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