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29.3.12

To label or not label...

So I've sat for almost 2 hours trying to write this blog post :( numerous starts, countless deletions, trying to get the words out of my head...
To those that know us, they will be aware that we have 3 amazingly beautiful children, all different within their own right, all fabulous at varying things...but the reality, our new reality is that we have 2 children on the spectrum, one fabulous daughter who was diagnosed 3 years ago with Aspergers and one handsome spunky son who recently was diagnosed with what they say.."mildly autistic, borderline intellectual disability"
I've never really blogged about their diagnosis, results or for want of a better word "label" how we came to find out or how we in actual fact feel about it.
I remember Pixie's assessments and subsequent evaluations quite clearly, she had been working with the school well being officer for various problems at school, bullying, anxiety etc and then this particular day after school the officer made a point of talking to me about her concerns for pix and how she felt it was best to take her to a psychologist as it was beyond her qualifications to go any further with her. I was a little taken aback, composed myself and realised he was doing what was best in my daughters eyes. That night we had another night of tantrums, yelling and our beautiful sobbing on her floor telling us she was the naughtiest child in the world and that she
should just die..to say it broke my heart was an understatement, it sent her father reeling and resulting in him demanding I make an appointment for her to see someone, anyone. So phone calls the next day and the ball started rolling..
The day we received the "label" Of Aspergers Syndrome I sat there, trying to make sense of it all, slowly things were starting to make sense, the social awkwardness, the repetitive routines and need for constant order and structure.
Then at home the tears came, and no matter how hard I tried I couldn't stop crying, this was not the life I envisaged for my daughter, life shouldn't have to be hard for children, it's meant to be full of naive visions and tea parties and friendships..not times of isolation, sometimes bullying, constant self doubting..now I know that some will say
yes but these are all "normal" childhood things..and yes they are but for aspies it compounds and it grows and it's harder to understand for them and comprehend. I was really against the label at the start, completely and utterly against it, almost to the point I didn't want people to know, but that was my issue to deal with. I felt I had failed as a mother in some way. Like I had let her down. But after long talk, many talks actually!!! with her psychologist
and my incredibly amazing
Husband, we accepted the "label" and went with it, in orde to have the label we opened doors for her that we may not have had the opportunity to have before, it allowed people to "get" her, to understand her. That being said, once we did accept it and decided that we would tell people their were those who wanted to help, those that didn't understand and those that were so uncomfortable about it that they changed the subject, still do.

Zac's diagnosis came about a little differently, he has always been delayed, delayed in his speech, delayed in his walking, all his milestones but as first time parents we took it as he was just a slow learner, he will catch up. How wrong we were. Kinder came and went, and during the whole 3 years of kinder he had occupational therapists appointments, speech therapy, you name it and he had it. School years started and for a little while there he was holding his own, socially was doing fantastic and even seemed to be holding it together academically, not the top of the class, but doing ok all the same..then in grade 4 it was like he started to go backwards, reading took a step back, spelling became and issue and don't even get me started on maths!! So we asked the school to do some testing, which through a public school system can be a long, drawn out process sometimes!! First diagnosis came in grade 5.. Zac has an auditory processing disorder..umm yep ok..talk to us in parent language now!! "he has trouble remembering, so basically his short term memory is quite bad" ohhh ummm right, so how can we fix this? Unfortunately not a lot you
can do..then it was make an appointment with the psychologist, more drs, more appointments and then a parental appointment..in we go, sit down and she just looks at me... My heart sank :( I knew I wasn't going to like
what she said.. "mildly autistic, borderline intellectual disability, IQ has dropped from 79 to 73 since per" umm what??????? Are you kidding me? Another one oft babes on the spectrum, how the hell did this get missed? Omg we
really did fail him, all those times we said, he'll catch up to the other kids, we should have seen the signs. But
the wonderful things with Zac is he is verbally strong, he can talk the talk and that's how he slipped under the
radar!
So, another choice..to label or not to label..we went with the label..

Having aspergers and being autistic does not define my children, yes it's a part of who they are, and it's become a part of who we are as a family. Every single day I am incredibly proud of them, the things they do and the potential they have. I had a conversation with someone tonight, and I mentioned that Pixie had organised Light It Up Blue day this week at school and that I was going to see if she wanted a wristband in support, and she said that in their
house they don't focus on the label..and it got me thinking..don't get me wrong it stung a little when she said that, and believe me she isn't the first to say it about having the label, but like I said it got me thinking, do that many people have problems with labels, was I being a little sensitive? It made me question whether we did the right thing, by A. Getting our children assessed and diagnosed and B.Taking ownership of the label..
I know that I can be very opinionated in what works for us strategy wise, but I also know I can sit back and say nothing when people make their ignorant comments about things regarding my children, and people that are close to us, people that we wouldn't think they would say it but they have and it hurt and no I won't be talking to them about
It, because I honestly don't have the energy to deal with them and then pacifying them for their own ignorance.
But I'm getting off topic, labels are a part of everyday life, mother, auntie, friend, gay, straight, boss, employee, does having the label of being "different" really make people that uncomfortable? If my children didn't have the
label would it make you more comfortable? I make no exceptions for being their biggest advocate. I once had someone tell me that I am their voice, things will happen for them if I shout loud enough.. I will scream it from the
rooftop if I need to, and I make no apologies for the way I run our lifestyle alongside my hubby.
I never introduce my children as "meet my chiildren, this is X, Y Z oh and by the way, they are autistic and have aspergers" I also don't allow it be an excuse to get away with bad behaviour, but having the label has allowed us to
be a little more understanding, a lot more patient, and a little more creative in the way we raise our children.
So as of tonight, hubby and I are adopting the approach of this is us, these are our children, yes these are their
Labels, they carry them everyday the same as you all carry your own labels whether you choose to believe it or not
Is your undoing or blessing whichever way you look at it, but if you can't take my kids as they are, labels and all
then perhaps it's time you moved on.
We won't really be asking people to understand anymore, and no it's not a woe is me statement, it's how we feel,
we're taking ownership of that..we were lucky enough to become parents of kids on the spectrum, and while some days
are incredibly hard and I want to throw my hands in the air and give up, the other days make it so worth it.
So to the person I had the conversation with tonight, I'm not sure if you'll read this, I'm sure you will at some point, but not say anything to me about it, I thank you, for making me sit and think about how I feel about it all, and nope I don't need validation if I did the right thing, I know I'm a bloody good mother, it's easy when you have amazing kids, so thanks for opening my heart and my thoughts on this issue.
For the rest of you reading, sorry for the long winded post lol, and it probably doesnt make sense but I needed it
To get out of my head!
Xxx



13 comments:

Lis said...

Tam honey, you and Scott are amazing parents and you have beautiful children!
You have done an amazing job with all of them and I know it hasnt always been easy for you.
Those "labels" are what has seen you be able to get the help, guideance and assistance for your babes, without them you may still be struggling along trying to comprehend it all.
Ive met Zac and Kenz and they are just the sweetest, cutest kids!
It is no ones business but yours and Scotts as to how you raise your children and anyone who feels the need to interfere in someone elses family needs to be told to Fsck of well and truly (as im sure you will eventually lol)
Love you honey keep up the amazing job you do :) xx

Ali said...

Tam, well written and well said! Labels are a part of everyday life and while they describe us they do not have to define us. I've found that having a label in the world of disability services opens doors and as a parent trying to do the best for your child you need that. But what struck me most about your post is your strength, your honesty, your sense of purpose and your love for your family - the most important labels of all.

Barb Turner said...

Tam your honesty is amazing xxx Raising children is one of the hardest, but most rewarding jobs in the world and I am sure that you are doing an amazing job and can say quite honestly that they are lucky to have you in their corner.

Nannie6 said...

OMG your posts always bring a tear to my eye you and Scott are amazing parents and NEVER let anyone tell you any different... As I have said time and time again you make me proud that you are my daughter... I dont think I've done a half bad job xoxoxo

Annaleis @ Teapots and Tractors said...

We have a child with PDD-NOS and is on the spectrum. I hate the label but it gets us the support we need for speech and behaviour help. So we embraced it as a way of educating the people around us and also as a way for other parents to be able to see that being on the spectrum isn't 'bad' its just not easy all the time! But what parenting gig is! Sounds like your pretty wonderful parents for caring so much! Annaleis xxx

Anonymous said...

I'm glad it was brought to my attention by someone who understood my perspective. My choice to not use labels.....for her! Not your kids but mine. She is 7 she is aware of her diagnosis however to her she just "thinks different" I'm happy with that as is my family and friends. She gets the support she needs at school at those who matter understand and know her and how she is. For me I don't want her to wear a bracelet which has Autism written on it. Why should she be bombarded with questions from other kids at this stage in her life where all she cares about is fairies and princesses and her baby doll Rosie. Maybe when she gets older i have no doubt it will be different and that's when the LABEL will come into use more often. FOR NOW I'm letting her be my 7 year old little girl who loves school and her friends. I never once criticized you or Scott for your parenting as I recall it was a one sentence remark in reference to MY CHILD in MY HOME. I have always offered an ear or any support I can in regards to your children and their learning. Yes it's hard work but the decisions I make in my home are exactly that MINE. It works for us. You can discuss with me if you like. I thought you would see this and understand as I work with kids who struggle every day. However i am disappointed you couldn't discuss with me yourself and left this digital footprint which had to be passed on second hand.

Mal said...

i loved reading this tamara, i loved reading your thoughts on labels and about your family and your kids. However you want to use labels is your business as the parents, personally I agree with everything you said.
Parenting is a tough job, no manual included! You are doing a great job.
This comment is making much sense...lol....but ignore the crap ANONYMOUS comment and get on with doing your job, being a great parent and an advocate for your children...and heres to many drinks in a few weeks!

Renee!!!! Previously known as Anonymous!!! ;) said...

Thanks for clarifying with me!!! See it's nice to know when something comes up at least some of us have the ability to talk things through so that we understand one another's perspective!!! To the person who sent me link booooooooo to you. To the person above Mara is more than ignoring she's about UNDERSTANDING and willing to listen to someone else's view and take on things especially on such a personal issue.

Anonymous said...

What an amazing blog post, having to go through the decision myself on to label or not to label I fully understand where BOTH Tamara and Renee are coming from, but you know what... What works for some doesn't work for others, it's just like we don't all like pineapple on pizza but do we judge people for not liking pineapple?? No we don't because we live in the age where people can be free in there choices and what a wonderful place to live, imagine if we all were the same and made the same choices, what a boring world it would be!!! so to the person who felt the need send Renee the link, YES BOO TO YOU, going down this path IS NOT an easy option, it's one of the most heart wrenching emotional roller coasters that I have EVER been on as I can imagine it is for these women and every other parent out there, at the end of the day we as parents are our children's voice and if we choose to be loud or quiet that is OUR CHOICE!!!

Dee said...

Love you guys xxx

Lisa said...

Hi, Tam, I came to your blog via Punky Scraps. I loved the quote on your layout about your daughter, pure light, and a prism. Having a son with ASD, the word "spectrum" caught my attention and I had an inkling that I would find some autism-related content on your blog. I didn't expect to find your thoughtful and insightful post on labeling, but am SO glad I did. This issue is something that we discuss at length several times a year at our support group meetings. It really is such a personal decision.

For me and my husband the diagnosis was a blessing because it finally made sense of a slew of problems. We could put a name on this collection of issues and challenges, and that helped us focus our search for help and resources. We didn't tell Jeremy right away, but with all the therapy appointments, etc, he started asking questions. (He was diagnosed at 7, and within 4 months or so he asked me why I have so many autism books, and what is autism anyway?) For me, telling him about his diagnosis was important; it put me in control of the information and how it was presented, rather than having him believe untruths or misconceptions on the playground, and arming him with answers when confronted by his peers for being different.

Anyway, just wanted to say that I share your challenges and triumphs. My son is 12 now, and we've come a long way. His future is bright, and his prism reflects a beautiful spectrum. :)

Kerry said...

Two of my boys are on the spectrum aswell so I know exactly where you are coming from with the label thing. Sometimes it helps me to have that label when I need to remember why they behave as they do and why things go into meltdown so quickly over something extremely trivial to those without a label. Most of the time though I tend to forget and appreciate each of them for their quirkiness and fantastic sense of humour.

Helene said...

Love your washi background and your description of Punky Scraps!