Latest posts for the topic "Experiences with Schools: The Good and The Bad" recent IAN discussions

Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Share your experiences with the educational system, both the successes and the failures. What has your experience been with IEPs, inclusion, etc.? What has worked? And what research could be done to demonstrate that a certain way of doing things does (or does not) work for most children with ASD?

Re:Experiences with Schools: The Good and The Bad

Anilise — GMT

I have had nothing but bad luck when it comes to our school. My son has been in speech therapy since he was pre-school at our public school's early childhood education program for children w/ special needs. We do have an IEP in place. They are working w/ him for sound system disorder. Since my son has been in kindergarten I have been saying "there is something other than speech going on." Jackson often is behind in subjects, has trouble learning the other kids names, doesn't play w/ the others very much at all. Being that Autism runs in our family and I could see so much of my lil' brother in my son I kept pushing for other tests to be done. However, behavioral wise Jackson is the perfect student. Teachers would look at me in shock when I would explain his behavior at home. Even Jackson's speech teacher went as far as to say that his behavior at home was do to a lack of attention from me. Everyone would say...."Jackson makes eye contact, he is just behind and it is all because of his speech." It has been my experience that teachers have a cut and dry percepetion of what Autism is. They are not, however experts. There really isn't anything cut and dry and about. That is why there is a spectrum. We have obtained an official diagnoses of Asperger's this summer and I will be the first to tell ya...I can't wait to give a copy of the diagnoses letter to his speech teacher. ~A

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Anilise, I think you will find many parents can tell a similar story. The IAN data have shown that there is a much greater time lag between the time a parent is concerned and the time they get a diagnosis for children with Asperger's compared with children with other autism spectrum disorders. Because they are verbal, because they may make some eye contact, because they love to talk to (or at least "at") people, higher functioning individuals can be missed for a long time. I attended a seminar on girls with high functioning autism recently, and the presenter said this is even more true for girls who are often missed until Middle School or beyond. By the way, it is actually quite common for a child with Asperger's to be a "Jekyl and Hyde" -- perfectly behaved at school or home, and then terribly behaved in the other setting. See our write up about Asperger's and meltdowns, here: http://www.iancommunity.org/cs/about_asds/aspergers_syndrome_meltdowns

Re:Experiences with Schools: The Good and The Bad

Anilise — GMT

Connie, Thank you for the link and the support! :D ~Anilise

Experiences with Schools: The Good and The Bad

blessedmom — GMT

The GOOD: "They" seem to alway's want to listen. The BAD: "They" the school want to be the Judge, Jury, Doctor, Teacher, Therapist Etc. at some schools. ALL to say they are the experts when it comes to Autism. We have taught children with Autism before. Big Deal, you haven't taught my son with Autism. Test after test, meeting after meeting takes a toll on any parent. My son was changed from Severe Autism to High Functioning Autism! YEAH! but it was not a easy road for him or me. He put in the Work. I was my son's loudest advocate. It is what it takes to WIN. Be strong, support your child with all your heart and read everything to support your child, data reports, letters from Doctors, test scores, etc. I feel like a cheerleader with the chant: Fight, Fight, Fight! But your child is the Winner.

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

I just wanted to cheer you on, blessedmom. :) It is true - the fight is well worth it, as you look back and see that progress really can be made. :)

Re:Experiences with Schools: The Good and The Bad

funny mummy — GMT

i realy dont want my son in a mainstream school they dont help him they know nothing about it...they just want the money i realy need some advise on where to go to get help to change my sons school im realy fed up of them bullying me i just want what is best for my son they can get lossed ive had enough of them all judging me and treating my boy as a nobody its breaking my heart :cry:

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Hi funny mummy, and welcome to IAN. :) I'm sorry to hear your experience at the school has been so disappointing. :( There are a couple of things that really help parents as they try to figure out the best path, as far as school goes. One of these is to know the law: the Individuals with Disabilities Education Act (IDEA). If you can find any kind of seminar or workshop about that, it would be a good idea to learn about it. Local chapters of the Autism Society of America, school districts, state service departments of various kinds -- all of these put workshops about IDEA and Individualized Education Plans (IEPs) on. The U.S. Department of Education also has resource centers where they have "technical assistance" -- which is a silly name, but what it really means is they have information and sometimes training or classes about your child's rights under the law. See: http://www.taalliance.org/ptidirectory/pclist.asp For local chapters of the Autism Society of America, see: http://www.autism-society.org/site/PageServer?pagename=community_chapters Autism Speaks has a write-up about your child's rights under the law here: http://www.autismspeaks.org/howtocope/index.php?WT.svl=Top_Nav The other important thing is to find out from knowledgeable people in the local area what schools are available, and what people's experience has been: how hard was it to get their child in this school or that one? Was it worth it? Are they happy? How did they do it? Often, parents will seek out other parents of children with disabilities, especially parents of kids older than their own who have already been through this, to get some advice or ideas. The local chapter of the Autism Society of America, other autism support groups, or any organization involving parents of children with ANY disability may be helpful. I know some parents have tried to find out the schools they think might work for their child, and then requested from the school district a visit to each. It is good to remember, too, that sometimes the school district itself can be very helpful and may be able to offer you some good options, although that depends a lot on the school district. Keep in mind that it is your right to call an IEP meeting, where you can say that you feel the current situation is not working and you would like to discuss alternatives: what else is available? (But...it is also good to have some outside info, and be prepared to say: "I've heard about such-and-such school. What about that?") I hope you are able to get a better situation for your son soon.

Experiences with Schools: The Good and The Bad

lachelle — GMT

I am new to IAN and my son just turned 6yrs and newly diagnosed. At age 3 speech was presented to us being lack there of. He went to pre K for speech at age 4 and last june he was diagnosed ADHD. we learned he had a severe receptive and mild expressive delay with auditory & visual processing delay so with all this and his lack of progress in the general ed I started a mission. Which as a mom I had my "mom" vision on took him to developmental doc in this past Feb then got PDD/NOS gave that to the school and they wanted confirmed diagnosis of "AUTISM". My son struggled all year i fought for OT and my son in K fought me to go to school every morning.He then gave up by quit doing work even pasting. There were RED flags all year and my son by the end of the year could still only count to 10 (12 w/objects)couldnt identify letters but a hand full or put sounds with them, if ask certain way he could tell you the colors, likes sequence and remember according, moch other kids to see what they were supposed to be doing-due to lack of understanding in directions,kids calling him dumb, list goes on. Faught teacher, SPED, district,to get him out of mainstream class. All for them to tell me that is whats best for him. Hed test average or borderline,show potential and IQ spots where he would fool everyone. they look at him and think MOM is pushing a label on him. Then finally after meeting after meeting and having him retained faught for that too (due to IDEA & NO CHILD LEFT BEHIND ACT) They have this aspect of one child fits all and lets put him where WE the school need him not where he needs to be successful. IEP what a joke, we the parents are supposed to be on the team but they all want to act as they are listening but in the end they over trump and try to convince you you are wrong and with there degree's they know. Yeah theyd know if they cant talk,chair bound so on....judge a book by its cover aspect. I am so like these other moms on here. Same fight in the schools and with IEP's it is sooo mentally draining and on the children especially with ASD.Now I have the firm diagnosis and his symptoms have become more dominant or increased.It has been a night mare so far in the schools. And I have learned that we cant just sign our name in agreeance to what they say, we KNOW best if we take the time. I cant et enough research on autism he fascinates me with the mazes and way his mind works,then when he acts out and i dont know why or how to help I feel i dont have a voice no more.And to think i used to dred him coming home due to chaos and meltdowns, i cry...now i have to advocate his feelings for him as per another mom on here school thinks im nuts when i go into behaviors at home and they dont see it. I was also told if i would of kept him home another year i wouldnt be in this predicument. Im so sick of hearing hes a young "K" or hes just "5". I beleave in early intervention and if i would of ignored the red flags as they did and they are professionals he would of made it to 2nd grade and lost all that education by being sooo behind. I will not allow them to sweep him or anyone under the rug.

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Welcome to IAN, lachelle. :) I'm sorry to hear of your struggles. As you can see from this forum, they are unfortunately not uncommon. From what I hear from families, this is one of the most difficult tasks: getting a good diagnosis, and then finding or developing a program that works for your child...which generally requires learning a great deal very quickly about the federal law about educating children with disabilities. (see previous post) Perhaps most frustrating of all is to have your concerns dismissed. I was recently at the Autism Society of America national conference, and the President-Elect of the American Academy of Pediatrics was speaking there. She said they are trying to get the word out to pediatricians, at least, that they should STOP saying, "Oh, don't worry, some children just develop a little more slowly" or whatever they have typically said when a parent is really worried about development but they don't, on the surface, perceive a problem. They should stop to listen, and go on to assess, when a parent is worried, and decide if a more detailed evaluation is required, perhaps by a developmental pediatrician or other specialist. From what parents say, it appears some schools may also dismiss parental concerns too easily. Of course, the more a child with ASD has some strengths, such as a great memory or verbal ability, the harder it can be for non-experts to see the ASD behind the gifts. I hope you are able to find a placement that works well for your son, soon.

Experiences with Schools: The Good and The Bad

lachelle — GMT

thanks Connie, & other ASD parents. From what I am reading with the controversy reguarding the schools and keeping up on their end...I would think that they would know by now that even a high functioning norm kid could have autism and it effects all different. You woud think with the IEP's in place it would be more beneficial to them, but it is all getting them to realize and be on same page as you to recieve that "perfect IEP". Its nice to know there are others as well w/ same outcomes and situations no matter the function or Aspbergers. At same time saddening due to if we all have samiliar cases & outcomes there isnt enough awarness and experiance in the school system/district. My controversy with in myself is mainstream vs self contained-autism class. He cant learn in mainstream but functions then in the autism class they are afraid of picking up behaviors. Me NO matter where you are kids pick up behaviors. would like to hear some stories from other parents exp on both and preference. You have a child with transitioning problems and adaptability yet they want him in two different environments and flip flop him around. Hmmmmmmm so by all means please give some feed back or email me your exp and ideas.lachellenlow@gmail.com thanks

Re:Experiences with Schools: The Good and The Bad

nhmom — GMT

The VERY good; My son's autsim (PDD-NOS specifically) was brought to light at about 3 1/2 years of age by his (private, NH does not fund preschool) preschool teacher. She had every right to toss him out of her school. Instead, she faced every behavior and meltdown he threw at her and taught him how to behave in a typical class setting. He was one of the lucky few to win dual placement for preschool and kindergarten. I can not say enough about early intervention, and an exceptional preschool teacher up for a challenge. The good; My son's school has been very proactive always in keeping up with the latest in autism research, and applying what they learn to the curriculum. They are accommodating, and want him to succeed, and he has done well, as he enters the second grade. The Bad. Summer school was held at the middle school, with a change of curriculum, and grades 2 and 3 totaled 22 kids in a summer school class. Add the fact that with all the snow days there was a week between the end of the school year, and summer school didn't help. I also help out the summer school program for about a week every summer, and my son did not want to be there without me. His disruptive, obstinate, and aggressive behaviors were coming out at home too. I removed him from summer school, and continued his alt. therapies (listening and horseback riding). His behavior is challenging, and his test scores reflect it. I know he will never get a 1:1, and finding creative and cost effective alternatives to that issue are challenging. I try to stay as involved as I can as a parent, with monthly meetings, and helping out in the school as much as my husband and I can. Overall, I do have to say I think there is a lot more good than bad. Its a lot of work, educating myself, and asking a lot of questions. I am eternally grateful for this web site. Thank you!!

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Hi nhmom. Welcome to IAN! :) I'm so glad to hear of your son's success, and of the support of his pre-school teacher. I hear all too often of children with ASD who are asked to leave private pre-schools, so the fact this was a private pre-school is especially impressive. I think many parents find the summer a challenge. You fight like crazy to get your child's program just right, to get everyone on the team informed and on the same page...and then summer's here. There may be a different school location, new staff, and a feeling of having to start all over again. Sometimes "extended school year" works out well, but not always. At the very least, it's a transition to a new routine, and those can be difficult for children with ASD, and so for their parents, too. Of course, "back-to-school" can present some of the same difficulties, but at least you may be back to the same principal, guidance counselor, IEP chair, etc. Best wishes to you and your son for this new school year!

Re:Experiences with Schools: The Good and The Bad

mana-kin — GMT

My son, Lucas does well in school and in most enviroments.He knows how to behave,he works dilligently at school,he is so high-functioning,that he could easily be mistaken as a child who is ADD with an oppositional defiant disorder.Lucas does the very best he can.When he comes home to his known enviorment,with me,his mom whom he trust and loves,he no longer has to pay such close attention to every single detail,practicing his words.Lucas no longer has the pressure to appear "normal"......he is normal,it is the outside world that closes him out.My son is not in his own little world...he engages the other children,who sometimes run away from him while he is talking,he desperatly tries to keep up with the gym class...so loud and noisy,too many rules with each new ball and game.My point? Lucas is all lucas when he comes home to me...autism and all.Some days he explodes(subititute teacher),some days he whines and crys,each day brings a new reaction autism or not everyone has good and bad days.Autism is every day,every single day,it does not go away.What can go away is the mystery of why?Answer with HOW? How can I teach others that people in the spectrum do not need therapy as much as modifications?Modify the sound,the words,the autistics enviroment into a place where the autistic mind can function as extrodinary as intended.My son's intelligence is smothered by his autism;changes,people,voucabulary mistakes speech is so random and fast,jumbled when excited or upset,what happens is his frustration with knowing but not producing the thought intentended causes any number of reactions.Sorry did not mean to ramble,I am so sick of the looks and the assumtions Lucas is caterted to because I want to modify his world just a little,little exceptions not excuses,I find it sad,my little boy can pretend,fool people most of the time.I am sick of comments regarding what Lucas knows.He knows alot he doesn't have amnesia he has autism.

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Welcome to IAN, mana-kin. :) I so understand your frustration, as I think many parents of children on the spectrum will. Children with ASD who are verbal, and especially children who are gifted intellectually, often meet a dismissal of their real deficits and needs. I think parents of children who fit this description find themselves fighting especially hard to educate people in the community who can't "see" the autism. One thing I have seen parents do is write up a brief description of their child's strengths and weaknesses which they can share with teachers or whoever. It might have a title like "Lucas' Gifts and Challenges" and state that "despite his many gifts, Lucas does have some real challenges and will need your help." Then list the gifts or strengths (briefly), followed by the challenges. Of course, you want to go into much more detail and highlight the challenges. You can use that document at an IEP meeting or even just in a discussion with the teacher. "See here, that my son has a hard time with too much noise and clutter? He needs a pass to leave the classroom and go to guidance when he's feeling overwhelmed." -- or whatever you might advocate for. It's always an uphill battle, but it may help to have, down in writing, a quick description of challenges that you can tie to requests for modifications or support. When I used to create this kind of thing for my own son, I would also include a list of things I knew would help if my son was getting upset, like "some quiet time to play with manipulatives or legos." The document became a "quick reference" or "cheat sheet" for teachers, camp counselors, cubscout leaders, etc. I hope everyone will remember, as far as educating people in the community, that there is a lot of useful information on IAN Community you can provide as a link in an email or print out and hand people. Especially helpful when trying to educate those who don't know that much about ASD: The sections on autism or Asperger's syndrome in "About ASDs": http://www.iancommunity.org/cs/about_asds/ Any relevant section in "Challenging Behaviors": http://www.iancommunity.org/cs/challenging_behavior/

Re:Experiences with Schools: The Good and The Bad

Domisdad — GMT

Hi everyone, Thanks all for sharing your experiences, it's been a very helpful read as our ASD diagnosed child is only 4 years old so we're still new to this. Next year my son is getting 2 hours of specialized, individual aid at preschool each week to keep up with his peers in his last year at preschool. I'm not sure this will be enough. With one year to go before kindergarten, I'm worried that he won't be able to pass the required test, meaning he would stay in preschool for one more year. I'm afraid of the impact of him having to integrate in a new group of children. I really fear it could cause serious regression. We have been through an episode where he was very inward and hard to reach and I really want to everything possible to avoid going back to that. OK He's not exactly popular in the group he's in now (haven't seen any b-day invites...) and his peers already notice he's different (e.g. talks about pirates a lot of the time), but at least he seems accepted. When it comes to learning, although on the one hand he fluently speaks his two mother tongue languages, is very responsive (doesn't "zone out" much in his own world), talks the whole time (mostly 1-way though) and really never has any breakdowns or tantrums, it's a very frustrating experience to teach him how to do new things. Yet on verbal intelligence tests, he scores above average. A lot of it is lack of concentration, in many cases likely caused by an overload of sensory input. It's painful to see my 2-year old daughter count to ten, and see my 4-year old son struggling at it. Or not being able to teach him how to take his water gun and hold it in the sea to suck up the water as he's just too excited and can't concentrate. I wonder if any parents out there with an ASD child have had any luck with Ritalin, to help concentrating? The doctors we're seeing are willing to give it a try. Thanks for any insights D's dad

Re:Experiences with Schools: The Good and The Bad

SaraB — GMT

Hi Domisdad. I was just going to say, as far as Ritalin, that we had a rather negative experience with it. Our son with Asperger's had a terrible time focusing in elementary school, and so we tried a bunch of what are basically ADHD meds: ritalin, strattera, dexedrine. None of them did much, and the ritalin made him get out-of-control obsessive, like making me re-read the same paragraph of a story again and again until I used the exact intonation he wanted. Eek. Of course, each child is really different, so this might not be your experience at all. He ended up later on the "atypical antipsychotics" (Abiify, and then Risperdal) which really, really helped him with meltdowns and attention, too.

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Just a reminder to everyone about meds: responses to each type of medication are very individual. There is a trial and error process that, while not much fun, is how you and your psychiatrist figure out what works. It's important to keep this in mind. What is a miracle drug for one child may not work at all, or even have negative effects, in another. It's hard to be patient as you figure out what works for your own child, but hopefully it will help to understand that trying, observing, evaluating...and then trying something else, if necessary, is part of the process. For a report on medications being used to treat ASD and related conditions by families participating in the IAN Research project, see our IAN Research Report, here: http://www.iancommunity.org/cs/ian_research_reports/treatment_series_medication

Re:Experiences with Schools: The Good and The Bad

Bonnisue — GMT

My Trenton is very high functioning, diagnosed Aspbergers. His pre-school was extremely helpful in developing skills he lacked. It was a mixture of children who were not afflicted with any type of disability, to children with autism, mental disorders and handicaps. Therapists came to the school daily or several times weekly to fulfill the IEP needs of each student. He made wonderful progress but was held back from starting kindergarten due to his immaturity. (I still remember stories his therapists would share with me). Starting a public school was a major adjustment for Trenton but we got through kindergarten, 1st, 2nd, 3rd & 4th grade. Over the summer the school district decided 5th grade students would start changing classrooms and have a locker, rather than wait until the 6th grade. I had no way to prepare Trenton not knowing of it until the 1st day of school myself. I received notes everyday from one teacher or another regarding one problem or another. During his IEP meeting, end of the prior school year, it was decided by the administration and teachers Trenton did not need an assistant. I let them know I had a problem with it but was overruled. I attended the 1st parent-teacher conference only to find out one of the schools new teachers didn't even know Trenton had an IEP. OUTRAGED, the superintendent assured me a meeting would be called by all Trenton's teachers to make sure all were on the same page. I had been receiving monthly reports noting all IEP requirements were being fulfilled. From the beginning of that school year I saw a very happy and excited boy go to very sad and unhappy. Every night it was hours and hours of homework, right up to bed time. When I would pick him up after school, his head would be hanging, a sad look on his face and his back pack was full. He served many detentions due to being late for classes. His locker was right in the middle of two classrooms doors with two much bigger boys than him on each side. Intimidated, Trenton would wait until the classroom was empty, stand in the doorway waiting for the hallway to clear out, and then go to his locker. By the time he got to his next class the 2nd bell had rung and he was late. Further discussions with the administrator fell on deaf ears. By spring Trenton had been overwhelmed with more than he could handle. He wrote a letter to the principal of how he thought it was wrong that kids were pushy, disrespectful, and rude, and he felt he was being bullied, which the school states they have ZERO tolerance of such behavior. One day he went to his math class with the wrong homework assignment. I thought I had everything covered by color coordinating each class with a book cover and matching color folder, of which he chose the color representing each class. Somehow the homework assignment got in the wrong color folder and he didn't have it. He asked permission to go to his locker to get it but the teacher denied the request and told him he was probably lying and he was going to get an "f" for the day. Trenton started to walk out of the classroom to prove to her he was not lying and he wasn't about to get an "f". She ordered him back to his seat in the back of the room. (It was stated in his IEP he was to have a front seat in every class because he is so easily distracted. I wasn't aware of this because according to my monthly IEP reports he had front row seats in every class.) He was so over come with anger he stopped, got right up into the teachers face and stated he was not a liar. She ordered him to sit down and told her no, not until she apologized for calling him a liar. This was the 1st time Trenton had ever lashed out to anyone verbally and all were left in shock by his outburst. The teacher left the classroom to confront the principal of this. In those few moments Trenton took his lunch card, which hung around his neck on a long string and tried to hang himself. He stood on her chair, put the string on a hook that was at the top of the black board and kicked the chair out from underneath him. Not realizing this really wasn't going to work because his head slipped out right away and fell to the floor. That is what the teacher saw when she walked back into the room. I was called to the school and found Trenton in the principal?s office who had been talking to Trenton before I got there. I found him calm but confused and when I asked Trenton why he tried to hang himself he said he couldn't deal with the kids and teachers anymore and just wanted to end it. I was advised to take Trenton home, take the rest of the week off and do what I had to do to get him through this and he'd be welcome back on Monday. We talked a lot and about many of things. Trenton told me about a dream he had of a perfect school and when he was able, he was going to invent this school. I called my Pastor who came and had a wonderful talk with Trenton and made him promise he would not do this again. Pastor continued to be an advocate for Trenton. I made a promise to Trenton if he could just hang in there for 2 1/2 more months, until the end of the school year, it would be the last time he would have to go to public school. Summer vacation started and Trenton went to visit his dad in Texas for several weeks. It took me all summer filling out aps and going through interviews with private schools only to be turned down because of his incident which they regarded as a behavior problem. Finally, I found a small Christian school that agreed to test Trenton to see if he qualified academically for their school. They said he had the 2nd highest score in the history of the school and welcomed him with opened arms. Trenton was thrilled because this was just like the school in his dream. A small classroom for up to 20 students, the same 2 to 3 teachers in the room at all times the whole day, no hallways, no changing class, no lockers, and he gets to sit in a booth where he is not disturbed by the other students. Church based, the students are more like family. The school rules are strict and enforced, and apply to every student. Trenton doesn?t have huge heavy books anymore. It?s based more on home schooling material where each child works at their own pace in every subject. With guidance from the teachers they set their own goals. This is the 3rd year he has attended and when I pick Trenton up from school now, I no longer see the sad, unhappy boy, he reminds me of the scarecrow on the ?Wizard of Oz?. Everyday he comes out the door running and jumping at the same time, with arms waving away in the air and the biggest smile on his face. Trenton was the 1st autistic student the school ever enrolled and they are more than willing to work closely with me, learning everything they can about him and how to teach him, as well as be on top of any changes in him and deal with any discipline problems in an appropriate manner. (They use paddling and I don?t agree with it). We both have been so blessed to have a school like this in our area. Since Trenton, the school has now admitted other autistic children as long as they do not have severe behavior problems because they don?t have the ways and means to be able to handle them. He has won so many awards, trophies and medallions for his accomplishments I have run out of room to put them. He is admired and respected by his classmates and teachers. They all like me could not be prouder of him. I can only pray for parents who are struggling with school systems. I know their frustration and pain but can you imagine what our children who can?t communicate that to us what they must have locked up on the inside. I can?t even begin to imagine. I pray all parents and children are blessed the way Trenton and I have been.

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Welcome to IAN, Bonnisue, and thank you for sharing your story with us. :) I am so sorry to hear what a struggle you and your son have gone through. It is amazing what impact changing a child with ASD's environment can have. Smaller classes, less chaos, a staff that is well briefed -- can make such a huge difference. Likewise, it is unsettling to see how badly a child can struggle, to the point of contemplating suicide, when the school environment is overwhelming and unsupportive. I am so glad that you were able to find a situation that worked so well for Trenton.

Re:Experiences with Schools: The Good and The Bad

RhondaMR — GMT

My 11 yo has not been formally diagnosed yet although he has been on an IEP since kindergarden as "a student with a Behavior Disorder due to difficulties with social interactions, coping skills, aggression, work completion and oppositional behaviors" and I have to say that my experience with the public schools has been very frustrating. I truly believe that they have done everything with the very best of intentions and I think that the problems really are with the fact that my son is not what they are equipped to deal with. He has had problems since preschool - to the point that I quit working thinking that I needed to do more with/for him. By kindergarden I had him tested and entered into speech services at the school thinking that this was the cause of his problems because he has very bad dental problems that caused him to either not speak at all or cover his mouth so people didn't see his teeth when he spoke. He had no self esteem because the other children tormented him. In hindsight, I think that this all masked the real root of his problems. At the same time it started very early intervention by what I call "the system". He began running away from the classroom and lashing out at other students. The smallest slight would send him reeling and school parties/large gatherings put him in a frenzy. Anything and everything said to him was taken quite literally. Examples - he came home crying hysterically one day saying that my husband and I were trying to kill him. He was quite convinced and it took MUCH investigating to figure out that they had a DARE class at school that day and he was told that second hand smoke killed you. Since we smoke, he decided that meant we were doing it to kill him. Imagine his responses when a child his age would say anything - even in play. How my son would interpret it and respond was open to chance. He developed "mystery" ailments and saw the school nurse on an almost weekly basis. Between this and his frequent runs to the resource room to cool himself down (not to mention the visits with the counselor/psychologist) I began to wonder if he had any time to do his schoolwork at all. Because he was unable to successfully interact socially and would have the occasional outbursts he was put in after school programs, seeing the school counselor and psychologist as well as his resource teacher, taken to our family doctor and so many therapists I lost count. Everyone had a different idea of what the problem was and how to deal with it. The diagnosis varied from Aspergers, ADHD, ODD, OCD - to anxiety, depression, and so on. Along with each new diagnosis came new suggestions on behavior modifications. The problem was that my son was SOMETIMES able to behave completely normally and almost always if he was in a one-on-one or small group environment. At home we had no violent outbursts at all which really frustrated my husband and I. We began to think he was just being defiant (one of the therapists had insinuated that he was spoiled and that we just didn't discipline him enough). He would go for weeks with no problems whatsoever and then BOOM - he would strike a kid at school and we would start the ball rolling all over again. It wasn't until recently that I was reading a book on Aspergers and realized that was the problem! We had went through more than 5 years of public school (I had taken him out to homeschool him for a year in 4th grade and had no problems but was worried that I was just avoiding the real problem and not helping it so put him back). His triggers seem to be too much stimulation and environment change which is why we don't see it at home. I keep it pretty routine and organized even though one therapist said I was micromanaging his life and and not allowing him to learn how to be responsible for himself. If I don't though we run the risk of meltdown and failure to complete what he needs to such as chores and schoolwork. I am wondering if public school is actually a good answer for him. If I should force him to learn to interact in that environment when I am not so sure he will ever be forced as an adult to deal with a crowded, bustling school-like atmosphere again if he doesn't choose to (which he won't). On the same note I am not sure he CAN or ever will learn how to do this. After years of therapists, classes, behavior mods, etc, we still see exactly the same behaviors and I am wondering if anything we have tried has been anything but temporary solutions to a permanent problem. I also don't know that it is fair to expect the school to know how or have the resources to educate him. Sorry for the rambling but the school year has just started and I sit on pins and needles every day waiting for a phone call. We can go weeks with no problems whatsoever but who knows when someone will make that random comment or something unexpected will happen.

Re:Experiences with Schools: The Good and The Bad

Suetois — GMT

My son's school just accidentally did a very good thing that other parents might want to suggest to their children's teachers. My son is in a technical program in high school. The class assignment was to prepare a PowerPoint presentation about themselves. My son's was well done. He had the class laughing with him rather than at him, and he talked about the fact that he has Asperger's Syndrome which makes it very hard for him to reach out to other people. He said he still wants to know them though, so he asked them to approach him. I don't know if it will work, but it's the first time in his life that he's reached out to other people which is huge. I'm so proud of him. It also gave his classmates some information about him that I'm sure is helpful. I was thinking that if other teachers gave similar assignments to their classes, it might give other kids with AS a way to explain their interests and to reach out too. A lot of schools introduce technology, like PowerPoint presentations, in elementary school these days, so it could be worked into the regular curriculum in a way that benefits all the kids.

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Hi Suetois - and thank you for sharing this wonderful idea. I will be very interested to hear how things turn out. And welcome to RhondaMR. :) I am so sorry to hear of your son's struggles. As you can see from this forum, you and your family are not alone in this experience. :( Some of the steps other families in similar situations have talked about in this forum, as well as in e-mails to us, or even in comments as they filled in their IAN Research questionnaires, include: -- Taking steps to get a formal diagnosis, especially if you have come to be pretty certain that a specific diagnosis fits. Sometimes it's hard to find someone who is expert at diagnosing very high functioning, older children on the autism spectrum, but it is just such a person that you would need. Who could you ask? The key is to draw on local knowledge, whether it's a local mental health professional, someone working in special ed or the guidance office at school, or people involved in autism advocacy organizations (like your local Autism Society of America chapter) -- any of these may have ideas about who is expert at evaluating older children with autism spectrum disorders in the area. -- Remember that you can always call an IEP and advocate for a program, or a school, that will better meet your child's needs. (This may be easier to do once you have an evaluation from a qualified professional.) It is tough when the school district has little choice to offer, or when access to a specific "dream" school would take a legal battle, but even so... The first step is to see what they DO have to offer. I know when my son with Asperger's was young and in crisis, I had no idea that the program he ended up in (and which helped him enormously) existed until I started asking for alternatives. I hope our readers will leave some other suggestions for you, and I hope the situation improves soon!

Re:Experiences with Schools: The Good and The Bad

Suetois — GMT

Yesterday I was here to post about something good the school did for my teenager with AS. Today I'm back with something parents should watch out for. He got yet another one of those assignments where he's supposed to imagine that he's something that he's not. This is extremely difficult for him and many other people with AS. This time he was supposed to prepare a resume for a job that he currently has the skills to perform. In all honesty, he *doesn't* have the skills to work fast food or bag groceries like other kids his age. Once his teacher realized why he was having trouble, she just suggested that he *imagine* that he does have the skills. He can't do that either. He couldn't do the assignment and, after three days of trying, wound up in tears in class. That stressed him out even more. I hate having to educate every new set of teachers about common AS problems--and then having about half of them blow me off and insist that the kid has to do whatever the other kids do anyway. Of course the official answer is to call yet another IEP meeting, but you can't do that for every little thing. I just wish his caseworker would visit his teachers and give them a basic heads up as to what AS is like. It would make all of this so much easier. Instead, I'm emailing the teacher to explain the situation. Hopefully that will take care of this little glitch.

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Hi Suetois, and so sorry to hear of this. It truly is exhausting, educating a whole new wave of people every year...and even having to re-educate some who didn't get it the first time. It seems to happen all too often that an IEP chair or resource teacher may know and understand a child's situation, but half the other teachers assigned to him or her are barely informed of it.

Re:Experiences with Schools: The Good and The Bad

Montie — GMT

Hi, I'm very new to IAN, so bear with me if I ramble! *smiles* My son is 10 years old and in the 5th grade and was recently (in the last month) diagnosed with Asberger Syndrome. In the evaluation for Head Start, I asked the EC (exceptional child) expert if he had Autism (even high functioning),because it seemed as though he had no conscience, there was no consequence for his actions. She stated no, that he was far too social to be autistic. It didn't matter that he seemed not to comprehend you when you told him what would happen if he got into the candy, or got up out of his seat during instruction time. In retrospect, it seemed like he just could care less about what directives were given to him, and by all appearances, it looked like I just hadn't taught him right from wrong, when in fact, I had and was still doing so. The struggles with the school really started in kindergarten, when the teacher expected Tyler to conform to her class rules and demands, although he had an active IEP (for a diagnosis of ADHD at age 4 and various delays identified at age 2) and was not yet medicated for the ADHD. The teachers sent nasty notes home every day about behaviors such as inability to focus, not sitting still in class, not being quiet or laying down during nap time. I spoke numerous times with the teacher asking her if she would allow him to redirect with a book (the only thing I knew that could draw his attention away from bouncing all over the room, that didn't involve video games) and her response to me was "oh no, we can't do that, then all of my other students would want a book." Which way do you want it lady, do you want him quiet and focused on something or do you want him scattered all over the room? Her answer was "get this child on some medication." Sure. Okay, find a doctor that will put a 5 year old child on ADHD meds. Good luck with that! That process alone took 6 months and a child psychiatrist to see him (which in NC can take awhile). The Ritalin did help some, but didn't help with his inability to comprehend directives or consequences. As time went on, Tyler excelled in some things, and not so much in others. He has had some exceptional teachers, and some not so much so, but the Exceptional Children's program (special education) has been the one that has messed with my son the most. When the first IEP was introduced, it was explained to me that as he mastered certain goals, other goals would be introduced and the IEP would be reviewed annually to make sure the IEP was meeting his specific needs. This went on until 3rd grade, where Tyler's education and my emotions went on a roller coaster which we are STILL on. It was time for his re-evaluation (they do psychological evaluations every 3 years for children identified with EC needs)at which his psychologist did an academic achievement test and decided that my son no longer qualified for EC, or for an IEP. He was taken from that and placed under a 504 plan, which gave him certain modifications but not the special education support. He struggled with this and failed his End of Grade testing the first time (by 2 points) and passed it the second time (by 2 points). Moving on to fourth grade, he had an exceptional teacher, who really wanted Tyler to excel. And in a number of things he did. He made tremendous growth throughout a tremendously tough year for him. Add to this he also had 2 surgical procedures which added to the struggle. (Tonsils, Adenoids and Tubes and a Lithotripsy) The teacher, seeing Tyler progressing through the physical struggles, decided Tyler was just "playing mom" and asked for a review of his 504 status. In this review, basically I was steamrolled and told that whatever problems I was having with him at home had nothing to do with his academic success, and that they couldn't keep him in 504 if he was proving he could keep up on grade level. My question was, how can they expect me to reinforce homework for him? Their result was to take his 504 modifications from him and mainstream him completely. I was livid, and let it be known that I was in the meeting. Especially when their reasoning for pulling him was that his being on Ritalin helped him keep on grade level, and therefore he didn't qualify for the accommodations. It came time for the End of Grade testing again and guess what happened? He failed. Twice. I appealed the retention committee. Something in me told me that keeping him back for a year would not help the situation and it would only serve to make him feel like he failed and I refused to do it. I'm going to get the results of the Asberger testing on Thursday and setting up another meeting with EC to discuss the new findings. I think that if they can give him at the very LEAST accommodations he would at least have a fighting chance, and he fights so hard to keep up it infuriates me that the school would dare hinder that. Truth be told, my understanding of Asberger's is limited at best. I want to know if anyone knows anything about sensory therapy in schools through occupational therapy or is it only privately sought. I intend on pursuing this through the school system though, as I THINK this is supposed to be in the scope of practice for an occupational therapist, and if it's in their practice, why aren't they doing it for kids that need it IN SCHOOLS?? Again, I apologize for my ramblings. Blessings, Montie

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Hi Montie, and welcome to IAN. :) I'm so sorry to hear about what tremendous struggles you and your son have been through. It is so common for children with Asperger's not to be diagnosed for a long, long time...and have to struggle with no appropriate support for far too long. You can see this illustrated in our "state stats" -- scroll down to see the lag time between parent's concern and a diagnosis for children with autism, PDD-NOS, and Asperger's: http://dashboard.ianexchange.org/quickstats.aspx?A1=MD It is clear from data submitted by families all over the U.S. that parents with a child with Asperger's wait nearly 5 years from the time of their first worry until they are able to get a diagnosis. Getting a thorough evaluation by someone who is familiar with high functioning autism and Asperger's in an older child is one way to get back on track (and it sounds like you are heading in that direction). If your son does receive a formal autism spectrum diagnosis, he would then fall under the protections of the Individuals with Disabilities Education Act (IDEA) and would have the right to an IEP. As you prepare for discussions with the school, or to meet with the person evaluating your son, you might be interested in our materials on Asperger's syndrome: http://www.iancommunity.org/cs/about_asds/aspergers_syndrome (Sometimes people use these articles to educate personnel at the school, as well.) Another article that might be of interest is our Back-to-School Report 2009; it contains some good resources about IEPs, etc.: http://www.iancommunity.org/cs/ian_research_reports/back_to_school_2009 I hope you are able to get an excellent evaluation of your soon very soon, and that it leads to a better situation for him at school.

Re:Experiences with Schools: The Good and The Bad

MB1977 — GMT

Hello all! Im new to these boards. My 7 yr old son was diagnosed by a school psychiatrist with ADDHD and PDD while we were living in Pennsylvania. We are in the process of moving to Maryland due to family medical issues. Ive hear an awful lot about the Kennedy Krieger. While in Pa my son has seen a different psychiatrist who also diagnosed my son with ADDHD and PDD. He put my son on abilify, clonidone, focalin, a generic brand of focalin, and busiprone. However the buspirone is used for anxiety per his school request. He was first diagnosed by the State of PA just prior to starting Head Start and he received Physical, Occupational, Special Occupational and Speech therapies from when he was 1 yr to 3yr and at age 4, when he was in kindergarten, his "special ed" teacher with only 5 total kids all with special needs, had my son transported to a special school about an hr away from where we were living (in Pa) due to behavioral issues my son displayed at school. According to the teacher, my son would sometimes hit, kick, throw tampertantrums and each time he did homework, even with me doing hand over hand with him as I was shown how to do, it did not satisfy the teacher. So in his new school, he did a lot better in the new school. But he did have his own pyschiatrist who gave him two different meds but that proved fruitless because, on average, at least 2x a week, my son would have to be restrained due to behavioral issues. At same time, his speech was slowly coming along. For the last 2 yrs he attended a school about 5 minutes away from home his speech remarkably improved but still isnt where it should be. His behavorial issues have to an extent calm down. He wakes up and is extremely hyper and very wild. The meds he takes takes about 30 min to calm down but at night his meds take an hr to take effect and I am wondering if it is due to his body having it in the system for so long--since Feb of 09. Sometimes at school he gets out of seat talks out of turn talks when he isnt suppose to. He also has had issues of being clingy too. Im just wondering how long does it take to get an appointment at Kennedy Krieger because I would like to have my son tested before I get him enrolled into the MD School System and Im also wondering how long before the school would do its own testing?

Re:Experiences with Schools: The Good and The Bad

Suetois — GMT

MB1977. I have friends who take their son to Kennedy Krieger. They're really good. But it does take a *long* time to get in. Then again, it seems like that's the case with all the people who specialize in our kids. I think it's a really good idea for you to take your son there, though. With his mental health background on his mother's side, it wouldn't be surprising if there were several things in play. For example, my children have Asperger's and ADHD and also are bipolar. The meds that make the ADHD better, make the bipolar-related behavior problems a lot worse. You really need an experienced professional to evaluate your son and help you decide how best to help him. The other problem is going to be affording it. Our insurance balked at authorizing a neuro-developmental evaluation. They said it wasn't authorized because it was experimental. Horse hockey! What it was (and is) is expensive. Be prepared for a possible fight. Good luck. For what it's worth, I hear good things about the special ed. services in Montgomery County in MD relative to some of the other school districts around here.

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Hi MB1977, and welcome to IAN. :) To add to the information Suetois provided, I made a call to the Kennedy Krieger referral line. They were very helpful. It is true that there can be a wait for an appointment, but the process is not hard. First, you call the Kennedy Krieger referral line: 888 554-2080. At present, they offer a menu of choices, but you would press "1" if you are interested in an appointment. The person who answers the phone would then do a fairly extensive telephone intake process with you, asking you questions about your child's development and challenges. They provide this information to a treatment team that decides what types of professionals your child might need to see for an evaluation. Within 2-3 weeks or so you would usually get a call from someone associated with that team who would speak with you about an appointment and put you on the waiting list. At that time, they will let you know about how long the wait will be. (The wait time varies a great deal depending on a child's age and individual circumstances, so it's hard to estimate one here.) Shortly before the actual face-to-face appointment, you would get a call regarding your insurance coverage. Various plans, including some of the HMOs or plans under Medicaid, are accepted. It might be a good idea to ask about the insurance during the intake phone call, just so you'd know if what you have is accepted... You might even have time to switch to different insurance if it's not, since there may be a waiting time. You do not need any specific insurance to go through the intake process or get on the waiting list. As I said, they will call and make sure the insurance is all in order shortly before the actual appointment date. I hope this proves helpful, and that you are able to get your son evaluated, whether at Kennedy Krieger or by another knowlegeable professional or center, soon.

Experiences with Schools: The Good and The Bad

MB1977 — GMT

thank you all for the replies. i sure do appreciate it. i am going to make appointment and get my son the best help i can. i also appreciate the links in the other post. thank you for that.

Re:Experiences with Schools: The Good and The Bad

asdteach88 — GMT

Hello to all on this forum. I am a teacher in an Autism Program (high-functioning and AS) at the elementary level. I am greatly disheartened by many of the stories I've read here. My experiences in working with families have been mostly great. We work hard together to ensure that my students are able to make good progress- socially, emotionally, and academically. I love my job, the kids, and the families. After reading what so many have done wrong, I am posting to ask for parent input on what schools can do to be supportive. I am just looking for some guidelines to share. Thanks for your time.

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Hi asdteach88, and welcome to IAN. :) I know many parents have had incredible encounters with gifted teachers and therapists who made a difference to their child with ASD and their family. Still, there are some schools (or entire districts) far less knowledgeable and less able to provide appropriate support than others. I hope our families will share their feedback with you, and that it will be helpful.

Re:Experiences with Schools: The Good and The Bad

EIinNC — GMT

I am also a teacher in an Autism classroom in NC. I used to provide Early Intervention and I am so excited to be back in the school, but it is a fight. For not just the families but the teachers also. What is researched and found as the most appropriate therapies for children with ASD, including PDD etc. are not actually placed on the IEP as ways to teach. I think that may be a way to get the system more involved by specifying what way the family wants the treatment provided. It is going to take experience in knowing whether their child needs more manding in interactions, modeling, imitation, a pivital response, ABA, or working on joint attention. Although all of these are things that are most likely needed for children with ASD, each child has a "profile" It would be nice if parents and schools and teachers were able to come up with a "profile as in a sensory profile, educational profile etc and then make a plan on the best way they learn.....and stick with it. It would save time for teachers in trying all different types of strats, but I also know many families are not educated in a lot of these therapies, schools have paperwork to be filled and accountability that unfortunately, I still have to teach to an end of grade test that our children take no matter what their disability is at the end of particular grades. It is frustrating for everyone but if we work together we can make change....it will be slow...but each little change can make bigger changes in shorter times. I am looking forward to this school year. ALthough I haven't been in the classroom in awhile, and my classroom isn't "pretty" or frilly and all, the little guys I have are beautiful and each and everyday I learn something new. Those moments where you see the light bulb go off, the wheels turn, the smile and eye contact that is so deep and connected make those days that are are tough so worth every minute. And I know that the families understand. I am just so lucky to be able to share their child with them. Thanks for letting me share.

Re:Experiences with Schools: The Good and The Bad

Fred A. Lonniam — GMT

funny mummy wrote:

i realy dont want my son in a mainstream school they dont help him they know nothing about it...they just want the money i realy need some advise on where to go to get help to change my sons school im realy fed up of them bullying me i just want what is best for my son they can get lossed ive had enough of them all judging me and treating my boy as a nobody its breaking my heart :cry:

I hear some of the same word from my student: bully, they, them, judging, I'm a nobody. You have to be the advocate for your son. The school is obligated to provide meaningful education. Make sure you insist on district level intervention, don't rely on your school alone.

Re:Experiences with Schools: The Good and The Bad

Faith71960 — GMT

Unfortunately most schools don't know how to help our children or have the funding to provide all they need, but I've been fortunate that at least the school wants and tries to help my son as much as they can. My one big complaint though is with the rules of the IEPs. There is a rule that allows the parent to bring someone to the meeting that is knowledgeable about that child. What non-divorced parents don't realize is that the rule is allowing divorced parents to bring their girlfriend/boyfriend or new spouse to the meeting without getting permission from the other parent. What the rule also doesn't say is that the people running the IEP also have to let this person talk all they want and make demands about your own child and I've been told there's nothing we can do about it. I have written our states Governor and head of ESE in hopes they would change that rule to include getting permission from each parent if a girlfriend/boyfriend or new spouse is to come to the meeting, but so far nothing has come of that. They also let this person sign the IEPs on the parent line as well. It's bad enough that we parents have to fight for our children to get the help they need at school, it's even worse having a nonparent have rights over decisions that effect your child and be allowed to participate in a meeting that should be between the actual parents, the child, and the school.

Re:Experiences with Schools: The Good and The Bad

unourjeluz — GMT

My son was bullied by children in school to the point we had to withdraw him . He was called gay ,retarded etc. When I contacted the school they tried to tell me he was misinterpreting the slang the kids were using and taking it very literal. The kids really didnt mean it. My son came home crying every night.I also had a school principal tell me she didnt think my son had AS,that he was just a loner,until I told her that Childrens Hosp. had diagnosed him. I also had teachers tell me there was nothing wrong with him except he was lazy!I have struggled with the schools. He did decide to go back to reg. school this yar and has had no problems with bullying that I know of.They still will not implement an IEP or any sort of help for him. They say they dont have the funding and his grades are too good. I told them he needs help with the social aspect of things espeacially since he is 14. He starts high school this coming year and still I have gotten no help. I have been trying snce he was 10. The only help they offer is to tell me to homeschool my son if I feel it is necessary. This would be fine,only,he doesnt want to be homeschooled and I cant help him with social skills the way he needs to be helped. It's frustrating!

Re:Experiences with Schools: The Good and The Bad

unourjeluz — GMT

I would also like to add,my son was taken out of the gifted program. Not because his grades were bad,but because he would finish his work earlier than the rest and they thought that it was a distraction for the other kids. The rule was when they finihed they were to play quietly on the internet until the others had finished. Him being on the internet was a distraction because the other kids would watch what he was doing instead of doing their work. :(

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Hi unourjeluz, and welcome to IAN. :) I am so sorry to hear about the tremendous difficulties you have had with the schools. I have all too often heard parents talk about these kinds of experiences, especially when their child has a "high functioning" autism spectrum condition that the school does not acknowledge. I would say that if your son has received a professional diagnosis from a reliable source (which it sounds like he has), you may have more power than you realize to get an IEP for him. You may need some assistance - perhaps from an advocate who, for a fee, would come with you to the school meeting and lay down the law regarding the Individuals with Disabilities Education Act (IDEA) which determines what children on the autism spectrum are supposed to receive in terms of their educational opportunities. Learning about the law yourself is also important, because once you begin talking in terms of the law at a school meeting, it often changes the entire tone. You may want to read our "Back to School 2009" article, and look at some of the resources regarding IDEA and IEPs at the end of the article: http://www.iancommunity.org/cs/ian_research_reports/back_to_school_2009 You may also want to contact your local chapter of the Autism Society of America to see if they know of anyone who is working as an advocate and could help support you in meetings with the school. (I don't mind telling you that I myself turned to the ASA when I was moving to a new place and needed an advocate. The other parents there recommended one, and she helped me very much as far as getting my son's program in place once we had moved.) To find your local ASA Chapter: http://www.autism-society.org/site/PageServer?pagename=community_chapters I hope this information will be helpful, and that you'll be able to arrange an improved situation for your son soon!

Re:Experiences with Schools: The Good and The Bad

ASDtrifecta — GMT

We've had some absolutely wonderful experiences. The school staffs we have worked with (at four schools in the district) have done everything they can think or and are great at communication. This past fall our youngest son (diagnosis Mild to Moderate Autism) started Kindergarten. Everything was great until about two weeks in when he seemed to realize he wasn't going back to his old school. From there it was meltdowns and aggression city every day for a long time. In addition, his brother who is two years older goes to the same school and they are feeding off each other's negative behaviors. The school requested an IEP meeting to discuss the situation. We are feeling a lot of pressure to send our youngest son to a day program at a facility an hour away. This pressure is not coming from the school staff but from the director of pupil services for the district. Three times this man has made a point of telling us that any decision has to be made by the IEP team. Not the parents, the team. Even a decision to send one of the boys to a separate school. We have been hearing about other families in the district having problems with this man. I'm not concerned that I can't handle the situation, I have a lot of resources in friends and family, but I am angry that someone who hasn't spent more than ten minutes with my child would presume to know what is best for him. I'm angry that this man may be depriving special needs students of the proper resources within the district. This kind of thing should not be an issue. Our children have enough challenges without ambitious bureaucrats playing power games with their futures. And that's true for all children.

Re:Experiences with Schools: The Good and The Bad

Billsburg — GMT

We have had very few problems at school for our 8 yr old with ASD, I'd place him in about the middle of the spectrum, in some areas he is lower functions and in others high. We are in a county in Virginia that is full inclusion, he is in a mainstreamed classroom. He started there in the early intervention program when he was 3 and first diagnosed with developmental delays with communication disorder. When he was 6 we took him to Virginia Commonwealth University that has a great school of autism research where he was diagnosed with ASD. From the beginning we worked closely with his school. We spent time getting to know the teachers and the administrative staff at the school, which I think really helped. His kindergarten teach was awarded teacher of the year at the school primarily because Dalton was her first student with special needs and the way she worked to come up with innovative ideas to help him. The vice-principal that is responsible for the schools Special Ed programs has worked very hard to get him the things that he needs. The school is bringing in autism specialists to work with the Para-educators on techniques to help students with Autism. The school views Dalton as the "alpha child" since they have several students in their early special needs preschool program that have similar behaviors that he had at 8. I think we partially got lucky to have some really good teachers and administrators that really want to help, but I also think the way that we handled dealing with them from the beginning also helped. We didn't go in and demand they change everything and wrap the whole school around our ASD child. We worked with them to make modifications that were logical and didn't cost anything. For instance, Dalton has it in his IEP that he can wear a baseball hat all day/every day. The reason we gave them was it provides sensory input and, more importantly, keeps him from banging his head on the floor/desk. We told them that was the reason, they put it in the IEP, no questions asked. He has full time aide, two special needs teachers that work with him, plus his regular teacher. The lunch room was too noisy for him, now that do "lunch buddies" in the classroom. Two of his classmates eat lunch with him in the room, which is great as it is less noisy and he has the opportunity to improve his social skills. When he was in kindergarten, it was his SpEd teacher's first year teaching. She was great and took every suggestion we had. We provided her with books we had on ASD, she read them and used the techniques in them. This year she started a social skills group at the school, using existing resources and funding. My wife is also very involved with the school, she is on the PTA board and this year established a Special Needs committee for the PTA that will meet to work to raise money the county doesn't have to support the special needs students in the school. Long winded I know, but I think that the schools want to help, most of the time they just don't know how or they are under so much pressure from the city/county/town to cut the budget so they seem like they don't want to help. Working with the school, being reasonable, understanding their side of the issue, and take into consideration the other kids in the school worked very well for us. We know that at least until he starts 6th grade at middle school we have a partnership with the teachers and administrators at our school that really is working to Dalton's benefit.

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Welcome to IAN, Billsburg, and thank you for your post. :) It is important to report on what works, because it helps people imagine and try to create the most positive school-family partnership possible.

Re:Experiences with Schools: The Good and The Bad

Billsburg — GMT

Thanks Connie, I heard about the IAN Project on the radio during the Don IMUS show, not sure if it was his advert or the local radio station, but I'm glad I listen on the way in to work. My wife and I are always looking for resources on autism and what works and what doesn't. One thing I would like to maybe see deals with scripting. Our 8 yr old mid-to-high functioning ASD son scrips constantly, if he sees something in a book, in a song, on the radio, on the computer, or on TV that strikes his fancy he will script it all day, during school, at home where ever. For example, he listened to the book Chrysanthemum on the computer and that week during a stressful situation at school, he said "I'm not good enough", which the character in the books says. Needless to say the teachers at school were concerned that he was having a problem at school. We have now taught them to ask Dalton "what is that from?" when he says something strange. He will tell them what show, book, website, etc he is scripting from. I know it is a form of echolaila, but we are not sure what to do to control it. We don't want to take away his books, videos or other things that we really think he learns from, but we are not sure what else to do. Maybe the other ASD parents here will have some suggestions.

Connie (IAN Staff) wrote:

Welcome to IAN, Billsburg, and thank you for your post. :) It is important to report on what works, because it helps people imagine and try to create the most positive school-family partnership possible.

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Billsburg, I think many children with ASD do this type of thing, or something similar. It does have the flavor of "echolalia," but it may also be related to the tendency to have a "special topic" -- and these can change over time. The topic might have been Pokemon for awhile, for example, and then switch to Star Wars or something else as kids get older. Still, part of this does seem to involve memorizing great amounts of information and sometimes saying it back. Depending on functioning and age, a child may just repeat lines from a video, or try to have a conversation about the topic that goes on and on. My own son, who is 15, is currently very focused on video games like "Halo" and will pace back and forth, repeating huge chunks of dialogue. The trick is to get to the point where a child knows that this is OK for "relaxation" time, but not something they can do in the middle of the school day. We have an article on special topics and how parents and teachers can use them to best advantage here: http://www.iancommunity.org/cs/about_asds/the_special_interests_of_children_with_aspergers I think it is always a challenge, when dealing with stimming or obsessive interests, to know how much to allow. How much is too much? If the behavior seems to be a comfort or a pleasure to the child, how can you "bound it" so it's not taking place inappropriately? And is there any way to use it as a reward in order to encourage behaviors you want the child to develop? I'll be interested in what parents and teachers have to say on this topic.

Re:Experiences with Schools: The Good and The Bad

CAMmom — GMT

Good Morning All. Been there, done that, got the battle scars to prove it. I am in Eastern NC, just to show you the distinction from the rest of the state, Raleigh/Charlotte (where all the networking goes on). An Autism Convention in the east would be a welcome sight. My son was diagnosed at age 14. From then on my husband and I were very active in the IEP process. We requested quarterly meetings with all of his teachers, not just the ones where he wasn't doing well. He was mainstreamed a good chunk of the day throughout middle school and high school. English Literature, writing, poetry were his downfall. Math, Science, Physics, Architectural Drafting are is strong suites. His handwriting would make your physcian's a scholar in penmanship. As for bullying in school....he could care less what anyone said about him. "I don't live with them, their words are meaningless." The other kids wouldn't touch him (he is the size of Ray Liotta in Good Fellas, big Irish/Italian boy). He is heavy into video games and could tell you which Final Fantasy series was the best (VI or VII). He appears aloof, apathetic and can be snobbish. I realized after all these years, that is AS. He is messy to a fault. (not like Monk at all). He is now attending a well known Eastern NC university and is the only self advocating AS person. Imagine that. To my knowledge there aren't any programs like Marshall has in NC at the college level. (btw, you have to "pay" extra for those services at Marshall, upwards to 5K additional). He takes no medication nor accepts any SSI because to him it is "not logical" to take money you haven't worked for. My husband and I have access to all of his college transcripts and access to all of his teachers and professors. The Disabilities Offices at the University has been big help, but lacks the funding to reach out to AS students. I have been on several websites for Autism and Aspergers. All seem to address children under the age of 10. Please keep in mind, these children, do "grow up". What you do now, depends on whether they are college bound or in employment training. I have searched the entire internet for Grant, Scholarships for young adults seeking higher education who have Autism/Aspergers. They don't exist. If my son was under the age of 17, he could get help with education. College, you are on your own. I have contacted the AS of NC and the National...as well as Autism speaks. I found nothing in the way of higher education, and very little info on AS as whole working with colleges/universities (with the execption of Marshall) Disability Offices. At my son's school, the "student" has to "self advocate". Ok, how do you get someone with "slim to none" social skills to "self advocate"? As a parent, I encourage all of you, this is just the beginning. You have to fight and advocate for your child from dawn to dusk. It doesn't end at high school. If there are grants and scholarships out there for kids on the Autism spectrum...please let me know what I missed. My son got the Pell Grant, NC lottery fund and the Stafford Loan. Word to the wise. Send your child to Community College for the first two years. Declare him/her independent and have them work part time, claim their own taxes. When it is time to transfer to university....the grant money will be higher, as it will be based on "the child's" income, not yours. We learned the hard way. Yes I know about TEACHH in Greenville. During our son's middle and high school years, we worked full time...which made it impossible to drive 50 miles for him to get services. Ironically, he lives in Greenville now and is about 3 miles from the Children with Autism office. However, he is no longer a "child".

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Hi CAMmom, and welcome to IAN. :) Thank you for sharing the information about your son's post high school experiences. This is an area of huge concern for so many. Out in the research world, I am beginning to encounter researchers very much interested in the transition process, and people are beginning to study what is happening as youth transition from high school to college. We are definitely going to need to know what models are successful, as far as paths to adulthood for individuals with different goals or levels of functioning. For starters, we are going to need to do some "service epidemiology" -- who is getting what in terms of help at college, Vocational Rehabilitation (job help), housing, etc. -- and what is working? I do know about one scholarship for individuals with ASD. It is given by the Organization for Autism Research (OAR): http://www.researchautism.org/news/otherevents/scholarship.asp

Re:Experiences with Schools: The Good and The Bad

Full Time Dad — GMT

Oh man have I got a story :mrgreen: let me lay it out. When my oldest was 4 we enrolled her in the prek program in our local county school district. I went to the school and gave them a complete history of my oldest(this consisted of a file folder containing copies of all medical and psychological tests and professional diagnostics that led to a finding of classic regressive autism. At this time i requested an IEP. and was told it would be no problem. Now Previous to this I had read and reread both Wrights Law and the IDEA Act and was familiar with both. It was at this IEP that I first began to worry. Attending the meeting were the Principal,Prek teacher,the schools Pshycomatrist(still not sure what that is exactly though have researched)and the director of special education for the school. After a 30 min recital of the directors history and credetials we were finally asked about our child, now my oldest is no perfect child(who's is?)but my wife and I both believed her to be a sweet and loving child and most people percieved her as such. the description of our daughter and her behaviour is something my wife and I have had to recite to many,many people(Y'all know the drill"he/she's autistic and ____" (so deal with it bub :mrgreen:)so we proceeded to run through it once again. Imagine my suprise and then well hidden anger(very well)when this director looked at us and said "the child should be instatutionalized" :shock: what? Untill then no other professional or person who had ever met my child had or has since made this statement, but it gets better. Then i find out(of her own admission) that the Director has not even met my child(school is in session) nor has she read over any of the paperwork I provided to the school. She then(proudly :shock:) presents a complete and ready to go Iep for my daughter. How amazing here you have an indivigualized education program for a child you know ABSOLUTLY NOTHIUNG ABOUT!!!!!(they got em some of those mindreaders over there I betcha :mrgreen: ). So I explained to all present what exactly was wrong with this charade and requested a new IEP for 6 weeks later. I (for some reason) assumed that the school would take the time to evaluate and review the information available in order to prepare a program to meet her indivigual needs. Then I get a call from the speech tharapisgt that works with my child to inform me the school is calling her office and requesting information on my child(they have it on file already :roll:) Also during this time my child is steady losing skills and aquiring nothing in return. At the end of the six weeks the proposed IEP meeting (take 2 :)) took place. attending in person where myself, the principal, prek teacher, and psychomatrist. On paper attending where all the above and also magically the Director of special education(not only csn she read minds but she's friggin invisible too!?!) anyway the school has this new "revised" IEP for me boy are they proud of it at the end of the meeting I leave the school and immedialtly upon getting home email a photocopy of the IEP to a dan dr and his associates at an autism clinic that I attend, he responds with the name of a book and a page number. I get a digital copy online and go to the page and guess what is on my screen? word for word the exact IEP that I recieved from the school (down to the punctuation and quotes in the margin folks) :evil: So I demand a meeting(NOT IEP SETTING) and simply ask why? Its then that the blame game starts, the teacher turns out is pulling double duty as a pre k teacher and as an SLP, she has a blind child,deaf child,downs syndrom child,2 physically hanicapped, and 2 autistic children all at one time and most of the time she has them alone. The principal never said a word and the director stated that she"didn't know much about this new stuff" :shock: :?: :shock:. So now mine are 6 and 4 and I homeschool. Since last July 09 I've been FULL TIME DAD and though the days are long and the nights longer its worth every yawn when they get somthing for the first time and you see it click in those little eyes and then..... they smile. So not that all schools are bad ( many are doing good things for their kids) but if yours won't do it fire em and do it yourself, IF I CAN DO IT ANYONE CAN (p.s. did i mention that over 50 kids were withdrawn from this sped program in the month after I pulled mine? amazing what parents talk about aint it?) HAVE YOU LAUGHED WITH YOUR KID TODAY? :lol: FULL TIME DAD

Re:Experiences with Schools: The Good and The Bad

Connie (IAN Staff) — GMT

Hi Full Time Dad. It is always to disturbing to hear of families having this kind of experience in the schools. There seems to be such a huge variation of experience, from instances in which the schools go the extra mile and create an atmosphere that is accepting and nurturing to instances where families are driven right out of the school system entirely.

Re:Experiences with Schools: The Good and The Bad

Domisdad — GMT

Hi everyone, My wife and I have decided to send our 6-year-old child to a special school for children with autism (and normal IQ), although he could most likely be successfully mainstreamed. The teacher:child ratio is 1:7 (as opposed to 1:20), there are specific visually oriented and structured teaching methodologies, social behavior classes and up to 4 hours of individual coordinated psychomotoric and speech therapy per week. The academic standards are the same as for other schools, but the child may take more time for some courses compared to others (as autistic kids, including our own, tend to have uneven talents). Of course we're second guessing our decision and our primary concern is overprotection and depriving him of the opportunity to learn enough coping mechanisms by immersion in a world of NT's. Our plan is to have our son join the boy scouts and/or start sports to expose him, but we wonder if it will be enough. The alternative (mainstreaming) would imply 2 hours of individual teacher/child help and another two hours of therapies per week. There tends to be a policy of mainstreaming as much as possible in the US. Both educational options come at no cost (financial/practical) in the country we live in, so there are no other considerations. Any opinions?

Re:Experiences with Schools: The Good and The Bad

SaraB — GMT

Hello Domisdad. I think you have made a great decision. I tried to keep my little boy in a regular elementary school for 1st, 2nd, and 3rd grade, and it kind of worked, but he wasn't really making friends and I think he spent mountains of energy just dealing with the more crowded classrooms, noise, and social demands. (He had an aide, and all that.) By 4th grade, he was falling apart and having frequent meltdowns. So I put him in a special school with a teacher/student ratio of 1/8 and no aide, and he blossomed like I had never seen before, and was happier and more successful than he had ever been. The school was able to make every aspect of the day "therapeutic", so instead of not being able to cope with chorus (in the regular school), he could totally be IN the chorus. At first, I worried about him not being with the regular kids, but when he made friends with the kids in the school, I didn't really care about the "regular" kids any more. A friend is a friend. Now, a few years later, he's in a regular high school program, with some special ed support, and doing fine. His friends still tend to be other kids with Asperger's, and that's fine, too, as far as I'm concerned. One of his friends once said to a group of parents, "You shouldn't worry about us being friends with the 'normal' kids. We'll get there eventually. It's fine if learn to be friends with each other first." I thought that was great.