World Autism Awareness Day 2013

Today, April 2nd, in fact EVERY April 2nd is World Autism Awareness Day. It is a day specifically set aside to educate, inform, share autism awareness.


The thing about having a child diagnosed with autism is beyond the grief, shock and disbelief, you get the "he/she will never" list. For this special day I thought I'd share you some of ours:

• "Shame it was not 20 years ago and you could place him in care and start afresh" Speech Therapist when he was 3. This was less of a "He will never" and more of a "He is so badly broken you may regret him..."

• "You are an overbearing, obsessive mother who cannot admit her son's shortcomings and is unduly scarring him in the process. He cannot learn." District Head for Special Needs for our area in a placement meeting when he was 6.

• "Why does my child have to put up with a special needs child in his class? It is a drain on resources we could use to push him higher." Parent to teacher, Grade 6. He was 12 and puberty had hit. Anxiety and meltdowns were occurring on a weekly basis. Weekly, not daily. AND we had funded an aide OURSELVES to help and to lessen any impact on the other children

• "No, we didn't put him in the Eduquest team because of his autism. He would not have coped." Grade 7 teacher who should have known better by then as he was achieving amazing things. As the principal of the school this competition was held at said to me a year later "You do realise he probably could have won?" ... yes, yes we do. We knew that at the time but you pick the battles you will win, and not the ones where ignorance will never be changed.

And then we come to the now. All those dark times where you wonder "Is it worth it?" "Is this making a difference?" "Are we doing right or are we putting him and us through all this stress for nothing?"... let me tell you in our case, and yes we wondered all of that many times, and other's words echoed consistently through our minds, it is a resounding "YES!"

This is what I posted on a Facebook group page earlier this week:

This is the boy who was told he could never learn, would never socialise, had an intellectual impairment, and whose sensory meltdowns were legendary and incindiary. This is the boy whose family always believed in him, treated Asperger Syndrome as differing abilities not a disability, who always set the bar higher so he could soar...

This is my now 15 year old performing a monologue in front of an audience of 60, a monologue he chose, directed, acted and blocked. This is my Super Aspie Boy:



My son. My amazing, compassionate, talented, confident just turned 15 in January son who has Asperger Syndrome.

Is it all worth it? You tell me.

World Autism Awareness Day april 2, 2013. Differing abilities, not disability.

A very, very proud and totally in AWE of her boys (cause her youngest rocks too)

The Art of Friendship... Or How To Make a Friend in an Autistic World.

Friendship. Something a lot of us take for granted. Something we all want, but for those on the autism spectrum, something that seems, at times, impossible.
It seems this topic is a hot one this week.
One of my favourite blogs, the crack and the light, addressed it a little ago.

Autism and Empathy, only a few days later.

And then Parenthood had a massive reaction to their episode: Tough Love (not available in Oz yet).
More discussion on this episode, and a great article, here.

One of the diagnostic requirements to be assessed on the autism spectrum is (as per Autism Spectrum Australia) :
Impairment in social interaction
May include:

• Limited use and understanding of non-verbal communication such as eye gaze, facial expression and gesture
• Difficulties forming and sustaining friendships
• Lack of seeking to share enjoyment, interest and activities with other people
• Difficulties with social and emotional responsiveness

Friendship does not come easily in an autistic world. Social skill impairment and obsessive interests make it hard for the child to connect and make friends. Add in language difficulties and self-focus and *boom*,  you have a nearly impossible friendship cultivating experience.

And it is, as parents, our deepest desire, OUR obsession, our dream for these kids, for whom life is already far more challenging than your average joe, to have a friend.

We do not, like some, want the most popular. We do not yearn for the cool group acceptance. We just yearn for them not to go through life alone, lonely, isolated from peers.

It is why that episode of Parenthood has hit home for so many people.

A friend.

A lot of my regular followers may be sitting here going: "WTF? HER son has a friend! Her son has more than one!"

And they are right. We were lucky in a way, we were well on the trail of diagnosis when Boy 1 was very young. We also were blessed to be able to think outside the square of those days. We were given little guidance, and no information. One of the few things recommended to us by our paed was to foster one-on-one friendships. So we did.

To get to the bone, the advice I would offer to others today is this.

1. Encourage friendships outside of group settings. Arrange playdates (for the young) or social excursions (for the older) ONE_ON_ONE.
2. Be open to parents of other children. You may be surprised at how supportive they may be of a friendship. Fear comes from ignorance, we chose to be loud and proud, open and informative, all questions welcome and answered.
3. When a connection/friendship is made, enforce "friend" free days at school. The very intenseness of these friendships (and let's face it, our wonderful spectrum kids are VERY intense) can be what burns it out. The pressure on the other child, hell, on both of them, can be massive! We instigated this at least once every few weeks. This was more in the younger years, as they get older they manage it themselves if given the skills to see and acknowledge the need for personal space. Make sure you also explain to teachers and parents why you instigate these. We always found they not only understood, they appreciated these actions. And to watch the two run to each other the day after, pure joy. (I always found it refreshed and strengthened the bond in our case).
4. Teach social skills. This is a big one. We actively, in every situation, explained to our son what the expected/accepted social norms were. Still do today at 14. Most of them he has retained (but they need to be reinforced - apparently, a lot of children with ASD regress in behaviour during teenage years. This is not only due to hormones, puberty and typical teenage angst... it is also because we, as parents, go "Phew, he's got those ones, now we can breathe!" Uh-uh. It is  proven that kids on the spectrum do not keep learned behaviours until their EARLY 20's! Yikes! But yeah - keep on drilling 'em in), some of them he is still working on getting. Small talk is a big one he struggles with ("What? You don't want to know all the details of string theory?").
5. Do not be disheartened if at first you don't succeed. It is hard to find another they click with. This goes for ALL kids, on the spectrum or off. It is just a little more limited a pool for those on the spectrum.
6. Realise that kids are accepting. If you work on them understanding when young, the odds are they will still understand when older. Boy 1 has many peers who, whilst not friends, are not enemies either.
7. Breathe. And do not cast your social expectations and beliefs onto your child. Hard, I know. But important. It is their journey, not ours, and all we can do is cheer from the sidelines no matter what or with whom they are playing.

As I write this Boy 1 is at a sleepover at one of his best mate's houses. HE is finding High School hard. He has had this friend by his side since Grade 3, to laugh with and relax during break times. To support and be supported. Now they are at different schools, and whilst Boy 1 likes his new school, it is the social side that is suffering. I see it in the tenseness of his body as he treads carefully through the school week.

But the nice thing is that his mate feels somewhat the same. The last two weekends these friends have been together. This friendship, like his other mate C, is strong enough to survive the different schools. But it is hard for both of them right now, finding their feet. And I think they appreciate each other that much more.

S, Boy 1, C, Boy 2 - January 2012

We know we cannot force him to make new friends. At this teenage stage, we can only guide carefully, and support him. It is harder to meet new people and make new friends when older. And we have to allow him to take his own path. In his own words (as we gently push him to unfold those beautiful dragonfly wings once more), "I am taking things from a more observational perspective for a while." Fair call. For now.

Ah Yes, The Autism Hasn't Miraculously Vanished You Know...

I sing his praises so much you could be forgiven in thinking he was out of the spectrum, but of course he is not. He is doing well, so very well BUT it is incredibly frustrating when the fact he has Asperger Syndrome, will ALWAYS have Asperger Syndrome (AS), seems to be forgotten. Or ignored.

Big Boy & Boy 1 - Byron Bay
Copyright Madmother

The pressure at the moment is immense. We are coming up to the last week of third term and the work is snowballing. Why they do this is beyond me. Even Boy 2, who does the same work as Boy 1 though is in the grade below, Grade 6 (in a composite 6/7), is finding it terribly stressful. Tears of frustration are becoming the norm in this house.

Last weekend we had meltdowns, trigger tempers, tears. This week has been much the same. And it could have been avoided with a little forethought.

Boy 1 had a week off, the week before last. The whole family went down with some nasty virus, but he was hit the hardest. The school knew, because it was from school I picked him up on the Monday, green as the grass.  So he missed a week.

On his return the following week this is what he was hit with:

• Poster for his marketing/technology poster due on the Wednesday, he found out Monday afternoon. Given extension to Friday.
• Rough draft of debate due Friday - AND they put him in as THIRD speaker for the negative! WTF? Who in there right mind would do this to a child on the spectrum? Debating is hard enough, but THIRD SPEAKER? First speaker, maybe he would cope, but never in the think on your feet last rebuttal final speaker position...
• Science experiment parachute construction due Wednesday.
• Thursday off school at college orientation day.
• Assessments and class withdrawal by education department OT and also another session of assessment by physio.
• LOTE test on Friday sprung on him as he missed it the previous Friday.

Yes, I picked up a boy in tears on Friday afternoon having missed first break and part of second (thus not eating as much as he usually does - which is a part of his routine which keeps him settled).


Boy 1 Sept 2011
Copyright Madmother

 I just cannot comprehend how a school could not see this was setting him up to FAIL. There is no way possible for us to have managed or prevented such, and to be honest I really felt like letting them reap what they have sown for I feel they forget he is still a young man on the spectrum. Yes, he is amazing and doing so very well this year - so what? You want to bring him back down? You want to pull all the struggles back into the light?

And they wonder why I get frustrated with the system. The bloody system doesn't work!

Note: Big Boy and I went in first thing Monday morning. Big Boy was very proud of me for no teacher was harmed in the making of this post. Yes, I kept my cool. On the outside.

The Beautiful Words of Wisdom from a Deepak Boy.

Driving down the mountain to pick up Boy's best mate C for a few days, I asked my oldest what he would say about Asperger Syndrome if he was trying to explain it to a room full of people. Now, you need to remember he is only 13 and still finding his path on this journey. But I was curious, after reading another blog and discussion on the topic, as to exactly what he would say.

Boy 1 today - Copyright Madmother

"It is embracing your own kind of normal" he begins, "Whilst there are things it makes me struggle with, it also gives me a different outlook on the world and uniqueness creates greatness." At this point I am struggling not to tear up.
I ask him what would he do to explain it to people who don't know anything about Asperger Syndrome, to pretend he is a motivational speaker (which he dreams of), in a big hall with lots of people who have no idea about ASD.

He is quiet for a little. I ask him if it is too hard... "No, just unexpected and I need to think about my answer."

He is silent for a moment longer.

"Asperger Syndrome means you are different, not bad or good, it just means you are different. You stand out from the rest. You should enjoy it because it means you are a unique individual. It also means those hyper-senses can be used to your advantage.
Keep an open mind and you may learn new things. I would tell them about the things I found hard when I was younger, like noises and changes, and writing. I would also explain that these things are less hard now I am older. They also need to think how they are different and how it would make them feel if people teased them or tried to make them feel bad. Maybe if they talked to or asked us kids on the spectrum they would find out we like the same things and can be friends. Everybody needs friends. I am really lucky with my friends.

Do you think that would be good Mum?"

Yes, my son I think that would be very good. If only we could teach everyone to embrace the unique, wouldn't the world be a wonderful place? I adore my own little Deepak, he makes this world a positive place.

On this same note, a friend on Facebook just this minute sent me this link, ties in nicely methinks (though about ADD, it also resonates for ASD).

VIVE LA DIFFERENCE!

Parenthood Review - Maybe I should do this weekly?

Hello again. It is time for me to once again address this week's episode of the Ron Howard acclaimed series: Parenthood. Well, the bit in it that addresses Asperger Syndrome and its accompanying issues any way.

Yes, again. Stop rolling your eyes, I am entitled to my opinion thank you.

Credit: NBC

Last night's episode here in Australia contained an epic emotional meltdown in the emergency department of a hospital. To summarise briefly, Max (the child with AS) and all of his extended family (parents, sibling, grandparnets, aunts, uncles, cousins and various partners along for the ride) were assembled waiting for news of his cousin, Amber, who had been in a serious car accident and was undergoing surgery.

Withing three minutes of the beginning of this episode Max and Adam have a confrontation as Max appears to show absolutely no empathy for any needs other than his own.
"I wanna eat"
"Right, let's see what they have here."
"No Dad, you said that we could go to get pancakes
"Hey"
"and now I've been here for an hour and a half
"Hey"
" and I wanna go."
"look at this, this looks good,"
"No I don't want a danish
"Max, take it easy. This is one of those times where we have to be patient, okay. We're here for Amber and Drew..."
"No. You said that Amber was not going to die..."

You can see where this is going, right? It escalates into Max shouting, "I'm hungry! No Dad, I don't care about Amber right now. I'm hungry and I wanna eat now!"

Of course his Grandfather then yells at him, which takes it even higher... Max tells him to shut up, lashes out at his mother physically... and so on and so on.

Of course we all compare this child to our own, especially those diagnosed with Asperger Syndrome.

But, everyone needs to keep in mind IT IS A SPECTRUM! I watched this episode and listened to Adam talking to his son about empathy, what it is, how to act, and I can tell you I am with Tony Attwood on this one...

At a conference I attended many moons back, Attwood stated: "It is a misconception that these children do not feel empathy. They feel empathy, but have difficulty expressing it.

We have an emergency hospital room story of our own. My mother. Another fracture in her spine. Along with bleeding from her bladder. A large hospital in the capital city of our state. We arrived at 6pm, and were still waiting for her to be admitted at 10pm. My oldest was around the age Max portrays, maybe a little older. I asked Big Boy to take them home, and I'd book in somewhere for the night. It was an hour's drive to return to our mountain.

Both my children refused, point blank. Both stated unequivocally that they were staying to make sure their Nanna was looked after and settled and then we would all go home together.

BOTH. You could not have picked the child on the spectrum that night. Amidst, noise and chaos, blood and screaming, flickering fluro lights and stressed families they were calm, determined, supportive. Of me, of my mother, of each other.

And so that scene and THAT meltdown was one I found totally foreign. And yet I know others related, and I know it is yet again a case of informing, educating and for the drama, worst case scenario.

Boy 1 & 2 May 2011: Credit Madmother

So what did I get out of the show last night? Gratitude. Thank you God for giving me this amazing child, for both my incredible sons. Thank you for his heart, and strength and compassion and EMPATHY. And thank you for this incredible journey and experience. It sure as shit ain't boring!

Done for this week, and as it was the season finale who knows when the next will be.

Oh, and that night at the hospital? We arrived back to our beds at 2.30am.

Parenthood - The Day After.

If you live here in Oz you may have watched last night's episode of the Ron Howard hit show "Parenthood". If you have a child on the spectrum, especially one with Asperger Syndrome, you may have wanted to jump through the television screen and repeatedly thump the father of Max, the young boy portrayed on the show. The character is a child diagnosed with ASD - specifically, AS.

Max Burkholder as Max Braverman in Parenthood

"Some people have disabilities Max..."

"For you Asperger's is one of those tough things..."

By this point I was yelling at the television, believe me it wasn't pretty.

Then I stopped. For this WAS the reality so many live on this rollercoaster of emotion. This WAS an accurrate portrayal of a father in pain trying to connect and understand this new world early post diagnosis. This WAS truth in television.

Would I ever use those words to my child? Hell no, but we have been on this path from a younger age than this character. We have seen the gifts as well as the hardship, we have lived through the dark days and are now basking in the light.

It is painful and hard for a parent to let go of THEIR aspirations and dreams for their child, not realising that even without Asperger Syndrome those aspirations and dreams may never have been those of the child. And sometimes what we end up with far surpasses anything we could have ever aspired to.

I referred in a past post to a poem Boy 1 wrote when he was seven. We (he and I) have decided to share it again (just remember it is copyrightfully HIS people - if you wish to use it ASK)...

Rainbow Life

You may think I’m different

The way I think and play

But wouldn’t life be boring

If all was the same way

 

See I will change this world

A little bit by bit

And when my life is over

This will be my gift

 

I’ll leave the world a thinking

A mix of logic and my dreams

And there will be no limits

Nothing will seem extreme

 

Think of it like ice cream

Some are just vanilla

I’m a rainbow swirl

All colours a shimmer!

Copyright Boy 1 2006

 

 

Look beyond the diagnosis, look beyond the intervention, the therapies, the anxiety and obsession. Look at what you have, or we have, or your neighbour/cousin/schoolchild or joe blow in the street.

 

Rainbow swirl. Pretty damn special. By the end of the episode the father is slowly realising he is wrong in his approach, that his vanilla viewpoint may not be the only one. I hope the storyline continues down this path, even if it meanders a little off track.

 

Maybe I should drop Ronnie a line, just to make sure. I'm sure he'd appreciate a little insider knowledge from a 

World Autism Awareness Day

That is all.

Go here for info.

Earth Hour and the "Oh Crud" Factor

Earth Hour. Pushed, promoted, publicised, principled. Boy 1 is a mad environmentalist, the sort of kid who picks up litter, ANY type of litter, wherever we go. The one who constantly discusses our impact on our home planet and instructs us in ways to minimise it.

Earth Hour. Where ALL the lights are turned off. Earth Hour. Great idea. Except if you have a boy with Autism Spectrum Disorder with a great fear of the dark, yes, even with candles and torches and camping light thingys. Even sometimes with Eldred hovering protectively.

So on a night where Big Boy is out on one of his rare social evenings with the boys, and the wind is blowing and howling around the house in the clouds, was this ever going to be a good idea? No. First gust driven flicker of a candle we had hysteria. Lights on!

Sorry Earth, we tried and failed. But hey, at least you have a boy who is dedicated to improving your health on a daily basis, not just a once a year warrior!

For my Sunday Sessions I'm dedicating my selection to a Wet N Wild adventure where I and my family are finally meeting the wonderful Jemikaan and her lot! Woot!

Thea's away this week having some friendship fun herself so just add a comment and link here if you want to have your own Sunday Session!

My oldie:



My Newie (just change the words to day, eh?):




WooHoo... Here we go now!

Weekend Grateful: Here's One I Prepared Earlier, LOL.

 
Getting up early must somehow stir up my naughty gene. I am writing my weekend grateful post for Maxabella Loves... a week early! How will I know what I'm grateful for, you ask. Well, because it is something I am always grateful for, and in a way links into last week's post. Or this week as it is right now. Confused? Don't be.

This week I am so very grateful for all the mothers, parents, bloggers who post about their journey on the Autism Spectrum rollercoaster. As one myself (though this blog is much more random than a lot of others - use the search function and type in ASD if you wish to see my dedicated posts on OUR journey), I also feel indebted to the paths that lead me to others who understand the uniqueness of our lives.

So thank you to Maxabella, and to Allison @ Life in a Pink Fibro, and to the many others in the past who have taken me gently by the hand and led me to these blogs I so need to find. Last week I found two more blogs to follow in these hops. And I am grateful, so very, very grateful. And only others in this AWETISM world know how very much.

Do You Remember The Autismness Posts?

I seem to be meeting more and more people who are beginning their journey into the quicksand of special needs. Early last year I posted a series of posts about our path and experiences.

The Road Less Travelled 1 - The Tale of a Boy & his Journey into Autismness

The Road Less Travelled 2 - The Tale of a Boy & his Journey into Autismness

The Road Less Travelled 3 - The Tale of a Boy & his Journey into Autismness




Be warned, they are long and emotional. Why am I posting these? Well, as I said, I am finding more and more people on this or similar journeys and I think it helps to read of another's experiences. AND because I am working on no. 4 in the journey. I think people need to see the other three before reading four.

And let me tell you this one will be worth looking at. Just sayin'.