Wagons “Move Out... hhhhooooooooo” or My Son's New First Grade (More on My Son Part 33) **About the title: Couldn't decide whether to continue the whole Wagon Tran theme last Blog Entry or start new, so pick whichever you like, either will work just fine. AAAWWWWww the whole mental and emotional exhaustion of our last IEP meeting. My wife & I took the weekend off discussing or even worrying about it, it kind of bit us Monday morning, but turned out just fine. That is it in a nutshell, if you want more please... read on. The morning of the IEP, well my wife and I both had the day off so we both took him to school, he seemed to settle down alright, with no big issues. So we left the school went to run a few errands and later returned to the school about 15 minutes before the start of the IEP. We arrived to find our advocate we contacted already there waiting on us and anxious to sit down and discuss a few things with us prior to the full meeting. About 3 minutes before meeting time, all the other members started filing into the room so let's count: (1) My Wife; (2) Me; (3) Advocate; (4) School Psychologist; (5) Home ABA Therapy Coordinator; (6) School ABA Therapist 1; (7) Teacher; (8) Autism Resource Coordinator for the county school system; (9) School Principal; (10) School Speech Therapist; (11) School Occupational Therapist; (12) School Autism Itinerant. Yesirreee bob, we had a room full of people. Let the discussions (negotiations) begin. Let me start by saying the advocate we had was impressive. At more than one during the 2 hour meeting he would taking notes on the primary conversation but would also catch a few little side bar discussions other people were having and when the primary conversation was shifting focus he would take the opportunity to address the two people he overheard having the sidebar and say something to the effect of: “excuse me, did I hear you telling _____ that you were going to try ______ (or increase that amount of time for his Speech, OT, whetever the other two were “sidebaring” about); or I don't think that would be a good idea and here's why”. And I mean those people were whispering very quietly during the main discussion; but he was also so tactful about it. It was impressive. One thing that I feel really helped spur us on to work together was the almost tearful input from his teacher. When asked how she felt about his current behavior and her ability to implement the new ideas and techniques being suggested her response was something to the effect of: I am overwhelmed, I would find it very difficult to implement these by myself and still effectively be responsible for the education of the other students in the classroom.. I can easily understand how she would feel that way. [Deep down one thing that I feel might have caused her response to sound so emotional was that she also has a son with mild autism, who is just entering the ECD program at the school this year and maybe it made her ponder that this could be a challenge she might be facing in just a few years.] The county school's Autistic Coordinator assured her training and assistance in this area. To keep this relatively short by the end of the meeting there 9 things on a to do list. Some related to changes to be made starting Monday morning to try and remediate or at least stop his worsening behavior at once. If effective these would be rolled into the new IEP plan at our next meeting, which I will address below. Others would be beneficial in performing a new FBA to also be included in a revised IEP. In the next 4 – 6 weeks, we would meet again to discuss the findings of the new FBA, and review what other changes and techniques were tried and their effectiveness. So far everyone has followed through on the plans: When my wife took him to school in the morning; the entire classroom had been re-arranged. Our son's seating assignment had to be moved further from the “reading corner” of the room. So to minimize singling him out all the children were assigned new seating. This is also where we got bit a little. Since we made a conscious decision to try and de-stress and not think about the IEP over the weekend, we forgot we were supposed to bring some reward time play items to school for him to earn over the course of the school day. So since my wife usually takes him to school, this stressed her out instantly since she had to run home select some special items for him and return them to his school. On her return she found him under the table again refusing to do his work all over again. About noon yesterday I received a call from the county school's autism coordinator who was calling to let me know he had completely turned his day around and was having a terrific day. For at least this week an additional resource has been assigned to him every day all day to help him understand some of the new rules being put into place for him and help train his teacher in how to effectively implement these new rules and some techniques she can try to make the rules effective. This person will also be taking data logs and observation notes for use in the FBA, along with those of the school's OT, Psychologist, Autism Itinerant, Speech Therapist, teacher and even the principal is being required to observe occasionally and take notes over the nest few weeks. A couple of the suggested social stories have already been written and copies sent him for us to read to him at home before and after school as well. He came home having the best day he has had since the first day of school this year. He was happy and smiling and actually very excited to relate his day to us (partially through words and partially through re-enactments of his events that day. And also very importantly he woke up this morning excited to be going back to (as he puts it) “my new first grade”. As for me I am so happy about it I want to cry for joy every time I think of how this is hopefully a sign of a much better school experience for him.

The walk is the Central Valley Autism Speaks walk. I posted about Autism Speaks on our Yahoo Board a couple weeks ago with a link to view their tax returns to see where the money goes. Although SNAFU has no opinion, my PERSONAL opinion is that they do no represent what I believe people with autism need. The founders of Autism Speaks have a grandson with autism (their daughter's child). Their daughter believes so strongly that Autism Speaks is doing the wrong thing, they have a pretty public ongoing fued about it and the daughter has spoken publicly against Autism Speaks. Autism Speaks spends most of their money on genetic research. They are looking for genetic markers to develop prenatal testing to determine if a fetus is susceptible to autism. This is disturbing since the abortion rates for fetuses with Down Syndrome is around 90 percent. They are also into paying HUGE sums of money to celebrities to attend their functions. The money from the walk does not stay local. It goes to their corporate office back east. It pains me to see so many people raise money for what they think is a good cause and not knowing where the money goes. The coordinator of the walk is Michelle Rodriguez - a very sweet (and overly trusting) person. She is a FB friend and on our SNAFU list. That's my personal opinion, but you should check it out yourself. You should google the phrase "autism speaks doesn't speak for me", "why I hate autism speaks" and "katie wright autism speaks.". Katie Wright is the daughter and also the parent of the boy with autism.

Petition Mandatory bus Aid for special need Children and adults http://www.thepetitionsite.com/1/mandatory-bus-aid-for-special-needs-children-and-adults

Circling the Wagons (More on My Son Part 32) Wow, so much going on. To Start with... at a recent visit to the ENT office, some testing showed evidence that our son had a deformation in his Eustachian tubes. This abnormality has been causing negative pressure in his ear. What this can cause is distortion, but amplification of sounds. So not only are most sounds much louder to him they are not as clear. Imagine. What an overload and the amount of confusion this can cause someone, now imagine the effects it can have on a child with autism. I mean... WOW! He is having tubes put in is years (for the second time in his life) today as I am writing this entry. Last week, I was schooled. I got a very humbling reminder of how somethings must seem to my son. At work, we are researching a newer, different methodology for handling the enormous amounts of data we generate and store. I am having a very rough time wrapping my mind around it. Trying to implement this new methodology to our data is really racking my brain. During a meeting with several other people, each presenting a different solution, I sat there and thought “WOW this is overwhelming, my son must be bombarded with these feelings most of the time most days.” It pushed a reset button in me that probably needed to be pushed. Now, his school issue. His behavior in school, has never been this rough. I mean NEVVVEEERR. We new this might be a difficult year for him. Although, he is used to the school environment, the fact that the regular first grade class he is being mainstreamed into is more structured than his ECD or Kindergarten classes have ever been. The first week was not so bad, but progressively has gotten worse. He refuses to do his work and will go under the table and say “it's too hard, I can't do it” or will remove himself and go to time out on his own. On at least 3 occasions he has been removed from the classroom and sent to the office. Needless to say after the first time this happened we began focused discussions with his teachers. His most disruptive behaviors occurred with regularity in his PE class (hitting, pulling on other students, etc...). We kind of figured, probably hoped, that it was just a very different environment. Never had to be outside and told these children can run and do this activity, but you can't right now... and stuff like that (ie organization in an environment where he usually for the most part had complete freedom). Well, we began circling the wagons... his IEP and support team. In his IEP, we have never had to implement a Functional Behavioral Assessment (FBA). Well, we have had several people obesrving him to collect data over the past 2 weeks (school psychologist, 2 autism itinerants, therapists, teachers). Now the educational part for the past week I have been passionately searching and voraciously reading everything I can find regarding how FBA's on conducted, and done for IEP's with a focus on autistic children. I think it is going to be an interesting, but productive IEP tomorrow. I have faith in most members of his IEP Support team.

Every once in a while I deal with what I call little autism jabs in the heart. The last 2 weeks I've had a couple because of the beginning of school. My daughter turned 5 and unlike her peers she isn't going to start kindergarten. I looked in envy and sadness as people shared their first day of school pix of their own children and wondered why my daughter couldn't share in this experience. I know there are special day classes, but I wanted her to be in an general ed. kindergarten. It's like another boat missed, another opportunity passing her by. It's like life is moving on without her. I love her so much and experiences like these can make me so sad.

http://www.lenababy.com/Default.aspx It analyzes speech patterns for early detection. Amazing!

From a fellow advocate No child is "perfectly" whole in mind, body, spirit, ability...nor can any child meet all of a parent´s hopes and expectations. Yet there is a wholeness of each and every child, a wholeness that is unique and brings with it a unique set of possibilities and limitations, a unique set of opportunities for fulfillment. -Fred Rogers, Mister Rogers´ Neighborhood

For Parents For Parents What you can do to protect your child? Sign a No Consent Form: It is important that you make it clear to your child´s teachers or other program staff that you expect an environment free of aversives, non-emergency restraint, and seclusion. You should also expect the elimination of emergencies to be a priority. To put this message on record, sign and date a No Consent Letter and have it placed prominently in your child´s IEP or treatment plan. If you have seen warning signs which you believe may result from the way your child is treated at school, or in any situation where you are not present, it is important to ask questions immediately. View a sample No Consent Letter (.doc). Monitor Your Child's Program: Review your child´s records (especially the contents of the education and/or treatment plan, and any "incident reports" in your child´s files), and make visits during which you carefully observe all aspects of your child´s day. Keep careful records. Document and date anything your child says or does that concerns you; take and date photographs of any suspicious injuries. Share your concerns with your child's physician, psychologist, or other health care provider. Report Abusive Practices to: State and Local Agencies- If you have witnessed, or have evidence of abuse of a child, you have the right to call the police. The rule of thumb is: if you would call for police intervention to stop this from happening to a child without disabilities, you should call to stop it from happening to a child with disabilities. Your State Education Agency (SEA) will have a help line, hot line, or other assistance program to which you should report at once. Disputes involving your child´s rights under the Individuals with Disabilities Education Act (IDEA), state special education regulations, or state school disciplinary laws and regulations can be addressed through the State Education Agency´s impartial due process hearings. You have the right to request a hearing concerning your child´s placement or program at any time, and your request must be granted promptly. Requests are made by sending a letter to your child´s school principal, with copies to your district´s director of special education and/or superintendent. Your letter should state the problem and your proposed solution. States also may have public interest education law projects and disability law projects that can provide you with important information and may be able to provide direct advocacy. Some states have established an Office of the Child Advocate to investigate allegations of systemic abuse and neglect of children within that state´s service systems. This can be an important contact, especially when a group of parents comes forward with similar complaints. All 50 states, The District of Columbia, Puerto Rico, and the federal territories have a protection and advocacy system (P&As). P&As are mandated under various federal statutes to provide protection and advocacy on behalf of individuals with disabilities. To find your state P&A contact information to obtain assistance, go to the National Disability Rights Network website or call (202) 408-9514. Reporting to Federal Agencies- The Office for Civil Rights (OCR) in the U.S. Department of Education provides the primary administrative enforcement for Section 504 of the Rehabilitation Act and for the Americans with Disabilities Act (ADA), two civil rights statutes that address discrimination, equal access, and reasonable accommodations, as these laws apply to schools. Section 504 prohibits discrimination against persons with disabilities on the basis of their disability. To demonstrate violation of Section 504, parents would need to show that aversive techniques, restraint, or seclusion were used on students with disabilities who engaged in certain behaviors, but were not used on students without disabilities when they engaged in similar behaviors. The ADA addresses the need for accommodations and access in public places and might be involved, for example; if a student is restrained or secluded "for his or her own safety" when environmental modifications would have made this unnecessary. Complaints about the use of restrictive and unsafe practices, and lack of the accommodations that would make these practices unnecessary, can be lodged with OCR for investigation. If necessary, all OCR and SEA hearing reports may also be appealed to federal court. Complaints under the Civil Rights of Institutionalized Persons Act (CRIPA) can be made to the Civil Rights Division of the U.S. Department of Justice (DOJ). CRIPA gives the DOJ authority to bring legal action against state and local governments for permitting dangerous conditions and unsafe practices that violate the civil rights of persons placed in publicly operated facilities. Join With Other Advocates Nationwide to End Abusive Interventions: The Alliance to Prevent Restraint, Aversive Interventions, and Seclusion (APRAIS) was founded by major national and state disability organizations to address prevention from several directions. We are working at the national level to assure children with disabilities of equal protection across funding systems and service delivery settings, and of adequately staffed and funded systems of reporting and accountability to back up these protections. We are working to convince the states to raise the bar on child safety. In addition, we are partnering with individual parents and advocates, encouraging them to support and inform each other and to act as local watchdogs. Keep APRAIS informed of what is happening in your state, to your family, or to suggest a link to an article of interest. In turn, we will keep you informed of upcoming opportunities to bring about long-overdue changes in the laws and regulations that should protect our children. Inform APRAIS of an incident involving restraint, aversive interventions, or seclusion by e-mailing Barb Trader at TASH. Your story will be added to our database of incidents. Until all children with disabilities are equally protected under the law from abusive practices - regardless of their disability, where they live, or which funding stream serves them - parents will need to employ a combination of these approaches to ensure their child´s safety. 1 of 1 File(s) Sample_No_Consent_Letter.doc

I need major help from parents who can sympathize with my situation. Jaden is 4 and is not potty trained. He has no interest in trying. He just recently was able to tell me "pee pee" or "poop". I took that as a great thing because now he knows what it is. He started giving me diapers when he felt it was time to change it. All these things made me think him trying to use the potty was right around the corner...it's been a good 6 months now and he won't even sit on the toilet:( Anybody has any advice or helpful hints I can do to get him started?

My new favorite gluten-free blog: http://glutenfreegoddess.blogspot.com/ I have been experimenting more with gluten-free recipes since Wynn is asking for a bigger variety of foods lately. This blog is written by a woman named Karina who has battled intestinal disease for most of her life and has finally found health on a GF/CF diet. Her recipes are are more for an adult palette, but her baked goods and treats would make any kid smile. I can personally vouch for the Jalapeno-Lime Hummus http://glutenfreegoddess.blogspot.com/2006/03/jalapeno-lime-hummus.html and the Pecan Crackers, which Wynn refused to eat until I topped them with some peanut-butter and agave nectar and then he devoured them: http://glutenfreegoddess.blogspot.com/2008/09/pecan-crackers.html and the Chocolate Chip Brownies were easy and yummy, although I couldn't fool my daughter-she knew they were GF right away: http://glutenfreegoddess.blogspot.com/2005/12/peanut-butter-chocolate-chip-bars.html And will definitely be making the Sweet Potato Coffee Cake soon: http://glutenfreegoddess.blogspot.com/2008/12/sweet-potato-coffee-cake-and-love-story.html