Making forward movement. Small forward movement, but movement nevertheless. This week I took two baby steps toward RJC's adult future.
Baby step 1: I set up a meeting with...well...everyone. Our school system, her current Outplacement school and Department of Developmental Services. Yep. It is official. I can no longer pretend to ignore the fact that she is not going to be able to stay in school and I took the plunge and made the call to get the ball rolling. I am both pleased with myself and sick to my stomach.
Baby step 2: For whatever reason, trying to get SSI for her has been a ridiculously slow process. While I was just at the point of considering who I can call to get some help, she was approved. Of course, it couldn't just be a simple process. I received a letter that she was approved but that I needed to take her to the Social Security office in Hartford. UG. Really? Smart me - I called to be sure this was a necessary step and lo and behold it was not! The rep on the phone found the form they thought I needed to complete. Thank goodness my need to avoid any potential issues with RJC pushed me to make a phone call.
So there you have it. I have made some forward movement. Reading this over it is almost pathetic that I am sharing this somewhat proudly. You'd assume as a responsible parent I'd be doing this stuff. I assumed I'd leap right into it. What I am finding is that there is a great deal of emotional stuff that goes along with my baby turning 21 and it makes me want to crawl into my bed and put the covers over my head.
Forward movement is progress. Progress is good. So, I'm sharing.
Saturday, October 20, 2012
Monday, October 8, 2012
A Community of Strangers
We are a community of strangers. We do not know one another but we can recognize one another.
This week we're vacationing at Disney World. Yesterday we had a long, hot day and though we rested for a while in the afternoon, by the time the fireworks were over it was late and RJC was done. We made our way through the crowd to the bus area where we waited for our bus to take us back to the resort. RJC is not one for standing, so she was sitting on the cement. The bus came rather quickly and the man in front of us helped her up. I thought it was a nice gesture and thanked him. Just my luck, by the time we boarded there were no seats. Let the screaming begin.
All in all it was pretty much just two long screams then she plunked herself down on the floor of the bus. The same man leaned over to me and asked "Are you ok?" I smiled, said something like, "Yeah, she's just holding on by a string" and he replied "At least she's still holding on." Again, I politely smiled. I did think it was interesting that he didn't ask me if SHE was ok, since that's the usual question, but I was tired and mostly focused on keeping RJC in check.
The ride felt endless and I caught this man's eye again. He nodded, I nodded. Then as I was looking around to see where we were and hoping we were reaching our destination, I saw his son. He was in the eight to ten year old range and was diagnosed with Down's Syndrome.
It all made sense. Of course he helped her up. It was instinctual. Of course he asked if I was ok. He'd been there. He knows that "walking on egg shell" feeling when you're just praying silently that the screams stop there and don't explode into a full blown tantrum with a bus full of people.
We are a community of strangers and we're there for each other. Even when we don't realize it.
We made it with no other issues back to the resort and when we got off the bus we said our goodnights. He went his way with his family, I went mine with RJC. He probably did not give us another thought but I sure silently thanked him on our walk back.
There is something about knowing that somebody "gets it" when you're in the middle of it. There is something comforting about our community of strangers that helps us to plow on. You don't need to have a child with specials needs to be in that community. You just need to understand and be compassionate. We need our community of strangers to make it through. So let me say now to all of you who are part of this community - thank you in advance for those times that you help me...or somebody else...get through those moments. Thank YOU for being a part of our community of strangers.
This week we're vacationing at Disney World. Yesterday we had a long, hot day and though we rested for a while in the afternoon, by the time the fireworks were over it was late and RJC was done. We made our way through the crowd to the bus area where we waited for our bus to take us back to the resort. RJC is not one for standing, so she was sitting on the cement. The bus came rather quickly and the man in front of us helped her up. I thought it was a nice gesture and thanked him. Just my luck, by the time we boarded there were no seats. Let the screaming begin.
All in all it was pretty much just two long screams then she plunked herself down on the floor of the bus. The same man leaned over to me and asked "Are you ok?" I smiled, said something like, "Yeah, she's just holding on by a string" and he replied "At least she's still holding on." Again, I politely smiled. I did think it was interesting that he didn't ask me if SHE was ok, since that's the usual question, but I was tired and mostly focused on keeping RJC in check.
The ride felt endless and I caught this man's eye again. He nodded, I nodded. Then as I was looking around to see where we were and hoping we were reaching our destination, I saw his son. He was in the eight to ten year old range and was diagnosed with Down's Syndrome.
It all made sense. Of course he helped her up. It was instinctual. Of course he asked if I was ok. He'd been there. He knows that "walking on egg shell" feeling when you're just praying silently that the screams stop there and don't explode into a full blown tantrum with a bus full of people.
We are a community of strangers and we're there for each other. Even when we don't realize it.
We made it with no other issues back to the resort and when we got off the bus we said our goodnights. He went his way with his family, I went mine with RJC. He probably did not give us another thought but I sure silently thanked him on our walk back.
There is something about knowing that somebody "gets it" when you're in the middle of it. There is something comforting about our community of strangers that helps us to plow on. You don't need to have a child with specials needs to be in that community. You just need to understand and be compassionate. We need our community of strangers to make it through. So let me say now to all of you who are part of this community - thank you in advance for those times that you help me...or somebody else...get through those moments. Thank YOU for being a part of our community of strangers.
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