Sunday, August 12, 2012
Ever since Josh was diagnosed with Fragile X Syndrome, people have told me that transitions will be difficult for him. At school, moving from one activity to another, from one room to another, all of his transitions were difficult and needed to be planned and prepared for each time. More times than not, a visual schedule was used and everyone on his team was onboard to help him with it. Same thing at home, we all work together to carefully move Josh through his day and make transitions easier for him.
Not one single person along the way mentioned how difficult transitions would be for ME! So many transitions along the way -- baby to preschool; preschool to elementary; elementary to middle school; middle to high school -- all requiring IEP meetings, talking to children and adults about Fragile X and encouraging them to embrace Josh and help him through the day -- just a lot of stuff; but all of those transitions pale in comparison to this one -- high school to adulthood. OMG! How did this happen? My baby boy is a freak'n man! Not just any man, but one who needs one-on-one assistance 24/7 and he will more than likely need that for the rest of his life! How the hell do I wrap my brain around that kind of transition? Really God? You think I can handle this? Oye, well okay then....let me pull my big girl panties up and get on with it.
No more than others I know, but having a child with special needs has required me to be somewhat of an expert in all things Josh -- medical, educational, extracurricular, legal, legislative (just to mention a few) -- and to build relationships of trust and mutual respect with everyone who is involved in his existence. With trust comes a certain degree of assumption that everyone in the system will automatically do what the law requires and/or what is in the best interest of my child -- in this case, educate and support a student with disabilities through the year of his/her 21st birthday. People I trusted (and with no warning) decided to "exit Josh from school services because they no longer felt they could teach him; that he took an inordinate amount of time to teach something and so his services would stop in May." HELLO!? Is this a nightmare? Will I wake up and discover that people who had told me not to worry because they would always look out for Josh, really didn't sit around a table and discard my son as though he was undeserving of services that many have fought for through the years (IDEA legislation).
Fast forward through conversations with an attorney, hiring THE best educational advocate (thank you Erin!), working with the principal to eliminate the team who did this and put together a new one -- Josh starts in the Access Program for 18 - 21 year olds this coming Thursday. We'll see how it goes. Unlike his special needs peers, he was not afforded the opportunity for "transition services" to prepare him for the adult program (and neither was I!). I'm praying more this year than ever, and I have great hopes for my son.
Meantime, back to ME. This transition, this year has sucked for the most part. We had to go to court and deem our son incompetent and request to be his guardian for the rest of his life. I cried as I listened to Josh's attorney tell the judge about Josh and paint the picture of his inability to take care of himself and his finances and that there was no reason to believe that would ever change. I cried when the judge turned to me and said "God bless you for your love and devotion to this young man. God bless you as you help him transition to his life as an adult. Permanent guardianship granted" (insert gavel pounding and me jumping)! Damn! Okay, I'm awake now.
How have I handled this transition that pales in comparison to all others? The best I could. In the end, that's really all we can do. Emotionally, I took a serious nose dive and am going through another phase of grief. And of course, that causes weight gain which causes more emotional termoil. But through all of that, I remained steady at the task of helping Josh with his transition, and getting his services back in place, and being successful at his graduation ceremony. I went outside my comfort zone and when asked, I participated in a video being produced by KU Medical Center to help other parents with the transition to adulthood (I'm sure it will air in theaters close to you soon, lol). I attended the 13th International Fragile X Conference in Miami, and absorbed as much information as I could about the transition to adulthood for Fragile X boys. And last, but not least, I attended a workshop for ME, a carrier of Fragile X, to learn about the health issues I am and will face along this journey. That has lead to an opportunity for me to participate in a carrier study at Rush in Chicago (lookout Jeanie, I'm coming your way!) -- and, I learned of an opportunity for Josh to participate in one of the promising drug trials for 18 and older full mutation, severely affected adults. That won't be an easy transition, but what the heck.....I'm on a roll!
So the bottom line, transitions suck and they are uber difficult. But I like to think I am a better, smarter, stronger person for having made it through this so far. I'm back on my diet, I'm back-to-school shopping for Josh, and I'm finally writing a blog entry! I'm fully participating in Josh's transition as he takes on the adult world and creates a happy healthy quality of life for himself, and thereby for ME. We can do this Joshman! We can!