Experiences with Schools: The Good and The Bad

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.

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.

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.

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.

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

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.

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.

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!

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.

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!

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.

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.

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.

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.

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.

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".