Back On The Frontline

We're back.......... "Run for the Hills" I hear some of you shout!

I've re-started this blog over a million times, and with every stroke of the keyboard keys just wasn't happy.  Where have we been?  Not far, just my priorities changed.  For those parents who are familiar with transitions will appreciate the saying "when the going gets tough, on goes the armour".

Life was not being kind to our 'Bob'.  Exam year, revision, future decisions, and more decisions = Stress, anxiety, low mood, and lack of self-esteem and confidence.  We needed time out to concentrate on his issues and clear our minds to be able to deal with the decision making placed upon him by the transfer process from his Statement of Education to the new Education, Health and Care Plan.  What a shambles!

Hang on a minute whilst I drag my soap box out from under the stairs.  Now I've been involved at a strategic level locally, wearing my professional cap for a couple of years.  Even having this knowledge did not prepare us for the increased stress and anxiety on our household.  Where was the impact study on decision making process for young people?  Where was the consideration for those young people 16+ who were deemed able to make their own decisions yet are known to struggle with communication?  Where was the discussion around and the plans for those young people who may be affected by mental health issues?  I believe in the principal of the changes, but boy, you can tell that political timetables were running the show.  These changes are the most significant in over 30 years, surely someone would have realised that perhaps squeezing it all through at the same time might be a tad bit optimistic, and not without its prisoners.  My son is not being one of those prisoners, I will NOT let this happen.  So many parent carers have dusted off the shiny outerwear and got out the Brasso, for something we were reassured would not be another battle.  However, this is what it has turned into!   All this gives new meaning to the lyrics "Walk a mile in my shoes...."  Well in this case OUR shoes.

We can all look back in hindsight and make judgement.  The preparations for this have been ongoing for over four years, surely these questions were asked and discussed over a couple of glasses of Pinot Grigio in the Parliamentary Members' Dining Room!  Personally, I am, and I'm sure I'm not the only parent carer out there, exasperated by it all, drained of every ounce of unused energy.  Not that there was much left.  

We as a family have had to change direction, change strategies, aspirations and goals.  Have you noticed the elephant in the room......?  CHANGE!  It doesn't take a genius only someone who is prepared to put in the time to find out what affects young people with Asperger’s or high functioning autism. No need to move the earth, sun or moon here.   So much for the process to be person centred, stumbling your way through it just makes a mockery of the whole ethos!  Soap box put back in its place.

So as I'm typing this our bleary eyed 'Bob' demands clean clothes, but not any old clean clothes, pyjamas!  Pyjamas, it's three in the afternoon and he has only just got up!

"Joggers?" I ask

"No!" proceeded with what seemed to be a 2,000 word verbal essay on why we can't possibly where these particular joggers.

"No PJ’s I'm afraid.  Tough boobie doos, joggers it will have to be my boy!"  

Disgruntled, he disappears to examine further the objected joggers.  It doesn't take too long before he is back downstairs and the whole episode has been forgotten.

Life!  Crikey in for a penny, in for a pound today!   We have a new addition to the family, a 10 week old kitten called Roman, who insists on sitting on the keyboard whilst I'm typing.  So in the true meaning of inclusion here is a little insert from Roo.

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Don't know about you guys, but I've always wondered whether it would be obvious to see those genetic personality traits we all attempt to seek out in our offspring.  It turns out our 'Bob' is a chip off the ol' block and very opinionated like his Mother.  In our attempt to spread our 'Bob's social wings, he has joined a local young person’s forum and Youth Cabinet, and has thoroughly enjoyed it.  He continues to strengthen his ability to voice his views and opinions on autism, disability and the World, and hearing him talk about his difficulties has opened my eyes and my mind to all the other possibilities for his future. He brings tears to my eyes when I least expect it.  Incredibly unpredictable.

Knowing how difficult it is for our 'Bob' to put himself out there, he challenged perception and his own demons, and put himself forward for the local Youth Parliament elections.  Now just putting your name down can be harrowing, but bless him, he wrote his election speech and filmed his election video which was sent round to all local schools.  We went through every result possible throughout the couple of months wait.  Finally the vote count was on, and a reception at the Town Hall meant that 'Bob' overcame a huge amount of social anxiety about unfamiliar places and people to attend.  I was sent away with a flea in my ear because "nobody else will have brought their mums".  Sad face!  I waited in the car park for ages.  

His face said it all!  He was last with 303 votes, disappointed yes.  How do you recover from that blow?  With a lot of positives and a bag full of love.   The fact 303 young people voted for him was incredible!  He was my Hero, it wasn't about beating someone else, it was the 'doing it', it was pushing yourself irrespectively of his internal turmoil to try something new.

With reassurance I told 'Bob' he could try again next year, to which he responded with an emphatic "No".   The embarrassment and now known anxiety had left its mark, an episode in life ticked off the bucket list but NEVER to be revisited again.

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!

Food NOT So Glorious Food

Food and the art of eating it has always been a contentious issue in our house, long before the children came along.  Before I had my epiphany about Mr AUTYnary and his undiagnosed Asperger's I used to think his attitude about food was incredibly unreasonable at times, spoilt, snooty and downright stubborn and when I presented him with a home cooked spag bol and he would only eat the bol! I really did become quite paranoid.  He would claim that the pasta was like eating slugs all slimy and I often thought this was quite simply an exaggeration.  So many times he used to remove himself from the dining table because the noise of crunchy carrots was like someone running nails down blackboard, or the over dramatic outbursts at the prospect of crisp packet rustlings whilst watching films.  The rigidity and inability to compromise was so frustrating to me the dispute would go on for days.  I had been brought up with the attitude you eat whatever was put on your plate or go hungry! I wasn't very sympathetic!  That was until I had children!

Easy job with our 'Lil' she would try anything, hardly any resistance and loved veg!  I became quite complacent when our 'Bob' came along that was until I stopped breastfeeding and tried to bottle feed him.   Ewww icky baby! Projectile everything...and I mean everything, everywhere... I didn't know one small baby could hold so much.  He must have been holding onto more than his own body weight....Poor mite he suffered dreadfully with eczema and asthma, and ended up only tolerating baby soya milk.  By the time he had reached solids and beyond we had a limited palate of taste  - weetabix or ready brek, chicken nuggets, loved the taste of fromage frais though we had to be careful not too many, raw carrots if we were lucky, bread and butter, sultanas (they were 'sweets') and if we were in the mood mashed potato.  Over time we have added to our list but we are not experimental and have been influenced by Mr AUTYnary's own food issues.  

Our 'Bob's sensory issues include food smells - that’s tricky to deal with when your 30,000 ft in an airplane and he's screaming he wants to get off!  'Bob' can't abide anybody eating in close proximity so eats on his own even on Xmas day too! We don't seem to have an 'off' button either so the consumption of a treat, biscuits say, can go on until we have eaten the entire packet in one sitting!  Quite recently I entered the dark hole that is 'Bob's room only to find the empty packet 500g packet of sultanas hidden under his pillow.  I'd only bought them the day before!  I have tried to ask him why he does it but he gets agitated with me, so I've just accepted it one of his 'things' and I will just have to watch him carefully.  Pretty difficult though, we also can be very sneaky, and 'Bob' has developed KSM - kitchen stealth mode!  So think of the theme tune to the R Whites Lemonade ad...secret lemonade drinker.... we've got a secret kitchen raider!

'Bob's medication for ADHD doesn't help; it suppresses appetite, so when it's worn off he's got the munchies.  I cook most meals from scratch because I'm fully aware of the necessity of five a day, but it’s tricky when you have a child who has so many issues with food.  Until you start to really think about it, I didn't pay much attention to how much these issues control our lives.  Mr AUTYnary and our 'Bob' don't seem to have a food clock either, so if left to their own devices, well quite frankly, they don't eat!  Our meals out depend on whether their menu contains cheese burgers! Or how close the tables are! Our 'Bob' has cooked at school under supervision quite successfully, but when we've tried it at home he is reluctant to follow recipe, or has this urge to be creative!! Usually part cooked with some decidedly dodgy mix of ingredients.  When I ask him about it, his response is that he just wanted to see what they would taste like....think he's been watching too much Heston Blumenthal!  He was quite keen to get his hands on some liquid-nitrogen....the answer was NO!

So as 'Bob' moves into adulthood I take a long hard look at my Husband and our foodie past, because within it is my sons foodie future.  Can I change it, not likely but I've learnt lessons, ways of coping and dealing with the anxiety, a life of strategies and hope, hope that at some point repetition will pay off and he can remember to eat breakfast before 10!

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!