Experiences with Schools: The Good and The Bad

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?

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

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

Connie,

Thank you for the link and the support!

~Anilise

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.

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.

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

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.

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.

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.

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

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!!

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!

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.

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/