"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!

Nobody's Perfect!

I am thankful this morning for heavier traffic on the road home, it means I have to take the long way back from school. The radio is on but I don't hear a sound.  I'm concentrating on not crying because the guy in the slow moving lane next to me is staring intently at the car, not too sure whether he thinks he's going to get in a bit of car flirting before the office.  Not with this lady your not!  Today I am having my blip! STOP the world, I want to get off day!!

I don't have them that often but as a mother you rarely have time to think about stuff other than the here and now.  Certainly been given food for thought from my family this weekend, and I'm feeling the after effects. 

Yesterday should have been a very proud Mummy moment.  One delightful memory that is locked in time that you find you boast about when meeting up with people you haven't seen for an age.  I may well do that but certainly not with the same enthusiasm.  You see our 'Bob' was awarded a Subject Award for Science at his school's presentation last night.  In Year 9 'Bob' managed to jump from the lowest set to the top set in one year, now that's an achievement in anyones books but 'Bob', not only on the spectrum and ADHD, is Dyslexic.  He has come on leaps and bounds but it is always a contentious issue, and he has already identified this may stop him from living his dream of becoming a Pilot.  Autism kicks in, ADHD kicks in and the combination does not make for comfortable association.  

The school may well have had their arrangements working like a smooth oiled machine, but for 'Bob' he didn't know what to expect; There wasn't even time set aside to run through with him what he needed to do before the event, so he WOULD know what to expect.  I felt very let down and all I can say is that meeting on Thursday afternoon, well I've added something else to my list of discussion points.

And to top it off our 'Bob' also happened to have his appointment for his 2nd EEG that morning.  The anticipated demand of the day just gripped my Son all weekend, physically and mentally.  I had complaints of feeling unwell and headaches. The reluctance to engage in any external activity fed the anxiety so we just gave in and allowed 'Bob' to become engrossed in his fantasy life on the PC.  The slightest request would trigger an outburst, I have been elbowed, prodded and punched this weekend.  My Boy does not normally have angry physical outbursts like that.  It may be we never see this on a regular basis because of our meltdown management, or it could simply be our life generally does not herald multitudes of social engagements. It was unusual behaviour!

It's not just 'Bob'; I have an overly stressed and tearful final year student, desperately juggling student and work demands and a Hubby who is pacing the floor and becoming incredibly anxious because we have a plasterer in the house!  A situation very much out of his control.

At this point I am folding my arms around my head in a tight self head lock.  Oh there's no point in that, my blip in life will still be there.  I just need to claw my way out of this hole I've put myself into.

The lady in my life Mrs W, who covers my back, who picks me up and supports me when I can't hold myself up, the one who knows when to take me home after I've had one too many grape juices sent me this 

My Xmas Pressie

And the support from Twitterette's is fabulous!  I am going to put on my virtual armour; Might be a little bit clunky; And if you hear a clanky clank It might just be me following you down the tinned veg aisle in ASDA.  So for the next couple of days I will cover up, lick my wounds and remind myself I cannot create 'perfections' in my family's lives...... Who am I kidding I will keep doing that just next time I'm packing the tin suit!!!

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!