Wednesday, May 20, 2009

Restraint--Destroyed Becca's Trust and Schooling

(Becca in 2004 a whole 42 pounds, 42 inches and the size of a 5-6 year old with Noonan Syndrome, Cardiac Issues, Bleeding Disorder and Low Muscle Tone.)

Why would they have to restrain someone this tiny? CRYING
and she would never trust again after the schools left bruises, bruises heal, but trauma and trust doesn't.

At long last, the issue of seclusion and restraint of children with disabilities is coming to the forefront. I doubt taxpayers and many are aware that for some children with disabilities schools are not a safe place, or a place that they can learn. For some children school can become a place where they are traumatized and for some a very unsafe place to be. We will control them mentality. Did you know that some schools put children in closets of have specially designed boxes or timeout rooms where children are forcibly taken when they do not comply? Did you know that children have died when staff members who are often untrained or mistrained take down a child to restrain them?

I have long understood the ramifications of this practice. I understand that a child can be a danger to self or others and they cannot control themselves and one must intervene. I had to place my adopted daughter in the psychiatric hospital because she was so out of control that for her safety and the safety of others she needed someone to control her. She was stuck in the state hospital because in order for her to go to a residential facility they could not use restraint and seclusion because of Medicaid rules. My question then was how could schools use it when the residential facilities could not, only hospitals in the last resort.

Over the years I have advocated for children whose parents were concerned and often distraught when their children were coming home from school with unexplained bruises, but if a parent sent their child to school with bruises we would be reported to Child Protective Services and face losing our child. But schools had carte blanche on "how to handle" our children.

I have heard horror stories from across the country of children brutally restained, or at tied in chairs or even killed because of staff not knowing how to safely restrained a raging child. They always say the child was a danger or biting staff. But often times it is the lack of adequate supports, supervision, and untrained people working with a child with very different learning and emotional challenges.

This week a grass roots movement of parents who have long been asking for changes and hearings on the issue has gained National Attention. Last night many news stories carried news of restraint and seclusion on their networks. There were meetings in Washington DC on this issue.

For me it is bittersweet, for years my Becca has been home, long traumatized by her bout of misunderstanding and the trauma of being restrained by school personal her only offense, crying. Crying because they did not give her the supports she needed after denying those to her at her fifth grade transition meeting, sending her to a middle school classroom segregaded from her able bodied peers because they refused to give her a paraprofessional. To save money she had to be moved with lower functioning peers in a resource classroom where they could share staffing and she would be maintained and not challenged. They would not give her her own aid which she had had for all her school years. They said she needed to be independent.

The middle school paraprofessionals were never trained on Becca's special needs, and her inability to talk when stressed. (Paraprofessionals did not have to have any sort of degree or even at that time background checks). I was not allowed to meet with them to explain her significant needs. They were never given a copy of her needs identified in her Individual Education Plan or the two pages of addendums on what they needed to do to help Becca. They were not attached to the IEP after the meeting and lost between the elementary school and the middle school. They did not follow the plan and Miss Becca at 12 was only 42 pounds and the size of a first grader. Becca had just been diagnosed with Autism along with her Noonan Syndrome and the noise and lights of the schools coupled with her medical fragility and fatigue meant she always had had a shortened day at school. She had never had a full day except for maybe in September and May when she was healthy and at her best.

The IEP team denied adding autism to her IEP and anything to do with her sensory needs. They disagreed with the treating doctors, the psychologists, the neurologist and the new over $2000 neuropsychological testing which identified many needs for Becca. Between our insurance and our family we paid for the testing so we could plan to meet her intensely complicated learning and medical needs.

They moved Becca to a new school, without listening to the medical/psychological treating professionals because schools know best. Did you know that the educational rights of special needs students specify that the schools only have to consider the doctors orders, not enforce them?

Teeny Tiny Becca ended up in a pull-out classroom where one or two hours of day they went to a class with able bodied children. The "SPED KIDS" ate at a separate table between the sixth graders and eight graders coming in and out. Becca got in "Trouble" for talking to her sibling and his friends for leaving the table. The para would force her to eat, even with her swallowing issues and the therapists warning to never force a child who is learning to eat to eat. Her feeding pump nighttime nutrition will take care of that. Eating for Becca hurts, she chokes, foods dump into her gi tract because of abnormal anatomy, plus her mouth is often full of sores from her chronic thrush and infections.

In the classroom, most of these children had lower iqs (in the 60's or lower) and were more delayed then Becca. Becca was in a gray area where she was not quite up with her peers but behind because of all the missed work from being so ill most of her life, and the lack technology to support her severe learning challenges. Becca's hands do not work, she cannot print well, her motor programming challenges with her visual spactial issues means she needs tools to use to learn and keep up with her peers. Becca was on the computer at 2 in Minnesota and we were told that technology was going to be her best friend. As time went on the IEP team fought us on the use of technology as they did not have anyone who would work with her individually to teach her to impliment its use. Then there was the favorite excuse, it would make the other students feel bad if Becca could use the computer that was placed in the classroom for her use. The only one who used the computer brought in for Becca was the teacher to make her job easier. Sometimes the whole class could play on it, but it was not used by Becca to be mainstreamed or to help her.

Back to the story... Becca was coming home telling me the paraprofessionals were not following the IEP. She and her little friend were being dropped off the bus and at times no one would meet the bus and they were stuck outside because her arms and tiny hands too fragile to open the heavy door. The only handicap accessible door button was on the other side of the building and the bus dropped them off on the opposite. I followed the bus one day, and got stuck behind a train and arrived ten minutes later to witness Becca and with her friend who uses a walker standing soaking in the rain. I let them in and this Mom was not happy when I was in the principals office explaining the situation. Earlier in the fall Becca made me help her file a complaint about the school building being ADA accessible. But because they had a button they found the school in compliance. But they did not drop the kids off at that door, they said Becca and her friend with the walker could walk around the building. Becca still used a wheelchair whenever we were out and about because of her limited ability to walk more than short distances.

The paraprofessionals were "making" Becca write. When she asked them to write for her like they had always in the past when her tiny hands fatiged after a few words, they forcibily told her she had to write. They were unaware of the two page addendums on her IEP of what their job was to entail, which #1 was write for Becca. She was a compliant child, did whatever she was told and she just shut down and now hated going to school. By this time she was getting vocal with me telling me what was going on. When I talked to the teacher, she and the professionals said that Becca needed to write because she could and she was just being stubborn. Becca had a motor planning disorder that was caused by her 12 minute lack of oxygen and it is a permanent brain injury much less her muscle disease that was impairing her ability to write.

Becca came home one day with a huge hematoma on her head, she had been in the hallways during class changing time and had been knocked into her locker by two boys playing keep-away with their biology textbook when the one 6 foot boy lost his balance and landed on tiny 42 pound 42 inch Becca. No one called me, no one told me of the injury. When I confronted the teacher she told me that Becca needed to "socialize" with able bodied peers and that was why she was in the hallway. I was livid. They totally ignored doctors orders and that bleed could have killed her. She needs to have medication within minutes of her injury to prevent her from having joint, muscle and bleeds that can have life threatening complications.

From that time on Becca cried everytime I dropped her off at school. IEP after IEP we wrote with school being the ones who thought they knew best. A parent cannot fight the school who does not want to set precident and open the floodgate of parents wanting the same for their kids. They told me IDEA never fully funded by Washington DC and they could not afford to meet Becca's needs. I could homeschool her if I wanted too, or "show Becca that we mean business".
They wrote in the IEP that she had to comply and be at school everyday or they were going to refer us to Child Protective Services because of Educational Neglect. This inspite that Becca's medical needs had kept her out of school half days her entire life, and over half the rest of the days because of illness caught at school because of her immune deficiency.

I complied, because I did not once again have the money to fight the IEP teams decision to take the school district to fair hearing and hire a lawyer. We now had 11 children, 6 with special needs, and a husband on residency pay.

Becca begain to melt down, crying fits when I dropped her off, one day she was so upset she threw a pop can we had collected for our Backpack project nailing me in the head. She was not my happy child anymore, she was petrified. She had been abused by her newly placed adopted brother severely and he had almost killed her four years earlier and she now knew the world was not a safe place. Her school was not a safe place. I was wondering why she was coming home with so many bruises. Touching Becca, bumping Becca often left bruises, but there were many.

One day I dropped her off per the IEP because the district no longer could get Becca on the bus because of her crying (she had road a bus before and for five years successfully with Marissa or the nurse back in Minnesota). The beginning of the year she rode it without incident. But the inability of the school to meet her needs and not listen to her doctors, treating professionals and her body's uniqueness had cause so much trauma to Becca she did not want to go I thought.

One day in spring I dropped her off in the counselors office per the teams decision to put her in a conference room alone to cry it out, despite my knowing this was not going to work, but I did not want to lose my daughter to the foster care system because of schools threatening to call CPS and take her away.

I had forgotten Becca's backpack with her medications, her food for her hypoglycemia and her water as she gets dehydrated easily and her inhaler. I walked in to witness the paraprofessionals carrying my daughter screaming, one had her frail arms and squeezing her tiny chest and the other pulling her tiny legs. Becca was no bigger than a thin Kindegartner or 1st grader. They were doing this at class changing time with over 800 kids in the hallway to witness her crying.
The school was doing vision screening and Becca's crying was irritating the screeners and they felt that Becca would be embarrassed by the other middle schoolers hearing it. Didn't they think restraining and carrying her in the hallway at class changing time would be worse?

I called an emergency IEP meeting where I had to "make her understand and show her I mean business" or take her home to homeschool her. I had understood from Becca who I had taken to the doctors and talked with the therapists about what had happend and Becca told us they were "hurting her at school". Becca was restrained at school for "Crying" or "Refusing to write".

For Becca her whole life has been medical tests, the word "test" is a trauma trigger. Making her take a "test" sets her into crying. Making her write, will not cure her brain injury or fix her hands that don't work. Making her go to school when she can't will not change her faulty immune system, or the headaches caused by flourescent lights or the noise she cannot filter from all the other students.

I pulled her out, then the next year with filing compliants I had discovered that they could not make me homeschool her, the school had to service her. Doctors wrote orders, and the school would only provide 2 hours a week. Kids where had IEPS in our district who had been kicked out for being distruptive or were a danger got two hours a day five days a week.

For years I fought long and hard, filed compliants, no one would listen. The schools were in charge of her education. I had to look at classrooms for Becca where autistic kids sat rocking, where other kids did nothing but drool in their wheelchairs, or other classrooms where kids had behavior issues where they threw desks at teachers and the kids who did not comply were put in boxes for hours.

One school I was to place her at, killed a teen with autism by prone restraint, four people suffocating him and the district would pay out a settlement years later after blaming the parent for not meeting his needs. I had joined the autism society's class action lawsuit saying that their was not an appropriate placement or appropriate services for children with autism in our district or the state, only to be dismissed.

IEP after IEP they denied more time with the teacher, eventually they upped the school hours to one hour a day. I still do not understand that other kids who were kicked out got more time than Becca. The team always said she would "fatigue" too easily and they did not want to stress her. The school people manipulate whatever to fit their agenda. Before when she was in school she was to be their full days despite doctors orders. Other times the team fought doctors orders and medical reports on her needing home instruction (the state only had to provide a minimum of two hours a week for homebound teaching). They still would not ad a secondary qualification to her Other Health Impaired certification on her IEP, we fought to ad Autism. They said her autistic tendencies were from her Noonans Syndrome, citing printed pages from the Noonan Syndrome Support Group. They denied many requests for new IEPs, they said she did not meet the States Autism Standards because she could talk. Later I learned that the state standards did not meet the Federal Guidelines. They have since come into compliance and she finally qualified at the age of 16 after four years of fighting.

I kept her home. I had taken her to out of our district that had a small classroom where they would meet her needs and mainstream her, and even got the district to pay for the paraprofessional hired by our nursing agency to go with her. We practiced going to school for over two weeks, and walking in by herself. She froze in the sidewalk looking up staring at the sign that said "School" frozen in her tracks gazing at the sign she peed her pants with us all watching. She had been dry since she was five years old, now at l4 and in 8th grade (46 pounds and 46 inches). The professionals diagnosed her with Post Traumatic Stress Disorder. She was afraid of schools.

I would continue to fight for her right to a FAPE, Free and Appropriate Public Education,
but the schools still do not have to follow doctors orders. If they do not have a program to fit a child like Becca no one cares. No advocacy organization would fight for Becca, she has had such little schooling, I have taught her everything I can. But having Mom creates dependency and I had to hire people to work with her. She has right to occupational and physical therapy but they deny it, I had to privately pay. They would not pay for her technology needs, I have.

For a child like Becca who is a survivor kid, who had the best the medical professional world had to offer, we brought her far. For the child who would not live to be two, she can read Tolkien with supports, but the schools goal was to decode first grade work.

There was no IDEA for Becca, No ADA, No FAPE. They destroyed my daughter's ability to trust teachers, school people, school. For years we had to stay home because of the districts policy if she was on homebound that if she entered a school building for anything else other than an IEP meeting she would not be schooled. I could not go to her brothers and sisters school events because I could not leave Becca. She could not go either. Only after we got the district to agree to home instruction after requesting mediation would she finally go into a building with the districts blessing.

We had for years to practice going to a school with Mom in tow. She still tells us how scared she is just to go to the school in Wisconsin to drop off her work. We left Michigan partly in search for schools that do a good job of meeting special kids needs. We thought we had found it, but the new district neglects her needs even further.

Becca is now 19, does not have a diploma. Never an apology from the school staff for failing to meet her needs and for causing her so much trauma and the year of bruises from repeated restraint for "crying". I had schooled my daughter, I did what was right for her. Many a parent has pulled their child from the schools because of the trauma of misused restraint.

At long last the practice may be outlawed. I wish I had the funds to head to Washington to tell the story, but the story of the parents who have lost their children due to schools restraint policies are much more powerful. I have been told by Becca's cardiologist, bleeding doctors etc. that the school could have killed her, but God protected her from the paraprofessionals mistreatment. But the psychological implications are still there to this day. She is lonely, she is sad that she will never get a diploma despite her rights in this country.

We did not fail Becca, schools did. We did not abuse Becca, schools did not by listening or being held to standards provided by Becca's Medical Treatment Team.

Not only should Washington Act on providing safe schools with tackling the issue of Seclusion and Restraint, they need to rewrite the laws that the Schools "MUST" follow doctors orders to ensure the safety and wellbeing of our fragiliest children. They also must ensure that the Advocacy Organizations and Educational Advocates who get funding from Washington, help Kids like Becca GET AN EDUCATION.

Becca's Civil Rights were violated, she has been given an education less than her able bodied peers, they did not follow her medical professionals recommendations, and they threatened and retaliated when complained upon. I could not afford the $100,000 in lawyers fees to fight the district and the state to get Becca her guaranteed rights to an education. They did not want to set prescident.

Becca had to settle for the FAIL FIRST education, prove to the districts time and time again what does not work for them to finally understand they were wrong. I at times had to refuse to comply only waiting for the District to have Child Protective Services at the door that they had finally had enough of ME fighting for Becca's Education.

I pray the Grass Roots Movement and the Autism Movement finally prevail, that No Child Will Be Left Behind like my Becca. I pray President Obama will care for our vulnerable children and help educate them with understanding. Under President Bush's Leave No Child Left Behind, left Becca and so many other children left home psychologically traumatized and educationally neglected because schools don't want them.

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