WAVERLEY: Parents of an autistic child in Waverley say they’re frustrated with having no help to deal with their son’s outbursts, and are going public as a result.
Shannon Mosher and Andrew Mader say they have gone for help everywhere they possibly could, and all they’ve been given is parent training and nothing more.
“I felt confident in our health-care system when he was first diagnosed, that we would get Ethan in for speech therapy minimum three days a week,” said Mosher. “What we got was parent training. We learned how to be speech therapists.”
She said he did get some time with N.S. Hearing and Speech once a month when he was two or three, and was in the EIBI Program when he was five-years-old. Ethan helped develop the program, becoming the first child to use an iPad to speak.
“They weren’t using the iPad until Ethan joined the program,” said Mader.
It was great, but for Ethan it was just nine months long and each week saw the time he had it decrease until it came to an end.
“It was great while he was in it, they taught him some stuff,” said Mosher. “I imagine if it was in his life longer through his childhood, he would be in a totally different place right now. It’s overwhelming to see the benefits of it, but that my kid doesn’t get it.”
Having spent 10 years with no help for their situation has left them tired and frustrated, with nowhere to turn.
“We’ve been fighting for the fence; the service dog; his speech therapy,” said Mosher. “We just want help with one thing. One thing that will help make our lives easier. He’s so severe.”
Both parents are unable to work so they can be home to care for Ethan, and his two sisters, and because of health issues.
Mosher said the Department of Community Services Disability Support for Children is willing to give the family a little bit of money for respite, so the two can go out for an evening. But that’s not what she wants.
“I want Ethan to get better, because I’ve proven the more you work with him, talk to him, and give him some bio-medical interventions he has gains,” she said.
She was told he would be diapers his whole life; he isn’t. She was told he would never speak, Ethan has been saying ‘mom’ and he has completely transitioned off his iPad for speech. It was suggested he get more speech therapy; PRT; ABA; occupational therapy; and emotional therapy.
“I feel if he had what was recommended, which equals to about $80-100,000 a year, he’d be better off, but our kid isn’t getting any of those things,”she said. “I’m trying to help him the best I can, but I can’t do it all. I’ve taken him in to the IWK and it seems like nobody cares.”
The Mosher-Mader family said they have reached out and had meetings with MLA Bill Horne twice; and Autism Nova Scotia, among others. While Horne suggested the GoFundMe fundraiser, that’s all the help he could provide them and Autism N.S. has not called back to direct them to relevant resources to assist them.
As Ethan is a flight risk of running away, the family has setup a GoFundMe to raise funds to have a fence built around their Rolling Hills Drive property.
“We just would like him to be able to play outside without us being his bodyguard 24/7,” said Mosher. “He has tried to escape before so it would be nice to have that buffer that if he did get out he could not leave the property.
“It’s one less thing that would help to make our lives so much better as it’s a struggle daily.”
Mader said they’re just trying to have Ethan feel like he’s a kid.
“We’re just trying to be able to give him a chance to play outside in a safe, fenced-in environment,” he said.
To donate to the fence fundraiser, check out their GoFundMe page by searching for “Ethan’s funds for autism services.”
In the future they are hopeful of having Ethan screened for environmental illness; speech therapy offered; and even a service dog trained to assist Ethan.