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.
For some reason, I seem to get hints from my universe to take better care of myself -- me, the carrier who cares for the teenager with Fragile X Syndrome. These karma-type things usually happen in threes, and yesterday was no exception.
I am about to discuss my downer day yesterday, so for any Mom’s raising FX kids who are squeamish about hearing despairing things later in life, please exit this blog and move on to a brighter, more positive place in your world.
I have been doing a lot of reflecting on my marriage lately. My husband’s dedication and love for me, his Fragile X carrier wife, and Josh, our son who is severely affected with Fragile X Syndrome and Autism, has been unwavering and simply amazing. Sometimes I get caught up in the day-to-day challenges and lose track of making sure he knows how important he is in my life….not just his paycheck, but HIM and what he adds to this family.
When I started this new blogging adventure in December, I committed to myself that I would write something at least once every month of the year. So here I am on the very last day of February putting my fingers to the keys. It's not that I don't enjoy it; I do. It's that I don't want to write until I have something positive to say, and I want it to always be a relevent journal entry. Since I have found myself plunged into advocacy work this week, I believe that the fog has lifted and I found my relevent topic by default.
Before, during and after the holidays, I watch others around me rushing around to get things done -- find the perfect gifts, decorate the inside and outside of their homes and offices, plan menus, attend parties, mail Christmas cards, stand in long lines for pictures with Santa; and the list goes on and on. For our family the holidays have evolved into a beautiful moment of simplicity.
Okay so, the Joshman is verbal (some boys with Fragile X are not, but we worked very hard and paid speech therapists lots of money early on to make it happen). While he can say almost any word in the English language, and some Spanish as well thanks to his girlfriends at the grocery store, he has only about a fifty fifty chance of saying the right thing at the right moment.