Curtis had to work all day yesterday, so on the spur of the moment I decided to take the kids and Jenny's boyfriend to Sea World. The season pass was the same amount as a day pass so we got that and will try to make it down there this summer a few times. I forgot that it's a nearly 2-hour drive! Ugh! But the kids were great on the way there and we pretty excited. We rarely go anywhere except our local zoo (which has some monkeys and a couple of lions) or the nature center.
We got a double stroller right off since Anna fatigues so quickly and Dominic runs off. Jenny and Chris looked so cute, I could almost picture them with their own family (hopefully not for a long time, lol!).
Dominic loves maps and he studied this one quite closely, lol!
He is so photogenic.
There were two really cool highlights to our day trip. The first was getting to feed the dophins. Anna wanted to stay with the dolphins all day, it was very hard to get her to leave that area.
The second was the Shamu show. We got there about 10 minutes early and both little kids started crying. Why? Dominic didn't want to get wet and Anna was scared. I'm used to making a scene out in public. We sat in the very back row, high up, and got settled in.
Right behind us was an area for those with disabilities and shortly a girl in a wheelchair with her mom and aunt (?) sat behind us. Anna has a bit of an obsession with wheelchairs and kiddos who ride in them. Soon the questions started... "Mommy, why does she look like that? What's her name? Why is she in a wheelchair?" I said to her, "Anna, why don't you ask her?" So Anna turns around fully and asks, "What's your name?" to the girl. She was not able to respond, she had a trach and appeared to be fairly medically complicated. So I said to the mom, "This is Anna. She would like to know your daughter's name," to which she responded, "This is Caitlyn." Anna starts talking to Caitlyn while I explain to her mom that Anna has autism and may ask some inappropriate or uncomfortable questions. This mom and I made eye contact, and in those fleeting seconds, a lifetime of special needs appointments, heartaches, testing, therapy, worries, and hope passed between us. There is a special bond among mothers who care for children with special needs and it only takes a moment to establish that connection. I also explained that we are continually working on Anna's filters... what is socially appropriate and all that.
The mom responded with a very profound statement:
"YOU are her filter."
I've thought about that a dozen times since then. It's so true. I am Anna's filter. I interpret the world for her, I recognize when sounds will be too loud, when a crying child will set off a meltdown, when she is about to lash out in anger and hurt someone. I recognize how to shift those moments into a silly song to distract her or to take a walk to clear her head. I am teaching her to recognize those clues so that she can take care of herself too.
The mom and I made small talk; they lived locally and came quite often to Sea World. The mom said that Caitlyn seems to like the Shamu show, that the music and lights sparkling on the water seem to get her attention. She said, "You know, I can't really know how much she understands but she seems happy here." I thought about how hard it would be to not know what your child was really feeling or understanding.
Anna LOVED the Shamu show, as did Dominic and Jenny (Chris enjoyed it too!).
Look at the pure excitement on her face!
I got two amazing shots of Shamu jumping out of the water!
After the show, we looked at the flamingoes and sea lions. This photo makes me a little sad because this is so indicative of Anna's attention. She is constantly on guard, looking around for small children who might be crying or loud. It's like she is constant alert and it makes her nervous system edgy.
We had a few moments of tough behavior (Anna wanted to push Caitlyn's wheelchair and got a little angry that she couldn't and walking through the gift shop to exit was also hard [btw, they ought to set up a separate exit for people with behaviorally challenged children]), but it was a pretty good day. Anna did end up crying for about 30 minutes on the way home saying that her eyes, head, and tummy hurt and she wanted to go to bed. That is a classic aura for Anna, and I was worried she was going to have a seizure in the car but she managed through it. I think it was more an overload meltdown from the day than anything else.
I've been thinking about Caitlyn's mom. She had such a peaceful manner about her; when she shared why they come to the Shamu show, there was no sadness or wistfulness, just truth. I feel that I sometimes over-explain Anna, that it feels like I'm making excuses for her or diminishing her being by labeling her. I wish I could just let her BE. I have gotten better about not noticing other people noticing her and I am a good filter for her. But I have a ways to go to get to true acceptance.
Monday, May 18, 2009
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I loved reading this. I can relate to being a "filter" also.
ReplyDeleteI love the pictures and reading about your outing to Sea World. You are such a good mom and advocate/filter for your girl. I can so relate to what you wrote about just letting her be and not overexplaining. I always struggle with whether I owe anyone an explanation or not.
ReplyDeleteI am NOT a mother to a special needs child. But I do have a over active child who does behave VERY inappropriately in public. So I can understand the stares. The other day though,my son and daughter,myself were walking thru the store. We stopped in the can goods aisle. There was a lil boy close to us. As I reached to grab a can of corn,he begin screaming at me and scratching me. At first I was shocked and then I realized,he has autism. My aunt worked with children who have this disease for years. We grew up around them and learned to handle the situation better then most. His mother came running,tears in her eyes apologizing profusely. I just looked at her and said,"no harm done." As I walked away my son pointed to the family and said look and the momma was hugging her son and quietly crying. I dont know what its like to be the parent of a child with a diagnosed disorder but I do understand what its like to need understanding from strangers. I'm glad you had a wonderful day. All the minor setbacks are nothing compared to the rewards. Looks like you had fun and Im super jealous! :)
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