Musing

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

Grateful!

I am grateful for a great many things, some of them healthy and positive in and of themselves; others healthy and positive because I learned, as I was being taught, something/s healthy and ultimately positive, subsequent to those initial “things”.

I am grateful to have grown up with Christian parents; I am also grateful that my parents were first generation Christians, without historical and generational ties to systems, theories, expectations and presumptions – free to learn relationship with their designer and restorer according to design and his character – relatively unencumbered; I am also grateful to see the finite, independent, human tendency to box, enshrine and sequentially define persons and groups, even in those less encumbered (including myself) – we are all human, finite and dependent by design.

I am also, in a broad sense, grateful to be living outside of most “boxes” – some naturally so, others a fight to leave or to stay out of; in the moment, though, living outside of the boxes (and standing for others who do) is hard work, painful, lonely, exhausting; grateful to have been studying community services, learning new experiences of humanity from fellow students and teachers (community servers) – and/or further definition or refinement of my own experience/understanding of humanity.

I am grateful to be the sibling of three other “out-of-the-box” thinkers; I am ultimately (though not in the moment) grateful for the conflict this brings as we challenge each other with regard to our own boxes; I am especially grateful that our love of, and loyalty to each other is not diminished, regardless.

I am grateful that my design by, and restoration to, the image bearing inheritance of the creator – refined by experiential, reflective, learning, growth – led me to tune in to the children granted to me, largely independent of boxes and main streams; my gratefulness also extends to their forgiveness for when I have slipped back into boxes, inadvertently or intentionally tried to box them, and painfully, gradually had to recognise the imaginary nature of said boxes.

Though not true of every day, today I am grateful to be human; today I am grateful to have been designed for a dependent, love relationship with my designer; today I am grateful to have been designed for an interdependent, love relationship with other humans; today I am grateful I’m being restored to be more authentically human, more humbly human – living in acknowledgment of, and according to, the truth of who my designer is, who each of my fellow humans are, and who I truly am in relation to these other truths.

…grateful…

28/5/2017

Consolidation

As I was chatting with some other parents of kids with a vision impairment about reading and writing tools, I found myself thinking and talking of the things that solidify learning for me – and for others.

I used to only remember the things that were written onto the calendar on the toilet wall, ’cause I saw them repeatedly I think, and a form of rote rehearsal perhaps. Reading an actual paper book, remembering where on the page a favourite quote is, has also been a source of remembrance for me (not so much with electronic books). If I underline something I can, of course, look back and find the spot, but I actually remember the things underlined more than general reading…and if I write it, or about it, in my journal it is more cemented within than ever. Then there is the reading or hearing I have written poetry about, or heard songs about; forever a part of me.

An aunt recalls and consolidates by associating song already ingrained with new experiences and learning. A friend’s son on the Autism Spectrum showed a month or two’s retention when he was able to continue his drawing and cutting while a lesson was taking place. At least two of my three children have said that their retention of books and school/university work is greater when they read the braille (on paper or braille display) rather that just listening to audio.

The more we are immersed in something, it seems, the more it means and the more likely we are to remember and perhaps then transfer that learning.

The more comprehensive my children’s experiences of something as they were growing up, the more comprehensive their understanding of the object or experience – and the less they feared things that had produced fear when they were unknown.

Tactile fears of sand, seeds, wet and sticky substances when guided by early childhood educators, were overcome or understood with immersion mixed with favourite or already pleasing items. Desensitising occurred alongside experiential information allaying imagined discomfort, pain or other physical/emotional response. The experience could still be disliked, we all have preferences for and against something, but willingness to experience rather than run from provides untold possibilities. Willingness to experience facilitates informed decision-making rather than reacting and remaining there without consideration; being able to pass through physical, emotional, psychological responses attunes us to ourselves, and in turn we may recognise these things in others; empathy; exhilaration; repulsion; curiosity; physical strength; broadened horizons; embracing imagination…

Some of these experiences which began with aversion and led to embracing were:

  • favourite toys hidden in a large tub of bird seed or sand pit
  • mixing instant chocolate pudding with hands and spoon
  • slime (cornflour and water) hand painting all over the kitchen table
  • cracking eggs into a bowl, completed half shells progressing onto breaking and mixing shells and egg all together
  • having brushes of many sizes and textures swiped over feet, hands, cheeks etc.
  • calves and lambs sucking on fingers (no one adjusted to this one!)
  • scented play dough, cake mixture, making up their own recipes, baking them and eating what is baked
  • Standing up on the moving train, for 3 hours!

We are whole people, multi-faceted. The more of me that is involved, the more involved I become, and the more I become involved, the more I become who I am.

 

I Choose…

I Choose

I choose to be seen, heard, accepted, loved and chosen…I commit to do the same (coloured words, written on black background)

So, International Women’s Day has been and gone. Lots of articles and videos on great women leaders, carers, adventurers and survivors – which I didn’t read. Of the myriad offerings, I watched one video and read one article on domestic violence. I have a very few observations to share from that which I have either witnessed or experienced:

1. I agree with those who tell us that emotional, verbal, psychological and spiritual abuse, are abuse. Also that one or all of the above are pre-cursors to physical and sexual abuse.

2. I agree with health care professionals, researchers and survivors that violence of any kind, including those above which you may think aren’t really violence, escalates without intervention and doesn’t ever get better by itself. (For Christians reading this, a ‘God moment’ is intervention…by God!)

3. Domestic violence isn’t just from spouses (of whatever genre you have) or parents of children and teens. Extended family, their friends and parents of adults abuse too, that includes emotional and verbal.

4. Both spouses can be abusing each other, including physically – and both are abusers, and both are victims. Look up co-dependancy.

5. Emotional and psychological abuse of woman over man, is abuse.

And finally a few insights from Brene BrownDaring Greatly – How the courage to be vulnerable transforms the way we live, love, parent and lead.

When shame becomes a management style, engagement dies.

Vulnerability is based on mutuality and requires boundaries and trust.

Vulnerability is about sharing our feelings and our experiences with people who have earned the right to hear them.

Vulnerability without boundaries leads to disconnection, distrust and disengagement.

We need to feel trust to be vulnerable and we need to be vulnerable in order to trust.

The result of this mutually respectful vulnerability is increased connection, trust, and engagement.

Thanks for your time.

 

Coaching the Blind

People who use their eyes to receive information about the world are called sighted people or “people who are sighted.”

Sighted people enjoy rich full lives, working, playing and raising families. They run businesses, hold public office and teach your children!

 

HOW DO SIGHTED PEOPLE GET AROUND?!

People who are sighted may walk or ride public transportation, but most choose to travel long distances by operating their own motor vehicles. They have gone through many hours of training to learn the “rules of the road” in order to further their independence. Once that road to freedom has been mastered, sighted people earn a legal classification and a “Driver’s License” which allows them to operate a private vehicle safely and independently.

 

HOW TO ASSIST A SIGHTED PERSON

Sighted people are accustomed to viewing the world in visual terms. This means that in many situations, they will not be able to communicate orally and may resort to pointing or other gesturing. Subtle facial expressions may also be used to convey feelings in social situations. Calmly alert the sighted person to his surroundings by speaking slowly, in a normal tone of voice.

Questions directed at the sighted person help focus attention back on the verbal rather than visual communication.

At times, sighted people may need help finding things, especially when operating a motor vehicle. Your advance knowledge of routes and landmarks, particularly bumps in the road, turns and traffic lights, will assist the “driver” in finding the way quickly and easily. Your knowledge of building layouts can also assist the sighted person in navigating complex shopping malls and offices. Sighted people tend to be very proud and will not ask directly for assistance. Be gentle yet firm.

 

HOW DO SIGHTED PEOPLE USE COMPUTERS?!

The person who is sighted relies exclusively on visual information. His or her attention span fades quickly when reading long texts. Computer information is presented in a “Graphical User Interface” or GUI.

Coordination of hands and eyes is often a problem for sighted people, so the computer mouse, a handy device that slides along the desktop, saves confusing keystrokes. With one button, the sighted person can move around his or her computer screen quickly and easily. People who are sighted are not accustomed to synthetic speech and may have great difficulty understanding even the clearest synthesizer. Be patient and prepared to explain many times how your computer equipment works.

 

HOW DO SIGHTED PEOPLE READ?!

Sighted people read through a system called “Print.” This is a series of images drawn in a two dimensional plain. People who are sighted generally have a poorly developed sense of touch. Braille is completely foreign to the sighted person and he or she will take longer to learn the code and be severely limited by his or her existing visual senses. Sighted people cannot function well in low lighting conditions and are generally completely helpless in total darkness. Their homes are usually very brightly lit at great expense, as are businesses that cater to the sighted consumer.

 

HOW CAN I SUPPORT A SIGHTED PERSON?!

People who are sighted do not want your charity. They want to live, work and play along with you. The best thing you can do to support sighted people in your community is to open yourself to their world. These people are vital contributing members to society. Take a sighted person to lunch today!

Be nice to them, some of my best friends are sighted people.

Author unknown.