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IEP update and a question for you all

post #1 of 9
Thread Starter 
We had yet another IEP meeting for Connor (that makes, um, 3 official IEP meetings, plus the MFE, ETR, and two "informal" meetings since March ) We had several topics to discuss, but before I get into the details, here's my question:

Can I ask that a member of the team be replaced by someone else? I am finding that I really dislike the audiologist that our special education regional center has assigned to Connor, I'll go into details below, but I know there are other audiologists at the regional center, can I ask that we get a new one assigned to his IEP team? And if so, how do I go about doing that??

Here's how the meeting went:

1. He had a physical therapy eval a few weeks ago, and I got the report from that. He does qualify for physical therapy, although just barely. He's always been just on the cusp in gross motor skills, he will be slightly behind, qualify for therapy, then have a large jump and not qualify for a while, then he stagnates until he qualifies again, then a jump, etc. He was in and out of PT when he was in early intervention, and now he qualifies again. He showed a mild delay in locomotor skills, and noted decreased tone in his trunk and extremities. So when school starts again in the fall he'll get 75 minutes a month of PT at school.

2. I had intended on discussing the independent assessment that Ohio School for the Deaf conducted, but it seems that most members of the team had not read the stinking report yet!!! I received the report on May 24th, and I faxed a copy to the school psychologist on May 25th (although she should have received her own mailed copy). When I requested this IEP meeting, I gave a list of topics I wanted to discuss, and this report was on my list. The school chose the time and day of the meeting, so silly me thought they'd have read the report. Guess not. The team agreed to read the report and consider the recommendations listed on the report and be ready to discuss it when the team reconvenes in August before the next school year. I said that I expect them to come prepared with a list of possible responses to the recommendations so we can all discuss which route to go with each one. We'll see how that goes.

3. ESY...Connor did not qualify for ESY. I was somewhat surprised that he didn't, and kind of irked that basically the reason he doesn't qualify is because they know that he's in private speech therapy, so they don't think that he's going to regress much over the summer. So basically since we are paying our own money to have him in private therapy, the school is now off the hook for providing him ESY services. What a convenient loop hole for them. It's not a big deal, I'm not going to push it, but the irony of it rubs me wrong.

4. So now the part that precipitated my question above. The audiologist was there with her report from her review of his records and her observation of him in the classroom. The gist of her report is that he doesn't meet the state definition of hearing impaired, which is true, but I'm fighting that at a state level because the state definition is more restrictive than IDEA's definition. That's a whole 'nother post. That part I'm fine with. But what I'm so upset about is she repeatedly was questioning our choice of using ASL with Connor. She also was questioning our involvement with the Deaf Community, at one point saying (this is an exact quote): "Connor is NOT deaf, you are doing him a disservice by calling him that and by associating with the culture so much." I said "he may not be medically deaf, but he is Deaf (cultural label) in that he relies on a visual communication for his expressive communication." She kept saying that his speech problems weren't related to his hearing (I agree that they aren't *fully* related to his hearing, but they are partially) but I kept saying "it doesn't matter WHY he uses ASL, only that the fact that he uses it means that he associates with the Deaf Community." She has an obvious bias against the Deaf Community and culture. She said numerous times "he has normal or near-normal auditory input, he's not DEAF" and I said "many deaf people wear aids and have near-normal auditory input, but they are still Deaf" [capital D means the culture label, lower case d means the medical label] I don't know what her block is, maybe it's a generational thing (she's in her 60s). She seems to think that it isn't possible to raise a child to be fully sim-com (simultaneous communication). And in all honesty, with his Apraxia, there's a chance he'll never be able to speak age-appropriately. It's possible, some kids do overcome Apraxia, but some don't. Some will show signs of it to some degree their whole lives. If Connor is one of those kids, then I will be forever thankful that he has ASL. I can't believe that anyone would call that a disservice to him. Frankly, I was offended by her.

SO...that was that. We'll meet again sometime in August and the fun will begin again.
post #2 of 9
I don't think my answer will help much because I lack any experience with Connors particular issues, but here it is anyway! I have found that unhelpful professionals in IEP meetings can go one of two ways for me. Sometimes the professional has a stance or opinion I don't agree with, but is pushing the envelope for me in a way that I need to hear, and providing a point of view I struggle with, yet NEED to struggle with. Does that make sense?

The other way I experience unhelpful interactions is as a true roadblock. There are ideological differences, personality difficulties, what have you, that make a working relationship, on behalf of my child, not realistic. If that is the case in your situation, it seems that some real exploration of whether your son is better served by a different audiologist is in order. Have you had a conversation with the audiologist from the meeting, outside of the IEP meeting, to get a better sense of what her issues are with your plan? I wonder if that might give you more solid info if you do seek a change?
post #3 of 9
Thread Starter 
Quote:
Originally Posted by karne View Post
I don't think my answer will help much because I lack any experience with Connors particular issues, but here it is anyway! I have found that unhelpful professionals in IEP meetings can go one of two ways for me. Sometimes the professional has a stance or opinion I don't agree with, but is pushing the envelope for me in a way that I need to hear, and providing a point of view I struggle with, yet NEED to struggle with. Does that make sense?

The other way I experience unhelpful interactions is as a true roadblock. There are ideological differences, personality difficulties, what have you, that make a working relationship, on behalf of my child, not realistic. If that is the case in your situation, it seems that some real exploration of whether your son is better served by a different audiologist is in order. Have you had a conversation with the audiologist from the meeting, outside of the IEP meeting, to get a better sense of what her issues are with your plan? I wonder if that might give you more solid info if you do seek a change?
Yep, I do understand what you're saying. I have considered that maybe it's MY block, MY bias; and that maybe I haven't considered every alternative for Connor. I continually re-evaluate our choice to use ASL. We had the option of putting him in an auditory-verbal program (strictly spoken English, no signing allowed, with teachers and professionals that are specially trained to work with kids with severe communication issues). We also have the option of getting him an Assistive Communication Device (a computer that "talks" for him). But, after talking with all of his specialists (ENT, audiologists, speech therapists, developmental peds) we don't think that he's capable of being fully verbal right now without risking behavioral and cognitive regression. And his signing ability has already surpassed any assistive communication device appropriate for a 3 year old, so it would only frustrate him to switch to that.

I think we've made the right decision, for now at least. I don't know, sometime in the future, if his verbal skills continue to progress, we might get to the point where we need to "take sign away" in order to push him to use his verbals more. But he's not there yet.

His teacher and interpreter "get it". Because not long after Connor started school, he started vocalizing more and signing less (I think he was just confused, didn't know which to do, saw everyone else talking, so he tried to talk). It drove them (and me at home) batty! And it started frustrating Connor too. So I had a meeting with them and we talked and agreed to crack down on his signing, requiring that he sim-com everything, even the words that we do understand verbally. In just a week of that, he was back to signing everything, and everyone was happier. He came home from school recently and told me all about seeing the big bulldozer outside breaking the playground, pushing the dirt, how loud it was, and a little bit scary (there is construction behind the school, building a new school building, and they tore apart the playground). He has NOWHERE near that level of verbalizations, but in sign, he and I could share a nice exhange about something exciting that happened at school that day.

I don't see how anyone who is even a little familiar with Connor could think that using sign is bad for him. Honestly.
post #4 of 9
I don’t know anything about replacing an IEP Team member. We’ve been very lucky so far in that everyone on our son’s team has always been on the same page. But I just wanted to say that I think you are doing the right thing with Connor and ASL.

We went through several diagnoses with DS before finally getting the official ASD diagnosis. For a while, DS’s working diagnosis was: Apraxia / Auditory Processing Disorder / Sensory Processing Disorder. (He actually does have aspects of all three as part of his ASD package.) Of course DS was not verbal at that time and his understanding of verbal language was problematic. So we started using ASL signing with DS, to give him a way to communicate. He had a hard time learning sign at first, but once he took to it, his signing ability really took off. Before he became verbal, he had a vocabulary of about 150 signs. Plus he knew the manual alphabet and could read/spell, so he would finger-spell a lot of words too.

I wanted to share this with you because there was a point in DS’s development where I really did not know if he would ever learn to talk. I had to seriously consider the possibility that he might not. After a lot of heart-ache and soul searching, I reached a point where I realized that if DS never gained the ability to speak, but could communicate fluently in ASL, I would be happy with that. His ability to sign amazed me and I learned so much about his thoughts and interests from his signing. I decided that as long as DS had this way to express his thoughts and feelings, I would be happy. And I would do whatever it took to make sure that DS had a community of people he could communicate with as an equal, even if that meant immersing my hearing child into the Deaf culture. So I really admire what you are doing with Connor.

Of course, my DS’s development took a completely different route. He started speaking just before he turned 3 and got his official ASD diagnosis soon after that. All of that was several years ago, but reading your posts often remind me of those days in our journey.

Anyway, I don’t have any advice. I just wanted to say that I think you are doing the right thing. Stay strong and keep fighting for what you know is best for your wonderful little guy.
post #5 of 9
Thread Starter 
Quote:
Originally Posted by Lollybrat View Post
I wanted to share this with you because there was a point in DS’s development where I really did not know if he would ever learn to talk. I had to seriously consider the possibility that he might not. After a lot of heart-ache and soul searching, I reached a point where I realized that if DS never gained the ability to speak, but could communicate fluently in ASL, I would be happy with that. His ability to sign amazed me and I learned so much about his thoughts and interests from his signing. I decided that as long as DS had this way to express his thoughts and feelings, I would be happy. And I would do whatever it took to make sure that DS had a community of people he could communicate with as an equal, even if that meant immersing my hearing child into the Deaf culture. So I really admire what you are doing with Connor.

This is exactly where my husband and I are!! Right now, we could care less if he never talks normally. We do wish we *knew* whether he would or not, because if I knew that he needs to be fluent in ASL, then I'd move us right now closer to the School for the Deaf and enroll him there. Even if we had to move into a tiny apartment to do it. Right now we're using ASL to bridge the gap to spoken language, to facilitate his overall language development, and to ease everyone's frustrations in the mean time.
post #6 of 9
Quote:
Originally Posted by 2boyzmama View Post
We had yet another IEP meeting for Connor (that makes, um, 3 official IEP meetings, plus the MFE, ETR, and two "informal" meetings since March ) We had several topics to discuss, but before I get into the details, here's my question:

Can I ask that a member of the team be replaced by someone else? I am finding that I really dislike the audiologist that our special education regional center has assigned to Connor, I'll go into details below, but I know there are other audiologists at the regional center, can I ask that we get a new one assigned to his IEP team? And if so, how do I go about doing that??

Here's how the meeting went:

1. He had a physical therapy eval a few weeks ago, and I got the report from that. He does qualify for physical therapy, although just barely. He's always been just on the cusp in gross motor skills, he will be slightly behind, qualify for therapy, then have a large jump and not qualify for a while, then he stagnates until he qualifies again, then a jump, etc. He was in and out of PT when he was in early intervention, and now he qualifies again. He showed a mild delay in locomotor skills, and noted decreased tone in his trunk and extremities. So when school starts again in the fall he'll get 75 minutes a month of PT at school.

2. I had intended on discussing the independent assessment that Ohio School for the Deaf conducted, but it seems that most members of the team had not read the stinking report yet!!! I received the report on May 24th, and I faxed a copy to the school psychologist on May 25th (although she should have received her own mailed copy). When I requested this IEP meeting, I gave a list of topics I wanted to discuss, and this report was on my list. The school chose the time and day of the meeting, so silly me thought they'd have read the report. Guess not. The team agreed to read the report and consider the recommendations listed on the report and be ready to discuss it when the team reconvenes in August before the next school year. I said that I expect them to come prepared with a list of possible responses to the recommendations so we can all discuss which route to go with each one. We'll see how that goes.

3. ESY...Connor did not qualify for ESY. I was somewhat surprised that he didn't, and kind of irked that basically the reason he doesn't qualify is because they know that he's in private speech therapy, so they don't think that he's going to regress much over the summer. So basically since we are paying our own money to have him in private therapy, the school is now off the hook for providing him ESY services. What a convenient loop hole for them. It's not a big deal, I'm not going to push it, but the irony of it rubs me wrong.

4. So now the part that precipitated my question above. The audiologist was there with her report from her review of his records and her observation of him in the classroom. The gist of her report is that he doesn't meet the state definition of hearing impaired, which is true, but I'm fighting that at a state level because the state definition is more restrictive than IDEA's definition. That's a whole 'nother post. That part I'm fine with. But what I'm so upset about is she repeatedly was questioning our choice of using ASL with Connor. She also was questioning our involvement with the Deaf Community, at one point saying (this is an exact quote): "Connor is NOT deaf, you are doing him a disservice by calling him that and by associating with the culture so much." I said "he may not be medically deaf, but he is Deaf (cultural label) in that he relies on a visual communication for his expressive communication." She kept saying that his speech problems weren't related to his hearing (I agree that they aren't *fully* related to his hearing, but they are partially) but I kept saying "it doesn't matter WHY he uses ASL, only that the fact that he uses it means that he associates with the Deaf Community." She has an obvious bias against the Deaf Community and culture. She said numerous times "he has normal or near-normal auditory input, he's not DEAF" and I said "many deaf people wear aids and have near-normal auditory input, but they are still Deaf" [capital D means the culture label, lower case d means the medical label] I don't know what her block is, maybe it's a generational thing (she's in her 60s). She seems to think that it isn't possible to raise a child to be fully sim-com (simultaneous communication). And in all honesty, with his Apraxia, there's a chance he'll never be able to speak age-appropriately. It's possible, some kids do overcome Apraxia, but some don't. Some will show signs of it to some degree their whole lives. If Connor is one of those kids, then I will be forever thankful that he has ASL. I can't believe that anyone would call that a disservice to him. Frankly, I was offended by her.

SO...that was that. We'll meet again sometime in August and the fun will begin again.

Weird! We've had such a different experience! Kincaid has global dyspraxia with a part of that being apraxia of speech, it's the first diagnosis he got and the one that has stuck for all these years. They have tried (unsucessfully) to teach him sign in every stage of his therapy, including now in kindergarten, it's still part of his IEP that he learns sign. Most likely, he will be able to talk and other people understand him without me translating (I even have to translate for DH sometimes...) someday, but there is always a possibility that he won't... I also was diagnosed with dyspraxia, and yea, I graduated from speech therapy after 8th grade, and no one would notice most things if I didn't point them out, but everyone can tell that I can't say things that end in nger or nged like hanger, ringer, hanged etc... No, I don't need or use sign, but I also was over 50% understandable by 6 years old, Kincaid is 10% understandable... He also has an auditory processing issue, and it's his therapists and teachers who realized he is reading lips and that is the cause for his HUGE leap in receptive communication in the past 18 months, and learning this and knowing now we can't tell him to do something unless he can see us has been a HUGE improvement for our household!


Travis doesn't have a diagnosis of apraxia/dyspraxia, but he does have an autism diagnosis and his therapists are very happy that he picked up on ASL so easily (us too! Seriously, we did the complete lack of any form of communication till 3 1/2 years old with Kincaid, Travis knowing signs at 2 1/2 is huge!).

Kincaid has the same thing with PT, but, we actually turned it down this year...he gets so many hours of pullouts already that he is already missing out on nearly 50% of his class time, I didn't want to add another hour per week (what they were suggesting) or even 15 minutes a week, so I decided that something had to give, and gross motor was probably best for now...if managed to drop something between now and 9 years old I'll gladly add PT back in. We also do private ST and OT...so adding private PT would just make it so he never has time for fun.
post #7 of 9
Thread Starter 
Cinder--I also am stumped as to why the school has put up such a fight about the ASL. I don't get it. YOu'd think they'd be thrilled that I am giving them a child that CAN communicate and has ZERO behavioral issues. Instead, I could be giving them a child who is so frustrated with his lack of communication that he is on a behavioral IEP!! I don't know...I just don't get it.

I also thought about whether I wanted him to get PT services or not, for the same reason you said. He's already pulled out so much! But, right now honestly we're not that focussed on academics, it is just preschool after all, so I'd rather that he get pulled out NOW at age 3 than later past Kindergarten. So I'm going with the PT for now. We'll see if it becomes too disruptive to him or his teacher, and we'll adjust if necessary. I'm really not that concerned about his gross motor development, especially since his syndrome isn't known to cause long-term gross motor issues (but it is known to cause transient issues just like he's presenting with).
post #8 of 9
Ohh yea, I totally agree with you! We did PT then too, but therapies in pre-school were all push-ins instead of pull outs and done as part of the curriculum so he wasn't missing anything anyway, and, well, it was just pre-school.
post #9 of 9
Quote:
Originally Posted by 2boyzmama View Post
Cinder--I also am stumped as to why the school has put up such a fight about the ASL. I don't get it. YOu'd think they'd be thrilled that I am giving them a child that CAN communicate and has ZERO behavioral issues. Instead, I could be giving them a child who is so frustrated with his lack of communication that he is on a behavioral IEP!! I don't know...I just don't get it.

I also thought about whether I wanted him to get PT services or not, for the same reason you said. He's already pulled out so much! But, right now honestly we're not that focussed on academics, it is just preschool after all, so I'd rather that he get pulled out NOW at age 3 than later past Kindergarten. So I'm going with the PT for now. We'll see if it becomes too disruptive to him or his teacher, and we'll adjust if necessary. I'm really not that concerned about his gross motor development, especially since his syndrome isn't known to cause long-term gross motor issues (but it is known to cause transient issues just like he's presenting with).
Maybe they are too lazy to deal with learning/teaching in ASL? Or the thought of it overwhelms them?
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