Sunday, June 25, 2017

we are here by your side this invisible army

although you have no path to follow
nor a map
you have begun to speak
and this is necessary to get the help you seek


although you face troubles and retribution
you must keep speaking
for this is all about changing the system
and this requires courage

although you have no experience in evolution
you have children who have taught you
all about love    and so in my opinion
you know everything worth knowing


although you are only one
we are here by your side      this invisible army 
we are many and our names are unknown to you
but we stand by your family


although you have heartbreak
and chaos as your companions
understand that we are working with you
to change the system


although this is now
and you can't see the future
I tell you that the work you do is essential
stand up for your family      we are here by your side      this invisible army 


https://www.youtube.com/watch?v=Ib02sktYMSA

Hands on a Grain of Sand - Amelia Curran

https://www.facebook.com/ateamdiary/?pnref=story
The a-team diary
25 mins
I realize that it is hard for people to understand why we just can't bring Robyn home. This type of autism doesn't make ch the images that even our own agencies and advocates portray. We tried believe me we did. We would like nothing better than to look around our house and see our family together happy and safe. But that is not the reality of the situation but besides that there are a few political and logistical reasons why that is not possible.
1. If we take Robyn home. We fill the gap of the ministries responsibility to provide care. Care on the 24/7 level that Robyn has become accustomed to and desperately needs. And this ranks her Lower on the priority list for residential placement.
2. The minute we placed Robyn in residential placement we were stripped of all of our local funding for her support in terms of ssah and respite services so I have no access to funds to support her in our home.
3. Robyn no longer associates our home as home. It is a trigger for behaviour, which breaks my heart.
I have thought many times of video taping her behaviour so that people can really see what self injury and aggression looks like. But I can't bring myself to invade her privacy in that way and out her out there in a public forum at her worst.
My daughter does very well when properly supported. And it is the greatest pain in my life to realize that I can't give her what she needs. But loving her as I do, I owe it to her to put my selfish need to want her with me to advocate for what truly improves her quality of life. And sadly that is not in our home. I miss her every day. And I understand that people don't understand but I would ask that you be kind in your comments as this has been the hardest part of our autism journey as a family.
Michelle, jesse , emma, max and of course my sweet Robyn.
This is a pic of Robyn today in her new temporary home the north bay regional health centre.

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Misplaced medical files delays autistic child's treatment

CBC News Posted: May 21, 2014 12:26 PM ET Last Updated: May 21, 2014 12:26 PM ET
North Bay's Michelle Webster says when she went to sign up her daughter for an intensive behaviour program, she was told Robyn's file wasn't in the system — including her diagnosis, psychological assessments, and genetic history.
North Bay's Michelle Webster says when she went to sign up her daughter for an intensive behaviour program, she was told Robyn's file wasn't in the system — including her diagnosis, psychological assessments, and genetic history. (Jesse Webster)
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A mother in North Bay says a ministry organization misplaced her autistic daughter's medical files, delaying an important treatment.
Michelle Webster thought her daughter's medical information was lost by the group providing her daughter's treatment. Three weeks later, Webster was told the information had simply been archived.
Webster said people are unaware of the difficulties families with autistic children have in obtaining services.
“Parents burn out from the system really easily. And this is one of the reasons why,” she said.
“It's because things that should be easy questions to ask and be answered, that agencies should know the answers to, are sometimes really difficult.”

Communication breakdown

Webster's 12-year-old daughter Robyn has severe autism and has limited verbal communication. Robyn was becoming violent and Webster needed immediate help.
She went to apply for an intensive behaviour program, offered locally through a provincially funded group called the Family Help Network — also known as Hands — but was told Robyn's file wasn't in the system. That file included Robyn's diagnosis, psychological assessments, and genetic history.
It was something they “definitely should have had because Robyn has been receiving services at Hands since she was two years old,” she said.
After three weeks of questions, Webster took to Facebook to voice her concerns.
That's when she was contacted by Jeffrey Hawkins, the group's executive director.
He told her the information she thought was lost had simply been archived.
“Clearly there was a communication breakdown by us. And that shouldn't have happened,’ Hawkins said.
Webster said she doesn't blame the organization, but is upset her daughter didn't get the treatment she desperately needed.
The executive director of the group said he's apologized for the mix-up and will ensure future employees know how to access the files.

VIDEO

North Bay mom blogs about daily life with kids on the autism spectrum

You get your diagnosis and no one ever tells you — Here, this is what you do next'

By Marina von Stackelberg, CBC News Posted: Apr 01, 2016 2:46 PM ET Last Updated: Apr 01, 2016 2:46 PM ET
Michelle Webster posed for a photo with her 14-year-old daughter Robyn, who has severe autism. “I really just wanted as many people having conversations about autism," Webster says about her daily video blogs.
Michelle Webster posed for a photo with her 14-year-old daughter Robyn, who has severe autism. “I really just wanted as many people having conversations about autism," Webster says about her daily video blogs. (Provided.)
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A North Bay mom is giving people a candid and personal look into life with two autistic children.
As part of World Autism Awareness Day on Saturday, Michelle Webster started posting video blogs on Facebook.
In the videos she talks about everything from dealing with meltdowns and difficult family functions, to showcasing the unique personalities and behaviours of her kids.
Two of Webster's three kids have autism. Her 10-year-old son Max has moderate to severe autism, while 14-year-old Robyn has severe autism and is unable to communicate using words.


"Sometimes I feel like the images and the messages that are put out there by some autism agencies and the media don't really reflect my kids," Webster told CBC News.
"I thought it was really the best way I could think of to promote awareness and education about what autism is really like to live with."
She said that having two kids on opposite sides of the autism spectrum gives her a unique perspective.

Support decreases as kids age, mother says

Webster said she welcomes $333 million in new funding for autism recently announced by the Ontario government, but she's concerned the money is primarily focused on children under the age of six.
She noted people often think of autism as a childhood disorder, when it isn't.
"What happens is your children grow, their services deplete, and their needs increase. And when you put all those dynamics together, it makes for a very scary place."


Webster said getting support is a constant struggle — and the effort has sometimes left her pleading with agencies for help.
A year ago, when Robyn was dealing with violent episodes, Webster ended up at her local Community Living begging for help.
"I was bawling. And I was angry. And I just spewed at them. And I said, 'you have to do something. And if you don't know what to do you have to find me someone that does so my family can survive this and so that Robyn can be safe'," she said.
"It's really unfortunate that things have to get to complete crisis."
Through her blog, Webster said she hopes to give people a personal take on her experiences, and give them a human face to a disorder that affects 1 in 68 people. Autism is now the fastest growing and most commonly diagnosed neurological disorder in Canada.
"I really just wanted as many people having conversations about autism this week and I think that it's been achieved."



No place in North Bay for severely autistic daughter

Friday, May 26, 2017 12:35:14 EDT AM
Robyn Webster, 15, remains at North Bay Regional Health Centre following a violent incident last week during which the teen harmed herself. Robyn's mother, Michelle, is upset Hands: The Family Help Network has terminated Robyn's spot from the family home she has been living in since January. Hands said it hopes to meet with the family this week to discuss possible options.
Submitted photo
Robyn Webster, 15, remains at North Bay Regional Health Centre following a violent incident last week during which the teen harmed herself. Robyn's mother, Michelle, is upset Hands: The Family Help Network has terminated Robyn's spot from the family home she has been living in since January. Hands said it hopes to meet with the family this week to discuss possible options. Submitted photo

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Michelle Webster has reached a breaking point.
“The stress has put me over the edge. I'm broken. I'm done,” she said Thursday afternoon from the North Bay Regional Health Centre.
Webster has been fighting on behalf of her daughter, Robyn.
Robyn, 15, was admitted to the hospital just over two weeks ago after punching herself in the face until she was black and blue.
“She's hitting herself because she wants to tell you she's hurting,” Webster said.
“This was bad, but I can tell you it has been much worse. The bruising has been so bad, I didn't recognize her. She was black, blue, yellow, purple and green.”
Robyn is nonverbal autistic. She was diagnosed with autism at about 18 months and started to self-harm by the age of 11.
Robyn has inflicted countless bruises to her face, sustained a broken nose and caused blindness in one eye from the blunt force of her fists to her face.
In January, Robyn was moved into a family home operated by Hands: The Family Help Network that offers 24-hour care for children with complex needs.
Webster said the family spent a year contemplating the move and  was assured staff were aware of Robyn's needs.
“She loves it there,” Webster said.
But a week ago Webster was notified her daughter's spot at the family home was being terminated because Robyn requires a greater degree of care.
Jeffrey Hawkins, executive director of Hands, said he intends to meet with family by the end of the week to review options for Robyn.
“The family needs to be part of the discussion,” he said Thursday. “There are options for Robyn. However, they're not local, they're not in the North Bay community.”
Hawkins said Hands is trying to find them as close as possible, but it looks like they are 90 minutes to two hours away.
“We're working with our community partners. Unfortunately, there is nothing in this area for Robyn.
“This is a very unique circumstance,” he said.
Webster said as of Thursday afternoon she still had no idea what that means or what options Robyn has left.
“They (Hands) assured us they were up for this challenge. They told us they could deal with Robyn and they wouldn't leave her,” she said. “We told them when we were discussing the idea of moving Robyn into (the family home) that if they couldn't handle her needs to let us know, because it would be more harmful to move her in and out of facilities.”
Robyn has been moved from the hospital's critical care unit to the paediatric ward. It's unknown how long she will remain in hospital.
“There's no place for her to go,” Webster said. “They have abandoned us. I just hope Hands is using this time to come up with a crisis response for Robyn.”
Webster said it's becoming more difficult to see her daughter in the hospital.
“She uses her iPad and eye movements. She looks at me and starts to cry and says 'car.'
“I know she wants to get out of the hospital. There's no reason for Robyn to be living in the hospital.”
Webster said the hospital has been the family's saving grace and a champion for the family.
She said she's been assured Robyn will not be discharged with no place to go.
“I would have preferred to be working with Hands, but they're not picking up the telephone,” Webster said. “They're not talking to us.”



AUDIO

'It felt cruel': Family seeking solution for nonverbal, autistic, self-harming teen

WARNING: This story contains disturbing details and images

By Olivia Stefanovich, CBC News Posted: May 23, 2017 5:06 AM ET Last Updated: May 23, 2017 4:38 PM ET
Robyn Webster, 15, is nonverbal and has severe autism. She was recently admitted to hospital because of self-harm.
Robyn Webster, 15, is nonverbal and has severe autism. She was recently admitted to hospital because of self-harm. (Michelle Webster/Supplied)
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Photo of Olivia Stefanovich
Olivia Stefanovich
Olivia Stefanovich is a CBC journalist based in Sudbury, Ont. She covers a wide range of topics for radio, TV and online. Connect with her on Twitter @CBCOlivia. Send story ideas to olivia.stefanovich@cbc.ca.

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Morning North
Nowhere to go for North Bay family's severely autistic daughter
LISTEN
09:55
A northern Ontario family is desperately searching for help after being told their severely autistic, nonverbal teenage daughter will not be able to return to her community care residence because of self-injurious behaviour.
Robyn Webster, 15, recently hurt herself so badly that she ended up in hospital.
"As her mom, I can't even put into words what it's like to look at your child hitting herself in the face," Robyn's mother Michelle said.
"Swelling, bruising, breaking her nose multiple times. Knowing that she desperately needs something and wants something, and with no way to help her it's the worst kind of helplessness ever."
Robyn was receiving 24 hour support at a residence in North Bay, Ont., run by Hands: The Family Help Network through a one year financial grant of $181,804 from the Ontario government.
Jesse and Michelle Webster
Robyn Webster's parents, Jesse and Michelle, are trying to find a long-term care solution to suit her needs. (Olivia Stefanovich/CBC)
Robyn began to transition into the facility last June, but only moved in on a full-time basis last December.
Five months later, The Family Help Network began the process of terminating Robyn's placement on May 15 because the administration said she needs a higher level of service.

'Incredibly shocked'

"It felt cruel," Michelle said.
"We are incredibly shocked to hear that that was the approach they were taking upon the first time that she ran into crisis when we had done our best to advise them that this was most likely going to come their way."
Robyn Webster
Robyn Webster lost her vision in her right eye due to self-injury, according to her mom Michelle. (Michelle Webster/Supplied)
Robyn was diagnosed with autism at 18 months, according to Michelle, and started to self-harm when she turned 11.
Robyn lost her vision in her right eye due to self-injury, and can at times become aggressive towards others.
"[It's] very much like being on the inside of an abusive family," Michelle said.
"It's out of context because it's a child against parents, but in essence that's what my other children are watching. They're watching their sibling very seriously hurting their parent. They're watching their parent engage in physical confrontation with one of their siblings. It is not mentally healthy."

'No way to keep our family safe'

The Websters said they cannot let Robyn live at their home anymore.
"There was no way to keep our family safe," Michelle said.
"It was leading to the breakdown of our family. A breakdown of our marriage ... We are desperate to keep our family together."
Robyn Webster
Robyn Webster's family wants her to receive treatment close to their home in North Bay, Ont. (Michelle Webster/Supplied)
Hands was also challenged by Robyn's condition and that is why the organization is recommending that she seek other support for her "high intensity" needs, according to Hands executive director Jeffrey Hawkins.
"We've worked our darndest," Hawkins said.
"We're disappointed and we're sorry that new circumstances evolved."
It is not clear if there is a setting available in North Bay to support Robyn's needs, according to Hawkins, but he said his health network will be working with the family on a transition plan.

Family help network 'not abandoning' Robyn

"We're not abandoning, but we're putting the interests of the child and youth at the forefront, and we're staying the course," Hawkins said.
"As long as they [Robyn's family] want us to be part of it, we're prepared to be there."
The provincial funding that was given to Robyn will either follow her to another facility or be returned to the government, according to Hawkins.
Jeffrey Hawkins
Jeffrey Hawkins is the executive director of Hands: The Family Health Network in North Bay, Ont. (Joel Ashak/Radio-Canada)
"My sadness comes from the fact that for some reason it seems justifiable to withdraw care based on level of need," Michelle said.
"We define our society by how we treat our most vulnerable. If that's any definition of the kind of value we place in people like Robyn, than I am really, really sad."
Agencies that work with children on the autism spectrum are stretched to their limits, according to France Gelinas who is Ontario NDP health critic and Nickel Belt MPP.
"Those children fall basically through all the cracks possible," Gelinas said.
"Their parents become responsible for those kids and most of the time it ends up with finding a home far away, always in southern Ontario ... I don't understand. We have so many of them having to go down south, why don't we build those resources up here?"

Autism assistance lacking: MPP

The provincial government recently announced an overhaul to Ontario's autism program that will allow people to choose between government-funded services or receiving funding to pay for private therapy, but Gelinas said she still feels families in rural, northern areas will be "shortchanged."
France Gelinas
France Gelinas, Nickel Belt MPP. (Joel Ashak/Radio-Canada)
"Between what was announced and what's actually being rolled out and what we can see on the ground, there's a big gap between the two," Gelinas said.
"We owe it to every child to give them a chance to achieve their full potential and I know that the children up north that have high needs are not getting that."
If possible, Michelle would like to keep Robyn near her home in North Bay, as she is not convinced the services in southern Ontario are much better.

'This is so much bigger'

"I've spent 15 years advocating for my daughter and collecting this great community of people who are willing to fight for her," Michelle said.
"If she's living outside of North Bay, I have to start that process all over again."
Michelle Webster and Robyn Webster
Michelle Webster and her daughter Robyn in happier times. (Michelle Webster/Supplied)
Michelle blogs about her journey with Robyn on Facebook.
She worries about what services will be in place in the future for people who have conditions like her daughter's.
"There may not be a happy ending to our story, but this is so much bigger," Michelle said.

"The statistics for kids with autism are one in 68 now. One in 68. So how does that play out when these kids get older? It's not going away. It's only going to get worse ... There will always be the Robyns in this world. There will always be people that need that level of care."

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