Tuesday, September 02, 2008

Yay for a good IEP team!

I was very pleased by the IEP team, the meeting itself, and the plan for Miss Emma. A few things that aren't wonderful, but you take the bad with the good. And overall it is very good. This is going to be long, don't worry, no test at the end :)

First off, we met at a school that is about 25 minutes from our house. It wasn't a fun drive. It's not one I'd like to do every day. But according to Emma's scores on the paperwork from her evaluation, it's the only school that would have an appropriate facility and classroom to deal with Emma's needs. This classroom is also called the Profoundly Mentally Handicapped room.

When I first was told this, I thought, ok, I guess I'll have my work cut out for me! After all, I really didn't (don't) feel like this is Emma's status. In Florida, though they're trying to change the terminology, they have three "classifications" of special ed students. The 'top' level is EMH or Educable Mentally Handicapped. Then in the middle is TMH or Trainable Mentally Handicapped. Last is PMH or Profoundly Mentally Handicapped. These terms seem to be on their way out from some articles I've read, but they are still used none-the-less as they're commonly used and are something that's been in place for many years.

I went into the meeting with two, maybe three goals. The first was to have her set up as a pre-k status so that if she does go to the classroom in the winter (right now we're looking at January or March) then she'd be with 3-4 yr olds, not 5-7 yr olds. She's tiny, she's young, she needs to be with kids a little younger than herself that are doing just a little more than she is doing. The second goal I had was to make sure that she did NOT have the label PMH attached to her IEP. I feel like she's made such HUGE gains in less than 6 months along with 3 surgeries and I don't want her to have to get rid of a label later on. The third was to find out if there was any way possible to get her appropriate schooling done at a closer school.

I do believe all three were accomplished, to some extent, and I am pleased with the end result!

First off, as a little piece of advice to any parents coming up behind me, if at all possible, bring your child with you to the IEP! It's so much easier for the people that are sitting around the table to help you make a plan for your child if they can see him or her, hear the child, watch them play, etc. As long as you can still function and do the IEP with your child there of course. Mike was the baby-tamer and I was the one with a goal in mind :)

It just so happened that one of the important people, um... well, the one that CALLED the meeting, had written down the wrong time and was about 40 minutes late. Though this might have been a bad thing sitting around waiting with a table full of people and a small child, it ended up being perfect. In the silence of the room after introductions I asked if I could share a little about Emma while we waited. PERFECT.

I shared her history, a little about her medical side of things, and a little more about the difference in her in the past 6 months. I also had the perfect opening to say this: "Although a child that's 5 yrs old and comes into this room like Emma might be said to be "this way" their entire life, Emma has never had any opportunities. It's not the usual situation where every therapy possible has been given and she hasn't improved. It's just the opposite and I think we'll all be surprised at what changes she makes once in a school and therapy environment."

One of the people that sat in on the meeting introduced herself as the school psychologist and said she doesn't generally sit in on the younger kids' meetings, but she was there from the last meeting, and everyone else sat down, and, well, she didn't get up LOL. So though she was quiet a lot of the meeting, she's the one that voiced very clearly that Emma would NOT be considered PMH. The PMH teacher also chimed in and said that the major drawback to her classroom as placement is she seems that Emma needs to be surrounded with language and she wouldn't be in her room. There's very little language and little or no interaction between the different kids in that room. She didn't feel that would be a good placement for Emma.

So, the current status is that Emma is considered Pre-K, homebound, and we'll hear from her teacher within a week or so and she'll get 2 hours/week of home teaching.

The down side is that that's ALL she'll get. No therapies. She doesn't qualify for speech right now which is a post in and of itself, but I am happy to hear that they had an SLP write up language goals for her that will be worked on with the teacher. Also, she needs a release for a PT and OT eval and those will happen in 6-9 weeks. Then after that she can start receiving those services if she qualifies. We hope that at that time she'll be qualified for speech as well and will start all three along with the 2 hours of teaching each week. Not bad... in the long run :)

In the mean time, they stressed over and over again that we need to get some medical therapies going- private ST, OT, and PT because she'll really benefit from those immediately, even tho she can't get them through school and even when she does, school won't be able to work on everything that the private therapies do. The downside to that... I believe private therapies charge me a copay per session and if we don't get Medicaid to kick in, I'm not sure how that'll work. Regardless, it's a path to pursue and see what we can do.

Wow, this is really long! I'll be amazed if anyone actually read this far... you'll have to leave me a comment and tell me how awesome you are!!! :)

Ok, so we got pre-k instead of kindy, we got no PMH label, and... the last thing was schools. Right now this school is the ONLY one with openings. This is what we were told anyway. So regardless of which school is closest and has services that will serve Emma (and in January Brianna too), this school is where they should go because the class sizes are reasonable and they won't be in overcrouded rooms as their first school experiences. I kindof get this, though I'm not really excited about the distance. The good thing is that next year they'll be automatically placed at the school closest to us because they're already "in the system" and have a priority for our closest school. This means that we likely can also get Kristopher in that school even though it's out of area for us (our 'home school' doesn't offer ex ed services). And... Micah will be turning 3 just a month after school starts next year and all FOUR kids should be in the same school. Two in the 3 yr old PreK, two in Kindy :) :)

Ok, I think that's all for now. I'm pleased at Emma's probable placement scenario for the winter and I'm ok with the steps to get her therapies through the school system right now. And I'm very pleased that it sounds like though this will be a bit of a rough year, next year will likely prove much easier and I REALLY LIKE the school they will be at... that's right down the road from the church... and where I did my student teaching... A LOT :)


  1. Sounds like a productive meeting.

    You bet I read the whole thing. I am just starting all of this with Polly and need all the tips I can get!

    Thanks Merideth!!

  2. We are still with you! I am happy the meeting went well, and how smart of you to take Emma.Now they can see her as a person instead of just a bunch of facts on paper.I am sorry you didn't get all you wanted, but it sounds like this wil be a good stepping stone to better things in the future.

  3. Okay,
    Will she not qualify for SS disability? That would help with the medicaid issue. I have a friedn who is a wiz at this stuff and she would love to walk you through some of it if you would like. We call her the IEP queen. Let me know and I will hook you up with her

  4. Phew! I did it, and boy am I wiped!

    LOL, just kidding, I Love reading all things "Emma". I hope she get's medicaid, and that they provide the services she needs. Be sure to let us know.

    kathy and pj

  5. Meredith,
    Don't give up on speech therapy(If you have all of that extra energy to fight.)
    the fact that they siad she needs speech from insurance means she needs speech. These are indeed school goals. They will try to get away with this. Don't let them! (Again, if you dont' have the energy to fight, we totally understand, but if you really think she needs this, they should be providing it. CLEARLY, Emma needs educationally based speech therapy!
    Mary Stolz RR

  6. I'm glad most of your goals were met and you left satisfied Meredith. I hope that the process to get PT and OT started for Emma goes quicker than expected and that she can get speech therapy too. I'm sure we'll all continue to be inspired by how much Emma grows and learns.

  7. Sounds like a good meeting overall.

    The speech kills me, though. How can one teacher say that she needs to be around kids who can talk on one hand and then on the other say she doesn't qualify for speech?

    Our insurance won't even cover speech for kids because they feel that it is a school issue (or it must be a "treatable" condition -- same for PT & OT).

  8. I read all the way. Thanks for including all the info. We homeschool but I am going to write an IEP for Katya anyway just so I can see how much progress she has made and make sure we stay "on task".

  9. What alot of great info, though we've got a little time still. And of course I read the whole thing!

  10. Great Meredith! That's a wonderful START and you'll be able to add more as you go along!

    And yes, I read the whole thing, LOL!!!! You're a wonderful advocate for Emma!

  11. Of course I read it all the way through! I'm always interested in hearing about your children and what's going on with them and you. What's more, you have a way with writing that keeps the reader interested! Sounds to me like a very productive meeting. You are exactly the mother that precious Emma needs, I just know she is going to thrive under your watchful and loving eyes. best wishes

  12. Hmmm the SLP in me is wondering how in the world she doesn't qualify for ST services. You might want to question that one. A pretty much nonverbal five year old should be a given!

  13. I read the entire post--first because I am a special education teacher, second because we are beginning a journey to adopt a kiddo with DS. My how labels can be different! In Ohio, I teach MD, which is Multiply Disabled...I think the label is more "friendly".

    I am amazed by you. I just want to know how you do it!

  14. Of course I read the whole thing, I HAVE to know how a story ends, lol ;o)
    I'm so pleased for you with the way things turned out. GREAT idea about bringing the child with you. I truthfully wouldn't have thought of it, only because of the "distraction" factor, but I'll just get the Daddy Kid Minder to come with me...since I'm the Momma lion when it comes to my kids!
    Private therapy might not be too bad. If you can get them to tell YOU things to work on, you may just have to have a few visits kind of spaced out, know what I mean? I do most of Jonathan's therapy while we play or dress. I get tips from his various therapies, but I impliment them on an ongoing basis. His therapists didn't see him for five weeks while we were on vacation, when we came back he was doing so much more than when he left. They were blown away! I told them God and love can do anything!

  15. I am not the awesome one here, YOU ARE! You rock Mama Meredith! I am glad it was a good meeting and I hope that Medicaid kicks in soon so you can get the therapies she needs. I look at Emma and I see nothing but potential for such a different future! She's beautiful and deserves the best! :)

  16. I don't know how awesome I am, but I waited all day for this post - of course I'm going to read every word!! -no matter how long it is.

    I'm so glad everything went so well!!

    Praying for you and your babies in Texas,

  17. Congrats on surviving and making out so well at Emma's IEP! I never could get my kids ST at school when we lived in FL either. We were told that at their developmental level, they wouldn't be talking anyway, therefore they didn't need speech therapy...grr! I hope they relent and she gets all of the services she needs!

  18. Meredith,
    It sounds like a great plan. It is amazing how different things are from state to state. DE was behind the times, too. Thankfully we are in TX now!!
    I love reading your posts!

  19. Just wanted to tell you that we have fought the same battle about ST with Xander. We were told in VA that because of his developmental level, ST would not be offered by the school....and Xander was already signing and everything. We're currently fighting the battle here in AL, so I'll let you know how it turns out. And, unfortunantly, insurance sux when it comes to ST. Private OT and PT are covered 100% with our insurance...but we haven't been able to get them to approve ST...yet. I'm working on that too!
    One other thing, when you check with your insuance company about therapy, remember that you want therapy based on "failure to thrive" not Ds. A "Failure to thrive" diagnosis for Xander meant our insurance had to pay for private therapies automatically without question. So, you might want to check on that.

    I'm glad the IEP meeting went well. It sounds like you have a good plan in place.

  20. Sounds like a great IEP. Thank God for the one person being so late. What a great mom you are for taking the opportunity to tell the others about Emma and her progress and for taking Mike and Emma with so they could see the interaction and how she is at a non home setting. I say non home setting because my SN daughter does things at home that she doesn't do at school. The school people only get a glimpse of your Emma(did Emma have any testing done before the mtg?) Glad things worked out. I know that the 25 minute drive sounds horrible but it sounds like it would be temporary until the kiddos are in the system. I live in Indiana and things do work a little differently.I do the 20-30minuted drive every day, twice a day through sunshine, rain, sleet, or snow but for peace of mind it is totally worth it. They call her classroom a life skills class instead of Special Education room. Right now there are 9 kiddos in the room, 1 teacher, and 2-3 aides in the class at all times. They usually have an intern in the class a couple days a week too. Also the kids get to do "specials" with the typical kids and spend a certain amount of time with the typical peers to interact and learn how to do age appropriate things. The life skills class is for K-5, middle school is 6-8, and then high school. We also have an integrated preschool that for every SN child their is a typical peer. The preschool works with the elementry school and places the child in the stage/room to best fit the childs need. The typical classes have aides in them for kids who have moderate SN.My daughter doesn't go to the elementry school that is assigned to her (only 10minutes away) but I know she is getting the education she needs at her current school so it is worth the drive. On MWF I drive back and forth at least 4 times since my son goes to preschool. He goes to the same preschool my daughter went to so he can see how other SN kids are and it helps tremendously. My SN daughter receives OT and Speech at least 2-3times a week at school and then every other week we drive an hour to a private SLP. The school is great, but it only gives her about 20minute sessions. When she turned 3 and First Steps (home therapy) stopped then our only option was the preschool or private services. We didn't think she was ready for preschool yet so we had her evaluated by the school and were just going to get SLP,PT,and OT. Once she did the testing she did qualify for OT and SLP but the school would only do one 20minute session a week. So we did get her into the preschool after a month. While looking into other options our great SLP came into place. Yes we do have a copay, but it is worth it and most of the therapist will work with you. Plus like another commentor said, wouldn't Emma qualify for SS benifits? I don't know the laws in Flordia. Sorry to ramble on. I wanted to give a view of what others have done and I was were you are when my daughter was 3 emotionally and spiritually. My daughter doesn't have the obsticles or medical issues that Emma or your other children face. She doesn't talk and has other developmental delays, sensory issues, and seizures. We have noticed incredible progress.
    You are doing a great job, keep up the good work. You are a great advocate for your children.
    Take care and God Bless!

  21. Hi!! I have been praying for Emma and your family since I found out about her surgery thru a different blog! I CAN NOT believe that Emma is not getting speech thru your school system. I live in MA and am a consultant for our local Early Intervention Program. I work with many children with Down Syndrome and we help the families make the transition from EI to preschool at age 3. It is the legal right for a child who is non-verbal to receive speech therapy (and whatever other kind of service they need OT, PT, etc.) at age 3!! Please, please do not allow this from your school system. You do not need to seek private speech therapy for Emma. I am sure their is an advocate in your area that would go to any meeting with you to explain these legal rights! Maybe contacting your local DS organization or go national!!

    Emma can learn so much, and since she is homebound at present, the school should be sending you a SPL(speech-language pathologist) an OT and a PT along with an educational therapist!

    I hope this doesn't sound too harsh. I just can't believe that a school system would not provide these services especially with IDEA(Individuals with Disibilities Education Act).

    You are an amazing Mom with an amazing family!


  22. I did read all of this, do I get brownie points(I'll take the brownie instead), but am a bit confused. Are the kids going to Ap.. next year, or a school closer to your house, Or is Ap.... the school closer to your house?


  23. Emma may not be able to speak up for herself, but what a loud and clear voice she has through her Mom and Dad. I think it's great that you are using your voices to let that little girl be heard.

  24. Hi Meredith! I too have been on the other side of the IEP team when I worked as an OT (before having kids-Madison-7 and Joshua-3 (Ds). I worked in Hillsborough County Public Schools in Tampa, FL. I was floored to hear that they STILL use that terminology of TMH, ect. I worked there in the early 90s!! That's 15 years ago and they still use those antiquated, degrading labels, wow!!

    And as I'm sure you already know if you are a teacher, you don't have to take what the IEP team says they recommend as the "be all end all" decision!! They may say "no" several times to SP but if you stick to your guns and have documents to back up what you want, then I'm sure you can get her SP!! I know there are lots of others out there to help you, such as advocates that can attend the IEP meeting with you if you need it. I found that taking my child's evaluations with me to the meeting, learning how to interpret the scores he received (scaled score, mean, standard deviation, etc) and plot him on a bell curve, to show his great need vs. just the fact that I'm his mom and of course I want all the related services for him. They told me no a couple times, but I stuck to my guns, showed his scores and basically said tell me why you think he doesn't need it. I've got proof right here on paper, what do you have? You can use the same reasoning of Emma's history and lack of stimulation as back up if they give you the "her language scores match her cognitive level speech". She definitely would benefit and you want it and that's that! Sorry, I'll get off my soap box now. All those excuses made sense when I was a therapist without kids, but now I realize how ridiculous they are!! I don't live in FL anymore, but it shouldn't matter where you live! I recommend Wrightslaw.com and their books and conferences. They talk a lot about being well versed in interpreting test scores if you forgot everything you learned in Statistics 101 in college like I had:) Good luck!