Fiona’s experience with Asperger’s

Since the release of David’s Gift last year, and I have come across many families who are traveling very similar Autism and Asperger’s syndrome journey’s.  I just love hearing their stories, and I know that in hearing others’ stories we can learn so much from them.

This week, I am commencing a special ‘guest blogger’ spot, where I will feature an article from a reader who maybe a parent, a teacher or somebody who is working in the field of Autism and Asperger’s syndrome.

I have asked one of my regular contributors to the David’s Gift Facebook page, Fiona Bray to write a little about her experiences.

Fiona has been married to her husband Kym for almost 18 years. They have two sons,  Aaron who is currently studying in Year 12, and Kolby who is 12 and was diagnosed with Asperger’s four years ago.  Fiona has rheumatoid arthritis and so in order to take care of her health and spend time with Kolby, she is now a full time mum.  Currently she is helping another dad, Andrew Burston, who has a child diagnosed with Autism and  has developed an online support network for families in the Mt Gambier and Eastern South Australia area.

I hope you enjoy reading Fiona’s story.

How times have Changed

Fiona Bray, March 2011

 

I remember clearly the first time I finally had the courage to join a local parent carer’s support group.

I had circled the block twice, trying to get up the courage to finally walk in.  At the time the support group was for parents who had children with a variety of special needs- but it turned out that most of the group was made up of parents with children with ASD (Autism Spectrum Disorder). Our son had only been diagnosed a few months before, and I felt like I was drowning… Leading up to his diagnosis people couldn’t help but give us their opinions- whether we wanted to hear it or not.. ‘just leave him with me for a week, I’ll sort him out’, ‘he didn’t behave like that at my house’ and ‘he only acts up when you’re around!  But the statement that hurt the most when we first mentioned to close friends and family that it was suspected he might have Asperger’s Syndrome was ‘he doesn’t have Autism, you just spoil him and give in to him all the time’.  At the time I didn’t even know what Asperger’s and ‘Autism Spectrum Disorder’ was, so that particular statement really upset me.

So finally after two previous meetings where I pulled up and then lost my nerve and didn’t even get out of the car, I finally went in. I will have to say it was the best thing I did. After, when I walked out for the first time since we started on this roller coaster ride called Asperger’s, I finally didn’t feel totally alone. I discovered there were other parents out there just like us, with kids just like ours. I looked at those more ’experienced’ mums almost in awe. They seemed to understand what Asperger’s and Autism was and how to get through to their kids in ways I hadn’t thought of.  I came home with ideas and a new feeling of confidence, that maybe I could do this after all. And so began the journey to educate ourselves (boy ― have I read some books over the years). We have surrounded ourselves with friends and family who know and understand Asperger’s and Autism, and I finally had the confidence to no longer stand for the way our son was being treated at his school (unfortunately not only by other students, but more often than not by the teachers-he was labeled as a trouble maker and in need of anger management- even though by this stage he was the victim of bullying on a regular basis).

Kolby on the Beach

It’s now four years later…it feels like so much longer! Since then we have changed schools, and fortunately he is no longer treated like a trouble maker – they have taken their time to get to know him and he hasn’t looked back. We have gone through OT, speech and academic assessments and therapies and are now starting down the road with a psychologist to help with puberty and self help skills now that he is on the brink of the dreaded teenage years.

It has been a long and bumpy ride, but so worth it to see him (and us!) change and grow- and more importantly we have learned to accept him for who he is and understand him in ways we didn’t think were possible.

It’s funny now when I go to our support groups and I am sometimes seen as one of the ‘experienced’ mum’s. Our son is only 12, so we have a lot further to go on our journey yet, so I am in no way an expert! I think the biggest difference between me now and then- I now realise you may never have all of the answers, you are always learning, but I now know that’s OK too.

If you would like to be one of our guest bloggers, please email me.  I love hearing your experiences and I know other parents like hearing ‘real’ stories, tips and strategies from ‘real’ people!


6 Responses to “Fiona’s experience with Asperger’s”

  1. Thankyou Sally and Fiona for publishing this story. I am the Grandmother of a gorgeous 7yr boy (my first grandchild) who has ASD. It is great to read other peoples stories. Logan was diagnosed very young, about 2 yrs old. I must confess that I was one of those critics before his diagnosis, and that was before we even went down the testing paths. How wrong I was thinking that his behavious was just a discipline thing. But I am now in full support of him and his parents. His parents (my daughter and son in law), to me, are the most wonderful parents in the world. They do so much with Logan like finding activities that suit him, struggling with school issues, reading, writing and craft at home, Dr’s appointment, special times just for him, and most of all just so much patience and love. At the same time they have a 5yr old boy who has severe vision issues from one eye. This requires 6 hours patching every day at which time he is basically blind, so constant supervision, and they also have another little lad, 4 mths old, that we have just discovered is deaf in one ear. They all get their own seperate special needs and time. Tania, of course cannot work, so they do struggle financially, but both sets of Grandparents give them a lot of support. They are the most delightful and gorgeous of boys and I love them all so much.
    Reading your story Fiona, helps a lot.
    And Sally, please keep these correspondences up. They do give me a lot of courage to know we are not alone.
    Thanks
    Maryanne
    One very proud Grandmother

    Maryanne Mugavin
    3:38 pm on March 21st, 2011
  2. Hi Maryanne- thank you for your wonderful post. How fortunate your daughter is to have you in her life. My goodness, 7, 5 & 4 month old boys would be a handful enough without each of them having a challenge to deal with. Tania must have the patience of a saint! Thank you for taking the time to write, and thank you for being there for her, so many parents don’t have support from family – and that support is just so valuable. Sallyxo

    admin
    4:31 pm on March 21st, 2011
  3. Thanks Maryanne- wow it sounds like your daughter has her hands full for sure!
    I have to admit that the some of our worst ‘critics’ we had pre diagnosis are now some of our strongest supports- I think initially it is easier just to see the bad behaviour- and the parents (usually just trying to defuse a situation in front of an ‘audience’) do appear to be ‘giving in’ and spoiling the child… but once people start to understand what Asperger’s is, the ones who care enough will understand eventually we are just choosing your battles- not giving in.
    It sounds to me like you are a very loving supporting mum and grandma!

    Fiona Bray
    6:19 pm on March 21st, 2011
  4. Thank you so much for sharing your story, it all sounds so familiar. The comments you have heard are so familiar to the parents of kids with aspergers. My Mum still denies the comments she made, he’s spoilt, it’s nothing a good smack on the bum won’t fix and back in my day when there was discipline we didn’t have these problems!! Ring a bell with other parents? Anyway my dad rings me often and always finishes our talk with ” you doing a great job well done”.
    The best advice I ever got was from my son’s Dr he said to me ” Michelle everything you have learnt about parenting (I have an older daughter) throw it all out the window and start again!
    Yes it’s challenging but i wouldn’t have it any other way. My son asked me if I could have him without the aspergers and I said ” I wouldn’t change a thing because he is perfect the way he is now” I will never forget his smile.
    Regards to everyone and remember the smiles
    Michelle

    Michelle Tahir
    8:17 pm on March 21st, 2011
  5. How true Michelle! –

    admin
    7:49 am on March 22nd, 2011
  6. Hi Kim,

    Well I think you have encapsulated how many families feel. Trying to get others, and especially those who are family members to understand can be very difficult. You cannot do this all by yourself, you really do need to get others on board’ to help convince the others. Sounds like you have great support from your mum, she is probably the best place to start. What I found was that I needed to just keep talking to those who didn’t understand and use positive empowering words to show how your daughter improves when certain strategies work. I used to feel like a dripping tap sometimes, but eventually the penny will drop. I don’t think that people really ever get it, unless they live with it 24 hours a day. But in the end, if it is causing grief for you and your daughter will pick up on that -its probably best to give them a wide berth!!! xo

    admin
    3:39 pm on June 6th, 2011

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