Teaching

Experience Has Taught Us Things

For many parents of children with health issues or mainstream differences, our journey began in hospitals, consulting rooms, early education facilities, and with professionals from these environments in our homes.

Sometimes these experiences brought relief, support. Most often, though, they brought grief, trauma and confusion – either alongside relief and support, or with the absence of them. A professional or medical person/s (or professional/medical environment) may have affected us in this way unintentionally, neglectfully, deliberately, just by nature of the environment we and our child needed to be in, and/or the condition itself that our child was experiencing.

What’s important about these early experiences is that they taught us things; experiential things; things we still react to; things we have processed and respond appropriately to; things that stir up emotion; things that lead to revisiting trauma; things that make it difficult to trust; things that have given us an understanding of the environments and professions we are now familiar with, but may not have been previously.

 

 

Life changing events take time, support, effort, willingness, process, reflection, grief, support, emotion, experimentation, withdrawal, acceptance, energy, support, progressive and regressive re-engagement – and more – in order to know and understand what has happened to our child, selves, and family, and in order to like/accept our new ‘normal’.

Support has a different meaning for different people and circumstances. As a noun we can be a support, being the one leaned on or sought for assistance. As a verb we can offer or give supports, like material, physical, financial assistance. My dictionary searches tell me that the word ‘support’ originated with words meaning to tolerate, carry from below.

If I am to support by tolerating, I will sit with people in silence; in telling their story on repeat; in distraction; in emotion; when numb… I will be interested in their story, experience (past and current), and the person themselves.

If I am to support by carrying from below, I will do or provide things which will lift the other up; allow them to fulfil their responsibilities; remain in their place; continue their movement. What might this look like? Providing meals if the days battles make cooking too difficult; driving to and from places; caring for other children; washing clothes, dishes, house, car; finding contacts and information to support in other ways; attending appointments with; taking notes during appoints for later reflection; offering to do a movie night at home with them; providing in some way for both parents to be together…it must be the things that the family find supportive though, not necessarily what I would find supportive (though it may be both).

 

 

How and when we respond to people (including ourselves), and circumstances will be influenced by a great many things. The fluid or static nature of our child’s condition, our financial stability or lack-there-of, geography, culture (ours, our family’s, society’s) etc. But there are three types of relationships we parents will have, that will have some of the greatest influence on how we continue to respond to our new ‘normal’ – our relationship with ourselves, our family, and the medical, educational, financial/governmental individuals and the organisations/departments they answer to.

One of the generally acknowledged aspects to the grief process toward acceptance, is blame. We may blame ourselves, our partner, our child, the medical professionals, educational professionals, government, society as a whole, God/the universe (whatever that means for each of us)…Part of our journey to acceptance of any sort will be ascertaining whether there is responsibility for someone to own, or whether we find ourselves and our child in one of those inexplicable, and unaccountable circumstances of life which come to us all. The acceptance destination of this journey will not necessarily be clear-cut, immediately obvious, apparent to others, of particular duration, definitely not painless nor comfortable, and sometimes unachievable.

It is very difficult to enter a world we know very little, or nothing, about. When this is thrust upon us, it is even more difficult. If there is no concrete rhyme or reason for our child’s condition, this journey to acceptance may well be a battle with ourselves to grasp a situation where there is no one who is responsible. Be patient with yourselves, I ask your supporters to be patient with you and themselves, and for medical, allied health, and educational professionals to be patient also. This grief journey reappears as your child’s milestones are achieved or missed, and as children are growing constantly, this will bring new opportunities to grieve over time.

 

 

If our child and family’s new path is due to deliberate or unintentional decisions, actions and/or words in hospitals, consulting rooms or education facilities, the journey will be more painful, take longer, and be inhibited if those with any amount of responsibility do not accept it. This will also be true when the diagnosis is of no one’s ‘fault’, but the family and child have been battered by insensitivity, judgement and presumption as their journey began.

Our families and friends will also contribute to the way we process through grief and along our new path, our new ‘normal’. The things you believe about us, yourselves and the choices you think we should be making will have negative or positive impacts on this journey we’re taking. Some of our relationships will not recover, some professionals will never see us again, some types of relationships will continue to carry the memory of trauma for us…and we respond according to all the things we have learned by these experiences – healthy and unhealthy.

As we heal, our responses will change accordingly. Some of the trauma will be so deep though, that even when we respond appropriately, and in a measured way…it will have been a mammoth task of concentration to do so.

 

 

To all the families battling through, I applaud you.

 

To all the families trapped under a cloud, I wait with you.

 

To all the families who’ve found their new ‘normal’, I rejoice with you.

 

To the professionals who strive to see people, I thank you.

 

To the professionals who have wounded us, I have hope for you.

 

To the families and friends who walk with us, I’m grateful for you.

 

To the families and friends who chose to walk apart from us, I release you.

 

 

 

Gina Marie 7/9/2018

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

Quotes and Questions When Raising/Teaching Students With a Visual Impairment

A couple of quotes that have stood out for me, over the years I have been raising my children who are bright, loving, independent, unique and blind. Also some questions to be continually asking ourselves.

A number of Early Childhood Educators working with children with visual impairments used to tell me they did a lot of “hand-sitting” (as with teenagers one does a lot of “tongue-biting”).

Hand over hand manipulation, and too much information without experiencing, fosters an environment of little or no learning; the information or experience is not assimilated into the life of the learner.

A couple of teachers for students with visual impairments have said that a good integration aide will “do themselves out of a job”.

The object is not to integrate the aide/assistant into the life of the student, but to have the student integrated into their own community of peers; thereby no longer having any need to be present, the student having become independent, and interdependent with their own group of peers.

A past presenter at the South Pacific Educators In Vision Impairment (SPEVI) said that the two skills he used every day of his life were orientation and mobility, and social skills. These were the two neglected for his entire schooling!

All the information in the world, and even access to it, will mean nothing if I cannot move about in, and interact with the world…my world. If I cannot belong, I will have no purpose or hope.

Some questions to leave in a personally prominent, but nevertheless private, place to foster a regular consideration of one’s motives and interactions.

Am I interacting with (name) in ways that make me an indispensible attachment to him/her?

…or…

 Am I interacting with (name) in ways that make my constant presence redundant?

 

 Are my interactions with (name) moving her/him toward independence, and interdependence within his/her peer group?

 

 Who can and will I talk with about resources, ideas that have worked already, suggestions and my own accountability in these things?

I would suggest that the student/child be named (whether this is for school or home) as one is then considering the particular person one is interacting with.

10/8/2015

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.

 

 

This Journey

If I could draw a picture of

This journey travelled on my own,

What story would it tell you,

Which colours would have shown?

 

The beginning would be darkness

New realities unseen

Goals obscured and jaded

Mist and fog my only scene

 

But with you, my eyes are opened

You each shine light on paths ahead

Darkness fading in the wake

Of information shared

 

I see movement, light and colour

A future hope for me and mine

You each brought hue and shade and pigment

If left alone, no sun would shine

 

Thank you all for being part

Of this journey of my life

And for the pieces of your own path

That brought promise into mine.

 

 

15/1/2015

For SPEVI

 

SPEVI 2015 Time Out

Process, progress, organise

Sift and strain and scrutinize

Think, reflect and ruminate

Pre-occupy and inundate

 

Withdraw, compose, concentrate

Stillness, quiet, separate

Settle, soothe, lull and quell

Listen, hear, perceive as well

 

Befit, apply, appropriate

Attend and differentiate

Select, determine, designate

Prefer, elect and allocate

 

Undertake!

 

SPEVI

14/1/2015

International Day Of People With A Disability

Please

Please don’t make uninformed assumptions about my needs or requirements.

My peers and I will learn prejudice from good-intentioned ignorance.

 

Please don’t demand my independence without teaching it.

My peers and I will learn dis-ability.

 

Please don’t demand I ask for or receive help at your demand.

My peers and I will learn that I’ve no right to my own life and choices.

 

Please don’t decide my contribution based on your time constraints, energy level, prejudices, fears, and assumptions.

My peers and I will learn my only right is to live by another’s leave.

 

Please don’t decide what provision you can offer me after the funding’s been spent on everyone else’s needs first.

My peers and I will learn that my needs are wants, and not necessity.

 

Please don’t decide to ‘do for me’ what would make you feel good, important, needed, helpful.

My peers and I will learn that how you make me feel is irrelevant.

 


 

Please ask me what my needs or requirements are, or someone who has already found out what my needs are.

You can then meet the ones you are equipped and/or employed to.

 

Please ask me what independence means to me, or someone who has already found out what independence could mean and how it can be achieved for me.

You can then make informed choices about teaching it.

 

Please ask if I want/need help, and what help that might be.

You can then ‘help’ instead of hinder me.

 

Please ask me what contribution I would like to make.

You and I together can then negotiate and problem-solve our mutual contributions.

 

Please ask yourself and/or us all how our funds will best meet the needs of the group, school, community, family, country…

You and I will then each be acknowledging and meeting each other’s needs.

 

Please ask me how I feel.

You may develop:

empathy more so than sympathy

compassion more so than frustration

growth more so than ignorance

community more so than isolation

 

3/12/2014