Friday we had our "first" official meeting with the Tustin Unified School District to begin Jenelle's IEP Process. In the next two months (and hopefully before her 3rd birthday in October) the District will have their own assessment team of various therapists, psychologists and specialists evaluate Jenelle to determine what services she will need. The meeting yesterday was to discuss this and sign authorizations allowing the District to proceed. I've heard from other special needs parents, and from my sister (who works in special education) that IEPs can be very intimidating. This meeting was not, but it was an eye opener looking at all the issues we need to address for one little girl.
Once the District has done their assessments, we will have the "official" IEP meeting to discuss the results, determine Jenelle's goals and "agree" on services to be provided (speech therapy, occupational therapy, physical therapy, pre-school, vision therapy, etc.) As I've mentioned before, the local school district takes over funding at age 3, and therefore determines what services and where for Jenelle. Being that Jenelle's issues are pretty significant and her needs are many, we literally authorized almost every type of evaluation you can imagine. Its going to be busy these next two months.
Fortunately last night I went to the our local Epilepsy Parent Support Group meeting and listened to a Special Education Attorney give a presentation on IEPs. Thank goodness I work in a law firm, because he spoke in terms I could understand. What a valuable presentation and what perfect timing! Speaking of which, I wanted to relay that our local Epilepsy group (the one which held the Freedom Walk last year) has gone though some changes. A couple months ago, this group broke away from the Epilepsy Foundation of Southern California to become their own "independent" group now called the Epilepsy Alliance of Orange County. This group will operate completely on its own and gets no money from the Epilepsy Foundation of Southern California nor the National Epilepsy Foundation. Becoming an "independent" organization is the first step to becoming and/or applying for affiliation with the Epilepsy Foundation (basically they have to prove themselves financially before being approved.) So be warned that you might be getting emails from me in the future about garage sales or car washes being held to raise funds for the Alliance, and of course we are having another Freedom Walk in May. Basically nothing has changed with the group - same services, same wonderful presentations, same support group - just a different name, and a new effort to raise money to help provide local services to those affected by Epilepsy in Orange County. The group first event is a free Epilepsy Seminar the first weekend in November at UCI for parents and doctors. Brett and I are very thankful to this group for all they done to support us in the past two years, so we'll be supporting them wholeheartedly. Please let me know if you are interested in making donations to the Alliance. I'll see it gets to the proper people. ;) I'll be linking to their web site when it is up and running in the near future.
And of course, Jenelle is doing very well right now. She has been "seizure free" for quite some time, and we aren't exactly sure why. We'll take it though - its so very strange to think we have gone from 20 to 40 seizures a day to none. I keep expecting to find her seizing when she is staring off, but usually when I call her name to check, she will turn to look at me, or give me a sign that she is there. She seems to be benefiting from the break in seizures, and those who have seen her recently they tell me they really notice a difference in awareness, body control, and alertness. I failed to mention in my last update that Jenelle has also had a growth spurt, which could be the reason for the loss in weight. She has grown 2 inches, and is now almost 36 inches long. She is doing well with the slow increase in calories and is very happy all the time.
It is so nice to send positive reports - I'm glad you all enjoy them too! Thanks for the continued prayers. I'll keep you posted!