Families winning at life with a child who has Autism – Team Russell

By February 17, 2017Albinism, Autism, Education

In this series we will be meeting some amazing families who have embraced their child and their autism wholeheartedly. They are passionate about spreading the word that being diagnosed with autism does not define your life. Although there are indeed challenges along the way – the positives out way the negatives in abundance.

I first met Kirsty through a bloggers group we are both part of. I was instantly drawn to her writings at –

My home truths – real life confessions of a special needs parent(With a side of autism, albinism AND fun!) 

Kirsty is a passionate advocate for special needs parenting, albinism and autism. She is always looking for ways to share her experiences with others. Her hope is to inspire other parents to believe in their kids, to have the confidence to fight for their needs and to know they are not alone.

 

Please introduce our readers to your amazing family:

Our amazing family is made up of me (Kirsty), my husband Nathan, our 12-yo son Gilbert (diagnosed with autism (level 1), oculocutaneous albinism & generalised anxiety disorder), our 11-yo daughter Matilda (diagnosed with autism (level 1) and separation anxiety disorder), our 6-yo daughter Delilah (my independent little miss) and our two pugs, Evie and Mandie.

I write a blog, called My Home Truths, where I share our experiences as a special needs family and all the things I’ve been learning along the way. I also help service providers put together information and resources for families and have presented in person at several speaking engagements. My passion is trying to help other parents come to terms with a diagnosis and helping them feel less isolated and alone.

My husband is a high school teacher and I have to admit his knowledge of the school system and education lingo comes in very handy when it’s IEP time!

My son, Gilbert, has a big personality, is highly intelligent and very funny. He lives life in his own unique way and I just wish I had a tenth of his confidence.

My eldest daughter, Matilda, is a sensitive and creative soul. Her dream is to be a YouTube star and she loves recording videos and watching game tutorials online.

My youngest girl, Delilah, has just started school this year and is loving it. She is dramatic, imaginative and is always wanting to play games with friends and family – a VERY different personality to her two older siblings!

How old was your son/daughter when they were diagnosed with autism?

Gilbert was diagnosed with oculocutaneous albinism when he was 11 weeks old and was later diagnosed with autism when he was 4, after more than a year of monitoring and testing.

Matilda was diagnosed with Asperger’s when she was 5, after serious issues transitioning to primary school and accompanying speech and hearing issues. She was rediagnosed under DSM V last year, at the age of 11.

Many parents say they knew their child was autistic – was this the case for you and how did you know?

I can definitely see the signs now with the benefit of hindsight, but I had no idea at the time.

My son, from the start, would have periods of what we called “Gilbert Time” – where he would zone out and enter his own little world. It was hard to recognise signs with him back then as he also has a moderate vision impairment which can mimic some of the sensory and social difficulties of autism. His inability to deal with change, the fact he never played with toys, his fascination with pedestrian crossings and street signs, his obsession with the Foxtel information channel and his habit of wanting to replay movie credits, over and over and over again, all pointed towards an eventual diagnosis.

My daughter’s diagnosis was a bit of a surprise. Compared to her brother, she seemed to have fewer difficulties and we had no real concerns until she was 4 years old and she was still struggling to make intelligible speech. We discovered she had glue ear and hearing loss and these issues were addressed but speech therapy revealed more concerns with her receptive language too. Then she started kindergarten and she fell apart. She suffered severe separation anxiety for the first three terms of the year (she had to be pulled off me by an aide every single day). She also experienced night terrors, heightened anxiety, toileting problems and trouble making connections and friends. Her eventual diagnosis made sense of all her struggles and helped us better help her.

Can you share with us a bit about the way you dealt with the diagnosis?

I ended up having to take 5 weeks off work after receiving my son’s autism diagnosis as I did struggle to accept it. It just wasn’t fair that he had to deal with this on top of his existing albinism diagnosis too. I also sought help from a psychologist as I was in a very fragile place (and I’m still on anti-depressants to this day).

However, I’ve always needed to be busy and to do something so after this much needed break, I focussed on moving forward.  We got in touch with ASPECT and with other professionals so we could start getting him the help that he needed. I also read up on autism and did all I could to understand the condition so I could understand him better.

As for my daughter, I felt so guilty when she was first diagnosed as I felt we missed so many signs, being so preoccupied with her brother’s needs. We had always considered her our “typical” child and it was hard to initially accept that she too had autism because she is so different to her brother. But, again, I focused on addressing her needs and focused on getting her the help and assistance she needed.

I must say, in the beginning I was consumed at looking at the deficits that made up the diagnosis so we could get funding and assistance. Sadly, autism is considered a disorder by most and I knew no different as a parent new to the diagnosis. But now, I understand that autism is a different way of thinking – it’s not a “wrong” or “disordered” way to be. My kids would not be who they are without autism, so now I have a more positive outlook and I can see all my childrens’ strengths. It’s taken many years to get to this point though!

How has autism affected your life?

As a pervasive and lifelong disorder, autism affects every part of our lives as a family. We struggle to go out and do things as a family as my son just wants to stay home and hibernate when not at school. Social occasions are also very hard and we tend not to stay too long at parties or other celebrations. And everything seems to take longer and requires more planning to anticipate and mitigate potential issues.

However, we have travelled overseas twice as an autism family (due to intense planning and preparation) and we have overcome many other challenges over the years because we have made the decision to tackle them and work out a way to get around them. Despite the challenges, we have grown closer as a family, developed more patience and have become so much more understanding and accepting because autism is a part of our daily lives.

What are some things your kids have taught you about the world?

I now know more than I ever wanted to know about space, the planets, Telstra payphones, Minecraft, My Little Pony and YouTube unboxing videos! But I also know more about understanding, not making assumptions, the power of the sensory system, kindness, gratitude and the joy found in the unexpected.

My kids have taught me that my world view is just one of many – I must confess I was quite set in my ways before they came into my life! They have opened my eyes to different beliefs, thought processes and a wealth of ideas I never knew existed. They have taught me to be a better person, to actually listen to others and to be more aware of the sensory environment around us.

What advice would you give to other families who have a child with autism?

  1. Listen to your kids and advocate FOR them. They have views and opinions too and we need to pay attention to them. We should never assume what they want – we should always consult with them and listen to their thoughts too.
  2. Be careful about placing your own expectations and desires on them. For instance, I used to worry about my son who spent his lunchtimes by himself in the playground, playing his own game and stimming. But one day he told me that he was perfectly happy doing that and it calmed him down so why was I so upset about it? He was enjoying himself and he CHOSE to be by himself – at that time being social would have stressed him out and made things worse. I finally realised that he was happy and I finally accepted that I needed to place my own desires for him to one side. He is never going to be typical and I’m finally truly okay with that.
  3. Don’t think of autism as a disorder. Think of it as a different way of thinking. Look past the “deficits” and see the strengths that are unique to your child.

Love Kirsty xx

About Chrissie Davies

Chrissie Davies is an educator, consultant, published writer, loving adoptive mama, and passionate advocate for understanding children with challenging behaviours. Through her consultancy Chaos to Calm, Chrissie specialises in creating understandings and strategies to meet the needs of children with challenging behaviours. She supports both families and teachers to create more awareness of the different ways to use communication and emotional engagement to make positive changes in children’s behaviour.

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