From the edges of the Spectrum | interviewing Cath

I had hoped to get this up earlier today, but a combination of work, the hot weather and a gorgeous friend cooking us dinner tonight all conspired against me. So apologies for not getting it up sooner… But trust me, it’s worth the wait!

Last week I kicked off this series by interviewing myself. I was overwhelmed with the comments here, on Facebook and twitter with support and kindness. It seemed to really resonate with people and let them see a side of Aspergers they might not have seen otherwise. I honestly couldn’t ask for more, as this was one of my primary intents in starting this blog. Anyway – enough about me… let me introduce you to Cath.

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

We are your average middle class family, who have worked hard our whole lives. Tom (my husband) and I met when I was 8, we started dating when I was 15 – he’s my one and only love. We had been together almost 15 yrs before marrying and having our first born Ella, then two years later came Kari.

We own a successful commercial furniture business and have done so for 10 yrs. If you think marriage and kids is tough – then add ASD into the mix…so we are looking for a sea change by late 2012. We need to slow down, breath and enjoy what we have. That is our goal for 2012.

2. What labels does your child/children have? And when were they diagnosed?

Our oldest Ella was diagnosed Aspergers Oct 2010 she was 4.7mnths old – we caught her young, which is a blessing.

Our 2nd born, Kari, has a preliminary diagnosis also of Aspergers, she is almost 4. Preliminary meaning, we, as a family have not sought official sign off of the diagnosis, as we don’t belive at this stage that a full diagnosis would benefit her. We will give her more time and re-assess with our Paediatrician early in 2012. However, we do already access therapy services through a mental health care plan for her without the label anyway.

3. What traits of their diagnosis are the most obvious/cause the most issues or hilarity?

Good question….sometimes it’s Ella’s public stimms that attract the most attention from the public. When she’s not stimming she looks and acts like any other child her age. An example is at the hairdressers the other day, I had both my girls with me (I usually try to go by myself when the respite worker comes to look after them for a few hours every fortnight), Kari was playing her DS on the couch and Ella was staring into space.

As the hairdryers turned on, the music got louder, TV was tuned into Kerrie Ann Kennerly…Ella started to stimm, she paces up and down n throws herself onto furniture. I am happy for her to do it, as it’s her coping mechanism, however she was drawing stares and started to block the entrance so customers could not get in or out. When she is like this she completely zones out and doesn’t notice people around her. I sometimes cannot stop her but I moved her to another area so she’s not in anyones way.

Another stand out would be her rigidness. We as a family run our lives in such a way as we work with Ella and form a strict routine. It’s just part of our families makeup. Every now and then that routine is broken and we suffer for it. The respite worker came in just as I was fixing Ella her favoured peanut butter sandwiches, I spread, fold and cut the sandwiches the same way everyday…the respite worker happened to take over the sandwich making and as I was headed out the door. When Ella found her sandwich made a different way – she had a meltdown.

However, the hardest trait for us as a family to cope with is the fact that Ella is tactile defensive. This means she doesn’t like to be touched. As a baby I had to put her down to settle, she never wanted to be held for too long. Now as she is nearing 6, she hates lining up, group time at kinder/school/assemblys/sports or anything where she will get an unexpected touch or someone brushes past her.

I cannot console her as a Mum needs to when she is hurt. She runs away asking for us not to touch her. We were at a kids party once and Ella fell head over heals (as she tends to be a little clumsy at the best of times) and she was really hurt. Everyone turned to see her run screaming straight past me and into a corner. I was on my knees arms out ready to hug and console her. Another parent commented on how she couldn’t belive what she just saw. I, as I have gotten used to doing these days, simply ignored the annoying lady.

Ella as a resault of her AS and problems with spacial awarness falls more than your average 6 year old. She has had quite a few broken bones but as she doesn’t feel pain like you or I. She can seem like she is fine even when I know she is not. Ella suffered 2 broken collarbones (one prior to diagnosis) and Dr’s didn’t believe me that the bone was broken because when they felt her arm and knee she giggled. When they asked Ella to put her arms in the air, which of course she happily did (I felt sick watching this unfold and not being able to stop it quick enough) I demanded an X-ray. Ella insisted on getting up on the very high table all by herself. We let her, tentively, and the xray showed Ella had snapped her collarbone in two!! The Dr went white as a ghost. Needless to say I was very angry with the Dr, but happy to tell you that we now have a wonderful and understanding Dr.

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

Definitely OT (Occupational Therapy) and social skills groups through our Early Intervention services was the best for Ella. I think taking on those strategies at home has only helped to embed these strategies – our home looks and works like a well oiled EI (early intervention) service with all the sensory toys/swings/weighted mats to boot!

5. What strategy has made the biggest difference in YOUR life?

Plain and simple routine!

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

I think therapies are trial and error. There were some that weren’t for us and we wouldn’t have known that if we didn’t try them in the first place, so yes definately do it all over again.

7. What aspect of your child’s diagnosis are you most grateful for? What would you not change for the world?

Her absolute and unwaivering honesty and her determination for rules! Oh and her one liners are an absolute tear inducing laugh!

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

Sue Larkey for tools, books and free online webinars. Tony Attwood seeing his seminars, reading his books on Aspergers and especially girls with AS has been a huge eyeopener – it just helps as a Mum to understand “WHY”. The “why”, was the part prior to diagnosis that killed me the most. Now I know “why” Ella (and Kari) do certain things or act certain ways, well, then I feel I am better equiped to help them both.

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

She is the most gentle, caring, imaginative and empethict girl you have never met – and she is all mine! 😉

10. Where to from here?

I would say that with the combination of Early Intervention (which winds down now for Ella given her age) and routine at home it has help lay the foundations for a positive future for my girls. Picking a caring and empathetic school can be hard, but necessary for success for our Aspies too. The future is bright – open communication with the school combined with their flexibilty with your child can be the best start to give all our Aspies.

—————————————–

Thank you for reading part two in this interview series. And huge thanks to Cath for sharing her amazing story with me.

This woman is an amazing mum. She inspires me daily with her positivity, her resourcefulness, her ability to get through the tough days with a huge smile on her face. Knowing Ella and Kari personally, I can tell you honestly that those girls are truly delightful and with Cath and Tom as parents – I know they will be superstars in whatever path they choose.

Cath kindly has offered to answer any questions, so if you have any, please don’t be shy in asking!

Related Posts Plugin for WordPress, Blogger...

Comments

  1. What an amazing and inspiring Mum you are Cath.

  2. Cath, you are an awesome mum. So inspiring and moving xxxx

  3. I love this series Renee and look forward to reading more.

    Thanks Cath for sharing your story.

    • Thanks Kate. I am so pleased that people seem to be connecting with it and we have some amazing people coming up!

Leave a Comment

*

CommentLuv badge