Nouveau Traditionalis

(noun) "new traditions"
a wanky phrase I made up to name the type of interior design I love.
what I want to create for myself and my family as we make a fresh start in life
the inspiration I want to give my daughters to embrace change and create a life they love

Tuesday, August 23, 2011

Teacups and sunshine

I started this blog to share the “new traditions” that I wanted to create for my daughters and family after we moved from Adelaide to the tiny country town where my husband was raised. Up to this point I have not shared as much as I have wanted to. Broken cameras made it hard to share house and craft projects, using all my downloads reading other blogs made it hard to post news, and sometimes things are just that bit too personal for me to share. One of those things is my youngest daughter who I call “Miss T” (original right?). I would like to share a few things about my little ray of sunshine.

Miss T was 2 years old when we got a diagnosis of Band Heterotopia. What’s that? I hear you call. Yeah well, we are still figuring out what that means for us. Basically it is a neuronal migration defect, causing the brain to grow with an area of smoothness, rather than all rigdy-like. So far for Miss T this has manifested in Global Developmental Delay. Probably will be upgraded to Intellectual Disability when she is older. I wish my upgrades only occurred at the Qantas desk.

I have found it difficult to share much about Miss T’s struggles because it is just damn hard to put into words. You either sound like wonder-mum doing everything on Earth to help your child overcome these unfair obstacles, or you come across as a whinger. And Lord knows (or my husband more accurately), I am a whinger enough. I don’t need another forum to vent to.

Or do I?

Sometimes, I just need to blurt out those bits of parenting that were never on my mummy-wearing-an-apron-baking-cupcakes-in-the-sunshine radar.

Until they were.

So, bear with me while I spill the beans. Ok?


Miss T had a(nother) Speech Assessment yesterday. I think this is her 4th. An excruciating 2 hour long session where I did my best to get her to sit and answer question, play along, point to pictures, play with toys, talk to a complete stranger. I was in the room because in the past Miss T has just shutdown. Put her little fingers over her big blue eyes and just said “No”. Where she gave the therapist her biggest, cheekiest, dimpled smile and refused to co-operate. This time, they asked me to stay in the room. Initially I sat next to Miss T. Trying my darndest not to lead her, give clues, give away the correct answers.

Then, Miss T got tired.

You know, after about 10 minutes.

Then she had to sit on my lap. I tried not to hug her, to not nod my head at the correct answer, not to breathe in at the wrong answers. After one hour she was over it. So was I. We could hear the school kids running around having recess, our bums were numb and Miss T was struggling to listen to the questions, let alone attempt to answer them. Somehow, we got through the assessment, although the last third was definitely not the best representation of Miss T’s abilities. But do I really want the “best” anyway? On her best moment/hour/day, a stranger may be hard pressed to pick Miss T from amongst her peers as having Special Needs. But she does. And she surely needs extra assistance at school. I just hope the exhausted little sunbeam will forgive me today for making her sit through such a stressful and tiring test.

xx Romana


My Secret Rooms said...

Thanks for sharing this.

I know what you mean about it being difficult to write about.
Hard/complex things are difficult to write about in a way that doesn't sound whining or complaining or what else there might be.

Your miss T is absolutely gorgeous! She sure does look like a ray of sunlight :-)

Kath Lockett said...

You're not a whinger and you're brave to write about this - you have more than your share of things to worry about and NO-ONE would begrudge you wanting to make sure that Miss T gets all the help she needs.

Miss T also knows that she has a mother who loves her and is doing her best for her. Hugs to you! said...

Yes, I agree, you certainly do have your share of worry, go ahead and vent, it's YOUR blog!!!! I'm sure that both of you would be exhausted after that, what an emotional drain it must have been for you. And wow, she is absolutely adorable.

Suzy xxx

Anastasia said...

Thanks for sharing....MIss T is gorgeous!