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Navigating through myriad outward expressions of a person, community or program can be exhausting and daunting in the quest to respond, interact and relate appropriately; or according to our values and beliefs; or in a healthy way; or in the best interests of the other.

Parenting, of course, provides so much ‘opportunity’ to navigate and respond!

When our children were young we were regularly asked if we wanted to use melatonin to assist with their sleeping, as many parents of children who are blind are – or wish they had been. We declined as two of our children were good sleepers (relatively speaking) and we determined that the other child’s continued sleep issues were more person-specific. As a teen one child required meds during ‘tween’ years for seizures, on top of  being one who needs sleep, and the normal vague, weary, distance of being a teenager. Life is affected by all these, how to navigate through all experiences and choose a response is a mammoth ask.

Hindsight indicates to me that the need for routine and life management was, thankfully, the best response to attitude, sleeplessness and character development for one child. Unfortunately, a more boundary-setting and less leave-it-to-your-own-consequences response to the teen years of another would have been a more productive response.

Each family is different from another. Each individual within that family is different from another. The culture and background of each of us is going to be different one from another in every community or program we are a part of. Enjoy the journey of learning, and seeking, and responding. I have learned much about the body, the mind, the emotions, cultures, seasons of life, ideas I would never have come up with on my own from inviting input from others. I have not necessarily embraced or agreed with all I have learned, but some I certainly have, and all I have grown from. Consider as many option as you can, or are able to consider at any one time in your life – and then choose. It’ll be ok, even when hindsight shows you the choice wasn’t the best one or it was even the wrong one. Start again, as Anne Shirley (of Green Gables) said, “Tomorrow is fresh, with no mistakes in it.”

I fear choosing wrong, but I like to learn and be the other side of a growth opportunity more. So, I choose to learn and grow. Will you learn and grow with me?

 

From Stuart McDonald

I dedicate these sentiments I wrote (see below) to the people I know who find that they, too, may be beset by doubts, fears and anxieties beyond number, and who find themselves in a place of darkness, shadow and a woefully uncertain future. We live in our present because it is the only now we have.
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Don’t Think That of Me (Stuart McDonald)

You cannot for a moment think of me as this person,
This man,
This wretch or this weakened idiot and fool you think me to be.
For in me, inside of me, as a man of this earth, as torn as the next and as sunken beneath the weight of my own heart as the next,
I am something else.
I am the thing you fear the most,
The faithful one
The determined and recklessly hopeful one.
Yes, quite possibly the most to be feared am I –
He who hopes even when he has none left to himself.
Emptied.
All self gone, all hope gone,
Empty.
Hollowed.
Hardly an echo of hope remains.
Hollow.
And yet I choose to still have something,
Something,
Some foreign and familiar thing
Drifting, floating and sinking within me.
Most to be feared am I.
This shell,
And this husk,
And this body burnt to a crisp.
For you would have me believe that
My fragile shell
Hollowed like a tree trunk carven an eternity ago
Struck down by lightening’s gleeful potency,
Is impotent.
And yet.
And yet, I hope.
My tears stream down my face and I hope.
In spite of my sunken soul and
This withered hand that reaches for someone else’s strength,
And wrapped in the cold blankets of the longest of winters,
I somehow choose some kind of hope.
It is not the kind I am use to.
Not me, my richest of dreams scattered in the winds like ticker tape in days gone by.
No, not like that.
And you think you can crush me?
Perhaps you can.
And perhaps even until the very last minute
I can look outside, beyond the claws
Beyond the mighty pressing weight you claim to possess
And which I certainly feel,
And perhaps even then … When all is fire and heat, and ice and stone all at once,
Even then,
I can gaze beyond this here
Beyond this now.
Even the hopeless can hope.
And I am that man.

The Crocodile Farm

There once was a crocodile farm that had two swamps for the crocodiles to enjoy; one great big one, and one teeny tiny one (that a frog barely fit into).

The crocodile farmer had two beautiful crocodiles who loved to lay in the sun beside the great big swamp to get warm. When they got too warm the two beautiful crocodiles would slide down the bank and into the cool murky water to cool off.

The two beautiful crocodiles loved their great big swamp; they loved sharing it together; they loved it when visitors to the crocodile farm came to look at them from over the fence.

One morning a truck drove up to the gate in the fence, which kept the crocodiles in and the people out. The two beautiful crocodiles, lying in the sun, didn’t move, but kept watch to see what would happen.

The gate opened…and two more crocodiles were taken out of the truck and left inside the fence, with the farmer’s two beautiful crocodiles. One of the new crocodiles was very similar to the two beautiful crocodiles, almost the same size even. The other of the two new crocodiles was HUGE! ENORMOUS! Very Impressive!

The two beautiful crocodiles thought it would be great to have the HUGE! ENORMOUS! Very Impressive! crocodile in their great big swamp with them. They thought that visitors to the farm would love looking at them even more with this HUGE! ENORMOUS! Very Impressive! crocodile sharing their swamp.

But the first-of-the-new-crocodiles was a bit skinny. The two beautiful crocodiles thought he didn’t look strong at all and also thought it was best if this one shared the teeny tiny swamp with the frog.

The HUGE! ENORMOUS! Very Impressive! crocodile enjoyed sunning himself on the bank of the great big swamp and sliding into the water when he got too warm. The two beautiful crocodiles were very glad he was in their swam, surely the visitors to the farm would love seeing two beautiful crocodiles and on HUGE! ENORMOUS! Very Impressive! crocodile all together.

The first-of-the-new-crocodiles enjoyed being with the frog. They became great friends. But this crocodile couldn’t enjoy the teeny tiny swamp. There wasn’t even enough room or water for the frog and definitely not enough room or water for the crocodile. Some times the first-of-the-new-crocodiles became so hot that he got sick because he couldn’t slide into the murky water of the swamp to cool off. But the frog would sit beside him and they would share stories together about all the swamps and farms they had lived on and about their families. They were very great friends.

One day the crocodile farmer brought some visitors to look over the fence at his crocodiles. The visitors watched the two beautiful crocodiles and the HUGE! ENORMOUS! Very Impressive! crocodile sunning themselves on the bank and sliding into the murky water. These three crocodiles heard them saying how much they liked being able to see them there.

Not many visitors looked over the fence at the first-of-the-new-crocodiles and the frog. But they were happy being friends and the first-of-the-new-crocodiles began to sing while the frog jumped a dance to his song.

When the visitors to the farm heard the first-of-the-new-crocodiles sing they moved to his end of the fence to listen. They loved hearing the song and watching the frog dance.

After the farmer and the visitors left, the two beautiful crocodiles had a think.

They thought that the visitors liked seeing that they were beautiful; and seeing the HUGE! ENORMOUS! Very Impressive! crocodile; and enjoyed hearing the first-of-the-new-crocodiles’ song; and were amused watching the frog dance.

So, the crocodiles and the frog all decided that they would share the great big swamp because they each were special – beautiful, HUGE!, musical and funny.

They all became friends and they all had visitors come to see and hear them at the crocodile farm. Which made the farmer very pleased.

 

6/7/2014

Gina Marie

 

 

Wisdom, Maturity, Growth

I was once asked what made me grow. My instant response was, trauma and pain.

James in the Bible says testing grows endurance, and when endurance is done we are complete.

Chuck Swindoll says:

By accepting life’s tests and temptations as friends, we become men and women of mature character. There is no shortcut, no such thing as instant endurance. The pain brought on by interruptions and disappointments, by loss and failure, by accidents and disease, is the long and arduous road to maturity. There is no other road…Periodically, however, we will find ourselves at a loss to know what to do or how to respond. It’s then we ask for help…When we have responded as we should to life’s blows, enduring them rather than escaping them, we are given more maturity that stays with us and new measures of wisdom which we are able to draw upon for the balance of our lives.

Endurance doesn’t necessarily mean doing nothing though. But persisting until the trial is through or settled. Maturity and wisdom for the balance of my life. That’s what I want: maturity, wisdom, balance! I guess I will count the trials of life a joy (not enjoy the trials though), ask for help to learn how to manage, work through and sometimes even change them because in the end I will be able to become mature, wise and BALANCED.

Do you want that too? Balance?

Adversity, What’s yours?

My middle and third children have a friend who has included a quote with her photo online. The quote is by Neil Marcus…

Disability is not a brave struggle or courage in the face of adversity. Disability is an art.

Now, I’ve not yet met a person who has a ‘disability’ and loves to be told that they’re amazing or brave or special or beautiful or clever or…because they can’t do some of the things someone else can. I am a parent who doesn’t really get much of a boost from being told I’m great at it just because I happen to have children who can’t see, especially by strangers. Having said that, if a person who has lived with me in some form of close relationship and/or observed my parenting as it occurs, and then says that it’s great, I may be a little chuffed. My children, likewise, will be encouraged by acknowledgement of their work and achievements; but if all the speaker knows of them is that they exist but can’t see…not much to be enraptured with there.

My children don’t see being blind as an adversity. I don’t see having children who are blind as being an adversity. In my case of course, it was not what I had imagined or knew much about, but my children have never known any different. So, what is adversity? My dictionary search suggests that the origins of the word (from French and Latin) meant to turn towards, be opposite (adverse) and the like. Being a person who can’t see or having children who can’t see isn’t adverse to us, opposing us, turning towards us; it is how we are, how it is, the direction we are travelling already.

So, what is our/my adversity?

I remember some years ago talking to a friend who gets around in a wheelchair. I was discussing with her the fact that the hazard and directional tiles that are installed to encourage independent travel (and possibly more safe travel) for those who are blind are often not placed correctly as those installing them don’t realise there is a particular way they are used, and don’t seek to be informed. During the course of the conversation though, she mentioned that they are often a risk to her as she can be thrown from her chair as she travels over them (like corrugation on a gravel road, I imagine!). I was sharing my new learning about her sometime-experience-in-life when child number one mentioned that the phone boxes installed to encourage independent use of a public phone for chair users can be a hazard for those who use a cane, as they don’t reach the ground where the tip is (bump of head, shoulder, face). What do I see in these things? Environmental and societal adversity or disability.

Similar adversity occurs in the school ground, within the education ‘system’ (teaching method, delivery, reception and learning difference, work production, submission method etc.); in the health and medical environment; in the myriad sporting genres. I guess I needn’t go on.

In all honesty, my adversity is those who see me as their adversity! And I am the adversity that someone else faces.

Realising who we are averse to and who is averse to us, or realising what is adverse to us or another is not enough though. If, in adversity, we (person, family, culture, environment, system…) only recognise that we are in a ‘face-off’, we may do battle; we may control/conform; we may add programs, equipment, beliefs etc. to others, compounding responsibility and requirements. Alternatively, if after recognising that we’re facing adversity we communicate our desires and needs and goals and experience and expertise each with the other, perhaps we can unlock a new pathway we walk together, facing the same direction. Not turned toward each other in opposition, but together turned toward a common goal, destination; an agreed path; by a new or negotiated and amalgamated system.

I think that I’m not opposed to adversity, mine or yours (but I don’t like it!). I am opposed to remaining averse to each other on all things. If we must walk or desire to walk together, we will most likely need a new mode of walking and possibly a new route or even goal to walk along and towards. Continuing along our familiar but separate paths, in our familiar but separate ways, attempting to impose these ways and paths onto those we are averse to will exacerbate not relieve adversity.

We each have adversities in life. Perhaps the question is not what they are so much as what will I do when they are revealed. Am I a heel-digger or a malleable, teachable listener and adapter and path-turner? Independently individualistic or a community-minded team player.

Permanent and persistent adversity may not live well in community, but it can be a trigger for turning towards it.

 

The Seed

A seed was planted in good soil, unseen by anyone, in a personal act of love by one who desired to watch it grow and flourish and become what it was designed and planted to be.

The seed began to shoot and sprout up through the soil that had been prepared by the sower.

The sower then employed a variety of people to feed and nurture and protect and make space for the seed. The seed, once dead, now alive with fresh green growth, full of vibrancy and enthusiasm to become and produce all it was designed and destined to be.

 

The bank manager knew that growth comes from financial investment. So he surrounded and covered the small green shoots with money. But the sun could not break through to give the shoots the vital nourishment they required to continue to grow.

The librarian knew that growth comes from reading and gaining new information. She loved books of good quality so she surrounded and covered the small green shoots and the money with fine leather-bound books full of knowledge But the rain could not penetrate the beautiful leather to moisten the good soil and nourish the seed with its roots beneath the surface, which was necessary for its growth.

The vermin controller knew that growth comes when protected from predators. So he covered the small green shoots and the money and the books with wire and a baited wooden trap to keep at bay and catch any that would come to devour the shoots or dig up the seed before it could grow to maturity. But the shoots were smothered and had no space to feed and grow.

The agronomist knew that growth comes with the absence of weeds. So she sprayed over the small green shoots and the money and the books and the wire and wooden traps. But the good soil became poisoned and made the roots and shoots sick.

 

And beneath all the good intentions, the new plant began to wither.

 

The sower was watching the seed he planted and those he employed to feed and nurture and protect and make space for the seed to grow…

…and his heart was breaking.

The sower had prepared the soil, the space, and the nourishment for the seed to grow to maturity as it was designed to, but chose to share the joy and fulfillment of contributing to its growth with others.

 

The sower called together the bank manager, the librarian, the vermin controller and the agronomist to discuss the withering of the plant.

To the bank manager, the sower explained the need for sunlight to reach the shoots to nourish them. Though he meant well, the new plant was malnourished.

To the librarian, the sower explained that the beautiful books prevented the rain from moistening the soil. Though she meant well, the new plant was dying of thirst.

To the vermin controller, the sower explained that the protective measures were smothering the plant. Though he meant well, the new plant was suffocating.

To the agronomist, the sower explained that poisoning the weeds in turn poisoned the soil in which the seed was planted. Though she meant well, the new plant was sick with poison.

 

“I chose each of you for the good you might contribute to the growth of this seed I have planted. But you have each been working independently instead of interdependently. The librarian can contribute to an informed approach to vermin and weed control, plant and soil nourishment. The bank manager can contribute to financial provision and management for this education and the necessary resources. The vermin controller and agronomist can use their new education and resources to promote the plant’s growth instead of its demise.”

 

As each one stepped back and observed the tender plant, they were able to recognize what its needs might be. In turn they also enquired each of the other to learn from observations they may not have recognized, or had prior knowledge of to have even been considered.

Most importantly…

…as a team in constant communication , those employed for service to the growth of the new plant – in fact to service of the plant itself – began to listen for and hear what the little plant was telling them. They heard and could see when the plant needed moisture, or sunlight or protection or space; because they were attending to the needs of the seed instead of what they wanted to give or to do.

 

The little plant grew tall and strong and was borne of new seed so that more plants could grow, providing clean air and beauty to enjoy.

 

The workers and the sower lived with much joy and with a profound and unfathomable sense of accomplishment as they witnessed the growth, and maturity, and provision, and beauty of the little seed, which became great.

 

Gina Schmidt 26/6/2014

The Logical Fallacy of Person First Language

iamginamarie:

Autistic people, however, have repeatedly expressed a preference for identity first language. For some reason, nonautistic people who think they know better continue to ignore our (loudly and oft-stated) preference. To those people I say, “If you truly believe we’re people, first or otherwise, then listen to what we’re saying and respect our preference.”

Autistic is not a dirty word. When you act like it is, you aren’t helping autistic people. You’re contributing the very stigma that you pretend to abhor.

Or blind, or…, or single, or married…or male, or female, or ???

Originally posted on Musings of an Aspie:

The problems with person first language have been talked about extensively in the autistic community. Many autistic people have expressed a strong, explicit preference for identity first language. And yet, we’re still treated to comments like this one (paraphrased from a comment on another blog):

I work with children with autism and I always say child with autism because they’re children first and autism doesn’t define them. Also, I say typically developing child instead of normal, because normal has negative connotations. Words are important–they reflect how you think.

My first reaction to reading that type of comment is always, “aren’t the typically developing children also children first?”

Or do we just not need to be reminded that they’re children?

If you don’t use normal because it has negative connotations, does the same logic apply to the use of autistic? Or does autistic exist in some special category of word…

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