(It has taken me a few days to draft this for you all. There was so much to discuss about the IEP, and our lives have been very busy of late. I'm sorry this update is long, but there are many good things to report. Enjoy!)
“Before we start this meeting, I’d like to say something. I hope you know that your daughter is an absolute miracle. In all my many years of being a physical therapist, I’ve had maybe one or two kids like Jenelle. I know that I should never put limits on a child, but when I first met Jenelle 3 years ago, I was convinced there was no way she would ever sit up, no way she could ever stand, and I certainly didn't expect she'd ever walk. Jenelle is an absolute miracle!” ~ Jenelle's Physical Therapist Sarah
An IEP meeting (Individual Education Plan meeting) is a meeting that takes place with teachers, parents, therapists and advocates where a n specialized education plan is discussed and put in place for a child. Every three years, a school district will "re-evaluate" the child in all areas of service, and then hold what is called the "Tri-Annual" IEP meeting. Jenelle's Tri Annual IEP meeting was held on Monday, September 21, and lasted 4 and a half hours. Jenelle's Tri Annual IEP went very well and all of Jenelle's current services will remain in place for another year. After discussing services, we reviewed each of her annual goals, and replaced the ones she has met with new ones. At times it got emotional when we acknowledged how much Jenelle has achieved in the last three year, and other times it was humorous when we discussed Jenelle's unique personality that is beginning to blossom.
So, what has changed with our girl in 3 years? Jenelle has many scattered skill levels. It is hard to pinpoint an exact age of development, but for the most part her scattered skills range from 3 months to 3 years old. By far the biggest changes were with her eating and gross motor skills. Jenelle has almost fully met all of the skills needed in Physical Therapy (gross motor skills) to qualify as having full independent function. She sits up, stands, walks with ease while using a walker at school and is slowly being taught how to use a cane. Once she has mastered stairs and uneven surfaces, Jenelle will no longer need Physical Therapy. Her therapist estimates we will achieve that sometime before her next Tri-Annual IEP. Jenelle is definitely showing consistent weakness on her left side. Although her MRI scans show no evidence of brain bleed, she consistently acts like a child who might have suffered a stoke at some point in utero. Her other biggest achievement - food. Food is a huge motivator for Jenelle, and was mentioned many times, by many different therapists. This kid loves to eat, and is progressing nicely and even mastering the use of a bent spoon. While we are no where near being independent from her g-tube, the changes in her diet and her ability to eat more table foods is comforting and makes our daily life a bit easier. (I no longer have nightmares of us having a major earthquake and me running out of jarred baby food or formula!) In all, Jenelle's gross motor skills have progressed from the developmental level of a 6 month old, to that of an 18 month to 2 year old.
The smallest area of improvement belongs with her fine motor skills. While I was hoping for larger improvement in that, Jenelle's fine motor skills have progressed from the developmental level of a 1 month old to the development level of a 3 to 6 month old in fine motor skills area. She ranks poorly on this mainly because she refuses to use her hands, and her inability to speak. Once they explained in more detail all of the things that need to be met with fine motor, I understood why she scored so low. At our last appointment with Dr. Shields, I asked if we were beyond finding verbal language for Jenelle now that she is older than age 5. Dr. Shields felt that due to Jenelle's delays, and her significant improvement since obtaining seizures control, it would be wise to give her until age 7 to find some spoken language. If after age 7, Jenelle still does not have any spoken words, it would be very unlikely that she will ever be able to speak. While at this point it is a long shot, at least there is some glimmer of hope. Dr. Shields felt it would be best to start to concentrate more on teaching Jenelle how to communicate with assistive technology,and her school has already started this a year ago. When I informed the IEP group of Dr. Shields' recommendation on the speech, they were relieved to hear his opinion, and decided to continue her speech therapy another year instead of dropping it altogether based solely on her age.
With every report from every therapist and teacher (PT, OT, Speech, Vision, PE, and Orientation and Mobility) I heard a lot of similar things; Jenelle is a beautiful and determined little girl who is very social, very busy and will do anything for food. And of course, as Murphy's law would have it, two days after Jenelle's IEP where I told the team it had been months since we'd last seen a seizure, Jenelle had a grand mal. Her first in many, many months. So far, we are watching things carefully and I am chalking this one up to maybe the molar issues. In all, Jenelle continues to do well and we are so blessed to have her involved in a wonderful program at school and through our County Department of Education.
Once we were finished setting goals for the coming year, my brain was mush. I couldn't believe the meeting had taken over 4 hours, but really it all went quickly as it was so fascinating to hear about all the wonderful things Jenelle can do. I left feeling very inspired and very hopeful for our little girl. As mentioned at the beginning of the IEP, Jenelle is an absolute miracle. We are so blessed to have her in our lives.
Thanks for the continued thoughts, prayers and support. As always, I'll keep you posted!