I just returned from Mairead's Team Meeting to discuss her IEP. Basically, it was incredibly disappointing. The team determined that Mairead's only "disability" is in communication, and decided that twice a week, she can receive speech therapy for 30 minutes in a small group with no typical models. They do not feel that she needs pre-school at this time. I was devastated and it was all I could do not to break down because we all know how badly she needs this.
The staff from Early Intervention was there and they were wonderful. They did everything they could, as did I, to make a case for Mairead needing pre-school, but the team from the schools seemed pretty wrapped up in her test scores which put her in the 'normal range.' They basically wanted her to either have an identified disability, or to test at a year or more behind in her skill level.
Going into this process, I expressed concern to the team that because Mairead's skills are so inconsistent and all over the map, that her weaknesses would not be so obvious, and that we would have a hard time meeting her needs. That is exactly what happened. They saw all of the things that she does well, and decided that her only need is speech. They focused on everything she did well. What they didn't do was ask her to tell them her name. Because she can't do that. She can't tell you how old she is or where her Daddy goes every day. She can't tell you what she had for breakfast, or if she is tired, or cold, or even hurt. Is THAT in the normal range? I doubt it.
I understand that there are laws governing the creation and administration of IEPs, but I also know that they are supposed to actually value the input of the parent and the reports from Early Intervention. They basically dismissed anything that we had to say about how much help Mairead needs. They 'weclomed' us to enroll her in private preschool and to come back at age 4 when they would 'welcome' her to the public schools. Well, private preschool costs a lot of money, and they don't have a staff of Speech Pathologists, Physical Therapists, or developmental specialists. When she is 'welcomed' back at age 4, she will not be functioning at the age of other 4 year olds. I fear for her safety, her self esteem, and the impact of her school experience.
We plan to appeal the IEP (though that will take forever since school gets out this week) and we hope to get more information from her doctors that may help her. 60 minutes of speech per week is not NEARLY enough to help her. She is functioning as a two year old even WITH 6 months of help from EI for over 4 hours per week. Not to mention everything that Dave and I do at home. What is going to happen when those services are pulled?
As you can imagine, we are incredibly frustrated and upset... again. We are doing everything 'right' to try to help our little girl, and with the exception of the EI staff, the professionals we are depending on keep disappointing us. We are still waiting to hear from the neurologist, though he did leave me a message this morning so I guess he has not forgotten about us. I returned the call as soon as I could, but he was not available. Sigh.
Anyway, thanks to all of you who were thinking of us and praying for us. I wish I had better news. I will update you with any news from the neurologist.