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Okay.
[Kathleen Miller] I want to let you know that we are recording this session.
However, there will be 10 minutes at the end of the session where we will not be recording,
so if there are any questions that you may have that are of a confidential nature,
you can feel free to ask them then.
We will remind you about this later in the program, as well.
The C2P2 Family Leadership.
There are four major project activities.
They include this webinar.
With this as the first of a series of webinars.
So, we have online leadership development training.
Guidance and technical assistance from trained parent consultants.
And then, we will be having an annual opportunity for networking with other families
to help achieve true inclusion for children.
And, in addition to this, we will have online resources available to those
who are interested in this project.
So, as I said, the first webinar is tonight.
We're very pleased that we have Tim Gruesel with us, who will be conducting creating
a vision for your child's future for this evening.
Future webinars, which will be starting next year,
probably at the beginning of the school year.
We don't have the dates confirmed yet, but look for us
and, since you're on our webinar, you'll be on our mailing list.
And we'll be sending you notices.
Some of the ideas that we've come up with are inclusion basics.
Another session on parent/professional relationships.
Working collaboratively with your administrators and educators at your school.
Another topic will be, how to connect with community resources.
Parents have told us that making smooth transitions is also a very important topic
that we'd like to bring you some state-of-the-art practice information.
As well as, information on SocialSecurity disability benefits and Medicaid.
So,
those are just a few of the topicsthat we intend to have next year.
In terms of the guidance and technicalassistance from trained parent consultants,
we're very pleased here at the institute tobe collaborating with Pennsylvania's Education
for All Coalition, which is known as PEAC.
Parent consultants will be matched with familiesparticipating in C2P2 Family Leaders training.
Training those folks who needguidance and technical assistance.
We'll be doing a match, and youcan, you know, really have some one
on one great information from those
parent consultants who are very well-versed in inclusive practices.
Our intention is that, in May 2014,
a face to face networking event will be held for eligible C2P2/FL families.
We know from our 20 years of experience in doing face-to-face training for families
in leadership development, that one of the most important components of doing --
of having family leadership training,
is really to have some good face-to-face time with other families.
It gives you the opportunity to meet one another.
To form some alliances, and to develop and learn from each other.
People have told us over the years, and we just know this to be true.
And I think this will be a really important piece of this particular project.
The other really incredible and robust piece that we're going to have for you is that,
all of these webinars are recorded, as I had mentioned.
And they will be on our website at the Institute on Disabilities as well as,
we are developing other online resources.
You can see on your screen, there are these two resources.
One is a Ning group, and it's, again, a platform for people to, for us to share some
of the best practices information and resources with individuals as well as to have some --
people can log on to this and join the Ning platform.
And be able to have the discussion virtually with one another about this.
We also have a closed Facebook, which you'll see this referenced.
And this -- you know, you can, this will be posted for you after the webinar.
So, again, the goal of this project is to create a network of family leaders
who will work together with educators and administrators
to champion inclusive practices for children with
disabilities in the Non-Traditional school community.
This is my contact information.
If people have any questions after the session, please feel free to contact me,
and I will put you in touch with the right person to speak with.
And I would like to remind you right now, we are required by our funders --
and we certainly do want to keep that --
to make this experience as good an experience as it can possibly be for you.
So, we have this.
We've developed a SurveyMonkey survey.
It will take you no longer than five, 10 minutes to complete it.
But, if you can please fill out the survey and give us feedback
on how we can improve this session.
You may have some great ideas for other topics that we can cover in the next year's,
so that would be very helpful for us.
Some of the other things, I'm repeating myself, but this session is recorded.
It's important for people to know that.
We have decided, as I said, for confidentiality reasons, if people are uncomfortable
with not having some information or questions being asked, that you can do so at 8:20,
right before the 10 minutes before we close the session.
If you would like to ask a question during this session, you'll see on the right hand
of your screen, that there's a little hand icon.
So, if you just hit the hand icon, it will appear.
We will get a message on this side of the computer that you want to ask a question.
And Tim Gruesel, who is our speaker this evening, will be able to --
will acknowledge you, and you'll ask your question.
And so, without any further ado, I'm really very pleased to have someone who has worked
with us here at the Institute on Disabilities for many years, doing our family leadership.
In fact, I think he was there from the very beginning.
So, for the past 20 years,
Tim has been really working with many of our families and individuals with disabilities,
talking about this particular subject.
And we're very pleased to bring him to you to talk
about creating a vision for your child's future.
And Tim is the director of quality, the Quality Enhancement Support Team here in Pennsylvania.
So, I'm going to let Tim take over now.
Thank you so much.
Okay. Before we get started with Tim, does anyone have any questions?
Click your little hand icon, or forever hold your hand.
Okay. All right, we're going to go to Tim.
Right.
[Tim Gruesel] Good evening.
Hi, I'm Tim Gruesel.
It's an honor to be here as it always is.
As Kathy mentioned, I've been doing this.
I'm one of the original presenters from C2P2.
And been doing this for about 20 years.
I hope everybody's having a good evening so far.
And we'll -- if anybody has any questions as we go along, please feel free to send them our way.
Little bit about me.
I've been in the field of developmental disabilities
and intellectual disabilities for 40 years, this year.
And I've done -- had a very eclectic career.
I'm done just about everything that there is to do in this field,
and including supports coordination, running residential programs, state programs.
Working for government, working in the consulting side of things,
and working at the Institute on Disabilities.
I want you to know right up front that I don't have a whole lot of experience with kids.
And that there's a reason for that as, in terms of why I'm actually presenting this evening.
Because it ties into the subject matter, which is creating a vision for your child's future.
Kids become teenagers.
Teenagers become young adults.
Young adults become adults.
Adults have their continuum of life and become older adults.
And the whole process of moving from one life stage to another is about moving forward
and creating a vision for the time period that you're in.
So, it's very important for families to understand --
begin to understand the visioning process very early on.
What does envisioning the future mean?
On a day-to-day basis, families are consumed with getting the meals
on the table, the kids to the soccer games.
Transporting to choir practice, church activities,
playground activities, swimming teams.
And when we're sort of wrapped up in our day-to-day existence, we sometimes lose sight
of the future until it's sort of upon us.
From a historical point of view, we want to begin to focus on our hopes, our dreams,
and our personal aspirations for our kids.
That sounds like a pretty simple concept when we're dealing
with the systems that support children.
The education system, the therapy system, the early intervention systems.
But focusing on our hopes, dreams, personal aspirations is something that's relatively new.
It's not something that was available to families from --
except in, perhaps, the last 40 years or so.
Because focusing on our kids' hopes, and dreams, and aspirations,
was something that was typically left to the professionals.
It was left to the teachers.
It was left to the therapists.
It was left to the doctors.
It was left to the people who controlled how supports and services were delivered to kids.
And it really didn't have very >much to do with families at all.
And -- but that's changed.
That's changed with the advent and the continuum of what's called a person-centered model
of support where we now -- where the old days of having people
from the outside run life for kids.
It's about kids and their families, and their friends, and their supports,
and their grandparents, and their aunts, and their uncles,
who are helping to establish their dreams of personal aspirations.
And to define those.
The role of parents are, is as the guardian, the standard bearer,
the nurturer of your child's future.
I have a daughter.
In the beginning, when she was a little girl,
she was a wholly owned subsidiary of the Tim Gruesel Corporation.
She was mine.
I owned her, and I was in charge of defining what her future was going to look like.
But, as time went on, the role of parents is
to transfer the ownership of the future to their child.
When my daughter was born, I had hopes, dreams, aspirations for her.
I acted on those things to a point, at which point, she began to take those things over.
I remember specifically the first time it really happened,
where she had her own dreams and aspirations.
And her own vision of the future that was inconsistent with mine.
And that's when she was five years old.
And she -- I remember this like it was yesterday.
Where my vision, my hopes and dreams,
for her was that she would have some exposure and some sense of spirituality.
So, we went to church together.
And I thought that was a very important part of her future.
She did not, when she was five years old.
And I remember like it was yesterday, walking up to the church where we were attending,
and my daughter pulling back on my hand and saying, "I'm not going in."
And it's like, "What do you mean, you're not going in?
Yeah, you're going in.
You're going in, and you're going in now."
The organ music is starting to play.
And she decided at that point that she was wearing the ugliest dress
that ever been put on a little girl.
And that, if she walked into the church, that people would fall out of the pews
and would start rolling around in the aisles laughing hysterically.
So, it was the first time she ever began the process
of defining what her own future was going to be.
And from there on, it sort of went downhill.
No, it didn't.
But, at the age of -- and she's now 31 years old --
and, at this point, although I still have private hopes, and dreams, and aspirations,
the whole role of parenting was about turning those over in a logical, sane,
safe way for her to become an adult.
And that's the role that parents have in transferring
that ownership of the future to the child.
But in the beginning, as parents, we own it.
Why do we talk about a vision and the importance of it in the first place?
Well, it's because, for many of you, you will become involved in planning
for different supports and services that your child may need to support him
or her as they move through their childhood and into their adolescence
and into their teenage years, and even their adult years.
And the planning, you know, it's one of the sort of facts of life.
It's one of the realities, and it sort of -- the piece that is, it presents a lot of difficulties
for families at times, and -- but we need to do it.
And there's a lot of reasons, mostly, for monetary reasons.
But it establishes a blueprint for support and services,
the foundation for growth and development.
There's some examples of planning that families will likely run into over time.
The Individual Education Plan.
Individual Education Plan, just as sort of an aside, if you're not familiar with this,
is something that actually originated in Pennsylvania as a response to the 1971 Right
to Education litigation that allowed kids to have a free
and appropriate education in our public school system.
That laid the foundation for what happened later in 1975, which is the Individuals
with Disabilities Education Act, which broadened the rights of kids
for education throughout the whole country.
The IEP is the planning document that is used in the school system, in the education system.
Another example of planning is theIndividual Service -- I'm sorry --
the Individual Supports Plan, which isthe planning process for, typically,
for adults who use supports and services.
And the IFSP, the Individual Family ServicesPlan, which goes from birth to three years old.
One of the most overlooked parts of the wholeplanning process is the vision piece of that.
In none of these -- and I'm goingto go back for just a second --
in none of these examples of planning, theIEP, the ISP, the IFSP, is there a requirement
that there be any kind ofbroad vision statement.
And we'll talk a lot, and we'lltalk about what that means.
But none of them have thatas a component of planning.
All of them have goals and objectivesand outcome statement and measurement
and how we know things are getting done.
But none of them actually requires that there be a big picture that says, "Here's where my son
or daughter is going in the future," and lays out that sort of road map for,
your son or daughter to get where they're going.
It's critical but very overlooked aspect of planning.
And it's one that because it's not a requirement of planning, it's sort of left to the whims
of who might be working with the planning process or controlling the planning process.
And that's why I'm here to talk to you tonight as parents because it's
so incredibly important to lay that framework.
And that a well-formulated and articulated vision serves
as the foundation for all aspects of planning.
That anything that comes afterwards should relate to the big picture.
The vision statement is a keystone of planning.
All aspects of planning are built upon the foundation of a long-term vision.
The goals, the objectives.
The goals, which are the short-term steps to achieving the vision.
The objectives, the steps to attain goals.
And how we implement the way to get from point A to point B is the implementation strategies.
And most plans have those three pieces, but very few have well-articulated vision statements.
Yogi Berra, the great baseball player, manager, perhaps said it best.
"If you don't know where you're going, don't be surprised if you end up somewhere else."
And that's very true.
Because if we don't know exactly what the future holds for our kids, sometimes we get to a place
that we just really don't want to be.
And then, we look back, and we say, "How did that happen?"
And we realize that, it's probably because we didn't define
where we were going in the first place.
So, we want to begin to think about our kids in terms of where they're going to be
at some point in time in the future.
What a vision statement does.
A well-constructed vision statement, which becomes a part of any kind of plan,
allows for there to be consensus.
What do I mean by that?
It means that, when you walk into a room that's filled with teachers, and administrators,
and physical therapists, and occupational therapists, and recreational therapists,
and music therapists, that everybody is going to sort of have their own sense
of where your son or daughter should be heading.
That may or may not be consistent with where you want them to be headed as a parent.
Or where your child wants to be headed in conjunction with how --
with your relationship with your child.
And a well-constructed vision statement allows for there to be the beginning of consensus.
That where people wrap themselves around the notion where you're headed going forward.
It also helps to define the parameters of what's negotiable to you as a mom and dad,
and what's non-negotiable to you, to the mom and dad, in terms of where your child is heading.
An example.
A mom or dad, parents, might have a vision where they would like their child,
at some point in time, to use full sentences to communicate language, with language.
This step, that might be non-negotiable, as something where you see your kids headed.
And that brings, that sends a very clear message to the speech therapist.
That -- that's non-negotiable, to you as a family,
in terms of where your son or daughter is heading.
So, that we need to begin to think about those things that just are critical for your child,
and where you see them going in the future.
All right.
A well-defined vision statement, it provides the criteria for judging the sanity, rationality,
and functionality of all other planning elements.
I've been doing this for a very long time.
I work with plans all the times.
I'm going to get to some, one that I actually worked
with today, as an example in a little bit.
And I can tell you from professional and personal experience that the planning processes
that are in place, the support people are all oftentimes not very sane.
They're not very rational, and they're not very functional.
In other words, they are oftentimes not worth the paper that they're actually printed on.
And that a tightly-defined vision statement, a crafting of where you see your son
or daughter heading in the future, allows you to begin to judge the sanity, the rationality,
and functionality of all other planning elements.
For instance, let's -- I've seen plans that will have things
that don't have anything to do with anything.
A goal for a kid to tie their shoe.
And that's something that somebody else imposed on a child without really thinking it
through in terms of what that means to the child, to his or her family.
That may not be important at all.
It may be functional at all.
It may not be rational at all.
It might not be necessary at all.
And it might end up being one of those things that really frustrates a child,
but it ends up in a plan because the vision piece of it isn't really firmed up,
and so people begin to introduce things that just don't really make sense.
A well-crafted vision statement allows you to begin to test the sanity
of what's in the rest of the plan.
And a vision statement is an evaluation tool for you as a family to determine
if your child is moving in the desired direction.
In other words, if you have a sense of where you're going, and it's actually written down,
and it's actually out there for people to understand and to form the basis of planning.
You can figure out whether or not your child's moving in the direction
that you want him or her to be going in.
So, we need to have this as a part of planning.
And, again, this is not something that's typically a required part of planning.
And it's really left to the family to do and to bring to the table.
Oops, I think I went too far.
Hang on a second.
The answer to a well-defined vision statement, of which I think I touched on a little bit,
we end up, we run the risk of ending up with things that don't make sense.
We have goals that end up not making sense.
I see bad goals all the time.
I brought a couple along with me.
They're not as part of the -- they're not part of the actual PowerPoint presentation.
But here's one where, it was in a little boy's plan.
It said, "H."
It's not his full name, obviously.
"H. will cross the street safely three out of six trials," which, I don't know exactly,
but it means that, maybe, he can be hit by a bus three out of those six times.
I don't know.
But it -- or that, "L.
will wear only one article of clothing daily seven days a week."
Or, "When handed a soaped washcloth and given unlimited verbal cues, J. will bathe all parts
of his body, except his left arm, left hand, and back, four out of seven times."
I mean, what does that mean?
It doesn't make sense.
It doesn't have anything to do with anything.
And, but these are the kind of goals that show up in plans in the absence
of a well-articulated vision statement that says,
"This is where my son or daughter is going."
And it, in the absence of a well-crafted vision statement, we sometimes end up with services
that don't contribute to desired outcomes.
In other words, we end up with therapy services or education services
that really don't contribute to where your son or daughter is headed.
And then, we have wasted resources and effort.
And in a time of limited resources and effort, we want to make sure that the resources
and effort that we have access to are used as appropriately
as we possibly can to support where we're headed.
Okay.
I want you to think about your own individual day.
If we were live and we were acting here, I would have picked on one
of you to walk me through your day.
I'll do it for you.
What did I do this morning?
When I woke up this morning, the first thing I did was I got out of bed.
I put my feet on the floor, threw my bathrobe on.
I walked downstairs.
I have two little screaming terriers that were begging for breakfast
and make outrageous noises at me until I feed them.
I feed them.
I take them out to do their business.
I bring them back in.
Then, I go over to my coffee machine.
I have a cup of coffee.
Actually, two.
After I pick up the newspaper, one of my terriers,
who brings it down the driveway for me.
So, anyway, did that.
Then, I had a cup of coffee, and I had some yogurt.
I took a shower.
I shaved. I brushed my teeth.
I ironed the shirt that you see me wearing.
Kind of wrinkled at this time of day, but I did that.
And then, let's see, what else did I do after that?
After I got dressed, I went down to my office and did some emails.
Returned some calls.
And then, I would, made some notes for this presentation for this evening.
After that, I did a couple more phone calls.
Got my car.
Drove to Philadelphia from Redding.
And did some field work for another project that I work on regularly.
And did some evaluation work in field today.
After I was done with that -- what did I do after I was done with that?
Oh, yes. Made some more calls from my car.
Got in my car.
Drove down to Temple here.
And here I am.
And I'm making this presentation this evening with you all.
And spent some time with some of my colleagues, here at the Institute on Disabilities.
And when I get home this evening, which is probably about an hour and a half drive,
I'll probably hang out a little bit.
Watch a little TV.
And then, I'll go to bed.
And that was my day.
Now, when you think about it, I spent time living,
which was stuff related to, you know, just getting ready.
Organizing my life.
Getting it, you know, my shirt done.
My body clean.
My face shaved.
The kind of stuff that you do to take care of yourself to live on a day-to-day basis.
I learned.
This whole experience with the webinar is a learning experience for me today
because I've never done it before.
For 20 years, I've done this presentation live, and it's really, really strange just
to be talking to a camera, rather to actual people.
Like -- and who I can talk to and look at, and share, and laugh with.
And pick your brain, and you pick mine.
Whole kind of thing.
So, this is really strange, and it's weird, but I'm learning something.
I'm doing a stretch here, and it's cool because I'm learning.
So, I'm spending some time today learning.
Through living, I've been learning.
I've been working because I was working on some of the other projects that I was doing today.
I spend time having and building relationships.
Working on some old ones.
Making some new ones with some of the folks here that I've never worked with before.
And number five, I probably won't get to do a whole lot of today.
I'll do that tomorrow when, you know, just have an office day in my office.
And I'll get to go to the gym after work and that kind of thing.
I probably won't do a whole lot of free time.
But when you think about it.
When you break down your day.
When you break down life.
It really is only those five things.
It's very depressing.
It's really only five things.
It's living, learning, working, having and building relationships,
and playing, and how we spend our free time.
That's it, folks.
That's it.
That's 24 hours.
That is it.
So, when we're beginning the process of thinking about where we're going in the future,
I'd like you to think about how you see your child, in terms of where, how, and with --
I think that should be with whom.
Is that right?
That should be with whom.
I screwed that up.
It should end with whom.
He or she will live, learn, work, have and build relationships, play and spend free time.
Those are the five elements of a day of life.
And when we strip it all down, that's what it is.
So, if can identify, we can begin the process of identifying with your son or daughter is headed,
in terms of where, how, with whom he or she will live, learn,
work, play, and build relationships.
We got the fundamentals of a vision statement.
I'd like, before -- I always recommend this --
before you engage in the process of creating a vision statement for your son or daughter.
For your children.
I really encourage you to go through the exercise of doing it yourself.
It's very powerful because, again, when we're caught up in the day-to-day stuff that --
you know, just, you know, of living, we sometimes need to step back
and take a look at where our own lives are.
And, if we were doing this as a live exercise,
I would actually ask you to be doing this right now.
This exercise has actually evoked laughter.
It's evoked tears.
It's evoked frustration.
It's evoked anger.
It's evoked all kinds of emotional responses from people
who have just given the time to sit and do this.
It's a reflective exercise that allows you to look at your life, where it was,
where it is today, and where it is in the future.
I would encourage you to do this.
This is, there is downloads for this on the institute's website.
Where there's a chart.
It's a little bit bigger than this, that you can go and fill this out.
I picked five years ago.
Five years in an adult's life is a pretty reasonable time to look backwards.
It's a pretty reasonable time to look forward.
Take a look at where your life was five years ago in terms of where were you living?
What were you learning?
Where were you working?
What kind of relationships did you have?
What were you doing with your free time?
What's it look like today?
And, if you can do those twothings, it gives you the comparison
that sometimes is necessary to look ahead.
Where do you want to be living?
What do you want to be learning?
Where do you want to be working?
Who do you want to be hanging out with?
And what do you want to be doing with your free time?
And, if you can go through this exercise for yourself, I think it will help
to clarify how you do it for your son or daughter.
It will make it a little bit easier to begin the process of creating
that vision statement for him or her.
Again, the chart is on the website that you can download after this is over this evening.
Obviously, when we're working, when we're trying to create a vision for our child and look
into the future, in terms of where, how, and with whom your child will live,
learn, work, play, have relationships.
There -- we don't do it in terms of five-year increments.
We can't because age is a factor.
Babies evolve very quickly.
A one year old.
Two months in a one year old's life is like, almost like 20 years in an adult's life,
in terms of what they learn, where they're going, what they're doing.
They're walking, they're talking, they're moving around, they're fidgeting.
They're learning about their hands, their feet, their all.
It's an amazing time in the child's life.
So, you can't really use a five year timeframe, necessarily, if you don't want to.
Factors that influence a vision statement are a child's age.
Our child's health situation.
A child might have health influence or a health concern
that might influence how far we see into the future.
How we see into the future.
Learning. For some kids, some kids learn very quickly, some kids don't learn very quickly.
Some kids are slower to pick up things than others.
So, that the learning piece has a lot to do with the time frame.
And the motivation.
Motivation, in terms of creating a vision statement,
has a lot to do with how far we can look into the future as well.
For right now, I'm getting a whole lot more motivated to think about retirement
than I was when I was 30 or 35 years old.
When I was 30 or 35, I was thinking about defining my work career,
and working to do the best that I could, so I could move forward.
Now, I'm thinking sort of on the back side of it.
And so, the motivation becomes different for how you see the future.
The same thing with your child.
And their place in the family.
Once we create a vision statement.
Once we've got this thing.
Once we've looked into the future, into our crystal ball, and we said, "Hey.
My son or daughter wants to live, learn, work, play with this person,
in this way, in this place, in this manner."
What do we do with it?
Well, there's a lot of things we can do with it.
A lot of things we should do with it.
First and foremost, I think you might want to think about package.
In C2P2, over the 20 years that I've been working with that,
I've seen some of the most creative packaging that you could imagine,
in terms of once the vision has been created.
We want to capture.
We can't keep it in our head.
It's not going to do anybody any good, especially your child, if it's in your head.
It's got to come out of your head.
It's got to be packaged in some way.
Excuse me, that was my Mark Overveo [assumed spelling] imitation.
There's all kinds of ways to package it.
You could create a book.
I've seen parents create books.
I've seen parents take a vision statement.
I've seen it, them take it to Staples and laminate it between plastic.
And so that it becomes sort of like a wall poster.
I've seen people actually put it on little business cards.
Those little business cards that you hand out.
It's got a [inaudible], it's got their kid's picture on the front of it,
and the vision statement in the back -- on the back of it.
I've seen people do it up by video.
By CD. By different video presentations.
The most important thing, though, like I said is, once the vision is created.
Once we've thought through where, how, and with whom our child's going to live, learn, work,
play, and spend time with others in the future, we've got to share it with others.
We can't keep it in our head.
We've got to be willing to get it out there and present it to the people who are going
to be supporting your child going forward.
That could be the IEP team.
That could be therapist.
That could be teachers.
It could be administrators.
It could be all kinds of different support professionals,
but it's got to be presented, so that they can know it.
They can't guess it.
They're not going to know it.
They don't read minds.
And if you don't have it, then you run into,
you run the risk of it not becoming a part of the planning process.
And when I say, making it a part of the plan process, we want to make sure that we ask
that it be included in the actual planning document itself.
If anybody ever tells you that you can't put a vision statement into an IEP, that's not true.
You can put anything in the plan that you want, including, you know,
a video that can be attached to the IEP.
In fact, there's no rules on that.
So that you can ask for -- and you should ask for it --
that the vision statement become a part of the IEP, as an attachment.
And so that the rest of the IEP can be judged in terms of what -- how it makes sense.
Okay. I want to share with you some real-world experiences with parents
who have created vision statements.
I just got a letter, actually, and I'm going to read you part of it.
I just got this not too long ago from a parent who was in one of the live C2P2 classes.
And she wrote me this letter.
I said, "Dear Mr. Gruesel, I want to thank you for taking the time to present
at our Competence and Confidence Partners in Policy Making
for Families," blah, blah, blah, blah, blah.
Okay. "I'm certain that the vision statement will hold a lot of power in my child's future.
Thank you for suggesting that we create them for our children.
I've been working on it since this past Sunday.
It's a work in progress, as I know that I'll revisit it as I learn more information.
You instructed that we should address how, where,
and with whom we envision our child living, learning, working, interacting,
and playing in the vision statement.
As I jumped into this assignment, I realized that I want my son to fill in many of the blanks
for himself, so, I chose to word it accordingly.
My vision won't fit onto a business card,
but that just shows how infinite my son's future will be.
I decided to include a picture of my son.
One showing his inquisitive nature in the vision,
so it will make an even greater impact on those who read it.
I've enclosed a copy for you to read.
The vision statement will be used to set the tone of any
and all services my son will receive.
As such, it will be used as a guide to establish the necessary goals
and select the appropriate strategies, techniques to bring that vision to fruition.
That is extremely powerful.
However, the section of the presentation that had the greatest impact
at this moment was the section about the downfall of labels.
As soon as I arrived home on last Friday night,
I wrote about my son's strengths and positive attributes.
I don't know how else to express it, but to say, I needed that.
In some ways, I felt like I was drowning in a sea
of medical diagnoses and uncertain prognosis.
This task not only brought me to the water's surface for a breath of air,
but it also gave me the strength to leap out of the water
and then plunge back in with a renewed spirit.
I'm now swimming.
And so is my son."
That's the kind of thing that I hope that each of you can get to,
where you begin to see your child in terms of their future.
I know that each of you has dreams, and hopes, and aspirations for your children,
and that you want to share those with other people.
If you do, it will make such a huge difference in the planning process,
and in whether things work or don't work.
Whether sane or not sane.
Whether they're helpful or not helpful.
And it's a huge responsibility.
I understand that.
But to bring it out into the open and give it light, and give it sun, and give it warmth,
and give it water, is like sort of growing a garden.
I sort liken planning, sometimes to baking a cake.
You can bake a cake, and you can do it the right way.
You can follow the recipe, and you have this marvelous, delicious confection that's tasty
and melts in your mouth, or you can bake a cake like sometimes I do, which is lopsided,
and it's a big, huge mess, and it doesn't do what it was intended to do,
which is to nourish and to be delicious.
And it's not.
And so, planning is like that.
When we include the vision piece of it, it is really the icing on the cake.
And it's really the thing that really binds the rest of the cake ingredients together.
On your -- on the presentation, we have a number of actual vision statements
that people have written for their kids.
I'd like to walk through one of the shorter of the two,
but I encourage each of you to read these.
To take a look at the vision statements.
These are very specific to the folks that wrote them.
It's the families bringing, you know, to others what they want for their son or daughter.
I wasn't to share Sophia Madison S. with you.
"My name is Sophia, which is Greek for "wisdom", but most people call me Sophie.
My family also calls me Sister.
I would like to tell you about myself.
This is my vision.
I have a big brother named Alexander.
He's in the first grade.
I'm so excited to be going to kindergarten at the same school next year.
I will ride the bus with my brother, just like all the kids in our neighborhood.
I also have a little sister named Helena.
I call her Baby.
She will be in kindergarten in two years.
Music is really important to me.
Incorporating songs into my [inaudible] has helped me communicate with my peers,
participate in class, and learn new things.
I'm really good at using my iPad, which also helps me to learn and play.
I'm a social butterfly, as I enjoy being around my peers, and I warm up quickly to new friends.
I'm funny, kind, silly, sweet, and stubborn.
And I care about how others are feeling.
I've received early intervention services since I was a baby.
And these special people play an important role in my learning.
I'm excited to have a new team next year when I become a kindergartener.
I will be in a regular kindergarten class with my services pushed in.
I learn best by being fully included >in school, and I look forward
to being included throughout my time as a student.
School is amazing.
I'm excited to participate in the social activities as well as the academic ones.
I want to join Girl Scouts, play sports, and have play dates with my friends.
I have a lot to give to others, and it is important to me to know that I belong.
I was diagnosed with Down syndrome prenatally, which brings with it some challenges,
but my disability does not define me.
I need help from my team to learn new skills to participate in school and outside of school,
so I can develop to my fullest potential.
I do not need to be fixed, but accepted for who I am.
My team will support me to have a full and rich school experience filled with dignity, respect,
friendships, and learning to the best of my ability.
As I grow up, I will have the same experiences as my peers.
I will become a productive member of my community in which I live,
know, I am loved, valued, and belong."
If you look at this vision statement, it certainly meets the test of saying
who Sophie is -- Sophia, I'm sorry.
Who Sophia is.
What she's about.
What she values.
What's important to her and to her family.
But it also does a very nice job of defining who, how, and with whom she's going to live,
learn, work, play, spend her free time, and build relationships.
In terms of the content of it, what do we think about it?
It doesn't matter what we think about it.
It's hers.
It belongs to her family.
It is what her family wants for her, and we're not here to judge it.
And neither are other people there to judge what yours might be for your son or daughter.
Once it's presented, it is what it is.
And it needs to be honored and respected.
Put on a pedestal and worshiped for its individuality and a reflection of your family.
So, that's pretty much my summary.
My presentation for this evening.
The vision statement is a critical, critical piece of planning.
And I hope that each of you will take the time to do it for yourselves
and begin the process of doing it for your children.
To bring that out and make it public.
Make it part of who you are.
And so that it becomes an elemental part of planning.
And rules planning going forward.
At this time, I guess we'll entertain some questions.
I do have a question here.
It showed up on the screen.
"Will these vision statements be available to us?
It gives a good blueprint, help to [inaudible]."
Yes, they will.
They are available as part of the actual PowerPoint presentation,
which is downloadable from the institute's website.
Correct?
[Kathleen Miller] Correct.
And we will be sending all of you that link to the website, and you'll be able to download
as well as a copy of Tim's PowerPoint presentation.
And, as well as, the grid [laughter].
Oh, hi.
[Tim Gruesel] [Inaudible].
[Kathleen Miller] Okay, here we are.
As well as the table that with as part of the PowerPoint,
where you can actually do your own vision statement for your child.
[Tim Gruesel] Correct, right.
[Kathleen Miller] Will all be available to you.
[Tim Gruesel] Absolutely.
And, again, we encourage you to go and take those things off the website.
Use them.
[Kathleen Miller] Yes.
[Tim Gruesel] They're tools.
[Kathleen Miller] Absolutely.
Are there other questions?
No, down. [Inaudible].
You want them to talk?
[Tim Gruesel] Yes, sure.
Let's let people talk.
[Kathleen Miller] [Inaudible]
[Tim Gruesel] Okay.
[Kathleen Miller] Hi, Allison.
[Allison] Hi.
How does this translate to my wanting to homeschool my child?
[Kathleen Miller] Good question.
It translates to homeschool.
[Tim Gruesel] [Inaudible].
[Kathleen Miller] Yes, yes.
[Tim Gruesel] Yes.
I mean, IEPs are still done...
[Kathleen Miller] Right.
[Tim Gruesel] ...with homeschooling.
So that, what I did -- would actually translate very powerfully,
in my opinion, to homeschool situation.
Which is, to put it out there, this is what we're going to do.
This is, we want to homeschool.
We want your son or daughter to learn [inaudible].
Spend time with kids and [inaudible] relationships and building.
So, I, in this particular way -- and the homeschooling is the context, I suppose,
for the goal, or for the vision statement, but it needs to be clarified and put out there
for others to understand that this is what you want for your child,
and this is what works best for your family.
[Kathleen Miller] Right.
It's your blueprint, you know?
And communicate with others and for your own family.
And for -- I would imagine, for your own use, as you homeschool.
[Tim Gruesel] Sort of think of it as a road map.
Where do you live, Allison?
[Allison] Cumberland County.
[Tim Gruesel] Cumberland County, okay.
So, you're in Cumberland County, out there in the middle of the state,
and you want to get to Philadelphia.
In order to get to Philadelphia, you sort of have to have a map, or you have to plug it
into your GPS, or however you -- you just can't get in your car and start driving,
because you might end up in Nebraska, for God's sake.
So, you might want to, you got to plan your trip to Philadelphia.
It's the same thing.
Defining where your child is going, in terms of homeschooling or whatever kind
of educational process is very important for other people to understand,
so that it becomes the foundation for all other planning.
[Allison] Okay.
Does that mean that I would create the own goals and how we met those goals?
So, would I still have to meet with public school people to have a team?
[Tim Gruesel] Actually, this is not my particular area of expertise,
in terms of IEPs with homeschooling.
However, we will answer that question.
And we'll...
[Kathleen Miller] We'll get you that information.
[Tim Gruesel] ...we'll get you that information.
An IEP is required for kids that are homeschooled,
as well as kids that arehomeschooled, or public school,
or in the parochial system, or private system.
So that the, that the specifics of homeschooling am not --
that's not my area of expertise, but we'll find out.
[Allison] Thank you.
Thank you.
[Tim Gruesel] Sure.
[Kathleen Miller] Other questions for Tim?
[Tim Gruesel] Let's see.
I don't see any others.
[Kathleen Miller] No.
Well. All right.
[Inaudible] any from yet, we do have some people in the room.
They're standing in the room.
Okay. If we have no other questions, what we're going to do is...
[Tim Gruesel] Wait.
[Kathleen Miller] ...wait, we do have a question.
Oh. Diane Perry, hi.
[Tim Gruesel] Hi, Diane Perry.
How are you?
You can talk to us, if you'd like.
[Kathleen Miller] We're going to unmute you, Diane.
[Diane Perry] Can you hear me?
[Tim Gruesel] Hi, Diane.
[Kathleen Miller] Now we can.
[Diane Perry] Hi, Tim.
Hi, Kathy.
[Tim Gruesel] How are you?
[Inaudible].
[Diane Perry] I was just going to mention to Allison that, even though you have --
no matter where your child's educated, the IEP team should always know
where you want the future of your child.
Where do you want them.
Not only just because you're being homeschooled, and that's where the academics are,
but there's more to life than just the academics, too.
So, where are they going to maybe do some of those other social activities?
Because I believe with homeschooling, there's also, you know,
different places that you can meet up with other parents,
or other students, for other engaging activities.
So, maybe that's part of the IEP, too, tha you want to make sure that they're doing that.
[Tim Gruesel] Excellent.
Excellent point.
Can she hear that?
Could the...
[Kathleen Miller] Can you hear us, Diane?
Yeah...
[Tim Gruesel] Allison.
Allison -- could Allison hear the response to that?
She could hear that directly.
[Kathleen Miller] Yeah.
[Tim Gruesel] Okay.
Okay, great.
Yeah. I mean, Diane's totally correct.
It goes to all the elements of a vision statement.
Not just the education piece.
Not just the recreation piece.
The living, the learning, the working, the playing -- how's the kid --
how's the child going to build friends?
Or relations, a network of friends and relationships.
And the fact that you want your son or daughter to do that, and that the goals wrap around that.
For homeschooled child, that might be a bit different.
But the vision that my son or daughter is going to have this network of friends that are going
to play soccer or they're going to go swimming or whatever is part of the vision statement.
And then, the goals figure out how to make that actually happen.
[Kathleen Miller] Great.
Wonderful information, Diane.
Thank you.
[Tim Gruesel] Thank you.
[Diane Perry] Oh, you're welcome.
[Kathleen Miller] Other folks know that Diane is the president of PEAC.
She is the Pennsylvania's Education for All Coalition.
So, she's one of our great collaborators.
[Tim Gruesel] And Diane is also extremely experienced at doing vision statements...
[Kathleen Miller] Yes, she is.
[Tim Gruesel] ...having done that for her own children for many years.
[Kathleen Miller] Yes.
Thanks, Diane.
[Tim Gruesel] Cool.
Thank you.
[Diane Perry] You're welcome.
[Kathleen Miller] Any other questions?
Okay. We're going to stop recording now.
And if people -- hold on a second.
Still here...
[Tim Gruesel] Don't go away, is near [inaudible]...
[Mira] Hi.
Can you hear me?
[Kathleen Miller] Yes, we can.
Hi.
[Mira] Okay.
Hi, I'm Mira.
My [background talking] -- can you hear me?
[Kathleen Miller] Yes, we can.
[Mira] My question is about transitioning to a parochial school.
My son's in public school.
He's in second grade now.
He went to a Jewish Day School for pre-Kindergarten
and it was a very good experience.
There was special ed support but they don't have OT and speech or social skills.
So I put him in public school.
It's been very good in a lot of ways but it's not what we want for him,
and he really wants to go to this day school.
My question is how do you -- how do you work with them to get them
to understand good best practices for inclusion?
Because they have a little bit of old fashioned views
and they know they're not obligated by IEP's.
And I want to take the best standards of what I know in the public school world in terms
of how we have the, you know, the rights for parents.
I don't know.
Do you have experience working with inclusion with parochial schools?
[Tim Gruesel] Well let me start there and we'll bring in some other...
[Kathleen Miller] Right, we're going to bring in Cathy Roccia-Meier
who is our program associate who's -- can probably answer this question best.
[Tim Gruesel] Is it Myra or is it Mira?
[Mira] It's Mira.
[Tim Gruesel] Mira.
Okay, thank you.
Mira, you have -- where -- is it your son?
You son?
[Mira] Yeah, my son.
He's nine.
He's in second grade.
[Tim Gruesel] He's nine.
What do you want him to be doing in the future?
What do you want his life to look like?
Do you have a sense of that?
Do you have it written out?
Do you have it planned out?
Do you have -- is it well defined?
[Mira] I have a vision statement but it's not as nice as the way -- the ones you presented.
So I like them as a blueprint.
It was more like a list of his characteristics, some of his interests.
He went from losing all his language at 18 months.
Typical Autism to being very successful with [inaudible] and all kinds
of interventions, and he speaks beautifully now.
He's very social.
He still needs all that kind of social skills support but he loves being around people.
He curious.
You know, he has certain interests like navigation.
Whatever. I -- I want him to be able to do what he wants.
He has in his mind he wants to be an architect.
[Tim Gruesel] Ah, okay.
Perfect. Perfect.
All right.
So he wants to be an architect.
All right.
People need to know that.
People need to know that hewants to be an architect.
I had a mom one time whose son -- and she showed up at my office one time when I lived
out in Lancaster County, she actually tracked me down at my office and showed
up at my office and she was crying her eyes out.
I said, "Why you crying?"
She said,
"Because they're -- they have my son in --
in a special ed class and I don't want him in the special ed class.
I want him included and he wants to be an auto mechanic."
And I said,
"Well, have you told anybody that?"
"Well, no."
Well, you know what?
You got to tell people that -- that he wants to be an architect.
She needed to tell people that he wanted to be a car mechanic.
Once she -- once she told people that they made that part of the vision, then supports
and services could start to be built around it.
Well to make a long story short he ended up at a VO tech program which --
and he was in an auto mechanic program.
And it wouldn't have necessarily happened if she would have let other people do things to him
on his behalf thinking they were doing the right thing.
But where it was totally inconsistent with what he wanted and what -- what the family wanted.
So you need to let people know that -- that --
that he wants to be an architect so that you can begin to plan things
that might help him to be an architect.
And you know what?
Maybe he'll never be an architect.
Maybe he'll be a doctor instead.
Maybe he'll be a train engineer instead.
It's the support that he gets along the way that allows him to -- to be who he wants to be.
And for you to be -- for him to be who you want him to be
as [inaudible].
Go ahead Cathy...
[Cathy Roccia-Meier] Hi, I see two points to your question.
One is the regulatory issues and you're obviously correct
in the school is aware they do not have to follow IDEA,
Individuals with Disability Education Act.
However, they do have to follow ADA.
So they do need to provide accommodations.
Reasonable accommodations.
Additionally, there's also -- if you were talking about some
of your related services, occupational therapy,
speech therapy, you and your school may or may not be aware
of something called [inaudible] participation.
And they are actually required to go to the non-public schools --
and this would be through your intermediate
unit -- to provide services.
I mean it's something that if you're not aware of and you haven't yet, you know,
completed you would need to have your school contact their intermediate unit
and ask for equitable participation to receive those services at your son's school.
Secondly, I would -- what I heard you say was that you would
like to see the school be more inclusive and you would like to have them think
about the way they're practicing and, you know, improve their --
let's just say the way they're thinking
about inclusive education to a more modern perspective.
My personal way that I would approach this is that looking at inclusion happens
and it helps all the students in a classroom.
So if they're finding ways to support your child, it will benefit the entire classroom.
And this is one way that you can show support for the school
and the other students as well as your child.
And when they find a way to address your child's specific type
of needs you can pretty much guarantee there's at least a handful of other students
that will have the exact same type of need that hasn't been met as of yet.
So it can help work with the entire classroom.
I think a lot of times some schools may just have a fear of what to expect
from children that are different.
But it is in a way the parents responsibility to educate them on this is my child's vision
and we want him to be includedand share in all the activities
with the other children and let me show you
some ways that you can do that to support him as well as to support all the students.
It will help your teachers support everyone in a way that helps everyone.
[Tim Gruesel] And going back to basics, if he wants to be an architect you got
to let people know that he wants to be an architect.
If he wants to play soccer you got to let people know that he wants to play soccer.
If he wants to hang out with this person, that person, you got to let people know.
We can't expect educators, therapists to know what the future holds in terms of --
of where you want him to be heading and where he wants to be heading himself.
Because he's getting to the point where it sounds like he's getting ready to make some
of his own his own decisions if he's not already.
And that's got to be -- that's got to be a part of the whole thing.
It -- it's where you got to start.
[Mira] Thank you.
I do have a couple responses to that.
He himself has let people know.
So his OT knows how much he loves to draw houses and he had difficulty
with drawing so she [inaudible] shapes.
So like the -- I think individually teachers and therapists are working with him.
I sort of have two issues.
One is the public school right now, that even though he's become
so much more high functioning I just had a reevaluation done,
I just got the report a week ago and they dropped his IQ by 30 points.
So like I have a whole issue that here he talks about being an architect,
he speaks beautifully, he has learning
issues and I'm trying to get them to help me find out working memory, information process
and instead they did an IQ test and they dropped his IQ to the 50's.
And I'm just like this is insane.
So I'm like, one side of me feels like I have to work on the public schools to get an IE
and get them more in line because they're going to change his whole track.
He's in an amazing class with full autistic support and now I'm afraid that if I kept him
in public school they're going to put him in a more restrictive environment
and change his whole track approach to life.
So that's like the one place -- I'm just bringing this up because if you can help me try
to figure out how to approach both I'd appreciate it.
So he has made them aware, I've made them aware.
It's not written in his IEP, that vision for the architecture so I'll work on that.
But they know who he is.
They know he's vocal and yet now they came up with -- the psychologist did all her testing
and all of a sudden he's a different kid than what he's presented in person.
I don't know how to deal with that with them.
And then with the day school he really wants to have a Jewish life and they know that.
I actually spoke at an inclusion conference last week.
So but they don't get the -- like, when you were saying ways
to be able to accommodate all the children.
So I
asked them, they said, "Well, we don't have an instructional aide."
He has an aide at the public school that's instructional and behavioral.
And I talked about Wraparound.
Wraparound can only provide, you know, [inaudible] behavioral.
So I don't know what to do with that piece that he still
needs instructional support and then he could participate in a mainstream and not --
I don't want him in a self-contained special ed class.
So do you follow my two sides that I'm dealing with?
And any comments?
[Cathy Roccia-Meier] I feel your frustration and I do suggest you do consider the IEE.
It is a large change in the IQ.
You might wish to -- it may be the way the testing may be conducted.
It may have not been a non-verbal test
where a non-verbal test might have been more appropriate.
I would definitely have that conversation.
I will say that again, regulatory -- the IQ level, the label of the child is not supposed
to pre-determine the type of program your child is recommended for.
And the placement is a recommendation that you as a parent must agree to.
So I do want to make sure that you're aware that you do have a voice when it comes
to the school district portion I will say.
Again with the private school there -- it has to be more of a relationship building conversation
that you have with them since they don't have the same requirements.
Again, as you said about the one on one instructional aide with behavioral health,
it would have to be done as to working more with on task,
off task behaviors and something similar to that.
However, if you looked at the way your goals are written for your behavioral health provider,
there are ways to also support education as long as it's written in a very specific way.
Which I really don't have enough details at this point.
I don't have [inaudible].
[Mira] Okay.
Can you comment on dual enrollment?
You talked about equitable participation, but then I could have him dual enrolled
and then have the services from the school district for the OT and speech?
[Cathy Roccia-Meier] The intermediate unit typically would be the one
to provide those services.
And I cannot confirm whether it would be a dual enrollment or
not but the terminology is equitable participation which allows the child
to receive services through non-public schools.
[Mira] Okay.
[Cathy Roccia-Meier] And that would be for related services.
[Mira] Okay thank you.
[Tim Gruesel] Any other questions?
[Inaudible].
[Tim Gruesel] Yeah, we can stop recording at this point and if anybody has any sort
of more confidential questions they'd like to talk about
we'll stop recording at this point and you can bring up, you know,
some very specific things if you would like to do that.