Friday, 31 January 2014

And the journey begins.....

There is this incredible difference between thinking about something and it actually happening.  I’ve been preparing myself mentally for our ‘Bob’s transition from what seems an age.  Still struggling to come to terms that my little man is now standing taller than I, and his shoe size is bigger than Mr Autynary’s!  A couple of things have happened in the last couple of months, which give us just a snifter of what is to come.

As many parents in the UK will be familiar with when our little angels or terror teens, whichever is your preference, enter Year 10 there is a rush to prepare them for the ‘outside’ world.  An experience, hopefully in a field of work they are interested in pursuing when the leave education.  I’m sure there are many of you out there know that when you rush something quite often there can be oversights. So when  Mr Autynary and I trundled off last November to the Year 10 work experience parents evening full of hope and exciting thoughts for our boy, what we didn’t realise was the difficulty he would experience in connecting with those typical jobs offered for work experience placements.  After the event we both knew that the information given did not fill us with the reassurances we needed to feel comfortable that ‘Bob’ would find this process accessible.  Shuffling down the queue, and it was quite clear we weren’t the only ones feeling that  way.  Conscious that the person we needed to speak to would identify us as parents of a child with ‘special needs’!  So uncomfortable was that turn to the right!

Our ‘Bob’ was dead set on trying to find his placement within Manchester Airport, he had it fixed in his mind and that this is where he wanted to go and there really was no backup plan.  There was plenty of confusion about the whole process, which just compounded all his anxieties.  There was an expectation that the students should take the lead and have that experience of sourcing placement, researching contact information, putting together their CV and talking to potential placement employers.  For ‘Bob’ that was just not going to happen, and he had convinced himself that it was up to me and Mr Autynary!  If you ask him about himself or ask him to make a decision, his response will be

 “Speak to her”, meaning me!

‘Bob’ does not favour conversation face to face, so how on earth am I going to get him to talk to someone on the phone!  Well, it didn’t happen, I can tell you, flat refusal!  The moment I raised the issue, he got into an almighty meltdown and shut down.  It would take days before we could even slip it into conversation, and with the constant fear that we would upset him we only manage this when he was in really good spirits.

I knew it was up to me to start this ball rolling, I’d already informed school, we were having difficulties, but we still felt that although they were talking to ‘Bob’ about it in school, there was an expectation that he had to complete this himself.   It’s the ‘doing’ bit that was the problem and it was practical help we needed.
Taking the bull by the proverbial horns, I spoke to the work experience placement officer at the Airport.  She was a nice enough woman, somewhat patronising and after asking me where we lived and what school ‘Bob’ went to informed me that we didn’t meet the Airport’s criteria because we were out of their catchment area.  Interestingly enough, she then followed this through with informing me about the criteria of other employers, and typically they would insist on speaking to the young person concerned.  By this point my defensive hackles were up, and I had to explain that ‘Bob’ was on the autistic spectrum, to which she said

“Well, you have to say that one in the first place!” “You still don’t meet our criteria, though!” and “Well employers will still need to speak to the young person!”

Ya’don’t say Sherlock!! 

By this point I am livid and with desperation started flying off messages to people I knew who might be sympathetic and help!  Then I’m outraged, if I’m struggling how many other parents of young people with Asperger’s or high functioning autism are having the same difficulties.  When you actually start to strip back the logistics, support for the young person and risk assessment of the individual needs, the process takes on a different dimension.  One which I think has been overlooked!

How many parents out there in desperation for their children to experience the same journey like their peers, are relying on taking them to their own place of work, or family or friends!  Even more upsetting how many children are left behind at school?

‘Bob’ is now resided to the fact that there is no hope!  I have had some contact from great supporters, but yet nothing has been forthcoming, and conscious he won’t be left behind I’m resided to the fact that he will have to come with me and experience one week working as a volunteer!  Not exactly the industry our ‘Bob’ wants to work in when he leaves school, but if it means he will experience the process of going to work and a working environment then we can tick this off.   Worryingly though how many young people with autism do just that, volunteer, because there are not the employment options out there!  Food for thought.

Monday, 20 January 2014

The Dentist!

I don't know about you, but I am absolutely petrified of the dentists! I'm from a generation that was frog marched to see the school dentist at the local clinic, thrust into a cold dental chair, filings and extractions without numbing, and the unnecessary view of hairy nostrils!  So I promised myself I would not put my children through that ordeal.

From our 'Bob' being little I used to take him with me to my dental appointments, I wanted to acclimatize him to the experience not scare the ebby jebbies out of him, so took the softly softly approach and braved it out myself.  It had worked with his sister so in my naivety thought it 'worked for one it will work for the other one'.  How far from the truth could it have got.  Unaware at this stage about autism and ADHD, just thought he was being a 'little monkey' when he refused to open his mouth for the dentist or the time when he bite his finger.  Well, I must say he's a dentist and should have known better than flaunt a digit near a four year old child's mouth!  We just about managed to get him there once a year, and that was agonizing; The screams, the blatant refusal, the chasing round the surgery and trying to coax him out from under the dentist's desk!  It got to a point when he used to check his teeth whilst he was upside down on my lap on a swivel chair!  And when the old dentist decided to retire, OMG!

There were moments in time that the least of my worries was a trip to the dentist and I will hold my hands up we didn't necessarily meet our checkup dates!  After our 'Bob's diagnosis, our lives levelled out and an acceptance that it was never going to be quite how you had dreamed of and you would just have to get on with it.  The 'normality' of life had to find its place in the new version of ours, so visits to the dentist had to be dealt with head on along with everything else.

Dreading having THAT conversation where you actually have to say out loud, "He has high functioning autism.." and wait for the "Oh right.." followed by an awkward silence.  Assuming you were going to have to take the lead on this and partake with all that autistic information you had soaked up like a sponge; Sharing suggested strategies, website addresses and offering leaflets that you had to do so many other times before with professionals was at the forefront of your mind!

How refreshing to hear " OK, how can we make 'Bob's visits easier?" "Tell me about his sensory issues?" "I'll talk to 'Bob' about everything we will be doing and show him the equipment and we take it all at his pace!"  Had I found an angel? Was this a fluke? Am I hearing right?  

True to his word our dentist took time out to get to know our 'Bob', built up trust and went at his pace.  There were the odd times when we had some glitches but the difference was we were working together.  Our 'Bob's dentist shows him on his high tech screen his x-rayed teeth, explains the dark patches and the light patches, why he has to have the treatment and if he didn't what the outcome would be.  When he struggled with his first extraction and the huge needle used for numbing, the fact it took two appointments to actually complete the procedure did not faze the dentist at all.  

After many years struggling to understand why my children had teeth difficulties, our new dentist was the one who identified that 'Bob' and his sister had a genetic abnormality of the tooth enamel, and it had nothing to do with their dental care.  Slight relief after 'Bob' spent years chewing his toothbrush and eating toothpaste, that his brushing skills weren't too bad!  And it's amazing how effective a free mini toothpaste tube can be on our morning teeth cleaning routine.  Though I sometimes wonder if  it's the buzz he gets as he whips it from the box on the window sill as we make our hasty exit from the surgery!

Our recent extraction last Friday was another successful trip.  Our 'Bob' talks the hind legs off a donkey, but the dentist seems to have the patience of a saint; he's also quite firm with 'Bob' too, and you have to be sometimes or 'Bob' will just go off on a tangent and completely railroad you.  It's remarkable how 'Bob' can change the subject back to the flight path of the new Dreamliner, and how on earth you can make the comparison between it's wind speed and how quickly you can remove a tooth beggars belief!

You can so understand how parents on finding remarkable professionals just want to spirit them away, and don't want them to move on.  Investments have been made in those relationships, and it makes a huge difference in the daily battles; one less can lighten the load so much for families.  Our dentist might not be everyone's cup of tea, and there is nothing 'magical' about his manner, but if you could bottle his attitude and approach carry it around with you, sprinkle the fairy dust on all the professionals you meet, what a slightly less stressful life we would all lead!

Tuesday, 7 January 2014

The Weather Station

Strange analogy comparing a Weather Station and Autism but it is amazing what you think about when normal routine has been broken.  Our 'Bob' had requested a super duper wireless Weather Station for Christmas and the indoor unit has been placed on draws behind the sofa.  So you can imagine whilst we have had such dreadful wind and rain we have all been obsessed with checking the data.  Our 'Bob' has been using it in conjunction with his real time flight simulator, Mr Autynary concerned that the gusts won't take out the new roof, and I who whilst  in a seasonal reflective mood drew my attention to the data titles and found myself making those comparisons with ASD.
The constant is the date and time; that's Autism.  It will always be there!  But like time management we strategize and plan to manage autism so it doesn't control us.  And when you lose the momentum of time management/autism you can feel tired, out of control, confused and nothing makes sense.  The balls have to drop sometime like the qurkism that is a leap year! We make reasonable adjustments in our lives.

Inside data reflects humidity and temperature, these are variable but can be controlled.  As is the core of an autistic persons temperament and judgement not everyone is the same, and with many environmental changes can impact mood, tolerance and sensitivity.

Outside data, again reflects humidity and temperature, variable association but this one we certainly don't have any control over at all.  I realised (I do that quite a lot! Epiphanies happen to me all the time I'm surprised they don't put me in a darken room! ) that this is another stark realisation of the world. We can't control the World, it's perception and the people in it.  We can influence but that's not enough.  It may be my world is so consumed with all things autistic that you could present me with a baked bean can and I could find something autism related with it.

And there is this beautiful visualisation of the outside world; big sun; clouds; rain; snow.  Something which would have had vibrant colours on our 'Bob's visual timetable. The view into the vast entity that is The World!

Here comes the Pressure! Now don't get me started on this one.  We all experience this cooking pot.  I am amazed though how our 'Bob' can keep his rattling up on high for such long periods.  It does worry me that holding on to such stress will have on his physical being never mind his mental state.  There is a Star Trek quote "I canna hold her much longer Captain she's gonna blow!" **think Hollywood Scottish accent**  And I have this nightmare I will find him collapsed somewhere.

By the time I've got to the bottom of the screen I'm exhausted which fits in nicely with wind speed and rainfall.  Life can be an absolute wash, or an almighty tornado hellbent on wrecking a path through your life, or it can be limpid, serene and tolerant.  

We accept the information from the Weather Station as given, it's part of nature.  Yes, we moan about it but all told we do venture into the darkest of storms, sunniest of days and no harm comes to us (Wellies and Sunscreen are required).  Brave individuals will chase the storms and incredible Explorers venturer to the coldest parts of the world with some uncertainty and risk but they still go there.  Governments invest in the Weather it brings so much to this world; Research and Development, Environmental rescue and support. Why can't the world just accept Autism as a given it's part of nature, it's part of our 'Bob' and so many other Children & Adults on the spectrum.  Why then can't the Government invest more in our 'part of nature'? Why can't the world just accept Autism is not going anywhere and work with us not against us!  Our 'Bob' is an ASSET and he IS worthy of investment too!