Before I start, I have to make sure I say 2 things. I KNOW how lucky I am, even though I tend to whinge (best word ever that I learned from one of my favorite people in the world). James has his own challenges, but I do not think at all that he is, in any way, shape or form, a challenge. He and Johnny Drama are my world. I thank my lucky stars every night that I have them both.
Also, Tiny Miss, this post was written before you and I talked today, so PLEASE do not think I was trying to get off the phone with you, or hesitate to call me anytime, about anything. xo
Actually, make that 3. Sorry Tony, but because of what I managed to do today, there is a lot I didn't do. I know you'll understand, though, and pick up the slack for me. again. xoxo
I was feeling sorry for myself this morning. And guilty. Guilty that I watched James get on the bus and tear up, again, while I went back in the house and poured a cup of coffee, still wearing slippers. I felt like I should have been the one sacrificing, he goes through enough every day without me forcing him to be miserable for the hour before and after school, just so I don't have to drive across the city.
I decided to work out to take my mind off it, and it helped a lot.
Then I had an even better idea. I was going to sacrifice my own comfort in order to accomplish something really big this morning.
Anyone who knows me, knows that above all else, my biggest fear is talking on the phone. I can't do it. I would rather drive 2 hours to have a 15 minute conversation than just talk on the phone for 15 minutes, even with my own family. I would rather speak to a room of 100 people than talk on a conference call to 3 (anyone remember how nervous I was for city council testimonies? Yes, talking on the phone is THAT uncomfortable for me).
I would rather do almost anything than talk on the phone (except hold Johnny Drama down while he gets stitches. I did that once and we both were traumatized. The security guard thought Johnny was being tortured, and the people in the ER waiting room were all awestruck and horrified when they finally saw us re-appear, sweaty and tear-stained. If there is a next time, it is agreed that Tony will bring him. I will even call someone and stay on the phone the whole time they are gone.)
There are too many unknowns on the phone. I never know what to say. When I do say something, I'm always afraid it came out terribly wrong and the person I'm talking to will get the wrong idea. Without facial expressions to guide me, I don't know when I'm crossing the line.
I go to great lengths to avoid phone conversations. Texting, email and facebook conveniently allow me to avoid talking on the phone 99% of the time.
So, this is who I am. I'm not proud of it, but it's me. Back to today.
I'm on the board for Boston Public's School's Special Education Parent Advisory Council, and I offered to check SPEDPAC's voice mail for messages from families that might need assistance. The mailbox was full with over 43 messages from parents who have no answers to their varied issues and concerns.
So, I fought against every instinct I had, and I picked up my cell phone. I called them ALL (well, all except the 3 in Spanish, and the 2 others I knew were way of my league. I was smart enough to pass them on to the appropriate people.)
I left messages for those who didn't answer, and gave them MY cell number. I told them they could call me anytime. And I meant it. I am now expecting calls from people I have never heard of before, and they could come at any time. And I will have to answer. That makes me incredibly uncomfortable, but at the same time, it makes me feel hopeful. These parents, who left a message on an automated voice mail asking for help as a last ditch effort hoping someone will listen, will hear a message from a real person telling them they want to help.
For the ones who did answer, I asked them about their children. I asked what age, what school. I asked what was going on. I asked how I could help them. I suggested they come to the general meeting tonight and share their voice. I told them to find me so I could meet them. All of them.
Like I said before, I know how lucky I am. I have the most amazing family and support system, and I don't know many other parents (of children with or without special needs) who have all I do. I decided to get out of my comfort zone a little bit to offer that support to others.
I know it doesn't seem like much to hear for many of you (yea, big deal, she made a few phone calls. wow.) But for me, it really was HUGE. And by doing it, I gained more than I ever imagined I could today, and I already decided I'm going to offer to check for more messages tomorrow.
He runs to make his mind still, to organize himself and to get rid of the noise from this loud, confusing world. The more he's moved, the more he's introduced patterns and rhythm into his routine. Laps around the house are a daily ritual. He's made it more complex as he's developed, but the basics are the same. There is a pattern of movement -- specific foot patterns based on whatever song or chant he chooses to accompany the run, and he can not be stopped until he is ready to be.
This is James, and this is our story.
This is James, and this is our story.