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My name is Willaine St. Pierre Sandy and I live in Carmel, Indiana.
I think now in 2011, what makes life better for our children with autism is the availability
of technology. I also homeschool, I don't know what I did before computers because the
availability of technology has made life a lot better for my children with autism. In
particular, for instance, the i-Pad and different things when we’re travelling or at the doctor’s
office. Another aspect is I think because of advocacy and education, a lot more individuals
in our society know about autism. It’s making it a lot easier for my children to function
in society then in the past. We’re not near where we need to be but we’re much closer
than we were. One thing, we’ll use Isaac, my son who is
15 and he has Asperger’s. Well actually both of them but more Isaac. It was a challenge
with school for a while, text books and workbooks, which is difficult for him. He has always
been very gifted in math and, you know, science. He has dyslexia so it’s always been harder
in reading; however, I couldn’t figure out how to keep him awake for some classes. Well
recently I was at conference, and I had to do a lesson so I Skyped the lesson. And I
started using PowerPoint lessons, which I emailed to them before and he gets to open
it, look at it. He knows what he is doing and lessons work perfectly now. We can even
do two hour history lessons and he stays awake and he’s in engaged. That's one aspect of
technology, another one is scheduling. It was always harder to him to stay on task but
he's always been a scheduled-orientated person. So if he knows he has something to do at a
certain time, he’s never had a problem doing it. So now new things I send, I have a Google
calendar for the family and I send it to his phone.
His six year old sister, actually First Steps, her First Steps speech therapist started her
on the computer with learning because of her hearing impairment. She pretty much when she
gets overwhelmed, she can do anything on the computer because we give her headphones and
she says the headphones make everybody go away. So she loves, they have to be a certain
type of headphone. They have to be big enough to cover her whole ear but we have no problems
keeping her on task at school. She’s six so scheduling is still an issue but technology
has helped also. Sort of funny, but she doesn’t sleep in the summer because the sun has not
gone down yet for her bedtime so in her mind that’s not bedtime. So we use the computer
to kind of show her, you know, what happens with the seasons. Now she understands that
it's bedtime. She still argues because the sun hasn't gone down but she understands that
it's bedtime. I have seven as I said. They’ve all been
homeschooled. My oldest is in her third semester of college. She was homeschooled since she
was in third grade. So for the last 11 years, we’ve been, 10 and half years. I was teaching
in a small private school and Isaac was in preschool when he was diagnosed and
Jenese(assumed spelling), who’s the one right above him, she’s 15 months older. She had
a different problem. The teacher had a hard time keeping up with her. She was a little
advanced. So my oldest daughter was having surgery because she has hearing problems so
I had three different issues. And my oldest daughter was missing a lot of school because
of her surgery and Isaac had started to get lost in the class. It was a small class but
he started getting lost. The principal asked me if I ever thought of homeschooling to get
them on track. And I was like, homeschooling? Because I’m from New York and homeschooling
is different than Indiana. And I was scared but I started it then to try to give him a
chance of not falling through the cracks at school and that's why I do it because of that.
And then we kept doing it because the majority of my children are involved in theatre. And
two of them are actually very involved so with different schedules, homeschooling just
worked better for us. Isaac, he doesn’t want to go, you know,
a school setting right now. Right now we’re in sort of, we started the
transitioning process with Isaac to gets him comfortable and understanding what college
would look for him. Or he has decided he's not going to, you know, go to med school like
his sister or he doesn’t know if he’s going to do a four year college but right
now he's committing to Ivy Tech, you know. So we’re starting the process with that.
The good thing is there are lots of the resources. I think things have changed, whether it’s
more information available for parents like me. So I have more options. Isaac is very
good at webinars. So he's fine with sitting at a webinar. So transitioning is good for us.
The six year old, well there’s not much happening in her life right now. She’s doing
well in school. She hasn’t decided what she wants to do; she’s not a theatre person.
She’s told me that straight up but we’ll see what she what she wants to do.
I have, I can say one major problem. I have, especially with Isaac, is finding professionals.
Especially doctors who are able to not only and I find this in my professional, you know,
life as well. Finding doctors in this area of Indiana, Indianapolis the greater ...
that are trained. I don't know exactly the right word, to either access or evaluate, work
with young people with autism, like teenagers, especially boys. It seems much easier for
the six year old then with Isaac. I have to drive to Martinsville, Bloomington for her
diagnosis and I drove to Jeffersonville, Indiana for Isaac's diagnosis and for, you know, checkups
or evaluations. Which he needs new ones because he, you know, is older. He was diagnosed at
four so that’s been very hard and very difficult, that’s a major problem I have. I still feel
professionals are not, doctors are not trained to not want to treat him with medicine every
time he goes before they find out, you know, so that's a major. I think the medical model
is still a problem. Isaac is reluctantly, at first gotten involved
into community theatre because he needed credits for his school and I knew he didn't wanna
do the acting part. He was asked if he would love to do tech at a production that his sisters
were in. And he tried lighting, obviously that didn’t work and he found out that the
sound, he loved it. And after about three weeks, they let him run it himself. So he’s
found that he likes to do that and he likes the, the writing, producing end. And so he
started doing producing and directing You Tube videos where his sisters and other friends
that are in theatre. So he has several of that on You Tube. And he seems to like that
so he's thinking of that part of study in school. He’s not sure where to incorporate
it yet. I want him to try and decide that on his own to see where he wants to go. He’s
very active in that. He looks forward to productions now like the rest of us. So we’re grateful
that the theatre gave him that opportunity. Before I had Isaac, I have a degree in Human
Services and my specialty was autism. And I could say it has changed in 20 years from
what we know now then what we knew then. But I still think the powers that be don’t know
enough about the challenges. Like I mentioned, the medical issue but also I think policies,
politicians, policies are designed to treat the problem or get rid of the problem versus
integrating and including. There’s still, I think politicians and powers to be need
to be, know that individuals with disabilities are part of communities and contribute to
communities. I think that's still something that this society in general doesn't see.
So I think that should be something that policy makers cannot just only in school system but
beyond that in everything. We have to go to special screenings at the movie theaters so
they can both be comfortable; special screenings at the Pacers games, when Isaac loves basketball.
So maybe to include, to have adapted technology to include, so policy makers need to understand
that, you know, they’re part of the community versus trying to make separate accommodations
but try to include individual’s disabilities in everything.
I just want to stress that I think, because I started out in the field not as parent but
as a student and a professional and now as a parent, I sort of see things that, and this
might not be popular with some people, but I kind of I’m more towards the universal
design. I just feel inclusion should not be a separate thing there’s got to be away
to include everyone in the community without, because Isaac does not like and his sister
doesn’t either when they go to a movie theater and everyone makes a big deal with giving her this
special FM. She just wants; he just wants to fit in like his sisters. So I guess if
society, more education. I’m all for education but advocacy for the policymakers to understand
that this is not a special favor they're doing for everyone but individuals with disabilities
have a lot to contribute to society.