New intro with IEP ?
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| Tue, 05-24-2005 - 10:06am |
Hi all. I'm Chrystee, mom to Sam (almost 6) and Harrison (9 weeks.)
Sam has just been dx'd with AS. He was previously dx'd with SID and has a 504 plan at school to accomodate his needs in his mainstream classroom.
I first noticed something was up when Sam was 18 months old. He liked to target a particular girl at playgroup and would walk across the room to pull her hair for no apparent reason. It was highly embarrassing and we could never figure out what was going on. He started to bite me every time he nursed soon after. He smiled when he did it despite me trying not to show any emotion or response.....he did this for a week and I cut him off cold turkey. I thought he'd give me a fight, but he never noticed; not the way I wanted things to go.
He's very affectionate and extroverted with an incredible sense of humor. I've had AS in the back of my mind now for several years, but everyone kept telling us he was fine, he'd grow out of it, use a behavior chart....etc. Our Ped. is great and recently confessed that she's had AS in mind as well. We decided to get a private eval recently because he was having some serious nighttime anxiety. He'd lay awake for hours and still be scared with the light on and one of us in the room. He was so anxious that he saw things that weren't there, usually bugs. Finally the dx of AS explains all the challenges we have faced parenting him.
His K teacher is great. She implements the 504 plan without Sam even knowing it. She has a great sense of humor and plays alot one on one with him. He did struggle at the beginning of the year with recess but has made a few friends and has learned to stick with them. Still he struggles with it and continues to abhor gym class as well. His teacher is worried about how he will do in 1st grade but wants to pass him on so he will get Reading recovery which apparently they do not provide in K. He does struggle with reading/writing quite a bit and is very easily frustrated by it. He has yet to have a meltdown over it at school but he has at home and I fear the increased demand on him in 1st grade and his difficulty with this is a bad recipe without an IEP to specifically address this. The 504 has worked OK for the sensory stuff and I even think that his social needs could be addressed in a 504, but the learning difficulties warrant an IEP though we have no specific dx for his struggles.
I have not notified his teacher of the dx yet, but have called the Special Needs Dept requesting an IEP. I was told that they need to review the report by the Dr. that made the dx. They may request their own evals after seeing the report. She also stated that an IEP is only made for kids whose disabilities interact with their learning......ugh. Which is what I've been hearing for several years now.
We are in the process of getting a private neuropsych eval to figure out why he is struggling so much with reading. I fear that the school dept will have to see an outburst before they do something about it despite me trying prevent that from happening in the first place.
Other teachers have apparently commented to Sam's teacher about Sam. He can be quite goofy in class and I think it's rather obvious that something is up, though noone knows what it is. We've been saying, "oh that's Sam." But now I know it's much more than that and there's something we can do to help him.
My questions.....how do I ensure that I get an IEP for him? They may not give me a fight, but I feel like the Special needs coordinator for our school is warning me that that I may not get what I want unless I do. This makes me worried. I already feel defensive and ready to go at it! LOL I've tried several times to read the Wright's Law website, but I don't even know where to start. And what exactly to I put in the IEP? He is very high functioning, so much so that he comes off as just "quirky." He has mild symptoms of all the criterion for the diagnosis so I'm confident in the dx, I'm just not sure how to make everyone else confident in it so he gets the help he needs. And I guess there's no way to make someone who's "different" not feel so different, or is there?
Thanks in advance!
Chrystee


Chrystee,
I think that with the very high functioning kids, it is hard to get them services in the public school system. I have friends who are losing services because their kids have moved beyond the 30th percentile in language or because they are deemed discipline problems. I think a good rule of thumb would be to go in with a plan for what you want your son to receive. If he is very high functioning, you could ask for social skills training with the arguement that this would make him an easier to manage student in the future. If your DS is also likely to be gifted intellectually, a future plan may be to ask for gifted services. Kids with high IQ's often become behavior problems when they are not challenged in school.
It is good that he already has a 504. It is also a good sign that the school has been willing to accommodate him for his DSI. Many schools do not recognize DSI as a diagnosis and won't accommodate for it. My feeling is that if you go in with specific ideas about what your son needs, you are more likely to come out of an IEP meeting with some good results. Talk to his teacher to see if there is anything that she thinks could be improved on to get him a good situation going into 1st grade.
Good luck.
Suzi
hrm.. its sort of tricky based on how your state define the criteria for an IEP. Where we live, they have a diagnosis of educational autism which does not require nor indicates a medical diagnsois of any form of autism (subsequently you can also have a medical diagnosis of autism and not fall within the educational autism diagnosis under the IEP it depends on the behaviors and such exhibited at school). My son has not been medically diagnosed as anything but delayed still and at this point its unknown if they ever will diagnosis him (the closest thing was hyperlexia, but he reads for comprehension so it was thrown out)
The definition of how it affects their learning is far far broader then the school is letting on to you. For example, my son's IEP goals are for him to be able to express himself when frustrated appropriately. He currently, when upset or frustrated, will start to yell and usually cry. The yelling may simply be yelling the word no over and over or stop. he is only occassinally able to state the 1st and appropriately what is bothering him (EX: So and So took the toy I wanted). other goals revovle around his ability to wait his turn and to transition from activity to activity. None of these are direct impediments to his ability to learn, but rather they are side issues that make learning harder for him AND his reactions to things that make learning harder for the children around him. The language in our IEP qualifications states over and over if these are problems that impede the child's ability to learn or the ability of those around the child (ie: classmates) and your right, it may just take a meltdown at school for them to understand.
As for requesting an IEP. Most requests for evaluations have to be completed within 45-60 days by law. Thus if you request it now, the school will not be able to complete the process in the necessary time frame, thus you will probably see no action taken on it until the next school year. We have run into the same problem as my ds's new school he is going to for Kindergarten wants to do an OT evualtion to see if he needs a sensory diet or if OT would be more helpful in dealing with his outbursts due to frustration. So we are waiting until Sept/Oct to do the OT eval to in order to stay within the legal guidelines but also to see how he reacts to Kindergarten and a much bigger class and a bit more stress.
It will be helpful if you can point to specific things that are occuring in the classroom that is problmatic. For example, if when he is getting frustrated with reading/writing he begins to withdrawl or gets more antsy, even putting down the book and refusing to continue to try (my son also gets easily frustrated when overwhelmed, he can easily read but has difficulties when faced with a whole page of words so we have to break it down word by word by either using a finger to point to words or by hiding the other lines with a piece of paper)
HTH
Thanks, that's really helpful and explains exactly what I need to put in his IEP.
I guess I should tell his teacher about the dx and my intentions of getting an IEP. Maybe put some of the Dr's recommendations in there too, see if she has any ideas for next year. We still have a month to go, but you're right, there's probably not enough time. She supposedly trying to hand pick his 1st grade teacher.....crossing my fingers.
Thanks!
Chrystee