What kind of help do we need and where do we get it?

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Brightness
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06 Jun 2005, 2:05 am

My family's story is probably familiar to readers of this forum. My husband and myself have had difficulties with our daughter's behavior since her toddlerhood. At first it seemed just usual toddler stubborness, but people with more experience (she is our only child), such as our parents and her daycare provider said she was unusually insistent and unusually bothered by changes in her environment or routine.

From there on she has displayed a continuous pattern of strong-willed or defiant behavior with a propensity towards power struggles. She has always had difficulties with transitioning from one activity to the next, adjusting to a routine, but even moreso when routine was changed. She often insists on some precise details in the way certain activities are done, or the order of activities, etc and lacks the flexibility to adjust to a deviation from her very detailed expectations.

On the positive side, she is a very bright girl who learned to read early and reads above age level, has an excellent grasp of abstract mathematical ideas and a very musical ear. She draws very expressively, though her technique seems a bit behind that of her peers.

Upon entering public school for kindergarten her refusal to conform with rules, and particularly difficulty to transition from one activity to the next on schedule brought about much friction with the school. She was placed on an IEP for 'developmental delay' that was focused on getting her adjusted to school routine (she started with a very short school day and earned more time by being tantrum-free for a few consecutive days, also consequences were placed for disruptive or defiant behavior in class). The program was only partially successful. My daughter understood the expectations, but was only able to follow them when she was in a relatively calm mood. If she became frustrated or angry all was forgotten.

Now in first grade she had a great time in the fall: she did most of the expected work, followed the teacher's instructions most days. However, any day that deviated from the usual routine (for example when they had assemblies or the Halloween party) brought defiant behavior. During winter things really went bad - for whole weeks she would refuse to do her work. Frequently she had to be removed from class for disruptive behavior. At that point we asked for a referral for some professional help. While we were waiting for our appointment, the school district held the testing for its highly capable program - and she was found to be elligible. (She enjoyed the intellectual stimulation of the testing very much - she was talking about test questions for many days later.)

Finally she was seen by a psychologist, who found that she meets many of the criteria for Asperger's Syndrome. She scored at the top end of the 'possibly' range. From my reading on AS, I agree that she fits there, however the diagnosis isn't conclusive enough for the school district. Since she already has an IEP she will have some accomodations, but apparently it will not be easy to get accomodations that address needs from an AS perspective, and it will probably be hard to get help from the district outside class.

As she will be entering the highly capable program she will be moving to a different school next year. (It is a self-contained program.) She already knows that her continued participation requires doing the required work. She also agrees that a more challenging schooling is a good idea (she already gets more challenging reading material and spelling words in her current class), but from experience I don't expect this understanding on her part to be enough for her to follow through. She needs help to be more successful, to be able to deal with her emotions and let her intellect express itself fully.

So now I am trying to get information and ideas for the following:
- accomodations that can be implemented in class
- help she can get at school outside class (probably via the resource room)
- help we need to get for her privately, outside school

I have a whole list of things that can be done in class, or need attention in class - have the schedule for the day displayed in a visible manner, seating where she can focus best as well as alternate, more secluded seating for when she needs to escape (for example if the noise level gets too much for her), preparation for changes in routine, possibly assigning her an older buddy to help with adjustment (the class she will be entering is a mixed-age 2nd-3rd grade, so there will be more veteran students).

I am less knowledgeable about what other help she needs and what we can do to help her get it. She was supposed to be getting some pull-out time to work on behavior-related issues with means such as social stories, but I am not sure to what degree this has been implemented so far. Now that I have read that this method is recommended for AS I will be more insistent on it - though I do not know to what degree AS will be taken in account in working with my daughter because of the inconclusive diagnosis. What else should be there? I understand the most important intervention would be social skills training in a group setting? What can be done for her sensitivity to noise? Apparently this has been one of her trigers. The school offers some occupational therapy, but she probably won't be elligible, as she doesn't have problems with handwriting, though her coloring and drawing aren't at age level. She probably won't be elligible for speech&language therapy either, though she could use help to learn not to be so overly-literal in her interpretation of language and in conforming to social rules of conversation and language usage.

I will appreciate very much any help I can get here. Sorry for the length of this post.



Sean
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06 Jun 2005, 2:24 am

Where are you at? I'm pretty sure that the school's claims that your dughter is inelligabe are BS. Legal action is someting that administrators fear would likely give you thne leverage you need, especailly if you have a reccommendation for the programs from your proffesional.



ljbouchard
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06 Jun 2005, 6:38 am

Brightness,

It would help to know where you are at so that people here can assist your.

If you are in the United States, I would first suggest that you aquaint yourself with IDEA (which is the law in which IEPs are based on). The district is required to provide accomidations needed for the child to succeed in their education. End of question. Enforcing the law may be a different story however and may require a lawyer or advocate.

The 2nd thing I would suggest is to either find a local AS Parents group or contact the local Autism Society of America group. The persons in either group should be able to assist you in finding assistance outside of school.


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Brightness
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06 Jun 2005, 8:58 am

We are in Washington state. On eligibility - yes, she will be eligible for some services. She currently falls under 'developmental delay' and will likely fall under 'emotionally/behaviorally disabled'. The problem would be figuring out which services would be most relevant, as well as eligibility for specific services.

For example, I am told that for help with speech/language she needs to fall within the lower 8% for either receptive or expressive language. Like many aspies, my daughter's language issues are very subtle - literal interpretation of others' words and expressing herself in an overly formal manner - I don't even know if language services at schools here address such things. However, I think I can already see how this is beginning to influence her school work, in that she often won't do beyond the exact literal definition of the assignment at hand.

Do schools generally provide services in the area of social skill training to students in mainstream classes? What about help with sensory integration and related matters? Are these services effective? Or do we need to seek that help on our own?



ljbouchard
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06 Jun 2005, 9:33 am

I would be very careful with the EBD designation. It has been found that putting AS children with genuine EBD children is like putting the perfect victims with the perfect victimizers. Make sure the school district understands that concept or there may be alot of problems down the road.

I would suggest that you try to find another parent of an AS child in your district. If there are none, you should look at the surrounding districts in your area and see what they offer and do not offer. Realize though that persons with AS are as varied as humans in general. What is working for one child may or may not work for your daughter.

I would also suggest that you try to obtain an assessment that is outside of the district to back their assessment up. An assessment like that would me more conclusive.

I wish you luck, you will certainly need it.


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BeeBee
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06 Jun 2005, 9:39 am

Louis' advice is dead on.

Once your daughter has an IEP ***ALL*** areas of disability must be addressed per IDEA. Unfortunitly it sounds like you are in a school district that likes boxes...ie this disability gets this service and that disability gets that service. It is possible to get them thinking outside the box but its difficult.

Please, please, please stay away from the EBD lable for a while. Putting an AS child in an EBD classroom causes more problems then it sovles in most situations. The school may tell you they can't offer this service or that service unless you agree to the EBD label--WRONG! I tell you that as a mother with one child EBD and one AS. I've accepted wrong labels to get services before but EBD is one you want to stay away from until you learn *exactly* what that means to your school.

Did the school do a FBA and develope a BIP before they did the IEP? If not, ask for a full Functional Behavioral Assessment. The school then looks for triggers and developes a Behavior Intervention Plan to address the triggers.

Occupational Therapy is broader than writing. My son is getting OT to work on the noise sensativity. But, as you have found out, the school usually has some very low cut-off point for service. We have gone to an outside therapist for both OT and speech.

I suggest you contact your Parent Training and Information Center, especially if you are moving towards EBD. Each state is required to have at least one federally funded PTI. Some PTIs do ouutside fundrasing so that they can be very full service. Others do not and offer minable services. In any case, they should be able to direct you to the WA laws you will be working with. Your PTIs are:

Washington (CPRC)
Parent to Parent Power
1118 S 142nd St., Suite B
Tacoma, WA 98444
253-531-2022
253-538-1126 FAX
E-mail: [email protected]
Website: www.p2ppower.org
Serves: Asian families in Western WA including Canadian Border.

Washington (CPRC)
Rural Outreach
805 Southwest Alcora
Pullman, WA 99163
509-595-5440
E-mail: [email protected]

Washington
Washington State Parent Information and Training Center
6316 South 12th St., Suite B
Tacoma, WA 98465-1900
253-565-2266 (Voice & TDD)
253-566-8052 FAX
1-800-572-7368 in WA
E-mail: [email protected]
Website: www.washingtonpave.org


The other thing I would recomend is visiting the wrightslaw.com site. I strongly recommend their book "From Emotions to Advacacy: Your special education journal" (Or something like that) It a "first" book on special education going over federal law, tests and how to read test results, how to write letters to the school and proformas of common letters, and how to set up your file. It doesn't go over specific ideas for specific disabilites but is still a good starter book.

Welcome, and good luck!

BeeBee



Jetson
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06 Jun 2005, 10:43 am

Brightness wrote:
We are in Washington state.

If you PM me with your ZIP code I know someone who may be able to give you some advice.


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Sarcastic_Name
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06 Jun 2005, 3:08 pm

Brightness wrote:
The school offers some occupational therapy, but she probably won't be elligible, as she doesn't have problems with handwriting, though her coloring and drawing aren't at age level.


Coloring and drawing? Not to sound dumb, but you can't be refering to something like not being able to color in the lines and drawing stick figures. I'm all for the arts, but schools shouldn't expect everyone to be able to draw perfectly. I still do stick figures, and I'm 16. Hopefully I misread the statement because expecting kids to be able to color in the lines seems a bit outlandish to me. I still have trouble.


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Brightness
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06 Jun 2005, 8:31 pm

Thank you all for the helpful responses.

Regarding the eligibility category: I understand the problematic situation of placing a child with AS with children with emotional disabilities, however, I suppose this is only relevant for a child who is in a self-contained special-education program? Is it also a problem with children who are mainstreamed?

My daughter will be enrolled in the district's Highly Capable program (elsewhere known as Gifted and Talented). Intellectually she belongs there, but she needs accomodations to succeed there over the long term. I do hope she makes it there, because I think the intellectual stimulation will do her good. Also, I am afraid that in the regular class she'll develop the attitude that school is supposed to be easy, and once it won't be that easy anymore she might just get frustrated. I think the HC class might be better socially as well, as it is likely to attract geeky NT children, among whom my daughter is likely to feel more at home.

If the HC program doesn't work for her, she will be placed back in her current school, in a regular mainstream class. Only if that doesn't work either would placement in separate special education class be considered. Yes, I know things can go bad quickly so we do need to be prepared. Fortunately her classification as developmentally delayed only expires in the fall of 2006, so we have some time before we *have* to update her classification, though naturally things are likely to go more smoothly if we have an accurate designation sooner.

It seems the closest category under IDEA is autism? Or possibly 'other health impairments'? (I already know that 'specific learning disabilities' isn't relevant at the moment, but might become so if her needs are not addressed properly and her learning starts getting seriously held back.) I guess we will need some more work do get a more conclusive diagnosis, so she is classified as accurately as possible.

BeeBee, I am not sure about all that was done before the first version of my daughter's IEP was developed, as it was all during the first few weeks of kindergarten, but there was a *lot* of testing and interviewing. The IEP includes a Behavior Intervention Plan, which has been updated at the beginning of this year. I think it needs updating again for next year. We expect to have an IEP meeting scheduled soon.

Thanks for the links, I'll try them out.

I have found a support group - not in my town, nor in my school district, but still something. I also have an email address of a parent of a child with AS from my district.

Sarcastic_Name, her teacher has started marking her work down because it is so untidy. I don't know if it is a time management problem (untidiness because she is in a hurry), problem with getting started with the work which results in her not having enough time or just frustration with the nature of the work. But it might be a coordination issue as well. Maybe I should get her involved in some crafts over the summer to develop skills.

Again, thanks for the information and support.



Brightness
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09 Jun 2005, 9:10 am

Attended support group meeting last night. When I came home I found that My daughter and my husband had had some great time together (which doesn't happen often enough). My daughter's first words to me: "Hi Mommy! Did you have a good time at your meeting?" She can be so prescious. Anyway, I now have tons of local contacts. I'll see what we can do with the information.

There's an IEP meeting scheduled for the week after next. I'm doing lots of homework in preparation.



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09 Jun 2005, 9:45 am

I'm so glad your daughter and husband had a great time! How wonderful!

How did the meeting go? Did you feel it was worthwhile?

I wish our distrist did IEPs during summer! Today is the last day of school and everyone is scrambling about because there is a disagreement on D's IEP. I have no idea how we are going to resolve it over the phone! I could force the issue and the school would have to call a summer meeting but I'd like to avoid that if possilbe. One picks one's battles.

I've found that the mainstream teachers here look at an EBD student and think "She doesn't want to, I need to lay down the law or I'll lose her." whereas with an autism student it more along the lines of "He can't so I need to find a way to get around this problem."

The flip side is that the teachers don't make any assumptions about the intelligent levels of EBDer and they do about ASDer.

***I*** need a summer break from this as much as my children do! :lol:

BeeBee



Brightness
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09 Jun 2005, 12:08 pm

Well, it isn't really a summer IEP meeting, as the school year only ends on the 24th here.

About the meeting - the format includes some sharing by the family members and a guest speaker. This time it was a SLP that practices in my area. So I got some idea what S/L therapy was about. Just found that my insurance has this particular therapist listed (though I still don't know what exactly would be covered). It's good to know where to start looking.



Brightness
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09 Sep 2005, 2:59 am

I'd like to give an update on my daughter's progress:

Social interactions during the summer: Whenever we were out in parks, playgrounds etc she had reasonably successful interactions with the kids there, joining games etc. However, she refused to invite any of her classmates over, didn't want to celebrate her birthday with classmates (and wasn't invited by anyone). OTOH we had lengthy visits of family members - my husband's family for 2 weeks in the beginning of summer and mine for some 3 weeks later on. This included spending time 3 of her cousins. Over all, I think it was a good experience, and she liked being with people besides just us (her parents).

Social skills: We got Carol Gray's 'The New Social Stories Book' which was a huge success. She enjoys reading it to herself and working the situations out. We found some more books in the same vein at garage sales - some intended for preschoolers about how to join a game etc - she liked them because that's more or less where her social skills are. We have recently found a social skills group with girls her age. She has so far attended 2 meetings and it looks good. On 'Back to School Night' a girl asked her for her name - and not only did she answer, but she also asked for the other girl's name. That's progress.

Discipline and dealing with behavior at home: We read 'The Explosive Child' and are trying to follow the strategies it describes. There has been significant improvement in cooperation within the family and a decrease in adverary interactions. I think this has improved everyone's stress levels. But even without the book, just understanding what her dificulties are coming from has helped a lot.

Motor skills: We tried an assortment of crafts - nothing really grabbed her, but at least she knows what they are about. Practiced some inline skating. She decided it was time for her to try to learn to ride her bike without training wheels. She's trying, but it looks like she'll need a lot of practice till she gets the hang of it.

Academics: As I mentioned in my initial post, my daughter was accepted to the Highly Capable program in our school district. All incoming second graders were sent a packet of work for the summer, which included a book report (her first ever) and several pages of multiplication problems. It wasn't easy for her to start, it seemed like an overwhelming amount of work, but eventually she manged to do it all, and was rather proud with herself.

Starting new school: The new school year started yesterday. So far she is very motivated. Gets up early, and though she likes taking her time, she gets ready for school pretty much by herself, with no arguments. She is happy at the end of the day and doesn't argue about bedtime (another achievement!!)

Her new school, in addition to a regular elementary program and the district's Highly Capable program also houses the district's program for developmentally delayed preschoolers (ages 3-5). This means there are many on staff with special ed experience. I have met with the relevant staff, and as opposed to the staff in previous school, they seem a lot more accepting of the Asperger's diagnosis. Current accommodations include a secluded spot in class where she can go to calm down or complete work if she feels overwhelmed or distracted at her regular desk and help with finding strategies to address frustration - by class teacher and resource room teacher. So far the arrangement seems to be working.

What I am not sure about is what can be done to address sensory issues.

Hoping for a successful school year - for everyone on this board.