Tomorrow will be the last planning I.E.P. meeting for Josh in the Blue Valley School District (Individual Education Plan -- required by legislation for all children with disabilities through the age of 21). It is a time to look back, see where we've been and where we had hoped to be at this point. It is also a time to FREAK OUT ..... I mean, advocate for a successful, fulfilling adult life for my son outside of the school system.....yep, that's what I mean.
For my curiosity and to prepare my thoughts for tomorrow's meeting , I requested some documents that I had written for one of his early elementary I.E.P.s. Wow! They were exhausting to read. First, it reminds me of magnitude of the yearly advocating I have done along the way, especially in elementary school and again in high school; and secondly, when I read the long-term vision for what I had hoped, we're not even close.
When you start out with a child affected by disabilities, you really have no idea what they will be capable of, so you charge ahead on the premise that the more early intervention they have, the more they will be capable of later in life. I'm attaching a picture of the document That I wrote when Josh was in second grade. A lot of the items in it will be very familiar to my friends on similar journeys. I have been advocating since 1995, before the internet, before facebook, before Community Support Network, before Fragile X was even a twinkle in the eyes of many of my FX friends.
I am slowly coming to the realization that there is NO time to FREAK OUT! It's time to rewrite Josh's life and our goals for him to thrive and be happy as an adult. At this point, all I really care about is his happiness, and that he will be taken care of in the likelihood that he outlives me. This is my simple, yet daunting, prayer for today. I hope my friends and family who pray will pray for us now like never before. Those who don't pray, a positive thought and/or words of encouragement would be very appreciated.