Tuesday, November 24, 2015


 In the disabled community it is common for  children who have been raised with no legal parent i.e. in foster care, group homes etc who have government workers being the deciders, grow to be adults with no one looking after the best interests.  There is the public guardian, the residential workers and day program staff that are involved but often times there is no one really invested in the person.  Quality of life depends on emotional attachments.  You can be clothed "appropriately", fed a balanced diet and have your healthcare tended to but if no one really cares that you are alive and present in their life then where is the joy and happiness that makes life worth living?

On one of my kid's bus is a young woman whom I have known since she was a feisty toddler. She shares the syndrome Cri du Chat as one of my daughters.  She was not an easy child by any stretch of the imagination.  Every negative behavioural characteristic the text books attributed to the chromosome deletion she demonstrated.  I have come into contact with her often over the years and I know she has mellowed.  Perhaps it was maturity or perhaps medication.  In the end her family found it all too much and secured alternate care for her in her early school years.  Unfortunately I believe it to be in group homes and that is where I know she resides today.

It is possible in the group home setting where E has been living she has staff that enjoy her and do more than meet her physical needs.  I really hope this is the case.  What has brought me to this post however is how long she is spending on the bus every day.  My observations have her on at least four hours each day, two in the morning, two in the afternoon.  It is likely she doesn't mind the ride, I don't know but for me that is not the point.  It just brings home to me the fact that for some folks with cognitive disabilities no one is looking out for them....I mean really looking out for them.  Does anybody care how long she is travelling the city no matter what the weather or road conditions?  Has anyone calculated the amount of time she is on the bus?

I know many would say it's not my business and maybe it's not.  Could be everyone is fully aware of E's bus times and have decided it is not a concern.  I think maybe this situation with E is just illustrating to me the fact of how so many in the disabled community really are on their own.  Surrounded by people but alone.

If you ever give pause to think of those who live heroic lives you need to remember the children and adults with cognitive disabilities who are dependent on others to meet their needs. The ones without family.  Not everyone in the caregiving profession is created equal.  Not everyone is in it for the right reason.

For the individual requiring assistance to live, make the best of things and maybe even thrive against all odds is an act of heroism every single day.

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