Monday, 14 April 2014

"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!




Sunday, 30 March 2014

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