What About Me?

Sibling arguments happen regardless of any neurological conditions amongst the children.  When a child is on the receiving end of their sibling's behaviour associated with an Autism Spectrum Condition which they do not comprehend, all out war erupts and mothers everywhere don their bikinis and high heels and walk around the kitchen with their 'Round 2' placards. Dividing attention between more than one child is not easy at the best of times.  When you have a child who needs more of a parent's time due to a disability, a sibling may feel jealous and resentful, especially when that disability is hidden and the sibling cannot 'see' why that child is getting treated differently.  Parents are faced with a difficult task, wondering how to handle a non-ASC child's needs so they don't ask in later years, what about me?  I am aware of these needs as, not only am I a mother of two boys, one of whom does not have Aspergers, I am also a sibling myself.  However, the situation I am in is very different to the one my Mother was in twenty odd years ago.
 
It can be quite startling when you realise that the diagnosis of your child with ASC is not necessarily the end of your search and find mission but occasionally it can be the beginning of many more.  When Harry was diagnosed two months before his sixth birthday it soon became abundantly clear he was not the first person in my family to have ASC but merely the first to be diagnosed.  Which is bizarre when you think that he was, at the time, the second youngest in my entire family.  A few months after his diagnosis, I attended my first Tony Attwood conference and during the course of the day my jaw dropped progressively closer to the floor as he 'diagnosed' several members of my family.  Whilst mopping up the dribble from my chin, for every comment he made, I popped the name of a member of my family next to it.  Just by the placing of one piece, a lifetime's puzzle suddenly made the family picture much clearer.

Whilst there had been obvious issues with my younger sister since she was very young, I was more than a little dumbfounded when the penny dropped that after years of referring to herself as 'mentally ill', Aelswith, was more than likely a fully paid up member of the Asperger's fan club too.  This discovery led to lots of feelings of guilt and also relief that I could now understand her, when for the best part of twenty years, I had not.  It also meant, as a mother, paying attention to the needs of my youngest son, Elliot, had to be pushed to high priority to help him cope with and understand being the brother of someone with Aspergers. 

Anger, frustration and sometimes violence are part and parcel of the negative symptoms associated with ASC.  When an ASC child is having a meltdown for whatever reason, a parent does not have the luxury of using Super Nanny methods of discipline, being sent to the naughty spot will result in the younger ASC child having no clue about what they are doing there and will proceed to headbutt walls and scream even more than they were before - I speak from experience.  Faced with the same situation with a non-ASC child, they would quite possibly be told to stop their unacceptable behaviour immediately, put to time out and be given a more severe consequence than their ASC sibling resulting in one very confused child.   A parent obviously understands why the rules of discipline have to be different, but the non-ASC child does not.  Siblings will see it as one rule for them and one rule for the other.

The same can be said for rewarding our children.  Every non-typical milestone an ASC child reaches is so huge we reward it with lavish attention.  A non-ASC child may feel resentful that their achievements are not rewarded as frequently or for seemingly minuscule efforts.  A non-ASC sibling will eventually become aware that family life and the attention they receive from their parents is all linked to their ASC sibling.  Outings are organised according to what the ASC child can cope with, parents attention at home may be focussed on the ASC child because of their needs at home, toys and possessions are ruined and all this time the non-ASC child is hiding around corners with a video camera recording evidence for the almighty tantrum that is waiting to explode Kevin style 'you all hate me, it's not fair'!   

It's easy to fall into the habit of making the ASC child's needs higher priority than their siblings and as parents we have to be conscious of this.  We may fall into a routine and adopt the attitude that our ASC child has no choice and needs us but our other children will be fine.  We may not necessarily realise what their needs are or we may simply not know how to help them.  Elliot, my youngest, has spent his entire life as the main target when Harry can't cope and up until recently, my focus has been on keeping him and Buzz Lightyear safe.  Recently, he has become more aware of the differences in his life to Harry and has been asking why he doesn't get the 'day off' like Harry?  And when I do have to take him with me to medical appointments, he wants to know why he's not going in too?   I am now very conscious of the change in his needs and how I can best help.

Talking to a non-ASC child is paramount, explaining age-appropriately about their ASC sibling is a necessity.  The more information they have to able to understand their sibling will benefit them as they grow older.  They need to understand that their sibling gets so much attention because of their condition, not because they are any more loved.  They need to understand ASC makes their sibling want to attack them for touching one of their toys but will happily chop off the head of their favourite teddy for no apparent reason.  We must be seen to understand their upset at this and not dismiss their feelings. 

We may find adopting the same discipline methods makes as much sense for the non-ASC child as it does their ASC sibling and will lead to less feelings of resentment.  Similarly we need to make the number of opportunities for reward the same for all children, but explaining to the non-ASC child that all children have different capabilities and, therefore, reasons for rewards are individual. Whilst we will always ensure our ASC child's needs are met, they do not always have to be met by both or either of the parents.  On occasions we have to allow for our non-ASC child to feel special, we may have to create these opportunities and we most certainly must allow for it  during moments of great importance in their life.  

The problem with family days out are that quite often, the day will be determined by the ASC child, and eventually the non-ASC child will get fed up with playing second fiddle.  Of course, a child's needs can be met and factored into a day if you know what those needs are likely to be in the first place.  But it often works in families with more than one child to divide and conquer.  Recently Harry got to spend all day with my husband Andrew at the Gold Coast 600 watching cars go round and round a track!  I meanwhile, thinking I had got the better deal, spent all day at Seaworld with Elliot letting him feel special by choosing everything we did, he was ecstatic.  So we started off looking at penguins. Then later we went to look at the penguins.  After that we went to see the penguins.  Next day when I took the two big boys back to the race track Elliot threw a massive hissy fit when he found out we weren't going back to Seaworld!  'Yeah, not gonna happen.  Special time's over babe, Mummy's hitting the beach with a book'!  I of course read two pages as my time was spent stopping Japanese tourists from running off with him for their photo shoots.  Note to all Japanese tourists, kidnapping is not the way to make a non-ASC child feel special!

Younger children simply don't want to feel left out.  Watching Harry have his medicine is seen by Elliot as Harry getting more attention and doing something special with Andrew or me.  Ironically, Harry hates taking his medicine and calls us all the names under the sun and thinks we have a vendetta against him because Elliot doesn't have to take it.   By including some strawberry flavour to some milk at night so that Elliot gets to take his 'medicine' has made him feel included.  Mummy likes to make it a family occasion and has her medicine in a glass with lemon and ice, with a double shot of medicine for those days when Harry tells me 'he knows I wish he was never born'!

Recent changes to medical rebates for those on the Mental Health Care Plan in Australia have resulted in the amount of psychologist sessions allowed per year being dropped from eighteen to ten.  Which is ridiculous when you consider Aspergers is most likely to be diagnosed after the age of five and the Autism funding available in Australia cuts off at the age of six.  Also taking into account, psychology is probably the most beneficial therapy for those with Asperger's, without it, I would be sitting in a corner singing happy clappy songs.  Which brings me to a way to combat the reduction of psychologist sessions.  Parents themselves can be referred under the Mental Health Care Plan, and quite frankly some of us need to be!  This way there will be a total of twenty sessions available which means the child with ASC gets as many sessions as before and gives parents the option to use some for a sibling.  Non-ASC siblings need to feel they are not alone and may need a professional to talk to them about how it feels to be the sibling of someone with ASC.  This will then combat the issue I have with Elliot seeing these appointments as 'days off' for Harry and he will get to have them too. 

Elliot will of course benefit from the fact that we actually have a reason for Harry's behaviour and, in time, we will be able to explain this to him, as like me, he cannot see his sibling's disability.  I know I talked last time about differabilities and being positive about Autism Spectrum Conditions, but when a person's condition affects their life and the lives of the rest of the family, with there being no explanation or useful help available, on this occasion it is fair to say it is disability.  Obviously, helping a sibling understand and cope, can be helped greatly if the parents themselves actually know what they are dealing with. 
 
The old saying 'if we knew then what we know now', I know is used by my parents, my elder sister and myself.  When real problems first surfaced with Aelswith, my physically disabled Grandmother had just moved in with my parents following a near fatal car accident and my Father was running a small business from home.  I honestly don't know how my Mum did not end up in Betty Ford, knowing what I know now about having a child with high needs, never mind the rest of what she had to deal with.  My Mum, I know, feels guilty about what she 'didn't' do to find out about Aelswith's condition.  I honestly don't know where she could have turned back in the early 90's with Asperger's only being on the verge of being a recognised medical condition, there was no internet and professionals  clearly had no idea and simply wanted to label her with an eating disorder, the disorder of the 90's.  We all knew what she wasn't i.e. anorexic or bulimic.  Yes she had ribs that stuck out and hip bones poking you in the eye but she was also very tall with legs up to her armpits that were slim but certainly not skeletal.  And yes we called her lots of names for having those legs.  She also ate crisps and chocolate for breakfast and her love of toilets was not due to her wanting to stick her head down one!  But unable to tell us what she was, she was stuffed full of prozac to help her panic attacks and sent on her way. 
 
I imagine it's difficult to be understanding all the time even when a sibling does have a diagnosis.  But when there is no diagnosis, the problems that creates in a family are phenomenal.  There were many occasions when I could have happily throttled my sister.  I was, at the time, an older teenager myself and fairly level headed for my age but I could not cope with the demands my sister made on my Mum, in particular, and the way the whole family life seemed to revolve around her.  At the time I was of course clueless about how debilitating it was for her and how powerless my Mum must have felt trying to help her.  In her teenage years Aelswith's anxiety and need for routine led to her not going anywhere unless she knew where every single toilet was.  My Mum literally had to plot her route to walk down to the town and go via every single public convenience so that Aelswith would leave the house.  And if she had to go home, she had to go home now or she would have a panic attack.  To get Aelswith out of the house and into a car my elder sister, Eadwina, and I thought we were helping by suggesting we took a bucket in the boot of the car!  On the occasions when we did get her in the car, it became a running joke to let her know 'we've got the bucket'! 

Anxiety has ruled Aelswith's life but where I once thought she was being selfish, I can now understand some of how she feels as Harry is so much like her.  But I will call her selfish when it comes to her career.   She enrolled on a music course at the Academy of Contemporary Music in Guildford where her classmate was one Newton Faulkner.  She loved every minute of this course but crippled by stage fright, after she qualified she became a vocal coach whilst Newton apparently went on to sell a couple of records...  First I miss my chance of going to the Oscars, now because of my sister, I miss out on the MTV awards! 

Aelswith is still fighting to have an official assessment, having been told at the grand old age of 33, what does she need to know now for?  Clearly psychologists aren't qualified to help anyone over the age of 20!  Whilst Aelswith will always be the annoying little sister with habits I may now understand but which still drive me bonkers, doesn't she deserve the right to know what she's dealing with?  Yes, it's too late for early intervention or for her family to have understood her when she was growing up.  But doesn't she deserve for us, and others, to understand her now?  In the meantime, however, Aelswith is available for weddings, funerals and parties.  Please send your booking requests along with a detailed map of all the toilets in the area.  Eadwina and I will provide the bucket!