Carly’s Voice (33 page)

[11:24:56 AM]
Carly joins conversation

[11:25:08 AM] Carly says:
can my house have a pool

[11:25:22 AM] Arthur says:
hi carly.

[11:25:42 AM] Arthur says:
well, mom and i have talked about putting a pool in at home.

[11:25:47 AM] Arthur says:
i know you would love that.

[11:27:55 AM] Carly says:
and a big bathtub

[11:28:20 AM] Arthur says:
I’ll bet you would like a “hot tub.” do you know what that is?

[11:33:29 AM] Carly says:
is it the one that the w ater shoots up your bum andfeet

[11:33:48 AM] Arthur says:
ha ha. you are funny. yes, you are right.

[11:34:01 AM] Arthur says:
a hot tub has water jets that shoot water. it feels nice.

[11:35:56 AM] Carly says:
i want one

[11:36:13 AM] Arthur says:
well, we’ll have to see how it all works out.

[11:36:46 AM] Arthur says:
mom and I are working with Adam’s parents.

[11:36:57 AM] Arthur says:
we are trying to arrange for a house in toronto.

[11:37:25 AM] Arthur says:
It would be much closer and you could come and go more frequently.

[11:37:42 AM] Arthur says:
the house we’re looking at right now is closer to my office. it is down town.

[11:37:58 AM] Arthur says:
Shari lives two doors up the street from the house.

[11:38:19 AM] Arthur says:
but it may take us a while to work it all out.

[11:38:25 AM] Arthur says:
so you have to be very patient.

[11:38:27 AM] Arthur says:
okay?

[11:40:01 AM] Carly says:
can i see uit

[11:40:29 AM] Arthur says:
i will have to find out. right now, there are a few young men who live there. they
will be moving out.

[11:40:37 AM] Arthur says:
then we would need to do some work to fix it up a bit.

[11:42:26 AM] Carly says:
can i put a hot tub in

[11:43:15 AM] Arthur says:
hmm. i don’t know. it’s pretty expensive!

[11:44:17 AM] Carly says:
and a big pool

[11:44:28 AM] Arthur says:
well i KNOW they can’t put a pool in.

[11:44:32 AM] Arthur says:
the backyard is very small.

[11:44:39 AM] Arthur says:
in fact, right now, it’s just the driveway.

[11:44:50 AM] Arthur says:
but I want to put in a patio and a garden if they will let me.

[11:45:06 AM] Arthur says:
i think maybe we should think about putting a pool in at our house though!

[11:45:14 AM] Arthur says:
and you would use it here.

[11:48:34 AM] Carly says:
i want a big pool

[11:48:45 AM] Arthur says:
I hear you. I do too!

[11:51:26 AM] Arthur says:
Carly, what else would you like to talk about?

[11:52:17 AM] Arthur says:
It’s great that you are writing. I know you don’t like it,

[11:52:40 AM] Arthur says:
but it is the only way we can all understand what you are thinking and what you want.

[11:53:01 AM] Carly says:
ellen had a woman on and she had a son like me and she fixt him

[11:54:00 AM] Arthur says:
Carly, I know that your challenges make your life very hard.

[11:54:06 AM] Arthur says:
But you do not need to be fixed.

[11:54:17 AM] Arthur says:
you just different than some other people.

[11:54:22 AM] Arthur says:
But you are very smart.

[11:54:27 AM] Arthur says:
You can write.

[11:54:37 AM] Arthur says:
And as you get older, you will have more control over your body.

[11:54:47 AM] Arthur says:
And you will be able to type very fast like me!

[11:55:00 AM] Arthur says:
Trust me, you will be able to do a lot of things.

[11:55:10 AM] Arthur says:
But don’t give up hope. And be patient, okay?

[11:56:51 AM] Arthur says:
Mom, Howard and I are going to see Dr. Stein again in a few weeks and talk about some
changes to your medication.

[11:57:35 AM] Carly says:
he can now talk i want toooooooo talk like him

[11:58:03 AM] Arthur says:
i know you do. but promise me you will keep writing for now. we will keep looking
for ways to help you speak.

[11:58:15 AM] Arthur says:
but you are so smart and have good things to say. so write them!

[12:01:59 AM] Carly says:
it is to hard and if I could talk i could stay home with you

[12:02:38 AM] Arthur says:
I know. But that isn’t the reason you live at Cedarview part of the week.

[12:03:00 AM] Arthur says:
you live there because they have staff who can help you take care of yourself.

[12:03:10 AM] Arthur says:
they have lots of people who can help teach you.

[12:08:38 AM] Carly says:
if i could talk i would tell you i dont want to go i want to stay with you and mom

All good things come to an end, as the expression goes. Thank God, everything bad
has an expiration date, too. Although Cedarview provided the services we needed, no
one felt good about Carly’s living situation. Even Taryn and Matthew pouted that we
had sent their sister away—an accusation that was hard to hear. It was clear, however,
that Carly was still not ready to live full-time at home if Tammy and I were to maintain
a marriage and our sanity. But there had to be a long-term alternative to Carly’s
living many miles away four days a week and being homeschooled the other three.

We had become close to two other families through our years of litigation and negotiation
with the government and schools over providing the needed services for our children.
The families each had a child living part-time at Cedarview. They were equally eager
to find a way to have their children be a part of their lives without losing their
minds. After an exhaustive search of the options available to children and young adults
and their families, we came to the conclusion that the area of the country we lived
in was several decades behind other areas of North America. Our dream was to have
a home in Toronto that was run by staff trained in ABA where kids could live full-
or part-time, and have access to one of the two top private schools for children with
autism in the city. It was a lovely dream. A $400,000-a-year-per-kid dream based on
the estimates of the government agency that managed Carly’s residential care. With
that price tag it would remain a dream. Kids who are “in the system,” as they are
described, have a per diem amount allotted to them and none of the three families
could get that kind of allotment. Nor were we in a position to fund it personally.

The families were used to hearing two words:
expensive
and
no
. Neither was daunting any longer, however. We learned that the only way to
not
get no for an answer was to ask a different question. So rather than asking for direct
funding and purchasing our own property for the three kids, we took a slower, collaborative
approach.

Peter McPherson, the executive director of the youth services agency we relied on
to help fund Carly’s per diem at Cedarview, was not the usual bureaucrat with whom
we had worked before. While he maintained good relations with his government counterparts,
playing by the rules as necessary, he had a creative bent and a progressive attitude.
In him, we saw a kindred spirit and the hunger to do something radically different
for kids with autism in Toronto.

“We want to start a program like the Eden II model on Long Island, New York,” Tammy
told Peter. We had regularly scheduled
plan-of-care meetings with the social workers and Peter to assess Carly’s living situation,
and we used this as an opportunity to spring our latest idea on him. “We want Carly
closer to home. And she needs to be in school.”

We were sitting in the small office Peter shared with one of his colleagues. The offices,
a rabbit’s burrow of cubicles and nooks, housed the government-sponsored agency that
was responsible for providing services for children who either were at-risk in their
homes or required extensive support and intervention. Most cases were dire; many families
involved single parents, welfare support, and a heartbreaking list of dysfunctions
and catastrophes. We were an anomaly.

We were three relatively well-heeled families with good homes and good jobs. It would
have been well within Peter’s rights to show us the door and call us ingrates. Each
of our three children had private rooms at a well-run group facility. Because of the
government’s philosophy that keeping children home was the first priority, there were
limited facilities to support kids like ours. And those that got in were the province’s
most tragic cases. But we wanted more. While we were constantly pushing for better
services for our kids, we were critically aware that our kids already had it pretty
good. More than a few times I caught sidelong glances between social workers and administrators
as we requested more funding, more services, and better settings over the years. I
knew what they were thinking; it wasn’t subtle. Rather than being cowed by embarrassment,
Tammy and I chose to think of ourselves as Carly’s advocates. “Why doesn’t she deserve
more?” we reasoned. Anything we asked for was to improve her quality of life.

“We want to open our own group home,” our friend Rebecca told Peter. On the days the
other families’ sons were not at Cedarview, they attended Carlton Learning Centre.
In fact, both families had been founders of the school. They had helped create something
out of nothing, so the prospect of starting a new group home did not seem so far-fetched
to them. “Perhaps we could do it in association with either Carlton or Autism Resources,”
said Rebecca, referring to the two programs the families were currently using.

Peter, a man in his fifties with the remnants of an Irish brogue and clear, blue eyes,
sat and listened patiently. We had come to expect the litany of excuses that often
poured out of the social service workers and bureaucrats we’d encountered over the
years. But the request sounded reasonable, if not lofty, and faced with three earnest
couples, Peter paid attention. He nodded, dutifully explained all the hurdles we’d
have to overcome, and agreed to help. “But you’ll never get your own license,” he
said. “The province stopped writing new licenses for youth facilities.” Peter went
on to explain the red tape we’d have to hack our way through to find an alternative.
Tape of any color didn’t discourage us given our collective skill at tackling bureaucracy.

“But I know there’s a group home for intellectually challenged young adults in midtown,”
Tammy pointed out. “It’s in a great family neighborhood about ten minutes from us.”

“That house was licensed about twenty years ago,” Peter interrupted. “There are no
houses in those kinds of neighborhoods anymore.” He wasn’t being obstinate, but wanted
us to lower our expectations. We would not be creating a group home in the rarified
air of an affluent or even middle-class urban setting. Most homes were located on
the outskirts of the city or well into the country where real estate prices were more
modest and neighbors less troublesome.

In the coming months we had a series of meetings with various groups with the experience
and licenses to run group facilities for children and teens. After meeting several
and testing their interest for the task, we found one with the same enthusiasm as
Peter. The group, Future Horizons, ran numerous group homes across the city.
It was important for us to find someone with not only the horsepower to get a program
like this up and running, but the open attitude to allow parents to be involved in
its design. Most parents of kids needing residential programs were in crisis themselves.
They looked upon any help as a godsend and seldom challenged the form it came in.
We weren’t sure if not-for-profit groups were ready for our utopian vision and assertive
manner.

While Dave, FH’s director, began the search for viable residences, Tammy organized
a trip to Long Island to meet with the regional director of the Eden II program. Both
Peter and Dave joined her, as did Rebecca. The team returned from their two-day tour
excited by what they saw. Eden II had been in existence since 1976 and was known as
a model of excellence in providing living and education services to young adults and
adults living with autism. The facilities were family homes in suburban neighborhoods.
Residents each had their own room and participated to the best of their ability in
the running of the house. During the day, the younger residents attended either local
schools or schools for students with autism. Because the homes were located in the
community, families were encouraged to be part of the household.

Our troupe quickly adapted roles that matched our personalities and skills. Rebecca,
who was completing her master’s in education, played the role of ensuring the program
met the high standards they had created at Carlton. Ryan, a successful lawyer, had
the calm, practical skills to help master the bureaucracy. His wife, Alyssa, was the
daughter of two psychologists with a background in supervising residential group facilities.
With my business background, I acted as project manager and sought out creative ways
to get the house (if we ever found it) renovated and furnished. Tammy was Tammy—smart,
connected, uncompromising, and tenacious. Any time a compromise was proffered in order
to expedite the program, Tammy fought back. She reasoned that we had compromised
enough. “Why should these kids get less because of their disability?” she continuously
challenged. “Shouldn’t they get
more
to help them overcome it?”