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Actions Speak Louder – part 2

Merry Christmas to all of you who celebrate Christmas!  I haven’t written for a while.  I can’t say that it is because I have been busy with Christmas preparations.  I have been preparing for Christmas but I have still had time to write. 

I think I have been experiencing “writer’s block”.  I think the cause of that block is an emerging belief.  For me, it is time to begin acting more and thinking and writing less.

Some activities that I do, I will be able to share with you.  I won’t write about other activities because I would be sharing personal information about others that is not mine to share.

On a more personal note.  (The information is about me so I am free to share it.)  Today we are having our nephew’s family over to celebrate Christmas Eve.  I am looking forward to the excitement of my great-nieces and great-nephew as they ooh and awe over all the shiny presents under our tree.  They will love all the Christmas decorations that my husband has collected over the years.  These decorations sing and laugh.

I hope all of you can sing and laugh over the holidays.  I know that this time of year can be painful for many as they are reminded of what – and sometimes who – they have lost over the past year.  I have been very fortunate this year.  I hope to share with others through my actions over the next year and beyond.  Thank you to readers who sometimes challenged me over the first year of this blog.  Your ideas have been gifts to me.

Sheila

Merry Christmas

Merry Christmas (Photo credit: Wikipedia)

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Actions speak louder than words

 After almost 30 years as an occupational therapist, I catch myself wondering “How could we increase her independence?” or “Now that he can do that, how can we encourage him to meet the next step?” when thinking about the children I serve.  I know that some people want to increase their independence.  I understand that some people want to master the next step of an activity.  However, I’m becoming uncomfortable with reinforcing aspects of my culture that I find questionable. 

Who is really independent?  I would argue that no one is independent.  How much independence does our society believe is the ideal?  In my culture, men like my husband are considered independent.  They have full-time, skilled, good paying jobs.  They manage all of their personal care.  However, many of them have children.  They are not completely independent because they have relied on their wives and/or Day care providers to care for their children.  (In my community, most daycare providers are paid less than half what men like my husband earn.)   

Many of the teenagers I serve are considered dependent.  They may be unable to get and maintain full-time, skilled, good paying jobs.  They may need help with personal care.  They are children so I continue to urge them to develop more skills as I encourage my own children to develop more skills.   However, when does this encouragement cross the line and become “disabling”?  I struggle with this question almost every day at work.

I say that I struggle with that question.  Yet, I realize that if the child becomes aggressive, I have crossed the line.  I would like to prevent the aggression.  Maybe the answer is to encourage very small steps towards increased independence and/or skill in an activity.  I do that and often am able to prevent the child from becoming frustrated enough to respond with violence.

But what about the hostile messages my actions send to the child?  “You can’t feel pride and satisfaction with what you have just achieved.  It is not enough.  It will likely never be enough.”  “You should be able to do this yourself.  You are a burden to your helpers.  You can ease the burden on the people who care for you by getting better at doing this by yourself.”  I don’t want the children to serve to believe that is how I feel about them.

I want the children I serve to know that I think things like “I enjoy spending time with you.” “I admire you.  You are such a hard worker.”  “You deserve a rest.”  “You deserve to have fun.  Let’s have some fun.”  “I wish I could think of a way to make this interesting for you.”  “You are a shining star.”  But actions speak louder than words.  How can I make them believe these thoughts?

How can we stop the violence?

Today I want to write about how our disabling culture leads to violence by disabled people.  Before I begin, I want to be clear that I don’t condone physical aggression by disabled people.  In my job, I prioritize interventions so that the children I serve do not hurt other people. 

Impairment is not an excuse for bad behaviour.  However, our expectations of disabled children (especially those with intellectual disabilities and/or mental disorders) can push them to violence.  When disabled children hit, kick, push, or bite others, I believe that they are communicating that too much is being asked of them.

What does our culture ask/expect disabled children to do?  We expect a disabled child to be someone they aren’t.  We ask them to “be normal”.  We not only ask them to “be normal”.  We ask them to want to “be normal” – to believe that they are not OK. 

We expect their parents to want their disabled children to be different.  We even expect parents to push their children to be different.  Then when the children become frustrated or ‘rebel’ with physical aggression, we say their parents are not doing their job properly.  Disabled children and their parents are in a lose-lose situation within our disabling culture.  If parents of a child with an impairment choose to allow their child to be who they are, they are accused of neglecting their child’s needs (another form of “not parenting their children properly”). 

What needs to happen to eliminate the violence?  I have some ideas but I’d like to hear yours first.

Inadequate care is immoral

I’m not sure if I have written about my master’s thesis in a earlier post.  I graduated in 2008 so it has been a little while since I wrote my thesis.  It is called Work-Life Balance for Parents with Low Incomes.

I first became interested in work-life balance because in occupational therapy, we think about ways for people to have the time and energy to do the things they want to do as well as the things they need to do. Sometimes disabled people choose to ask for help to do some activities such as dressing so that they have the time and energy for activities that are more important to them such as work or socializing.  The choices of disabled children are often more constrained.  I will probably write about that on a different day.

Today I want to write about an interesting coincidence.  I am reading about ‘care’ and am coming across some of the articles that I referred to in my thesis.  As I was researching work-life balance, I found that the low value placed on care (of children, disabled people, ageing parents, co-workers etc.), contributed to people’s difficulties balancing their work and personal commitments.  I asserted that work-life balance would be more likely if our society valued the work of caregivers more than it does.  I believe that at that time, I was missing an important point.  Our society also needs to value children, disabled people, and ageing parents more than it does.

While writing “Work-Life Balance for Parents with Low Incomes”, I stated that our society’s tendency to dichotomize issues contributed to there even being an issue of balancing work with the rest of life.  Another dichotomy that I did not discuss at that time but am more aware of now is the artificial dichotomy of care givers and care receivers.  Most people are both care givers and care receivers.  Caring and being cared for are universal human experiences.  As such, it is morally right for care of disabled people to be more valued in our society.  Said another way, the lack of good quality care for many disabled people is immoral.

Sheila

 

The care relationship – Paid care givers

I have written about care in earlier posts.  Today I am pondering the experiences of paid care providers in care relationships. 

I am an occupational therapist and some might consider me a paid care provider.  Most of the time, I feel like I am consulting not necessarily caring.  I watch with my “occupational therapy eyes”.  As I share my observations and my tentative hypotheses, I problem solve with children and their parents and teachers. 

I feel like I am providing care when I am doing an activity like massaging a young infant.  Touching another person to give assistance is what first comes to my mind when I think of care.  This is the type of care I would like to discuss today (though I am learning that care can go far beyond this physical activity).

I am curious about the experiences, thoughts, feelings, and opinions of paid care providers and those disabled people whom the care providers bathe, dress, and feed.  How do supervisors, disabled people, and the paid care providers themselves decide when the care is inadequate, satisfactory or exemplary?

I have read some blog posts about care and some academic articles and books about care.  I am learning that attentiveness to the specific needs of the care recipient is a necessary part of good care. 

Many people struggle to describe how it feels to give physical care and physical help to complete personal activities.  What are care providers thinking as they provide this care?  How do they check how well they are doing their job?

I would love to hear more about what paid care providers think and feel.  If you are a paid care provider and/or a recipient of paid care, please share your ideas with me.  What does someone like me – someone who doesn’t currently need nor give this type of care – need to know? 

I suspect that there is often not enough training or time to do as good a job as both people in the care relationship would like.  If this is true, what needs to change and how?  How do both people in the care relationship cope with these constraints?

Sheila

Life changing advice

I love reading.  There are some novels that I have read that I will always remember.  The English Patient by Michael Ondaatje.  The Secrets of the Ya-Ya Sisterhood by Rebecca Wells.  Away by Jane Urquhart.  However, I’m not sure that I would say any of these books changed my life.

The Explosive Child by Ross Greene changed my life.  This is not going to be a book review.  However, I will highlight one aspect of this book.  This aspect changed my life.  The book is about children who have a low frustration for tolerance and whose reaction to frustration is extreme.  The children he describes often have one or more of a number of diagnoses such as Attention Deficit Hyperactivity Disorder and Oppositional Defiant Disorder.

I have an “explosive child”.  For 8 years, I struggled with guilt, anger, and despair.  I didn’t know how to parent my child.  There were sleepless nights while my child screamed and screamed.  There was the dread of extended family gatherings because I knew that my child would misbehave and I would be judged negatively.  There was embarrassment when strangers asked me how my ears could stand the loud and relentless screaming. 

There were also sleepless nights while I worried how my child would navigate adulthood.  I anticipated drug addiction and illegal activity.

Finally, I felt strong enough to withstand the “helpers” saying “You just have to be more consistent in your behaviour management.”  I started the process of asking for help and yes they did say that I needed to be a more consistent disciplinarian.

Luckily a number of factors led to my child having an EEG.  It was abnormal.  Yay!  Why Yay?  Yay because that led to us to seeing a neurologist.  My child demonstrated his/her worst behaviour during that visit so we got an emergency consultation with a psychiatrist.  She recommended I read The Explosive Child.

The aspect of The Explosive Child that changed my life was the suggestion to shift my perspective, my paradigm, my understanding of my child and the causes of my child’s behaviour.  Green asks the reader “Would you deny your child glasses saying “You just need to try harder to see.”?  He asks “Would you deny a child with cerebral palsy a walker saying “You just need to try harder to walk.”?  I wear glasses and I work with children who have cerebral palsy.  I answered No! 

Green then challenged me to change how I parent so that my child experiences less frustration.  He also challenged me to change my response to my child’s extremely negative behaviour when my child was frustrated.

It may sound simple and obvious and I guess it is.  But it wasn’t easy to do but boy oh boy was it effective.  My child is not an angelic teenager now.  However, I no longer worry about drug addiction and illegal activity.  It still isn’t easy to parent my child but it is easier.

I share this story because this blog is about inclusion of people with impairments in our communities and society.  My focus with my child shifted from changing my child to changing my child’s environment.  I believe that is what we must do in order to enable everyone to experience success, a sense of competence and a sense of belonging.  What do you believe?

What books have changed your life?

Sheila

Acceptance. No. Celebration

Español: (Original) Diversidad étnica de un co...

Español: (Original) Diversidad étnica de un colegio de Lima, distrito de Surco, Perú (Photo credit: Wikipedia)

I am repeating myself but I am going to write a bit about acceptance today.

There is such a thing as “Locked-in syndrome” in which a person feels trapped inside their immobile body. Once a way is found for that person to communicate, they often think and communicate in a way that most people think is “normal”. I do not know a lot about this syndrome so won’t add too much about this topic, today.

Unfortunately many people believe that “trapped inside” every disabled child is a “normal” child trying to get out. Before I continue, I will say that I believe that communication is important for most if not all humans. Working really, really hard to find a way for all people to communicate is valuable work.

However. There is always the however, it seems. However, I do not believe that there is a typically developing child “imprisoned” inside the disabled children with whom I work.

The children I serve are who they are with their impairments. I worry that it is insulting to them that we adults are always trying to assist these children to improve. As if they are not their perfect selves already.

I help my relatively “typical” daughters to improve their school, home, and community living skills. Sometimes children with impairments need more supports to do this. They deserve the extra help that may be required. I guess I become concerned when we “push” disabled children more than we push typically developing children.

I often use the analogy that for “John” to do that school work is like me attending a university level physics course. Or I liken “Sally” doing that activity to Sally participating in an Olympic sport.

There is daily acceptance for the fact that I can’t do university level physics or Olympic rowing. I am accepted for being an average woman living an average life.

Let’s accept disabled children as they are. Their bodies aren’t prisons for other children. They are who they are. They contribute their colours to the rainbow of humanity. Let’s support them to give. Let’s celebrate them and the rainbow of humanity.

Signed, Hokey Sheila

 

 

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