Education

A Private Conversation with a Fellow Parent – Some Reflections (with permission)

Sometimes we parents get to guide our children through learning experiences which are unfamiliar to us, outside of our current comfort zone, and seemingly not within our perception (or another’s) of the mainstream gig of ‘growing kids’.

One way to tackle these moments might be to chat with someone who is further along the parenting journey than we are…so, I recently got to have a great chat with a go-getter parent.

As my adult children have all been blind since birth, this chat was essentially around having a conversation with a child younger than mine, about the differences between a parent/child relationship, and the parent/parent relationship. It came about, though, because the child had heard mum and dad during intimate moments.

Many of us have had the experience of walking in on dad and mum during sex, many of us have had our children walk in on us, and many of us feel either uncomfortable or unsure about how to respond. Some of us also have the consideration of what our children can/can’t see, hear or comprehend no matter what the new experience encountered.

After hearing the parent’s story of what had been happening with their child, how the parent themselves felt about the kind of conversation they may need to have, and the child’s vision impairment coupled with some level of communication/comprehension difficulties, we brainstormed some strategies for the immediate, and some suggestions for in the future.

The child had been repeating sounds heard from mum and dad’s room when they’re alone, and those sounds were beginning to be repeated at particular times. The parent believed that the frequency was increasing and wondered what, if anything, she might do about it. Since there was perceived future negative impact for the family and their relationships, and seeing a potential learning opportunity for the child, these are the strategies we worked out together:

  • Talking with the child about their own special relationships (e.g. with a grandparent or sibling)
  • Discussing something that the child does only with that person
  • Explaining to the child that the sounds heard from the bedroom were only for mum and dad, as their special times with another family member are theirs alone

Because of one of the diagnoses the child has been given, it was recommended that a chat with the educational psychologist that the family already connect with might be a good idea to talk through some of the possible related experiences they may have with the child as they move into teen and adult years.

For the parents, I suggested that the bedroom may not be the only place for physical intimacy. This might reduce or eliminate the child associating what was heard with that room, and the parents. It also brings with it some new interest for the couple relationship…nothing wrong with that!

Who could ever say that we don’t have anything to learn by being a parent?

And thanks to the other parent for trusting me with their story, and wanting to share some of their own journey so others may have a few more tools to work with.

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.

 

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

Cane Verses Guide Dog

By Christine Casey…Teacher, musician, friend

Since I received Lainie, a number of people have asked me how using a guide dog is better than using a cane. I’m still not sure that I can explain it well, but here is a comparison of how I felt the other week, walking along Swanston street with Lainie compared to how I have felt doing it with a cane earlier in the year.
With a cane:
I must listen carefully as concentrating to hear voices, footsteps, traffic and the echoes off buildings, posts and pedestrians helps me to keep myself orientated. Despite my careful listening resulting in a greatly reduced number of collisions with objects and people, my cane is constantly becoming entangled in signs, seats and legs. Every thirty seconds I seem to be muttering an apology. My speed varies considerably as I focus my concentration on dodging things and people and listening for clear paths. The appearance of a street sweeper or similar constant and loud noise causes frustration as it reduces my ability to hear potential obstacles. I secretly wish the Melbourne City Council would ban all buskers as they attract crowds which block my way and require careful negotiation. While I realise that my fellow humans are probably not paying me any attention, I feel incredibly conspicuous and somewhat awkward. By the time I make it to my destination, I’m longing for a rest and some quiet.
With a guide dog:
As the dog picks a path through the crowds, I am able to relax and appreciate the sounds of the city. I hear the tram bells, and notice music drifting out from doorways and I catch snippets of conversation from passing people. A wide variety of scents waft on the air. There is a gentle sun, and a slight breeze. I feel the dog’s movements through the harness handle and follow where she guides, only paying enough attention to ensure that she continues in an overall straight direction and to detect if she should become distracted or uncertain and require encouragement or instruction. My steps flow and there is little need to vary speed, except for especially crowded patches. The music of the buskers adds something special to the atmosphere and I feel a great fondness for them and this city which I now call home. The free-flowing nature of the journey makes me feel equal to my fellow pedestrians and, while I do overhear the occasional comment on the clever dog, I feel as though I blend into the crowd. When I reach my destination, I am somehow both energised and relaxed: ready for the next task of the day.

Fear

By Stuart McDonald, Accredited Exercise Physiologist.

I said in my last post that we can let fear be, allow it to exist in us, to be there, real and potent.
I do not say that we should pander to fear, seek it out or do nothing about it. Rather, I say that fear is something that is legitimate and that we experience for a very good reasons – even if we can’t work out what that reason is…

When we experience fear, our body changes in many different ways. In the brain, certain circuits fire up, and certain hormones are released throughout the body. Our muscles react, our breathing changes, our blood vessels change, our memory systems become more potent and our body wants to do something about the fear. It is as we suppress the fear – as we push it down, pretending it is not there or fooling ourselves into believing we shouldn’t feel fear – that we don’t allow the body to respond.
Not allowing the body to do what it is most naturally made to do – and not allowing it to do that thing over and over again – will result in the body finding other ways to express that fear. Typically, it will be things like: Sudden, explosive reactions to fearful events; sudden angry outbursts; physical and verbal aggression; agitation; constantly tense muscles; anxiety attacks; guilt and depressive symptoms; poor sleep quality; stress-related symptoms – cardiovascular issues, breathing issues, metabolic issues.
Sounds stupid, doesn’t it?
Well, that’s the body and it’s not stupid, it’s beautiful and amazing and sensible.
You see, there is no “mind-body” connection. That’s an old idea and it’s a little outdated. By about 20 years. What there is, is a “mind-body” (see what I did there? No connection). The mind and the body meticulously interplay, they intertwine and feed one into the other. Your mind and sense of self is only what it is because it receives information all the time from your body – and your body is what it is because it is changed by the mind, which responds to your body (and your external environment).
When the fear instils itself in your body, it is a conscious representation of the emotion of fear that your non-conscious self is responding to. The body is changed because of the fear – there is a perceived threat of some sort – and the non-conscious self makes that fear accessible – you become aware of the fearful changes in your body and interpret those as “I am afraid”.
Now, I don’t know bout you but when I ignore internal states like that – say, oh, I don’t know, like a full bladder – that can end up all kinds of messy. And smelly. It works like this: the muscles of the bladder stretch as the bladder fills up and they constantly send a signal to the brain. When they stretch a certain amount, that signal changes and the brain then brings the signal into the awareness of your conscious self – you become aware that the bladder is (almost) full. It was filling up and the signal was going to the brain all that time but you were only made aware of it once the signal needed to be dealt with.
You only became aware of the signal once the signal needed to be dealt with.
Fear, too, has a signal. It is one that occurs throughout the whole body – it’s more of a combination of a host of signals – there’s the central neurological one, but there’s a whole lot of other ones as well, depending on the thing you’re afraid of. They can be physical stimuli (that muscle is stretching too much!) and they can be cognitive stimuli (There’s no way in heaven I can pass that exam!). Once the signal needs to be dealt with, the body makes the conscious self aware of it. The body was always sending the signal to the non conscious self, but it brings it into awareness when we need to deal with it.
And so, like a full bladder, fear is simply an experience the body wants you to deal with so that everything can feel a little bit more balanced, a little more okay.
The body brings the signal about the bladder into our awareness when it’s time to deal with it. And the body brings the fear into our awareness when it’s time to deal with it. And so we shouldn’t suppress the fear or pretend it’s not there or tell ourselves we shouldn’t feel that fear (you shouldn’t feel you need to do a pee?). It is instead a time to understand the fear; to explore the fear; to ask if the fear is warranted or not, grounded or not in truth? Or is it just my opinion?
When we are children, we do not know how to understand the signals about our bladder. Then we learn to. In the human body, if you don’t use it, you lose it. And so, with fear – if for 15, 20, 45 years we have stopped listening to our fear and have instead been suppressing it, running from it, pretending it doesn’t exist or feeling guilty about it (small or large) then we will need to rest ourselves like children again, children learning to go to the toilet. We will need to learn once again to listen to the signals of fear, to understand the body’s language, and understand what it is about this fear that is important. And like children toilet training, that is a thing that takes time and lots of frustration. And it is most rewarding.
It’s probably best to do this at a safe time, and not when the lion (metaphorical or real) is chasing us. In that case, just run. It’s what your body wants 🙂

Stuart McDonald

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.