A perspective on the world of disability from a mother and an educator. Follow my blog!

Wednesday, 25 September 2013

Independence


Since becoming a parent seven and a half years ago, I would often look at my childless brother and be slightly jealous of his carefree lifestyle: the weekend sleep ins till midday, going out to the movies regularly, walking into family functions with nothing but his keys in his hand, being able to watch a tv show of his choosing. I would sigh for that lost lifestyle, the freedom, the independence, then look at my girls and remember all that I had gained, not lost.

The idea of independence though is one that has been mentioned to me again and again recently. I think it is a concept not fully understood by those not marginalised by a disability and is more often than not taken for granted. A number of teachers I have been speaking to have expressed (I won’t say complained of) their frustration at the amount of one-on-one time students with a disability require, particularly those with an intellectual impairment.

My first reaction is incredulity. “This is my life!’ I shout at them in my head. As a parent of someone with an intellectual impairment I live this ‘one-on-one’ support 24-7. I don’t get to go home at the end of the working day, back to my independent life. I live a life where someone is completely dependent on me and will likely remain that way is some form or another. There’s no respite, no escape, no end point, no knock off time where parents or carers can just end their working day and down tools. I get disheartened when those who have chosen to help and guide children put some of them in the too-hard basket because their ability to be independent is limited.

I wonder if these teachers stop to consider what that ‘one-on-one’ support means when the child goes home. For many parents and carers in becomes like a split personality. You no longer keep track of the needs of just one person, but two. I don’t mean in the simple way a parent looks out for a child or considers their well-being. I mean an intensely intimate knowledge of another person’s needs, long-term, short-term, immediate. Toilet training is hard for almost every parent, but imagine having to be that intensely aware of another human being’s bodily functions and needs, always.

What they eat, how much they eat, is their body functioning well, have they had their medication, how is their coordination and muscle strength, is their mobility hindered in any way, are they tried mentally, are they tired physically? So many questions to be constantly asking about another human being. Imagine having to think about the physiological needs of two people (yourself and another), but now add in the fact that you have to stop and think about their thinking patterns, trying to understand how they are experiencing a situation in order to help them negotiate it. On top of this, add in that you need to think about their safety, their happiness, their treatment by society. As I travel during these school holidays I can promise you I don’t get to finish that one-on-one support at 3pm every day.

Just yesterday I watched a documentary on how adults with various disabilities negotiate having a sex life. In some instances parents needed to be responsible for the sexual well-being of their children. That takes looking after another’s physiological needs to a whole new level. You can understand why I get frustrated at the teacher who gets bothered by the intense level of support needed in a classroom for the duration of a double lesson.

As educators we need to be doing what we can to help every student achieve independence. We want them all to be productive members of society. Eventually the students with disabilities we teach will be the people helping us at Target, or serving us our coffee, or working in admin with us… or thanks to the lack of effort put in by their educators they could be on welfare limited in their ability to be independent because they were not supported to. I came across the interesting fact a few years ago that every $1 spent in the early intervention of a child with a disability saves $6  for the rest of their life. Imagine if we translated that to time. Maybe every minute spent in patience now could save us six minutes down the track. We could just sit back and moan about how students with disabilities are a drain on our time in the classroom, or we can do something to give them the independence they so rightly deserve.

Friday, 6 September 2013

Comorbidity

Though Simon and Garfunkel would have us believe we can be an island, or a rock, it simply isn't true. It's even less true for those living a minority or marginalised life. In some way or other, we all live with comorbidity, that is two or more diagnoses along side each other. I'm being quite liberal here and using the medical term with a bit of poetic licence.

In my case, we have a literal comorbidity of Down syndrome and Graves' disease. We need to keep in mind which is responsible for the symptoms that impact daily. Metaphorically though, we have comorbidity with her youth, no family in town to support us and limited medical/therapy services in our town. We are not an island, isolated from the people and services around us. We have many blessings included in our medical and social diagnosis, wonderful friends, supportive school and understanding employers. All of these things contribute to the degree of marginalisation we experience.More of one, less of another and it can drastically alter the path we walk.

I recently, and randomly met a mother who was beginning her journey through getting a diagnosis for her young son. It was nice to be able to offer some comfort as she went through the initial stages of grief and then took up the torch to fight for her boy. While her son didn't end up with a dual medical diagnosis, she experienced comorbidity with no support, friends or family in town. Even her husband worked away. She was having a tough time with her son's kindy teacher.

Her story is an example of how we all bring our own prior experience/baggage to this wonderful journey of disability. Each of us travels a unique path. Even members of the same family will experience their own comorbidity. How my daughter's experience their sister's disability will be very different to how I experience it. My brother is a wonderful advocate in the public sector, though his experience of disability of the ground floor is limited. I'm sure many people think that because I'm a Special Needs Coordinator that I have most, if not all, the answers for my daughter. Truth is, I still grieve, I worry, but I rejoice too. She did her first class performance this week. Spider in the Shower will be off to West End I'm sure! (On a side note while Imogen may not be the best reader in the class, she could easily have been the understudy for all the kids in the class as she knew EVERYONE'S lines!). Ultimately we are neither islands or rocks, but all threads of this social fabric.

With the 2013 Australian election looming tomorrow, we all have a chance to impact on our own personal comorbidity. I won't be using this forum to sway you to vote one way or another. Your vote needs to represent you and your circumstance. It is a chance for us to perhaps lessen the metaphorical social comorbities we live with, and perhaps improve the medical comorbidities as well. Make it count.



If the politicians can post selfies, I can add one of Imogen's MANY selfies!