Newbie to Asperger's, have question

[stumom]

Hi, I was referred to this board by my mom, whose user name I don't know, but she might drop by to say hello if she reads this...

My 5 3/4 year old son has been seen by 2 mental health professionals (an LCSW and a PsyD) and will be assessed for a firm diagnosis in November, but I am told he meets the threshold for Asperger's. To complicate matters, he never went to preschool, so had limited social experience. His public kindergarten is a six hour day, and he has been having problems. I just wrote the appropriate letter asking for an evaluation, addressing it to the principal and the special education teacher. I was then told that night on the phone with the principal that I would be getting a letter from the school district telling me that they don't evaluate kids until they are in second grade. This does not seem right. Am I not legally entitled to have my son evaluated by the school district upon request if he is attending? I am in California, Oakland Public Schools.

I appreciate anyone's advice on this, especially if you can direct me to any kind of law that I can accurately quote when speaking to them about this!

Thank you!!!
Bonnie

 

[Piper]

Hi, Bonnie. I'm Piper on here (no surprise I'm sure!) I just posted about this on the Behavior challenge thread. I am still in shock about what the principal is saying!

 

[Luv Bunnies]

I would advise contacting your school district's special education department directly. In our district, it is referred to as the student services department. The people in that department know the procedures, laws, etc. for student evaluations. It sounds like your principal is clueless. Good luck!

 

[stumom]

Good advice, I will look that up right now in my handbook, and give them a call first thing Monday morning. In the mean time, I will ask my s-i-l who is a psychologist if she has anything to add. *waving* Hi, MOM! I just wrote a letter to the principal that I will not send...but it felt good. I feel so gullible!
Bonnie

 

[bookwormde]

Welcome, we have lots of parents with experience with Aspergers on this board so feel free to ask any question that you might have.

The principal and special ed teachers answer is a violation of federal IDEA regulations. I have heard of this happening in some states by typically CA has their “act together”, apparently not in this case.

Find out who the ED (educational diagnostician) for your school is and who the director of special education is for your district. Call the director and relate your story to him/her and let her know that you are officially requesting an evaluation under IDEA part B 300.320. I usually attach the page from the federal DOE website that states this but the site is down so I will provide you with the general link (it is worth digging through anyway). Let him/her know that 2 clinicians believe he is probably Aspergers and that you will also be perusing a diagnosis as a parallel effort to the educational evaluation. Let him/her know that you will be sending this request by certified mail to him/her and that you expect the allowable time for the process to start at the date of your first request to the school. I will be very surprised if the director is not extremely apologetic and ready to move forward appropriately, but if there are indications that they are not let them know that you are copying your request letter to the CA IDEA compliance official and the directory of special education for CA. This may sound a little confrontational but if the district does not even follow and understand this simple part of the regulation they probably need oversight to follow the rest so your child may get his needs met for an appropriate education.

http://idea.ed.gov

As for the clinical diagnosis, it is very important to find a clinical practice or medical center with an Autism department with experience with Aspergers and which keeps current in their training, since the “state of the art” changes rapidly. There are lots of clinician out there who believe they can diagnose Aspergers but many are far from competent. Also just getting a label is of only limited value, good clinicians will provide the full broad array of evaluations and document specific characteristic which your child might have (since every Apsergers child has a different combinations) and good practical implementable recommendations based on those.

You also need to educate yourself. My first read recommendation is Tony Attwoods “The Complete Guide to Aspergers” C/2007 available on Amazon for about $25 (order it now!!). He is the #1 clinician in this field and is world renowned (and the book is readable) Your knowledge is paramount in obtain the supports that your child will need.

I could go on but that is probably enough for one chunk, other than to say congratulations, you have a very special child, and while he will face challenges adapting to the Neurotypical social world he has amazing gifts that if supported and nurtured make him far more likely to make positive contributions to society than an average child.

Again welcome

 

[stumom]

Thank you, Bookworm, et al, I will be pursuing this with all the energy I have.

I don't want to creat an atmosphere of animosity at his school, because he has to "live there" but I do want them to know I am not just going to wait for them to fix things. I can get firm when I need to. I get the sense that the principal rolls her eyes at me in private, because she said on the phone to me, "Now, don't take this the wrong way, but Asperger's and autism are popular diagnoses right now, just like ADD and ADHD were a few years ago. Kindergarten is a new experience for children and their parents and we have seen hundreds of children go through it, and have a little more experience than you do." Umm...yes, but you do not have the experience with MY child that I do! I feel so patronized! As if I wanted to run out and get a label for my child to excuse him for hitting another child. I just want help understanding his experience of things so that I can find tools to help him cope with situations that trigger his "inappropriate" behavior, help him make friends, and to know how to best foster growth in the interests he has, such as machinery and music.

Thank you again, I am printing this advice out and will find the information to add to my file.

Bonnie

 

[stumom]

I just wanted to add...I just discovered a neighbor who has a 16 y.o. son with high functioning autism who gave me all sorts of great information, too! Between this board and my neighbor, I will be well armed monday when I go to pick my son up! I'll keep you all posted.

 

[stumom]

Here is the reply to my request for an evaluation of my son under IDEA:
******************************************
Dear Parent/Guardian,
This notice is to inform you regarding the school district's intent to propose or refuse to initiate an evaluation or change the identification and/or the educational placement of your child. The purpose of this action is to ensure the provision of a Free Appropriate Public Education (F.A.P.E.) to your child pusuant under CFR 34 300.503.

This notice includes a description and explanation regarding the district's proposal or refusal and a description of other options that have been considered.It also includes a description of information used as a basis for the district's proposal or refusal and any other factors that are relevant (interventions, modifications, supporting data, etc.) to the district's decision.

"Mark all that apply"
X - Identification-Request for initial evaluation to determine eligibility for special education

Description of the action that the school district proposes or refuses to take:

The district is not honoring the request for special education assessment for (my child's name)

Explanation of the action the school district proposes or refuses to take

The district has determined from teacher report and student records that (my child's name) has not exhausted the resources of the general education program. A Special Education assessment is therefore inappropriate at this time.

Description of the documentation used to make the decision (Mark all that apply, documentation available upon request)

x-review of student records
x-teacher reports

Description of additional factors relevant to the proposal or refusal if any:

California Education Code 56303. A pupil shall be referred for special education instruction and services only after the resources of the regular education program have been considered and, where appropriate, utilized.

Other options considered:

(child's) parent can request a Student Study Team at the school site.

Signed by the district's resource specialist.
****************************************
What do you think of this? I vascillate between feeling like they are all rolling their eyes at me and stalling and feeling angry that my kindergartener has been sent to the principal's office seven times since August 31, the first time being the first day of school. I don't even get reports any more, or phone calls to tell me what is happening, I hear it from my kid: Mrs. so and so sent me to the principal's office for playing in the water-then I hear a couple of days later from the principal (when I see her in the hall on pick up) that it was because he was told to stop 5 times, and when a teacher called him over, he ran away from them so was sent to the principal. (Sounds lame to me, as a way to handle a kindergartener!!) His self esteem is suffering, he is calling himself and others at home bad names all the time now.

Bonnie

 

[GraceLuvsWDW]

Bonnie, my dd6 was diagnosed this summer with Asperger's. I requested a FIE on my dd before she even started school and they tried to tell me they couldn't do one either. They have done the FIE and have concluded she is not eligible for Spcial Education services. Here are the things I would tell/ask you before you decide to "push this issue" with your district:

First of all, and most importantly, is for you to know that a medical diagnosis does not mean special education services are available to your son. I know this is CRAZY!!! (it's driving me mad) but that's the way the school works. IDEA and NCLB have made more of a push to have children that would have been in Sp Ed to be dealt with in Reg Ed before they are referred to Sp Ed. This includes RTI (Response to Intervention) where they intervene on the issues your son is having and show there is little response to that intervention which then warrants Sp Ed. Anyway, the key here is that even if an eval is done, it is not likely he will qualify unless there are severe impairments to his ability to learn. Our definition of severe is different than theirs, by the way. Also, this is the way it works here in TX, others may expand on other areas. I know lots of people who have kids with Sensory Processing Disorder (not a disorder in DSM) and they rceive Sp Ed Svc so I don't really understand the difference. But I can tell you even an advocate could not help me get an educational dx.

What kind of issues is your son having? They state they consulted with teachers, is he doing fairly ok in the classroom academically? By that I mean, is he failing the curriculum or showing lack of knowledge with the curriculum beyond all other students in his class?

See, with AS, these kids are in a catch 22. They are bright cognitively, and many times cognitively superior, and that leads the schools to ignore their deficits and differences. For instance, my dd has scored 90-99th % + in areas (spatial relations, mathmatical functions) and is 6-16th % in many other areas (coordination, pragmatic language, memory). Unfortunately, the district "averages" out these figures to say she doesn't need services. I know this is wrong, you know this is wrong, but unfortunately this is how it works.

My advice: pursue 504 modifictions in the short term. Keep an eye on his progress. Get as much outside (private) support for your son as possible!

Gotta run, will post more later!

Good luck!

 

[bookwormde]

The section of CA code that they reference is in conflict with federal IDEA law therefore is invalid. I have a meeting to go to now but I will pull the IDEA section and you need to file a due process complaint and probably ask for a federal interpretation for the state stature from FED DOE.

bookwormde

 

[stumom]

Thank you for the responses, I have to print them out so I can think about them more, and see what I can do.

One thing I really need to ask is what are "the resources of the regular education program" that we have not exhausted? Every time I see the school psychologist, on Mondays and Tuesdays, when I come to pick him up, I get lots of, "Oh, he's doing so well, he's really trying, he's resisting his impulses to strike out at other children, etc"

Today, though, I spied a little, and watched him on the play ground, where he played with the ball on a chain by himself, watching it go around and around, winding it up over and over, and when another kid came over to play, one that he actually likes, he pushed them away. Afterwards he went to another boy who often baits him, and they exchanged some words, then he moved closer to the boy, but the boy said something, and he walked away and got his friend that he had pushed away at the ball before, held him by the arms as he walked behind him, marched him over to the other boy and said something with a mad face, and the 3 boys stood back and regarded each other, the friend looking nervous, and the boy who baits him turned away to play with someone else. I didn't see any friendly playing at all.

He assumes everyone does things to him on purpose, has trouble understanding that everyone doesn't know what he is thinking or experiencing, and doesn't understand sarcasm or certain types of joking, taking people seriously most of the time. Not a lot of eye contact, fleeting when there is. We are working with him in a therapy program for social skills, and he had his 3rd day today, and it seems to be good, but I think she is operating as if he doesn't have asperger's. She said "we will see". He hasn't had an "official" diagnosis, but has been seen by someone (PsyD)who is quite familiar with ASDs and Aspergers who said she thinks he meets the threshold.

Back to my list of things to do...

 

[bookwormde]

I am back, sorry for the delay I had a (needs) letter in front of my state’s IDEA advisory panel and it was important that I be there in person.

Here is some information contractually developed by FED DOE to help schools and parents understand the evaluation process

http://www.nichcy.org/Laws/IDEA/Documents/Training_Curriculum/C-handouts.pdf

If you look on page 7c 300.301, you will see that the state/school/district has very little latitude in initiating the evaluation. Certainly the reasons they gave are not valid under the federal statute. There have been specific interpretations that the state may not delay evaluations where there is an indication that a disability may be indicated.

Here is also a training guide

http://www.nichcy.org/Laws/IDEA/Documents/Training_Curriculum/9-trainerguide.pdf

You will notice that the CA code they referenced only relates to instruction, not evaluations. This section is to ensure that all standard supports are being supplied to meet the needs of the child before special supports are considered (you will also note that these only need to be considered in the development of an IEP and do not need to be specifically implemented before the development of the IEP).

You received a procedural safeguards manual (if you lost it you may request another at any time) when you first requested an evaluation; it has the procedures and should have a “model” form for the due process complaint and request for due process hearing.

Fill in the top “personal” information, then in the nature section enter this:

“The school, district and state have failed to conduct an evaluation of my child as I requested on (date you requested the evaluation) as required under Part B 300.301 of IDEA. The school has specifically refused to conduct the evaluation. The reasons stated are not valid reasons under 300.301 not to conduct an evaluation. School, district and state policy and state code may not super cede the Federal regulatory requirements of IDEA. Specifically the section of CA code reference applies to the development of a IEP not the evaluation phase.

My child has clear indication of a disability (most likely Autism/Aspergers) including lack of appropriate social skills and Theory of mind skills (add additional ones you and the clinicians or you have noted such as typically EF differential including attending and processing differentials, anxiety based reactions and behaviors, any sensory issues to the extent that they exist).

Additionally was given information the “district does not do evaluations until the 2nd grade” which is also clearly a violation of 300.301 of IDEA.”

Get your clinical group to write a letter of their “observations” to date even if they cannot yet give a more formal evaluation.

Immediately set up a meeting (top commence within the week) with the districts resource specialist and if the can the districts director of special education. Let them know that you have a due process complaint prepared and are willing to review it with them before proceeding to file it.

In most cases they will meet with you, if not file it (in your safeguards manual there are specific places listed that is must be sent).

bookwormde

 

[stumom]

Thank you so much, I have a lot to do. I have called the district's resource specialist to ask: what resources is he supposed to be "exhausting" (because I'd love to be using them right now!), and to clarify that my letter was a request for an evaluation, not anything to do with an IEP. I then called the doctor who said he met the threshold for Asperger's to ask for a letter of some kind making statements of her observations when she did her "mini-evaluation" with him alone in her office. I watched him on the yard again today and he spent his time (at least the last ten minutes or so) lining up the lunch boxes against the back rest of the bench and knocking them down, setting them up, knocking them down.
*sigh*

Back to the stack of info! Thank you again for the direction!

 

[bookwormde]

We have all been where you are in some form so hang in there, and keep fighting for your child

bookwormde

 

[stumom]

Thank you, bookworm, I am in the middle of the Attwood book you recommended, and lent the teacher a copy of "Let Me Tell You About Asperger's" for kids, with a note describing my son's pieces of it, and she wrote a note back saying keep her informed and she was looking forward to reading the relevant and practical parts that I said I would condense for her in the Attwood book. (I am considering buying the school a copy for their teacher's lounge...it was under $15.00 on Amazon) I hate how this has changed my relaxed and friendly relationship with his teacher, she seems so on guard now. Too bad we can't just say, "Hey, my kid is having some needs, can we address them?" without having to create paper trails everywhere we go. I began documenting the first day of school, because the call from the principal was pretty intense, so I copied it word for word. She said she had never heard such screaming. He was terrified of her, said she had a "mad face". She said she yelled at him to get him to listen. He has reported that if he cries, she tells him to "knock it off". Not the way I raise him to speak to people, nor do I speak that way!!! At least his therapist at the social skills program agrees the principal is being inappropriate, so I have an ally. (Not to mention some other parents at the school) Thanks for your support!!
Bonnie

 

[GraceLuvsWDW]

The Attwood book will change your life and how you view your son! His perspective on the varied and intricate ways different kids are affected in different ways by AS is so insightful. If only US medical establishment would take a similar perspective and recognize the wide variations in the presentations of these kids/adults and the specific differences in the manifestations in girls vs boys it would go a long way in helping so many children! Too many supposed "Autism Specialists" look for the stereotypical presentation of zero eye contact, lack of shared joy, and repetitive speech among others to base their lack of diagnosis. Only those specializing in the diagnosis and the varied presentations are able to discern the differences. This is especially true with the higher IQ/higher functioning group who can learn deflection and coping mechanisms. I'm appalled at how these supposed "Autism Specialists" misread the intricate pattern of strengths and weaknesses. The Autism Specialist at our school actually called me to ask if we really had a tree that we watered with salt water everyday! Yikes, that woman needs to get a clue!

For me, the path of understanding AS, coming to believe in the diagnosis, and then the struggle to make others understand that my dd is not a "mean spirited", "emotionally unstable" or "rude" child has been very difficult. I hope that your journey down the path is easier!

Good Luck!

 

[melisandes]

I just wanted to wave hello at you. I am mom to 4 kiddos with two of them on the spectrum. My daughter has Aspergers. My son is still waiting for a firm diagnosis. There are often clubs for older high functioning ASD kids so be sure to keep your ears open for ones in your area. Also if you ever need someone who knows what you are going through feel free to write me on here. I understand what you are going through times two.

 

[stumom]

Thanks, I appreciate it. Right now I am steeped in information and opinions about what I should be doing. There is a plan, though, that I am following, and I have an advocate, a therapist and my husband coming to the SST meeting on November 17th. I just got the packet of paperwork from the ASD center and handed the teacher her part today. I figure he will be at this school for some time, so I want to do my best to show that I am working with them, while I bring all the resources I can possibly bring to support my theory.

I keep thinking, "No, the school is right, maybe he doesn't have asperger's, maybe it is only some sensory processing issues."

Then I watch him interact with a new kid at the park, and hear the mom's reaction when he slams into her toddler on the slide, despite my following close and watching him like a hawk-"what are you DOING?!" after I had just apologized to her for hovering and explaining that he doesn't always understand personal space and she had just said, "It's no big deal"

Stopping him to talk about it seemed like it had no effect except for him to say what he thought I expected, and then running off happily to play more. No remorse or seeming awareness of what just occurred. And then, other times, he seems like he might really "get" someone being hurt. I have heard him go to a crying kid and say, "Are you okay, that must have hurt."

And after a really long exhausting day, right after he ate dinner, he sat down and did ALL of his kindergarten homework, 10 pages, in a few minutes, for the whole week! (given on Friday, due on Wednesday) Last night he started learnign about division, and writing division sentences.

I really do appreciate the support, even if I am not here all the time. I feel like my life is consumed by this for the time being, and I have time for little else-my house is a mess!

 

[Piper]

Hang in there, baby. You are doing all you can right now. I am sending you a link to flylady.com via email. She will help with house issues in 15 minute chunks...that will help with any stress from that area.

 

[brergnat]

I'm not sure if you are aware of this, but here in California, a child diagnosed with ASPERGER SYNDROME (or PDD-NOS) is NOT automatically eligible for Special Education or other state funded aid. The child has to have a clinical AUTISM diagnosis.

I would stop using the word "Aspergers" immediately! Instead, tell the school that you suspect that your son has an AUTISM SPECTRUM DISORDER, and you want him evaluated for AUTISM. Tell your doctors the same. The truth is, Asperger's and Autism are very difficult to differentiate, even by trained clinicians.

Read this article...it is very interesting:
http://www.nytimes.com/2009/11/03/health/03asperger.html?_r=1&ref=health

Technically, at THIS point, the school is right here. They are NOT required to evaluate your son if you feel he has ASPERGERS, as they would not automatically offer special ed for that reason. However, if they do a full AUTISM evaluation, and he falls under school's criteria (which are actually different than the DSM-IV, to some extent), then he WILL be considered for either a switch to a special ed. class (probably at another school, depending on whether or not the school has a Specialized Academic Instruction class), or for some classroom interventions to help him where he is struggling, compared to a "typical" child. Be aware that the SCHOOL is only responsible for providing interventions/therapies for issues that occur DURING SCHOOL HOURS. Anything that occurs at home, out in public, etc, that does NOT occur at school, is essentially of NO CONCERN to the school district. If you feel that he needs therapy to address behavioral problems at HOME, that the teachers are NOT observing at school, that is where privately funded therapies come in. Again, in order for your insurance to cover it as a medical need, in CA, he has to be given an AUTISM diagnosis, and then insurance *may* cover some ABA therapy (which is the only "approved" therapy by the medical community).

Just from your posts so far, I'd be a BIT hesitant to pin him as Asperger's or Autistic. Your examples of his social interactions don't really correlate to how these kids typically behave with peers. Generally speaking, there is a LACK of association with peers, as if they don't exist. There is usually GREAT difficulty with making initial engagements/having back and forth conversation that is meaningful/and even having an INTEREST in something that another kid is doing. Your son seems to have some "autistic like characteristics", but a lot of kids do and it doesn't mean they are truly Autistic. You have to look at the WHOLE picture, and there have to be SIGNIFICANT social deficits (i.e. such that they interfere with the ability to have friends) as well as deficits in the area of pragmatic LANGUAGE use in addition to either stereotyped, repetetive behaviors and/or fixation on rituals/routines that do not serve a purpose.

I would hate to see you make enemies with the school at this point. Proceed with caution! AT THIS POINT, if you have been going off to them about how you think your son has ASPERGERS, you have sort of put yourself in a bad spot, ONLY BECAUSE in this state, unfortunately, an Asperger's diagnosis doesn't mean so much to the schools.

Good luck! I would seek out an evaluation with a DIFFERENT doctor (ask you pediatrician for a referral to a PEDIATRIC NEUROLOGIST). Go in there and tell the doctor you suspect AUTISM in your son, and let THEM decide, based on the clinical requirements for diagnosis. The true diagnosis cannot be had without some significant parental questionnaires, that run the gamut from things your son has been doing since BIRTH. It's about 250 questions worth of information from the PARENT, and much less about what the clinician observes in the child. If you have not filled out these types of questionnaires yet, take any "diagnosis" given to you by a doctor to be with a HUGE grain of salt.