A Heart Pierced

Assumed I, you would not see me

This, for us, not the pain to be

But stabbing, piercing agony

At tries to sever the heart and soul of thee

 

Eating, sleeping, snuggling you

A people’s person; loyal, true

Though you will seek to please, retain

They will puncture you, to stay the same

 

Affection will your offer be

To those who will not ever see

Your insight and your contribution

Dismissed, unseen, is your confusion

 

Loving, you will love complete

But many will not save a seat

A pierce-ed heart with bloody stain

Like mine, you will sometime sustain

 

4/12/2016

A Heart Squeezed

Revisit a potential loss

To manage, will expect of course

With loss confirmed, it’s no surprise

This time ready, more the wise

 

Feeding fast, though sleep eludes

Enthusiasm, but holding wounds

No praising, hugging, teaching for

This one, will even any score

 

Assured of self, from day of birth

At home assured of all her worth

But other’s insecurities – and need for all conformity

Will squeeze, compress my heart with ease

 

To know your value and your worth

While others doubt, you yourself birth

Your own heart knows compression’s squeeze

As stifled, thwarted you’ll not be pleased

 

4/12/2016

A Heart Pricked

My heart was pricked; a short, sharp sting

My first-born, as I looked at him

Would not, in turn, behold my face

My gaze of love, he would not trace

 

It’s true, there was a heartfelt ache

This path of life I would now take

The ache did not, though, linger long

But late in time, return in song

 

The latter song of long lament

Came with fever, a nightmare sent

And seizures; vacant, empty gaze

Salivate, then sleep for days

 

Lamenting long, and spent of days

To fight for teaching, what a maze!

Some would try to empathise

But weary soon of compromise

 

And now the sting, it lingers on

As time now brings you, your fight song

A world not used to other wise

Lamenting sting now your sweet prize

 

4/12/2016

You

What’s in your heart?

Are you afraid to see?

Will it be what they’ve told you?

What you think it will be?

 

What is more frightening,

The truth or the lies?

In truth, is there freedom?

In falsehood, bondage and ties?

 

Around your heart’s surface,

Have you set up a shield?

Detachment, a pretence

For what your inner-heart feels?

 

Your outer-wall surface,

Your shield around self,

Is not intrinsically you,

But sheathing observed on a shelf

 

The inner-most substance

Of your design before time

By internalized truth and love

Is being strengthened, refined

 

21/10/2016

Talking with My Child About Being an Exception from the Mainstream

I must confess that this is a question I had to consider for a while when first asked, particularly as it was a question of ‘when’ to talk about it. After knowing that my first child was not able to see, there had never been a moment where this was not now part of our life – so it was talked about.

I realise though, that this is not everyone’s experience.

Acceptance of change into our lives is part of the course toward a new ‘normal’; as is denial, resentment and embracing the change. You may not be ready to talk to yourself about your child’s experience (or your own), let alone talk with your child about it. Also, your child may not be ready to talk about their experience, which limits any talking you may do as well.

From my life’s experiences generally, my degree of acceptance determines not only if, but also how, when and with whom I will talk about my life’s experiences – generally or specifically.

 

My experience was that my children were blind from birth. Though my eldest was not diagnosed until 5 months and my two other children could not be until after birth, they have always been blind and we have known no other experience of each other. When I consider unknown vision deterioration or sudden vision loss of a child or young person, I recognise so many differences to my ‘normal’. Having said that, acceptance of the new ‘normal’ (even a still changing ‘normal’) by parent and child, will still be a determining factor around talking about the vision loss.

My children were unfortunate/fortunate (you’ll have to ask them) to have a mother who talks about everything and anything – can be a hindrance with teens and young adults but that’s another post – but I was also taught by early childhood educators and speech therapists that I needed to talk about everything; describe everything; provide opportunities to experience everything (that we could anyway); encourage a developing understanding of all that was experienced and described. This included explaining that I could see what they were doing through the glass of a window, but not a timber door, and that they could not ‘see’ through either of them; that we were walking up stairs and counting them, then down stairs and counting them; that I could see the trees in the paddocks (fields) through the car window, and as we drove past them it appeared as though they were moving because we were (actually, that took a lot more explaining); reading print means my eyes can see the words without them touching the page like their hands do when reading braille…If the fact that they do not see, and I do, was not discussed and described then they would have had a limited view of the world in which they live, and the people with whom they live.

It was also important for my children to know that there were many others who did not see, sometimes in a similar way to themselves and other times in a different way; that I wear glasses to be able to see things clearly; that glasses wouldn’t help them (and why – glasses don’t help a retina which isn’t working properly, what part of my eye benefits from glasses); to meet braille readers, children and adults; using canes; meeting dog guides; riding with people in their wheelchairs (which requires someone else who has accepted their own ‘normal’ – also, the rides were offers not requests, looking at someone’s wheelchair is something I would have requested though)…

 

Much of our fear and resentment in life comes from not knowing, from the unfamiliar, the unrecognizable (difference). Knowledge isn’t every thing, but it is a very important thing. As parents, the more we embrace and pursue our own knowing and learning, the more we will pursue opportunities for our children’s own knowing and learning – of their own, they will not and should not be carbon copies of us.

My hope for you, is that you will embrace who you are and who your children are – each individual, valuable, worthy one…whether these children are your own, your class, or under your training of any other description or timing.

Choosing a Service Provider

 

I was observing a conversation amongst families a short time ago about the difference between two particular service providers. The original question as to who used which service progressively rolled into the question of why families made the choice that they did. These were my thoughts in relation to that conversation.

 

Any such discussion may be best served by beginning with the acknowledgment of the difference inherent in each individual, family, worker and organisation. Following on from this is the nature of relationships generally; that we get along (or not) with certain people and groups personally and professionally. This alone can influence who we go to when seeking out a service. Our experiences can make these conversations quite heated, or blasé, and the conversation about schooling would go similarly.

Aside from personalities clashing or clicking, it is true that not all organisations operate in a healthy or informed manner – nor do all workers, families or clients.

In Australia at present there is much change around funding and service provision as we progressively move toward a National Disability Insurance Scheme (NDIS), which (in my current, limited understanding) will see individuals and families using service providers who can serve them in meeting the goals they have set in their own plan; utilising funds approved for spending on this plan.

 

There are multiple considerations in determining how often a service is provided, in what manner, and how we respond to these things. Some may seem obvious, but it may also be that those that are part of our own experience seem so, and not those that are of another’s experience.

For example:

I have raised my children in a rural area. As babies, my children received services once a month that many of their city peers received weekly. Another service they received as slightly older children came 6-8 weekly, not weekly or fortnightly as in the closest city – and from the same service provider. When they were a little older again, but still children, a new service from an established service provider emerged and we were offered the previous 6-8 weekly service at fortnightly intervals – so we changed. This service provider had a different funding arrangement, and this influenced their services and provision of them.

Another consideration might be the way that the worker or service provider delivers the service. On occasion this could mean that they deliver it poorly, but it could also mean that their perspective or priorities differ to the client or family’s. It is helpful to seek input from other users, especially when new to accessing services, but we should also take care to recognise that sometimes we are each experiencing difference rather than “good” or “bad” service.

We might also consider communication of expectations – ours and the service provider’s. An organisation should have a policy around their communication with us, which ought to include our responsibilities toward them as well as theirs toward us. Not every organisation will communicate well, and we will not always know what we need to be informed of. Funding arrangements, time allocation to specific services, distances travelled, are all things to enquire about or for clients and families to be made aware of. An abrupt disruption or end to a service without any notification is not appropriate, but informing clients of what is/may occur in the near future is. Sometimes a service provider cannot influence the course of the organisation, but clients and their families’ lives are affected by such changes, not just their occupation, job title or working hours. The client network will form opinions about service providers based on the information shared on particular experiences – positive and negative. Likewise, organisational networks will get the gist of which clients have the potential for a positive or negative working relationship. Healthy, respectful communication which shows the value of the client, family and professional/organisation will foster positive outcomes in service provision and client goal-achievement.

 

I’m sure there is much more we could consider, but my hope is that these few suggestions might prompt us to think through our responses to each other both professionally and personally.

 

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.