Monday, 30 September 2013

This Wall Was Not Built In A Day

Another proud Mummy moment!  Our 'Bob' has been plagued since the beginning of term by one child in Construction, I mentioned him before in Hey Ho No 2 blog the kid with the Lego!  The attraction to irritate 'Bob' has increased over the last couple of weeks and 'Bob' is desperately controlling himself in his presence. We have been working really hard on self restraint, reinforcing strategies to empower 'Bob' to make good choices when confronted with people who are, quite frankly, pushing for a fight!  This usually happens in the car on the way home and has to be completed by the time we get back because I have exhausted his attention span.  Though he's probably sick and tired of listening to "that woman...!" this seems to be his current reference about me.

I'm not saying our 'Bob' is an angel; he can be equally annoying and yes he does like to be right ALL the time.  He struggles when he believes there has been an injustice, and that can happen quite a lot some days. God help you if you cut us up first thing in the morning, or dare you to take a step off the pavement before the green man has appeared!  I'm not lying It's a task to bring him down to level where we can work on reasoning.

The fact is this is a brand new subject, and our 'Bob' has been really trying to find his feet.  He loves it though; finally some real satisfaction with immediate positive results.  You would not believe it they have to build little mini bungalows; I mean this is absolutely fab!  It's got bricks, pipes, a sink and even a little roof!! The whole shebang!  For a 6 year old 'Bob' this would have been heaven; for a 14 year old 'Bob' this means possibilities...

He jumped in the car the other day, beaming from ear to ear, very chuffed with himself clutching a piece of wood.  It got shoved right in front of my nose..."take a look at that joint, Sir says this is brilliant and I got a distinction..." Wow! On closer inspection it was a small corner joint made out of wood carefully joined together and sanded as smooth as a baby's bot! So to honour his effort he gave me permission to photograph his joint for you all to enjoy...

And to top it off, ‘Bob’ has been mithering his Teacher to let him build his own bungalow since the beginning of the school year, well, he got it! Only half a bungalow but he’s happy enough, it's up against the studio wall and it does bring new challenges but hey he's on his own.  Stay posted 'Bob' says I can update you guys on its progress.  Hold on to your hat's this journey is going to be fun! 

Sunday, 22 September 2013

Just One Of Those Weeks......

I can't believe it's been a week since my last blog post... I have been meeting myself coming backwards this week!  This week has been one of vision, empowerment and achievement, disappointment and anxiety, intolerance and obstacles, pain and joy!

In my quest for SEN knowledge and a keen interest in meeting other parents locally, I joined the Parents Forum three years ago.  Initially, I went along just to find out what was going on in our local authority as most of you are familiar with local authorities REALLY don't like SEN parents getting to know too much! Crikey, if we knew too much we might see more clearly their short comings!  Through the meetings I became aware that I did have more to contribute than I first thought.  I'd spent years trapped in this emotional bubble, and trying to find that even keel, trying desperately to balance that see-saw of our life, that I lost sight of who I was and who I had worked hard to be.  What I found confusing too was the 'who I had worked hard to be' because realising that who you want to be is an ever evolving situation can be unnerving, a little bit scary and I was treading unchartered territory.  Could I possibly have anything to give or share? Do you know, and I can say this now, YES I DO!

I'm really passionate about SEN parents and their capacity as an entity, a united voice to influence change.  I've participated as a Parent Rep on local authority task and finish groups, third party steering groups and parent led visioning events.  I started off being very conservative and reserved, taking a much secure position of just nodding and listening.  I was struggling inside to have that inner confidence that 1. Had I anything relevant to say, and 2. That I would be heard.  Stepping over that line came as a bit of a shock to me, I'd had a really crappy week with our 'Bob's anxiety and a truly fed up with the attitude of some people, So when asked whether parents might engage with a new process I just let rip!  Not in a nowty way, or angry outburst kind of way... I merely pointed out quite honestly and calmly the impact of continual assessments, the tiresomeness of repeating your child's history to half a dozen practitioners and the endless filling out of forms, etc, etc.  I tried to convey what truly it is like on the front line of SEN parents, warts and all!  Letting them know we don't what pity, we want answers, we want compromises, we want choices and most of all we want respect and a voice in the decision making of our children's futures!  Shocked! You bet I was, more so because they all listened! I wouldn't say now I have a Rottweiler reputation per se but I don't hold back and will ask squirmy questions.  Parents want to be able to make informed choices, not too much to ask!

So this week was our second Visioning event at the forum, I just love these sessions.  They get you fired up, enthused and above all give you confidence that things are achievable.  As I plan to take another step over another line of uncharted waters, I look back at that day just to remind myself that I didn't get hit by a bolt of lightning, and the ground didn't open up to swallow me! 

I was reminded also today by another mummy blogger  “...we just take everything for granted don’t we and forget us as a person and just see ourselves as mums”... She is right; we all carry on day to day, tackle those daily battles and endless chores, and most cases with no thanks! We strive to do the best for our children, we battle the small ‘uns and big ‘uns, we win some we lose some but we still get up the next morning to start it all over again.  Sometimes we need to remind ourselves that as a person we do some remarkable things every day, and it may be you managed to get your little star to eat a small amount of carrot, or placing a Thomas the tank engine sticker on the toothbrush means your son might put it into his mouth today and tomorrow he might just brush his front teeth.  Every day we are remarkable people, living a remarkable life with some remarkable children!

Sunday, 15 September 2013

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!

Tuesday, 10 September 2013

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!

Thursday, 5 September 2013

Hey Ho No. 2 We Are NOT Going To School...

Boy what a difference a day makes!  My last post was all about the first day back and I seriously thought that we would at least get to the end of the week until our first blip! OMGosh! Smack me in the face with a wet fish, twizzle me round and kick my derriere!  It transpires we couldn't get past the second day without an monumental, rip-roaring, completely lose the plot outburst.  Our 'Bob' saved this one just for me when I picked him up from school yesterday.  

It's moments like these that the complexities of having high functioning autism and ADHD are brought home, and I am reminded of the internal war he suffers.  Initially we were told our 'Bob' had Semantic Pragmatic Disorder and I scoured the internet to find out as much information.  I was like a dog with a bone! I had to do something, didn't know what, but something.  My emotions were trying to creep out of the suitcase, and the more I researched the more power I had to push them back in there.  In my mind I was charging right up to the gate, hammering on it, slapping my chest then gesturing with my hands " C'mon bring it on!" just like the gangster films.  If I'd known then what I know now I would have saved that one for later.  I used to sit in the dark with only the light of the computer screen illuminating my tear sodden face, because the more I read the more I realised that this wasn't just a blip in our speech and language development whatever it was it was going to be life-changing.  You all probably wondering where Mr AUTYnary is? I'm sure this will resonate with some of you out there, the bucket of sand was more inviting!  I knew my journey for knowledge or anything else relating to our children to be honest was going to be a solitary one.  What I didn't realise was how close my son and husband's little quirkisms were and how by learning more about our 'Bob' did I learn to understand my husband.

Within 2 years we had gone through Semantic Pragmatic Disorder, Autistic Spectrum Disorder, and then to Asperger's, and our specific learning difficulty - Dyslexia thrown in for good measure! By the time our 'Bob' was 9 yrs old we managed to add ADHD and the diagnosing Consultant decided because 'Bob' had developmental delay in speech it was not Asperger's but High Functioning Autism.  Confusing to say the least but my dog and bone attitude meant that the acquistion of information at the time was top priority.  I had to get my head round it all so I could help 'Bob'. 

Not that I was much help yesterday.  The incident was simple - last lesson of the day, one child winding up our 'Bob, questioning about friendship with girl (who I might add has been one of two friends he has had since the beginning of secondary school that 'get him'), 'Bob' does not want to answer (because you just don't!), pick, pick, pick throw a piece of lego at him and BOOM! Mum arrives and we start.......we go on about how it's always him they pick on, nobody listens, it's not fair, nobody punishes other people's bad behaviour, he always gets the blame, and then for the real cruncher, "It's all you and Dads fault I have this autism and ADHD", "your the one's who have given me this cell", "ADHD won't let my brain calm down" and "Autism and ADHD stop me from fighting my own battles".....and we went on, and on, and on...  

I try the calm approach, trying to reassure, trying to remind him about discussion we had about other people and how they treat us, and that some children find that once they get a reaction from you feel that they can do it time and time again but more importantly how do we control the situation when this happens....I pulled out everything from my mummy armoury....Could I comfort my boy not a cat in hells chance.  I was driving while this was happening, heading for the motorway for a little diversion, I hoped it would work because I was running out of ideas!  Our 'Bob' was firmly told that the conversation would have to stop because I was driving and I couldn't concentrate on his issues and drive at the same time I would have an accident.  Ahhh silence!! The rule card played off.  

I took him to a shop, many will say not a bright move because we don't do supermarkets, but it worked.  We bought our items, we grabbed a coke and some fries, went to get in the car and this young man walking out with me says
"Mum, I think I've calmed down now"

"It's my ADHD that makes me do that"

 "I think my outburst was because it was the end of the day and my tablet had worn off" "

I found myself having a moment... my goodness I never thought the day would arrive when my boy would be able to make a complex analysis of his own behaviour and attribute it to his condiiton.  My word our 'Bob' has started his journey into transition..

Tuesday, 3 September 2013

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 idea he doesn't want to talk about I just get a grunt!

Sunday, 1 September 2013

It's My Anxiety and I'll Cry If I Want Too!

It's been one of those weekends.  I've got over my first blog nerves with the help from another super blogger, still waiting for the bubble to burst to be honest, grappled with my own insecurities because I hadn’t received any comments. Y'know the ones, everybody is too polite to say anything or it wasn't bad enough for anybody to take the time to slate it.  So off I went to seek validation from those who know me so well and love me.  I thought to myself  "these guys will tell me how it is, I hope!" They did positively.  Phew! Though one response from the green-fingered Mr W caught my twinkling blues "...trying to leave a comment on there..". Hmmmm, let's take a look at this baby then.  Several hours later, I had my very own meltdown, felt like an absolute numpty!  Nobody told me you had to switch it on!!

So if you feel the need....go give it a try, I'm waiting!!!**cheeky wink**

As I said, one of those weekends, the lull before the storm that is going back to school! I ALWAYS leave it to the last minute, my thinking behind it; it only leaves days to cause major anxiety meltdown!  Our 'Bob' has over the years finely tuned his meltdowns, we have had the screaming in my face, throwing himself on the floor, finding the ability to launch the most minute missile and make it hurt, and we have had the hours of sobbing and the relentless chunnering to name but a few.  So our latest is to become VERY LOUD, critical and we GO ON, GO ON, GO ON.

Our antecedent - the dreaded school blazer. Our behaviour - firm resistance.  Our consequence - haggling.  You may well ask! My son has got haggling down to a fine art.  In order for us to even attempt the rather crowded store, we haggled a one size one try, so choice of size mattered.  Did I need other stuff? Yep you bet your purdoody I did!  The queue was the longest one I have ever seen in there, and by the looks of the other parents, they had the same idea too! We lasted 2 minutes, one choice, quick try on, and Mr AUTYnary and Our 'Bob' were exit stage left. Leaving me standing on my lonesome.  I did have a little chuckle to myself, as some poor bloke had quite clearly been sent by the wife with said child in tow - mission school uniform.  Bless him he kept taking pictures of different sized blazer's on the child, then talking to mobile, taking it off trying another one on.  All this whilst standing in the queue, now who said men can't multi-task!

 I finally get out and go to seek out Mr and Master AUTYnary, where are bloomin' idea! Gone! By this time I am really cheesed off.  I'm wandering up the street and who comes strolling round the corner; you guessed it Tweedledee and Tweedledum!  Looking very pleased with themselves, our 'Bob' asks for £1.50.  The pair of them had been in the charity shop and had found a lock for the den.  Do I dare mention at this point we need a new pair of shoes?  Nah let’s get the charity shop over and done with.  Besides I knew the response.  The suggestion of going into a weekend packed shopping centre just created an almighty kerfuffle, and that was just the senior of the pair.  The upshot, shoes from last term are in reasonable condition so we are having to change the laces and give them a good polish, school bag is still relatively hole free and we can't possible choose one because someone else might have the same and it would cause confusion, so we don't take the chance! I get "Shsssh'd" and "don't embarrass me" "What are you on woman?" "You're making me anxious!”  So why is buying new every school year important? Is it for me or him? On reflection I'm the one who is concerned he fits in and doesn't stand out anymore that he already does, I'm the one who is conscious he dresses like the other teenage boys because somehow he will be more accepted...who am I kidding!  He just wants to be secure, comfortable with what he knows, he has anxiety about the return to school and all I'm doing is making it worse.  Lesson learnt, stop waiting for the last minute, be smart, change my tact and listen!  He's not a young child and I need to remember that.