When Waiting Is The Only Option by Chelsea Scherer

When Sheila Ims heard the news that something was wrong with her daughter, she wasn't surprised.

"I'm not naive," Sheila told her sister Susan on the phone. "Just say it."

Susan’s son had overheard that Sheila’s daughter Chelsea, had been using

methamphetamine, amongst other hard drugs. Once word got out, the son was recommended by police officers that someone inform Sheila, so Susan made the call.

But the panic Sheila felt wasn't over the news of her daughter’s drug use it was the realization that Chelsea's daughter was now living in an unsafe environment.

Sheila knew she had to remove her granddaughter Abbygial, then, a three-year-old child from the possession of her 28-year-old daughter Chelsea.

"Immediately, I got on the phone and called Family and Children Services," says Sheila.

But after being forwarded to an answering machine, she was forced to leave a message. Sheila could feel the panic creeping up on her. It was the Thanksgiving long-weekend and she knew she wouldn't be able to reach a social worker until Monday at the earliest.

When Monday came, Sheila was told by a social worker at The Family and Children Services of Waterloo Region that they would visit Chelsea but it would take them between 10 to 12 days before they could.

Frustrated, Sheila met with her family doctor to see if they could help. Immediately, the doctor called the social worker, and just like that, the 10 to 12 day wait had disappeared. But the few times social workers appeared at Chelsea's place, she didn’t answer the door. Sheila suspects Chelsea was pretending she wasn't home to defer the social workers.

But Sheila kept pushing and pushing for the social worker to go back. After making no progress, Sheila had to do what any protective mother would do: take the child herself.

Sheila and her common law husband Harold – who goes by Butch – decided they’d bring Abby camping with them. Sheila offered to give her daughter a break while they take Abby with them for a week, Chelsea agreed, and off they went.

But before they left, Sheila made one last phone call to Family and Children Services.

When Waiting Is The Only Option by Chelsea Scherer

"I have no intention of bringing this child back," Sheila told the social worker. "And when I come home, I will have expected that you have had the ball rolling somehow, somewhere."

Abby, now five, is like most children her age. She adores her dog and two cats, playing games on her iPad and eating popsicles.

The only contrast from a typical child is that Abby is autistic, and non-verbal – for the most part.

Abby communicates by using various sign language, head nodding and pointing when she wants to tell you something.

Aside from being disinterested in playing and interacting with other children, Abby is very affectionate. Sheila says that a lot of autistic children don't show obvious affection on a day-to-day basis.

When Abby was born, she only weighed merely four pounds and nine ounces. And because she was so small, the doctors fed her using a gastrostomy tube, which directed formula straight to her stomach. Abby was on this G-tube for a week before she gained some weight and was eating enough orally.

At three months old, Chelsea began to notice odd behaviour from Abby. “She would never really look you in the eyes,” she says. “She had seizure-like movements and would flex her feet when she got overly excited.”

Chelsea, twenty-three at the time, did research online before confronting her doctor about the behaviour. After years of not getting an answer, Abby was finally diagnosed as autistic on her third birthday. But this was a year after she came to live with Sheila.

Abby enjoying herself while on vacation last summer. Photo courtesy of Sheila Ims.

When Waiting Is The Only Option by Chelsea Scherer

With Abby currently in kindergarten at Bridgeport public school in Waterloo, Ontario, Sheila is concerned that she isn't getting enough.

Although it's not mandatory for children to attend junior or senior kindergarten, it's recommended. That way they can learn from other children their age and work on their social skills – which is something Abby is in therapy for.

During junior kindergarten registration two years ago, Sheila applied to have Abby accepted in the KidsAbility junior kindergarten, but was not accepted.

KidsAbility is an organization accountable to the Ontario Ministry of Children and Youth Services to provide rehabilitation services for children with disabilities and other developmental issues. Between the Waterloo Region and the Guelph-Wellington area, KidsAbility is one of the best programs for children in need.

This is why their waitlist sits at about 900 families waiting for their child to get into one of their specialized programs. And with the Minister of Children and Youth Services announcing additional funding in August 2014 to shorten the list by 100 children this year, it won't matter for the Ims family.

Abby was on their waitlist for two years before she was removed for "aging-out". This is because any child who surpasses the age of junior kindergarten – or four years of age – is considered too mature to receive therapy at KidsAbilty.

"You think they would want to accept you and help you," says Sheila. "When you're turned down, there's no answer as to why."

From September 2014 to April 2015 KidsAbility assisted in the development of about 5,800 children. Parents won’t be able to see if the additional funding was able to remove 100 children from the waitlist until the KidsAbility fiscal report is released in June.

At Abby's school, they bring in an occupational therapist and speech therapist but they don't actually work with the children. Instead, they consult the school on how to handle and provide for children with disorders. And each school in the Waterloo Region District School Board is only allocated a maximum of six part-time educational assistants (EA). But it’s more about where the need for their services is. Heather Preddie, the principal at Bridgeport public school estimates that they have five autistic children at their school but says that a school could always use more EA’s.

With grade one coming up in September, Sheila wants to put Abby in a classroom with typical students so she’ll have the opportunity to socialize. But it may not be an option due to the lack of EA’s.

When Waiting Is The Only Option by Chelsea Scherer

Instead Preddie says that when students with similar needs are together they will receive the attention they need.

But Sheila feels that if Abby was in a separate class with other special needs children, she could pick up their habits. This year, Sheila was told that Bridgeport public school might not have an EA for Abby next year if she wanted to put her into an integrated class.

"I'm frightened that she wont have the opportunity to academically move forward," says Sheila. "I don't want to deprive her of that because we don't know what her limits are."

She feels that if you don't have a "typical child" you're not given many options. And that's only one of the roadblocks Abby is up against. Sheila and Butch are tired. Currently in their late forties, they've had to put aside everything to become parents again to a young child.

They were granted $4,800 for the year to cover respite care, babysitting and recreational activities like summer camp. But none of the funding can be used for therapy.

Sheila spends $43 dollars an hour for therapy and in passing, she's heard that some parents pay up to $150 dollars an hour. This is not a cheap investment. Especially when you've already invested money into other endeavors and have had to put them on hold in order to provide for a child.

Prior to taking Abby on, Sheila and Butch had plans renovate properties to sell them. Due to the fact that they had already invested in property, they've had to put their projects on hold until they can figure out their family situation first.

"The therapy is what kills you," says Sheila. "And I don't know what funding there is out there."

Sheila and Butch were making enough money when Abby came to live with them, so they weren't given subsidies for therapy. And when a family has a child with special needs, whether you decide to go to therapy or not, is not an option. If you choose not to, you risk not knowing the highest potential your child has.

Sheila has had to take a lot of time off work to attend therapy sessions with Abby and is lucky that her current job allows for her to do that. At her previous job though, they didn't allow it and she was let go for missing so much work.

Ironically, Sheila works for a private company that applies for government grants for people. More specifically, large companies and farmers who want to save on energy.

When Waiting Is The Only Option by Chelsea Scherer

Right now, Abby attends Bridgeport public school all day and then stays for the after school program until Sheila picks her up. On Friday mornings (and for the full day when Sheila can afford it) Abby goes to Applied Behavioural Analysis (ABA) therapy through Kerry's Place Autism Services.

It's on Friday's where she is involved in a social skills group in the morning along with four other children and a one-on-one therapy session in the afternoon.

In the social skills group they play games that help the children become more mentally flexible. This means changing their routine, for example, by having them complete a task and then changing the instructions part way through to have them adapt. This exercise is particularly good for Abby because routines are almost mandatory for autistic children.

During the one-on-one session, Abby works on her articulation and identification skills. Her therapist has her identify various animals and objects while trying to get Abby to say the words.

“It increases her vocabulary by learning about the things in the world around her,” says Freya Hunter, Abby’s therapist.

But the therapy is not always easy. The therapists often try to challenge Abby to battle her setbacks.

“She doesn’t like writing [because] she finds it difficult,” says Hunter. “She also struggles with playing with other children as well.”

Aside from receiving some therapy through Kerry’s Place, Abby’s still on the waitlist for Intensive Behavioural Intervention (IBI) therapy at ErinoakKids. Being on their waitlist since 2012 and the Proloquo2Go app and iPad for speech therapy waitlist over the past year, at times it seems like being accepted will take an eternity. Especially, when once Abby is done her year at Kerry’s Place, she’ll go back to the bottom of the waitlist for the next level.

"There's a waitlist for everything," says Sheila.

Sheila attends autism information sessions every couple of weeks to make sure she's aware of programs and services available for Abby. But that's not the only reason why she needs to go. If you don't attend an info session for a program you're on the waitlist for, you lose your spot.

When Waiting Is The Only Option by Chelsea Scherer

Abby has a fixation with turning light switches off.

Sheila thinks it's because it's something she can control. She will tell Abby, "lights out" when she reaches to flick the switch so that it's implied that turning off the light was Sheila's idea, and not Abby's.

This is one of the types of home therapy methods Sheila uses to help with Abby's behaviour.

"Structure is key," says Sheila. "Especially with autistic children."

On warmer winter weekends, Sheila likes to take Abby on her

snow sled through the trails near their home. But it's more about the fresh air rather than the snow. Abby isn't interested in playing in the snow much, like most kids her age she prefers to stay indoors.

"She's addicted to books," says Sheila. "I believe she can read."

When she sits down to read a book to Abby, if Sheila doesn't read the words correctly, Abby will point her finger to the word and wait until Sheila reads it before they move on.

Abby was a different child when she was living with her mother, than she is today with Sheila and Butch. When she came to live with them, she was still eating mushy baby foods and was very delayed. Since Sheila and Chelsea never really had a close mother-daughter relationship, Sheila didn't know Abby was autistic until she came to live with them. In the past, every time Sheila and Chelsea would get into an argument, they wouldn't see Abby for at least a month.

On top of autistic children tending to be more agitated and frustrated easily, Abby was also self-harming. She would bang her head on the floor, punch herself and scream. Sheila would often have to hold her hands down to try and calm her down. Even in her first year of kindergarten, Abby was removed from the class for her outbursts.

"She still has the occasional outburst," says Butch. "But they last about two minutes, whereas they used to last an hour."

Sheila and Abby fishing last summer. Photo courtesy of Sheila Ims.

When Waiting Is The Only Option by Chelsea Scherer

Thinking that it was her teeth coming in or that she was cranky, they soon realized that her lifestyle beforehand was almost purely nocturnal, as she slept all day and was up all night.

"I was terrible, all she did was scream and cry," says Butch. "You couldn't rationalize with her. You just had to let her go."

When they first brought her camping, Sheila and Butch spend the entire week trying to reverse her sleep schedule.

"We didn't really know what to expect," says Butch. "You don't think a child that is three can be that emotional."

It lasted nine days until they could finally get her onto a more regular schedule. Upon their return home, Sheila saw that they had received messages from Abby's biological father, Adam. He hadn't seen Abby in over a year and Sheila knew it wasn't going to be something good.

The message said that he knew Abby was with them and that he was coming to town with his friends to get her. After listening to what Sheila portrayed as a threat, she called Family and Children Services to tell them what had happened. Turns out, Adam had called the police and was advised by them to contact Family and Children Services as well.

Due to the phone message being viewed as a threat, the social workers put a protection on Abby from her father. When he told them he only wanted visitation rights, the social workers granted him four accompanied visits with his daughter. But after booking nearly a dozen appointments, he only attended two.

And it only took one visit with Abby to throw her off.

Upon Adam's first visit, Abby didn't want to be affectionate towards him. When she came home that night, the seven months it took them to get her to sleep normally, were erased. Abby was back to more sleepless nights.

When Adam decided that he wanted full custody of Abby, Sheila knew this was a battle she couldn't lose.

He was required to present a plan to the judge as to how he would care for his daughter. But after many lengthy and tedious court dates, Chelsea's lawyer told Sheila to write down everything she knew about Adam.

Abby on vacation last summer. Photo courtesy of Sheila Ims.

When Waiting Is The Only Option by Chelsea Scherer

Sheila went home and wrote pages about his anger issues and how he abused Chelsea when they were together.

The next time they were in court in December 2014, Adam didn't show. He called the courthouse saying that his car broke down and that he was in London. The judge, fed up, told the lawyers that if Adam didn't come to their next court date in January, he would be overruled.

Days before their January court date, Sheila received an email from her social worker saying that they had received

notice that Adam's fiancé had split from him because he had abused her and that she no longer supports him.

On January 13, Sheila, Chelsea and their lawyers were sitting in the courtroom and then the back door opened – previously Adam had shown up late for these things and they let him he heard – everyone turned around, and it wasn't him. The judge declared Sheila and Butch the legal guardians of Abby.

"I was so relieved and teary eyed," says Sheila. "My daughter was happy too because she knew her ship had sailed."

After a nerve-wracking two years of court dates, Sheila still to this day locks her doors. She says she never knows when Adam might show up, but she suspects he will someday.

To this day, Abby still gets emotional after seeing her mother a couple times throughout the week. Sheila believes that the withdrawal from spending so much time together plays a big role.

But with Chelsea visiting every couple of weekends, she has to

Sheila says Abby loves horses. Photo courtesy of Sheila Ims.

Chelsea holding a picture of her and Abby when she was only a few weeks old. Photo courtesy of

Chelsea.

When Waiting Is The Only Option by Chelsea Scherer

keep something from Abby: her nine-month old son, Dominic.

Chelsea and her boyfriend, who she's been with since Abby was born, gave birth to Dominic last July. But Sheila doesn't want Abby to meet her new stepbrother because she doesn't know how she'll react to seeing another child get attention from her mother.

She's worried that if Chelsea brings her baby and then leaves, leaving Abby behind, she won't be able to cope with it. This is why Sheila hasn't had a lot of interaction with her new grandson.

"I'm not prepared to start bringing this other child into my home," she says. "It's difficult because it's another grandchild but I don't have a role in that grandchild's life."

But there are plans in the works for Abby and Dominic to meet. Chelsea wants to bring her son and a friend of hers to help neutralize the situation so that Abby can meet her stepbrother without the pressure of feeling like this other child stole her mother.

Since Sheila had Chelsea when she was 18-years-old, they've never had a very close relationship. Sheila was always the mother trying to instill values, and Chelsea wasn't that interested. But aside from the arguing between them, Sheila still kept an open line of communication with Chelsea to make sure she knew what she was up to.

"She couldn't lie to me," she says.

Even Sheila knew that when Chelsea was given a year to "get clean" from the drugs, which included a three-month detox and rehab program, it would be a challenge. Chelsea did struggle and in the end, wasn't able to do it.

“You can’t give someone a time limit to get better,” says Chelsea. “They don’t understand someone who’s an addict.”

Chelsea says she was addicted to prescription painkillers while casually using heroine. Despite that Sheila was told that her daughter was frequently using crystal meth, Chelsea says it was only occasional. And Chelsea says she was prescribed painkillers while working as a pharmacy assistant when a workplace accident occurred.

But aside from the rehab and petty theft crimes she’s convicted of, Chelsea still wants Abby back.

“If I had the ability to afford and get to her appointments, I’d love to have her back,” she says.

When Waiting Is The Only Option by Chelsea Scherer

But now, Sheila thinks that Abby may see them as parents. Abby loves to climb into bed beside them occasionally and kick Sheila out so that she can cuddle with Butch.

"He's a blessing because not every man would say, "If you don't take that child from [Chelsea], that child's not going to have a chance,"" says Sheila.

Aside from the fact that raising Abby is a constant work in progress, Sheila and Butch and very happy when they see results from therapy and their at-home methods.

"It's always very rewarding when you try and try and finally you get something out of it," says Sheila.

Abby and Butch fishing last summer. Photo courtesy of Sheila Ims.