My Grandmother – The eternal gardener.

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When I think of my grandmother, I remember a woman who was very set in her ways, very regimented and extremely routine based.

gardnen 1A woman who rarely seemed to smile yet held a deep sense of commitment to family and an immense passion for growing flowers.

As an avid gardener, she could always be found, out in her field of flowers, and when I say always, I mean always, as in each and every day, come rain, hail or sun blistering heat so hot that it could give a person sun stroke.

Yet despite her love of being in the great outdoors, she rarely left the comfortable familiarity of her own land.

If anything had to be gathered in from the outside world, such as groceries, she’d write a list and send my grandfather out to fetch them.

As a child, I had assumed that everybody’s grandmother’s behaved in this way and that older women simply did not like having to be bothered with such tasks.

It is only now as an adult, that I am able to look back and wonder whether or not her actions were driven by a strong inner need for familiarity, routine and the desire to avoid non-essential social contact.

gardenerI’d love to have been mature enough to have asked her how she truly viewed and felt about her life before she passed away.

I can’t help wonder how such a conversation between the two of us may have gone and whether or not  we would have found our much-needed piece of common ground, upon which we could have stood together, while gazing out at all of her beloved flowers.

 

Sometimes, when you’re busy being a special needs mum, you need a gentle reminder……

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Sometimes, when you’re busy being a mum, you forget how keenly your words and actions impact on the lives of  your children.

Last night my lovely daughter reminded me of this in the nicest possible way.

You see, over the course of the last week , we’ve both come down with a truly horrible flu.

My daughter came down with it first and after two days of coughing and feeling utterly blue she woke me up in the middle of the night to tell me that her head felt like it was exploding on the inside.

Without thinking twice I jumped up out of bed to check her temperature and then gave her some juice and some paracetamol.

Once those few things were done I invited her to snuggle up with me in bed and promised her that I’d watch over her all night.

Not long after she’d settled into my bed she rolled over and said;

“Oh mother…. I do believe I may well be in my final hours”.

As dramatic as her words sounded, instead of denying her the right to speak her feelings by rushing in and trying to tell her that she was wrong, I once again reassured her that I would be watching over her all night long and then asked her if she’d like me to get her an icy pole to soothe her dry, sore throat.

She agreed to the icy pole immediately and not long after eating it, fell into a deep, sound sleep.

By the time the morning arrived I too had begun to come down with the same dreaded flu.

So we both went off to visit our local doctor who found that my lovely girl had developed an ear infection on top of the flu, which is why she’d felt like her head  was “exploding on the inside”.

As for me, well I’d already been in the throes of fighting  off a sinus infection, as well as catching the flu, so antibiotics and lots of rest were prescribed for both of us.

Later that night I developed a massive migraine as a side effect of the antibiotics.

In response to my migraine misery, not only did my daughter make a point of coming in and checking on me all through the night, but each and every time she came into my room she would ask me:

“What can I do to make you feel  better mum? Can I get you a glass of water? Would you like an icy pole? Do you want me to hold your hand?”

Each time she did this I thanked her for being so kind and thoughtful and each time she would say “It’s okay mum, I know how bad it feels when you’re head’s exploding on the inside.”

The next day, after the migraine had washed away, I once again experienced those same feelings of both extreme love and gratitude for the way my daughter had chosen to love and support me throughout my own night of “final hours”.

When I tried once again to thank her for being so wonderful, she looked at me in confusion and said;

“Mum, why do you keep thanking me? I was only doing  to you what you did for me when I felt like my head was exploding?”

Her words really made me stop and think, not only about the importance of the way I had responded to her when she had been feeling so ill, but the importance of the ways that I respond to her on a daily basis and how all of the small kindnesses that I shower her with are now coming out in her personality, despite the fact that many believe that children like my daughter are incapable of showing  empathy towards others.

You see, my lovely daughter has High Functioning Autism or Asperger’s Syndrome and many mistakenly  think that children and adults with HFA/AS aren’t able to either experience or express empathy for the suffering of others.

Well, I’m here to tell you that my daughter and many like her, can and do experience empathy towards others.

Especially when they grow up being surrounded by both the benefits and the acknowledgement of having empathy shown towards the unique ways in which they experience every aspect of their lives.

So even though sometimes, when you’re busy being a special needs  mum  and you forget just how keenly you’re words and actions impact on the lives of your children, you may just discover that your children will find their own unique ways to remind you of just how important your words and actions are to them.

And hopefully you too will experience this reminder in the nicest of all possible ways.

 

What do you do about disability discrimination when it happens within a family context?

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Step-Mother kicks autistic step son.

During the school holidays, my ex-husband and his new wife took my boys on a “family” holiday to Queensland.

While both of my sons were very excited about the prospect of visiting theme parks like Movie World, Dream World and Wet and Wild, my 17-year-old son, who has Autism, also expressed his fears that he may not be able to cope with the crowds and the noise he knew that he’d have to confront in order to join in the fun.

Instead of focusing on the negatives I tried to encourage my son to view his holiday as a way to practice his social skills in a new and perhaps a more challenging environment.

He took to this idea with great gusto and went into a kind of ‘social skills’ overdrive, taking any and all opportunities that presented themselves to try and talk to workers in every shop we went into.

He told the ladies at the chemists that they had beautiful hair and complimented each and every check out assistant in our supermarket by telling them they were either ‘fast’ or ‘good’ at their jobs.

For each positive comment he gave he received both kind words and supportive smiles in return.

Buoyed by his success, his fears surrounding his ability to cope with the crowds and the noise of the theme parks gradually lessened.

So off he went on his holiday all smiles and happiness.

Then home he came from his holiday,  all  grumpy and with his nerves worn down to the bone.

At first I’d thought that his mood may have been a natural consequence of having been so over stimulated whilst away.

But then I noticed that he’d stopped trying to hold conversations with our local check out assistants like he normally would.

Instead he’d begun reverting back to looking down at the ground and saying nothing when spoken too by the same sales assistants he’d previously taken such delight in communicating with.

After this pattern of behaviour had occurred a few more times I asked him why he didn’t want to talk to anyone.

He put his head down and muttered, “I don’t want to embarrass you.”

“You wouldn’t be embarrassing me. I love it when you chat to people. You know that.” I told him.

Still looking down at his hands, big wet tears began to crawl down on his face.

“What is wrong buddy? Did something happen on holiday to make you feel bad?”

He began nodding his head sadly.

“Do you want to tell me about it?” I asked him.

“No…. it will make you sad or angry and I don’t want you to be angry at me too.”  He replied.

“Why would it make me angry at you?”

“Because it made dad’s wife angry at me.”

“What? Why did she get angry at you?”

“I don’t know but she kicked me and told me to shut up” he said sadly.

Then he added that she’d told him he was an embarrassment to her and to keep his mouth shut when they went out.

So what had my darling son done to make his “step mother” react so horribly toward him?

Well after much patience the story finally tumbled out.

It turned out that she’d taken him into a souvenir shop at Movie World and excited to try out his social skills in a new environment, as we’d discussed, he’d  said to the woman behind the counter;

“Your job looks easy. I think I’d like to have your job”.

Upon which his step mother had kicked him in the back of the leg and told him to shut up.

Once outside of the store she’d ranted at him, telling him that was an embarrassment to her and that he should keep his mouth shut in future because he’d made the lady in the shop feel bad.

To me, the behaviour that my son’s step mother displayed toward him is the only behaviour that anyone should feel embarrassed about.

In one fell swoop she’s taken my sons hard-earned social confidence and tossed it away without a second thought.

Why couldn’t she have politely explained to the lady in the shop that her step son was practicing his social skills?

Would it really have been that hard for her to have shown him some support or to have helped him turn a small social blunder/misunderstanding into a  light-hearted event by saying something as simple as “oh yes I’d love to work here too. It looks like fun.”

As far as I’m concerned, kicking a young man with Autism for trying to practice his social skills in an unfamiliar environment is an entirely inappropriate and bullying response.

Let alone telling him to ‘shut up’ and then calling him an ‘embarrassment to her’.

I’d seriously love to let her know just how I feel about her  bad behaviour, but unlike her, I have the capacity to put my sons needs above and beyond my own desires, so I’ll keep the promise that I made to him to not say anything, as he doesn’t want  to make her  angry at him again.

How do you handle acts of blatant discrimination like this when they’re being carried out by so-called ‘family members’?

 

The Onus of Acceptance – Written by Jean Winegardner

“I recently got an email pitch from a company with a social skills product that claimed the product, “will enable [children with special needs] to be accepted by their peers throughout all aspects of their lives.”

I’m not actually sure what the product was because that sentence stopped me in my tracks.

“Be accepted.” I can’t stop thinking about that. “…will enable them to be accepted by their peers…”

I don’t even remember what the pitch was for because it made me so upset. Why the passive structure on that sentence? Why is the onus on the disabled to be accepted? Why is it our job to make you accept us?

Shouldn’t the real issue here be how to get the typical children to accept special needs kids?

I look at my beautiful, perfect, weirdo autistic son. He is not like his peers. He is also not always accepted. It would probably be easier in the long run for him to learn to “be accepted.”

Yet I look at him and the most damaging thing I can imagine saying to him is, “Maybe you should act like everyone else so kids like you more.”

Yes, I’ve put my son in social skills groups. Yes, I teach him about neurotypical society. Yes, I teach him how to navigate the world as it stands. But no, I do not teach him that he has to change so that the other kids will accept him. I tell him that I love him exactly the way he is. If kids are mean to him, I tell him that the problem is with them—not him.

I am a perfect example of someone who has adjusted her behavior to be accepted. At this point it is almost unconscious. I don’t know that it has been terribly damaging to do that. But it has been exhausting. And it is unfair.

I hear people making the argument all the time that people have to work to be accepted. I hear parents of typical kids, parents of autistic kids, and neuro-typical and neuro-diverse people alike say that you have to change yourself to fit in. To a degree, they are right. Most people work to get along with other people. We dress a certain way in business environments. We tend to alter our behavior based on the situation in which we find ourselves.

But these ways of fitting in and the fact that everyone does them doesn’t change the fact that society asks autistic kids and adults to change most of their behaviors and to deny their natural instincts for the purpose of becoming more palatable to the neuro-majority. Society isn’t asking autistic people to make the same adjustments as everyone else. Society is asking autistic people to suppress who they are almost all of the time.

Asking someone to change who they are to be accepted isn’t okay. It’s like asking a woman to learn not to be raped. It’s like asking a child to learn not to be abused. It’s like asking a victim to learn not to be bullied. I know those analogies aren’t exactly right, but that is what it feels like. If you want something to happen, you have to teach the actor—not the recipient.

I am happy that I hear more and more parents defending their kids’ rights to be who they are, society be damned, but I know that I also hear a lot of parents telling their kids that it is their job to fit in. I wonder if all parents—of both typical and autistic kids—stopped trying to help their kids fit in and just told them to be who they are—consequences be damned—if maybe those consequences would disappear.

Maybe the time has come to stop teaching our autistic kids to mold themselves into what society wants them to be. Maybe the answer isn’t to change autistic people until we are palatable to the world at large. Maybe we don’t need to keep working to “be accepted.”

Maybe the answer is to put the onus on everyone else to accept us.”

 Article sourced directly from http://autismwomensnetwork.org/node/1634

 

Do Half Siblings Have Any Rights? Why my daughter can’t stop obsessing over the sister she never sees.

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After my ex-husband and I separated he began dating other women.

As is his absolute right to do so.

After 6 months or so he found a lovely woman whom he settled down with.

Everything was going great and my daughter adored her.

A few months into their relationship my ex’s new partner became pregnant and they moved in together.

Once again, absolutely nothing wrong with that.

My daughter became naturally excited about the pregnancy and the thought of having a new sibling to play with.

Her excitement was encouraged by both my ex and his partner and the new baby was literally all she could talk about.

However, less than 6 months after the new baby girl was born, my ex and his partner broke up and she naturally moved out of the house with her baby.

My daughter was devastated by it all but still had contact with her baby sister every second weekend during visitation.

These visits however became fewer and father between.

Eventually my ex-husband decided to stop seeing his new baby girl all together as he said that “it was easier for him to move on without the reminder of another failed relationship.”

However his decision to cut all ties to his new daughter, also meant that my daughter lost all ability to see her sister.

This happened over  5 years ago and during that time my daughter has become increasingly obsessed with finding and gaining access to her sister.

And when I say obsessed, I really do mean obsessed as in utterly fixated.

She has asked her father numerous times to resume contact with his other daughter but each and every time she does so, her father simply says,  “No. I’m not going to do that.”

Now my daughter has Asperger’s Syndrome, so to her, being told a simple NO without an accompanying explanation, to such a complex situation, is pretty much a sin.

In short, my daughter simply cannot accept that she may never see her sister again.

She talks about her every day.

She’s even tried to find her father’s ex-partner on Facebook and spends hours upon hours messaging  random people to ask them if they know where her sister is living.

It’s to the point now where she’s even changed her Facebook name so that her sister’s name appears on her Facebook page as her own middle name.

Despite all of this, her father still continues to refuse to make contact with either his ex partner or his other daughter.

As for me, well I feel like I’m in a catch 22 situation.

I mean really, whatever went on between my ex-husband and his ex-partner has nothing what so ever to do with me and I have absolutely no desire to know the in’s and outs’ of it all.

But at the same time, I don’t know how I’m supposed to sit quietly by, while my daughter tares herself apart over a sister she’s been prevented from having anything to do with, all because two grown adults refuse to recognize the harm they’re ignorance is causing her.

Help….. What should I do?

Anything?

Nothing?

Stay out of it all and keep my mouth shut?

Do half siblings even have any rights in regards to being able to see each other?

Has your child’s use of digital/social media changed the way you parent them?

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There’s been a lot of talk during the past few years over the way  in which digital media has changed the way our children interact with each other and the world around them, but just how, I wonder, has it changed the way we parent them?

Are we becoming media savvy parents?

You know the kind of parents who are friends with all of their children on Facebook and as a result spend half their nights keeping track of who’s who in their children’s lives on-line, only to find themselves increasingly losing the everyday, face to face, talking with real words, communication battle?

If so, just what kind of messages are we sending to our children if one of our main modes of communicating with them is now being delivered via social media sites like Facebook ?

Are we proving that we are cool, up with it all parents, or are we simply guilty of giving in to the pressure to communicate with our children by any means possible?

Even if doing so, in the end, puts us at risk of becoming the kind of parents who are slowly  being conditioned to change our ways rather than encouraging our children to adapt to our preferred method of communication.

And if, as parents, we don’t adapt to things like Facebook, could we be considered less socially able to understand the contexts in which our children are fleshing out their daily lives?

What do you think?

Has your child’s use of digital/social media forced you to change the way you parent your child?

 

Mum… don’t leave your Facebook logged in on my Ipad……

My lovely daughter took over my Facebook for a brief period of time today.
If  any of you received any comments that you felt may perhaps  have been a tad bit unusual from me….
Especially those followed by an XOXO……..
Please know that my daughter enjoyed your posts immensely ……
And of course…..
She left me a message of her very own just to remind me never to be so absent-minded again as to leave my Facebook logged in and unattended.
Below is the message she left me.

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This is what I said to my doctors at the asylum ;) xo

P.S I got out 8 weeks ago today :).
Mum don’t leave your Facebook logged in on my iPad…

Oh and just in case any of you are wondering…..
I have not just escaped from the asylum……
And yes….
My girl does indeed have a wicked sense of humor….

 

 

It’s not up to Siri to decide, it’s up to the Motherboard. Mother’s you simply can’t escape them.

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My eldest son  got an I-Pad today.

Well that ‘s a big YAY all in itself !

 

He’s been wanting one for ages and I’ve yet to join an Autism Parent support group where at least a half a dozen or more parents haven’t raved about how well their son/daughter has been doing with their lovely new little digital genies.

So we brought this miraculous object home and my middle son began setting it up for my eldest son to use.

 

He’d programmed his brother’s name into Siri‘s settings,  unbeknownst to my eldest son.
So the first time my son said hello to Siri, she said hello back to him…. USING HIS NAME!!!!

 

 

Image representing Siri as depicted in CrunchBase

 

Well his face lit up and he thought it was magic.

 

Perhaps those parents at the Autism  support groups hadn’t been on drugs after all when they’d spoken with such passion about  how Siri  has worked wonders for their children.

 

Anyway…. fast forward a couple of hours and after asking Siri an endless string of illogical questions just to:

A) Hear her digitized female voice say his name over and over again.

B) Giggle at her pronouncement of “Sorry I do not understand”. A phrase which he hears regularly in real life and so is extremely familiar with.

 

C) Find out where the best place to hide a dead body would be in any given location….. Okay…. Okay…. now you can blame my middle son for that one.

 

He started it…

 

Oh and just in case you are wondering Siri recommends swamps as the best locations for the disposal of dead bodies in just about every known location.

 

English: The logo for Apple Computer, now Appl...

 

I wonder if the good folks at Apple have anything to hide? If so, I suggest checking all swamps first and foremost.

 

Anyway given Siri’s affinity for swamps, my son soon grew tired of this game.

 

So he then asked her….. (well her female digitized voice)….. if she would marry him…..

 

To which Siri replied….

 

“It’s nice of you to ask….. but it’s not for me to decide”……..

 

Her response was followed by an instant look of rejection.

 

“Don’t worry, “my middle son told his older brother immediately… “It’s not up to Siri decide, it’s up to the Motherboard.”

 

He then looked at me and with a big smile on his face  and said ……

 

“See it’s always up to the mother unit, even in the digital realm….. you simply can’t escape them”.

 

 

 

So why all the animals ?????? This post is in honor of my middle son…… I really do see you my lovely young one.

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I rarely write about my middle child.

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My youngest son who  so willingly engages,67935_541838245867555_1087220439_n Within in his own silent and peaceful universe.

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The universe he’s created to escape the lack of attention he receives  from me when ever I’m busy dealing with either the needs of my eldest son or the melt downs of my youngest daughter.

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I know sometimes he thinks that I forget to see to him.

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That I forget to listen to, or hear him.

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Or that I forget to think of him and his needs amidst the daily jungle of our lives.

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I’d like to say that he’s perspectives are neither accurate nor true,

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But,

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I know that sometimes he’s right.

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So in order to show him that I do see him,

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That I do listen to him and think about him,

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His interests and his needs,

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I’ll often search the internet for amazing wildlife photos of the animals  I know he loves and adores.

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He is a child of nature.

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And he loves all creatures big and small.

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This is his way of coping.

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And I love taking the time to  see, appreciate and understand the sense of wonder that still exists within his precious soul.

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So this post is for you my lovely young lion.521850_543994382318608_1741177800_n

And this is your mother’s way of saying she’s watching over and loving  you just as much too <3