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 was thrilled that we got Josh to the Job Olympics event (the Special Olympics of job training skills at the high school level)! I was so excited that his teacher and Bob and Brett volunteered and came over with breakfast to help motivate Josh. It was such a treat for me to have help with him in the morning (mornings are particularly challenging with Josh). Really, I had the best morning. After they left with Josh all smiling and happy, my hubby decided to take me out to breakfast – VERY rare moment, but he was working from home and knew I had just experienced something worth celebrating.
During breakfast at Le Peeps (yummy), Josh’s teacher was texting me that he was doing great, and if it were up to her, he’d get two medals in the events he competed in – coin recognition and paper shredding. I was so happy and so relieved. He went for the first time last year, but it didn’t go as well and we chalked that up to his being assigned to a shredder that didn’t work properly.
So that you'll understand the magnitude of this, I'll explain. Throughout his school experience – elementary, middle, and now high school -- Josh has stayed behind for many of the school outings and events because he was having a bad morning, or because he wouldn’t get on the bus or the van, or because we made a decision that the trip was not a good idea for him. But this time, he was there and he had actually done the events he was supposed to do. Success! I could not have been more pleased. And all of this after having gone to the doctor the afternoon before and having it confirmed that he did indeed have a raging red ear infection. Wow! Super success!
And then . . . I picked him up at school in the afternoon. He was walking like a drunken sailor, which is something he does when he’s overly tired. I drove him home, and the fun began – diarrhea from his antibiotic for the ear infection. Until you’ve dealt with a six foot tall, 280 pound hairy guy who is severely mentally handicapped and has diarrhea, don’t judge me for taking a nose dive. Ha! If only that were what actually did it for me. Not even close. What I’m about to tell you goes in the category that my beautiful blogging friend put so perfectly in her morning blog today “Unshareable Thoughts Shared.”
Here it is – I took a nose dive and wound up having a downer day because my son walked out without a medal around his neck. RIDICULOUS! I know right? I’m embarrassed to even talk about it, but I know myself well enough to know that once I do, I’ll be able to laugh about it. Seriously, as the afternoon progressed, I watched his classmates – special ed students who function well enough to have a facebook page – as they posted pictures of their medals. You could feel their excitement and pride with every comment that was posted as of result. I am so proud and love each of them dearly.
But again, Josh came home with no medal. It is one thing when you first discover that your child will be different than his typically developing peers; it is a whole different feeling of despair when you realize he can't even keep up with the others in his special education class. This has been the case for a very long time. Mike and I have often discussed whether or not he could have even bigger issues than Fragile X Syndrome and Autism. Really? Is that even possible? I have yet to meet another boy with Fragile X Syndrome who is as severely affected as Josh. All I can say is that he is low functioning not for the lack of trying. He has been given every early intervention known to man -- countless hours of occupational, speech and physical therapies -- he’s participated in studies, he’s been taught by bright and caring teachers, he’s been exposed to many, many opportunities. What most makes me angry about my reaction to his not having a medal around his neck? I have spent his whole life trying desperately to have others accept him and love him for who he is. I am so disappointed in myself – not him – for not accepting who he is yesterday afternoon. He could care less that he didn’t have a medal at the end of the day -- he doesn’t work for medals, or candy, or money, or stickers or anything else that most kids light up for – he works for praise and love and kindness. What a God-given blessing!
And what is more ironic than anything? Just as I finished drafting this blog entry I received an email from his teacher which says “Look in his home folder today. He earned a 5th place in PAPER SHREDDING!!!!!!! This is impressive :) :) :)!” Ha!