"I Hate This House!" - Sibling With A View

It truly doesn't matter how old your children are, or if they're on the spectrum or not!  If they've got a gripe the whole house knows about it.  Sadly, it is usually us mummies who take the brunt of the directed rage.  For other people looking in, a perception of the spoilt brat syndrome, or just a horrible, badly parented child is quite often a stereotypical conclusion.  Step inside the sibling world of a child who is on the spectrum and one who has ADHD, and try to understand how difficult it must be for them.

There's no blame to be had, but it certainly is tricky avoiding the feeling of guilt!  Our 'Lil' is in her twenties now and is 'Bob's older sister.  She's nearly six years older, and for those first six years it was just me, her and Dad.  A lot of the time it was just her and me, Mr A spent lots of time working away and we loved doing girlie stuff.  Every weekend would be girlie road trip, and we would go all over the place.  Even when she was a baby and I didn't drive, somehow we still managed to get out and about.

I recall the times when she was a toddler and I would be getting ready for work.  'Lil' would be sent back to sleep by the noise of the hairdryer, and she would just absolutely love to help me choose my outfit.  I never had any concerns about her development, she was way too smart even from being a couple of hours old, this baby was holding her own head up and being a right old nosey parker!  She didn't miss a trick!  If there is such a thing, she probably had an old head on young shoulders.  I know someone once told my grandmother the exact same thing about me, I was never too sure what they meant, but she is very much like me, probably more ways than she would like!

When our 'Bob' came along, it was quite easy to prepare 'Lil' for the imminent arrival.  She was a proper mother hen before he was even born, and where possible I would involve her in much of the preparation.  She loves her brother so very much, she might not like to admit it half the time because he's 'weird' 'a pain' and generally finds him irritating!  But don't all sisters think that about their brothers at some point.

She does not let Autism or ADHD influence her view of her brother, his behaviour, though sometimes gets a verbal 'thrashing!  I often wonder whether his behaviour held her back from inviting people to our home, and influenced her decision to only have a very small select group of friends.  I suppose when you've experienced a sleepover birthday party and your young brother pee's in your friends shoes, does leave you somewhat mortified and a little bit worried about the unpredictability.

There is a  part of me that has always been concerned that having an 'odd' dad and 'weird' brother, stressed mum may well have contributed towards how she sees her place in the world.  She has to have been influenced by the environment, no matter how hard I've tried to balance out 'normal' (whatever that may be) with the 'quirky'!

Have I ever questioned whether she is on the spectrum? Yep, and she has too!  I am sure she isn't, In my honest opinion she has been influenced by the traits, and yes, there are moments when you think that almighty outburst over something trivial or the inability to make adjustments for someone else's behaviour, or the orderly way we dispense our breakfast might just.... Then she does something else like seeking out a snuggle, or tells you she loves you, or asks me why I look so sad and there is the moment of reassurance!

Not always plain sailing though!  We have had tears before bedtime, she has hated living here on numerous occasions, 'Bob' gets away with everything, we give him more attention and the all time favourite, we love him more!  So far away from the truth, but for her it's real.  For us, we have to acknowledge it does feel real for her and we have had to learn not to dismiss, to be open to change (even though that in itself can be quite controversial), and more fundamental than anything else being able to just listen.  I can't tell you the amount of times she has pushed the boundaries for one's own gains, though, and she has been successful on several occasions.  Sometimes it wasn't worth sweating over the small stuff, it's hard being a sibling of a child with SEN and/or disability, and you have to pick your fights as a parent!

Then you hear a squeal, and this almighty roar of laughter, running through the house like a herd of elephants and you find that one of them has jumped out on the other, or they were tickling one another, or chasing each other around the house with Nerf guns or water pistols.  You find them collapsed in a fit of laughter on the sofa, and you smile, and for that split second you feel the warmth of a job well done.

'Lil' and I know that 'Bob' may not always be there to look out for her, not because he won't, but because he may not recognise when she does need him. I've got time yet to work on that one with him and no matter what 'Lil' says she will always have her brothers back.

I am so very proud of my daughter because despite how chaotic our family life is and what a roller coaster ride we've been on, she has studied hard, got some fantastic exam results, goes to University, has developed a good work ethic (she has been working part time in one job or another since she was 14), and has turned into such a beautiful human being with a good heart.

In honour of National Sibling Day which has just passed, our 'Lil' and 'Bob', through the tears, heartache and happiness, Siblings together forever!

OMG! I'm in a Book........ & To Wonderful New Friendships on Mothers Day

Look what arrived yesterday morning!  Seriously giddy as a kipper!  I'm in a book!  Eek!

Before I plucked up the courage to start blogging, and I do this quite a lot of the time, was viewing from the sidelines. There was the fantastic Wendy, who triumphed so much and blogged with such conviction on www.savette.com, and then there was super Jo, who's positivity towards autism is an inspiration over on www.mummyworgan.blogspot.co.uk, and then there was this wonderful woman Michelle, who pulled their stories together and like wings of an angel wrapped them into this safe haven of support and warmth, over at http://michelledaly.blogspot.co.uk.

I have to thank Wendy for her support and encouragement, and helping me find my confidence to write that first blog post.  I had absolutely no idea whether anybody would be interested in reading anything I had to say, with Wendy's help she made me realise that if only one person read it and found shared experience then it is well worth it. She probably doesn't know how much she has impacted on my life, nor would Jo or Michelle, we make comments on posts and retweet stories but not necessary say these words.  

Thank you ladies, and to all the other ladies out there who blog with passion, a huge Thank you, you guys do make a difference to peoples lives.

Michelle Daly writes this fantastic blog Warrior Mums, I stumbled across it, like most things, on Twitter.  There was lots of activity on Twitter one Sunday night, and I thought I would hop on over to find out what was causing such excitement.  Wow!  What incredible stories were being told and such inspiration.  I was truly astonished, that these ladies were laying bare such emotion for all to read.  I wept, I laughed and I felt their pain.  Michelle collaborates with these fantastic Mums, sharing their incredible stories, the lows, the highs and with some delightful photographs.  I do love a good photo!  

I don't know how it happened, but I was honoured to be asked by Michelle to contribute to her growing collection of super Warrior Mums' stories.  At first I didn't know whether I could do it, it wasn't the stuff about our 'Bob' that was the difficulty, it was talking about me!  Not many professionals ask about you!  There were a few tears cried over the piece, some raw nerves plucked but throughout the process Michelle was at the other end of the line.

When you read about Michelle, and I suggest that you get a copy of her book With a little help from my friends http://www.amazon.co.uk/Little-Help-my-Friends/dp/0957048734,  you soon realise what an incredible woman she is.  Amazon's information about the author "Michelle Daly was kicked out of school at age fifteen with a reference stating, “Michelle thinks life is one big joke.” She went on to work with children in residential care and in 1972, at nineteen, became the youngest single woman in Britain to obtain legal guardianship of a child; Marie, a seven year-old with mental and physical disabilities. In 1990, they moved to Ireland, a country she refers as her second home, where she home schooled her two children, Patrick and Anna. An advocate for children’s rights and people with special needs, she lives with Marie in Liverpool. Michelle has also written a book of fiction, I Love Charlotte Brontë, which is available in paperback and Kindle editions."

I can tell you so much more about this lovely lady; tenacity, fight, passionate, dedicated, courageous, gutsy, love, warmth, inspiration, brave and someone I am so proud to call a friend. 

Personally speaking, I had never experienced someone willing to fight so hard for a child, let alone one that wasn't related to them.  I'd experienced being fought over, never having anybody fighting for me!  I was amazed!

When Michelle mentioned she was putting together the stories to create a book, I don't think it sunk in to be honest.  I knew she was busy putting it all together and checked in every now and then to make sure she was OK.  Then bang! It's here!  

I will never tire of saying what a privilege it has been to be included in this book.  It's appropriate that all the proceeds should go to such a wonderful organisation MENCAP http://www.mencap.org.uk/ and what a lovely foreword from Jan Tregelles, Chief Executive, Royal Mencap Society.  If you only buy one book this year, please pick this one. Within it you will find a collection of truly marvelous, inspirational and amazing Mums, all different but with a common bond, love for our children and families!

To my fellow Warrior Mums, Cheers!  What a fantastic club we are in, loved reading every single story and so chuffed we are in it together.  To the Warrior Mums of tomorrow, can't wait for you to join us and read your incredible, amazing and inspirational stories.  To Michelle, Thank you.  You are one in a million, keep doing what you do best, being an Angel! Xxx

One last word; Thank you to all the readers out there, without your input these posts are merely just twittering from the front line.  

Much love and respect Justine xxx

Pop Pop Fizz Fizz Bang Bang.............

This week has been full of fireworks! And not the pyrotechnic kind either.  My word a certain Celebrity caused a right old ruckus in Twitter land and social media when her remarks on a certain well known radio station shot through the fibre optics like a bullet!  However it has raised the issue about support and parents, and is a hot topic of deliberation and debate. 

As many of you now know I'm really passionate about supporting SEN Parents but there was a moment in our life that I was like a rabbit in headlights and nowhere to hide.  I didn't know many playground mums and hands up I was quite new to it; the Childminder had done the school run before. I found myself shuffling in at the back and everybody seemed to have their own little group.  My Sister had moved into the area and my Niece started the same nursery but that did not detract that I felt I was the only one juggling slippy balls.  Well at the time they felt like dirty great big watermelons!  I was paranoid that I had the 'naughty kid' because our 'Bob' was always on that 'mat'.  The amount of times the hand beckoned from the nursery door and I would hear "Could I have a word!"  The art of eye rolling became my new party piece and I became a master of defensive.  If only there was someone I could have shared a thought, or bounce off ideas but since we didn't have a diagnosis nobody seemed to know where to send me.  So I'd hit the internet!

Every time I thought about our situation I would well up, behind closed doors of course. I knew I just couldn't do that in public or I would just completely lose the plot.  After us just plodding along on our own, I asked the Head if perhaps we could set up a group for the parents of children with SEN in the school.  She shot right across my bow and told me that they wouldn't want to draw attention to themselves and some of them didn't even recognise that their child had a problem!  Feeling somewhat deflated recoiled back into my world.  By some sheer coincidence a lovely lady moved into the area whose middle child started at the primary school and unbeknown to me had another child with Autism.  Whether the Head felt she needed to do a bit of back peddling I don't know but we were introduced and as they say in the movies 'makings of a wonderful relationship!'  Mrs S and I co-run our voluntary group for local children with high functioning autism/Asperger's and have done for a number of years.  Somehow we clicked and she is my Auty best buddy.  We know that each other will just get it no matter how daft it sounds or how intolerable it is; we step in each other's shoes.  Our relationship is really important to us both now.

We hear some horror stories about how parents and their Autistic children are treated, and it is down to perception and badly informed individuals a lot of the time I feel. Not being afraid to talk openly about your child's condition without worry of prejudice or ridicule is something we would all love to be able to do. That's so far short...

What I'd like to think is we can support other parents and ourselves in so many different ways. Don't think that the one nice comment you make to someone on twitter won't make someone's day, or fill their heart with your understanding because the truth of the matter is it probably will make their day.  We can't see down a phone line nor behind someone’s smile so never underestimate the power of united support.  Sometimes a smile is all it takes in the playground....

PS

I'd like to dedicate this post to a wonderful lady in Twitter land who supports so many people with her fantastic Warrior Mum Journeys michelledaly.blogspot.co.uk  Recently she wrote my story and by doing this I found support from so many different people.  I realised that no matter how far along your journey you are it's reassuring to know you are not on the path by yourself anymore.

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.

Drama, Drama, Drama!

Everyone loves a critic! Especially my son he usually is the critic. In 'Bob's quest to find out what he is going to do with his life he has decided to have a Plan B! OMGosh! Head in hands, shake head from side to side. Well he's gone from one extreme to another I can tell you.  Plan A was to be a super Engineer, fantastic pilot, leader of his own country and Master Lego Builder! Now Plan B is to say the least confusing for me because our 'Bob' doesn't generally gravitate towards the limelight by choice, it might unintentionally happen when he is trying to ram me with the shopping trolley in front of a crowd of happy shoppers!  So when he announced in the car that he wanted to be an Actor, yes ACTOR! The choice words were 'gobbed-smacked' and 'Well I never... .’  

We had tried a drama group without much success when 'Bob' was about eight years old.  It didn't last long 'Bob' was scaring the other children by running round in the opposite way and screaming in their faces. The sweet natured Drama Teacher was really polite but after telling me the second time how the other children didn't like coming because he was scaring the living daylights out of them it sort of put me off.  I didn't want to get to the stage where we were the ones asked to leave.  It was still incredibly raw having a child with autism, and my thick skin wasn't quite thick enough.  

'Bob' informs me he's doing this because I said that he needed to do other stuff!  The fact I said that months ago has nothing to do with it but we will go with it. I know it takes some time to process information but bloomin 'eck 'Bob' that's ridiculous!  I still worry about sending him off into the unknown, his behaviour can be so unpredictable (that's the ADHD) and he can appear to be such a Muppet sometimes (I can say that! I'm his Mum!).  Generally it can be OK until he opens his mouth and says something completely irrelevant or odd, then everyone identifies that this one is going to be tricky!  So very carefully I pick out a drama group.  Well actually I'm slightly biased because it's the local performing arts academy and I go there once a week for my 'get away from it' hour of self indulgent adult musical theatre singing class! I know the teachers, the layout, some of the children who attend and it's a really great family spirit.  Hey they've put up with me for nearly a year!  The only prerequisite was that he didn't want to do any singing like me. In his own words "I don't want to do that cat’s chorus!" Thanks Son, love you too!

Well we've managed two weeks and all is OK with the drama world. Fingers crossed! I really never ever thought we would embrace the world of 'Luvees' and 'Darhlings'.  I loved performing when I was a kid and I so wanted one of my children to follow in my footsteps and beyond.  Our 'Lil' didn't show any signs of that side of the camera preferring to be on the other side and creative in the fashion world.  It didn't even occur to me to give 'Bob' the mantel and resided that it would have to be shelved until the teeny tiny patter of grandchildren's feet!  There is hope yet... I can see it now "To be or not to be, that is the question?" "Well actually that IS the question...to be or not to be what?" Could you imagine how long Macbeth would take!

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! 

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..