Family

The Tunnel – A Parent’s Journey

The Tunnel

 

Entering a tunnel

Darkness closes in

And roads, once open for to travel,

Are behind, now growing dim

 

Tunnels within the tunnel

Are hidden, not in view

Another holds a lantern

Describes the roads I now can choose

 

Confusion reigns in darkness

Who is safe to trust

Suspicion fills the spaces, which

No longer are robust

 

A strange and lonely journey

Travelled without choice

The One who’s been my leader

I can yet hear His voice

 

Trusted Him in struggle

Trusted Him in peace

As promised He’s been present

Promise stands;

He’s present, He will lead

 

30/3/2018

The Story of Me – Begin…

I could start at the beginning. I could pretend I know my ending, and work backwards. I could give you the bleached version, the raw version…

Welcome to the as-it-comes ‘story of me’, and I’ll begin where I am.

I am at graduation. Graduating from seventeen years, three children, and parenting through school (including my own first academic qualification).

Would I do things differently? Well, that would be to pretend I could be different to who I have been at any given moment. So, if I had my time over (pretending again), I’m guessing it would be exactly the same. Are there things I regret – conversations, actions, reactions, beliefs, values? Of course! Which shows I’ve grown; reflected; learned; processed; become more wholly myself. Not arrived, but arriving.

 

One of the most painful paths of my journey has been going through the school years as a parent (and I didn’t much like most of my own school years). A parent with children who experience the world outside of the mainstream.

There was some seasonal epilepsy, which was met with compassion. We brought with us allergy and eczema, which was largely dismissed, or used to shame and control. Blindness and emotion, though, were largely to be feared, seen as a threat, and handled by protecting ignorance, the status quo. Essentially, self-preservation of staff and systems (even outdated/non-recommended systems) – at the expense of…my children. Not just their academic education, I had been learning how I would facilitate that since before they were born anyway. But their sense of self, individuality, place in the world, contribution to the world, belonging in the world, was undermined at almost every opportunity.

 

To those of you who embraced my children (though few in number), drawing them into community and thereby being changed and changing yourself as a result of being in each other’s worlds, thank you.

Thank you for learning to do and say and model differently to your preferences, so that my children could learn in the ways they needed to. Thank you for engaging with their ways and their person – especially those of you who saw each of my children as their individual selves. Not as one, identical. Thank you to the ones who naturally did these things, and thank you especially to those of you who responded positively to change when challenged by my children.

I thank you because you are/were rare. Like an endangered species, hard to find, at risk of extinction, often being slowly extinguished by systems. Thank you to those of you who are like my secondary school teacher sister-in-law, psychologist/teacher uncle, and primary school teacher/principal uncle; those who are like my mother, who intuitively tuned in to the individual; individuals like my father, who learned to listen and learn from others (experimenting, modelling and teaching what he learnt), and standing boldly for those who had no voice.

 

Sadly, to be a ‘shifter’ in a mainstream system is not easy, painless, comfortable, or the way to make and keep friends easily.

So, kudos to those who will shift and be shifted for the benefit of the other, and consequently for the benefit of the whole… us.

1/1/2018

More Stories to come

The Family’s Experience – For the Educator and Professional

Paper presented at SPEVI 2015

Gina Schmidt

 

 

Smidkids

 

Reading of  “The Seed”

 

Today I have two observations I’d like to highlight.

Perhaps more by way of reminder than anything else, or maybe things you hadn’t considered yet.

 

Both observations I’d like to share relate to our tendency to forget, or at least relegate to the back blocks of our mind the understanding we may already have of our diversity, individuality and uniqueness – both personally, as families, cultures, and communities.

 

One of the most precious, and most threatening aspects of the family’s experience can be the medical and educational professionals’ involvement in our lives.

Sometimes the diagnosis you give, or the therapy you prescribe, or the new way of modeling and teaching you offer is the greatest relief, or hope, or validation for us.

Other times, these things cast us off into grief, or despair, guilt and/or isolation. Hopefully our journey involves some experience of all of these things, which would be considered ‘normal’.

From now on, you are part of our lives and our families. We may come to your office, but often you enter our homes. You observe us as we interact, play, eat, walk, read, cook…I could go on. Because our interactions are connected with many intimacies, as well as general functions of life, we may become close.

Alternatively, we may feel you’re more a part of our family than you do. Or you may feel more a part of our family than we feel you are.

We need to help each other understand what the nature of our relationship needs to be.

We need you to remember that we are a family, as you have your own family. Sometimes we need you to remind us that you contribute to our family, but we are unique and will determine our own family’s path.

 

 

I have experienced both. A very close and personal relationship with professionals built over time and three children. Also the intrusion of some; presuming positions and responsibilities within our family which were not offered, nor welcome, nor helpful.

The latter can be confusing for our children and blur the lines between roles and to whom our children are accountable. The former can be a beautiful collaboration of security, fostering growth and confidence in families – also a tangible illustration of the popular African proverb, “It takes a village to raise a child.”

 

 

My second observation is something we usually associate with those outside of the disability or, specifically this week, the vision impairment community.

 

We all hold to particular biases or preferences. Some biases are unhealthy because they are hurtful and damaging to someone else or ourselves. They may stem from false assumptions as opposed to being informed. Others though, are differences because each of us is unique, and each of our families, cultures and communities are unique.

There are choices we can make in relation to developing our young people or in maintaining the life choice of an adult with a vision impairment, and they are just that – choices.

Choices about the medical procedures we will, or will not embrace.

Choices about learning grade 1 or 2 Braille first off.

Choices about handling reactions to sensory stimulation, or lack thereof.

…toilet training, private or public schools, which piece or brand of technology best suits, city or country…

The list is endless!

I’ve learned that you all have your preferences, as do I. As does each individual, family and professional here.

Helping us to be informed but not overloaded would be the greatest gift of service you could offer us. Perhaps let us know the options, maybe another we can ask. Then help us follow up on the thing that interests us most. You never know, we may end up with the same preferences as you.

 

I’ve noticed that smaller communities are often a reflection of the broader community or culture, but the smaller may influence and therefore be reflected in the broader instead.

Looking forward to our little community being a positive influence in the broader community at large.

 

Let me finish by reading the end of the story, “The Seed,” to you again.

 

…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.

 

 

Your Story

Since reflecting on TED talk by Chimamanda Ngozi Adichie, ‘The Danger of a Single Story’

 

You are not a single story

You’re not one day, or year, or scene

You’re not an isolated statement

Nor one act, or choice, belief

 

You’re not defined by one relationship

Whether healthy, whole or torn

You are not your job entirely

Not your sport, school, song or storm

 

You’re not the family who bore you

Not those who raised, rejected or embraced

Neither those you’ve borne and chosen

Nor the one’s you wish would be the case

 

You’re not the nation you were born in

Nor the air space, nor the sea

Not the style of hair and body

Whatever they may be

 

You are, who you are

You will be, who you’ll be

You are every piece within your journey

Just as it is for me

 

22/8/2014

For The Love Of A Child

When I said I’d love you always

When I said, no matter what

When I said I’d hold within my arms

Whoever I begot

Well, I meant all I was saying

Well, I meant every single word

Well, I meant in all sincerity

I’d adore my little bird

 

So, sing my little songbird

So, sing in your own way

So, sing with voice, or print, or hand

Sing while you are at play

You speak in different tones sometimes

You speak without a sound

You speak from deep within your soul

Like no other I have found

 

Though they see incapacity

Though they see a misfit

Though they see their life hindered

I see my life on fire; lit

New vision now have I

New vision now could they

New vision now could all embrace

Oh try, now, while you may

 

 

4/5/2014