Posted June 13, 2011
    My son is Matthew. He is in the Autism Spectrum Circle. He has delay in speech and cognitive skill and Sensory Integration Dysfunction.
    It is very difficult. Matt screams a lot and is a huge safety concern. He beats his head on the floor. runs out in traffic with no fears, but has severe anxieties.
    Recently our Special needs daycare closed. We do not have a lot of options when it comes to child care. No one wants to care for a child that screams, and is a safety hazzard. My mom has high blood pressure and loves Matt with all her heart but cannot watch him for long.
    Anyway we took Matthew to a well known Daycare called Club Kid in Edina MN. I filled out a card telling and explaining Matt's behavior and issues before dropping him off. We usually only leave him for 1-3 hours. Well, we left him for half a day on Thursday and he did well. We dropped hm again Friday and my husband dropped him at 10:30am. The owner called my place of employment at 3:00pm and said "We need to discuss your sons behavior. He has been screaming all day and he ran out our back door two times." My response was I told you ahead of time everything about Matthew and there was no problem and I let you know of his screaming. She told me," well it was very busy. I don't want to tell you you can't bring him back but..."
    Well I am sure that is what she was saying. I told her I would not bring him back and she was very happy to hear that. She treated me as if I was the problem and my child was a nuisance. I felt terrible! What do you do when there is no where to go? I wonder how they treated him that whole day???? Do they turn away 1 out of 10 children? Why not learn and help? They called my husband and told him he HAD to pick him up.

    Nadine Monge
    Minneapolis, MN


    Posted May 17, 2011
    My son David is now 10 y/o. He was first diagnosed as having autism spectrum disorder at the age of two. I have never stopped with getting him help and services, in and out of our home. He was doing so well, even though we had our ups and downs, that when I got remarried and moved to VINELAND, NEW JERSEY they realized, as did I, that he was too high functioning for their self-contained autism class. They had told me upon registration that they don't send kids out of district. Well, I do know quite a bit about the IDEA and the NJAC's special ed code so I knew if we got to that point I could fight it but hey, if they have a program in district, its closer to home, lets try it. (And the other school wasn't only for autism anyway so maybe this would work.) Well he had actually started 1st grade in that autism class but by november of that year he mainstreamed into an in-class support program. He did amazing. He had friends and for the first time ever I saw something that I wasn't sure would ever happen, he was invited to birthday parties. He finished that year and was so excited to go back. But then in 2nd grade, the 3rd week of school he came home one day and asked me "Mommy am I weird?" Well I gave him the best mommy talk I could, ya know, all of us are different in our own way and when people don't understand us they start to say mean things like that. Things got worse and worse and it was coming from the same two boys, and a little girl. I went to the school, his pyschitrist went to the school, his play therapist went to the school and we all demanded something be done. What they did was tell tell me that they didn't feel my son was autistic because they had never met a child like him on the spectrum. He could give it as well as he could get it and that it was age-appropriate "teasing". All the while the segragated him by making him sit all alone in a corner of the room and told him he was just a bad kid making bad choices. He started to regress dramatically and was even smearing feces on the walls in his playroom all in hidden areas so we couldn't see it. Then they tricked me into putting him into a class that offered "emotional support" which ended up being a BD class, which is a class full of children with behavior conduct disorders. Now he is a target. His new doctor has pulled him out on home instruction and our attorney has filed a discrimination claim against them. I will not stop fighting to help him get back to where he once was. All that time I worked with him and got all that help for him, I will get my son back! Everyone needs to hang in there, DO NOT GIVE UP. Go to the Board of education meetings and make sure they know your name and your face and they know that you are not going away. My board knows that I will take this as far as I need to in order to get what my son needs. I don't care if I have to go through the special ed code with a fine tooth comb, but I am not going away and I am not just handing my son over to them to do what they want. He is my son and it is my calling to advocate for him and to protect him!!!!!



    Kellie Almeida
    VINELAND, NJ


    Posted April 25, 2011
    I invite you to take a minute to review the poorly inspired video posted on You Tube this past Eastern Holiday.
    This was MTV Brasil´s tribute and contribution to autistic children parents´ efforts to enhance awareness and acceptance of their sons´ and daughters´ condition.
    Great timing since we have recently had Autism International Awareness Day, on April, the 2nd.
    This is also to let you know that parents grouping up at Rio and São Paulo (Brazil) will do everything in their power to prosecute MTVBrasil as well as to have them go on public retraction and to terminate the insulting show called Autistics´House. MTV Brazil is a Viacom company. Do you think we could also make Viacom accountable??

    Here follows the link:

    http://www.youtube.com/watch?v=-1sFU_b9bt0&feature

    This was supposed to be a comedy show…


    Vera Lúcia Barroso Alves Frascino
    São Paulo, Brazil


    Posted February 28, 2011
    My name is Shining Star and I am Native American
    It is sad to know we live in a world where there is so much discrimination and hate. I worked as a caretaker for a family who also where Native Americans and their family it was Grandfather , Grandmother,daughter and her Autistic 16 yr old son...he was the one I worked with although they could never get any of the agencies to provide any help, nor the state, nor the county I worked alone and many hours because no help and the family is not able to care for him without help on account of disabilities, This boy grew up without friends no one in the county would bring their children to play with him. they even went to a food bank to get help with food and was turned away,because they weren't part of a church organization so not only does he get discrimination from all these for being Autistic he gets it for being an American Indian Cherokee. I am like most parents when I started there I had no idea about Autism or what to do and never got any help although ask for some training fell on deaf ears but I learned on my own what little I did I have come to the conclusion the states and the government and communities we are on our own with these kids cause all they want to do is pass the buck and spend the money as long as they don't have to go deal with the child face to face all the time to earn their pay...so sorry if I sound bitter but I see what years of discrimination does to helpless folks who cry out for help....>>>--->SS



    debra
    O'Brien,Fl


    Posted January 6, 2011
    I live in a very small town in Northern Ontario. My daughter is ASD\GDD\NOS. We are about to start genetic testing for FXS and have an MRI for seizure disorders. I tried putting her in a mainstream public school for her first year of school. That lasted all of 5 days and it was 5 days of hell on earth for both her and myself. I won't name names, I'm not naming the town I live in for privacy reasons.

    It started with a phone call on the second day of school and a request that she only come to school for 1.45 hrs a day rather than the full day because she is too disruptive and too much to handle and won't sit still and listen. The staff member went so far as to say she would head lice check her and send her home (indicating that it didn't matter if she found head lice or not). Then the daily logs of her "bad behavior" were sent home under the guise of logging all the issues for a transfer to a different school for exceptional children (to which I have done and am utterly satisfied with the staff and school there). She was put in time out all day long and segregated from the classroom.

    I had to contact CAP\Sick Kids T.O patient advocacy and Autism Ontario to help me find resources and ideas on how to deal with this issue. They utterly treated her like a pariah of both the school community and classroom. I got the distinct feeling that they just didn't want to deal with her at all in any sense of the idea. It was disheartening to see her treated like that, like a non-human who wasn't worth a minute of time or compassion. I'm happy to say though, her school she's in now has every resource available to her and much more and the staff and kids there treat each other with respect, dignity and honor. Even the bus driver gives my daughter a smile every morning and shows compassion and love for her as if she were her own child. It was a rough start with a happier ending but not everyone has this happen. I want others to know to keep their chin up and keep fighting that fight. Don't give up and don't ever give in.

    SMB
    EL, Ontario


    Posted December 23, 2010
    As I read all the heart wrenching stories I have no other recourse but to evalute my life and the lives of the people around me. My son nicholas is turning 3 soon and was diagnosed autistic almost a year ago. We have come a long way through help of many doctors, teachers, social workers, family, and friends. I do not have any horror stories to tell but I am very aware that as we approach the school years I will. I am grateful for the strength all of you posess in order to share with me. I will take from your strength to make me strong and to keep my eyes open. I know it is coming and with all of us united we can be vocal and fight for our kids and our families. We all have the right to be at peace. God bless all the children young and old.

    Patty
    Connecticut


    Posted November 30, 2010
    to the lady below who wrote about the YMCA and discrimination. Do not feel bad at all, it happened to my child also. He had a BM in their bathroom and made a mess on the toilet. Since he was six years old, they did not want to deal with it. I guess it was okay for the todlers, but not the disabled. The sad thing is, I was the one who cleaned up the mess by my own request. I did complain to the YMCA... that fell on deaf ears. I think as a "family gym" they should be more receptive to the disabled and their "not so perfect behaviors" that come along with autism! YMCA get with the program... Autism is here...learn to deal with it :)

    Fed up
    wichita, ks


    Posted November 19, 2010
    Hi everyone and thank you for taking the time to read my story , my son have Asperger as a result 8years old he have a severe Feeding Disorder , he only eat for 8 years cheese Pizza, at the school he was descriminate and they principal of the school refuse to respect the IEP and the doctors medical recomendation for my son, the only accomodation was to kindly warm up his lunch for 40 second an a microwe , However that never happend she have connections at the School Board and district and my daugther 25 years old , she follow all the proper steps for Justices , my son end up at the ICU in the hospital as a result the school never respect the doctors letters and recomendations that my son Medically need it , the sicological abuse him and now my son is with a sicological trauma and school Phobia , the problem is that he is scare that all schools are the same , he is very inteligent and good conduct , I need justices and no one have help me to resolve this matter , now my son is at Home with no education and he is AMERICAN . he was place 1/2 school and 1/2 HOMEBOUND However he refuses to go to school because he thinks that they will do the same abuse, I am a single mother , I am looking for legal help , Attorneys charge 250.00 per hour on civil cases, can someone suggest me with any other ideas of what to do, belive me we contact many agencys of avocacy centers and they told me that it is iligal what the schools system have done , but they do not want to get involve because of politic issues, I can not belive that in USA in 2010 we still experiences discrimination with childrens with special needs. Sorry y english it is not the best .
    Thank you
    Marcela from MIami Florida my e-mail sanmartinmarcela@yahoo.com


    Marcela
    miami florida


    Posted November 3, 2010
    I have an autistic sister. She is 29 years old and lives in Brasil (she is Brazilian). I'm an US citizen living in the US and so is my younger sister.

    Our parents always visit us (with their tourism visa), and so wanted my sister. So they requested her visa so she could visit us. They denied her visa.

    She has been going to a special school in Brazil for over 20 years, she owns real state there, has many banking investments and other things that prove she would not try to illegaly immigrate (specially considering that we could apply for her green card if she wanted to).

    To me thats a clear discrimination that makes me extremely sad since it comes from my own country.

    Monica
    Tampa, Florida


    Posted August 26, 2010
    Convention on the rights of persons with disabilities-ENABLE -United Nations

    All members of society have the same human rights - they include civil, cultural, economic, political and social rights.  Examples of these rights include the following:

    equality before the law without discrimination
    equal recognition before the law and legal capacity
    freedom from exploitation, violence and abuse
    right to respect physical and mental integrity
    freedom of movement and nationality
    right to live in the community
    freedom of expression and opinion
    respect for privacy
    respect for home and the family
    right to education
    right to health
    right to work
    right to an adequate standard of living
    right to participate in political and public life
    right to participate in cultural life

    All persons with disabilities have the right to be free from discrimination in the enjoyment of their rights, including their right to an education. This includes the right to be free from discrimination on the basis of disability.

    The Convention on the Rights of Persons with Disabilities is an international treaty that identifies the rights of persons with disabilities as well as the obligations on States parties to the Convention to promote, protect and ensure those rights. The Convention also establishes two implementation mechanisms: the Committee on the Rights of Persons with Disabilities, established to monitor implementation, and the Conference of States Parties, established to consider matters regarding implementation.

    States negotiated the Convention with the participation of civil society organizations, national human rights institutions and inter-governmental organizations. The United Nations General Assembly adopted the Convention on 13 December 2006 and it was opened for signature on 30 March 2007. States that ratify the Convention are legally bound to respect the standards in the Convention. For other States, the Convention represents an international standard that they should endeavor to respect.

    The Netherlands has signed on to the Convention of the Rights of Persons with Disabilities, yet discrimination is still rife throughout South Holland.

    Article: UN criticises Dutch Treatment of children:

    ”Children with problems are...placed too readily in institutions”.
    “It is the third time that the Netherlands has been called on to report to the UN on its observance of this treaty” (UN Covenant on the rights of the Child). “Puras criticizes the “excessive institutionalization” in the Netherlands”-and states that there are long waiting times for assistance, and that children are not better off in institutes.

    The Netherlands – ANED country profile (Academic Network of european Disability experts
    The information contained in this summary was compiled by the Academic Network of European Disability experts (ANED) in April 2009.

    Academic networks and resources
    Disability studies is not a developed field of academic study in the Netherlands and is not supported by an organized academic network. Research is being conducted to explore the feasibility of developing disability studies. Several people and institutions are involved in doing disability research, but mostly in isolation from each other.

    Statistics for people with special needs in The Netherlands
    The Sociaal Cultureel Planburo estimates the number of persons with some degree of a physical disability in the Netherlands to be 3,377,000 persons, or 22.5% of the population (SCP 2007, chap. 2, table 2.1, p. 33). The number of persons with a moderate to severe physical disability, including visual and auditory impairments, is estimated at 1.7 million people, or 12% of the population. The number of persons with an intellectual disability is estimated at approximately 110,000 (EUMAP).

    Disabled people
    The principal foundation of Dutch government's policy on people with a physical, mental or sensory disability is that they have the same rights and duties as anyone else.
    The Ministry of Health, Welfare and Sport encourages people with disabilities to be as independent as possible. They must be able to use the same facilities as anyone else. Special measures are needed only when this is not possible.

    In the past, people with disabilities were often regarded as medically unfit. Services and aids were provided on that basis. The current policy is not to shut them away in institutions, but to give them a place in the community.

    In 2002, parliament unanimously approved a bill on the equal treatment of disabled and chronically ill people, prohibiting discrimination against them in the field of employment, training and transport. This law, the Equal Treatment on the Grounds of Disability or Chronic Illness Act, came into force December 2003.

    “The argument is that, if we try to look for explanations of behaviour and development solely in terms of the characteristics of condition such as autism, this will lead us to ignore individual characteristics (treating the person as 'autistic' rather than a person with autism, in effect). Even more importantly, we may ignore the fact that the social situation and attitudes of others may be creating the difficulties we observe” (p. 29, Jordan, 1999).

    Teacher Training
    The budget available for ‘on the job’ training is often underutilized. Training of teachers and other staff in the education sector is not yet seen as a matter of course. It is the employers who administer the budget; staff themselves state that they would appreciate more training opportunities than currently available. The various Collective Labor Agreements for the education sector include target figures for the proportion of working hours to be devoted to training, but these targets are not being met.

    This underinvestment in training is a matter of concern and is likely to stand in the way of
    any further professionalization. If responsibility for administering the funds is organized
    differently, if may be possible to make better use of the existing training opportunities.
    Specific training funds or ‘personal budgets’ seem worthy of consideration in this context.

    Raising public awareness

    There still exists misconceptions and negative attitudes towards people with disabilities. Therefore, in an awareness campaign, the aims should include:
    3.reinforcement of positive attitudes towards people with disabilities.
    4.motivation through example, knowledge, understanding and common sense.
    5.show how anything is possible by knowing a positive lifestyle.
    6.introduce empathy.
    7.how to act when meeting someone with a disability.

    For centuries people with disabilities were thought to be helpless, indigent citizens, and were forced into institutions and asylums without equal opportunity or equal protection under the law.

    Working with school children-As Carol Gill, a chief disability rights advocate, observes, “We have been viewed too much in terms of our diagnoses and too little in terms of our person hood…Most of our problems are caused not by our bodies but by a society that refuses to accommodate our differences.”

    Families have experienced difficulties in taxi transport (overcharging parents for taxi fares), funding, finding their way through the maze of organizations that are put in place to help, budget cuts, inadequate staff, resources at schools, KDC's, MKD's, been given outdated and inappropriate advice about autism, waiting lists, lack of therapists (speech and language, OT, PT), children are denied their right to an education, public awareness remains low, therefore myths and outdated information about autism and behavioral issues are misunderstood and children are not offered appropriate services, expat newspapers wanted money for advertising before accepting articles about children with autism and their needs, Haaglanden education dept for police contacted, but never received a reply to my emails, letter or telephone message. I had offered free training for staff at KDC in Amsterdam, but my offer was rejected.

    Among other offensive behavior, these are common occurrences here:

    -untrained staff at schools, KDC's and MKD's
    -taxi driver threw out bags and screamed at a child with autism
    -professionals asvise parents to put their children into institutions
    -castration advised to another parent with a special needs child
    -high stress levels of parents (especially expats)
    -seclusion and restraint still utilized
    -scarce knowledge about behavioral assessment and intervention among staff, doctors
    -public awareness is almost non-existent; needs to be widespread and included in newspapers, television/news stories, radio, more regular exposure to information may lead to greater understanding or conditions of special needs children and their families.

    Bullying, segregation, myths, outdated information all contribute to the suffering of the child, who is already vulnerable.

    I have offered Community Awareness and Supports such as training and information sheets for police, fire, emergency services, doctors, dentists, and hospitals in what autism is, and how to work with people on the spectrum in daily life and critical situations which occur within the community. Also, I have offered training seminar/workshops to school, KDC's and other organizations about the most current, scientifically sound interventions including: the SCERTS model, PRT, current research, individual schools, KDC's, health organizations.

    Parents are consistently being over-charged by taxi firms to transport their children to and from school. Parents also experience long waiting lists, they receive outdated information about autism and how to treat it, are advised to place their children into institutions, trouble with funding and budget cuts, encounter untrained staff at schools, KDC's and MKD's.

    And yet, in the end it is only the vulnerable children who suffer.

    Children with special needs are consistently denied their right to an education, and instead are placed into KDC's or MKD's with untrained staff, a lack of resources, and strict holiday schedules that impede normal family holidays.

    Bullying, segregation, seclusion and restraint are common practices due to the lack of knowledge of behavior analysis and modification techniques. Children are not seen as 'humans with a special needs', they are viewed as second class citizens, and I have done my best to curtail this by offering training, information sheets, and feedback to organizations willing to learn and become better informed about children and their needs.

    Do you have a story about a positive or negative experience with the Dutch system? If so, contact me at kelly@specializedautismservices.com, lets work together to raise awareness for these precious children!


    Kelly Redden



    Posted August 14, 2010
    From my blog
    http://blogs.chron.com/autisminthehouse/2010/08/freedom_contingent.html

    Leslie Phillips
    Katy, TX


    Posted July 23, 2010
    My son was teased and bullied in elementary school. Depite a letter to the school by his psychotherapist that the verbal bullying needs to be adressed there were no changes. It got worse and he eventually was physically assaulted every day in class, kicked by kids in the legs. I discovered 35 nickle size bruises on his upper thigh and his shin on the same leg also had bruises. I filed criminal charges. The teacher claims not to have known anythingabout this daily torture. An "investigation" revealed that it could not have happened the way my son said it did.
    This drove him over the edge and he wanted to commit suicide. He ended up in a mental hospital which was actually a blessing, he was put into a different class and fishished the school year without further incidences. The bullies stayed in their class but Child Protective Services got involved, the parents of the kids needed to meet with officials of the school district etc.
    My son is doing better now.

    K V
    texas


    Posted July 14, 2010
    I have three girls and one of them with autism. Her story might be not as severe as some others such as arrested, physical abuses, and etc; however, emotional abuse can be the beginning of the further abuse.

    I rarel take my autistic daughter to YMCA, but there were a few times, I left her with her sisters at the nursery. After a couple of times, I learned from my older daughter that my autistic daughter was treated different. Especially, one of the employees at the nursery was mean to my daughter by putting the toys away if she wanted to play with, screamed at her, verbally expressed that she could not stand my daughter in the presence of all the children and other employees at the nursery. They did not let her go out to the playground while others were out and one time, she was out, but they dragged my craying daughter in and etc.

    I wanted to share this episodes with employees in the state of SC to let them know that my daughter is struggling and need some supports. Even though the employees at the YMCA discriminated against my daughter, I understood that they were not trained in the area of special needs; therefore, I kindly asked them if they could describe the events happened under their care, so that I could submit. Not only they discriminated against my disabled daughter, but they also denied to support my daughter for gaining more services.

    Forms of discriminations come from many different sources and in different ways, and this is sad that the families with autistic children face the roadblocks in every direction. If I did not send my autistic daughter with the other two, I would have never known and we live in the fear, what about other places that how many more people have been treating her in this way and how many more would be?

    Ironically, the YMCA in Beaufort, SC has a motto on Christianity; how often, do we put the fake sheild on the surface to cover it up the beyond?

    Kim Nelson
    Beaufort, SC


    Posted June 30, 2010
    Please, read this I am unable to give my name and more details of my story with my 10 year old autistic limitedly verbal, midly delayed son. Know that after i fought hard to get my son in a day approved private school in N.Y., the school did not really appreciate parent involvement as they claim they do in their trainings, website, and representative of their teaching methodology. As a parent they have mistretead me, disrespected me and worse it impacted on my son. He has been getting written up every other day, accussing him of over active, aggressive, non- compliant. this is a school that "specializes" in children with autism, their top billing and other developmental disabilities. I was vocal, i continue to advocate for him. It is hard, I am the sole supporter as a single parent of one child with special needs. I am getting phone calls from school constantly, being harrassed, nervous, I cried and sadly i pity myself and my son at times. I just want to say that there is a lot of red tape, lots of lip services from agencies, schools advertising themselves to help families with autistic children. I am telling you that if you find it difficult, it is harder more difficult if you are a minority and do not have influences or connections. I am unable to get him out of the school that i so much wanted him to attend because unfortunatelly most public schools in N.Y. for autistic chldren are not the best, very few are. My son is on medication on their account because they always complained about his behavior, he has a para now for some time and still. Are they not trained? their organization/school gives trainings in positive behavioral support! the point is that i am told they are working to get him out of the school and that is why he is being constantly written up for a long, long time. I feel so depressed, a functional depressed mother still working, crying, hating to feel like a victim but
    hurting much more for my son. He is not able to tell me what happens in the so called "incidents"
    I have tried to get help, but not really to avail. There is more that i am unable to say, but i am sure my story may resonate with others and i think i have given enough identifiable info. for where we reside, but i just felt too compelled to vent my sadnes, anguish, frustrations and anger.

    M. Olivetti
    New York


    Posted June 28, 2010
    I am submitting this story on behalf of my son and family who due to my son's diagnosis of Asperger Syndrome (highly functional, intelligent, capable with supportive environment) he and we have experienced many many situations that have been blatant discrimination (civil rights violations) and situation's that have been more subtle - stating that because others do this it is ok or right.

    He has suffered at the hands of untrained and unknowing school personel - who refused to get additional training, who stated that seclusion and restraint and the use of adversives were treatment modalities that were appropriate for those "like" my son. The School "fired" the Autism consultant that told the school what they were doing was not right or correct. He has been excluded (not to his wishes) from numerous school activities many times through being asked to leave the classroom and stand outside the door while the teacher "talked" to the other students - so that my son did not have the same information as they did regarding attending class trips, social events, assignments, knowledge, and ect. He was left alone in the classroom while his class went to recess or to lunch and was left in the lunchroom while the class went to recess or their next activity. We were asked to remove my son from one school and attend one of the other schools given the reason that the special education teachers were located at the other school. However these same teachers came regularly to his original school to work with other students (not more than 1 mile apart from one another). He obtained "high" enough grades in his classes to make sure he passed and would not be eligible for speical services. We as a family were "called" names under hushed voices, and while at IEP meetings there were many times when the teacher's would kick each other under the table when certain topics were brought up such as testing for additional supportive services (as his grades and testing did not match - so my son was denied FAPE under IDEA. (ie. He was getting an A in math, yet when we had our own testing done which forced the school to test hime, he was in the bottom 2% for math. My son was the only child ever to be denied access to the school's Charter School; and then again denied during enrollment to attend a nearby school districts school for which his sister was not denied open enrollmet to that same nearby district. In not so subtle terms we were told that they would not approve his open enrollment under appeal (which they hired an attorney) however at the same time they would not provide supports and accomodations necessary. My son who was moving into the middle school (and they clamed he was miraculusly "cured" and did not require any supports he had at the elementary level. If he would have stayed - he would have failed (which is what they wanted) - so they did get what they wanted in the end - we moved at our great expense. His school experience included 7 different school placements in 7 years. He was removed or "asked to leave" 3 different Boy Scout troops (not tuckig his shirt in - not attending an overnight camp-out which the troop leaders dogs ran unleased - not playing competive games with the other boys), an exercise and fitness center (for being accused of soiling the bathroom which others were using the facility), a family resource center program as other boys "bullied" him. I could tell many more instances - however I think you get the idea and the struggles we have had in this regard.

    Thanks


    Peggy Helm-Quest
    Merrimac, Wisconsin


    Posted June 27, 2010
    One time we took our son to Six Flags St. Louis. He was about 8 years old.
    Because of his autism, he had difficulty waiting in lines.
    Because of his autism, he loved rides. (they provide sensory stimulation)

    It took all of my son's nerves to wait in line for the "Tom's Twister".
    When we got inside, my son was anxious because he wanted the ride to go.
    The twenty year old working the ride stood over him and looked at me and
    said that he couldn't ride. I said that he was just anxious waiting for
    the ride to start. He refused to let him ride. My son melted and we could
    barely get him out of the park. He was so traumaticed by this young man
    telling us that he couldn't ride, that he has never ridden a ride since then.
    He interpreted this young man as not wanting him to ride because of his autism
    and because he was different. The young man thought that I was trying to make
    my son ride something that he didn't want to ride. Meanwhile, my 10 year
    old daughter who was hemming and hawing over wheter she wanted to ride it was
    not given a glance by this young man. I told the boy that he was discriminating
    and that he wanted to ride very badly and he said no. My son won't even go to
    a small town carnival now, though it would help his sensory dysfunction to be
    able to ride rides.

    Shirley
    Highland, Il


    Posted June 26, 2010
    My granddaughter is an 11 year old autistic child. She is very talented musically and enjoys all forms of music. She loves singing and learns new songs easily. She is in public school in a SDC and is mainstreamed for language arts. The language arts teacher has been unhappy with her being in the class since the beginning of the school year. At the end of the school year, her language arts class was preparing a spring sing in the school cafeteria for parents. When I became aware of the program, I asked the teacher if my granddaughter could participate as she had learned all the songs. The teacher clearly did not want that, but said ok as she was caught off guard. The next day was the performance, and we all came to see the spring sing. My granddaughter was aware and excited to participate. When we arrived at school, the principal stopped us and told me that they would not allow my granddaughter to perform. It was a very painful experience for us all.

    Diane Brower
    Redondo Beach, CA


    Posted April 30, 2010
    Help!
    Helllooooo, Helllloooooo, Helloo, Hello!! (Hands cupped around mouth- calling into the vast unknown… if only we had a Tarzan call!) Halen (a funny teenager with high functioning Autism Spectrum Disorder or Fragile X) and I need our community!
    I need moms and people who know school systems and people who know law and people who know halen and fragile x, autism or aspergers, and people who know me, (and people who don’t) to please stand with me and help me understand a system that seems to have no place for us and face a very difficult time with courage and serve my son and the community by advocating for fairness.
    I need your input- your support- your stories- your resources…… I need your VOICE to be heard with mine and echo that we are here, our loved ones are important, and we have invested way to many sleepless nights, shed too many tears, read too many books, seen too many doctors and faced too many difficult challenges to accept anything less than at least being given the chance to be heard with as much volume as the individuals who study the disability in textbook form. Our kids are so much more than lists of characteristics-
    Here are the cliff notes to my oh-so-long story:
    15 year old Halen was at my house waiting for aunt Maurdi after his school had suspended him (I got the call at 7pm at night)- dad called school- school called cops- cops investigated and said no problem(misunderstanding)- Halen gets suspended again- cops call me- I called out cop for being mean- cop files bogus report- case reopens I get charged with misdemeanor child neglect-Halen gets suspended again- and again- and again- (because of exhibiting behaviors associated with his diagnosis during transitions etc) School hearing- find that it is his disability and he needs more supports- have an evaluation and explain the misunderstanding and say doc says he's ok- mom says he's ok- grandma says ok- dad says ok- neighbor says ok- DSPD coordinator says ok- (he WAS ok...) She tells me she is worried about my lack of remorse and will work on a treatment plan for me. (huh? This was pre-plea… am I already guilty? What kind of treatment can they give me for believing after 15 years In The Trenches with my child that he WAS safe?? ) Today they called and changed the charge to contributing to the delinquency of a minor………. ???
    So sad…. So frustrated…. Feeling so alone in this big world
    How can a society be so advanced in embracing technological wonders like droid phones and WII systems, still seem to be so-so far behind when it comes to understanding, accepting and helping our precious communities of individuals with special challenges instead of making it even more difficult?? I feel like I am missing the boat in communicating and being heard here.
    :"((

    please- I don't understand the system- they don't understand halen. If anyone can help or point me to information please let me know or consider forwarding this message on… I know I’m not alone, I am just not sure how to find you-

    (Desperate and begging)
    Gretsel Ungerman
    Sandy, Utah


    Gretsel
    Sandy, Utah


    Posted April 21, 2010
    Please view the news coverage of my autistic son's arrest. Go to Youtube and type in 'Autistic Man Arrested'. Tell others about his story because we have to end discrimination against someone because they have a diagnosis of autism. My son was taken out of the hospital in handcuffs and was staggering, drooling, and seizing. He said to the policeman, "But I am a good boy officer". He was taken by ambulance last week to a hospital in Ada, OK after a Judge signed an order that the charges be dropped and that he receive treatment. Stephen is now missing a front tooth since being in jail and should have never had to go through what has happened to him. Not to mention the heartbreak it has caused for his father and me. Sincerely, Mary Ann Puckett

    P.S. Stephen was diagnosed in 1995 with Early Infantile Autism by Dr. Rimland. We lost a wonderful advocate for people with autism when Dr. Rimland died in 05.



    Mary Ann Puckett
    Oklahoma City, OK 73120


    Posted March 16, 2010
    Hi, I am the parent of grown up girls and my wonderful 15 year old son who was diagnosed with Autism, OCD, anxiety disorder and as he gets older is becoming bi-polar.
    We have gone to many doctors, we are still trying new medications, so we can control his behavior. He is in a Boces class for life skills and in the afternoon he is in a 6-1-1 class for academics. He has been at this new school for 2 years now. He is also connected with a job development program that teaches him job skills for whatever he wants to do. School has been the toughest job for Nick. He is so misunderstood because of his inappropriate social skills. His depression and anger has us all worried. I wish there was a magic pill to make my son smile and be happy. He has gotten into the habit now of running away when he gets upset. He left school and no one new where he was and the teachers had to take the cars and look for him. He was trying to go to Burger King but did not know how to get there. Everyday is a struggle and a baby step of learning how to be appropriate in public. This is my life and I would not change one second. I believe that everything I have experienced has made me more gentle to people's feelings and extremely more patient Thank you for listening.

    Pattie Argento
    Elba, New York


    Posted January 2, 2010
    This is about my autistic child who is in states custody. I am being threatened of him getting placed up for adoption all because of lack of services. I am open for any recommendations. The situation I am facing is difficult to explain but I will try my best. My son and I have endured many obstacles. His name is Daylin, he is a 12 year old child with a diagnoses of Autism, disruptive behavior disorder, mood disorder NOS, and MR. He is aggressive, smears fecal matter on self and siblings, he is self abusive, screams constantly, sexually inappropriate, and wonders off. I am having a difficult time with caring for my son who is a high needs child. It is imperative that I get help with him in order for him to successfully live with me and his siblings at home. He has a chronic condition that needs supportive one on one services. He is a high needs child that is at a tier one. I don’t want my son in foster care, but I am in desperate need of help with him.

    He was taken into protective custody on abandonment charges in April of 2009 (Even though I was a patient with my very premature baby at Wesley Hospital which is documented). Not to mention, I had arranged care for Daylin on that day and three weeks after with the Sedgwick County Developmental Disability Organization and their contract agency. In laimense terms he was supposed to be in someones care while I was in the hospital. That supportive care worker quit that day. She stated it was because of a physical incident that happened that day. The incident was witnessed by another driver who called 911; an officer was reported to the scene. The caller reported Daylin was being physically attacked in the vehicle by an unknown perpetrator. When the officer arrived she informed him she was being attacked by Daylin and she was defending herself. The officer released her since the crisis was over. Daylins worker was advised she would be able to take him to latchkey (after-school program), and that’s when she called her supervisor and said she was giving her notice that day. At the time, I was checked in to the mother baby room at Wesley Hospital. I was required to stay 24 hours with my newborn to learn the apnea and heart monitor that was connected to him. I made numerous frantic phone calls to my case worker and family, but either they were working or I was unable to reach them. Since nobody was able to pick him up from latchkey, he was placed into custody and I was accused of abandonment.

    I am currently seeking access to mental healthcare, but have been denied repeatedly. Daylin is currently on the MR/DD waiver and gets those services through the Sedgwick County Developmental Disability Organization (mental health and developmental health services are separate). The SCDDO contracts out meaning they hire other companies to help take care of the people who meet services (which is my autistic child). Those companies are at there own discretion to hire employees to work for them in my home or at their centers. Those employees choose the hours they want to work, and sometimes the children to work with. Most of the time those employees are college kids with minimal training. They are under-paid and don’t have the ambition to stay with the companies for a long duration. Being a mom of a severely autistic child, I have had to rely on these services to properly raise my child. I have been in a constant battle with getting help for him, keeping help for him, and doing most of it on my own for twelve years. I found (with a lot of heartache) that I could not rely on these organizations for a range of different reasons. He gets a certain amount of supportive home care hours from the SCDDO that is either not getting filled or is not consistent. I struggled to raise him on my own without his fathers support, family support, and with minimal or sometimes no support from the SCDDO.


    In my case, I would request services be filled for certain hours of need. Example, I would need someone to be at my house to get my son off the bus at four pm. I would not be off work until six so it was a must that I have reliable care for Daylin two hours everyday. What would usually happen is the person would not be at my house on time. I would have to take off early and get my child and risk loosing my job. When I would call the contract companies for a replacement staff, the companies would tell me they don’t have anyone to work. I suspect that meant that nobody wanted to either work with my son or those hours. If the hours are not utilized for any reason, the SCDDO reduces them assuming the family must not need them. In other words either you use them or you loose them. It was frustrating because majority of the time it was at the contract companies discretion to find help. I spoke with Chad VonAhnen at the SCDDO on many occasions about my concerns. He advised me that they could not make these agencies hire help for me. Months would go by and I would be raising my son and his siblings with no help. I would cry myself to sleep asking why me, a cure for autism, and for some help!

    In my opinion, the most severe children suffered the most. It was hard to get new employees to not only work with my child, but to keep them working with my child. Daylin would have full blown temper tantrums. Daylin was an aggressive child and would sometimes lash out at those around him. I speculate it was because of the new faces. Change is hard for autistic children. I also believe some of his aggression was due to taunting Daylin. Because of this, staff who would mistreat him due to lack of training on dealing with those behaviors. I have walked in on staff lying on top of him trying to restrain him. I have seen serious questionable marks on his back. I would call and make complaints to the agencies and take pictures but nothing was ever resolved. To add injury to insult I would be questioned by SRS about the marks on him.

    The staff has not only been suspected of abuse but I had staff steal from my home on many occasions. I would report it to the agencies; nothing was resolved from those incidents. Because of the abuse, the theft, or the “no shows”, I would be accused of being to “picky” and would be blamed for lack of staff by the very agencies who were supposed to help me. And in many cases I remember actually settling for this behavior just to keep staff and not be blamed for being “picky”. I was told by a staff member at rainbows that there was a prejudice against Daylin and myself. She also reported it to my case worker at the time. She said the frustration of the high needs for Daylin was the cause of the problems I was having.


    I was told by many agencies that in order to get help for Daylin and the services he needed, and for them to be consistent, I would need to take him to an organization that is equipped to deal with his aggression. They said the MR/DD waiver is for developmental issues not for his aggression. I was told to take him to Comcare CMHC. On three different occasions I took him to that agency for him to be evaluated and for services. All three times I was turned down. To this day he is in foster care. I am trying to fight for him and his rights. I love my son with all my heart and want him home.


    Misty Rhymes
    Wichita, KS


    Posted December 6, 2009
    I have two children with the autism spectrum disorder. recently my 3 yr old with pervasive developmental disorder was hospitilized due to repitory problems. He refuses to eat anything, other than stage 2 baby food. It has to be green beans and bannanas. The hospital didn't like this idea and neither did they like the idea he has to have a bottle to go to sleep at night. I know it is bad for his teeth, I am a good parent, I know what is best for my children. I have three already grown and well established. This was so heart breaking to happen right here in the United States. The doctors and nurses discriminated against me and my family over the eating habits and the bottle, so bad that they kept my son in the hospital for two days longer to observe how I was feeding my child. The hospital would not let us go home nor take out the intravneous needle in his arm until they could teach me the proper way to handle my child and his nutrition to suit their needs. All children are different, but especially these children. My child would have cried so hard and melted down so bad he would have really gotten his breathing into more of an uproar.

    We go into stores and when they misbehave, and even at hospitals, or dr offices. I get told that they are normal looking kids that has to be normal and not autistic. I feel so at loss. I have no idea what to do. I tell these people it is autism, arent you aware of it as a doctor or nurse or teacher? Apparently they are not!

    Regina
    summertown tennessee


    Posted November 15, 2009
    I have a sweet little blessing from God. He gets very emotional when I tell him to put down the tape or tuna can and as I work my way around the store or place (where-ever) it may be... people stare... is uncomfortable and I wonder if people cannot just have respect... Autism should be just about in everyone's minds... even people in small towns or who don't watch tv. He's a person too. I am not being a bad mother. Is his way to vent so I let him just vent out. He cannot say "I am pist" or "I am angry". He's on a special diet as he learns to comunicate more and more he still is Autistic.

    I also want to mention the inconsiderately UNPROFESSIONAL bus driver in Staten Island NY who on 9/10/09 told me to give him a break and his bus aide who grabbed my son through his under arm/shoulder because he was having a moment of angry... He pulled up with the bus door open away fromt he house and I had to remind him that this is not the way to do it for safety reasons. Then he did it a 2nd n 3rd time. Give him a break? He is older n should have known better. SHAME ON YOU!!! He works for the bus company called Staten Island bus company. I called the bus company that day and Supervisor Peter hung up on me after I asked that my son be brought back. I told him he is being kidnapped because he was forced into the bus saying no bus. Unfortunately the bus driver slammed the door n hit the peddle zooming down the street with my son just barely in the bus not even on the seat n seatbelted. Peter who told me was the supervisor I reported to the OPT in S.I. after he hung up on me. I had to call the police. Now my son has a different bus driver but after this I watch buses, including the one my son's rides in the morning. I trust nobody when it comes to my kids. Trust is earned. I have seen buses from all bus companies big buses n small buses running stop signs, red lights, speeding, cutting people off. AMAZING.

    Martha MyKids1st
    Richmond County for now, NY
    (looking for a nicer~safter place to raise my kids AWAY from here... any suggestions? www.myspace.com/0humancontact

    Martha MyKids
    Richmond County NY


    Posted October 8, 2009
    While returning on a United flight from Hawaii to San Francisco with my 14 year old son Ryan who is Autistic, his brother and mother, I was stopped at the check in counter when I was told that my flight had got cancelled. With 10 minutes left to board the last flight back home, I started panicking.I pulled out my confirmation number, e-ticket number and even seat assignment but the agent said the reservation numbers did not match.I them tried to explain that I had my son who has autism and was getting restless and her response was " what is autism?'. With this wait, Ryan started pulling on his mom's hair and scratching her face. After much persuation and explaining to them that my son's tantrums would just get worse the more we waited,another senior agent stepped in, printed another ticket and signalled me in with the rest of the family. I cautiously kept Ryan close to me and at the scanner, he followed me through. This upset the security staff and I tried to explain all about Ryan to her again so we could make it to the baording gate. After I walked through, I signalled Ryan to follow me and as he made it past the officer, he leaned forward to give her a "high-five" and the security office yelled to another agent that "the boy hit me". Once again, I tried to explain things to her but she went on to make it known to all around her of this.At that point, I turned over to Ryan's mom and told her instinctively that "they will not let us get on this flight".We passed a Burger King and picked up fries, Ryans favorite, as a way to calm him down and appraoched the boarding area with great relief as we had finally made it on time for this last flight home for the day. Ryan settled into his assigned seat next to me, put on his seat belt and I propmtly handed him his blanket and magazine to keep him occupied. During the whole time, I tried hard to keep close to Ryan and he behaved well and was now smiling at me.I looked around me and it was a full flight and we would be heading home shortly. Just then, a United Airlines staff approached Ryan's mom, seated in the front seat before us and I could her begging the staff to please let us stay on this flight. To convince her further, she asked me for my business card, handed it to the staff and kept repeating that I was returning from a dental convention and needed to be in the office the next morning to see patients and the kids had school and this was the last flight to our final destination. The staff left and almost all passengers were in their seats by now when another staff approached her again and this time insisted that all 4 of us had to leave the plane. When I intervened, the staff told me that she totally understood but it out of her control. She then told us that the plane would not leave until we left and that she would have to call security to get all 4 of us out if we did not leave. I tried telling the staff that Ryan was upset because they did not have me in their system even though I gave them the confirmation number and all and they were responsible for causing Ryan's tantrums. Amongst all other passengers comfortably seated and relaxing, my family was being singled out or discriminated against because of Ryan's Autism.I even gave assurances and offered to speak to the pilot that Ryan was not going to be a security issue and that we really needed to stay on this flight going home. My options seemed clear - leave the plane voluntarily and wait for connecting flights to my destination or be forcefully removed by security and have Ryan dragged along that could nmake the situation worse and possibly have him detained as at 14, Ryan looked more like an adult. I looked up to Ryan, grabbed his hand and had to literrally force him out of his seat that he rightfully deserved. He screamed and everybody just stared at us. Being a dark-skinned Pacific Islander, I got strange looks and wished I could do more to keep my family on the plane.I felt so helpless and humiliated and as we exited the planes doors, I turned back one last glimpse and to my surprise, saw the United Airlines staff give a thumbs up to her fellow flight attendants with a big smile. In our rush to board the plane, we had skipped lunch thinking we would be home for dinner. Ryan got flat on the floor on our arrival at LA Airport and started kicking and rolling to the laughter of over 200 passengers waiting to board a United flight to Sydney, Australia. Tired and exhauseted, I kept running after Ryan and recalled how he was handcuffed by LA airport security after he ran over to press an elevator button during an earlier trip. This is just one of many instances but so far the most blatant discrimination with total disregard for the wellfare of those discriminated against. Our family has learned to live with these and at times I feel we give in to so much without a cry and maybe avenues as this vent our frustration and anger and give us courage to face a new day with a smile and compassion so why can't our kids get the same?





    Dr Vishnu Shankar, DDS
    Los Altos, California


    Posted July 10, 2009
    My son was diagnosed w/PDD (mild pervasive developmental disorder/borderline autism) at age 2 1/2, 27 and 1/2 months after I started trying to get answers from the pediatrician for what I saw were abnormal or lack of responses from my son. We finally got "early intervention" and with a good ABA program at home, my non-verbal son had made great progress with knowing his alphabet, primary shapes and colors and numbers 1-thru-10, and could complete a 16-pce puzzle...so when therapists said he could succeed in kindergarten, I sent him to the autism-support class, which had 6 kids ranging from age 5 to 8 and from my son's 45 lbs to the largest child's 155 lbs. My son being non-communicative with the others all speaking you would think would help him progress with speech. Instead, when I would make surprise visits to the classroom I found him sitting alone in the back of room, crying, facing the wall. One time I walked in and 3 adults were in what looked like a huddle and 5 children were leaning over their desktops with looks of shock and fright toward the huddle of teacher, classroom aide, and occupational therapist. I could not see my son anywhere and started to panic...then the adults, seeing me, stepped aside and there in the middle of them was my son, sobbing, and looking horrified..as was I. He looked like he was in a potato sack, only his head was exposed and the neckline had a drawstring through it and was tied at the neck. I got my son out of there in a hurry, asking the teacher frantic questions, she replied that that was a "body bag" that my son was in. Like a corpse!! Later she said it was a "body sock," a "tool for occupational therapists to calm autistic children." Penna. law is that they needed parent(s)' written permission for this in advance and if ever considering using it, parent(s) need to be notified immediately before doing so, and only with current permission. I had no idea. Well, it turned out, this was not the beginning of my son's abuse. He had quit potty training at home in his pull-ups altogether. We reverted back to diapers. Sent a supply of diapers to school, but they never ran out. My son quit drinking almost altogether and quit wetting his diapers at home. The only time he would let go of his urine was upon entry into his bathwater. I asked teacher about not needing new diapers, and she said he never wet in school either!! I took him to 2 different urologists, one was a pediatric one. The first one wanted to do surgery on my son, said he would need 3 before the age of 12, saying my son's urethra opening was "too small"...my husband said he was crazy. The second doc and his 2 interns in tow, expressed shock at the doctor who said that. He even did an ultrasound, my son was normal with no blockage. So my son got to where he would only urinate every 3rd day, which was always in every 3rd bath; one time he held on till the 4th day (bath)! I could not figure this out. Then one day the school van driver, a man with a non-verbal autistic 13 y.o. granddaughter he often babysat for, and would tell me anecdotes about, brought my son over an hour late home from school. This was 8 months into the school year, and he was so prompt you could set your clock by him. The trip to and from school/home was 15 mins. So I had been frantic and called the school; luckily the principal was there late and he called the school teacher at home to ask what happened to my son. She said he had left at the regular time from school with the same driver, no problems. I called school transportation,dispatcher said he had no idea why the driver would be late, but called the police and hospitals to see if there had been an accident reported and was told no from all so he called me back to report this. Then I thought my son must be kidnapped! An hour passed, and shortly after the van pulled up to my house. The van driver, for the first time ever, would not look at me nor speak, but kept looking straight ahead down the road as I opened the side sliding door of van. I was shocked to see my baby boy almost hanging by his neck by the seat belt, because obviously he was trying to escape...his legs were folded under him almost completely on the floor, his knees almost touching the floor...but the worst thing was the look in what used to be his big hazel innocent eyes---they looked terrified, bulging almost out of their sockets! Quickly releasing the seatbelt at the same time I was saying to the driver "What happened?" He actually answered: "What do you mean?" I said "you're over an hour late! I called everyone! No one knew where you were!" He gave me a simple explanation that I knew was a lie because the dispatcher had already told me that he did not dispatch this driver to another student location to transport with my son. I did not get to ask him or say to him anything else, because as soon as I released the seatbelt from my son, he lurched at me with his two hands trying to strangle me! Took my son into the house and took off his diaper to run bathwater, always trying to give him that magical bath to hopefully get him to release urine, when I saw sketching on his bottom! Also signs of trauma. I took him directly to his pediatrician, 15 or 20 minutes away, and told him everything. He whispered to me that he did not want to put my son through an exam twice, but would call the new in town pediatric forensic pathologist, because "she would know what she is looking at". He said "Go home; wait by the phone for her call. Her name is: ______, and she'll know what to do." I waited while my daughter (11 yrs her brother's senior) and I tried to keep my son calm, but we learned quickly we had to whisper and tiptoe, or he'd start flailing his arms and screaming in terror. He also refused to keep on his socks, which was the opposite of an obsession of his, to always have his socks on. The phone finally rang 3 HOURS LATER!! My son nearly leaped out of his skin! Then the pathologist dropped a bomb: she would not see my son till two days later! I could not believe this; a girlfriend I called came over to look at my son and she realized we should have my son's injuries photographed because they might fade before being seen by this doctor. I did not even consider initially to take my son to the emergency room because his history was that he resisted going into any new or large or busy building or room...it had taken months to get him into his pediatrician's office without a big struggle, and even then he wouldn't wait long before trying to flee. Since he was very visibly shaken and terrified, I wouldn't even try that. My friend did not have a working camera, and neither did I so no photo was taken. My son clung to me, and I held him for the two days then went to the new doc in town. She interviewed me for about two hours in an office that was not "set up" yet, and she was pregnant, told me she was due any day now. She asked me what at the time I did not understand were pertinent questions, about my son's history since conception, all the family data, and about my son's school program, the building and classroom physical description, the school personnel involved with my son, including the van driver; about my friends, etc. The whole time I was holding my son who was fidgety and wanting to leave. Then she led us to an examination room. She asked me to undress my son and lay him on table and tell me what I saw. I did not understand the question which she repeated almost the same way over and over till I just answered but still not comprehending what was going on. Then she said, dress him, go home, and she would send her findings (report) to the pediatrician, who would then contact me and discuss it. I felt sure that the van driver was being picked up by police within minutes after leaving her office. I thought that was her job, to contact them after seeing the evidence. Only thing is, the "sketching" or marks on my son had disappeared before the doctor saw my son, remaining was the traumatized area, all red, black and blue three days before, now were faded to purplish and pinkish and blue. She asked me at the "exam" if my son had ever been constipated, and I said yes, but thought it was a strange question. I was sure that upon leaving her office that day, I could rest assurred she was having the van driver picked up, handcuffed, and charged by police. Well, days, weeks, and 6 months passed without a word from this doctor to my son's pediatrician, or so he told me whenever I called and repeatedly begged for her report. He said several times he would call her again and ask for it, and admitted he did not get return calls nor a report. I had called the police myself when I had realized neither doctor had, so on the 4th day after the attack on my son, two policemen came to the door and separated my daughter and me, asking us both questions. All of a sudden the policeman with my daughter disappeared upstairs a long time. The policeman with me was asking me all these weird personal questions about why I wanted to divorce my husband (I hadnt even told him we were separated), and it got weirder and weirder; he did not ask me anything about what I had tried to start telling him had happened to my son...he wasn't the least bit interested! I got the feeling something was wrong about my daughter and the other cop going upstairs, where my son was sleeping, and I started up the stairs against the protest of the cop with me. I found the other cop in my bathroom! My daughter looking perplexed, standing behind him. I asked him,"what are you doing?" He said "counting toothbrushes"! Then it hit me; these two cops were there to "find out" whatever they could about my living conditions since my husband left...because they were really there for him! It dawned on me that at least one of them was an acquaintance of my husband's that he had mentioned to me, saying he tore up a ticket for him once. I told them I wanted them to leave, and I asked "aren't you going to arrest that man?" and they said "No." In the meantime, I lost my job because I had to stay with my son. I had sent him back to school because the pediatrician insisted I should, almost immediately after the incident, although it was against my judgment; but, of course, I drove him. Well, about ten days after the incident, I got a call to the school by the principal, who said "Come pick up your son...he's been tantrumming." I went to the school after some discussion, and found my little boy surrounded in the room by adults but with no other children in sight..my son was semi-sitting on a beanbag chair, his shirt all bloodied with dried smears of blood, blood above his eye and in his hair, his two eyes were totally black and blue, and one eye was completely swollen shut, he was sobbing and shaking and his hair and clothes were totally saturated. I bent down to him to pick him up, and said "WHAT HAPPENED?" The teacher bending next to me, smiled in my face, and replied "Nothing." I felt like I was surrounded by evil; and I grabbed up my son, asking "You can't tell me what happened here?" No one answered..but the teacher said "Last week he broke my necklace." She repeated that at least once more, and I said "I heard you! Did anyone not ever tell you to not wear jewelry around autistic children?"!!
    All I could do for my son was to get him away from those people. The classroom aide followed out to supposedly help me. Down the hall, I tried to question her as we walked to my van; she told me something but stopped short of what finally happened that caused my son these injuries. I only wanted to have my son safe; he was sobbing in between screams and gasps for breath. I drove across the street from the school to the hospital and in the e.r. my son was now in terror thrashing at me and scratching me all over and pulled on my blouse so hard it ripped and the buttons popped off, while I tried to tell the triage nurse what happened. She immediately called police and told them to bring their photographer. They arrived, never saying a word and stared at me and my son totally indifferent and now and then would snap a photo. I was told there were dozens of students from a local college who were injured in a catastrophe and it would be hours before my son could be seen. I tried to sit with my son but I had to try to hold my blouse together and hold him while flailing and kicking and trying to bite me and screaming, and hours passed. I could not take it anymore and my teen daughter was home alone panicking about her little brother, so I left and made calls around to try to have my son seen by some other doctor anywhere, but no one would. So I called my estranged husband, told him something happened to our son, and since he was living only a block away, I told him I'd bring our son to him and I needed his help. When he saw him he acted very peculiarly, which I won't go into here, but called his lawyer on his cell phone, and drove away with his girlfriend without a word to me or to his son or a hug for him nor a kiss or anything. I went back to the e.r. to start waiting again, and 7 hrs later the doc saw him, called the forensic pathologist who had seen my son that one time, who told him "Sometimes autistic kids abuse themselves....and ___________ (my son) has a history of constipation." !!!!!!!!! WHAT? My son was so terrified he was trying to throw his little body off the bed; I was trying to hold him on the bed and at one point he succeeded it thrusting his body so hard upward he went over the edge and I caught him just a breath from hitting his head on the hard floor. The doctor started examining him and cut his turtleneck shirt off him, and exclaimed: "He didn't do this! and pointed to the back of my son's upper arm..I went around to look, there were bite marks all over his arm! What the doctor said was so strange, I then realized that he had begun the exam thinking he was looking at self-abuse, even ahead of time! I had never even heard that term before he repeated it from the call to the forensic pathologist, and I still had no concept of what that meant. The doctor counted the bite marks--I was so shocked that I wasnt certain what number he said, but it was in the double digits, either 12 or 16 was what I thought he said, but I could only see 8 from my angle. Then the doctor said to me: "He couldn't have done this, and most are definitely not from the same teeth, there are different mouth sizes and teeth patterns...and they are mostly or all from adult mouths.." Then he said they are going in different directions on his backarm, and my son could not reach where they were to do it himself, even if they were a child's teethmarks, but they weren't. Then he walked away and was busy with other patients. I finally asked someone if there was a phone I could use to find out where my almost-ex was and when he would be getting to the e.r. I had almost fainted at what the doctor said and I felt nauseous. A tech had put restraints on my son because I couldn't hold him down any longer. My ex had gone to his night shift job and said he was trying to get a ride there, but I found out later he had no such intention. The doctor never came back to talk to me and kept the shirt or tossed it, and then I was handed a discharge paper which I don't remember if I ever looked at that night...some time in the future I looked at it and it said "Diagnosis: Self-Injuries/Autism" !!!!!!!! So then I was carrying on at home with a traumatized child daily who would not allow his socks or shoes on him nor go near the exit doors of the house, wouldn't go out in his fenced in yard to play on his swingset or in his sandbox or wading pool or anything that he used to love doing. It used to be it was near impossible to keep him in the house before this. He just huddled in a corner and woke up during the night screaming...for the next FIVE YEARS! No policeman, the pathologist, no one did a thing for my son. Then truant notices were being placed in my door every morning at 7 a.m. after a truant officer would ring the doorbell and leave before I could answer. Then a subpoena! I called the supervisor of special education to say there must be some mistake. He says "Why?" I say "oh, I guess you don't know of the incidents that happened to my son." He nearly deafened me screaming back in my ears, blaspheming God and denying the incidents ever happened, even claiming I was lying about having called the police in and about my son going to the e.r.! I found myself in front of a magistrate who looked at me like I was a monster! Then the school teacher and principal and supervisor of special education gave their "testimonies" and they were not only outrageous lies, but they all contradicted each other. I thought the judge would slam them for their obvious lying but quickly realized she wasnt paying any attention to their stories. She would not let me tell her the facts, as I tried to start she ordered me silent and asked me "Did you call or go to the police? OR NOT?" I said "Yes." I could not afford a lawyer but I had been put in touch with a friend of a friend who had a law degree but was not a lawyer. He had told me this would be thrown out of court because it was not mandatory for a special needs student under state laws in Pa. to go to school till they were 8 years of age. I had voluntarily sent mine early because of the progress he had made at home in discrete trial (A.B.A.) therapy...but that still didn't make it compulsory for him to continue going until he turned age 6, which he still hadn't reached. So I brought this up to the magistrate, and she declared "I read the law, and I am ruling that it is mandatory!" Then she sent this to family court to hear. I thought it would be thrown out of there, but when I arrived in family court about five weeks later, the judge showed bias because of my and my husband's separation and pending divorce, because apparently my husband's lawyer was trying to say behind the scenes that I was a bad mother because I was not getting my son educated by keeping him home. I presented the doctor's note that prescribed "homebound schooling" dating back to the assault on my son. The doctor, however, did not mention abuse or trauma to my son, instead he wrote on the prescription that the reason was "Autism"; which, of course, the school denied, because, in their words, "Autism" is not an excuse to stay home. The doctor kept changing the rejected prescriptions to try to meet with regulations but for allowing my son to stay home to recover from his trauma...so he eventually put on a note and sent directly to the school district: "Homebound Schooling/Diagnosis: Autism Self-Abuse" !!! Unbelievable news to me! But that was when the supervisor said to me"Oh, now that's more like it". My son was never self-injurious. The judge listened to the school district and I had to try to get a concise recall of events in but he wouldnt allow it. He started shouting at me and then ordered my son to be taken to a foster home. Then he added to go get my 17 and 1/2 year old at home and put her in foster care, too! I couldnt believe what was happening and started yelling at the judge, demanding he hear me, and I shouted that "This is America!" You have to hear me and there needs to be justice...for my son!" I went on and explained how I left a good job with local government to take care of my son, and now he was coming out of his trauma, was potty trained, and was starting to have glimpses of calming down. He was back in discrete trial program at home and thriving in it. Then when I mentioned the name of my former boss, who was the brother of the county President Judge, he totally changed his demeanor and dropped everything! ---- My daughter had a nervouse breakdown after this and a phenomenally gifted child, now suffers chronically from this trauma we all experienced. She dropped out of school and threw away her future, not trusting anyone ever again. My son wet the bed and woke up at night and wouldnt leave my side for the next five years. Nobody was ever arrested back then and I call the district attorneys at least twice a year now, but it used to be more often, trying to get someone to reopen the case to do the proper investigation that was never done. No one ever calls me back. I called the county children's services and they say they did an investigation back then (Hell, it was court ordered on me! They never investigated the van driver, his being late, the dispatcher's conversation, the marks on my son, the other things that followed...nothing! I think that because the pediatrician never examined my son and never reported to police which he was compelled to do by law, and the pathologist likewise, who had had her firstborn baby very very shortly after seeing my son two days after "the incident" and took time off and never did a report...they all broke laws and all refused to tell the truth or even talk at all to children's services as far as I know. I just don't understand how you could try to become the best mother to your children, one of them very difficult to figure out how to help, do all the research, start the programs, make progress, and then have the world fall in on you without any one ever caring to really listen and do something that is right. I just saw a lawyer that out of at least a hundred I've contacted, said get the medical records and we will look at them and decide if you have a case...I was only asking how to get a criminal charge with the crime against my child that took place ten years ago?....she told me by doing what I've been..."call the district attorney's office and ask to speak to one of their detectives"...so I had to ask how to get medical records since I had phoned for them many times and always got an interrogation as to why I want them and was told "no" plain and simple. She said call back and DON'T ASK, TELL THEM that you want copies sent to you covering this dateline, and ask what the fee is and send it to them in a check or money order..." So I just did that with a lump in my throat and in my stomach, afraid of what I might read on the records that would upset me and retraumatize me, I opened them and was shocked to read that my (now ex-) husband had made a phone call to my son's pediatrician during our separation, claiming that his wife (me) was going to undergo investigation for child abuse" !!! That was right before the incident that happened!! Now I understood what happened and why everyone treated me like they did, which was incomprehensible back then, and totally unjustified. They all were listening to my ex who was the abusive drug-addicted alcoholic who had physically assaulted me and almost killed my daughter and me in our car on the highway, who had broken protection-from-abuse orders several times, breaking into the house through the cellar, and who said when we separated that he was ashamed of our son "I thought he was just autistic and hoped he might be a savant, but now I've realized he's also retarded...and that's something I can't handle." This is the brilliant nutcase behind all the innuendoes (never a formal accusation against me of anything) that set up everybody against me before I even knew what was happening. I wouldn't be surprised if he paid the van driver to do whatever was done to our son, or if he himself did it, paying the driver to bring our son to him. Something the driver had said that day as an explanation of why he was late leads me to be convinced of this; a little detail the driver mentioned that seemed to be a "Freudian slip". There is no justice. Just last summer my son was abused by his first and only babysitter that I finally found and thought we would try to trust again. The doctor at the e.r. did not even examine my son and children and youth once again refused to investigate or report, because my son is non-verbal and there was no evidence, just circumstantial. My son was raging, a very big boy now, and trying to bite everyone's head off after this incident. He was thrown onto the only psych ward in Pa they claimed to be able to "handle developmentally delayed", but on an adult ward where he was pretty much on his own. I visited him twice a day staying at a Ronald McDonald House nearby. By the 3rd day I was livid! My son hadn't had his soiled shirt or any clothing changed and was already bearded and his teeth were never brushed. He hadn't been bathed at all, not even his face washed. When I started demanding answers, I was told that he hadnt ASKED for these things either to be done or for the supplies to do it himself! My son is totally dependent on me to do these things because of his severe proprioceptive disorder which renders him very uncoordinated and unable to handle tools (like a toothbrush, soap dispenser, razor).He lost 17 lbs in the 8 days he was there!! When I asked every day what did he eat? they answered he didn't seem to have an appetite, but when questioned further as to who cut his food up and chose for him, I was told that a cart was brought up with trays of different food items for the patients to choose from and my son never chose anything! When I asked what kind of food that they presented, it turned out it was food that he either was totally unfamiliar with or was restricted from because of his restrictive gluten-free and GERD (gastric reflux disorder) diet! (which they had been informed of repeatedly by me)! He was suddenly taken off his meds he had been on for 7 yrs and put on two new ones all in 3 days, and discharged. My son got tic movement disorder from this. I got him off these with his doctor who put him on one that gave him fevers. I kept reporting the fever to the docs and they let it go on. Turned out to be a serious side effect, which left him convulsing for breath, then led to a grand mal seizure. My beautiful son is so violent that he is destroying the house with his head butting and we are being abused at the e.r. when taken there because they are fed up with not knowing what to do for my son. I was physically shoved out of the e.r. room because I did not want them surrounding his bed with 6 adults scaring him to death but was cautioning them that if too close he would bite them. I was barred from the area and found out hours later that he was closed up in the room banging his head the whole time on the glass doors. When i asked if they had fed him, they said my non-verbal son hadn't expressed the desire to eat. Then he was thrown out of school months ago and he has been home 24/7. Because I turned down an MRE (more restricted environment) I was contacted by children's services (strategy of the school district) and now they are pushing to put my son into an RTF (residential treatment facility). It is a constant battle and all my child's civil rights have been ignored. After losing another 40 lbs, my son was put on new meds and lost the muscle contractions and jerking and tics, one of so many fervent prayers of mine the good Lord has willed to be. He is still home and is becoming paranoid about people when we have to be around them and he tries everything to avoid leaving the house...I just got behavioral staff into the house to try to get him acclimated to visitors and to get him out of the house. These people who did this to him probably have no idea of how they have committed triple murder (my two children and me), because they took all quality of life from us. They have put me at the bottom of the socio-economic class, unable to ever work and make a penny because of being tied up at home, and in Penna. you DO NOT GET PAID to do the 24-7 nursing, chauffering, bathing, dressing, cooking, feeding, cleaning, advocating, teaching, entertaining, etc. for your own disabled child. And to top all of this off, I was just told by Social Security that because I haven't worked outside the home in the last ten years, I am not eligible for SSD (Soc Sec Disability) even though I would be eligible otherwise, due to an injury. I am not even eligible for the rent-rebate disabled adults get, since I do not get SSI for myself, although my son gets it. Go figure.

    kathryn Mineo
    Wilkes-Barre, PA


    Posted May 8, 2009
    I am a Special Ed teacher in Texas. The people who oversee our special ed programs do not like it when I explain to parents what alternative placement options are available for their children. I am crushed that I am expected to hide important information from my parents. I am a special ed teacher, these are MY kids too, I WANT the parents to know ALL their options. Have any of you, as parents of special ed children, experienced this type of secretive behavior at your schools?

    Saddened Special Ed Teacher
    Texas


    Posted March 3, 2009
    When my son went to kindergarten for the first time, he was glowing with excitment. He could barely contain his enthusiasm as his dad and I watched him settle in for his first big-kid circle time.

    Within a month, he was sitting alone at a table, facing a wall, in the back of the classroom. The teacher kept insisting he needed medication to "calm him down." Thje principal refused to believe the teacher was misguided and the school counsellor told us over and over that he was a bad boy who needed firmer boundaries.

    Even now, years later, it is hard to write this without becoming angry.

    What options exist for struggling families? It took three years for Group Health to finally authorize an assessment to get the diagnosis so the school, his third in as many years, would provide his much needed support. We can't afford attorneys. We have medical coverage but nothing that covers "specialists." What can we do?

    My son's eyes died that year. I don't mean he went blind, but I mean that spark of his soul disappeared. To this day I look in his eyes and occasionally catch a glimpse. But he is changed forever.

    Laura Lawrence-Mobbs
    Olympia, WA


    Posted January 24, 2009
    Yo vivo en El Salvador, mi hijo tiene 9 anos, hace 6 meses buscamos ayuda con un neurolog pediatra y tuvimos el diagnostico de "sindrome de asperger", debido a las conductas "diferentes" que habiamos visto en nuestro hijo. Ya ha pasado por 5 escuelas regulares contando la actual y siempre tiene problemas porque los ninos lo molestan, se burlan de el y los maestros no tienen las herramientas pedagogicas para adecuadas para cuidarlos, actualmente asiste 3 horas a la escuela regular y 2 horas a terapia diariamente, toma el medicamento indicado y hace un gran esfuerzo por enfreentar el dia a dia. No me gusta que cuando algunas personas se enteran de su estado lo traten como "enfermito", porque seria justo que lo trataran como a los demas y le apoyaran cuando lo necesite.

    Elisa.
    El Salvador.


    Posted January 12, 2009
    I have two sons with Asperger's, which is much like autism, they are 15 and 11 years old. My oldest son went to school on September 19th, 2008 and has never returned home. It is now January 12th, 2009 our family misses him overwhelmingly!

    On that day in September, a teacher decided to deny my son's wish to eat his food alone. This was after being told that he would not be allowed to watch a movie with the rest of the class because he didn't finish his school work earlier that week. The teacher then took his meal away and told him to go to the time-out room until he calmed down (he was upset when his food was removed). He became very vocal and another teacher passing by grabbed him and shoved him into the time-out room. They struggled over the door (pushing it back and forth) and my son, being 5'6" and slightly over 200 pounds, was finally able to push the door open and escape.

    Three teachers tackled my son and physically restrained him until he finally calmed down. At this point, the teachers called the police and pressed charges against him for "charging" at the teacher on the other side of the door. Although the teacher was not injured, our state has a "zero tolerence" policy for students abusing teachers. He was arrested and has spent every night since then at the detention center two towns away from here.

    My mother hired an attorney, but the judge was late for her lunch break and pushed the testimonies through as fast as possible then found him guilty. He is now awaiting his sentencing hearing where it will be determined if he will spend the remainder of his childhood in the Department of Corrections or a long-term treatment facility. Whichever place he is sent to, it will be a minimum 2 hours drive one way, just to spend 30 minutes or so with him. As a single parent to several children with only one income and no child support, this will put a significant strain on our lives in all ways imaginable.

    I'm hoping that he is not sent to the DOC, as I have been told by many professionals that children like my son do not survive that type of environment. I believe that I was being told that he would not leave the DOC without serious physical and mental injuries or even death.

    Please keep us in your thoughts and prayers, a bit of a miracle will do us good right about now.

    Sharon
    Illinois


    Posted January 10, 2009
    I am too upset to sleep tonight, because our rights has been violated.
    I have been living in Monterey County for last 31years.
    Today I had worse nightmare in 20years as mother of son with Autism.
    Our right has been violated and discriminated, Not only by some ignoran white male, moreover by uniformed military policeman!
    Since 2004 as part of our son's IEP goal (how to order lunch at the fastfood place),We have been going late (about 3PM) lunch at BergerKing in POM(Presidio of Monterey: Fort Ord).
    Yes, my son can be loud sometimes.....but never told to get out of the place, need to be locked up...by strangers.
    These two white male ,one is in late 30's and early 20's made told my son and me to get out of their county. The man who is in late 30's used very colorful words...called me names " B....F...."
    He even tried to hit me when I got upset and talked back to him for our right to have a lunch where my son wants.
    I phoned my husband to call for MP(military police).
    Even, MP treated my son and I as secound class citizen.
    MP ordered me to go stay away from him while he is talking to the man in his 30's first, after all I am the one who asked for MP.
    MP told me that in "America" people have right to say whatever they want "so call freedom of speech" so I should left the BergerKing with my son.
    Yes, I am an Asian American and I've been an American citizen last 26years by my choice.
    I know that In America, We have same rights regarless of our skin color or disablilties.
    Please help us to get our rights back!
    Susie Post.

    Susie Post
    Marina, CA


    Posted October 15, 2008
    This is happening in our community - we are grateful to the work of the Wyatt Holliday Foundation and a steadfast parent - Bernie Dalien - for bringing it to the public eye.

    Below is an article from The News Tribune newspaper from Tacoma, WA .


    PARENTS PROTEST SPECIAL-ED ACTIVITIES AT PUYALLUP HIGH SCHOOL
    SCHOOLS SAY THEY'RE TEACHING RESPONSIBILITY

    DEBBY ABE; debby.abe@thenewstribune.com

    Is picking up trash, weeding or collecting recyclables part of an appropriate education for special-education students?

    Not if their parents don’t give permission, says Bernie Dalien, a father in the Puyallup School District.

    Dalien has been picketing district headquarters and Puyallup High School since last Monday to let the public know that he believes special-education students are, as his signs say, “doing janitor work without parent’s knowledge.”

    He says his son, 17-year-old Colton Dalien, was routinely collecting recycling paper throughout Aylen Junior High two years ago, but the father didn’t find out until two students told him earlier this year. He wonders if the youth might also have been collecting litter.

    Dalien says he plans to picket all junior and senior high schools in Puyallup.

    “The demeaning treatment of these students has to stop,” Dalien said. “Most children with disabilities don’t have the ability to self-report, and the district takes advantage of that.”

    Read more: http://www.thenewstribune.com/front/topphoto/story/506988.html
    Originally published: October 13th, 2008 12:55 AM (PDT)


    Denise Fulton
    Lacey, WA


    denise



    Posted October 6, 2008
    I have a son with not only autism but Down Syndrome. Try getting a child dual diagnosed. Most Dr. do not even have a clue that the two can co-exist. My son was nine years old before he got a true diagnosis. However therapist that work with autistic kids would approach me and ask if my son were autistic even though his physical appearance was Down Syndrome. At the age of 3 my son started having unusual behavior. He stopped responding to his name, started toe walking, slapping himself, rocking his body, stemming, stopped sleeping through the night, and would scream inconsolably for no reason, and he does fecal smearing. I have taken my son to experts that have told me that they do not treat autistic children. I have had eye Dr.'s tell me that they could not do an eye exam because my son cannot follow instructions or respond to their questions. Funny. How do these DR.'s ever declare that an infant needs glasses? Especially since babies cannot talk either. I had a teacher tell me to accept my son may never learn to write or his alphabet. I had a school therapist tell me that she though it was a waste of time to try to teach my son to write. I told the school I did not want her working with my child. Well I taught my son his alphabet and now we are working on writing letters. I have believe in my son when no one else has. As his mother what kind of mother would I be if I just gave up. I will not give up on my son until I am in my grave.

    Cyndi



    Posted October 3, 2008
    Families across America with children who have Autism are being systematically raped. It begins in the medical field when doctor give you the diagnosis of Autism on you child and then says, “I'm sorry to tell you that you child has Autism and there is nothing that can be done for them.”

    You then turn to your insurance companies to seek help in providing services to meet their biological and physical needs, only to be told, “Sorry we don't cover Autism, you will have to pay for those services privately (out of your own pocket).

    When you child reaches school age, you think, “Whew, well at least now my child will finally get the services and help they so desperately need.” Wrong again, as the majority of school districts will fight you tooth and nail NOT to provide services or programs that help to meet you child's “unique” needs. While this is against federal law (IDEA 2004), what can you, as a parent on a very limited low income, do to stop it – very little.

    NCLB (No Child Left Behind) mandates that ALL school districts (whether they are Title I or not) be held accountable for academic achievement for ALL students. However, there is a loophole that was developed by the National School Board's Association that allows ALL school district to developed a “N Size” for subgroups (special education is one of these subgroups). What does this mean? It means that if your child is in a subgroup, then the school district can get around the accountability clause mandated under NCLB by NOT counting their testing scores in with the rest of the school district's testing scores. By not having to count those subgroup scores, a school district and/or campus is NOT penalized for not meeting AYP (adequate yearly progress) on ALL students, and thereby can reach the desired rating (“exemplary,” “recognized,” or “academically acceptable”) for that particular school. In the meantime, your child in such a subgroup is not meeting AYP and the school district is NOT being held accountable for it. You child will be passed on grade to grade without meeting the content standards set by your state and their achievement gap will grow with each year's passing. Where will your child be at graduation time? An adult who will have the necessary educational and life skills to be able to function in our society.

    Until this loophole is permanently closed, no child with Autism will ever have the afforded chance of receiving an “appropriate program or service s that meets ALL of their unique needs in order to show progress and receive educational benefit.”

    What can YOU do? Write the President, Secretary of Education, Congressmen, Senators and any other political power to be and DEMAND changes in the “federal” laws that will close this loophole and fully protect our children with Autism. Also educate yourself on the laws found in IDEA 2004, NCLB, State Board of Commisiona, local State Codes, in order to advocate for your child at ARD meetings to ensure that your child's IEP is appropriate and meeting ALL of their needs. Finally, NEVER give up on that fight until ALL of your child's needs are met.

    Finally, believe in yourself and your child, and always remember find a support group to help you along your endeavors during this process!

    "In the confrontation between the stream and the rock, the stream always wins, not through strength but by perseverance."
     
    Jewles


    Jewles
    Plano, Texas


    Posted October 3, 2008
    I have four children on the spectrum. I have MANY Stories!!! When My son Matthew, who has severe autism, was 3, we stayed at a hotel over night in GA. on our way to Disney World. The stay included a buffet breakfast. We woke the next am and went to the dinning area. It was not very loud but you could hear silverware scraping and tapping plates. Matthew was very uncomfortable and made it known to us the only way he could...by screaming. My other children were eating, Matthew was even eating in between screams. A waitress came over to our table and asked us to leave because other guests were uncomfortable because my son was so loud. I wanted to stand on the table and scream at "the guests" the reason my son was loud. We told the waitress that we weren't leaving. My son had just as much right to eat as the other guests. My husband told her she could call the police if she wanted to but if she did, we would file a lawsuit!!! We stayed until all of my family finished eating!!!! I was SO ANGRY!

    About a year later, we tried to attend a movie. Matthew was doing fine and all of a sudden started melding down. My husband took him out of the theatre to calm him down and was going to bring him back in after he was calm. He never came back in, and the movie ended. I went out to our van with our other children to find my husband very upset. Apparently on the way out of the theatre, a woman observed my husband carrying Matthew, kicking, thrashing, and screaming. She called 911 and reported my husband was obducting a child. Matthew was calm and my husband was about to come back in when 5 police cars surrounded our van. They made my husband get out of the vehicle. An officer got in our van to "talk" to Matthew who had no words at the time. The officers had to verify that Matthew was our son. They could not recognize that he had autism, only that he didn't respond. ("A normal frightened child may act the same.") We didn't have any pics in our wallets because pics were extremly difficult to take. 45 minutes later the police called my husband's place of employment to verify that we had an autistic, non-verbal son. Our family members couldn't be reached at the time. They were finally convinced Matthew was ours. 5 minutes after the police left, the news crew pulled in! My husband was too upset to talk to them. I wish I had been there to shout at the camera!!!!

    Things like this are so heart breaking!!! As if autism wasn't enough in and of itself!!!! I've learned that many people need far more teaching, and are far more impaired than any of our precious children that have autism!!!!



    Virginia Blevins
    Orange, Virginia


    Posted September 18, 2008
    I have been fighting for my son to have a classroom that he can handle. He is sensitive to fluorescent lights and cannot tolerate strong chemical cleaners or molds. School system persists in characterizing me as overwrought hysterical mother who has endless list of demands which are nothing but "excuses" for my child's behavior "issues" . I tell them that he would not have these "issues" if he were in appropriate lighting and clean air. We are now homeschooling and it has really helped my son develop. The school never listens to my assessments of what my son needs, refuses outside assessments and continually put him in placements of their choosing despite my misgivings. As a result my son has had serial placement failures which are blamed on his "not wanting to go to school". The ignorance and game playing of special needs placement politics is unendurable.

    Evelyn



    Posted September 17, 2008
    Hi - I'm so glad this forum exists for me to share my story. I am the very proud mother of Kyle, a 15 year old boy with autism. Kyle has been through a lot since coming into this world 12 weeks early and weighing only 2 lbs and during these many years I have encountered numerous doctors with varying degrees of experience with children with special needs. On Thursday, Kyle broke his wrist in gym class. The school did not call me (another long story) but I finally noticed he was favoring the hand/arm after dinner. He went for xrays at the local ER and they gave me a splint and told me to follow up with the local orthopedic group the next day to have the wrist set and casted. Kyle had his wrist set at 1 PM on Friday. By 7 PM that night he had managed to pull the short forearm cast off of his arm (he was quite proud of himself and told me that he "shook it off"). Anyway, I called the answering service for the orthopedic group who had treated him earlier that day and was connected to the doctor on call. I introduced myself and said I was hoping we could arrange a convenient time for him to meet us later that night in the ER to reset his wrist and apply a longer cast (closer to the elbow) that would be more difficult for him to try to remove. The doctor immediately told me no he wouldn't do it as he didn't feel it was an emergency and that I should tell Kyle to keep the splint on and I could have his wrist reset in the office anytime between Monday and Wednesday. I explained I was concerned that Kyle would cause more damage to his wrist by overusing it and that he would not keep the splint on - it was only secured with velcro strips - no challenge to remove for someone who just slid a cast off their arm. I explained Kyle had autism and thought the longer cast would help. His response to me was, "a child with autism is like an animal - he can't talk, you can't use logic with him and he is going to be uncooperative. What do you want me to do?" I replied, "did you just call my son an animal?" He said, "are we having an argument or did you call me for advice?". I said, "I do not want your advice and do not want you to treat my son." The physician hung up on me. I have since filed a formal complaint with the NYS Dept of Health for professional misconduct as well as with the local hospital Bd of Directors. Later on that evening I took Kyle to another hospital and he did have his arm reset and a longer cast applied. The nurse and doctor who treated him both cried and hugged us when I told them our story. The doctor said the other one was wrong to even suggest that a wrist fracture could wait that long to be set and he said a few other things about him as well! If this doctor had no or little experience with a child with autism then be honest and say so but there is no reason for that type of disparaging and hurtful remark to a mother seeking medical care for her son.

    Melissa Keeports



    Posted September 20, 2008
    My daughter Sydney, soon to turn 6, has autism. Last year she was having fevers, and swollen lymph node on her neck. Her balance worsened over the course of several months and she held her ears constantly, she was constantly tired and laying down. Her pediatrician whom I thought well of at the time, found nothing wrong with her and ignorantly labeled her symptoms as typical for autism.

    One morning she awoke and her left eye was red, however no drainage. I took her to school and within 5 minutes of dropping her off I received a phone call from the school nurse telling me that she must leave school and see a doctor for her pink eye. I told the nurse she doesn't have pink eye, this is stemming from her other symptoms that her pediatrician believes is part of her autism disorder. The school nurse still insisted I come and get her and take her to the doctor. I was infuriated as it just so happened we had an appointment with physician in Austin on the following Monday and that day was a Thursday. As most families with autistic children, we are on one income and I could not afford to take her to the doctor on that day as well.

    Well as the day progressed her symptoms worsened. She was slamming into walls, tripping over things constantly including her own two feet. I called the physician's office around noon and they said to go on and bring her in. It turned out that Sydney had a horrible double inner ear infections that had been active for quite some time. Not middle ear infections, but INNER EAR! This means past tympanic membrane and then past the oval window, not the typical eustacian tube ear infection. You can not see an infection like this with only an otoscope. The physician immediately began intense antibiotics and steroid regiment along with supplements.

    Sydney was on the road to loosing her hearing and her pediatrician blew off her symptoms and chose to blame them on the autism. We now see physician only! He refers us to a specialist if and when neccessary. It took Sydney's infection 3 weeks to clear up.



    Austin


    Posted September 20, 2008
    This was posted on my blog at www.debstake.wordpress.com shortly after this happened. I tell you this because of the time variations. Apparently my son has not been the only child with autism that has been discriminated against by this so-called "Christian" organization. My husband and I are seriously thinking of filing a lawsuit against the the local Y and the National offices.

    Deborah
    ===================================================================================================

    Last Tuesday the 20th of August, I along with my son and his BT (behavioral technician or TSS) went to the Carlisle YMCA for some recreational swimming. Well it seems there are issues with JR going into the ladies changing room with me since he is aging. Of which I completely understand. What I don’t understand is how anyone can consider a bathroom a “family changing room.” Below is my letter to the director of the Carlisle Y terminating our membership. I wanted to make this issue public to the local autism community in case you contribute money via United Way or have a membership with the Y in the event that this offends you as much as it does me.

    ===================================================================================================

    28AUG08

    To: Executive Director YMCA

    Carlisle PA 17013


    My family and I are terminating our membership with the Carlisle YMCA. I believe you have a right to know why. Initially it was lack of use and cost. However, after the events of 20AUG08 there is another reason to add to this list, discrimination.

    On the 20th my son, his TSS and myself came to swim (around noon) during the recreational swim time. As it turns out while we were getting ready to leave a gentleman (slim build, 5′8″ reddish short hair) informed me that I can no longer take my son into the ladies changing room, due to the uncomfortable nature of the situation. Of which I do understand, however the “family changing room” that the YMCA has is a bathroom pure and simple and no amount of superficial surface modification to a bathroom is going to turn it magically into a family changing room. Furthermore, it is insulting to think that modifying a bathroom would somehow make it ok. It doesn’t.

    Now, I will admit I should have sent my son in the men’s changing room with his male TSS, however typically when we do come to the Y it is usually my son and I and frankly I didn’t even think to ask his TSS if he would take him into the men’s changing room. My son cannot go into a boys changing room alone as he has autism and he is non-verbal. Being non-verbal makes him an easy mark for any pervert who may have a membership to the Y.

    In my opinion what the YMCA, under your direction is practicing is nothing short of discrimination. According to dictionary.com one definition of discrimination is: “treatment or consideration of, or making a distinction in favor of or against, a person or thing based on the group, class, or category to which that person or thing belongs rather than on individual merit: racial and religious intolerance and discrimination.” Your condoning; even encouraging, of the policy of the YMCA falls under the “category” (a disability; i.e. autism) of discrimination.

    Enclosed with this letter is the form required by the YMCA to terminate our membership. In addition I am enclosing an article that was in Saturday, August 23rd’s Sentinel is a piece on autism and discrimination.

    As a parent of a child who has autism, I have been dealing with this sort of thing since he was first diagnosed at the age of 3. Frankly, I am tired of it and refuse to abide by societies narrow-minded attitudes when it comes to the autistic community. Our children are unique and intelligent (and no, most are not mentally impaired) individuals, however they have issues that make it difficult for them to process sensations the way you and I do. Everything comes into their brains at one time and they have difficulties separating sight from sound, from touch, from smell.

    I will be informing, via my on-line group, the on-line group of the Harrisburg chapter of the Autism Society of America and my blog that families in the area who have a child with autism may want to reconsider their financial contributions and their memberships to the Y as well.

    ===================================================================================================

    So is this discrimination or am I being overly sensitive to the situation? If you care to express your opinion to the Carlisle YMCA please go here.

    Deborah A Delp



    Posted September 12, 2008
    My grandaughter who is age 9 was a victim of discrimination while we were on a Carnival cruise this summer. She was denied the right to be with the other kids in the onboard KiDS CLUB because they did not have time to deal with one child with issues. She was only welcomed if we stayed with her the entire time and supervised her ourselves. When asked if she could stay in the play room with the younger children and read books, we were told they would allow her to stay one hour. So we told them to forget it and we did not need them! We will never take another cruise!

    Brenda Zumo



    Posted September 12, 2008
    My son was denied a free appropriate public education. He was placed in a temporary classroom for children with autism, and the teachers had no experience with autism. A typical child would not be placed in a classroom where the teachers did not know how to teach a typical child. This was an obvious case of discrimination against my child and all children in his classroom with autism.`

    Jenny Cochrane



    Posted September 12, 2008
    The Standards of Care for children with ASD (Autism Spectrum Disorders)set by the AAP (American Academy of Pediatrics) suck! Too many doctors are unaware that many metabolic disorders are being misdiagnosed as brain disorders such as autism, ADD, ADHD, bi polar, PDD etc. These Standards of Care are negligent toward children and a provide no help toward finding the cause of their symptoms. If the Standards of Care were improved to include metabolic tests, then many children will not be incorrectly labeled and left behind. Once a child gets a "brain disorder" label, their medical needs are tossed aside and that child is left to rot away unless their parents pay to figure out the problem on their own. The testing the AAP needs to include is as follows: Food Allergies and intolerances, organic acid test, comprehensive stool exam, urine porphyrine and hair analysis to test for heavy metals. There are more tests that would be helpful, but these few tests are rather inexpenisve and have proven very helpful in diagnosing our son. Our son is normal as long as we keep certain proteins out of his diet. He has occult blood in his stool and high inflammatory markers showing that he has some sort of bleeding somewhere in his intestines. His heavy metal tests show heavy mercury toxicity, and our pediatrician is now referring us out for chelation and to a pediatric GI specialist. This would not have happened if we didn't investigate his health on our own. The AAP has been negligent towards these kids. Also, the psychiatric community should be called to the mats before they label any other children with brain disorders before they have been tested for metabolic disorders. Even the Mayo Clinic says that too many metabolic disorders are being misdiagnosed. Doctors and pychiatrists need to confess they have been wrong for many, many years and then fix their inadequacies. These children have been abused and neglected by the very people who have sworn to help them. It is a shame!!! Shame on the people who have turned their backs on these kids for arrogant and/or political reasons.
    SHAME ON YOU!

    maggie wallace



    Posted September 12, 2008
    My beloved 5-year-old son has autism. He has a severe delay in speech and some social issues, although he becomes more social daily. I have had to fight doctors and educators tooth and nail for all the services he has received and I am happy that he has been in Early Intervention since 18 months. It took a while to convince his doctors that something was wrong with my son, finally after months of telling me how their opinions as doctors outweighed mine, they signed a "prescription" for early intervention. I have since removed my son from their care and signed up with a DAN doctor and a pediatrician that understands the DAN protocol. I thought being in a language-based program was part of the puzzle for him and was happy until he reached age 5. At that time my district wanted him in their program and no matter what I said, they remained adamant that he be switched. I visited their program and saw that it was not appropriate for my son and stated this at the meeting with school officials. I prepped, brought doctor’s notices, etc...I might as well have been speaking another language, they remained steadfast and had to audacity to tell me, a mom, they knew what was best for my son, a boy they never met. I have my son in a new district now and he continues to grow everyday. Although I can't forget that one woman on the board told me that she was going to suggest that my son be "ungraded" (he is going into first grade) because she said "most of these kids don't graduate high school so it won't matter". I remember crying about that and my husband wanting to go down to the school and lay into them... in the end, my mother, the voice of reason and her grandson's biggest advocate said,” you should've asked her for her lottery number picks since she can predict the future, people like that are the ones who need extra help". LOL. Every time someone says "he'll never do this, or be that, etc.", I just smile because he surprises me everyday with just how much he does know.

    Deb Stone



    Posted September 12, 2008
    My name is Donna and I have a 14 year old autistic son named Ryan. Not sure if this fits within the realm of what stories you are looking for, but wanted to submit this anyway. Back in May I was with my son at a Greyhound bus station in Baltimore waiting for my daughter's bus to arrive. We were inside the station, away from the passengers waiting to board buses and away from the sitting area. We were standing at a pair of double doors looking out to where the buses pull in. My son was having sporatic outbursts. Suddenly I kept hearing someone shouting "ma'am, ma'am", then he proceeds to say "I understand the situation, but you need to leave". First of all he "understood the situation", but proceeded to tell us we have to leave. Didn't ask us to leave, but said we had to leave. After the shock wore off, about a day later, I really got angry about the situation. I wrote Greyhound a letter expressing my concerns and disbelief, I sent one to the station where I was waiting and the corporate office in Dallas. All I wanted was an apology and I have never gotten any response whatsoever. I tended to wonder, if a woman was sitting there in the waiting area with a crying baby, would she be asked to leave and wait outside?? Not to mention it was a damp, rainy afternoon. Thank you.

    Donna Dulski



    Posted September 9, 2008
    Accepted practices are sometimes among the worst because they pass as wisdom. In their time of open-ended acceptance their destructive influence creates a pattern of intolerance – a kind of ubiquitous bigotry.

    We operate under these intractable ideas for such long periods of time we almost begin to believe they are the norm and we are the abnormal. It’s only when we step back that we see them for what they are: social injustices.

    I have two sons with autism, 10 and 13. I also have two attorneys, one for each boy. Each year at the annual IEP (individualized education program) ten to twelve people sitting facing each across a divide that cannot be breached. On one side are the many teachers, administrators, school officials and their legal counsel. On the other side my wife and I sit with our lawyer, surrounding by fat, 3-ringed binders and other assorted materials.

    It has taken us hundreds of hours of preparation to arrive at our position. We make our requests, outlining what will, and will not work, and why. Then watch as each is denied. Well-documented educational tools that would help my boys are denied out of hand.

    The prejudice of the school officials becomes a small hard knot in my stomach. Deep down they believe children with autism are not capable of growing and learning. They are “professional” educators and the sooner families with autism understand the intrinsic limitations of their children the better.

    As much as possible we pursued the denied therapies and our sons make good progress. But the bigotry our boys face daily will only be corrected when education includes addressing the unique challenges our children face.
    My sons deserved to be treated and accorded the same rights to an appropriate education as other children. It may take slightly different forms, but please don’t deny the ideas and therapies that help.

    Ed Arranga