Tuesday, 8 January 2013

Yes...but is he as bad as rainman?

Now, I've never been one for competition. I didn't pursue my dream of becoming a famous actress because the scene was too competitive for me! I guess I've never really lived what others would consider a "normal life" so that my daily movements couldn't be compared to others. So no, I don't like comparison or competition.

And yet I find myself in a strange race at the moment. I can see it taking place all around me and I can feel myself being buffeted along to the start line. I'm gonna call it the "rainman" race.

And it's between parents of special needs children.

Firstly you've got the spectrum saga!

High functioning, low functioning, shite smearing, non verbal, low functioning communication..aspergers, autism, learning difficulties, special school, mainstream...fight fight fight! For some it's just not enough to accept your child is the way they are. They have to compare them to other to justify their own accounts of them. "your child is aspergers, well that's not autism" "your child can talk? Well they're not severe then" "they aren't bad enough for special school!" "if they're in mainstream that doesn't count as disabled"

I read another blog last week and the comments were a bitch fest of parents trying to 'out autism' each other! Those with severe children telling those with aspergers/high functioning that they had no right saying their children were disabled. Those with high functioning critising those with severe for feeling sad about their child's condition. Someone saying that unless your kids smear their own crap they weren't severe....it was utterly horrendous to read. Just tearing strips of each other and disrespecting the mans emotion fuelled blog for their own reassurances that they had it worse than anyone else.

The disability duel is a hard one to talk about. But in one corner you have the visible disabilities and in the other corner the none visible disorders. I'm gonna be brutally honest and say that at my worst times I've uttered those words. If only they had a visible disability...a wheel chair, physical signs, anything to make the judgement of others go away. I'm sure for those with a visible diagnosis this is really hard to understand but the judgement of the public doesn't rest on your shoulders. People don't question the parenting skills, the behaviour, the lack of social awareness of a child with visual pointers to a disability. You don't get crack pots claiming they can cure your child by stopping them eating bread! but then I'm sure you get other prejudices that I couldn't possibly understand.

And this is what I hold on to. I've said it before but your issues are all relative to your life, no one else's. How severe your child is is, in my humble opinion, relative to how well they function within your life style. It's not as basic as can they talk, make friends, be aggressive, control a meltdown, stim or any other measuring devise people chose to use. If you feel they are severe or they are high functioning...they are..in comparison to nothing else except your own feelings.That's it. It's pointless comparing them to anyone else, or trying to prove you have a carbon copy of rainman. Your child is your child. And though I think it does the disorder of aspergers a disservice to lump it in the same category as classic autism, as its classification as mild autism undermines the problems of living with the diagnosis who am I to say that I would cope any better with a child who is considered by others to be high functioning. I know parents living with far more aggression and violent outbursts than me from a child classed as high functioning. Dealing with a child who functions perfectly well at mainstream but loses it every time they come home. 

Simply try to live your life and not compare your problems, your child's symptoms and the challenges you face daily to anyone else's. We could spend our lives apologizing for not having the bigger problems of others, critising those who are finding life hard, questioning peoples judgement or feeling about their own child or judging those who don't see things from your perspective. Forgive them. They are not living your life and you are not living there's. It is not your child, it is not your business. just like its not their business how you interpret your own situation.

We have enough to deal with trawling through our own crap, why compare your pile to anyone else's?!


Unknown said...

A woman after my own heart xxx well said. I too have said the same thing "If only he had a visual disability". I know I should never have said, thought it, but when he was younger & even now, when he has a fit at the bus station or in town, I feel the burning eye syndrome & have heard people say " tut control that bloody child".

Unknown said...

Also just to add, whilst away in Whitby for a few days, he found a chip tray & threw it in the sea. Some chap threw it back at him saying " you wouldn't like it if I threw rubbish in your garden, take it home with you". The polystyrene tray wasn't even ours! He only wanted to see if it floated.

Anonymous said...

As they say you have to walk a mile in another person shoe's before you should judge (well something like that i think) I will be honest I have judge in the past and now in there shoe's i see it so differently. The question of who is worst off in a sense, can never really be answered. I personally think im lucky, i have a son which is still to small to be diagnosed for definetly, had had lots of test and score 6 on the ados test if he had tested 8 then we would have had a diagnosis,BUT whey before all of this he suffered seizures i have seen him at the worst and to be honest give me autism any day, Im lucky in this way, i lucky compared to other parents, thats the only way i accept what i have been given to deal with, and i do deal with it every day, every day is a struggle and a fight espically when he's so talented at masking his behaviour at school x

mama said...

thanks for your comment x sometimes its best to simply say to yourself their judgement is a reflection of them, not of me or my family..atleast thats what im trying to do! x

mama said...

thanks for commenting x you could break your heart at some of the struggles other families suffer but as you said..we all struggle and watch our children struggle with whatever disablity is in our family. you just have to do your best and whats right for your child..none of us know where this path is going xx

mama said...

thanks for your comment x sometimes its best to simply say to yourself their judgement is a reflection of them, not of me or my family..atleast thats what im trying to do! x

Ken Upton said...

This is good...what am I on about...all your blog entries are good!! I have to say though, and probably because of my professional experience, that I do feel the need, when adding status updates on facebook, to make allowances and apologise to other parents who have children who's needs are more severe than my daughter's. I dislike with a vengeance people judging others and I don't want people to judge me or my family. I respect wholeheartedly that some families have been dealt a real heavy blow and that I, with a child with dyslexia, should be grateful that it's not worse.

The fact remains I love my daughter to bits and I lie awake praying this stupid dyslexia would just piss off but yet convince myself that it's ok because there are other families much much worse off than mine.

There's also the use of the descriptor 'mogul children' I guess referring to 'normal children' or children without SEN. Not sure if I find this insulting or not but I don't like it.

I'm probably ranting now :(

Keep up the good work miss x

mama said...

dont feel you have to apologise to anyone ken for the struggles you and your family face in comparison to others. you are facing daily challenges just the same as any other family so dont excuse the fact that you want to express how that feels or that your special needs journey is not as important as everyone elses.

and moguls ken? do you mean when i use the word "muggle"? its a reference to harry potter, where it is used by jk rowling to disquish between the characters who live a certain way (with magic) and those who live a different life style (muggles or non magic folk). its a term of endearment in the book and i use it to show the difference between my main characters and those who dont live the same way as we do.

its a concept many asd kids identify with, that they are in their world of hogwarts and there are those who live outside that world, the muggles who couldnt comprehend how the hogwarts world is. it has inspired many autistic kids to write fan fiction as they can understand that moment of having your differences explained "youre a wizard harry!". even jk rowling references this similarity and describes many of the characters as having asd traits such as hermoine and luna lovegood.

mainly i use it to avoid using words like "NORMAL" and NEUROTYPICAL which implies theres something wrong with my children in comparision to other kids. why must i refer to them as normal which by definition means my children are what, not normal? there must be a definition between the two when im writing so i would rather use a term that simply implies one group live one life style and another live differently. plus im a proper potter head!

no offense meant ken, you know im not like that! i aint from slytherin!

Ken Upton said...

Thank you for your explanation Donna; makes sense now:- no offence taken x x

ummi said...

Well said! I personally believe that the people who are describing those who need to say your child is not autistic or your child is nor disabled are in fact in great pain. That is the reason why they are engaging in this kind of crap debate. They are just keeping their minds busy to forget for a minute about their realities.

Louise Parfitt said...

Just caught up on your blog posts, and this post times a million is something I really wish parents and carers would realise!

Bright Side of Life said...

Hi. I am new to Britmums, therefore also new to your blog. I get what you are saying 100%. Good post.

Mary De Bastos said...

My son isn't even 2 yet and some "friends" have taken it upon themselves to discuss with me that they think Sebastian has autism. Wow. Especially since they don't ever even spend any time with him. Hurtful doesn't even begin to describe my feelings. Not because they thought he had autism, but that they thought I wasn't doing my job as a mother and they had to "tell me so I wouldn't be in denial" about it.

My niece is autistic. I have seen everything my sister has gone through with her and Sebastian isn't even in that scale. He looks me in the eyes, interacts with me and other children, he's very calm. He just doesn't talk a lot. He's learning 2 languages and "talking" can take up to age 3 to happen. He speaks. Just not a lot. Therefore my "friends" think he is autistic.

I am fully aware of everything my son can and can not do. WHY do these mother's think it is any of their business or right to discuss such a thing with the parent? It isn't their business.

I'm tired of Mom's trying to out smart each other. Who's kid is prettier? Who's kid talks more? Who's kid can play sports better? Just mind your own business and work with your own family.

mama said...

its this desire to meet milestones, to keep up with the baby experts and the endless comparisons that burrow right to the root of being a mother..its not for them to have concerns about your son just because he doesnt tick the boxes they live by..if it was their children would they appreciate it anymore than you do? i mean..whatever did the world do when it didnt have experts and milestones? it just oet children be themselves and learn about the world in their wonderful way x mommy knows best x

Looking for Blue Sky said...

I totally agree that the big problems that your child has are the big problems that your child has, they are not harder or less severe than another child. Comparisons are odious they say, and I HATE seeing the special needs community fighting with each other, we have enough to deal with already!

On the physical disability thing I also agree with you. And I'm speaking from bitter experience: everyone is lovely to my admittedly gorgeous 16 year old who can't walk or talk but has a fabulous smile. But there is no compassion or understanding or sympathy for my 11 year old son with aspergers when he 'misbehaves' in public. The things that people say to my face are just horrible..

lynne said...

OOh so glad someone else feels this way thought i was the only one. I used to run a charity support group for parents/carers of additional needs children /young adults. We always talked about the things our kids did but that was to give ideas and support to other people. Unfortunately we had one mum who always had to be worse than the others. We finally had to ask her either not to come to meetings or to only speak if she could help as it was disturbing to new people to listen to everything she said. Everyone else in the group used to share information advice and just generally help each other out but no she had to keep going till i finally had to ask her to leave. We all have problems with our kids at sometime in their lives whether they have autism or not and it help to talk to someone who has been there and found a solution rather than say ooh mines was worse etc so now i just close my ears and let them get on with it x

agapeautism said...
This comment has been removed by a blog administrator.
Corrie said...

Imagine if all this energy was spent on supporting each other rather than judging or competing. I have found the same behaviour from women (yes they are the main culprits) with my NT children, sleep is a doozy for bringing out the claws.

Anonymous said...

It's often so hard for parents who have a child who looks normal but then behaves in an odd or inappropriate (or embarrassing!) way. The high-functioning child may actually be at a real disadvantage because everyone expects him or her to fit in function in the neurotypical world.

Post a Comment