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.

Nobody's Perfect!

I am thankful this morning for heavier traffic on the road home, it means I have to take the long way back from school. The radio is on but I don't hear a sound.  I'm concentrating on not crying because the guy in the slow moving lane next to me is staring intently at the car, not too sure whether he thinks he's going to get in a bit of car flirting before the office.  Not with this lady your not!  Today I am having my blip! STOP the world, I want to get off day!!

I don't have them that often but as a mother you rarely have time to think about stuff other than the here and now.  Certainly been given food for thought from my family this weekend, and I'm feeling the after effects. 

Yesterday should have been a very proud Mummy moment.  One delightful memory that is locked in time that you find you boast about when meeting up with people you haven't seen for an age.  I may well do that but certainly not with the same enthusiasm.  You see our 'Bob' was awarded a Subject Award for Science at his school's presentation last night.  In Year 9 'Bob' managed to jump from the lowest set to the top set in one year, now that's an achievement in anyones books but 'Bob', not only on the spectrum and ADHD, is Dyslexic.  He has come on leaps and bounds but it is always a contentious issue, and he has already identified this may stop him from living his dream of becoming a Pilot.  Autism kicks in, ADHD kicks in and the combination does not make for comfortable association.  

The school may well have had their arrangements working like a smooth oiled machine, but for 'Bob' he didn't know what to expect; There wasn't even time set aside to run through with him what he needed to do before the event, so he WOULD know what to expect.  I felt very let down and all I can say is that meeting on Thursday afternoon, well I've added something else to my list of discussion points.

And to top it off our 'Bob' also happened to have his appointment for his 2nd EEG that morning.  The anticipated demand of the day just gripped my Son all weekend, physically and mentally.  I had complaints of feeling unwell and headaches. The reluctance to engage in any external activity fed the anxiety so we just gave in and allowed 'Bob' to become engrossed in his fantasy life on the PC.  The slightest request would trigger an outburst, I have been elbowed, prodded and punched this weekend.  My Boy does not normally have angry physical outbursts like that.  It may be we never see this on a regular basis because of our meltdown management, or it could simply be our life generally does not herald multitudes of social engagements. It was unusual behaviour!

It's not just 'Bob'; I have an overly stressed and tearful final year student, desperately juggling student and work demands and a Hubby who is pacing the floor and becoming incredibly anxious because we have a plasterer in the house!  A situation very much out of his control.

At this point I am folding my arms around my head in a tight self head lock.  Oh there's no point in that, my blip in life will still be there.  I just need to claw my way out of this hole I've put myself into.

The lady in my life Mrs W, who covers my back, who picks me up and supports me when I can't hold myself up, the one who knows when to take me home after I've had one too many grape juices sent me this 

My Xmas Pressie

And the support from Twitterette's is fabulous!  I am going to put on my virtual armour; Might be a little bit clunky; And if you hear a clanky clank It might just be me following you down the tinned veg aisle in ASDA.  So for the next couple of days I will cover up, lick my wounds and remind myself I cannot create 'perfections' in my family's lives...... Who am I kidding I will keep doing that just next time I'm packing the tin suit!!!

Can We Go Now?.....

How many times have we heard this one!  I don't know about anyone else but this one is an absolutely favourite phrase with our 'Bob'.  The outside world harnesses so many irritations for him given a choice he just stays put, and the more he understands about his sensory issues the less compromising he is becoming.  My worry is that he will become such a recluse that the fantasy world will take over the reality of living.  'Bob' has this ability to completely detach himself from the real world and pop into his parallel dream life like he's going to get a pint of milk.  Our latest acquisition is a game called Victoria II, and I believe it has something to do with taking over the world one country at a time through virtual battles.  His spare time and attention is taken up by this blasted game at the moment.  So when I just happen to mention we have a family wedding to go to this weekend I am presented with a number of demands!  Negotiations have taken place and no hostages will be spared!

This always happens whenever we have to go out.  I have to add at least an hour or two into the plans because no amount of planning can make adjustments if he is just not in the mood!  The slightest thing could set him off; the computer stopped working in the middle of the game; the toothbrush isn't where he left it; I've given him the wrong cereal; the sun is the wrong colour... just about anything! In preparations for the trip we bought an iTunes voucher for the iPad, installed a similiar game to Victoria II and made sure all technology was fully charged and deposited the charger in the car cigarette lighter in anticipation.  Great! No excuses for not being able to take over the world! 

Now for the outfit.  Like so many other children on the spectrum, 'Bob' has particular sensitivities with some textiles and items that are too tight or restrictive.  So the latest fashion trend for young men's suits being well fitted is going to be an obstacle but I'm usually up for a challenge.  I want 'Bob' to look like all the other young men who will be there and what I don't want is for his clothes to become the neon sign that say's he's different.  After a very successful shopping trip one on trend suit, shirt, tie and really trendy shoes have been bought with the promise that the trousers would be tried on at home because 'Bob' doesn't do fitting rooms either!   And all on the eve of the wedding because world domination has to take priority and we only have one shot at it.

I'd organised the morning itinerary and the family all had a good idea where we had to be and at what time. For once 'Bob' is slightly giddy; so I am thankful I had left giving him his ADHD medication till the last minute.  Now by this point there's no meltdown or screaming abdabs, everyone is relatively chilled and the journey is without incident.  'Bob' had been briefed on the type of wedding service, he had been to the church before so that was a bonus and to cut a long wedding short, it all went well.  The fact we didn't engage in the social chit chat is neither here nor there, most of the family know 'Bob' anyway.  Thank goodness! Mr AUTYnary finds these events excruciating and the social chit chat doesn't float his boat either.  The pair of them look like a couple of bookends standing on the peripheral of the group, completely disengaged with the process.  As usual we have arrived at the reception before anybody else; it's a time thing ensuring we have got there with plenty of it to spare just in case!  

The wait for food was even bearable thanks to an apple. How many unsuspecting photographic victims can one person take pictures of from the dinner table? 64 to be exact.  Take a look at the best one....

Anybody for a selfie?

DIINNNEEERRRR YUM YUM!

On the home straight now.  We've got to the dessert without any intervention.  Yayyyy! This is looking promising and could be a good night.  There I am looking very pleased with myself and WHAM! 

'Bob' - "Can we go now?"

Me - "Nope we have to stay a little bit longer."

'Bob' "Why?" "I've eaten my dinner and I'm still hungry?" "I need to get back or I won't have time to finish my battle."

Me - "It's rude to just go after food, you have to stay for the speeches and cutting the cake that's the rule."

and off he wanders.....

'Bob' - "Can we go now?"

Me - "Nope we have to stay a little bit longer."

'Bob' - "Well I'm not having that rule when I get married, I'll go when I'm ready!"

What do you say to that one?  'Bob' manages another couple of hours of "Can we go now?", and Mr AUTYnary manages to drink my share of the free wine (I'm designated driver for the night).  Not too sure who got to the car first though 'Bob' under his own steam or Mr AUTYnary pushed along by the high wind.  In the world of "Can we go now?" I can safely say that was a good night!  It's not always that easy and I'm mindful that all our trips aren't as successful.  The thing is I will keep presenting 'Bob' with these jaunts no matter what just to make sure he doesn't disappear into his version of the universe.  I fear I would lose him forever.

Stop The World I Want To Get Off!

Where once there was a storm we now have calm....  Or do we.  After a rather explosive week with our 'Bob' and busy weekend walking in a carnival, stripping two rooms and our voluntary groups first session back I am knacky nood!

My head is so mashed with information, thoughts, things to do, the shopping list... I am finding it incredibly difficult to actually get anything tangible done.  I'm not pulling out the screechy violin for sympathy votes but some days I wish the world would just stop...

Yesterday there was a link bouncing around social media regarding a National Service Bill, it caused a bit of a stir certainly in our circles, and after asking a few questions the response was this was a Private Member's Bill which had been put forward for debate but had been objected.  If you read the content the exemptions for SEN were vague, and at first glance unless you are severely disabled or have severe mental health disorders then you would appear not to meet the exemption criteria.

It brought home to me that even though parents constantly worry about our children, and I'm a parent of a twenty-something ordinary young woman with incredible creative talent and all round beauty, that for a SEN parent worrying is brought to a new level.  I mean I could see our 'Lil' doing the time, it would put her out and it would mean that her dream of working in Fashion would be delayed but she would cope. She would be mightily miffed if you sent her out in the field it would ruin her nails and there is just NO style in camouflage fatigues.  In principle the bill is about public service which in reality she is more than capable of achieving and many other young men and woman would be too.  I don't feel that need to constantly look out for the 'what ifs' or 'maybe's' like I do with our 'Bob'.  I'm always mindful that I spend a significant amount of time in fight and flight mode, ready for the next battle to come rocking up!  I'm wearing myself out without actually doing anything.

I mean can you imagine a group of high functioning autists or anybody on the spectrum deciphering the meaning behind a screamed "Double time!" or the response you would get if you shouted "Stand to attention!" Our 'Bob' would be looking for attention so he could stand with him!  And to ask 'Bob' to go out into the community do charity work or go overseas for development activity would be limited by sensory issues, anxiety about security, engaging in decision-making NOT, and polite conversation would cause a right whoha!  My point is that it is not easy!  I find that I make adjustments in our everyday life to ensure our 'Bob' can manage this crazy world we live in, I respect I can't change the whole world or everybody living on this planet's attitude (not through the want of trying!) and that's just life! It doesn't stop me worrying about issues I don't have control over and how it affects us.  So, I will keep wishing for the world to stop some days, I will keep putting on my armour most days and I will keep worrying about my children every day of my life!

Hey Ho! Hey Ho! It's Off To School We Go....

The dark cloud had finally immersed our house this morning! I feel I should be playing some dum dum dahhh music in the background.  This year there was no new bag, no new shoes, no new pencil case or pens.  In fact the blazer became such a contentious issue; well quite frankly I just threw my arms up in the air and accepted defeat! Well not completely! Like most mums and most mums with children on the spectrum I try to be two steps sorry two feet ahead.  I cope by having backups, backups that nobody else knows about, those secret little draws or hidey holes stacked with contingencies and a mind of solutions and resources.  It fits in with my strategy and allows me that indulgence of taking things up to the wire - Meltdown Management!  I laugh and tell people I live by the seat of my pants, which is partly true my time keeping is atrocious unless we have Mr and Master AUTYnary with me (where to start with that one it is a post in its self!).  I rebel you see, not often it’s just the teenager in me!

So there I am early this morning washing out pencil shavings out of the bottom of old case, decantering last terms books from rucksack and frantically polishing up a well worn pair of school shoes in silence.  Re-pressed the trousers, shirt and tie - check.  Clothes in the right order - check.  Shoes at the bottom of stairs - check.  Blazer no more said about that - check.  OK let's go.

I'm mindful about our 'Bob's anxiety, even more so this year because he has been so vocal in expressing it!  His school have been really good supporting him. They have spent lots of time talking about social and emotional issues, helping him develop his own strategies to manage these aspects of his life in particular whilst at school and delving into the world of social interaction from which he will recoil.  So I was confident if I made the call and spoke to the Learning Support team, between us we could set about lessening the impact with some discussion and reinforcing positive messages of support. Call - check.

So engrossed with the uniform debacle, forgot all about the fact that 'Bob' had missed the last two days of the summer term because he had an emergency visit to hospital.  Now was this a factor in the anxiety? I mean we didn't fully complete the school term, didn't get to say those goodbyes and the reminders that come with closure of an academic year.  SIX WEEKS ON? Surely not.  I know my boy can hold onto 'botherings' but this one is going to be a record.  The ability to be consumed by irritations, and produced hours and days later is a key skill he developed quite early on.  One in which I usually see coming!  Patterns of behaviour don't generally change plus I know my son! School, being fantastic again, have suggested they get his TA to have a chat with him and will try to discuss how going to hospital made him feel.  I thought "Good Luck!" That old chestnut had been and gone, but there was the off chance he may share the experience!  What they're likely to get is a grunt!

I try not to bellow up the stairs but for a split second I forget.

 "C'mon lazy bones up you get, It's school time!" .....Ooops

There's clonking and banging, and shuffling of feet, then bang, bang, thud, bang, thud....he presents himself with a blanket wrapped round his head.

"Where's me breakfast?" I point in the direction of a breakfast bowl, glass of orange juice and medication carefully placed in a line.  So things just never change and the order in which we receive our breakfast is one, the order in which we put our clothes on and the order in which we scrub up in the bathroom are the others.  

Reassuringly I let 'Bob' know about my conversation with school, to which I get a grunt! I pass on the information about where he goes, what time and how the timetable will look today, I get a grunt!  We manage to not pace the hall but I can see the anxiety is taking its toll, and what he really wants me to do is to get in the car and arrive half an hour before he needs to be.

We don't talk on the drive there.  I pull up and 'Bob' grabs his bag, gets out and disappears in the sea of bobbing heads.  His anxiety may have lifted slightly but mine has just increased. And did he have a good day...no idea he doesn't want to talk about I just get a grunt!