just keeps getting better!  I had previously arranged to go with a friend to see Skyfall, the new James Bond film.  Despite being desperate to cancel, I knew if I stayed home something would crack, so said to Dave I would rather go.  I thought kids were ready for bed when I left, so felt okay about leaving Dave.  I swanned off to have a much needed great time out at the cinema, totally relaxed and returned buzzed and refreshed.  I then find out Dave had a really tough time with both boys fighting and an hour trying to separate them and calm Tom down.  Part of me was glad I wasn't there, as I doubt I would have been of any help.  But poor Dave, I think he needs some time out.  So we stayed up an hour or two just chatting, before crashing out.

The day should have been fun and a celebration, and one I had been looking forward to for a while.  Well.  Some days just don't play ball.  I chatted with Tom on the way to school this morning, and said today would be better, today we would all have a much better day.  He agreed.  I will do my best to keep my part of the deal.  Lucie is bouncing around right now like a puppy, looking like nothing is wrong, and begging for a walk (probably loving the drugs!).  I keep telling her the vet said no, but this girl doesn't take no for an answer.  So today is already looking better.   We meet our new social worker this afternoon, and right now I don't care what she makes of us!! And in time, I will forget the stress, and remember how proud I am of Lucie for qualifying.  Job (well) done. :)

Tuesday, 6 November 2012

6/11 Video - Alex playing & talking with Lucie

I've put together a short video taken this week, as we noticed Alex playing much more interactively with Lucie, and chatting away to her. Whilst he does 'chatter' most of it is inaudible, but we are starting to pick out some words, and they are not only relevant, but totally unprompted. Quite amazing! Filmed on the ipad, it does that strange portrait view, I have not yet solved, but hope it gets the point across. Alex is changing all the time. He is starting to get involved with other children, and smashing away his strapline 'Lives in his own world'. It seems Lucie is opening the door to him coming and joining our world, and its a pleasure to see!

And just before I link the video - my news this week is I am off to Sheffield for the next two days, as my final big test to qualify with Lucie is on Thursday. If all goes well we will lose our 'L' Plates, and will no longer be wearing the 'In Training' jacket and lead. I will update on my return to let you know how we got on. Nervous? Nah (!!)

Monday, 5 November 2012

5/11 Flying and Aspergers

Its difficult to know where to start a blog when it has been a while since I wrote. Sorry - this may be a long one!...So much has happened, and in the last two weeks I have barely been at home. I worked for two days in Warwick helping my sister at a conference she co-ordinates. Great fun to be back in the corporate world for just a short time, and a break from my usual life. I then had the best three days you could wish for, staying in Wokingham, and visited by a good friend from Canada. She is my husbands cousin, but since she feels more like a sister, I want to adopt her as my family too :) For a whole weekend we chatted, drank wine, and behaved like teenagers. On both parts I think it was much needed, and left me refreshed and ready to take on the next bit of life. Sometimes being away from your family gives you time to really straighten out your priorities and go back with more focus. But no rest for the wicked, I was only home for one night, as the next day I was taking Tom for his first flight abroad. I might add, that although we returned 4 days ago, it has taken me this long to write about it as Alex has been ill, and in all his frustration threw the new laptop, smashed the screen, and I now have acquired a replacement monitor. An expensive week.

This blog will have nothing of Lucie, or Alex, but what I wanted to share was my first experience of taking my son Thomas (now 7 years old) on a flight, and what it was like travelling with him, and his Asperger's perspective. The trip was set up a few weeks ago when a good friend I have known since University days, had kindly invited me and Tom to visit her in Geneva, where she had just moved to. It was even better as she has two children around Thomas's age, so he would have company whilst there. So we booked an Easyjet flight. I have always wondered what it would be like trying to get our boys on a flight, and what issues may arise, and as is typical, its never the things you think of that come up. As Dave and I both have family abroad, we are aware one day a flight may be a very real option, so it was better to trial when there was less at stake.

In preparation I had ordered the great booklets you can get from Manchester Airport which helps children with ASD familiarise themselves with the flying process, and deal with what they may encounter in the airport. So I went through that with Tom, and discussed such things like security, X-ray scanners, waiting, etc. All seemed fine. I was asked by people, "Is Tom excited about going away?" No. Tom does not seem to do excitement, he deals with the here and now, what happens in the future seems of little relevance (unless it is Christmas and involves presents!). So I put up with his nonchalant approach, then things changed the night before departure. In the bath he suddenly declared he would not be going, he wants to give back his ticket, and he would not be getting on any plane. On asking why, he said he would be too cold in Geneva. This had been something he had murmured about, so I had specially bought thermals etc for him. The irony is the temperature was very similar to Chorley, but there was no persuading him. During complete meltdown, Dave bribed him with the prospect of buying a magazine and sweets at the airport. Not a tactic we would normally resort to, but we needed leverage, and it was a temporary fix.

The day of travel, I used momentum to try and get Tom into the idea of flying. We had to first drop off our Canadian visitor and Lucie with grandparents, then take Alex to Chester where my parents were looking after him, then my Dad would take us to the airport. It all went pear shaped as Tom got car sick, I think more through stress. We just got to the airport drop off point, I got Tom out quick, but he immediately started kicking and hitting me, screaming and going wild. At this point trying to get back in the car saying he was going home. I need not say how stressed I am. All this is supposed to be a great treat for him, and right now I can't understand why I am putting him through hell. But I needed to know if we could ever fly with Tom, and I wasn't going to wait for a big trip where our options were slim to work out what I was dealing with. So I persisted hoping it was just adjustment. I told my Dad to drive off, so Tom was clear about our options. I stood in a car park with Tom looking decidedly hacked off, and decided to get him into the airport.

From there the momentum of transit seemed to keep him going. He seemed calm if not unimpressed by his surroundings, but did ask the odd question, so I think in all it was going fine. We bought the promised sweets and magazine, which was a great distraction when needed. Security got sticky as I had to get a proper search as I always set off the alarms (do you think one day my Mum will remember I have a metal pin in me somewhere, or maybe my brain is made of lead)..anyway, i think we looked stressed, and Tom and I look nothing alike, so we got pulled aside. As they frisked me a second time, the man took Tom aside to ask him some questions. I could overhear. Tom didn't understand him, as he phrased them in a way Tom would not get. He tried to ask Tom where he was going, he answered 'With my Mum', which got the man confused, then he told Tom to take off his shoes, mine were already off. Thankfully I had told Tom that may happen, so he was cool with it. I shouted across to Tom what the man was trying to ask, and then he said 'Geneva'. After a thorough check we were let through. No hard feelings. As a passenger I prefer security to err on the side of caution!

At boarding, facing a huge queue, I lost all social graces, and when parents with young children were called forward first, I rudely decided that meant us, and took Tom to the front. Technically it is for under fives only, but I was on a knife edge with his behaviour, and with the plane fully booked was very worried we would not get two seats together (the price of low cost airlines!). My bullishness paid off, and we boarded first, and sat together. Tom still emotionless. The first stroke of luck came when after some confusion with a family next to us, the lady next to me moved. There was one empty seat on the plane, and it was next to me.....result!! Then take off. I was explaining to Tom all that was happening, and the plane gathered speed on the runway...finally!!! Tom gives a half crooked smile, which for me felt like a giant grin, and he seemed mildly content. As soon as we were through the clouds, I could see him engaged. He started to chatter, which made me realise he had barely spoken till this point. He commented on the clouds looking like a 'fluffy land', and talked with imagination. These days I am not such a relaxed flyer, and as Dave would testify I squeeze his hand till crushed and white when we take off. I think he thought I was utterly relaxed during childbirth compared to what he has to put up with me being like on a plane. But with no Dave next to me, I had to look totally chilled, and hide it all.

I also discovered at this point Tom does not know how to suck sweets. Yep - don't know why. Not that we ever have sweets you suck, but on a plane you do. Despite my instruction he accidently swallowed two Werthers Originals whole before learning the skill. Personally I'd rather my ears didn't pop than have two toffees stuck in me, but there you go.

He reviewed the safety card as the flight attendant instructed. He then told me we were not sitting correctly and our hands were in the wrong position. They needed to be placed exactly as in the picture. It took some reassuring him that was only in the event of a problem, and we could sit any way we liked until then.

Ten minutes in he decided he needed the toilet. Tom went in alone, I sat down again, as I had waited a while for him and checked on him, but he assured me all was fine. All getting slightly embarrassing. I think it was well over ten minutes, but Tom being on the toilet is like any kid in dreamland, it is not a rushed activity. A queue was building, and Tom took his time. Its hard to look like you don't own him when he sits down next to you. Bless him, after all he had been through, I thought it better not to rush him. Ho hum.

A little Swiss boy sat in front of us, intrigued by Tom he spent most of the flight staring. I tried to get Tom to say Bonjour, but he couldn't even make eye contact. The boy was fascinated by Tom's magazine and toy I had bought him. Strange seeing kids trying to engage but not know how to. In the airport I found a toy that we have had a few of in the past, we call it a stress ball. It is a squdigy ball filled with goo, you squeeze, and then pop down the bits that pop out. Great fun, and I thought would keep him occupied while flying. It worked a treat, until a crucial moment right after landing. Tom quietly said...."Mum...." I looked down to see exploded fluorescent gloop everywhere all over Toms hands and dripping down. I grabbed a sick bag and chucked it all in, gathering the mess and doing my best to clean up me and Tom. A rather unimpressed flight attendant was handed the glow in the dark goo upon exit.

I have to say landing alongside Mont Blanc and the Swiss Alps was the most stunning landing I have ever had in a plane. I was in awe of the scenery. I asked Tom what he thought of it, to which without thought responded "I've seen better, cause I have seen crystals in a cave". Oh - not sure when, but fair enough. Ask a silly question.

So that was my odd flying experience, it seemed surreal. Tom's reactions were hard to read, I think mixed with excitement, fear, trepidation, enjoyment and nonchalance. I have learned not to ask too many questions, and just accept his reactions for what they are. The theme continued throughout the trip. I won't take you in to finer details, but he surprised me with what did or didn't interest him and his comments were abstract.  In visiting Geneva city the next day, he seemed unimpressed by the new double decker train we were on, but asked different questions like, " Will there be lots of people, is it a busy city?" And when walking around commented that it smelt of apricots (which amazed me that he even knew what one was). He barely reacted at the Jet d'Eau, 400 foot fountain on the lake, yet I saw the sneaky half grin at the clock made of flowers, which I never thought he would like, and he was happy to enjoy watching the second hand for ages.

So I learned a few more lessons this week. I still have no idea how my sons brain works, and what will or won't be an issue. All my planning could never prepare me for his reactions. Its hard when you know you will come home to "How was the trip, did Tom love it?" , and I am thinking - I'm not sure, I think so. I think I would have no fear to taking him on another flight in the future, but would be better prepared for his perspective and sensory overload. I am still proud of him for such a big achievement. Now Alex? There's a whole other challenge....maybe one day, but don't ask me for some time.....