Last Spring, on May 21st, I sat through a four hour meeting, called an IEP meeting, at the school district. This meeting had probably two dozen people at it, and was all about my Destiny. The meeting was excruciating, confusing, and as far as I'm concerned, a room so full of buearoCRAP that I was suffocating. It was during the tougher times for my girl, when I felt her slipping away with every seizure, every fall, every word forgotten, every heat stroke. I was still working at the time, though my heart was elsewhere.
Destiny's advocates moved mountains for me that afternoon as I felt salt pouring into a wound much deeper than the one made by a hip replacement, or any pain I have ever endured. The school, the accommodations, set in place that day were absolutely necessary for Destiny to be able to attend Kindergarten this year, and for me to continue to work.
Weeks after Desty's IEP, I followed my heart, resigned from my job, embraced my children with all my heart, and took on the responsibility and administration of the Ketogenic Diet for my daughter, which has very literally brought her back to life, in many ways.
I am overcome with gratitude EVERY DAY for this good time the Diet is giving us! Maybe this good time will last forever - I pray selfishly every day for that too. However, if it does not, I do not want to regret anything. I am bound and determined to cherish EVERY moment possible with both of my Kiddos. Being very different personalities, that looks different with Benny than it does with Destiny.
That also means that I refuse to disable Destiny. To the contrary, I want this child to meet and experience the world where she is at - I want to capitalize her abilities, to feed her soul with love and confidence. I don't know, of course, but I'm choosing to believe that the higher she is on life, the smarter she is, the happier she is, the harder Dravet will have to work to bring her down.
Getting to the point!...
I have officially decided to homeschool Destiny for Kindergarten! I will leave you all to your eclectic array of reactions, knowing some will be harsh judging and some will not be surprised and even allow me the benefit of the doubt that I'm doing what's best for Destiny and I. And a handful of you are very relieved that I finally have the courage to follow my heart again and finalize this big big big big decision ;-). Either way, I love you all (especially my newly unmasked KE spies! ;-), and please stay tuned for many many more adventures of this BoulderMomOnWheelZ!
My boy starts 2nd grade tomorrow, and I really believe it'll be a great year! His school really went to great lengths to place Benny with the best teacher for him (& his best buddy!). I'm so excited for him!! I'm so proud of him!!!
Desty starts Kindergarten next Monday!
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5 comments:
Congratulations on such a wonderful decision for Destiny! We are starting our 2nd year (1st grade) of homeschooling this year for my Nina. Mony is doing great at Jr. High with talented loving teachers (what a blessing) but I've gone through the IEP hell you described and then homeschooled Mony for 3 years. It's hard but SO worth it. I hope you get loads of support and you don't have to deal with too many moronic comments:) thanks for sharing your experiences. We are managing Mony's seizures with drugs at the present, but the diet is often on my mind. Keep taking care of those sweet babies and doing right by them! Cherish every day! Love you.
Rounds of applause from this Momma!!! Wishing your family all the best:)
THANK YOU both, very very much!
How exciting! I am always here if you have any questions or need support.
Well done! And good for you for trusting your wise mama instincts.
The truth is, homeschooling is loosing it's stigma. Homeschoolers are representing a growing percentage of students in prestigious collages and universities.
You two are going to have a wonderful journey!!
LEAD ON!!
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