Autism Rainbow Day interview part 2

In the previous post you heard Jackie talk about her experience as a parent of children with Autism... the rest of the interview focuses on highlighting a few support services that might be useful for parents. Scroll down to find the relevant links.

"It is not about bad parenting, it is about the child's struggle with the environment."

About Stephen Wiltshire, the artist ("autistic savant") mentioned in this interview.

Links to the support services mentioned by Jackie and I:

Balance support group

Strive support group

Hunter Connect

PlayConnect

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I hope the blogging at Learning to be Buddies this month has helped to build awareness, and make a little difference in the lives of families living with autism. Thank you so much to all parents who shared their stories. The feedback and hits on these posts show just how valuable your stories are in helping to build awareness and helping us see your children as Children first.

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Autism Rainbow Day

Happy Autism Rainbow Day!

Today I spent the morning recording a radio interview with Jackie Hays, a mother of 3 children with Autism. You can hear some of what she says below...

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Helping children with Autism reach their potential

This is a great video from ASPECT that gives some information about what autism is, and what things you might be able to do to help your child.

In the video you get to meet some families and their children who have autism. Professionals are also interviewed about what parents can do once their child is diagnosed. Their suggestions include:

• Research: as no two children with autism are exactly the same, each will need different forms of support. Find out about what approaches are out there by using the internet, talking to other parents, or using telephone advisory services (see www.learn2bebuddies.com.au/pages/autism/doesmychildhaveautism.html for a list)
• Have an individualised early intervention plan: Plan for ways you can help support their communication development, development of social play and behavioural abilities. Recognise that what you do at home is as important as specialist therapy.
• Visuals: Find visual ways of communicating with your child. For example, use objects (such as car keys), photos, line drawings or written words (for older children) to help them make links between spoken words and what they mean.
  

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Getting a diagnosis Part 2

Since the last post I have been listening to what parents have had to say about their response to their child's diagnosis on my Learn to be Buddies Facebook Fan page. Here are some of their responses

• Not surprised - parents often recognise that something is not quite right, especially if it is their second or third child.
  
• Relieved - often the relief came as a result of recognising that their child's behaviour was not a result of "bad parenting."
• Vindicated - parents' concerns can sometimes be dismissed by those from whom they seek advice and help. When their child is diagnosed it is a vindication of their concerns. It can re-affirm parents' trust in their knowledge of their children, and their parenting skills.
• "I just got on with it" - just getting on with the role of advocate for their child is another response that parents can have to the diagnosis of their child.

If you have a child who is diagnosed with an Autism Spectrum Disorder... or any other condition... what was your response to the diagnosis?

If you think your child may have Autism, but don't know what to do next, visit www.learn2bebuddies.com.au/pages/autism/doesmychildhaveautism.html

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Dealing with a Diagnosis

When parents are urged to "get a diagnosis" for their child it is often the beginning of an emotional roller coaster. Every family responds in different ways, but there will be a time of adjustment...

LD Online identified the most common stages of adjustment.

1. Shock
2. Denial
3. Anger
4. Depression or helplessness
   
5. Acceptance
6. Hope and action

Mary gives us a little insight into these stages with her adjustment to the diagnosis of her third child. Chantelle tells us more in her blog post "To Cure or not to Cure?..."

The bottom line is that if you are a parent who is going through the process of diagnosis with your child, give yourself time to adjust. Recognise how you are feeling, work through the emotions ... and don't be afraid to ask for help.

If you are a teacher, family member or friend who thinks a parent should be more proactively pursuing diagnosis or therapy, remember that it is not that simple. Listen, affirm and avoid giving too much advice - this can just be overwhelming. We should be on stand-by: giving information and passing on contacts only when parents are ready for it.

We should never be judgemental. Parents need to find their own way to support their child, to choose their own road, at their own pace, based on advice that they feel they can trust.

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Tania's story

I have a son with autism. He is 4 years old.

He loves laughing, climbing and watching stuff fall. He loves Elmo, Wiggles and the Fairies. He loves his sister, his Mum, his Dad and his Pop. He loves traffic signs.

He is really good at recognising letters, shapes, directions, numbers and colours. He is pretty handy with computers.

He struggles to communicate and to relate to his peers. He struggles to understand how hard he is touching something. He struggles to stay quiet.

Sometimes I , as a parent, find it hard when he wants to be cuddled but he cannot stop his body hitting and kicking, especially when it is the middle of the night. I sometimes find it hard when people think he is being naughty when he is actually on his very best behaviour, especially when he has worked so hard to learn the new behaviour. Sometimes I find it hard to keep my patience with others who judge our family when they don't have all the facts and when people treat you like a remedial parent because I have a child with a disability. But most of all, I find it hard when he is stimming* and I cannot work out what he needs to feel calm.

But then I think about the special moments, like when he "tells" one of his jokes and giggles uncontrollably, or he almost interacts with another neurotypical child or when, with his limited vocabulary, says something that makes it clear to me that he understands more than we know.

My life is forever richer because of my little boy. He can light up the world with his smile. He brings joy to all that take the time get to know him. He will have a brilliant life.

* "Stimming" is short for self-stimulatory behaviour - read more here.

Tell your story
and help build Autism Awareness

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Financial help for respite and holidays

If you are a family who really need a holiday, but are finding it hard to afford the cost of activities such as Camp Autism, then this may help...

Mary passed on that Commonwealth Carers Respite Centres (Australia) can provide up to $300 towards your holiday. To find out if you are eligible, call 1800 059 059.

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