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May 20, 2009

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Genell Baun

I have a 10 year old son who is diagnosed as having epilepsy, bipolar (R/O paranoid schizo-affective disorder), OCD, chronic constipation/abdominal muscle spasms/enuresis, ADHD, tourette's syndrome, sensory integration dysfunction, and PDD NOS. Just days after his 8th birthday he was sent via emergency detention to Mendota Hospital in Madison after attempting suicide. He also had homicidal ideation (he thought he should kill me because I wasn't doing my job as a mom- to protect him from the "monsters"). Prior to his ED, he attended Barton school in West Bend where he received special education services. When being released from Mendota after 6 months, he was placed (without consultation or agreement from me) at Great Expectations alternative classroom in the basement of the West Bend school district office building. He was there with a few children that were several years older than he was (kids placed there for juvenile delinquency essentially). He was originally given no opportunity for physical activity throughout the day and we had to find where the law stated that PE was required even in an alternative setting and have DPI enforce it. It was not a therapeutic learning environment what-so-ever. In fact, the teacher had a bad cop approach and called the police for conduct that was a manifestation of his disabilities (the very reason he needed special education). Have you ever seen your 8 year old child leaving school handcuffed in the back of a squad car? It was a very difficult time for us. I had to hire a lawyer to have the charges dropped after an intensive psych eval that the county had to pay for. He is a kid who thrives on the firm and consistent yet loving approach. My son was secluded and restrained much of the school day and learned very little academically (especially last school year). He had 3 hospitalizations in West Allis that were the direct result of school triggered behaviors (on one occasion he TRIED to have himself arrested because he said that he would rather be in jail than in that school). That is when I withdrew him from public school after the hospitalization and started home schooling him (May of last year). I am home schooling him now as the district did not inform me that virtual school was a form of school choice for him when we had the window of opportunity for open enrollment in February. The school district refused to pay for day school at the Oconomowoc Developmental Training Center (which was recommended at discharge from Mendota and he was approved eligible for after an ODTC evaluation done while he was still in Madison). I went to the capital on WCCF advocacy day this year to promote my strong feelings on seclusion and restraint (especially in schools). Why is it that mental hospitals have more restrictions and reporting guidelines on S&R than our public schools? Where are the reporting and recording laws? I could not agree more that there is a large need for this S&R/PBIS bill to be passed into law. I understand that as parents we have the right to approve or disapprove of S&R in the IEPS for our children, but what option do we really have when school officials tell you that the behavior plan needs to have either the agreement to allow S&R by the teachers, come to pick him up each time, or agree to police intervention and have your child tied up in the juvenile justice system? You treat a child like a criminal and THEY WILL ACT LIKE A CRIMINAL. My son had an IEP, but the school did not follow through with focusing on the strengths to help build on the weaknesses or focus on triggers to help avoid the escalation. Instead, they seemed to focus on punishments. They took away meals when they felt his behavior was unacceptable. When I brought this to the attention of their superiors, they then allowed him to eat, but off the floor. They isolated him from people. He spent most of his day in a small cubby from floor to ceiling with a opening that the teacher's aid blocked while he was in there. They tried sending his school work home for me to teach him as "homework" when he refused to do it for them during the day. They developed a system for a while where they would CALL me every time he acted out (and said it was there new policy). He was wetting himself at school and one day he was made to ride home in the van with the wet pants (their thinking was that he would be embarrassed and not do it again). He also pooped himself one day and the teacher told me that he did it on purpose. She made him write me a note in her words saying that he did it on purpose and then made him throw the clothes away. This after she knew that he had a history of both enuresis (for which he saw a pediatrician) and bowel problems (for which he saw a gastroenterologist and took medication). I personally saw them drag him across the room on the floor to "put him in time out". I saw them pin his leg under a carrell and I heard him say that it hurt, but they continued to do it and said he was fine. I also heard him say that he could not breathe and they said that if he could talk, he could breathe (he has a documented history of anxiety and panic attacks). Another time he was hyperventilating and the teacher told him that it was good that he was making more of an effort to breathe. I asked over and over for them not to use prone restraint, but they used it enough that it left a scar on the front of his shoulder. He states that on one occasion an aid held him down with the heels of her shoes digging into his thighs and on another occasion they used pain association to lift his hands up his back higher and higher as his behaviors escalated. He did report the incidents to his counselor and showed the bruising on his arms/legs and marks to his head from pushing his face down to the ground. The time out area was not safe. It did not provide any padding for protection. At one time there was an electrical outlet in it. Another time he was left unsupervised in there long enough that he was later found to have written all over the walls. I understand about No Child Left Behind and I think it is great that special needs kids are integrated in our schools. I think it helps both the general population of kids as well as the kids with challenges, but a regular classroom is not for everyone. My son requires a low key-low stimuli classroom with positive behavioral interventions and focus on triggers/intervention vs punishment. He needs a small group of kids his age to help him learn social skills. He needs a more regulated sensory diet (not just at home but at school as well). He is entitled to FAPE, but my interpreation of appropriate and theirs is VERY different. I got CESA 6 as well as WI Family Ties involved in advocating for me to help my son, but could not stand to see him endure the post traumatic effects of that classroom setting one more day. When he was at Mendota I felt the need to enlist the help of WI Family Ties to help me fight for my rights to family centered care and I did not give up until that was achieved. I feel as though by home schooling him now, I have given up and now there will just be another child/family with the same frustrations we had. Please tell me what more I can do! I do have 3 other children in the West Bend school syste, right now, so I have been afraid that speaking up may very likely make things difficult for them. I know that nobody would admit to doing these things. I am sure we will be called liars, but maybe if we speak up, other people will then feel more comfortable to come forward as well. I have read all the DPI excuses that they are already taking special education funding from the general education pot. I also know that Obama earmarked more money in this new budget for soecial education funding. When asking Pat Strachota what the state planned to do with that money, she more or less replied that they were going to hold onto it for now as it would be all they are getting for 2 years. There is a huge unment need in our special education system and we should just sit and wait for what our children need because it's all there is for the next 2 years? What about now? What are we going to do about this now?

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