Judy's Homegrown Blog

We had our daughter’s IEP today; the one where the school made their offer of FAPE (Free and Appropriate Public Education).

We got to a point in the IEP where I started to feel like we weren’t going to be able to collaborate because the school’s attorney was pressing the issue that we can’t agree on how many hours of what services to provide.

I spent the last few minutes of my input explaining all the features of what an appropriate setting would be for Jillian: that she needs half the school day (4 hours) in intensive, distraction-free one-on-one tutoring with multi-modal (read: affecting many senses, like hearing, visual and kinesthetic) forms of delivering information and the other half of her day in a small (up to 4 kids) language-based class. On top of that, she should have daily one-on-one speech therapy, physical therapy for 2 hours a week, and occupational therapy for at least 2 hours a week, also one-on-one. There are other features of an appropriate program which I will not get into here, for the purpose of brevity.

The school offer was half way between what she has now and what she needs, according to her assessments and specialists.

But I insisted that her program as it is now is not acceptable, and that we need to move Jill into an appropriate program right away, no time to waste.

So I decided it might be the time to bring out the visual aids to help the IEP team all be on the same page about how Jillian learns. I brought rice and some containers: a bucket, a one-cup measuring cup and a tiny plastic cup holding no more than 2 Tablespoons’ worth.

Whereas when we illustrate Jillian’s process, we have to put the bucket all the way across the room and take that tiny plastic cup, fill it just a little at a time so as not to overwhelm her, and she has to carry it across a convoluted pathway of neurons, taking a lot of time, to get to the bucket just to dump in what little she can carry. If there are any distractions, that little cup may spill the information before it ever gets to the bucket.

What’s most important of all, is that she needs to learn strategies to organize what’s being dumped into her brain, because without the strategies, those pieces of information get stored haphazardly.

I think I went a little overboard when I gave an example of Jillian’s mind getting distracted by spilling rice all over the room. Granted, it was only two tablespoons’ worth, but if you know how rice gets all over the place, you can just imagine the impact of my visual aid presentation.

The attorney for the school, Adam, got up from his chair and said “I think this meeting’s over! This is completely inappropriate!” Which made me feel really bad, because I’m kind of a neat freak and I was wishing I had a sweeper or a vacuum at that point.

But I think that it wouldn’t have made any difference how well we made our points, or how much we tried to explain what Jill’s difficulties are. I think the school had decided what they were going to offer, and that was that.

So we notified the school at the IEP meeting, with everyone present, that we were enrolling Jillian in Lindamood Bell on Tuesday, after the long weekend. I’m relieved that we don’t have to wait any longer to get her started on an appropriate education.

More to come…

The night of the IEP, Jill went in her room and pulled out four boxes of the Hooked on Phonics program and opened one up to see how to use it. She was showing me how she not only wants to learn how to read, but she’s willing to do her part to learn! It made me want to cry, because she needs a lot more than a Hooked on Phonics program to get her reading.

So as not to discourage her (I was afraid it was too difficult for her to follow), I got her set up with a tape-recorder to play the cassettes, and the flash cards. She bopped along with the tape, trying to move the flash cards along with the speaker. She shows such determination.

I think she realizes how important this is for me: that we get her into an appropriate program that will actually teach her the foundational skills necessary to read. She needs a lot of one-on-one, with a person modeling the sounds and waiting for her response, to make sure she’s “getting it.” No amount of Hooked on Phonics can do that.

And she needs a lot more drilling than typical kids. The way her brain works, she needs to repeat and repeat and repeat something until it’s hard-wired. We who learned how to read on our own take all this for granted. She needs much more time and attention to task than most people.

I hope the school comes to the conclusion that they need to provide this one-on-one type of teaching, and that we can’t waste any more time trying methods that will ultimately fail her. If they really team with all her providers, all the experts that have evaluated her, they cannot help but come to the same conclusions we have.

Right now, I’m optimistic that the school wants what we want: to provide her a teaching method that works. Please teach our Jillian how to read!

BTW, Jillian has made it patently clear that she does NOT want me to be the one teaching her. She wants me to be her “safe haven”: the person she comes to for comfort and loving care. If I could have been her home-schooling teacher, I probably would have started doing it a long time ago.

I’m celebrating my exhaustion by imbibing a little homemade limoncello (thanks, Lynn!) after a long two weeks of preparing for Jillian’s IEP meeting.

For the uninitiated, an IEP is an Individualized Education Plan. It’s a tool used by the schools to describe needs, establish eligibility for funding, and set goals and educational placement for special needs kids. The kind of people attending an IEP meeting are professionals like a school psychologist, school Program Specialist, Physical Therapist, Occupational Therapist, Adapted PE teacher, Special Educator, Teacher, Clinical Psychologist, Psychiatrist (the person prescribing the ADD medication), a couple of attorneys and all the private specialists (PT’s, OT’s, SLP’s) that the family may hire, plus the Mom and Dad. Friends of the family are allowed to advocate for your kid as well. All told, we had 16 people at Jill’s IEP meeting.

I stayed up til almost 1 am getting my notes in order and finishing reading the 275+ pages of reports that I received from all our providers and all the school’s specialists.

I had done all my homework: visiting various school settings, reviewing the programs that the school wants to provide for Jillian to remediate her reading and math, and making sure all our providers had finished their assessments and reports.

But here’s the outcome: after over 4 1/2 hours of non-stop review of Jillian’s findings, we were still not done. We know what kind of placement they want to give Jillian, but we did not have time to respond to that offer. Plus, our Psychologist, the esteemed Claudia McCulloch, didn’t have a chance to give a summary of her findings, and she had done the most extensive workup on Jill that anyone in her entire medical history had ever done. The best way to depict Claudia’s knowledge of Jillian’s capabilities is that she probably knows Jillian’s brain and how it works better than anyone except maybe me.

I would write more, but I need to get some sleep. There will be more later, for all the parents who I know and have grown so fond of. I’d like to have a bumper sticker made: It takes exceptional parents to have special kids.