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)

ASD Awesomeness

I should have thought up a better title, I should have been writing of this earlier. Actually, no, I couldn't as today is the first of the performances and who knew where this would end?

My son, my oldest, my glorious 14 year old Aspie has one of the main roles in his youth theatre group's play.

My oldest son has seven performances in this very professional production. Today, tonight, tomorrow, tomorrow night, Monday, Tuesday and Thursday evenings.

SEVEN!

Did I mention his role really is one of the most important in the play?

He plays The Beast.

To top this off, starting Monday he has EIGHT exams - his finals for Grade 8.

Pressure? Hell yes, for any child. For one on the autism spectrum? Overwhelming for most.

But not for this boy.

I AM SO DAMN PROUD I COULD BURST!

He aced the first performance, and as we walked away when I picked him up two little girls were talking to the director and excitedly whisper "Is that The Beast? We liked him best."

I cannot wait to see him in action tonight, but even without having witnessed him in action yet I could not be on a greater high.

And he is self-assured and calm about his exams (which strangely is how he has been all year - stresses over assignments, relaxed and  confident in his intelligence and knowledge for exams... go figure) without a sign of anxiety.


This was undreamt of EVER!



 ~Refer early years posts~

But He's Doing So Well!

He seems so normal... He is normal. Normal for a kid on the autism spectrum. What is normal, anyway? Or should I ask how you personally define normal?

He is doing so well. Yes, yes he is. But do you understand the little things we do every day to keep him on track? The things nobody but myself, and maybe his Dad and brother would ever, EVER remember to do?

You should be proud of him. Oh, I am, believe me. Especially as I know the effort it takes both him and us to keep the act up. For it is an act, you know. There are things that are a part of his nature, a part of the syndrome, that just would not be acceptable in this society.

I couldn't do what you do. Um, if it was your kid you could. You would. You don't get the choice.

But he's doing SO well! Do you know I make him laugh? That constantly I make little jokes, or smart comments, I twist and mock and cajole until the mirth explodes and drowns the anxiety in endorphins? Did you know sometimes he is so overwhelmed with the pressure of life that he hits his head and pulls his hair screaming "I can't do this anymore!" Do you know a lot of the time I want to join in? Do you know that the stress can overwhelm every part of his incredible mind, and stunt that beautiful brain? That sometimes I need to go in, soothe, talk, oil those mental cogs with silliness until the frozen fear melts and allows the intelligence to shine once more?

Do you know I worry endlessly about what would happen if I was not here? Who would he turn to, who could take away the pain, who could bring out the positives whilst minimising the negatives? Who knows him through to the truth of his soul and pushes the perfect buttons to make it right?

Who saves him from falling if I am gone?

Who?

Who would see the beauty and the endless potential of a boy who soars into worlds unseen by others all within the mind of mayhem?

But he's doing so well...

Fussy Eaters - A Blog Trail of Hope!

"You never know the impact your blog post will have."

I followed a link this morning from a favourite blog. I must admit the title had intrigued me, especially after my little episode last week. But it was the tale of how not to get your knickers in a twist about your child's eating habits.

Now, I know a lot of Mum's with kids on the autism spectrum drop by here. In fact, this post... which linked to another blog post is written by the mother of a young boy on the spectrum.

Well, we all know how I rely on riding on the coat tails inspiration from other blogs, and this one certainly is no different.

In a warped way I was blessed to be the mother of my TWO picky, fussy, sensory kids. Yes, both, not just my young man on the spectrum. In fact it is the younger son who was by far the worst, and in many ways, still is. Just like his MOTHER.

I was THAT child. My mother, Wise Woman, swore if it was not for Vegemite Saos and Milo milk, I would not be here today. For many years, right into late teens, my diet was unhealthy, limited, and unhealthy. I didn't eat any vegetables except potato (baked, mashed or chipped) and green beans. NO salad vegetable EVER passed my lips. Fruit was an irregular visitor to my digestive system, though Mum could persuade me to eat apple and orange cut up together if drenched in sugar.

You get the picture. My dad, Grumblebum, attempted the force route. I could sit at that table for hours, easily out-waiting him, refusing to touch the now cold and even further unappetising food "your mother has cooked you and by hell, you'll show her some respect and eat it."
Yep, he was from that school. I perfected the go to the toilet/shovel food into pockets of clothing purposely selected for the number of such/hide food in the back of my mouth and in the cavern of my facial cheeks until I could manage to get to the first (toilet) to spit it out techniques.

So, when the universe deemed it suitable to send me two sons cut from the same cloth, well, let's just say I didn't follow in my father's footsteps.

I'm here, I'm reasonably healthy, and I survived to widen my eating habits as I grew up. And so it wasn't a big issue. For me. For my parents it was. And it didn't help or encourage me to change.

Don't get me wrong, I have tried to get my fussy boys to broaden their food tastes, and now, as they are 14 and 12, they really aren't too bad.

To cut to the chase, here is the Madmother (very short) tip list. It may help, it may not, but you never know.

• Imagination - one of my friend's who has a boy on the spectrum creates these amazing scenes for her kids. She calls them "dinner art". Amazing ideas which go down a treat. I only used to make up stories, more when the boys were younger. We would sit at the table, and I'd tell them of the giant who gobbled up all the trees (broccoli) and the good people of the tiny village who tried to defeat him by shooting carrot spears into his mouth. The pea rocks they shot at him... you get the idea.

"Fly away"
Copyright J. Negrin

"Let's go Surfing"
Copyright - J. Negrin. Brilliant mother.

• Mates or extended family members. My children, even now, are far more likely to try something new if it is suggested by a friend or for us, family outside the core group. More the former now they are older. I cannot tell you how many new foods have been tasted and approved all because a friend has told them to! Get over for playdates and include a meal ANY friends who are more adventurous in their appetities. It may not work the first time (though it usually did for us) but persevere. At worst, they get to work on their social skills, and form a stronger friendship bond (and if you use some of the ideas in point one - your house will become the cool one to visit - a little bribery positive re-inforcement for such friendships to be encouraged never hurt).
• Try, try again. Do not force, make it fun. As they get older, explain the nutritional benefits. It took my youngest to get really sick with some horrific virus before he really began to open up to healthy eating. Now he is a different boy. And yes, this is not my child on the spectrum.
• If there are sensory issues involved - cater to it. If they prefer soft food, blend, puree, whatever. Then slowly, over time, introduce the food in a less smooth consistency, more textured, gradually, patiently bringing it back to its normal state. Baby steps. And if rejected go back to the pureeing.
• Wine. For you, not them. Pour yourself a glass, sit, breathe. Kids grow up eating far, far less than yours. Seriously. (And yes, this is the same advice The Gourmet Girlfriend suggested, but it is what I have followed for many moons too: wine for the whine.)

And that is it. 

P.S. If this blog post had any impact or helped, please let me know. For I am still pondering on the future of this blog as the comments diminish. 

My Weekend Ungrateful...

Do you remember the days when you were young and you were the last one sitting, waiting to be picked? Be it sport, or debating, fun or competition, how many of you can still recall that horrific hard, solid lump of sadness in the pit of your stomach as the last to pick goes "I guess you are on our team then..."

Frday my heart broke a little. Friday I had to let go of a another slice of my preconceptions. Friday I watched my son in that very position at a school excursion.

I am struggling to think of the greatness of this week as those horrible memories flood back over and over again. I need to remember they are MY scars, not his, and hope that times like this are not forming their own deep within my wonderful son.

For whilst his buddies ran around the theme park, having fun, laughing, for the most of it my son remained with me. Forgotten by his peers.

If his best mate C had been there, this would never have happened. But he does not go to this school.

My child's achievements are incredible. His last report card of Grade 7 was flooded with A's in achievement and behaviour, the comments were wonderful, positive, even a little awe flowed through the words.

His book is looking more and more like it WILL be published - he is 13... who manages to get a book published at 13???

He is happy, settled in his own skin, content to be him... because to be him is pretty awesome!

I need to realise that this pain and anger and frustration is my own, born of my emotions and feelings. Hell, I do realise it BUT it is so damn hard not to let it flow onto his situation.

I need to remember my ending... the fact that those kids in primary school who always picked me last were the very ones who clamoured for me to be their first choice in high school as both my athletic and academic abilities soared.

I need to listen to my son, who when asked if he felt left out or lonely replied "Why would I Mum? I love being with you, we laugh so much and have such fun."

My scars, not his. I love you Boy 1, and really am trying to let your generousity of spirit flow into my essence... but whilst it is still slowly permeating I will  hide my tears.

This is my weekend really wish I was grateful.

Sorry.

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 One I Didn't Know Was in Here.

I had a whole other weekend grateful post a brewing, about family and going home and the cycle of life.

Then a post popped up in my reader link:

Don't Laugh at ME.

One of my favourite bloggers, Apples and Autobots has a son on the autism spectrum. When I read of Bot I am taken back to the early years of Boy 1, for the similarities are endless. You NEED to read this post. This amazing, eloquent, articulate, wonderful blogger has explained beautifully one of the major issues we as Mums of special kids on the spectrum face. Sensory meltdowns, and the PUBLIC'S reaction to them.

And I am going to add one of my own stories, well, experience not a story actually.

Boy 1 was around five or six. We too were at a shopping centre, but one with open spaces and discount stores, plenty of room and little crowds. Still, if a bad day, not a feasible excursion. The day began as a good one.

We had perused the stores for a little while, and choosing my battles, we were in the last one. Start happy, end happy, at least that was the plan.

Near the front door of the department store was a clearance table full of Harry Potter merchandise. The three of us, MM, Boy 1 and Boy 2 were all surrounding this table picking what we wanted being the Harry Potter mad family.

The automatic doors began to open as someone else entered. It was in this split second I realised Boy 1 was standing in the tiny gap between table, front window and side wall. The doors had safety mechanisms to stop them closing on someone, not to stop them opening and crushing anyone between the door and the wall as they opened.

I screamed for him to get out of there NOW in the second he had to move as visions of him being crushed before my eyes danced in my head. And when I say screamed I mean SCREAMED!

It would hav scared any child, but to a child with sensory issues it was terrifying. Move he did. He ran screaming past me, past the checkouts into the store.

Crying at the top of his lungs "Keep her away from me, she is going to kill me, she is going to kill me."

You can imagine the reaction of the staff and the shoppers, all I wanted to do was calm him and all they wanted to do was protect him from the one person who could calm him.

It ended. I kept my calm as inside I disintegrated emotionally, explained he was on the spectrum, explained to my distraught son why I had yelled when Mummy really only yells at the times she is losing the plot. We went home. Eight years on I can still feel that solid knot of fear and sadness, of dismay and anger. It wasn't that these people laughed when it was all cleared, it was the way they then looked at my child. Flawed, disabled, broken. Never in my eyes, but that is certainly what shone through theirs. And right at that point the other emotion I remember is hate. I hated how they judged him by a label and by one incident, I loathed the path ahead when so many would do the same again and again. I wanted to SCREAM at them "Do you know him, truly know what a really special boy he is? Yes, he is facing challenges, but can your kids soothe any distressed animal on this planet by merely speaking to them for a minute? Does your child tell you they love you every 5 minutes and treat you as if their world orbits around you? Do they captivate the hearts of those who are supposed to be calloused professionals, yet bask in the brilliance of his smile and the sharpness of his mind? DO THEY?"

Of course I did not. I merely thanked them for their patience and walked away.

So, this is my weekend grateful I am grateful for people like Apples and Autobots who explain far more gracefully than I ever could. I am grateful for so many people who take the time to share, who let their open wounds bleed to educate and advocate, and for the wonderful kids like Bot, and Boy 1 and so many others who make this world an incredible place to be.
And I am so truly grateful for both my sons, my oldest with his incredible goodness, heart and spirit, my youngest with his compassion, support and brilliance.
 
This is a blog hop, though you may be now feeling like it is a lecture. Go, read some lightness and fun, laugh, smile, live. Just keep in mind the next little boy or girl you see having a bad moment may not be having a tantrum because mummy didn't buy what he/she wanted, his/her whole world may be spiralling like a kaliedescope of out of control, overwhelming images, noises and sensations inside that little boy/girl brain. So instead of judging or laughing, maybe go over and ask how you can help a mother who is doing her very best to keep it all together?

This my weekend grateful.

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.

Blatant Promotion of Fundraiser!

Don't you just hate it when bloggers do this? Blatantly promote something of interest/benefit to them and theirs?

Well, tough. Cause I am doing it anyway and it is for a good cause. You know how my last couple of posts have been from ASD world, where mothers wear self-centred t-shirts, and others claim to push the boundaries of what is acceptable in the special needs world? No? Go back and read it then. Well, anyway, I have a compatriot, a cyber friend from this world. A congenial companion on the rollercoaster ride of autism. A soul mate of sorts, who thinks outside the square and pushes those boundaries way out.

She is a bad mamma jamma, advocating, educating and doing far more good in the world than a Madmother ever could.

Well Kirsten, my friend, is running in the City 2 Surf on August 14th. She is running for her daughter, my son, and the many who are nameless in the ASD world. She is running to help give these kids a future. She is running for the ones who need that extra help to reach their full potential, the ones who find it harder in this fast world, the ones who struggle if they don't have people to aid them in their journey.

She is running for this child...

And this one...

And so many others. So please, go to her page here and pledge or donate. As little or as much as you can. Because intervention can mean the difference between joy and pain. And every child deserves joy in their lives.

It's All About Me!

When Boy 1 was a lot younger, and I had not long joined an on-line parenting website, this was a running joke with a group of the Mums.

As parents of children of varing ages all on the autism spectrum, it was ALWAYS about them. These kids are very self-focused at times ("He bumped me, he is trying to kill me!") and in the midst of interventions and therapies and lots of stress, rushing, juggling and parenting, it was never about us, the mums.

And so it began. "It is all about me." Whenever a comment was made on msn or in posts the automatic response would be:
"Well, you know it is all about me."

"No, it is all about ME!"

"Ah, ladies, how many times do I have to tell you? It is all about ME!"

We even discussed getting shirts.

 

Can you imagine the response a bunch of grown women wearing these might get?

God, those were the days.

Oh, and you do know, don't you?

IT'S ALL ABOUT ME!

I am Different, We are Different. The ASD Journey.

We have always swum against the flow, run against the crowd. In my heart, and that of my husband, we have never felt the standard or popular approach is what would help our son. OUR SON. Not the teachers' nor the specialists', nor other parents'... OURS. And for that many have belittled, derided and questioned our approach. Our outside the square ideas and ideals, our belief in our child.

I must admit it grates when someone can't see the trees for the forest, when others still don't get it... because in all honesty when I look at how Boy 1 was in the early days, and how he is today I know what we did was right, I know he is far beyond what any of those outsiders thought he could ever be, I know he is growing into an incredible young man, one his parents always knew he would be.

So, question our approach all you like, mock, deride, or just keep that mind closed. For we have our justification, we have our confirmation... we have a wonderful, confident, happy son who has Asperger Syndrome. Just look at the smiling kid from the photos in the last post.

That is all.

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 

Blog Gems

I don't know if you lot know of Blog Gems.

How many posts do you have languishing in your archives? Great posts that will never be dusted off and brought out to breathe again! Maybe you created fabulous content before you had lots of followers, or maybe you have been blogging for years and your current followers haven't seen your older material.

Blog Gems - Air Your Archives is a forthnighly linky list where we will give a prompt and you select a post from your archives that fits the prompt.
 Some of the more observant of you will notice that the link under the name and the link in the button are different. That is because a group of the creator's blogworld friends are helping her out by hosting the fortnightly hop. You see Jen's little man, HRH, has just been diagnosed with a serious condition, add in the fact he is on the spectrum (just like my gorgeous Boy 1) and life is a little difficult for the HRH family at the moment.

So, go to Mommy To Two Boys and join up to the blog hop; this one is a call out for some fun or fluff or just downright silliness. Something to help loosen the stranglehold of worry around the HRH household. And maybe stop by Jen's blog to add a little blog love? I know I can count on you lot.

And for those of us who still have a sense of the ridiculous on this ASD rollercoaster - here's one just for you. Please don't click if you don't find the funny side in some of the darkness, you will be offended.

Weekend Rewind: December 2009 & 2010

Am jumping on the rewind bandwagon again (thanks to Allison @ Fibro - click on link above to join). But am being naughty and adding two links. Simply because I cannot choose between them. December 2010 was hard... let's face it, any month after October 2010 has been difficult, but December particulary as the first Christmas without Wise Woman in our lives. The post I have chosen from this year is one of a little fluff and lightness - my reworking of the old classic:

A Night Before Christmas

Just to put a little stimming into your lives, lol.

The second is one from the heart. Memories of my wonderful Yee-Haw Grandma. Written in December 2009 when my blog was still new-ish.

Drive

Enjoy.

P.S. I lost my Grandmother just prior to her 91st birthday. I am pretty sure beating her in age was part of my Wise Woman mother's ambition and once the milestone was passed she felt she could let her hold on life loosen. Mum had turned 91 two weeks before we lost her.

FYBF - Tales of A Dragonfly Future.

In Japanese culture, it is believed the dragonfly is symbolic of success, victory, happiness, strength and courage, and represent light and joy. It is a reminder that we are of the light and can reflect it in powerful ways if we choose. Seeing through illusions and allowing you to shine with new vision. A symbol of transition, change. From murky depths to shining light.

He is the dragonfly. Transitioning from murky hidden dark childhood into brilliant bright irridescent youth. I watch as he soars to new heights, waiting for the pause, the hesitation of new wings, prepared to provide a safe landing if he falters and falls. It is not necessary. He flits past my line of vision, pausing to hover close, brushing my fears away before flying off to new worlds. Returning, always returning home safe from his latest adventure. Ready to fly once more in the brand new day, pushing past old boundaries and anxieties, revealing unforeseen strength. He radiates happiness from his very soul, deep contentment down to the core of himself. He is the dragonfly. He is MY dragonfly. As he soars my heart soars with him.

 

 

Nowadays I feel more and more distant from others on this ASD journey, saddened to see their struggles,no longer able to relate to the despair. For all that fills my eyes is the blinding brilliance from a myriad of reflections of his rainbow wings as he flies higher and higher bathed in happiness and hope.

Dragonflies have always been his thing. Since a very young age Boy 1 has been enthralled by these magical creatures of the wing, and it is what we have given to those who help him as gifts of thanks to remember him by. Who ever knew how prophetic such a symbol would turn out to be. Always dragonflies, everything dragonflies...

 





 

ASD - So, You're an Expert, Are You?

This is not the post I am meant to be working on, nooooo. There are two posts I was supposed to be focusing on today: one for my first born's yucky birth story for Tork's award comp - which I will add I came runner-up in with the first award presentation; the second actually for the usurper winner of said award: Romina over at Martyrhood. Cause she is havin' a ba-aby. And a breakdown. And needs someone to curse and blaspheme and shake stuff up a little whilst she enjoys a teeny pause in blogging.

But I'm not. Why? Well because I am an avid reader of other blogs and a lot of times my ideas and inspiration strike from a thought provoking post by one of them. Today it was this one. Heartbreaking, especially to one mother of a child on the spectrum to another.

See, I have this great fear. It may well be an unrealised concern, but it is something that keeps me awake at night. You see, my oldest son has Asperger Syndrome. He is thirteen. And in my eyes he is something of a legend. If you are a regular here you will know what a big heart and amazing depth my oldest has. He inspires most who get to know him, he makes my heart fill with pride. He is generous, loving, articulate, confident, happy, intelligent... just all round amazing really.

To think that someone who does not know him may well take one look at his diagnosis or label and presume to be able to categorise and judge him scares me senseless. And people do. So-called experts do. Other children do. And with their judgements come assumptions, and interferring and demoralising. My fear is that some ignorant person will undermine all the positiveness we have encouraged, pushed and persistently re-inforced in my child. The pack mentality people - "seen one, seen 'em all."

You know what? EVERY ONE OF THESE KIDS ARE INDIVIDUALS. They can no more be boxed or grouped or even taught or dealt with the same way than ANY OTHER CHILD. They are unique - every single one of them.

Do not assume because you read or train or know Joe Blow's second cousin down the road who may be ASD, or was it ADD... DO NOT DARE TO PRESUME YOU KNOW EVERY KID WITH AN ASD DIAGNOSIS. Because you do not. I do not. What works for my child could well not be the way for another, in fact it may be the worst thing for another. All I can do is tell you about my son, how he is, what helps him, and maybe, just maybe you can take some of it and see if it works for another. Same as I listen and learn and take from others what I think will work for my child. But there is also a lot I disregard because it will not.


All I can say to you all is to follow your gut. Whatever your mother/father/sibling instinct tells you to do - go with it.

We did. Or more to the point, I did and the rest just trusted me. I fought against specialists, educators, other parents, you name them, I probably pissed them off.

And it worked. It helped him - MY CHILD - and in some small way contributed to the glorious young man in our lives today.

Seriously - who else will know these amazing kids as well as their own families, eh?

Off soapbox.

Oh, and I'll give the last word to my glorious child.

Four years old and seriously aware of how others treated him he had a dream, a bad dream, a nightmare: "Mum, I was in this box and I didn't fit but the teacher kept pushing me in and closing the top. But I didn't fit!"

The Monster

Written many moons ago, in the early days when things were dark. After reading some posts on a parenting site I thought it may be time to post it again.

The Monster

I had a little boy once

Who truly was so dear

He cuddled and blew raspberries

If anyone was near

His eyes were shining amber

His smile, oh so bright

And if you had him in your arms

He snuggled in so tight

But then a horrid monster

Did steal him right away

And never sent him back

Not since that very day

Put in his place a new boy

So fearful and so scared

Eyes all dim and worried

Loud noises in his head

He bangs his head and screams a lot

Will punch and yell and shout

And if you try to hold him

He always lashes out

The memory of my first boy

Still comes in dark of night

When tears they overcome me

And I lose all will to fight

But I will find this monster

I search with love all day

And slowly bring my boy back

This monster, it will pay

Oh monster known as Autism

You'll never win this fight

I may be battle weary

But a mother's love shines bright.

 

 

 

 2006

Swings and Roundabouts

I have recently added a couple of new finds to my blog roll. I seem to go in cycles: you know... Full tilt, riding that white pony up and down on the ASD roundabout, researching, reading, being proactive; to falling in a denial heap in the silver coach section, sitting on the bench unable to move, discuss or even mention *shudder* Asperger Syndrome. It is quickly approaching a decade of being on this ride, and even the strongest of us end up with motion sickness after this long. Round and round, up and down, faster, slower, spinning ground...

Ah, but back to my finds. I follow a wonderfully informative, helpful blog,

 The Thinking Person's Guide To Autism

and it is through this blog and its myriad of contributors that I find many of my new haunts. It is via a wonderful link to an open letter that I have stumbled onto Pia's blog:

the crack and the light . She writes so eloquantly of the emotions and battles we parents of the special ones face. I am reminded of how the fire can burn from a mother's love and quest for answers and help. Memories of the fight we have waged for ten long years are re-ignited. Don't get me wrong, I have not forgotten the campaign nor abandoned my role as his advocate. It is just sometimes the heat is not as intense, and other struggles take priority. Sometimes I cannot even read of another's ASD journey, sometimes I am tired.

Sometimes it is good to be reminded of how it was. Sometimes it is necessary for us to now see how it is today. Go, have a read, it is pretty powerful stuff.