The lost soul inside.

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I am,

An open book,

With pages,

Missing.

 

I am,

An old film,

With frames cut,

Out.

 

I am,

An imposable puzzle,

With secrets,

Written on the back,

Of every piece.

 

I am like a memory,

Shattered into so many,

Small pieces,

That no one can ever,

Seem to remember me,

Whole.

 

I am,

An old pocket watch,

Lost in the sands,

Of time.

 

I am a little box,

With feelings locked inside,

But you can’t open me,

Because,

I have no key.

 

I am the kid,

That everyone see’s,

Yet still somehow,

Never seems to notice.

 

I am the child,

That speaks,

Yet no one ever hears,

The words I cry. 

 

I am the flame,

That will soon,

Go out.

 

But for you,

I will use,

The last,

Of my fire,

To keep,

You safe.   

This poem was written by my middle son just a few days ago. I know it has been tough on him growing up as the middle child, anchored as he is,  on either side, by siblings on the Autism Spectrum.

His words say it all and I am so very proud of his  extraordinarily sensitive and caring soul.

“Those of us who are too gentle to live among the wolves”

Artwork by Jennifer Healey

“I am one of the searchers.

There are,

 I believe,

Millions,

Of us.

We are not unhappy,

But neither are we really content.

We continue to explore life,

Hoping to uncover its ultimate secret.

We continue to explore ourselves,

Hoping to understand.

We like to walk along the beach,

We are drawn by the ocean,

Taken by its power,

Its unceasing motion,

Its mystery and unspeakable beauty.

We like forests and mountains,

Deserts and hidden rivers,

And the lonely cities as well.

Our sadness is as much a part of our lives,

As is our laughter.

To share our sadness with one we love,

Is perhaps as great a joy,

As we can know,

Unless it be to share,

Our laughter.

We searchers are ambitious,

Only for life itself,

For everything beautiful it can provide.

Most of all we love and want to be loved.

We want to live in a relationship,

That will not impede our wandering,

Nor prevent our search,

Nor lock us in prison walls;

That will take us for what little we have to give.

We do not want to prove ourselves to another,

Or compete for love.

For wanderers, dreamers, and lovers,

For lonely men and women who dare to ask of life,

Everything good and beautiful.

Are those of us,

Who are too gentle,

To live among,

The wolves.”

Words by  James Kavanaugh

Artwork by Naotahattroi.com

 

“Never let them tell you that silence isn’t beautiful”

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“I read her eyes like paragraphs

And her tears like chapters,

For she didn’t have much to say,

With words,

But rather,

Silence.

And never let them tell you,

That silence,

Isn’t beautiful.

For silence is what happens,

When words fall asleep

And you must carry,

The belief,

That one day,

They will,

Wake up,

Inside of you.”

Words by Christopher Poindexter.

Artwork by Daniela Hallgren.

 

“My body is full of stars that never learned their names”.

Artwork by Carne Griffit

Artwork by Carne Griffit

“I am filled with things and I battle feelings,

I have never wanted to exist inside of me.

I lack too much confidence and I carry,

Too much sadness,

And my body is full of stars,

That never learned their names.

I wear my insecurities,

Like pockets,

And I fill them,

With my fears,

And my hands are growing tired,

From reaching down into them to hold,

The feeling of being afraid.

I am afraid.

Always,

Afraid.

Afraid like chimes,

When the wind lips,

Are sealed.

Afraid like your eyes,

When the stars,

Fall asleep in the black.

Afraid like dreams,

When they realize they are just dreams,

And that reality,

Is that one scar that will never,

Fade away.

I am,

Terrified.

Terrified that the things inside me,

Are the things that will keep me,

From ever finding a home,

Inside someone else.”

Words by Christopher Poindexter. Artwork by Carne Griffit.

Could starting up and running a Facebook Page be for you? Some of the benefits and pitfalls that you may need to be aware of.

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A few weeks ago I started a Facebook page and I must say that the entire process of doing so was an incredibly easy one.

At every stage along the way there where prompts reminding me of what needed to be done and even suggestions as to how to do them more easily.

Yet, whilst the mechanics of if have been remarkably easy, by far and away, the hardest part of starting up a Facebook page has been finding the right ways to express what it is exactly,  you want  your  page to achieve.

In my case, I wanted to create a page that focused on the female experience of living with Asperger’s Syndrome / High Functioning Autism.

Which in itself sounds fairly straight forward but in actual fact  has proven to be far more difficult than I had at first thought.

So simply having an idea, whether it be specific or not,  as to what you’d like your page to be about, still leaves you only half way there and this is because,  even though you may have a clear concept of what it is you’d like to discuss, share or achieve on your page, others may have very different ideas as to how they perceive or wish to interact with your page.

For instance, even though my page is dedicated to primarily expressing and exploring the experiences of women with Asperger’s, it has been joined by several people who are  either the parents of daughters with Asperger’s Syndrome or the partners of someone with Asperger’s Syndrome.

This is fine by me and for the most part I applaud parents for being open enough to listen too and learn from,  where relevant, the experiences of women who have been in their children’s shoes, but, there are times when either I myself, or someone else, will share a post or a comment, that whilst not designed to hurt the feelings of non-Asperger’s women or parents, never the less, becomes perceived as doing so.

In such cases, the negative comments made by those who feel slighted, often effectively shuts down  any and all further discussion surrounding whatever the topic of the post may have been.

This remains an issue that I am unsure how to confront, as even those people who run Facebook pages that have taken the time to make it very clear that they are designed first and foremost for a specific purpose, still find themselves  in the predicament of having to try and clear up other people’s misconceptions of their comments or posts.

It seems that no matter what you do you can never please everyone, yet I’m  still far from convinced that this fact alone means that one should settle for the potential of offending everyone either.

fblikeAnother issue that has  become somewhat of a quandary to me is the way in which “likes” for particular posts are being both attributed and distributed by Facebook.

For instance, running a much smaller page on Facebook I’ve found that often the bigger pages will pick up on one of my posts and “share” it on their own pages.

Now I don’t mind this happening at all, after all the aim is to spread awareness, and when it first began happening I thought it was a good thing as it was providing my page with exposure.

However this turns out to be less the case because in the process  of the bigger pages doing so, the “likes” for whatever post they’ve chosen to “share”  end up becoming  attributed to their page’s alone.

This means that although it’s may be my post, from my page, that people may be “liking”, the  fact that it is being distributed on a larger page means that those “likes” never make it back to or become attributed to, my page.

Normally this wouldn’t be so much of a problem, however, the way  in which Facebook chooses to promote  ‘not for profit pages’ makes it so, as the capacity of any such page to reach new members , depends entirely upon the amount of “likes” it receives.

The more “likes” a page receives, the bigger the page becomes and the size of the page decides how high up on the list of recommended pages, it will appear on Facebook.

The higher up the list a page appears, the more likely it is that it will continue to attract new members and therefore grow.

So, under this system, if  bigger pages continue to be the sole beneficiaries  of the  “likes” they receive  for “sharing” smaller pages posts, then effectively the  bigger pages will continue to boom and the smaller pages will continue to remain just that, small.

This to me sets up a kind of dog eat dog system of promotion, which is something to bear in mind and be prepared for, if you are thinking of starting up a Facebook Page.

So although Facebook makes it incredibly easy to start your own Facebook Page, these are  just  some of the issues associated with starting up and running a Facebook page that you need to be aware of.

In the end, whether or not you choose to start-up a Facebook page, may well all come down to a matter of deciding what it is you want to achieve and whether or not that goal can best be achieved via Facebook.

 

“The steady accumulation of a thousand slights”…….. Nelson Mandela

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“I had no epiphany, no singular revelation, no moment of truth, but a steady accumulation of a thousand slights, a thousand indignities and a thousand unremembered moments produced in me an anger, a rebelliousness, a desire to fight the system that imprisoned my people. There was no particular day on which I said, Henceforth I will devote myself to the liberation of my people; instead, I simply found myself doing so, and could not do otherwise.”
Nelson Mandela, Long Walk to Freedom 

 

23 Things you can take for granted if you happen to be Neuro -Typical with Neuro-Typical children

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1. You can, if you wish, arrange to be in the company of people who share your own “neuro-typical status” most of the time.

 

2. If  you should need to move, you can be pretty sure of renting or purchasing housing in an area, that you can afford and in which you would want to live.

 

3. You can be pretty sure that your neighbors in such a location will be neutral or pleasant toward you.

 

4. You can go shopping alone most of the time,  and be pretty well assured that you will not be followed or harassed.

 

5. You can turn on the television or open to the front page of the paper and see people of your own “neuro- typical status” widely represented (in positive ways).

 

6. When you were told about your national heritage or about “civilization,” you were shown that people of your ilk made it what it is.

 

7. You can be sure that your children will be given curricular materials that testify to the existence of their “neuro-typical validity”.

 

8. You can arrange to protect your children most of the time from people who might not like them.

 

9. Whether you use checks, credit cards or cash, you can count on your “neuro-typical behaviour” not to work against the appearance of your financial reliability.

 

10. You can go into a supermarket or into a hairdresser’s without risking “being over whelmed by sensory stimulation”.

 

11. You can swear, or dress in second-hand clothes, or not answer letters, without having people attribute these choices to bad morals, or the inadequacies of  “having a non-neuro- typical status”.

 

12. You can speak in public to a powerful group without putting your “neurological status” on trial.

 

13. You can do well in a challenging situation without being called a credit to your “neuro-typical” class.

 

14. You will never be asked to speak on behalf of all the people in your “neuro- typical” group, everywhere.

 

15. You can remain oblivious of the “sensory needs and issues of non-neuro-typical persons” without feeling any cultural penalty for doing so.

 

16. You can criticize your government and talk about how much you fear its policies and behavior without being seen as an outsider.

 

17. You can be pretty sure that if you ask to talk to “the person in charge,” you will be facing a person of your own “neuro-typical status”

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18. You can easily buy posters, post-cards, picture books, greeting cards, dolls, toys, and children’s magazines featuring people of your own “neuro-typical status”.

 

19. You can go home from most meetings of organizations you belong to feeling somewhat tied in, rather than isolated, out-of-place, outnumbered, unheard, held at a distance, or feared.

 

20. You can take a job with an affirmative action employer without having co-workers on the job suspect that you got it because of your “neurological status”.

 

21. You can choose public accommodation without fearing that people of your “neurological status” will be mistreated in the place you have chosen.

 

22. You can be sure that if you need legal or medical help your “neurological status” will not work against you.

 

23. If your day, week or year is going badly, you need not ask of each negative episode or situation you’ve encountered, whether it holds “discriminatory” overtones.

Artwork by Sam Drawing

Artwork by Sam Drawing

These are just a few examples of the common everyday things that those of us  who experience Autism, Developmental delays, Brain Injuries, Chromosomal additions or deletions, or who are neurologically different, in any way,  can never  take for granted in our daily lives.

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So the next time you see someone struggling to do that which for you has now become so easy that  it’s taken for granted, take a few seconds before you cast judgement and ask what you can do to help, rather than  hinder, that person’s situation.

Art by Maria Zeldis

Art by Maria Zeldis

A little bit of kindness goes a long, long way but a little bit of understanding goes even further.

Art work by Kate Hannah

Art work by Kate Hannah

List originally compiled using the resources of the classic article “White Privilege: Unpacking the Invisible Knapsack” By Peggy McIntosh, and adapted by me to include and consider the ramifications of the taken for granted actions of those who do not experience any degree of neurological difference.