Parenting Children with Autism

A Survey

For April Autism Awareness month in 2010 I invited parents to share their stories on my blog.  13 parents told me about 19 children. As my unfortunately belated contribution to April Autism Awareness (my excuse being a 3 month old bub :)) I thought I would share with you a collation of common responses.

Strengths

When asked what their children loved, the top 5 responses were:

1. Technology such as computer and playstation games

2. TV or cartoon characters such as Superheroes, Thomas the tank Engine and Scooby Doo.

3. Their family

4. Gross motor activities like climbing and swimming.

5. Numbers – counting, arithmatic and reading them.



When asked what their children were good at, the top 5 responses were:

1. Using technology

2. Reading

3. Numbers (counting, arithmetic)

4. Gross motor activities

5. Affection (cuddling, kissing family)



When asked to recount a special moment, the most common response was about hearing their child say “I love you”. Others told of achievements such as a good report from school, a first invitation to a play date, first words and a successful holiday.

 

Difficulties

 
When asked what their child struggled with, the top 5 responses were:


1. Social skills - such as taking turns, joining in games with others, reading body language and understanding others’ perspectives.

2. Speech and/or language.

3. Noisy and busy environments.

4. Change, transitions and new experiences.

5. Running away or showing no fear of danger.

 

The Challenge of Parenting a child with ASD

 
Another question I asked parents was about the things they themselves struggled with whilst parenting their child or children who have ASDs. The most common response was that they struggled with the attitudes of strangers towards their children. They talked about the lack of understanding of their children’s needs, especially with regards to behaviour.


For example, several parents wrote about outings “going pear shaped” as their child had a meltdown whilst trying to cope with a new environment. They received comments from strangers – and sometimes friends and family – suggesting that the child was simply being naughty and stronger discipline was needed.

Another common theme was the difficulty in balancing the needs of multiple children in the family when one or more of those children have an ASD. One parent explained that they felt bad that their “quieter” child often did not receive as much attention as their other child whose overt behaviour needed more immediate and constant attention.

The other top 3 responses to this question included the difficulties in finding funding and services, seeing their child struggle with or be sent home from school, and coping with aggression and/or meltdowns.

 

For more information on what this means, and some strategies, you can purchase an information article for AU$2 using the button below.

For other articles, children's stories and information on bullying, visit:

http://www.learn2bebuddies.com.au/

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Parent stories: Different types of anxiety

So... I found after my last post that comments on my Facebook page indicate that if your child struggles to re-adjust to school after the holidays, you are not alone. One parent said that they had to help the children re-adjust every school holidays - not just after the long summer break.

There were also some strategies suggested by families to help their children adjust. They included:

• Playing schools during the school holidays.
• Starting the school routine a few weeks prior to school going back.
• Relaxation therapy prior to and at school - such as deep pressure therapy.

Different things will work for different children/youth. But it helps to understand the type of anxiety your child is feeling.

Environmental Anxiety

This is the label I have given to behaviour that comes out due to anxiety in a specific event. For example, something may happen in the classroom, at school or at home that may cause an immediate reaction. Parents of children with Autism Spectrum Disorders often talk about a child screaming or shutting down, chewing clothing, biting others, running away and/or hiding when something occurs to distress them.

Anxiety due to an ongoing activity or trigger

Other behaviours show that the anxiety is due to a repeated event. These behaviours may include moodiness, nightmares, wetting the bed, the need to cling to someone and so on. This usually indicates that there is an ongoing activity that is causing the child anxiety.

Anxiety Disorders

If a child is showing signs of constant, ongoing anxiety over a period of 6 months or more, it may be time to consult with a psychologist. Kanakos (2011) provides a brief overview of different types of anxiety disorders. These will need to be dealt with differently than the more transient anxieties mentioned above.

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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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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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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.

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Mary's story

I have three children with Autism.

Timothy is 13 and has Aspergers.

Timothy loves Maths and computers. At the moment he is also enjoying photography and everything pokemon.

Timothy was diagnosed when he was 4yrs old. Timothy really struggles with social situations. He will not answer our door or our telephone without prompting. Even if he knows and loves the person on the phone he refuses to chat.

Timothy has really come out of his shell with the new friends he has made at Camp Autism. I think because most of these kids also have Autism and understand his need to sometimes to walk away or ask questions.

Amy is 5 and has classic Autism.

Amy loves everything Tinkerbell. Amy also loves animals.

Amy has only just started talking in the last 2 years. Amy also is lactose intolerant and has Epilepsy. We have not been successful in toilet training with her and it is an ongoing concern as Amy started Prep this year and whilst she has no been bullied yet I wonder how accepting kids will be as they get older.

Kailyn is 3 and has High Functioning Autism and was diagnosed a week before her 3rd birthday.

Kailyn is extremely bright and can write her name and other family members' and has been reciting the alphabet and numbers from age 2.

Kailyn does not understand other children her own age. She gets very frustrated when they act like typical children and not do puzzles, write names and colour between the lines.

Though with Kailyn we had started seeing the signs at a very early age we chose to put our heads in the sand. Three children on the spectrum brought me to tears often with worry of how we would cope, find services etc. Kailyn has also been diagnosed with Epilepsy and Encopresis. Kailyn is partially toilet trained but due to the encopresis and the need for medication to make her use her bowels it is a daily struggle.

I think the biggest struggle for me personally as a parent is trying to find services and activities for my children. Government funding ends when they are 6 and I often wonder and then what? Timothy is already homeschooled because the education system was failing him. I wonder what next. I wonder about where it will take our family and what the journey ahead will be like. We currently live in a small town in North Queensland and I feel we are being forced to move to a capital city to sit on waiting lists with thousands of other families. The need is so great in Australia that there is not enough services to go around.

The most special moments for me in the past few years have been at Camp Autism. It is so nice to chat with other parents who understand the journey we are on. Its nice to see brothers and sisters of kids on the spectrum hanging out and comparing poo stories or laughing at the silly things kids do. But it breaks my heart to hear of the tears the bullying and ridicule these kids suffer at the hands not only of school yard friends but often of their own family members. Hearing that a smack would cure their brother or sister is not what these kids need to hear.

At times like this journey of raising kids with Autism we should be able to find support in our own family. Sadly this is not always the case. For me Camp Autism has gifted not only myself but my husband and children with a new family. A family of adults and kids who know what the word acceptance means, are always there with a shoulder to cry on , and a joke to make us laugh again. People often thank me for the work I do for Camp Autism, what they don’t realise is how much the camps and the families who attend give back to me. At these camps I am free to be myself and my kids can spin, flap, jump, wriggle, giggle and meltdown without fear of being called horrible names.

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Jennifer's story (Part 2)

Jarrod

I have a son with autism and he 4 & 1/2 years old.

He loves playing with his play station game, loves matchbox cars & swimming.

He is really good at counting, play station games & numbers.

He struggles with certain textures, Showing certain emotions & being in busy places.

Sometimes I, as a parent, find it hard when he can’t understand why he can't do certain things, he has no fear which is very frightening at times. Having twins with ASD is also very hard at times.

But then I think about the special moments, like when his memory is awesome, he remembers things back to when he was approx 2 yrs of age. His concern for his twin brother Korbin. He may not show a great deal of emotion, but he certainly looks after his siblings. Or when he compliments his older sister on how pretty she looks.

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Sandy's Story

I have 3 sons with autistic traits/tendencies and they are 12 (HFA), 10 (AS/ADHD) & 8 (ADD) years old.

They love us dearly despite what they might say at times during meltdowns, they love computer games of any description including PS2 and wii and the younger two love running around outside with the neighbouring kids pretending to be soldiers, cops or whatever the flavour of the day is.

My boys are really good at avoiding all responsibility where possible, reading, sports (Master 10 & Master 8 especially), eating (except Master 10 who has serious food issues) and playing games on computers, PS2 or wii.

They all struggle with social interaction with others outside of the family and have trouble understanding social cues like personal space and when to talk/take turns at something.

Sometimes I, as a parent, find it hard when they are all being intense at the same time and my husband who has a much shorter fuse than I do goes off at them which only makes matters worse. I struggle to keep my own temper and my voice even at times and also get tired of feeling like I'm the only one who has to play the adult role and be in control of situations constantly. A self-confessed control freak, I get upset when my boys are having a power struggle and I lose my temper and yell at them. I also get frustrated with having to go through the same things over and over sometimes, and with feeling like my boys aren't learning very quickly if at all about behaviours.

But then I think about the special moments, like:

Master 12 had a sudden language explosion at age 3 when he gave us three sentences at once one morning where previously we had only had the occasional word like "Mum", "Dad" and "Car". He has literally not been quiet since and although that can be annoying at times, I would rather he dribbled verbally as a constant than return to a single word occasionally.

Master 10 declaring around age 5 that he liked "plain" pizza... could only get him to try it because I told him it only had tomato sauce on it, then the neighbour told him it had cheese on it, he stopped eating it but not for long. Could see the cogs turning in his mind as I told him he had been eating it for months and the pizza hadn't changed and was still yummy. He eventually overcame his foibles and tucked into a piece, now declaring that he loved "plain cheese" pizza. It has been a struggle to get him to eat all his life as he simply refuses to try new things and has restricted his diet heavily.

Master 8 comes up to me after a violent meltdown, wraps his arms around me and says "I'm sorry Mummy. I love you". All I want to do sometimes is push him away but I can't do that because he doesn't understand as he has little memory of his recent behaviour.

When all of them use the beautiful manners that we have hammered into them and I get complimented on their good behaviour and nice manners, all the while thinking "if you only knew" :)

Any of them proudly handing me a certificate from school or after school care with their name on it rewarded for good behaviour.

The phrases I live by these days include "you are never given in life any more than you can handle" and "only special parents are given the care of special children like ours, as they are the only ones qualified for the job". I am grateful for my own wacky sense of humour as I feel that is one reason I have survived and been able to get up on my board and surf the tide of autism as well as I have, not that I claim to be any kind of an expert. I am also grateful to my husband for being as supportive as he knows how, and for acknowledging both his and my ASD tendencies and making light of them, as it all helps make our unusual world go round.

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Allison's Story

Kristie with Kelly Nester (Adelaide Newsreader)
at the Autism SA Masquerade Ball

I have a daughter with asperger’s syndrome and she is 11 years old.

She loves music more than anything else in the world. Every day she focuses on her singing and is pretty talented.

She is really good at singing and art. Kristie also painted the picture for the Autism Rainbow Day logo.

She struggles with language and gets anxious very easily. She also has difficulties reading other people’s body language and often thinks others don’t like her when they actually do.

Sometimes I, as a parent, find it hard when she misinterprets what is being said to her, which makes her sad. It is also difficult when she struggles with her school work because she becomes anxious to give something new a go, but she works very hard to overcome these problems.

But then I think about the special moments, like when she sang in front of 360 people at the Autism SA masquerade ball in October 2009. She was amazing and performed like a professional. It was one of those very special and proud moments as a parent.

Her performance:

I love her dearly and when she smiles, she lights up the room. Kristie is our little princess and we love her dearly.

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Jo's Story

Lachlan

I have a son with Autism and he is 6 ½ years old.

He loves reading, numbers, puzzles, board games, swimming, going to the park and mum and dad.

He is really good at reading, math, giving hugs and has wonderful manners.

He struggles with noise, too many people, change without being informed way ahead of time, taking a different route to a place he often goes to (like school) and the most scary of all running away from us when out in public and having no fear of cars.

Sometimes I, as a parent, find it hard when people don’t have the understanding or awareness of Autism like when you are out in public and your child has a major meltdown and people stare or you hear comments about naughty children or when people do not understand that you cannot go to a specific outing as there are too many sensory issues for your child to hope with.

We recently went to a friend’s place for a BBQ and there were about 25 people there and we only lasted 10 minutes before our son had a major melt down due to the number of people and the noise. We were unable to calm him down so we had to go home and some of the people where like “what, you are going just because he is screaming” – they had no idea how hard it was for him. So as you can tell we don’t venture out much but I am hoping one day we might get to Australia Zoo or Sea World.

But then I think about the special moments, like when the children in his class could not believe how well he can read and they love him helping them with their reading.

When people compliment what lovely manners our son has – like when he greets someone at the checkout and says Hello …their name (that he reads from their tag), my name is Lachlan, how are you today? And that person is taken by surprise that he knows what their name is. Or when someone sneezes (no matter whom it is) and he says “Bless You”, and when they thank him he says “You’re welcome”.

When he comes and give you the biggest hug and says, "Hug to make you feel happy".

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Michelle's story

Brayden

I have a son with autism and he is almost 10 years old.

He loves anything involving super heroes & special powers but only the goodies ! He loves Pokemon, Transformers, Bionicles, Bakugan and every super hero from Astro boy to Sonic the Hedgehog !

He is really good at construction, give him lego or Knex and he will build things out of his head that amaze me !

He struggles with school and controlling his temper, he doesn’t like noise around him or too much stimulation or being asked to ‘join in’.

Sometimes I, as a parent, find it hard when he gets out of control and I have to physically hold him down and when he gets sent home from school before 10am, and when he says horrible words to me out of anger.

But then I think about the special moments, like when he has learnt something new or had a good morning at school and comes home beaming with pride, when he sits and hugs me and tells me that he loves no one else as much as he loves me !!


Written By Michelle (SA)
Mother of Brayden (ASD ADHD)

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Zoe's story

Harley and Brodie

I have two sons/with ASD Harley is 14 and Brodie is 11.

Harley loves playstation and Brodie loves swimming at nans, swinging and the computer..

Harley is really good at playstation, online computer strategy games and technology. Brodie is really good at giving kisses to his mum, swimming and going away on holidays

Harley struggles with organization skills, getting off the playstation, doing his chores and the unknown. Brodie struggles with speech/communication, frustration, challenging behaviours and eating non food items.

Sometimes I, as a parent, find it hard when an outing goes pear shaped, when I have to find things to do that suit both my childrens needs, when people comment and stare.

But then I think about the special moments, like when Brodie said mum and nan (his first and only words) and when Harley's got a fantastic first high school report after his last primary school telling me he would never cope with high school. But especially when my mum and I flew with both boys to Detroit, LA and Hawaii and we coped and the boys coped and we had the holiday of a lifetime! x

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Can You Help? Running the Marathon of Autism Campaign

Felicity

Running the Marathon of Autism
By Amy Costin

With April being World Autism Awareness Month it is the perfect time to launch our Running the Marathon of Autism campaign in aid of my little girl, Felicity's, Son-Rise Program (run by The Autism Treatment Center of America) that is day by day taking us closer to recovering her from her Autism!!

Felicity is a full of life 9 year old who has a beaming smile and one of the cheekiest giggles you'll ever hear. Felicity has Autism and cannot yet talk but has a few simple words such as "up" and "mum". Before starting her full time Son-Rise Program Felicity was unable to communicate to us that she was hungry, tired or that she needed to go to the toilet. She would sit by herself most of the time and stare 'into space'... but in just a short time after we began the Son-Rise Program, Felicity 100% toilet trained herself and now loves to be around people. Felicity understands everything that is said to her and willingly gives out hugs and smiles to those around her.


What is Running the Marathon of Autism about?

In 2006 a close family friend, Maryke, ran the Melbourne Marathon for the first time ever - Maryke, mother of 2, who claimed "it was tougher than giving birth," did the mammoth 42km run in the name of Felicity and was sponsored along the way to raise some of the necessary funds needed to keep Felicity's Son-Rise Program going.

This year, Maryke and 4 other amazing women Carley, Jocelyn, Sammy and Nicole, are all currently training in 'marathon proportions' for a variety of major events. These events include the 14 km Sydney City 2 Surf, the 21km Sydney 1/2 Marathon and the 42 km Melbourne Marathon. These inspirational runners who are taking on this challenge are not professional athletes, nor are they seasoned runners. They are women who are mums, work full time jobs and have children of their own but they all have one common passion - Felicity and the amazing milestones she has accomplished since starting her Son-Rise Program 4 years ago.


What is it raising money for?

The Son-Rise Program is sadly not available in Australia. It is run by The Autism Treatment Center of America in Massachusetts and involves at least 4 week long training courses which we, as Felicity's parents and her Son-Rise Program 'directors', need to attend to maximise the potential of Felicity's full time program that has so far seen Felicity prove doctors and other medical 'professionals' wrong. These courses obviously cost money which we rely heavily on fundraising for.


Why is this important?

Felicity has come so far since starting her Son-Rise Program and is the happiest we have ever seen her. We believe that the Son-Rise Program is the right thing for her and even if the amazing milestones she has reached so far are the only ones she ever manages to accomplish her happiness is the most important thing to us and in The Son-Rise Program she has found that.

To find out more about Felicity, the amazing women running for her and The Son-Rise Program as well as ways you can support this campaign by donating please check out our website at: www.intellectualdisability.org
You can also join us at Facebook: www.facebook.com/Marathon4Autism
and Twitter: www.twitter.com/Marathon4Autism

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Lisa's story

Zoe and Anzac

I have a 4 children 5 yrs and under. My daughter, Zoe (5) and son, Anzac (3) have been diagnosed with autism spectrum disorders - PDD-NOS and Autism. My 3rd child, Zannalee is in the process of diagnosis.

Zoe loves craft & drawing (the same thing 100 times) and Anzac loves riding his scooter & bouncing on the trampoline.

Anzac is really good at number recognition, and Zoe is really good at drama, and playing out roles she has seen in a movie.

They both struggle with social interaction, when a word has 2 different meanings, receptive and expressive speech, and many other things, but lets try and keep this positive! - i won't list them all!!

Sometimes I, as a parent, find it hard when I am out in public and people just presume that they are being 'naughty little brats'.

But then I think about the special moments, like when they use their impeccable manners , Zoe made a FRIEND this year, and her friends mother has invited us to some over for play dates!!!

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Bride's story

Chayton

I have a son named Chayton with asd, global developmental delays and food phobias and intolerances and he is 4 1/2 years old.

He loves Thomas the tank engine and anything that has a motor and wheels. He is brilliant with numbers and just loves to play car racing games on the computer or playstation.

He is really good at numbers - anything to do with them really!! He is adding and subtracting and can count to 100.

He struggles with social skills and gross motor skills. He also has not yet been toilet trained although we have been trying since he was 2. But we just keep trying in hope that he will understand it one day.

Sometimes I, as a parent, find it hard when people see him melting down and they stare and tell me to control my child!! It infuriates me because my other 3 kids are there and they are not behaving in that way, so it isn't my control - it is his control which he has no control over!!

I do struggle daily with Chayton with food as he has a lot of food intolerances but also suffers food phobias as well and currently he survives on chicken nuggets and chips, pizza, choc chip cookies and peanut butter toast. I just would like family friends and other people in society to have more tolerance and understanding for them as kids, but also for the parents as it takes a lot to raise our children - but we love them even more in a lot of ways as they are very special.

But then I think about the special moments, like when Chayton first started talking at 3 and then when he first said I LOVE YOU MOMMY - that really made everything worth while! And just for him to run up to me and give me a big hug and say, "Are you happy at me mommy, cos i love you!"! It really just tugs at the heart strings and makes everything a lot brighter.

When Chayton started Prep this year was a big milestone for us and he is settling well and loves his teachers and the smile on his face when you pick him up in the afternoon is priceless!!

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Chantelle's Story Part 2

Hunter and Jackson

I have a son with autism and he is 2 years old.

He loves Sam, Murray, Anthony, Geoff and Captain Feathersword almost as much as he loves his brother, his daddy and me. I suspect he would also LOVE to ask Dora to be his girlfriend.

He is really good at puzzles, waiting for his turn, making Mummy laugh and giving soft little kisses.

He struggles with sensory issues like loud noises, crowds and playing with other kids.

Sometimes I, as a parent, find it hard when I feel torn in two. I also have an older son with Autism and both boys cope differently with social situations and change of routine. Hunter is so much more quiet in his approach to everything and much of our family’s time is focused on my older son who is more rambunctious and likely to meltdown.

I know in my heart of hearts that Hunter is struggling in many situations too but because he struggles silently he is often second on the list. He is second born, second to be helped into the car, second to have a turn and second to be cuddled when he’s having an anxious moment if his brother is noisily having one too. He is not second in my heart though. My heart is big enough for the boys to share equal space and love and it’s apt that that’s where my love for them lives as my heart often breaks in two for the enormous journey they face throughout life.

But then I think about the special moments, like when we recently went to a concert friends of mine in a country music band called The Rough Diamonds were doing to raise money for Autism Awareness.

Hunter had been in meltdown mode and very avoidant of all the noise and overwhelmed at the crowd but then our friends broke into a song that he instantly responded to. It was like he understood the words being sung and he calmed down straight away, smiled his big gappy toothed grin at me and climbed on my knee where danced holding my hands and giggled whilst I sung along (badly). The song is called “Free To Be."

As I listened to the lyrics, “I just wanna be free to be me & smile. Just leave my worries far behind & I’m gonna hold my head up high, feels good to be me. I’m gonna be free to be me & smile. Be true to who I am inside. Kick up my heels & enjoy the ride. Just want to be free, it’s time to be free, yeah free to be me. Feels good to be me.” I couldn‟t help but smile & feel emotional about the perfect fit this song is for my Hunter.

When I think about that moment looking up at his smiley face, into his enormous chocolate brown eyes whilst he danced on my knee to that song, I feel like he just might have enough innate wisdom and understanding of his own journey that he will be ok.

More about Chantelle and her family's journey with Autism can be found here: http://myspecialstorybooks.blogspot.com/

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myspecialstorybooks.blogspot.com

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Chantelle's story

Jackson: A Memorable Moment at the Easter Hat Parade

I have a son with autism and he is 4 years old.

He loves Tom & Jerry, Scooby Doo, climbing trees, all of his friends at preschool and me.

He is really good at kicking goals into his soccer net, helping me stir the cake mixture when we cook together and giving big squishy cuddles.

He struggles with noisy environments, transitions, trying new things for the first time and remembering to always stay near Mummy when we go out which is terrifying as a parent as I honestly feel like I cannot keep him safe.

Sometimes I, as a parent, find it hard when I think about what the future holds for Jackson. At the moment we are choosing a school for him to start at next year and it feels like there is no place he will fit with regards to the education system. Then of course I dare to think about what happens after school and wonder what sort of job he will have, if he will have a girlfriend, will he be invited to parties and most of all, will he be happy?

When every single thing that is new or out of a routine causes anxiety for your child, it really makes you wonder if they can be happy. I lay awake at night thinking about that most. I can take the meltdowns the fighting for every scrap of funding thrown our way, the numerous appointments, the stares of ignorant strangers if an outing goes pear shaped and I can even take the enormous financial burden on the family. It’s the happiness factor that keeps me awake.

But then I think about the special moments, like when Jackson participated happily in his Easter Parade last week, surrounded by friends and loudly exclaiming his love for me during the stroll down the preschool catwalk….. Well when I think about that moment I am filled with a love and a joy indescribable even for me, who as a writer, should be able to describe anything in words. This moment was too big for adequate words. I tried hard to put it into words though over at my own blog and I invite you to take a look at many joyful moments we’ve had together over there: http://myspecialstorybooks.blogspot.com/

Please find an extract of the Easter parade post right here:

So there we were, sitting front row and centre waiting for the Easter parade to start and I will admit to having my usual knots of nerves as I so hoped it would turn out well and not just for me and any need I have to see Jackson do the "right" thing, more for Jackson so he could enjoy the parade like the other kids and for once feel comfortable and happy even though it was a change in his routine.

Jackson's turn came finally, my video camera was poised and ready to go just in case it was a hit and not a miss..... Will he do it? Won't he do it? No one around me would have seen the inner encouragement I was trying to physically send out to will my little guy on and help his anxiety stay at bay so he could just walk down the path holding Annabelle's hand and walk back again. I'm talking about possibly a maximum of twenty steps. Just twenty little steps so many parents would have no understanding of the difficulty those steps would consist of for my Jackson. Twenty steps of sheer terror for many children with Autism and although twenty steps sounds like such a small task, our world is one of only EVER taking ONE step at a time. It's like the Autism Mum mantra I think.... We probably all have the same mantra in our heads for any occasion, any day, any task, any achievement.. anything. One proverbial and symbolic step at a time...

Yet here I was hoping for twenty actual steps. With the expectation of him overcoming the possible sensory issue of the bunny ears. With the expectation he was to hold Anabelle’s hand and guide her along for the twenty steps too and with the expectation he would be fine with all the clapping which is another sensory concern for him from the parents and teachers as they encouraged each child through their twenty steps.

Time to take the first step.......

Huge smile, Anabelle's hand delightedly in his own and off they went. I'm teary recollecting it now. "Hello Mummy!" he called as he competently passed me by on his twenty steps of pure unadulterated bliss for all to see and experience with him. Step ten or so was time to turn around and he paused. A look sideways to the grass beside the path of the parade...... He bent down and found the only yellow daisy in a big patch of green, plucked it from the ground turned around to take the return journey to the class and proceeded to rush over to me again with pretty, sweet, patient and kind little Annabelle still in tow (sporting the most open and giving smile of her own too). Jackson handed his freshly picked yellow daisy to me and I'm being generous by not calling it by it's rightful name of a weed.... but it was simply the most exquisite weed I have ever seen. He looked at me squarely in the eyes, shared a moment just for us in a crowd of many others and said in his ridiculously loud voice, "I LOVE YOU SOOO MUCH MUMMY." I responded through my predictable and joyful tears that sprang up from my always aching heart..... "I love you too Jackson, thank you baby boy."

I am brought to you today by overwhelming joy, happiness, pride and love. Oh did I mention love? My heart is busting with overflowing LOVE! A happier Easter I could not wish for after today's Hat Parade ...

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Jennifer's story

Korbin

I have a son with autism and he is 4 and 1/2 years old.

He loves building with lego blocks, Bakugan Balls, Transformers & All super heros.

He is really good at any building things, such as robots and spaceships with lego.

He struggles with speech & general day to day skills that we take for granted.

Sometimes I, as a parent, find it hard when we are out in a public place and he is having a meltdown and the looks we get from passers by, or people's comments and saying he is just being a naughty boy. Or family & friends not understanding the full extent of autism.

But then I think about the special moments, like when he is laying beside me and I am pretending to be asleep and he will rub my arm with so much affection, or out of the blue he will say "I love you"

Jennifer

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Amanda Asks: Autism Awareness

Instead of the usual Ask Amanda post, this month I am starting with an Amanda Asks column. And it is all due to the fact that April is Autism Awareness Month.

Autism Awareness Month

It all began with the Autism Society of America declaring that April would be Autism Awareness month. They have been pushing for Autism Awareness through April Awarenes month since the 1970s.

But this year is the first year that I have joined in the celebrations. This is primarily because up until this year I have been unaware that April is a good time to talk about Autism.

Amanda asks parents

I want to help build awareness by providing the opportunity for parents to tell their story - to celebrate their children who have Autism, and to talk about the challenges. I want to do this by asking parents to complete the following sentences, then emailing it to me at amandag at learn2bebuddies.com.au:

I have a son/daughter (delete the irrelevant option) with autism and he/she is .... years old.

He/she loves......

He/she is really good at ....

He/she struggles with ....

Sometimes I, as a parent, find it hard when .....

But then I think about the special moments, like when ... (tell us about something great that has happened - an achievement, a hug, a word, a moment that has encouraged you).

Please note: By sending your completed story to Amanda Gray you are giving permission for it to be posted at http://www.learn2bebuddies.blogspot.com during April, 2010. Names won't be used unless the you give permission, and then only first names will be used.

If you want to share a photo, you could either use a picture of your child showing their face, or one where you can't see their face... perhaps take a picture from behind as they play their favourite game. Please note that by providing a photo you are giving permission for it to be publicly displayed on the abovenamed blog. Please do not include a photo if you do not agree to this.

Feel free to contact me if you have any questions.

Amanda Asks Support Groups:

I also want to share information about what different support groups are doing to help spread Autism Awareness. If you want me to mention your event or activity, please contact me.

It all starts with "Light it Up Blue"

On April 2nd around the world significant buildings are going to be lit up in blue to highlight Autism Awareness Day. In Australia, Melbourne's Federation Square will turn blue.

If you want to find out more about "Light it Up Blue", visit www.lightitupblue.org. You can make your own contribution to the effort by doing one or more of the following:

• Change your Facebook profile picture to the Light It Up Blue logo and tag at least 10 of your friends.
• Post on your blog about how you are “lighting it up blue” to raise autism awareness.
• Add the Light It Up Blue logo to your e-mail signature … and type your e-mails in blue!
• On April 2 wear blue clothing and ask your co-workers, schools and friends to wear blue too. Take pictures and add them to our Flickr gallery.
• Bake puzzle piece shaped cookies and frost them with blue icing, then bring them to your school, work or place of worship to raise autism awareness.

And, remember, if you do these things be ready to answer questions. Make sure that if you do not have first hand knowledge of Autism, that you do some reading on the topic. This is a good place to start: www.autismspectrum.org.au


And come back here to hear Jennifer's story tomorrow....

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