... Phyllis Musumeci, founder of Florida Families Against Restraint and Seclusion. Musumeci, a Palm Beach mom, recently traveled to Washington, D.C., to testify before Congress about the need to ban the use of seclusion and restraint on children in schools. She spoke with Jeff Solochek about the issue.

Talk about why you were in Washington testifying before Congress.

Well, I went to Washington because my son was restrained in school and put in seclusion, and I didn't know about it. The seclusion I knew, but I didn't understand at the time what was really going on. They used to drag his desk out in the hall and leave him by himself. That was almost every day when he was in seventh grade. The restraining I didn't know about. My son's behaviors started changing. His personality started changing. ... He went from a happy little boy to a very unhappy, angry little boy and I didn't know what was going on. That happened over a period of time, like about one year. And so at the end of seventh grade, he just flipped out one day when I picked him up. ... I was scared.

It was about four days before school let out. I called the doctor immediately and brought him in, and he suggested I take him to a psychiatrist. ... I had some tests run on him and then about maybe a month or two later I brought him back to the psychiatrist and he was put on some medication to help with his anxiety, aggression, depression, which he had never had before.

You found all of this tied back to the school?

Well, I can only assume that this was the reaction to what they were doing to him.

Is that when you became an advocate, or an activist?

Yes. What happened was, the summer after school it took a long time. He
basically stayed home and recuperated during that time. ... I had to
quit my job, stay home with him. When eighth grade started I told the
principal he had been sick and we didn't know what was going on. So we
eased him back into school. I mean, I knew it had something to do with
school. It was obvious. He didn't want to go to school. He would cry in
the morning and tell me, 'No school. No school.' He would get up in the
morning and get dressed and then get undressed. He wouldn't eat
breakfast. He wouldn't get in the car. I never had that problem with
him before. He used to like school.

So about a month after school started ... we eased him back in. And
probably within two months it started all over again. ... He would cry
all the time. He would throw tantrums. He would be aggressive if I
tried to make him go to school. So we pulled him out and decided to
home school him.

How did you find out that this was not an isolated incident? I read parts of the report ("School is Not Supposed to Hurt,") that you were helping to present, and it turns out this is something that is going on nationally.

Well, what happened was, I didn't know about my son's issues, and
somebody asked me to pull a report. Or, not a report, their logs, their
PCM restraint logs. ... I believe it stands for personal crisis
management. ... Personal crisis management uses prone restraint. ... So
I did what they said. At this point he had been out of school over a
year by now. He still was recuperating. He had phobias that he never
had before, like, he didn't even want to go outside, let alone get in a
car and try to get him to go to the doctor. And I did request the logs.

Before that, he did come home with bruises quite a few times. I didn't
know what was going on. His verbalization was not good. He has very
poor expressive language. ... And any time he had bruises I asked him
what happened. 'I fell down.' So let me jump ahead to the log sheets.
They sent me copies of all the log sheets for seventh grade and just a
few weeks that he was in eighth grade. And when I saw them I started to
cry. I just was astounded at what they had done to him, how many times
he had been restrained. And they put a note in there that said the
sixth grade log books are missing. ...

And you never knew about any of this?

No.

Is that the case with most parents, that they don't know about this?

I am guessing that a lot of parents don't know about it.

What do you advise them?

What happened was, I started looking into it and I got onto a behavior
committee at school. Because I decided that something needed to be
done. But the district was trying to tell me that my situation was
isolated. And I just thought, how can that be? First of all, I didn't
even know they were allowed to do this to kids. I didn't know what PCM
stood for, so I looked it up. ... I was like, Oh my gosh. I was
shocked. And I thought, they do this to kids? So I just started
checking around and sending emails to support groups. And little by
little, people started popping up. ... Now I've got about 78 parents
around Florida that have contacted me in one way or another about
restraint and seclusion in their school.

So how does this tie in with the national report? Because they're calling for an end to this nationally in Congress, right?

Right. I got involved with the National Disability Rights Network,
asking them to help out.  ... And every time I would see a new article,
I would forward it to them. Every time a parent would contact me with a
comment about their child being restrained, or I would hear from out of
state, because I have a national blog site,
I would jot things down, get their permission ... It's astounding.
Parents come from all over. Not just Florida. So they had been working
on this issue anyway. This just gave them reason to push it further. So
they invited me to come to Washington to speak before a press
conference and I guess Sen. Dodd (shown with Musumeci, image from Palm Beach Post)
has been spearheading this. They had three families from Connecticut
come and testify, and me from Florida. And I'm hoping they will do
something on a national level. That's what this is all about. ...

What about in Florida? Is there anything that can be done at the Florida level? Are the laws there?

No, there's  no laws. I am working on a bill with the Florida Advocacy Center and the Florida Developmental Disabilities Council. ... And we're working on a bill just for Florida, to see if we can get something taken care of here.

Do you have a sponsor?

I'm not sure. I thought we had one, but now I'm not sure. I'm waiting
for him to get back with me. We tried to get something through last
year. The DOE said they were going to come up with something and we
didn't need a bill. They did come up with something, but all it really did was legalize what they were doing.

Which wasn't what you were looking for at all.

Which wasn't what we were looking for. We don't want to legalize child
abuse. So we're hoping that our senator will work with us to move this
bill forward. If the Department of Education and the school districts
feel like they're not doing anything wrong, then there shouldn't be any
problem with putting this into a bill.

And the bill you want would say what, exactly?

Well, the one thing is, prohibit prone restraint. In my county I have
documentation that Rep. Bucher pulled for me last year that they're
prone restraining children in pre-k. Pre-k. That's three and four years
old. And that's not needed. That's not necessary. We have positive
behavior programs that are supposed to be the way to go for our kids.
It's scientifically proved that positive behavior works as opposed to
methods like restraint and seclusion. Restraint and seclusion is
traumatizing our children. They must have seen what this was doing to
my child, and yet they continued doing it to him. And I hear the same
story from other parents. Usually when parents call me, I don't tell
them my story. I listen to what they tell me because they want to
unload their story  and talk to somebody. And I am just hearing the
same story over and over and over. ...

What do you advise parents ... who maybe think they have a problem but they're not sure?

First of all, I tell parents not to jump. You know, don't go into
thinking all schools do this. Because they don't. Especially with
nonverbal children, I tell them if your child is coming home and you
see significant behavior changes and personality changes, that's when I
would be suspicious that something is going on at school. ... Then you
need to go into the school and talk to them and find out what's going
on. The problem is, sometimes the schools are not honest with you and
don't tell you these things. And that's not right. Parents have a right
to know.

If the school won't tell you, are there certain things you should ask for to set the record straight?

Well you should. But you don't always think about those things. Like
when my son came home with bruises, I never thought someone was
restraining him. I never knew it existed. So my mind never went there.
Parents today are a little bit smarter than I was when I started out
doing this. Because today if their child comes home with bruises on
their bodies, they're taking pictures and dating them and documenting
it. I think that's good. I didn't do that. Because I never, ever in a
million years thought anything like this was going on. ...

What I would suggest is to try to talk to other parents and work
together. Contact your legislators and talk to them about this problem.
You have to educate your legislators, because they don't know this is
going on. If someone would have told me this was going on four years
ago, I would have said, 'Uh-huh. Yeah, sure.'  Sometimes, if it's not
happening to you, No. 1, it's not a problem. And No. 2, who's going to
believe a crazy story like that? ...