From the time Kennedy was born I knew that eventually we would be part of the world of IEPs. I learned my acronyms… LRE and FAPE… I took classes on IEP law where I learned that if you weren’t in total agreement, don’t sign ANYTHING. We went to Kennedy’s placement meeting for Kindergarten and I was handed everything I asked for on a silver platter. Really? Is it really going to be THIS easy?! We got our FAPE in our LRE and I was one happy mama! I was SUPER advocate! Until… now.
Two months into the school year and now things are starting to unravel… Kennedy isn’t doing exactly what they want her to do and suddenly her LRE is being threatened and I’m realizing maybe I don’t know as much about IEP law as I thought I did. I’m also realizing I am the the very tip of a very long battle… not just this year, but for the next… 13? 14? 15? years… and when we bring Kellsey home from Eastern Europe and SHE starts school, I will be fighting for her too.
If I could have one wish, it would be that my daughter’s team will remember that Kennedy is Kennedy. She is a little girl who is 5 and just starting out in school. She is getting used to a new world full of different rules and routine and sounds and colors and distractions that she needs to process in her brain. She is NOT her diagnosis. She has unlimited potential, and if they give her the time to prove herself, she WILL. I wish they could see past the Down syndrome and see HER, and I think this whole process would be much easier for all of us. In the meantime I will be her advocate at school and I will be her mommy at home. In both places I will always be her biggest fan.
Seems to me that there is a disconnect between looking for a fight (as you were prepared to do) and the desire to see Kennedy as a child first. I doubt the method leads to the desired behavior.
I’ve seen the warrior mom attitude fail so often in the schools. Those who think they win often spend years (15 indeed) in constant battle.
Never saw this while I worked in the schools, but a blogger shared that she takes cookies to the IEP meeting. And a framed photo of her child to set on the table. Now that’s a method to remind school personnel of the reason for the meeting.
I’m so sorry for your struggle. I totally agree with you! Teachers need to look beyond the labels and look at the individual teacher’s needs. I teach master’s level courses to teachers and I go over the labels during the first class and that is the last I mention them. I think it is more important to look at what each student needs and move forward from there. I just don’t understand why many teacher’s don’t see this or think it is so difficult? It isn’t! Has any teacher mentioned Universal Design for Learning to you? If not, really need to look into this!
OOPS! take out individual “teacher’s” needs and change that to individual “student’s” needs! I got so caught up in your story, I forgot to proof read my response!
I was just going to echo what Barbara said.
Sometimes it doesn’t hurt to see if you community has a special needs avocate– That way you can come to the meeting focused on your child and then let the advocate focus on the legalities…
and when all else fails, kill’em with kindness!
I found that when staff that are reluctant,they take our kids’ behaviors personally…
I know that my kid is NOT acting out to be defiant or disruptive, but only because he needs something different– maybe a break or mabe a sensory break–or maybe more directions.
I have had to remind staff that my son is not having these behaviors on purpose, but only because he is fustrated…
Gosh… I wrote a book…ooops– not my intention… but I hope & pray any of this helps…!
I am a teacher. Granted, not an elementary level teacher. From where I sit, I can tell you what makes for a good classroom level IEP, which (again, high school speaking) may or may not be helpful:
* Let the child’s needs lead.
Anecdote:
I have had students who have had the separate setting accommodation on practically everything and they never used it. In fact, one was mildly insulted that Dad (for it was Dad in one case) was Warrior Dad to get that accommodation placed on the IEP. Student turned it down every time, but every time the student turned it down it took a self-esteem toll.
Anecdote:
I had a student who had extensions on practically all classwork and projects. Poor snowballing student. Sure, extensions are great, but the poor kiddo was behind in Every. Single. Subject. And it continued to snowball, because she sat in the same class as her peers and got the same in class assignments and so she was still trying to complete the project from last week (which is still accepted for full credit) while also having three pages of practice work from this week (which is still being accepted for full credit) waiting in the wings. It was enough to drive her to become frustrated and shut down and not even try to start because after a week or two of school, she was already behind. Needless to say, she failed the course for lack of practice (which leads to mastery).
What each of these children needed (no separate setting, reduced assignment load) was not what they got because in both cases there was a parent who had educated themselves and so led the meetings. Everyone at the meetings was more than ready to agree with the requested accommodations because no one knows a child better than their parent. However, a team approach with a clear focus on collectively and collaboratively discovering the child’s needs and crafting interventions to fit would have better served these children.
* IEP Specialists are legal experts and while employed by the school, are advocates for your child. Doesn’t it feel good to just show up to the meetings as Mom? This isn’t to say that there aren’t the occasional bad apples by way of IEP Specialists, but we’d love to see you as Mom rather than Lawyer, if you know what I mean.
* IEPs are like medication for a chronic disease. A family member of mine has a chronic disease and his medication is constantly being tinkered with. Some times he gets too much, sometimes too little, and sometimes what has been working suddenly stops working. Same, too, with classroom interventions. Just like you’d never take it as punitive if the doctor changed your dosage of insulin, if you were a diabetic, so too should you view the changing accommodations given to a beginning IEP. Especially at the beginning of the process. Because at this stage, no one knows the exactly perfect note to hit until it is discovered.
If you are worried about your daughter losing her LRE and are capable of waiting it out, everyone will quickly see that being in a different placement is also not the right note. Then things will change again. (Or :: said in a small voice :: maybe she could use the gentler introduction to the school environment that the school staff is trying to provide and will flourish into the wonderful, cheerful, loving, excited learner that you know she can be.)
“J”, thanks for your insight.
Luke is now in 1st grade, so I have gone through 5 IEP cycles. The first one was awful, while the school district could have done better, writing an IEP for an non-verbal 3-year-old is tough.
Every year the hard part is determining the number of minutes for speech, OT, PT, and special ed. What I have learned with IEP’s and meetings –
Never be the only adult on your side, at the very minimum you need someone with you to take notes. Also, try not to look at it as you against them.
Always introduce your child to the team. Write an “I am Kennedy” paper, add pictures. The team needs to and wants to know your child. If possible (not for me) bring your child to the IEP meeting to meet the team in person. Then have them go elsewhere. You want to be careful about keeping them in the meeting. Getting services is about deficits and you don’t want them to hear all the things they “can’t” do.
Try to have a parent-teacher conference EVERY quarter. This meeting should be about 30 minutes. You want as many team members there as possible. If you can’t get them, call it an IEP meeting, then they have to be there. This is the meeting where everyone gets to talk about all the good things your child is accomplishing. I have been amazed at how many really good ideas come out of these meetings. Since there is nothing to accomplish (i.e. the IEP), there is time to interact. Also 30 minutes isn’t a big time drain on anyone.
As a parent, we look at our child’s education as a whole — where do we want them to be when they leave school — college? trade school? group home? The school, for the most part is looking at the current year — what type of accomplishments are we looking for now. I think the IEP should take into account both goals. For example, my son is non-verbal, so next year (2nd grade) I am going to do my best to have him have keyboarding instead of music class.
It took Luke more than the 1st quarter to adjust to kindergarten, big school, regular class, new service providers, etc. There wasn’t a lot of “academic” learning that took place, yet he grew by leaps an bounds. This year, with all of that behind him, he has taken off accademically. No, he isn’t at a first grade level. But I would also say, that if you charted it, his growth has been at a greater rate than many (most?) first graders.
I don’t know a parent with a child with special needs that doesn’t gear up for the fight… whether the fight comes or not. The prep and the first 5 minutes of each meeting before you know which way it’s going to go are so stressful. Keep up the good fight Mom! We’re behind you all the way!
I totally love the cookies and a picture approach! Think I’ll try that myself!