What should I do for the next 6 months!?!

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JamieJ
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14 Dec 2009, 4:08 pm

Long story short: I am quite convinced that my 9 year old son has Asperger's and have made an appointment for a thorough assesment. There is a huge wait, so he cannot be seen until April 12 2010. What I want to know is, are we suppose to just flounder around with him until then? I feel as though we are going to have to just forefeit the entire school year, because without an IEP, the school can not or will not do anything, and without a diagnosis, we can't get an IEP. So what an I supposed to do until April!!??



Willard
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14 Dec 2009, 5:07 pm

Do you know how many children with AS have struggled through school systems with no acknowledgment of their disorder, no help whatsoever, even being treated as though they're nothing special and just have to sink or swim like everybody else?

Know how many parents of high-functioning autistic kids have spent lifetimes puzzling over why their odd child was so smart and yet rarely had any friends and often simply claimed they 'couldn't' do the simplest social things, like attend a party or dance, or hold a job for more than a year at a time?

Up until 1994, all of them.


How are you going to muddle through three or four months? OMG!! ! Probably as well as I muddled through my first 49 years. At least you have the luxury of knowing what you're (probably) dealing with...

Your child is a person...deal with him as you would a person. AS is a handicap, not a terminal illness.



trickie
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14 Dec 2009, 5:43 pm

Though Willard was a tad harsh he is correct besides without the whole story how can we advise you, why would you have to forfeit the school year I wasn't diagnosed until after I had successfully graduated high school without any help (though I do receive learning aids in university). Asperger's shouldn't impede your son's ability to perform in school unless he is being bullied which a diagnosis is sadly not going to stop.

Also why stress for 6 months when your son may not have AS all your stressing will do is stress him and make him feel out of place which will only worsen if he doesn't have AS because then he will be an outsider without an explanation.



DenvrDave
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14 Dec 2009, 5:56 pm

There are a lot of constructive things you can do that can possibly help in the short term but most certainly will be helpful in the long term, for example:

- Get to know your child better.
- Start keeping a journal of your observations regarding your child's behaviors and abilities.
- Spend time in the classroom as a "volunteer" observing your child with his/her peers, write down observations.
- Talk to the teacher and get his/her observations and suggestions, write these down.
- Talk to the principal and get his/her observations and suggestions, write these down.
- Talk to other school staff and get their observations/suggestions...seriously, even the lunch person may provide valuable insight you might not otherwise get.
- Read books on the diagnosis process.
- Find out about how your school district handles special education.
- Ask your child about his/her day, everyday, and ask about how they feel, and how they are doing, and are they turning in their work, are they getting picked on?

This is just a quick list I thought of off the top of my head. I'm sure there are plenty of other things you can be doing as well. Don't do nothing.



coreycamino
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14 Dec 2009, 6:00 pm

While I agree with the other posters, what accommodations are you hoping to have on his IEP? Obviously therapy services will not be offered through the school without a dx but there are accommodations the teacher could make in the classroom without an IEP if you talk to him or her, such as a visual schedule. I would speak to the teacher about providing the needed interventions that they can in the meantime.



Tahitiii
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14 Dec 2009, 7:43 pm

Somebody is scamming you.
When you first asked for an evaluation, someone should have given you a handbook.
They have legal deadlines for each step of the process.
I don't know where you live or what the rules are, but waiting until April is absurd.

Parental Rights in Special Education
http://www.plainfieldnjk12.org/Parents/PRISE.shtm

If you can't find such information online, go tomorrow and ask for a special needs parents' handbook or something comparable. They are required by law to give it to you.

Edit

That link wasn't what I expected. This one is better.
http://www.nj.gov/education/specialed/f ... /prise.pdf

But it's still not what I remembered.
It should have more specific time limits.

Short of calling a lawyer, is there a way to get someone to be your advocate, or at least give you advice and encouragement?



jat
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14 Dec 2009, 11:08 pm

JaimeJ,

You haven't told us where you live, so we aren't sure what we can tell you, with certainty, about what your rights are. If you live in the US, you don't need a diagnosis in order to receive assistance from the school, but you are not going to get an IEP the second you request one, whether or not you have a diagnosis. If your son has Asperger's, that's only a teeny part of the picture, from a school perspective. You need an evaluation that assesses what his educational needs are - how does the Asperger's (if he has Asperger's) impact his education? Each child is different, and not every child with Asperger's will need the same kinds of supports.

You can request an evaluation through the school because of any issues you see that are impacting your son's education. There are timelines within which the school is obligated to complete an evaluation and determine whether your son is a child with a disability requiring an IEP. All these rules are laid out in the IDEA. You can also find lot of information about your legal rights at Wrightslaw. If you choose to wait until you have your son evaluated privately, you will still have to wait to have the school complete its evaluation, and your IEP meeting will probably not take place until the end of the year, or possibly not until the fall, unless you request the evaluation well before the April evaluation that you have scheduled. The school has 60 days to complete the evaluation from the time that the parent signs the permission to evaluate, and the IEP meeting can be 30 days after that (if I recall correctly). And summer days don't count for some of the timelines.

In the meanwhile, document the issues that you see, so that you will be better prepared to discuss your concerns when you meet with the evaluator, and when you have an IEP meeting; when issues come up, keep in touch with your son's teacher and try to work out informal means of accommodating his needs - and keep track of all informal accommodations so that you can incorporate them into any future IEP.



Tracker
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15 Dec 2009, 1:40 am

Hello there

First off, welcome to the forums.

Secondly, what your doing doesn't quiet seem consistent with standard practice in the US. So, either you arent in the US, or your leaving out pieces of information, or your going about things wrong. As others have said, once you ask for an assessment, the school is obligated to provide one within a certain period of time (less then 6 months). Also, even if you do get a private (not done by the school) assessment, the school can chose to ignore it (they shouldn't, but they sometimes do). So, it has to be something done by and for the school in a certain time period. You may want to get in touch with somebody to verify that your getting things going along the right path.

Thirdly (and perhaps most importantly), you have to realize that getting an official diagnosis really isn't going to change anything. Your son will be the same child both before and after the assessment. So, it isn't as though you need to wait until then to make some changes that may be beneficial. If you want to stick around this forum, read some other posts, and learn some information that you find helpful then feel free to do so. You dont need to wait for an official diagnosis for your son to do that.

Furthermore, if you are having specific problems, or have certain questions, feel free to post them here, and perhaps we might have some helpful information. From your post, it seems as though your son is struggling, or something in some way is going wrong. If you were to provide more information, we might be able to provide you some more help. This forum happens to be a very good (and free) source of information and assistance.



annotated_alice
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15 Dec 2009, 1:53 pm

Hi JamieJ, I can understand your frustration. We were told we would have to wait 6 months for an assessment for our sons too (after we finally got the ball rolling in the first place). We also didn't feel that this was acceptable. We ended up paying to have the assessment done privately (rather than through the school) and got an appointment much, much sooner. We are in Canada, the process seems to vary from country to country, and school zone to school zone. I would talk to your school's resource dept. and your own pediatrician about ways around the long wait.

We did end up with a bit of a wait, and then the assessment itself was done over 10 weeks, and then we waited for the final report and diagnosis. Once we finally gave the school the diagnosis there were more waits for meetings and various services to get involved. I would say that it took a year to get everything in place and everyone fully on board, and some things we are still working on. I guess, my point is that, yes, the AS dx is a key that will unlock certain services, get an IEP etc., BUT the ongoing process of helping and advocating for your child with challenges can begin right away and won't end.

I really like the suggestions about observing your child and keeping notes. This will help for the assessment and IEP. You could also do your own reading on AS and parenting kids with challenges, and begin implementing things to help at home. If the school and teachers are cooperative you can also take your observations and suggestions to them and ask them to make changes now, based on your child's needs, rather than waiting for a dx. I know that a lot of schools in our area are moving to this approach of responding to a child's particular needs in the classroom, with or without dxs. You could also research the services available for kids on the spectrum in your area, so that if and when the dx comes in, you will know where to go and what to ask for.

Good luck, and welcome to WP. :)



DW_a_mom
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16 Dec 2009, 3:02 pm

It would help to know which issues you are most concerned about.

Otherwise, if you think there is a strong possibility your son is AS, you can read and research and act on the assumption he is, and see how that works. Watch for sensory issues and mitigate the triggers in his environment; work out private accomodations with teachers to the extent most necessary; figure out what his stims are that he needs for self-calming and/or to concentrate, and give him free reign on those. Having a diagnosis isn't going to magically change anything other than provide information and guidance, and that you can start on your own.

In the past I've written some lengthy posts on some of the most important things to understand about AS children, with some ideas on how to handle them. One of these days I'll copy all that into a blog but, for now, I will say that if you search this forum for any of the key areas I mentioned above you should find lots of good information.

I will also list out some of the things that were in my son's IEP when he was 9, in case you have a teacher willing to implement some of them on her own:

1. Permission to dictate school work instead of writing it himself - not unlimited, because he did need to practice writing, but recognizing that writing was physically painful and overwhelming for him, so work of any length was much better dicated or recorded into a tape machine. This was because my son has a strong co-morbid handicap in his hands.

2. Permission to cut down homework assignments, literally black marking off parts of it, to help my son feel less overwhelmed and recognizing that doing the work physically takes him longer because of a slow processing speed (he is quite intelligent, but he moves like a 33rpm record in a 45 rpm world).

3. Seating/desk placement that allows him to wiggle and wobble and move and chew as needed with the least disruption to other children as possible.

4. Copies of anything on the board handed to him because he had trouble copying from the board.

5. Free sensory breaks - he had permission to escape into the antiroom without questions or request, any time he felt too much stress building up. This did a lot to prevent meltdowns.

In addition to the above he received OT and speech services. I realize those can't fall into place without a real IEP and they were helpful, but you'll get a lot of mileage out of the sorts of accomodations we listed above, and a sensible teacher won't have to wait for a piece of paper to put them in place.

Good luck.


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bookwormde
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20 Dec 2009, 12:50 pm

It is important to know that you do not need to have a diagnosis to get an educatinal classification (although it can make it easier in "uniformed schools). from the time you request an educatinal evaluation till the IEP meeitng to review new needs is typically linited to 60 days (although soem states are a little longer).

Also the most important thing you can do is to educate yourself, I allways recomentd as a first read Tony Attwoods' The complete guide to Aspergers C/2007 availabel on Amazon for about $17.

bookwormde



musicislife
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23 Dec 2009, 3:48 pm

Willard wrote:
Your child is a person...deal with him as you would a person. AS is a handicap, not a terminal illness.


sorry Willard, i have to disagree with you on your "AS is a handicap" comment. AS may be classified as a handicap, but it is only a handicap if you let it be.

anyway, i'm so glad that you're having your son tested this early. i didn't get my diagnosis until june '08, when i was 16, closing in on 17. as for what you should do, keep up checking out this site and reading posts. read up on AS in general, and go over what kinds of adaptions you, or your son, might want on his IEP.

good luck!!


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Vivienne
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23 Dec 2009, 11:42 pm

I'm in the same boat, I'm sure my son (7 1/2) has Aspergers Syndrome, and I had brought it up with his pediatrician seven months ago. We're also waiting until April for an appointment with a child specialist.

I was told that waiting a year is FAST for our health care system.

Alright, so it takes time. Having Asperger's isn't an emergency. It's not cancer. Accept that it will take some time for him to have a decent education plan created.

What to do in the meantime? I'm reading all I can on the subject. I'm using what I know to try and understand my son and be patient where I used to be angry. I'm speaking to him differently - we're both kind of 'feeling each other out" on the communication thing. He's always tried to understand what I'm saying, but now I'm really LISTENING to what he's saying as well.

School is hard, but I know that in the end, we will find a way to teach him so that when he's an adult he'll be able to read and write and produce work. I'm also trying to establish a support network for him and for me. Social support for him, emotional support for me.

We'll enjoy the holidays and I'll explain to him what I can about managing school. And I'll love him.
So that's what you can do. Love is the most important part, and that won't change with a Dr.'s appointment.