From the edges of the spectrum | interviewing me

A couple of posts ago I mentioned I was planning a series of interviews here on the blog. I am going to call them ‘from the edges of the spectrum’ simply because I can’t think of anything better (open to suggestions!).

The interviews are all about sharing; sharing insights into other families living on the edges of the spectrum, sharing information from specialists and therapists, sharing our stories. With the hope of finding some common ground and extending our support networks. And with that, as my blog is still only fairly new, I thought I would kick off by interviewing myself. Don’t worry – far more interesting people will be shared over the coming weeks!

In the spirit of sharing, if you have any questions, I encourage you to please ask. I will always do my best to answer, or to find an answer for you.

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

We are a family of 3, mum, dad and Poss who is almost 7. We also have a selection of pets; a small white dog, 2 cats and a pet rat. We even had sea-monkeys but they didn’t survive the recent hot weather! We are surrounded by a wonderful family, although they are spread far and wide, making day-to-day support hard and that much more treasured when it comes.

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

Poss was officially diagnosed with Aspergers in July 2010, although we received a ‘provisional diagnosis’ in May 2010. Even though we knew she would probably end up with that diagnosis after going through the diagnostic process, it still shook us to the core. I remember my mum saying to me at the time ‘just because you can see a punch in the face coming, doesn’t mean it won’t hurt’. How true.

3. What prompted you to seek a diagnosis?

Poss had just started school. Despite being a ‘daycare baby’ for many years, she really struggled adjusting to school life. She hid under tables, she ran away, she cried, she squished herself into lockers, she yelled, she was intense, there was a horrible incident when she hit another child. Her behaviour in no way matched her academic ability or the little girl we knew.

We all thought it was because she was on the young side, or maybe… who knows… I blamed myself I guess for being a working mum and so did some of the other parents in her class. Openly. It was a hard time.

School guided us through the process of finding a paediatrician. She met with Poss for a total of 10 minutes before telling us she was pretty sure that she was on the Spectrum. I had no idea what she was talking about. I cried. Husband cried. My mother cried. Then my nan died a week later (not related of course, but at the time it was all too much). And the testing begun. It was a hard time.

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

I found this a hard question to answer and almost removed it (interviewers prerogative!), so while I am going to answer it, I don’t want this to be taken as a complete list of all her challenges. It changes and evolves daily. Steps forward with some aspects creates steps back with others. Her list of triumphs is longer and one day I will share that too.

– She is extremely sensitive to noise and often wears big pink headphones to block it out. If the headphones aren’t available, she will retreat into small spaces; under tables, in cupboards, under her bed.

– Her honesty and inability to filter her words creates both embarrassing and hilarious moments. She can’t understand why everyone isn’t as honest as her. In her world, actions and words mean exactly what they say – she often says to us “just say what you mean”.
– She finds sleep, both falling and staying, extremely difficult.
– She suffers from high anxiety relating to so many aspects of her life.
– She needs her routine. Any changes to it causes stress. Stress causes lack of sleep. Lack of sleep causes stress. So the cycle repeats.
– Her intensity can be really hard to understand. Friendships with her are so full on and she often scares children off. I find it really hard to watch her play. There are so many things she simply misses, doesn’t see, doesn’t ‘get’. We are blessed, so blessed, to have a wonderful group of girls who love her and provide her with such great examples of friendship.

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

Social skills training with her peers, regular psychology sessions and occupational therapy have all made tangible improvements.

We have also had a wonderful teacher for the past 6 months, along with her brilliant aide for the past 12 months. Together they have taught her patience, quiet and persistence. They have also nurtured her, pushed her and extended her. And we couldn’t be more thrilled that we have them both again for Grade 2!

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

Understanding two things, which have stopped us torturing ourselves:
1. It’s not our fault. For so long we thought we were simply bad parents who alternated between spoiling our only child and neglecting her by leaving her in day care. You know what? We did neither of those things. We have an amazing little girl, who has some challenges, but it’s not our fault.

2. It’s not her fault. Sometimes she does amazingly embarrassing things. Melts down, lashes out, does something stupid and ill thought out. But it’s not her fault. She doesn’t do it to piss us off or to embarrass us. Sometimes she is simply overwhelmed by things that are out of her control. It’s our job to minimise these, but it’s not her fault.

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

We were fortunate enough to have a quick diagnostic process, some families go through it for years. I don’t know that I would change anything. We are doing the best we can, with the information we have. Every day we learn more, she learns more and our strategies have to change.

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

Our first stop after diagnosis was to a bookstore, where I bought Tony Attwood’s book, The Complete Guide to Aspergers. This became our dictionary as we went through those first few months. We have also found much information on the Autism Victoria (Amaze) website, Sue Larkey’s website (hearing her speak live was a wonderful experience), along with the Aspergers Support Network.

We have also had support from Grace and the brilliant team at Autism Advisory & Support Services. They offer a 24 hour information and support telephone service, which we have called on numerous times. And they do this with no government funding and with so much care and understanding.

Finally, there are some wonderful Tweeps on twitter, who live this every day. They have been there and tried that. They are a wealth of knowledge and understanding. I will be sharing some of their inspirational stories with you over the coming weeks.

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

She is an amazingly sensitive, smart, feeling girl. She is wise beyond her years and hilariously funny. She makes the most loyal and dedicated friend, honest and caring. Sometimes she will melt-down, loose it, be impossible and defiant. But it’s such a small part of her and those challenges make her successes so, so much sweeter.

10. Where to from here?

We are making some minor changes to her therapies this year, but essentially this year will be consolidating what works and what doesn’t. Focussing on the good and building on it. We have a fabulous team with us now and we really hope to continue the good run we had last term. There will be challenges, changes and bad days. But we will keep trying until we get it right. Whatever that may be.

Come back next Tuesday for the next installment From the edges of the Spectrum!

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Comments

  1. Hi Renee,

    I LOVE your interview name ….. from the edge of the spectrum is perfect!

    I am not a mother of a child with Aspergers, but in my relatively short teaching career I have taught a number of them and I must admit that most of them were my favourites in class! Once they know and trust their teacher they are so endearing.

    Anyway I just wanted to say with parents like you Poss is going to be just fine. xx

    • Thanks so much Ali!
      Teachers who can make that bond, well, they are worth their weight on gold! If you can make a connection with their child, your ASD parents will be loving you!! xx

  2. Have just started following you on twitter I love your blog I also have a friend (who I meet via Twitter) who has a child that has Aspergers till I knew her I had never heard of Aspergers & through her, websites I’ve learnt some things but am hoping to learn even more. I also meet another friend on twitter only this month whose child also suffers with Aspergers.

    (((( Hugs )))) XXXX Kisses XXXX

    • Thank you so much – for following me and taking the time to leave a comment. There is so much to be said for friends who take the time to understand what a diagnosis means for a family – good on you for doing some research, a true friend. The more people who understand more about it, hopefully the more acceptance there will be.

      Thanks again xxx

      • Sweetie I hope its alright if I RT this blog in twitter when I tweet it as I’ve already done it twice. You won’t see it as my twitter account is locked so you need to follow me to see it but want others in my time line to be aware of this post.

        (((( Hugs )))) XXXX Kisses XXXX

  3. Renee, you are such a brilliant mum and Poss is so lucky to have you and your whole family, as you are so lucky to have her. You write so beautifully and honestly, and you will help so many through this blog. As we both know, it really does help to know that other people are going through challenges too, so that we know we are not alone xxx

    • Thank you so much Shell.
      I value your comments and opinions so much – as I truly believe you are super mum, with what you guys have gone through this past 18 months!! xxx

  4. Go you! Go Poss! Your description of her as sensitive and fun and quirky fits my gorgeous sons, too.

    • Thanks so much Jane! I would love to hear more about your boys – drop me an email if you are interested in being interviewed.

  5. It always makes me incredibly sad that some parents feel the need to judge parents or children for certain behaviors. We are all different, not all children fit into “normal” whatever normal is and we should embrace our differences. So pleased your daughter has some wonderful friends. You sound like wonderful parents 🙂

    • Thanks Carli… we have faced a lot of that judgemental behaviour over the past 18 months and it’s been a huge shock to us. Maybe naively I sort of thought people would be supportive of our girl, or at least simply let us get on with it, and most have, but some have been incredibly cruel. I will blog on it at some point soon… when I can articulate it without swearing! xxx thanks again

  6. Renee this is a great idea!! These interviews will not only let the rest of us in on how life is, but it might just toss up a few gems for yourself once you get all of them together! Thanks for being so honest. I have to say that my favourite thing about Poss is most surely her honest and oh so literal view on life- especially when she warned me to bring food over here to Africa in case I starved!! Keep up the great writing. 🙂

    • Thanks Lucy! That’s what I am hoping – that by sharing these not only will we learn things, but others will as well! Love that she was worried about food for you!! xxx

  7. I look forward to reading more of these and learning lots.

  8. What a beautiful raw post. Thank you. Absolutely love the pic of her dressed as a super hero, gorgeous!

    • Thanks Christie! The pic was taken at her school musical. We were so proud that she took part and did such a wonderful job with her friends!

Trackbacks

  1. […] 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 […]

  2. […] part of this series. For those that may have missed the first two interviews, you can catch up here and here. Filed Under: Aspergers, From the edges of the Spectrum About A […]

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