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.

When Life Gives You Lemons.........................................

When life gives you lemons, suck hard and wince!!!! Life sometimes doesn't wait to be invited to stop, it naturally puts on the brakes and you find yourself ploughing into the back of the person in front of you!!

This last month we had our 'Bob's review, new medication,  launch event of the Parents Forum, developing 'Bob's revision techniques for GCSEs, and lots and lots of SEN information to read.  I have chased my tail that many times in the last four weeks and flown by the seat of my pants, I should be wearing my knickers over my tights and a red cape!!  Not that I am saying I'm Superwoman, far from it!  I think SEN mummies wear red capes all the time, not too sure about the knickers though that would be above and beyond the call of duty, and very bizarre!

I have dealt with child and adult meltdowns for a variety of reasons; some completely off the wall and others with good reason, and I have had to hold my hands up and take responsibility for my own actions.  Uncomfortable, yes! Necessary, yes! Life changing, you betcha!

I have had some incredible conversations with some incredible SEN parents who take Warrior Mums to another level.  Inspiring and touching, making me realise the need for parental support can be such a lifeline for so many families, and such a rewarding thing to be a part of.

I have reached into my own emotional suitcase more times than I cared for this last month, know it still hurts, but I'm able to carefully put it away until the next time.  I have struggled to know when they all need to come out and come to the conclusion that whilst they are safely boxed away they can all stay there a little bit longer.

SEN life is changing for so many families, and it's ramping up at a right rate of knots.  Awareness and readiness are going to be crucial to successful implementation, there's no stopping the world this time, it's ploughing its way through into September and beyond!  I truly believe in working together, the new buzz word is Co-production and its threaded through the new SEN Code of Practice.

SEN parents need to be at the very heart of these changes, and involved in the delivery of services for their children and young people in equal partnership. Our local authorities need to realise that although they may have the expertise, we as parents have the knowledge of our own individual children and that is invaluable! Parents as Partners; Working with, Not to!

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

What Have I Done With My Life?

I do wonder some days what goes through our 'Bob's head.  I mean he does come up with some weird and wonderful ideas but this one came from left field.  As most of you gather our conversations usually take place in the car to and from school so don't be surprised this one happened after I had picked him up.

'Bob' "I've been thinking..."

Mum "That's dangerous!"

'Bob' "What have I done with my life?"

I'm trying not to avert my eyes off the road but one eyebrow lifting stare to the left is required at this point...

Mum "what are you talking about, you are only 14"

'Bob' "well, I mean I haven't done anything I can remember"

Mum "you've done loads of stuff, you've sat in the cockpit of the concord, been on a train simulator at the engine works, been on lots of holidays, building a plane in the garden” Yes that last one is real!

'Bob' "yeah but what have I done with my life, I need to start thinking about my life...”

How do you respond to that...? I mean I ask myself that question all the time self evaluation doesn't come easy.  I'm hopeless at it.  I'm curious to see how he does manage it.  For 'Bob' the inability to make simple decision is problematic in everyday life so to make such huge whoppers for a life plan is going to be interesting.  His mindset and latest obsessions tend to dictate what he and we do next because unwittingly our lives follow his. Our routine for everyday tasks is firmly set, clothes in set order, when and how we eat breakfast, the morning constitutional, even down to the contents of our lunch box doesn't change day in day out.  How is this young man going to build these into his life plan? Quite simply that is his life! Just because he does things quite rigidly and methodically doesn’t mean it's wrong. Frankly, if life was that orderly most people would find that they have more time on their hands.  Without him realising he gets time management down to a fine art.  It's me that pushes those boundaries.  I'm the one flying around by the seat of my pants! Don't get me wrong I'm not scatty all the time.  I love lists! And boxes and a home for everything.  Maybe he's got something we could bottle!  I still have to make the decision about which clothes get laid out, the contents of the cereal bowl, reminders about cleaning teeth and washing his face though.  If you asked him coco pops or weetabix he would point in my direction “she’ll tell you” would be his response.

Ah and then we have the inability to accept change even if it’s in an orderly fashion.  It causes unhappiness and anxiety which can reach astronomical proportions verging on exaggeration. Then we get the shut down so nothing gets done.  Too many obstacles get placed in the way, and you might as well say goodbye and 'san fairy ann' to sound reasoning and logic! And then we stall!

OK he's 14 some may say too young to be thinking so far ahead, should be enjoying childhood! We don’t have that luxury of time at all because everything takes an age to plan and because of those dreaded obstacles it could take us until he's 40 to get where he wants to be.  'Bob' has so much going on in that little head of his, so many ideas, dreams, lives he wants to live I don't want him to lose that spirit in the process.  We are here to guide him and help him to achieve them; some are so outlandish; at the moment he is planning on buying his own island and creating his own country!  Now you and I know that it's not that straight forward, but in his head it is.  Mr AUTYnary and I will go along, helping him find out information, even create his own family crest.  Knowing all too well that at some point we may have to bring some of those ideas down to earth with a bump!  I want him to embrace that entrepreneurial gumption, I want him to have those opportunities that could see him reach those dizzy heights of success, and I want him to have those chances!  Even if it means I have to don on a life jacket and climb into a dodgy looking motor board dingy, travel the treacherous Irish Sea and climb into a tent on some windy remote uninhabited island off the Irish coast just to find out that setting up your own country might not be a good idea after all!

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!

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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 www.savette.com  “...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!