Tuesday, December 29, 2009

A Rose by Any Other Name...

I'm struggling a lot lately, having to keep explaining the need for labels for my children. Its got to the point where I'm almost starting to believe the people who think I'm looking for things to be wrong, almost "wanting" there to be something there so I can slap a label on my child... It couldn't be further from the truth though. Of course I don't want there to be any reason for my child to be diagnosed with anything else, but in my heart I know that we haven't got to the bottom of my middle child's issues. Therefore, I will don my elephant hide and get her the private help she needs and if that gets her an additional label to wear, so be it.



Trying to explain the need for a label is exhausting. A simple analogy I use is that you have a cupboard full of cans, all with the labels missing. You try to figure out whats in there perhaps by seeing how heavy it is, does it slosh when its shaken, or is it solid. You can really only find out a tiny bit about the contents of that aluminium can without its label... Now stick a label on the can. Whats changed? The can is the same, the contents haven't changed one iota. All that has changed is now we can easily identify what is inside that can without the need to guess or shake it.

So that is the purpose of the label. To identify what is there. Its not a name, or a tattoo that has to be worn on the forehead of your child, but it is essential to get services and the help your child needs and deserves. Don't forget also that labels peel off and can be changed as appropriate if things change.

So where is the real issue that some have with the label? I feel its the stigma of old. Sure don't people label themselves all the time if its something they are proud of? MD, BA, Mrs, Sir, Lord.... So why not come out and say the real reason they don't like certain labels. Yeah, its the stigma, I don't want people knowing there is any mental illness/neurological disorders/disability (delete as appropriate) in our family... Ignoring and shunning the label however, won't change that or make the child neurotypical. It will just deny them services and help.

Munchkin got her label nearly a year and a half ago and in that time has obtained intensive intervention, home tuition and a place in a special needs preschool. Add that to the help she gets from us at home too and you see a totally different child to the one who presented a year ago. As my mum said to me over Christmas, whatever you're doing, keep doing it! She is doing fantastically and I know in my heart, that without the label we wouldn't be doing as well as we are. I just need to sort out my cans in my cupboard and get my middle can relabelled properly so that she too, can move forward....

15 comments:

Taz said...

Brillaint analogy, Petunia! Labels can be a very positive thing, and I've never been emabarassed about Button's. It does not define who he is, just why he is! xx

Anonymous said...

love the blog my second youngest is getting accessed now in jan with the help of the ot and speech pushing for it..the school would not send my son for accessment said he already had a label of dyspraxia what more did i want the child has been through enough why did i want to put more labels on him..i have to say my responce to the teacher wasn't very nice and told her that without these labels my child would struggle and i wasn't going to let that happen..how dare this woman tell me to be proud of how far my child has come and stop looking for another label ..i have been the one working with ot and speech since my child was 2 yrs old long before this teacher ever knew him he's 9 now and i have a 3 year old as you know with Autism some people just haven't got a bloody clue ...so you go girl you fight the way you have been fighting for your children and we'll all be with you every step of the way ...

kathleen

una said...

Great blog as usual .... I can totally relate to it - the latest was being told that my eldest was 'sweet' and thus couldn't have aspergers so I should ignore what the professionals are saying....I think you are so right to go and get further help for your middle child, you know her best and with your help she will achieve so much in life. The way I see it a label only opens up doors for them, as they get to understand themselves and get the help needed ...but for some reason so many people still see them as negatives.

popsie said...

excellent! petunia. i have this problem all of the time, i feel that people think i like having them labelled! the thing is we dont think of the label as the problem, just how others view it really x

Jen said...

Great post Petunia. I see our 'labels' as a positive thing, like you said, where would our children be without the help they are getting? I guess some people just don't 'get it' yet. Good luck for middle child, will be rooting for her:) Jen

Petunia said...

Thanks girls. I feel strongly about this issue as it seems to rear its head so often. Well done Kathleen on pushing for the assessment and hope it gives you the answers you need. Una, I laughed at your comment when they said that she was "sweet" so therefore couldn't have aspergers... My god, Munchkin can be the sweetest girl ever. They really need to look at the diagnostic tools they use. Not every child with autism or aspergers presents the same.

Popsie, thanks for the comment, had a look at your blog and see you are new to it. Are you on facebook with us? If you need any help figuring blogger out give me a shout xx

Andra said...

I love this blog as we have all come up against the 'why is it necessary to label the child'. I currently am being told by my parents not to tell anyone that our daughter is Aspergers as it could go against her in later life, I know they mean well but it is hurtful and as you say Tracy the stigma of neurological disorders or mental illness is still a taboo subject to the older generation not to mention the embarrassment they feel having a family member who needs help for it. This post strongly hit home for me today and made me even more determined to fight for every service for both my children. xxxx

Autimom said...

great blog and i love the anology you use.....i was told that once i charlene got diagnosed, it will stick with her for life, but like you said so what, it doesnt change anything and its def stil a stigma which will probably keep rearing its ugly head unfortunately, but we just keep fighting for the best for our kids xxx

claireh said...

cant add anymore only that ur a wise, wise woman :-)
fantastic analogy and one il remember to use
xxx

KWombles said...

Petunia,

what a great blog post. Labels let us know what's going on, how a person thinks, sees the world, lets us better help and understand. Labels are good things. :-) Good luck.

Jean said...

Love the analogy petunia...I'm gonna try to print it off and stick it to my fridge!!!
I have a full-on autie who is the happiest, most cuddly child on earth...I pml at Una's comment (in a wry way...i know how bloody frustrating it is too).
It can take a while before some of us are ready to accept our kids labels, but ultimately, they can only help.
Inspired words hun.
XXX

Katy said...

Great blog as usual.People look at me as if I am mad when I say I am getting Joe assessed.Jim label as i see it was was a bit like a recipe book it gave me the general idea but i also tweeked it a bit to my taste and that of my family's.Any way i like labels because second son ripped some labels off my cans and i opened a can of what i thought was tin tomamtoes and ended up with beans and boy do i hate beans.So if i had a label i could have dealt with the said beans and ignored them in the way i do with people who say you don't need labels!

jazzygal said...

Great post Petunia! Yes, a label is good....very good but a correct and complete label is King, so ....Keep fighting for your middle can!

The one thing I'll say about professionals and their sometimes reluctance to attach a label is that (as explained to me) they don't want to in some (WiiBoy's for example) cases as they feel to do so may actually impede their progress. They feel that others may treat them differently...teachers, other children etc. Also if they have an ASD diagnosis with SNA etc; etc they may be considered, officially to have an intellectual disability. Or, something like that......can't remember the exact words used.

For kids who progress to the stage where WiiBoy is and labels are being exchanged, then I can see their point..... it is something to consider.

However, we decided to insist on a new label (PDDNOS) in order to TRY and get continued albeit reduced services. I still believe a label is required, It is however a detachable label ..... to be worn only when necessary ;)) AKA..... "Playing the Game"!! xx Jazzy

Looking for Blue Sky said...

Totally agree! My ds has recently been diagnosed with aspergers, and it has given me a road map, what services to look for, what sites to consult. My dd2 has a 'diagnosis' of cerebral palsy, but that's just an umbrella description in her case. In fact, her neurologist has not found a similar child anywhere in the world. So there are no websites to consult, or parents to talk to, no idea what the future holds. Luckily she is a little sweetie, but I think I could have helped her more if I had a label for her problems.

coolkid said...

fantastic discription hun, might have to nick it some day

you more than know agree totally as right in the heart of the same issue right now xxx

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