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Forum: Children with Special Needs

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  #1  
April 5th, 2010, 06:02 AM
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Does anyone dread these as much as I do? I always feel like I am just so run over every time we have one - our whole team gathers, and while they try to include me, it always feels like they're all discussing Danny and I'm just sort of...there.

How do you handle your meetings? What kinds of things do you do to prepare?
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  #2  
April 5th, 2010, 08:50 AM
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I have no idea what they are... This feels like I'm about to dive into another dimension.
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  #3  
April 5th, 2010, 07:28 PM
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Quote:
Originally Posted by MamaAnna View Post
I have no idea what they are... This feels like I'm about to dive into another dimension.
IFSP= individual family service plan
IEP=Individual Education Plan

Basically, they are an outline of what special needs a child has, goals for that child to reach, and how the team is going to help the child reach those needs. An IEP is usually done by the school board, with the school psychologist and includes things like special test permissions (my brother, for example, had it in his IEP that he have an aid to read him the instructions on the tests, and that the aid will be provided by the school) and also what accommodations the child may need (again, my brother as an example: he needed books on tape to participate in English classes, and that was written in his IEP so that teachers would have to follow that need and help him achieve his goals) IFSP is done with whatever current specialists and therapists your child has, and it is more family inclusive. Jonah's IFSP has a description of his evaluation report, and then a list of goals that include things like "using the words Mama and Dada meaningfully and purposefully" and "pointing to five body parts consistently, at least two non-facial." and finally it has a description of our plan of action for handling those goals, what therapies he will go to and exercises etc. IEP is for school aged kids and IFSP is for younger kids. Hope that helps

Kel, I'm sorry that you feel this way. I would definitely talk to the team members about this, or even just one member that you feel comfortable telling. You should definitely be a part of this process!!!

Jonah's team is wonderful at including me. I have written just as much of his IFSP as they have. My experience might be different than others though, because of my background and aspirations. I was very upfront to all of his therapists that I went to school for cognitive development, fully intend to go back to get my masters in speech pathology, and I understand every word they are saying. So I kind of forced my way into their conversations if they ever make me feel like an outsider looking in. It's all of the medical stuff with the occupational therapy and orthopaedic surgeon that makes me feel the way you described. I just keep asking them what they mean, and what does that mean for Jonah etc. I try to remind them that I am there too, and I am a scared mama who wants to know what they think is going on. They usually soften up after I pipe in with my confusion
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  #4  
April 5th, 2010, 07:43 PM
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While I know that I do not know the team's fields as well as they do I do know that I study my butt off to be fully educated for my son's IEP meetings. I wish that the head coordinator did not talk down to me but I can also understand why when more often than not most parents are not educated on the terminology or techniques that often go along with IFSP/IEPs.

Ask a ton of questions and always stand your ground when you know what you're doing/talking about. I've found that doing that has always been quite effective with my son's IEP team. I'm still new at this myself and often feel like they're talking about him in front of me too, however I've got a big mouth and speak up as soon as something isn't going the way I want it to go for DS's sake.
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  #5  
April 6th, 2010, 06:12 AM
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I need to get a little bolder with them; I know it, but whenever I do speak up, I always end up feeling put on the spot, like because I spoke up I should write the goal completely. I think part of it is that, in my opinion, we're ready to roll out of PT and OT and the team doesn't seem ready for that. I'll admit to being a little worried about transitioning to an IEP, because at least with the IFSP it's the therapy team that knows my son a little...

I wish I had a big mouth, LOL. It's certainly useful with special needs kids! I was great about it with the doctors and implant teams, but on the therapy side not so much.
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  #6  
April 6th, 2010, 07:03 AM
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I honestly don't prepare at all. I hate these meetings because they basically throw all of Ava's problems in my face. We have the next IFSP on the 13th.
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  #7  
April 6th, 2010, 08:10 AM
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Yeah, I definitely know that feeling too Hope! Though for me it seems like the build up to the IFSP is just as bad if not worse. Both PT and OT talk through where we're at with me ahead of time, and our speech lady does this "Vineland" test/evaluation that goes through a bunch of developmental questions - daily living, coping skills, language skills, etc, etc - and then grades him on each area. The numbers are always ridiculously low and just give me this pit in my stomach, even though the test is obviously for a typical child, not a child with a major hearing loss.

Of course, I always get a chuckle out of the one asking if he knows what a phone does and/or pretends to play with a whole. We always use a bluetooth headset with our phones because - well - we've got 2 young kids that would want to hold the phone, push the buttons, etc. So no, no he does not

Let us know how it goes, Hope! Ours is the 27th this month.
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  #8  
April 6th, 2010, 09:34 AM
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Ijust had my first one yesterday and I am glad I didn't read this thread first lol

Ours was fine, we went over all of Avery's good and bad, we discussed what we wanted for her short term. Long term is harder as we don't know what her outcome is going ot be. If she has 20/400 acuity is different then if she was at 20/80 kinda thing.

We met with her ECI guy, the vision educator and the mobility therapist. They all 3 read me their reports (bringing me copies of it on Friday) and then they told me thier goals and I agreed to them. Then they asked if there was anything I wanted to work on and i said her movement which was already a goal.
I am VERY comfortable with her vision educator who will be the main one that she will have as long as we are in this school district. She made it clear that no one can meet with Avery unless she is there and I felt very confident that she was in good hands!
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  #9  
April 6th, 2010, 11:26 AM
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That's fabulous about Avery's team! I love hearing the good stories I don't want to make my team sound bad - they're all wonderful people, and I think part of why I feel so overrun is that they all want so much for Danny after seeing him for so long. They're part of our family.
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  #10  
April 6th, 2010, 12:16 PM
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I am sure they only have his best interst at heart
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  #11  
April 6th, 2010, 06:21 PM
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I'm actually really sad to hear your ladies' feelings about these meetings That is not the way they should be going, at all. The point of the IEPs and the IFSP's are to make you a part of the planning process and to make sure that your children are getting all that they need- and you are their mothers, you know better than any therapist or specialist what they need, so you should not be feeling like you are talked down to or like they are just talking about your child in front of you.

Kel, if you think that a test is not suited for your child, or that a question might not apply, you should include that in your answers. Some tests are required by the state and the specialists have to do them in order to even apply for the aid that Danny needs. But they should be noting in the test that the scores may not reflect true life because he is hearing impaired and may not encounter the items being addressed (like a phone being used)

I really think that if you tell them how you feel, they will listen. They are there to help. I look forward to these meetings with Jonah's team, because it makes me feel at ease to know that there is a plan of action going on, and I strongly feel that is how you ladies should view it too. There's something not right about the way they are handling the meetings if this is the way you feel, and other parents must feel the same way, so definitely bring it up to someone.
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