Mom with Autistic kids about ready to snap!

S

Spinin28

Cathlete
This year my twins started middle school and I just can't believe how different things are at the middle school level!!!

The boys have been diagnosed with Asperger's syndrome, one of them was diagnosed 3 years ago. My other son was given an improper diagnosis of ADHD and Opitional defiant disorder a year ago, and it has since been changed to Asperger's syndrome this year, when we saw a different psychiatrist that specializes in Autistic disorders. The weird thing about that is the old psychiatrist diagnosed one twin with Asperger's, and then the following year he diagnosed his identical twin with sever ADHD (mostly because my son was on concerta and Zoloft for a short time, and it seemed to help him a little) and ODD(At the time the diagnosis was made my son was taking Zoloft and was having awful rages, after we took him off the Zoloft the rages went away) The behaviors and issues are identical, other than my one son has some anger issues.
The other weird thing is that 3 years ago the Psychiatrist evaluated my son for about 20 minutes, and he looked me right in the eye and told me he had Asperger's. I just took his word for it but I have since went back and looked at what he actually diagnosed my son as, and what he wrote was PDDNOS rule out Asperger's/rule out ADD/ADHD...WTH???

I decided back in the Elementary level not to give the school the boy's actual written diagnosis, and they were fine with that. They always treated the boys as if they has Asperger's regardless of having a paper telling them that they had it. This was a non-issue at the Elementary level, as their issues were and are pretty obvious. The boys were tested through the school and were both found to have learning disabilities, and they both have IEP's and a behavior plans...etc..Their offical label with the school is learning disabled, and that has never been an issue until this year. So basicly until the school has the actual diagnosis in their hands they don't believe you. Plus they don't have to accept the diagnosis that your psychiatrist gives, if their school psychologist does not find your child to have Asperger's...WTH???? I am still shocked over this!

I told the special resource teacher at the start of the school year that both boys are Asperger's, however there is no evidence of this in the IEP..but their issues are pretty obvious.
At the start of the year there was a major issue with my one son, and he made a empty threat agaist this particular teacher. At the time he made the threat he was under a lot of stress and was made to sit in a chair while 2 adults stood over him and yelled at him. This event happened after several other incidents when my son was not handled properly when he began to have emotional meltdowns. I had spoken to this person several times about how to handle my son in situations like this. Many phone calls had been made back and forth between this person and I, most of them after the school day was over. After this event took place I was never called!!!
The next day my son was pulled into an office by this person and the assistant principal. They went on to tell my son that he was going to be taken to a juvenile detention center because of what he did...at which time he began to beg and sob not to be taken. Then they called the school police office on the speaker phone, and then told my son he was coming to get him and take him to JJC..but if my son promised to never do that again they would not come and get him..but if he got in any more trouble he would be taken there ASAP! ARGHHHHHHHHHHHHHHHH! I was never called..NEVER!!! Nothing came home about the incident until the following week..my son was finally able to communicate to me what happened, and when I called to talk to the person that it happened with, she acted like she did not know what I was talking about!!!! ARGHHHHHHHHHHHHH!!! This entire incident should have never happend!! NEVER!!!

I am so frustrated with the special resource teacher!! My boys complain about her on a daily basis, this has never happened before. The boys have always liked all of their teacher's and or aides until this year. The boys tell me that she yells at them when they are alone with her, and that she grabs my one son by his wrist and makes him go into her resource room when he is in trouble. The boys are telling me that she picks on them all the time..for instance if they are running to the lunch line along with other kids they are singled out and punished. The boys are not allowed to ask question in class, because sometimes they ask irrelevant questions...arghh! Both boys have told me that at different times someone will come over and force their hand down when they have it raised to ask a question...WTH???? The list goes on..believe me!

So one day a week ago I was talking to this resource teacher and I told her that we finally had my son's diagnosis of Asperger's. At which time I merely asked her how many children she has worked with that had Asperger's syndrome, and what kind of training she had with Autistic disorders..at which time she became VERY upset and told me that I was asking inapporpriate questions and that I would have to speak to her superiors about her credientials and she set up a meeting..WTH???
We had our meeting yesterday and she tried to make an ass out of me by spouting off her educational creditals..none of which sounded like any specific training in autistic disorders to me. I gave them the diagnosis that the Nurse had typed out for me just explaining the axis diorders, but it was not signed by the doctor...sigh! So you zeroed in on that right away! I have a 6 page diagnosis about my son and most of it is social history and issues he has with his father and it is private and none of their business. So she made sure to tell us that he does not have Asperger's according to them!!! I was like WTH??? I took time to make a list of my son's issues and some solutions for behavior problems, most of which I got off the web and from a few books I have about Asperger's, She would not even look at the list even after I mentioned it several times that I wanted to go over it to help them deal with my son. They started a functional behavioral assesment back in December and it still is not done and wn't be until March....The funny thing is there was plenty of time to have a meeting about her credientials, but no time to go over how to help my son!! Nice eh? I insisted that we go over some key points, so we finally did...all of my suggestions were praised by the principal and she actaully made this teacher go over my 3 key points on my solutions page. Since when does the school not want parental suggestions???? Then at the close of the meeting the teacher made sure to tell us once again that my son is still considered learning disabled..cause the letter was signed by the RN...WTH??? She also made sure to tell us that he will be treated like he is learning disabled until she sees the actual paper telling her otherwise!!

I am just beside myself!!

FYI:
The school Psycologist is currently evaulating my son for Asperger's syndrome as well.
Plus I have been taking a parent advocate to all my meeting with the school!
 
>This year my twins started middle school and I just can't
>believe how different things are at the middle school
>level!!!
>
>The boys have been diagnosed with Asperger's syndrome, one of
>them was diagnosed 3 years ago. My other son was given an
>improper diagnosis of ADHD and Opitional defiant disorder a
>year ago, and it has since been changed to Asperger's syndrome
>this year, when we saw a different psychiatrist that
>specializes in Autistic disorders. The weird thing about that
>is the old psychiatrist diagnosed one twin with Asperger's,
>and then the following year he diagnosed his identical twin
>with sever ADHD (mostly because my son was on concerta and
>Zoloft for a short time, and it seemed to help him a little)
>and ODD(At the time the diagnosis was made my son was taking
>Zoloft and was having awful rages, after we took him off the
>Zoloft the rages went away) The behaviors and issues are
>identical, other than my one son has some anger issues.
>The other weird thing is that 3 years ago the Psychiatrist
>evaluated my son for about 20 minutes, and he looked me right
>in the eye and told me he had Asperger's. I just took his word
>for it but I have since went back and looked at what he
>actually diagnosed my son as, and what he wrote was PDDNOS
>rule out Asperger's/rule out ADD/ADHD...WTH???


I'm sorry for all you're going through and I can't begin to imagine how hard it must be. I thought I could help a little with this one part of your question. It can be very difficult to diagnose small children. Symptoms associated with Apergers can be associated with several other disorders, so they try to narrow the field by "ruling out" the other possibilities. PDD just means Pervasive Developmental Disorder (not sure what the NOS part means). Your doctor is basically listing all the working possibilities. He probably doesn't want to commit just yet to a firm diagnosis. It can be very tough to make the correct diagnosis in small children. HTH a little bit, and I'll keep you in my prayers.

Michele:)
 
Just a short reply to tell you I know what you are going through. My son has Prader Willi Syndrome and we have had nightmares dealing with the county MH/MR agency. We didn't have the same problems with the school system as you, mostly because we were naive enough to believe everything they told us. DS graduated 3 years ago and was basically passed through the system because no one knew how to deal with him. At the time, we thought they were doing us a favor. Looking back, I wish we would have realized what was going on and pushed harder with the school. My suggestion is get a lawyer. Best wishes and good luck.
 
NOS=Not Otherwise Specified i think its meaning with PDD is that they show syptoms of aspergers and austim but not the standard medical diagnosis.they go by some guidelines that a child has to show these syptoms and that many. i read it in Bryna Seigal's The World of an Austic Child(title along those lines). its very medical termed book but i think it could be helpful.

i can only advise trying to find an advocate in your area to help fight with you and help with any legal issues. viola will always have austim labled with her since the severity of her symptoms. so i am not sure how to help you in the department of IEP with proper diagnosis. i really do hope it works out for you b/c its a hassle. parents like us have to take the brunt of such crap b/c they just look to make life easier for them and line their pockets. its why i switched to this school but viola's other school would just lable her disabled keep her in special ed b/c she couldn't handle mainstream classes and in turn appomattox county would get extra money for their special ed students. sickening isn't it??

kassia



When they discover the center of the universe, a lot of people will be
disappointed to discover they are not it -- Bernard Bailey
 
Kassia,

I do have an advocate, I have been working with her since the first case conference, and she went yesterday as well.
 
Denise, I am so, so sorry to hear about your ordeal. My son has sensory integration dysfunction and the smallest, most harmless things can trigger meltdowns. Unless one is familiar with the symptoms and treatment, one would say he has ADHD, and SI symptoms do mimic ADHD. A lot of SI kids are sadly misdiagnosed and put on Ritalin, when what they need is really occupational therapy.

From your post, I can see that your sons' school is no way qualified to handle special needs children. I've had it with teachers when my son was as young as 3. I notice that a lot of teachers brag about their special credentials, and as beneficial those might be to their careers and POSSIBLY to the kids under their guidance, if they don't have the patience and the HEART to deal with a child -- special needs or not, difficult or not, since we mothers all know children have their moments -- their special credentials are useless.

I can understand your anger and frustration. In my short stint as a mother, I have realized that so much lip service is being given to the welfare of children, but when push comes to shove, the children who need the most care and understanding get to be marginalized. It's not because of the lack of knowledge. It's the lack of willingness to confront a problem and work with a family. Maybe it's because of the big class sizes. Teachers get overwhelmed, and I wish they'd just admit to that than keep bragging about their special credentials.

We have been very picky about schools. Before I put my son in his current school, I had a long talk with the director about my son's condition, the treatment, the home therapy, his triggers, and good solutions to usual problems, which includes reading his body language, giving him a corner to cool off, and very simple things like tight hugs (for pressure) and back rubs (for sensory input). I felt I had to educate everyone who had contact with my boy during the day about what is going on with him and what could be done. The school has exceeded my expectations. They beat Montessori in that regard, where teachers and directors brag about their credentials that produce geniuses. *sarcastic laughter, barf* My son's school has been very good about calling me when something is wrong and even asking, "Are we handling this correctly?" We wouldn't have known about this school if my son's OT didn't have it in her resource file. The lesson I learned: use all my resources at hand, make lots of phone calls, get my story out there, get myself and my child heard. I'm sure that you are already doing all this. I hope you can find a place for your kids, a place where there are TRUE professionals for these kinds of cases. And like Robin said, get a lawyer. Sometimes, even when you are heard, people choose not to listen. A lawyer can help you in this regard. My thoughts are with you.

Pinky
 
OH MY GOSH DENISE!!! Do your boys each have an IEP? My son was initially diagnosed as ADHD while a preschooler and has always had one. (the correct diagnosis is now Asperger's) There have been some bad teachers along the way (he's now in 8th grade) but whenever we run into trouble with one and it doesn't seem like talking with them will help we request an IEP meeting. At these meetings my DH and I are prepared with a list of things that we want and make sure the get on there. That is not a panacea though and I am in almost daily contact with his resource teacher. Thankfully, she works with me so that we can head problems off at the pass.

My son's test scores are off the charts in some areas (math being one of them) but lower than average in other areas. This year he is in an advanced algebra class and because of his deficits he struggles terribly. On top of that his teacher is the elitist type and wanted no part in giving anyone extra help in her advanced class. The thing that saved my son was that he has an IEP with a list of accomodations that he is *legally* supposed to get.

I feel for you because I know what a tremendous amount of work it is to raise one of these children. Unfortunately, it seems to be taking more energy as the school work and social scene become more complicated.

Has your advocate been able to help you at all??????? Has she told you not to sign the IEP if you don't agree with what is on there or what is going on? It is my understanding that not signing it is what elevates the situation on up the chain out of the teacher's hands and toward resolution.

Bottom line is that your boys have the right to a proper education just as any non disabled child has. I do so hope that you are able to work things out and I feel so bad for your boys right now. Hang in there and please let us know how it turns out!
 
Denise, this sounds awful and I am so sorry for your pain and frustration, and even more sorry for your boys who are being taught that adults in authority can't be trusted.

Honestly, in your situation, I would switch schools. (Although if you stay in the district this may not help since the IEP resources tend to be assigned by district rather than individual schools.) I would contact the school board and the principal in writing and spell out exactly what has happened (as unemotionally as possible). I would request a meeting to discuss the situation and insist that the appropriate persons be there (whoever was involved plus the school board plus the principal, etc.). If they don't give you satisfaction, go to the newspaper or the local TV stations - school boards hate bad publicity.

This person should NOT be dealing with special needs children, no matter what her academic credentials.

I hope it works out for you. My son has an IEP and I've found that insisting on administrator involvement has been key in getting what he needs.

Marie
 
Denise I am so sorry you are going through this. ((HUGS)) I am the admin assistant for our spec ed dept and unfortunately I do have to agree with you about not being able to change your sons' diagnosis w/out the school psychologist's testing (even if you have a written diag from your dr).

I feel sorry that your sons have such a horrible teacher. Sounds like her actions are totally inappropriate. And I cannot believe that the way that they are threatening your son with JD, etc. The school (either the spec ed director or principal) should be calling you FIRST to make you aware of the situation not making those kinds of threats towards a child. You have every right to be upset. If you are not happy with the IEP, you should let his teacher know that you want to reopen the IEP and be specific with what types of changes you would like to see. If the teacher is not willing to do this then you need to go straight to the spec ed director and schedule a meeting. I know at the school where I work we have problems with the regular ed teachers not wanting to follow the IEPs which is why my boss (the sped ed director) gets involved. Some of the reg ed teachers just do not want to take the extra time that is needed with some of the special accomodations.

As the previous poster stated, "Your boys have the right to a proper education just as any non-disabled child does". I know it can be hard but be persistant, keep your head up and don't accept anything that you are not comfortable with. Your boys are lucky to have such a great mom like yourself.

Let us know how things go. I'll be thinking of you.
 
Your post was so long that I missed the part where you stated that your boys have an IEP and a diagnosis.

In my son's case we had to have a diagnosis from outside the school before they were willing to check that autism box on the IEP even though all of the tests the school district gave him indicated that he had Asperger's. Even after we obtained the diagnosis from an outside agency it took two more years and a new school psychologist to check that box!! Why? I do not know!!! But at least in the meantime we were able to get the help from the school that my son needs.

It sounds like you are getting the supreme run around and I say again, DON'T SIGN THE IEP if you are not getting what you want!
 
Hi,
I'm sorry to hear about the difficulties you have been having recently in getting your children appropriately placed. It's good that you have an advocate; however, if you can afford one, I would recommend hiring an attorney. Until recently, I was an attorney for a very large school district, and I handled special education cases. Communication is key to resolving problem issues, and I found the parents who were represented by counsel appeared to be most satisfied with their outcome. I really believe it's because they trusted their attorney to make recommendations based on their best interest. An advocate can do the same if knowledgeable, but in our district we had several advocates who were more "pot stirrers" due to personal issues they had with the district rather than "problem solvers" solely looking out for the best interests of their client.

In any event, I suggest keeping the lines of communication open, and make sure your advocate shares the same philosophy. Sometimes emotions get so heated at the school level that an outside look is needed. The hiring of an attorney by a parent will usually get higher level district administrators involved quickly. Although you can access those administrators without an attorney, I think your needs are likely to be more quickly resolved if you hire an attorney knowledgeable about special education law. I can assure you as a former school attorney that our goal was always to meet the needs of the children we serve, even though the process sometimes appears to make us adversaries.

Good luck!
 
Eek! That teacher sounds aweful! I would seriously consider pulling the kids out of school until they can be appropriately placed. My son has Aspergers too and I swear the only we were able to get him the services that he needs was to move to a different state. We ended up moving back but the school had to do everything on his new IEP.

Kristy

I solemnly swear that I am up to no good
 
Denise - I am sorry you are going through such difficulties with the school. I have a 9 yr old son who has had very similar experiences. When he was 5, I took him to a neurologist who did a five minute test and said "he has ADHD," handed me a prescription, and sent us on our way. I took him to another doctor who couldn't figure out what he had. We’ve seen so many different doctors I almost gave up at one point. Anyway, currently we are seeing a psychiatrist who has diagnosed him as ADHD & PDD-nos (PDD is low-functioning autism, I believe and nos is a general term that refers to a variety of high functioning autism disorders. I think Asperger's falls into the PDD-nos category.) We also see a psychologist for therapy but she has been very helpful in dealing with the school situations. She will attend ARD meetings and voice her opinion and because of her experience working with schools, she advises me on what rights I have and what action I could/should be taking.

A few years ago, ds had a similar situation to your son's situation. At the time, ds was very frustrated with school and told another classmate one day that he wanted to burn down the school. OMG! Fortunately, the teachers knew him well enough to know that he was not capable of doing those things. (I asked him HOW he would burn down the school and he stared at me blankly and said, "Don't you need a fireplace to start fire?") Still, they told us that because of the zero tolerance policy, they still had to take his words seriously. (At this time, he did have an IEP and had ADHD on his record but nothing regarding Aspergers.) He had to apologize to the teacher but they threatened that if it happened again, he would be sent to the “alternative” school! Well, my son definitely would not benefit from going to a school like that! (who would?) It was then that I took action to get a proper diagnosis on the school record.

The school did testing and diagnosed him as “autistic”. While I didn’t really agree with him being labeled only as autistic (according to our school district, they don’t define it any more specifically than that so anyone with asperger’s or PDD would be classified as only autistic), our own psychologist helped me see that it would be more beneficial for him to have it because it would excuse him from certain things that he otherwise would not be excused from. Anyway, I had him transferred to a different school (within the same school district) that has a program for all autistic children (both low and high functioning) and he is doing extremely well! He even actually likes school whereas only a few months ago he yelled and screamed to me each morning about how much he HATED it! A different school & different (specially trained) teachers can make all the difference.

One thing I have learned is that YOU as the parent are in control! (at least I’ve learned this is true in the state of Texas) If the school says he needs “this” on his IEP, you can say “NO, I don’t agree to that” and they can’t do it no matter how much they think it would be beneficial. Anything they recommend, YOU have the power to say NO! AND, I think it’s rarely happens, but if the school district admits they don’t have the resources for him to learn effectively, the school district must pay for him to go to a private school that can accommodate him and his needs. (I think that is only for kids who DO have a disability on their records, though).

I would recommend allowing the school to test your son. The school psych tested my son and she came up with the autism diagnosis but said that it would only go on his record ONLY if I agreed to it. If I didn’t, they couldn’t put it on his record. Our own psychologist also assisted with this and spoke directly to the school psych and gave her own opinions and ideas. Another option is adding a Behavior intervention plan, if your sons don’t have one already. I think that way if your son has a certain behavior that is typically punishable by suspension (for example) and it is found to be a behavior related or caused by the disability, your son will be handled differently than the typical child such as talking to the school counselor about what happened and how he feels he could have handled it better rather than suspension.

You may be able to find a good psychologist like the one we are seeing who (in addition to therapy, of course) knows your local school district and can help you like ours has helped us. I’ve learned that I have to be more firm and tell them what I want which has been hard for me since I am typically shy and soft-spoken. Just remember that you are in control.

Anyway, sorry this is so long. Please feel free to pm me if you’d like. Good luck!
 
I am so sorry you are dealing w/such problems with the school system. As a mother of 4 sons, 3 adopted w/1=high functioning autism/mild cerebral palsy; 1=bipolar/FAS; 1=asthma/allergies, that is one reason I homeschool. BUT HS is not for everyone & it is horrible the things a parent must encounter in today's school systems - public & private. I've done that also.

Every parent should have support & understanding no matter what the educational setting. Unfortunately, that doesn't happen due to lack of properly trained & informed school personnel.

I also went through years of trying to reach proper dx for my sons. And have spent some extended time in court settings fighting for them for various reasons. The dx doesn't make things any easier, but at least you know where things are coming from & can make your best effort how to proceed. It is so hard to spend time w/the friggin "paperwork" & bureaucrats (sp? had a rough AM), when all you want to do is love and help your children.

Bless you, & post anytime about these issues - there are several freq posting mothers here who will listen & try to help.
 
To follow, sorry this teacher is making life difficult for you all.

We have twins, a boy and a girl. They are now juniors and 17yo. He is Autistic. She is ADHD, bipolar with a couple of suicide attempts under her belt.

We know how good and how bad special ed can be.

A lot of the terms, autism, PDD/NOS, aspergers have been replaced by the latest term Autism Spectrum Disorder (ASD) by the latest DSM which spells all of this alphabet soup out.

We've been on the victorious side of the sp. ed battle most of the time. We always over armed ourselves with documentation, doctors reports etc. We would let the school test and then formally request copies of the findings.

Good luck is all I can say.

Dave
 
OMG!!!! You are all so sweet!!
I am crying!
Thank you to all of you!!

This situation is very hard as I feel like my back is up against a wall. We have an IEP for both boys, however currently on their IEP they are labled as "Learning disabled". We have had an IEP since 3rd grade. This IEP is the same one that we had in the Elementary level, so it is only specific for LD not Asperger's. The Elementary level always treated the boys like they had Asperger's...even without the diagnosis..thankfully! This special resource teacher will not accept what I have told her, and will only treat my son as learning disabled. So she tends to make a huge deal out of a lot of his Autistic behaviors and punishes him for them!! Arghhh!! Really nothing on the IEP will change all that much, just the way this woman treats my son will change. That is why it is so frustrating!! I feel like I am in a power struggle with this woman! I ahve taken my son to a Psychiatrist and he has a formal diagnosis, but it is a 6 page diagnosis with many comments about my son saying this woman screams at him and is physical with him. This is the reason I did not want the school to have this particular copy. That was why I called the office and the RN in the office wrote a letter with just the Axis diagnosis and nothing else, but it was not signed by the MD..and the special resorce teacher zeroed in on that immediately when I handed it to her...arghhh!! Then told me point blank that my son is not considered Asperger's!! I called the doctor's office again today and they are suppose to send me a signed letter from the MD through my fax today..I have not gotten anything as of yet.

We recently had a case conference in early December, at which time the school had already started an FBA: Functional Behavioral assessment. At this case conference I asked for an Autism evaulation through the school district. The FBA is still not completed and the school Psychologist is almost finished with her Evaluation process. I was told at the meeting yesterday that the FBA would not completed until March....WTH??? Unreal!

The advocate has been helpful but she is a bit of a scatter brain, and was confused as to why she even went with me to the meeting we had yesterday. I met with her last week for 2 hours talking about why were we having the meeting we had yesterday, she was some how under the impression it was a case conference...I told her 3 or 4 times it was not a case conference, plus I called her on the day of the conference and went over what I wanted to go over. So she was no help at the meeting whatsoever, and the she seemed kind of upset that she was even there...so... sigh!

Thanks to all of you! It is nice to know I have somewhere to get some help and advice.
 
Denise, how dare that teacher punish your son for his autistic behaviors??? That is uncalled for and totally unprofessional. What is she doing teacher special needs children????

When did you sign the paper for the eval to be done? In the state of pa, the school psych has 45-school days from the day that the parent signs the form to have the eval completed.

I just wanted to tell you again what a strong woman you are. ((HUGS))
 
>Denise, how dare that teacher punish your son for his
>autistic behaviors??? That is uncalled for and totally
>unprofessional. What is she doing teacher special needs
>children????

not to mention the school and this teacher can be sued,its ethically wrong and illegal. x(


kassia



When they discover the center of the universe, a lot of people will be
disappointed to discover they are not it -- Bernard Bailey
 
>Denise, how dare that teacher punish your son for his
>autistic behaviors??? That is uncalled for and totally
>unprofessional. What is she doing teacher special needs
>children????
>
>When did you sign the paper for the eval to be done? In the
>state of pa, the school psych has 45-school days from the day
>that the parent signs the form to have the eval completed.
>
>I just wanted to tell you again what a strong woman you are.
>((HUGS))

Dana,

In the state of Indiana they have 60 school days to get the evaluation completed. I have to go through and count how many actual school days there has been since I signed the paper, naturally you can't count vacation days, recess days, partial days..etc.. I am thinking they are pretty darn close to 60 days! The functional behavioral assessment should have been completed by now, as it was started at least a week prior to our meeting on 12/1/2005, so that figures their psychological assessment should be completed no later than March 15th.
I am thinking that the FBA should have been completed in 2 weeks from the start of that evaulation..the advocate seemed confused about this. so I really don't know how much time they have to complete the FBA.

Her unprofessional behavior just BLOWS ME AWAY! But under the law she does not have to treat my son like he has Asperger's unless she has a paper telling her that he has it! Otherwise he is just a "Learning Disabled" child..KWIM??

x( It is very annoying!
 
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