Hi Folks, I need SERIOUS ADVICE I belong to ABLE, we are fighting Isolation rooms in our school

[Robyn66]

Last edited Sun Sep 9, 2012, 07:49 PM - Edit history (1)

HI,
A chapter of ABLE has started up in our district because for YEARS there has been poor treatment of kids with disabilities, primarily of kids of kids on the spectrum.

Isolation rooms have been used and abused at least since my 17 year old with Aspergers was in 1st grade . She was shut in the room to do schoolwork supposedly to eliminate distraction. The result of this is claustrophobia she has until this day.

Most recently a severely autistic child was put in to an isolation room (oh I'm sorry, TIME OUT room) where he beat his head against the wall repeatedly. There was no padding on the walls because they have no actual room set aside, according to them they just "clear out a room and make it safe"

There are many kids with many other similar stories. THe special ed dept is a nightmare!

We tried to get the super intendant of school to come to a meeting and he wouldn't come citing HIPPA, after many attempts we finally got to go to a School committee meeting ostensibly to tell our stories but when we got there we found out no one would be allowed to speak about their experiences with the district we could only listen to the presentations.

They showed this video that was clearly propaganda with smiling patient aids working with all of these autistic kids. It looked straight out of stepford, At the end was this woman saying that the district had been wonderful for her son and he had made amazing progress.

Well there was nothing but crying coming from the audience. My daughter was crying and saying (how can they just sit there and lie like that) She was sitting there FACING the people who did things to her. Just about everyone who had bad experiences with the district was absolutely in tears and the school committee NOTICED. We asked for a recess after the video.

We calmed everyone down and were about to leave because they obviously were not going to allow us to speak which was the agreement. BUT when we went in, their lawyer said that because the District used parent testimony to support their side, we had to be allowed to speak. ONE FOR OUR SIDE!

So we got to share what happened to our kids and the trauma and the therapy they have all had to go through and the kids that have been pulled out of the district and are still suffering from treatment by the schools.

There is no district policy on the use of these "time out room" they insisted on calling them. We referred to them as what they were-ISOLATION ROOMS Their lawyer said no child s ever left alone in a room, then my girl got up and told her story.

My brave girl faced these people and told her story about what she went through to the school board and spoke for all of the kids who couldn't speak because most of the kids affected are non verbal.

By the end of the meeting the school board had some strong words for the special ed director and promises were given for parent forums and giving parents input in hiring a new special ed administrator and it looked like we actually made some progress.

UNTIL WE FOUND OUT WE DIDN'T
Turns out they hired the Special ED administrator without including with parents as promised and this lady has no use for parents or parents groups.

All of a sudden we have this list of parents forums that look suspicious and for those of us familiar with the district and our tactics .

My thought is they have been able to intimidate us, keep us separate, bully us and beat us down for years and I think they think they can still do it only it will take a little longer this time.

My only thought is that we need to get bigger, like have a high profile person adopt us. Our ABEL chapter is brand new and we have no gravitas right now. I am thinking I want to get ahold of the dem candidates for Gov, Senate, Congress on the state and local level to see if they will adopt us and bring attention. We need someone to help us convince the school department that we are not FUCKING AROUND! I guess what I am looking for is a Community Organizer who knows how we can help us put the fear of god in to them.

So I am looking to you for help. If you want to contact me via e-mail that is fine I just want to be able to report some ideas back to my chapter. I am in Cheshire County NH. I know there are people IN politics who post here. I would love if this could get seen by any one in NH or National politics. We are really in need of some help and its not really us its autistic kids who have been mistreated and cant speak for themselves.

Thank you so much
Robyn

[enough]

1. There was an article about this in the NYT yesterday.

http://www.nytimes.com/2012/09/09/opinion/sunday/a-terrifying-way-to-discipline-children.html?_r=1&hp

A Terrifying Way to Discipline Children
By BILL LICHTENSTEIN
Published: September 8, 2012

IN my public school 40 years ago, teachers didn’t lay their hands on students for bad behavior. They sent them to the principal’s office. But in today’s often overcrowded and underfunded schools, where one in eight students receive help for special learning needs, the use of physical restraints and seclusion rooms has become a common way to maintain order.

It’s a dangerous development, as I know from my daughter’s experience. At the age of 5, she was kept in a seclusion room for up to an hour at a time over the course of three months, until we discovered what was happening. The trauma was severe.

According to national Department of Education data, most of the nearly 40,000 students who were restrained or isolated in seclusion rooms during the 2009-10 school year had learning, behavioral, physical or developmental needs, even though students with those issues represented just 12 percent of the student population. African-American and Hispanic students were also disproportionately isolated or restrained.

Joseph Ryan, an expert on the use of restraints who teaches at Clemson University, told me that the practice of isolating and restraining problematic children originated in schools for children with special needs. It migrated to public schools in the 1970s as federal laws mainstreamed special education students, but without the necessary oversight or staff training. “It’s a quick way to respond but it’s not effective in changing behaviors,” he said.

MORE AT LINK ABOVE

[Spazito]

2. Here is what a good friend of mine did to raise community awareness and achieve change...

She wrote letters to the editor about the issues, attended every board meeting and, when possible, had a list of questions ready if there was a public question period on the agenda. She pored over the Special Ed portion of the budget, the board policy AND procedures, the procedures are key, with regard to Special Ed students. She also familiarized herself with the policies of the Province (in your case it would be the State) and utilized every bit of data available to make her case. She never gave up even though those in control tried their best to shut her down.

Make presentations to City council, Social Service agencies, any organization or agency that involves children. Grow their awareness, teach them about the issue and how it relates to their cause. It works, really it does. Broaden your support base beyond the narrow strictures of the education system.

It took time, longer than it should have, but she was able to grow support, grow the number of voices demanding change and it resulted in major changes in the District's Policy and procedures to address the issue.

[Robyn66]

4. Thank you-that is where we are in the process now

What I am hoping to do is be able to take advantage of the election year and have candidates adopt us because we are fighting for something that is a huge problem in this country and it is often invisible. Talk about justification for health care reform! THank you !!!!

[Spazito]

6. Another way to raise awareness is to have someone well versed on the issue...

become a candidate in the next school board election. They may not win but will have an opportunity to speak to the broader public about the issue, the needed changes in the system.

Edited to add:

I was just thinking of a way to focus attention on how the board and it's administration is trying to shut out the voices and this may be a way to phrase it:

'Not only are our children being put in isolation by this District's decisions, they are trying to put our voices, our rights to address this serious issue, in isolation. We are NOT going away, our voices will NOT be isolated.'

[Robyn66]

12. I LOVE THAT Thank you!

I am actually planning on running for school committee this year. I am fairly well known in town and well thought of for the most part. I will definatly have a platform of special needs and ending the us of isolation. There are so many problems from unqualified aids, to not following IEP's it is really bad.

[Spazito]

28. You're very welcome! I am glad you are running!

That is very good news, I wish you all the success in your fight, it is one that we all need to keep fighting for all the children who are being denied their equal rights to a quality education.

[Robyn66]

3. I will have to figure out how to post our news articles so people can see the whole thing (nt)

[IdaBriggs]

5. Maybe start a petition at Change.org?

I would sign it.

[Robyn66]

13. I never heard of that

I will go take a look and bring that suggestion to my meeting. I would love to have everyone sign it if I get the ok to put it pout here. I didnt know such a thing existed!
THank you!!!

[Odin2005]

7. I have no words.

[Robyn66]

15. Hello dear!!!

Its beyond words. Kids SURVIVE that special ed department at the elementary school level they dont thrive in it. THat is why we are finally taking a stand. They have been very good at keeping us apart but now that the parents know eachother we are a team, and they havent had that before. Unfortunately they still think they can beat the crap out of us or make tons of promises the have no intention of keeping and then blowing us off while the children suffer.

[DonRedwood]

21. c'mon man--you probably have more insight than anyone can imagine

any suggestions for the lady?

[DonRedwood]

8. ASK FOR CAMERAS TO BE INSTALLED AND YOU WANT THE DATA THAT SUPPORTS THE USE

of any type of time out or physical holds.

There should be a behavior plan as PART of the IEP. The parent has to agree to that. If the district over rules the parent the parent should IMMEDIATELY demand the copious data the school MUST have legally been taking to support any of their decisions.

They can say, "Jr is doing this ______________" But if they don't have data to show that they have tried everything else first before going to such an extreme then they are out of line.

Schools are supposed to base all of their decisions on data. It is the foundation for defense in any lawsuit. Every time I find a case of the school pushing a parent I've given them this advice and it has worked in their favor every time. The school must pretty much stop everything you don't agree to until they have data to show it is necessary. If they have already implemented things without your permission and without the supporting data, they pretty much have opened themselves up to litigation.

[Robyn66]

16. Thank you very much

I will be printing your response out and distributing it out to our group. This is something I definately want.

We have been told that they try and communicate as much as they can but sometimes things just fall through the cracks but most of the time they get it right.

THe communication thing is HUGE we have NO clue what is going on at school. At one point my daughter had two communication notebook. She was supposed to have one that went back and fourth so that the school and home could keep informed of what was going on, if she was having a good evening. And I could here from school how things were going.

One day she came home from school with a different notebook on a day she had a substatute aide and she said to me "that isnt the one I am supposed to bring home!"

We had a very volitile meeting because they broke the law with that one but it was all "it was a mistake, you dont really understand, it will never happen again" This is what always happens with these people.

[DonRedwood]

23. well, there are two sides to that one....

School districts usually want only the teacher writing notes home. At the end of the day, as I'm trying to get everyone ready to go home, finish up, get changed, etc. etc. I am also trying to get 12 notebooks ready to go home.

If I even write just 2-3 minutes in each book it can take half an hour.

It is almost impossible to get half an hour free at the end of the day to do them. I often end up staying late and calling home because I couldn't get to the books. It is very frustrating sometimes since I have very good relationships with my parents and I want to continue that.

If I might coach you a little though--no matter what, try your best to be super nice. Support the teacher any way you can and save your battles for the supervisor. I'm not saying give in--but I can pretty much guarantee you the room is understaffed, the teacher is caught in a battle of spending their time with their students or doing paperwork/letters/forms. My job, to be successful, requires that I do almost all of my paperwork at home at night.

Keep that in mind when you go in for your meetings. Like Bill Clinton, I am a fan of arithmetic. If you have 15 students, that is 4 minutes per student, per hour. If mom wants a five minute note and the student needs five minutes of attention to get through a rough patch...well... what is a teacher to pick? The note that makes them look good or the attention that their student needs? As it is I take my lunch and breaks AFTER the kids leave at the end of the day so they get every minute of my time that is possible.

[Robyn66]

32. I understand that but

the notebook that was in her backpack had notes in it that bore no resemblance to the notebook I got home normally. I compared the dates and where the one I got would say her day was fine the one that stayed at school said she tried to choke herself. There were many entries like that.

I always supported the teacher with all my heart and patience. In fact I gave them the benefit of the doubt to the detriment of my daughters health. My daughter was telling me 24/7 that the teachers were mean, that her aid was mean, that they wouldn't stop the bullies from torturing her. I would call and stop by like they suggested and the teachers would say, these kids say all kinds of things. And when she was scratching herself until blood ran down her legs and biting herself until she brought blood the teachers would say "she never did that around us" "maybe there is something she is upset about at home" then there were the people who I didn't know who came up to me in the grocery store that barely knew me of and said, "I was at the school and I really didn't like how your daughter is being treated, you should really look in to it". This happened several times with several different people. When I went to the school they said "Oh they just don't know what they are seeing, everything is fine, your daughter is very happy at school" When I begged on my knees to protect her from bullies they said "well she has to learn" and left her to the wolves, a child with ASPERGERS.

So finally out of desperation, I got an independent observer in to see what was really going on and to my horror everything my little girl said was TRUE and I was taking the word of the teachers over my little girl for her entire elementary school career.

So my daughter was broken mentally and it was my fault because I didn't take action sooner. I was lucky because I had an amazing person to tutor her for the last 6 weeks of school and her middle school autism specialist worked a miracle and made her a student who loved learning and after being on the honor roll for ever quarter in middle school she received an award from President Obama in 2009.

I wish she had a teacher like you when she was in elementary school. But I want to do everything I can do in my power to make sure no other child has to go through what my daughter did. It is still going on, children are still being mistreated due to lack of training or funding or whatever reason and I have to make sure it stops

[Shiraz]

9. I have a son who is in the severe range of autism:

Actually he has fragile x syndrome and is non-verbal. He is 22 and in all the years of school I didn't even know they existed. I know lucky us. When I started touring the day-hab programs available in our community I was informed of these types of rooms and was told they are phasing them out because of the new methods of dealing with outbursts. They are rarely used now and only for someone who is so out of control they would hurt someone else or themselves. Sometimes the individual requests these places themselves so they can decompress because it is usually caused by sensory overload. They are not allowed to be in there more then 15 minutes and that is usually enough time for the individual to calm down. These are adults now not children. Have you thought of contacting Tom Hartmann ? He would be someone who may have advice because he and his wife used to run a residential school for children with disabilities. Children who were considered too difficult to teach in regular school districts. He does fund raising on his radio show now and then and I have donated to it. It is called New England Salem's Children's Village. Good Luck .

[Robyn66]

17. I dont know Tom Hartman

but I will look him up. I want to have every possible option on the table. THis is some very helpful information.

[patrice]

26. It's a different spelling, Thom Hartmann. He'd be a good source of info & public relations. Link:

http://www.thomhartmann.com/

[Robyn66]

33. Whoops Thank you!!! ( nt)

[patrice]

37. Thom really is one of the good guys. I bet he will be interested in your story. Good Luck!

[immoderate]

27. Thom Hartmann is a DUer.

Look here: http://www.democraticunderground.com/?com=profile&uid=197528

--imm

[Robyn66]

34. GREAT TO KNOW

[leftyohiolib]

10. home schooling?

[Robyn66]

18. A lot of kids on the autism spectrum are home schooled

But that is hard.

Most parents cant afford to stay home or really need the respite time. Lots of kids are sent to private school too but again its cost prohibitive. I would have sent my daughter to private school but there was no way we could afford it,

[DonRedwood]

24. :0( these guys need communication experts, OT, PT AT....

homeschooling often means these guys lose out on all those things that are necessary for them to succeed.

I highly frown on home-schooling. The parents need the breaks as much as the kids.

[Corgigal]

11. start here

http://www.drcnh.org/specialedadvocates.htm

My son has central auditory processing disorder and I had a special advocate throughout his school years. Who was free, by the way.
My son is now attending Berea College in Kentucky and doing well. I have no idea why parents aren't aware of these advocates out there but after one year of trying to work with the school district (who just thought I was another dumb ass parent) then I raised the ante. Schools took my sons educational experience seriously and he ended up on the honor roll all through high school.

If you need anymore info contact me.

Gale

[Robyn66]

19. Thank you so much!

Your input is incredibly valuable!!!

[Ilsa]

14. On behalf of my family

And autistic child, I thank you for your passion in trying to get something done. Please don't give up. I don't have any advice, though, beyond seeing a lawyer, or getting parents to hire a lawyer.

[Robyn66]

20. We are all going down a hard road together

The so called professionals are supposed to be helping our children grow not scar them for life. Unfortunately most of us cant afford a lawyer and are stuck trying to figure out how to do this ourselves. THank you for just being there!

[Poiuyt]

22. Sadly, home or private schooling is what many families do when the have a child with special needs.

I work as a dyslexia tutor and many of my students seek out alternatives because they aren't getting what they need from the public schools. The public schools make the qualifications to get into an IEP tough because of their budget. Plus teachers have never received instruction on how to handle these students. Unfortunately, the public schools aren't going to change. It's a terrible situation and the students are the losers.

Have you looked into financial aid from any of the private schools in your area? And I know it's hard, but home schooling might be your best option. Check and see if there's a home school support group in your area. They may be able to give you some tips on if it's do-able or not.

Good luck.

[Robyn66]

25. That would be fine if the school dept was truly doing its best and was just under funded

Fortunately, my daughter survived elementary school. I pulled her out 6 weeks before the end of 5th grade and had her tutored for the rest of the school year. For some reason Middle School and Highschool had very good Autism programs so right now she is fine. In fact, she is in the National Honor society and will be graduating in 2013.

I have joined with the other parents who have little ones who are still going through elementary school and pre school which is where all the damage seems to be done. Nothing anyone seems to be able to do makes things better so we are taking it upon ourselves to make some noise and force the issue.

[chknltl]

29. If you have not done so already, contact Thom Hartmann

http://m.thomhartmann.com/contact

Thom may be able to help and quite likely will direct you to those who can help. Be sure that he gets the story as you have presented it here. Thom is both quite knowledgeable about and sympathetic to children with special needs and to those who would teach them. Thom Hartmann will want to hear your story.

Thom is a fellow DUer too. You might also try contacting him by sending a message to his DU inbox. I strongly recommend doing that as well as trying to contact him via the link provided above.

Good luck.

[obxhead]

30. k/r

[liberalhistorian]

31. I'm very sorry your aspie daughter has had to deal with

such a horrible district. I raised a son with Asperger's (he's now an adult) and we were very fortunate to have a good school district with few problems. The few problem teachers, and problems, that we did have were quickly and effectively taken care of by a responsive and concerned administration. But I know that that isn't the case at all with far too many districts, and, even in my son's district, I still had to maintain vigilant advocacy for him many times. Fortunately, my mother was a teacher and she knew how to effectively communicate with both educators and administration.

Have you ever heard of Partners in Policymaking? It is a nationwide program; each state has its own branch with its own program. A class of between 20-25 people is chosen each year and they have seminars one weekend per month for six months and then "graduate" from the program. It's for both people with disabilities, known as self-advocates, and family members of those with disabilities. They learn of social, cultural, political, economic, educational, legal and legislative issues related to disabilities and disability advocacy and they learn how to effectively advocate in education and in all political levels, from school board to other local government to state legislatures and even federally. It's usually run by the state's Council on Developmental Disabilities and/or state advocacy services. Try to find local or state representatives of the program and get needed information from them, they will know what you should do and how you can best do it, especially based on your particular state and its policies and culture.

[Robyn66]

35. THank you so much!

No I was unfamiliar with that. I will be doing some homework tomorrow!!! I think this is terrific!!!

[sarcasmo]

36. What's next, water boarding?

[FLPhyllis2012]

38. Families Against Restraint and Seclusion

Hi Robyn,

I tried to reach you at the ABLE office in NH but no one returned my call. I work with APRAIS/TASH and may have some help for you in your area. Do you have an email account where I can private email you?

Regards,

Phyllis
Families Against Restraint and Seclusion
http://familiesagainstrestraintandseclusion.blogspot.com/

[Robyn66]

40. Oh I am sorry I am not WITH ABLE I am a parent belonging to a chapter of Able

in southern new hampshire. I appologize for confusing you. Yes I would love the information my e-mail is [e-mail]

THank you so much!

[renie408]

39. Jesus H. Christ on a crutch, what the hell are we coming to?

I have no words. This is insane.