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.
These are the stories of us. These are the anecdotes of our days. This is the good bad and ugly (mostly good) of our not so unique, large (but not as large as some) family, living life to the fullest. Some of us might not have the average number of years generally allotted but we will fill each of those years with the celebration of family, friends and life
Tuesday, November 24, 2015
Monday, November 23, 2015
In a weak moment we got another cat. When I say moment I mean I thought about it for a long while then made the move.
There have been days when I wondered if I had made a mistake. Three cats really does put you on the path to a reputation of crazy cat lady.
If you ask the second cat she will tell you three cats are too many. She hissed, spit, jumped and pouted for a week. Though she has forgiven cat number three for existing she has not forgiven the one who loved her best before he came along. The teenager continues to get growled at when she picks her beloved up.
Three cats use a lot of litter. They lose a lot of hair.
There will be No. More. Cats.
No really.
But I guess number three was worth it.
Friday, November 13, 2015
Wednesday, November 11, 2015
"Wow you're all poppied out" says the teen
I thought she just noticed I had once again had to buy another poppy as the 100th one had fallen off like its predecessors
"Another one fell off" I said
"You're wearing two" she says gesturing to both poppies on my jacket.
Turns out I couldn't see the original poppy as my chins were in the way.
My flubber, the veterans gain.
Grateful for the senior members of my family who served their country and thankfully did not lose their lives doing so.
Lest we forget those that did.
Tuesday, November 10, 2015
11-year-old girl shames ‘One Million Moms’ for attack on her gay dads: ‘This is none of your business’
11-year-old girl shames ‘One Million Moms’ for attack on her gay dads: ‘This is none of your business’
Mic drop "it's none of their business.
For the love of God people get your heads out of other people's families.
Apply to foster. Apply to adopt. If you cannot do either of these things then support those that do. This whole world is a village. We need to take care of each other and we all need to be raising the children. Kids should not be held hostage in foster care or orphanages.
Put down your red Starbucks cup and contribute in a positive way to the community you live in.
Mic drop "it's none of their business.
For the love of God people get your heads out of other people's families.
Apply to foster. Apply to adopt. If you cannot do either of these things then support those that do. This whole world is a village. We need to take care of each other and we all need to be raising the children. Kids should not be held hostage in foster care or orphanages.
Put down your red Starbucks cup and contribute in a positive way to the community you live in.
Sunday, November 8, 2015
The weather has continued to be beautiful. It only now has turned more seasonal with small amounts of snow making an appearance. It has been wonderful to be spending more time outside.
In September we once again participated in a walk and wheel challenge in support of our provincial association for people with cerebral palsy. Always a good time. There's catching up with friends, a barbecue, prizes and all for a great cause. I even loved the colour of shirts this year as it matched the whole fall theme ;). Info love it when things match...
Friday, November 6, 2015
Points of interest
Points of interest
A pizza slice bought at a gas station will taste like pizza bought at a gas station.
Three cats shed A. LOT
If you organize yourself including taking yourself out of your pyjamas and putting on bra and lashes
for a meeting at your home said meeting will be cancelled.
Cancelled meetings are the best kind of meeting to have except it will have to be rescheduled thus making you repeat the process.
When your grown, tall nonverbal children who are developmentally toddlers misbehave on their buses or in their programs it is expected that you will "talk to them" and fix the problem.
Often times the good intentions to clean storage closets and cupboard are just that....good intentions.
There are people whom for years you will believe to be your close friend will use you for what they can get from you and then for reasons only known to them will attempt to destroy your credibility and reputation within a shared community.
I am very naive.
Rememberance Day and decorating for Christmas are two unrelated things. Not decorating before
November 11 does not make a person more respectful of those who have lost or dedicated their lives to serve their country than those who do decorate.
Grief is a way of life and exists every single day when your child dies.
Grief is probably the same for those who lose anyone integral in their lives.
Grief is stupid.
Kids dying is stupid.
A pizza slice bought at a gas station will taste like pizza bought at a gas station.
Three cats shed A. LOT
If you organize yourself including taking yourself out of your pyjamas and putting on bra and lashes
for a meeting at your home said meeting will be cancelled.
Cancelled meetings are the best kind of meeting to have except it will have to be rescheduled thus making you repeat the process.
When your grown, tall nonverbal children who are developmentally toddlers misbehave on their buses or in their programs it is expected that you will "talk to them" and fix the problem.
Often times the good intentions to clean storage closets and cupboard are just that....good intentions.
There are people whom for years you will believe to be your close friend will use you for what they can get from you and then for reasons only known to them will attempt to destroy your credibility and reputation within a shared community.
I am very naive.
Rememberance Day and decorating for Christmas are two unrelated things. Not decorating before
November 11 does not make a person more respectful of those who have lost or dedicated their lives to serve their country than those who do decorate.
Grief is a way of life and exists every single day when your child dies.
Grief is probably the same for those who lose anyone integral in their lives.
Grief is stupid.
Kids dying is stupid.
Wednesday, November 4, 2015
Tuesday, November 3, 2015
Subscribe to:
Posts (Atom)