From the edges of the Spectrum | interviewing Kate

I have found Twitter to be, along with all the laughs, an amazing place for support and camaraderie. While all our kids are different, it is so comforting to know that others are having a hard day as well. I have been extremely fortunate to have connected with a number of tweeps over the past few months, bonding over non-sleeping children, often late into the night.

Kate from Kate Says Stuff is one of these mums. We are often both online, willing our kids to sleep, begging them to sleep. Lamenting our lack of sleep. When she’s not tweeting, she writes a pretty awesome blog and is a wonderful mummy to her four kids.

I was so excited when Kate agreed to be a part of my interview series, From the edge of the Spectrum – I am sure you will enjoy it as much as I did.

1. Tell us a little about your family, in as many or as few words as you like. Who are you?

We’re a family of six in a smallish house on a biggish block in the outer suburbs of Melbourne. There’s the Supertrucker (who spends a fair portion of the week working away from home), Me (busy Mummy Kate), the Big Boy (8), the Big Girl (6), the Little Mate (3) and the Babygirl (1)

2. What ‘label/s’ does your child/children have? And when were they diagnosed?

Our Little Mate was diagnosed with Autism and a moderate intellectual disability in early August of 2011. A few months later our Big Boy received a diagnosis of Aspergers Syndrome (AS) and Oppositional Defiance Disorder (ODD).

3. What prompted you to seek a diagnosis?

For the longest time we thought our little boy was just ‘taking his time’ with learning to speak. With two older siblings he didn’t really need to. But some time after he turned two things started to change more and more noticeably. The language that he did have was disappearing and there were no new words to replace it.

He started having severe meltdowns (similar to tantrums but neurological in origin so he literally cannot respond to our efforts to help him, and often far more violent). Most often these happened during the night. He stopped responding to other people and would noticeably shy away from strangers. I looked after my nephew a day a week mid last year… he is 9 months younger than the little mate and it was then that the gap between them developmentally became blindingly apparent to me.

We’d had concerns about the big boy since he started school. He’d seen a psychologist in the past and we thought it likely he had some sort of anxiety or depression. Testing revealed some interesting cognitive behaviours that prompted us to follow up the possibility of an ASD and once our little mate was diagnosed we further realised that likelihood.

4. What traits of their diagnosis are the most obvious/cause the most issues?

With our big boy: taking things literally and responding inappropriately to situations. Difficulty making and maintaining friendships. Anger and aggression as well as other antisocial behaviours.

For our little mate: lack of ability to make himself understood verbally, inability to deal with new situations and change. Fear and stress in group situations (unless his siblings are there), severe seperation anxiety combined with very string attachment to a very few key people in his life. Violent and frightening behaviour during meltdowns and sever sleep issues.

5. What therapy or strategy do you think has made the biggest impact on their life?

Our little mate started speech therapy towards the end of last year. Because access to services in our area is beyond appalling that is all we have been able to do so far but we’re looking into private OT and social skills groups for this year.

We’re also looking at behaviour therapy this year to help support our big boy.

6. What therapy or strategy has made the biggest difference in YOUR life?

Can’t say yet, but I hope all of them soon!

7. If you could do it all again, is there anything you wouldn’t do, or would do differently?

We’re still very much at the beginning of our journey with ASD. I wouldn’t do anything differently myself but I WOULD change the way the system throws a diagnosis at you and leaves you floundering with no real support or direction to speak of. This si something I hope to address on my own blog this year by hopefully creating a resource of sorts that I would have found helpful myself.

8. Is there a particular resource, book, website or blog that you recommend to other parents?

I was gifted the Australian Autism Handbook by Benison O’Reilly and Seana Smith which has been a very handy resource. I follow both the authors on Twitter as well and think it is amazing to have access to them via that medium.

I also follow Sue Larkey on Facebook and find her ideas and website very informative.

Aside from that I read lots of blogs. The I Love You Song was like my touchstone in the early weeks… reading about the ups and downs of their diagnosis journey really helped me feel like I wasn’t alone. I’ve always enjoyed Stuff with Thing  as well and get a lot out of her weekly Autism Hero Highlights.

9. If you would like people to know one thing about your child, what would it be?

My big boy is fearless and brave. His heart is huge. Do not judge him by what you see, he is all bluff and bravado but inside he is just a boy like any other. And I love him.

My little mate is a gentle giant. He has a smile that will light up the room and gives the best cuddles. Do not judge him by what you see, he may shy away or cry or tantrum but inside he is just a small boy like any other. And I love him.

10. Where to from here?

Onward and upward baby! 😀

Kate blogs at Kate Says Stuff  about life with the Supertrucker hubster and their four children. She shares family tales, recipes, household organisational tips and hosts some great reviews and giveaways too! She’s a social media addict and you can catch her on Twitter  and Facebook too.

Thanks again Kate for being part of this series. For those that may have missed the first two interviews, you can catch up here and here.

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Comments

  1. This series is great renee, thank you.

    And thank you kate for sharing. I have no experience of autism or aspergers but am sure as more of my friends have children and we enter the education system we will need to understand more about ASD. I am in awe of your ability to manage everything in your life, and write such a fabulous blog.

    I hope more services become available. It seems ridiculous that a country like ours is so lacking in some areas.

    • Thanks so much Kate. I’m kind of amazed how much I have learned myself the past 6 months… by necessity obviously but it has really shown me that where I thought I had a good understanding of ASD in general I had very little idea!

  2. From a mum who has had no real life experience with aspergers or autism, it can be intimidating. I want to be supportive of parents who are dealing with this in their families but feel a little ignorant at times…I pop in to Kates blog every now and then, not just to deepen my understanding but also because there is something special about the way she blogs – with intelligence, positivity and tender love.

    Great work guys!

  3. I think Kate is incredible; an incredible mum and woman and I’m sure that her children are beautiful too.
    Kate I wish this was not your road, but I know you will travel it the best way possible for your little people. Xxxx

  4. Kate I knew about Little Mate but I totally missed the news on his big brother. Had no idea- sorry to hear about the fresh double whammy. I also am in awe of how much you achieve, and with so much interest, positivity and love. They’re lucky to have you xx

  5. i have followed kate on twitter and her blog for a while. she is truly inspirational and has amazing strength and perspective. And she is doing such an amazing job. x
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