One day my neighbor came over for a glass of wine, and cried when she saw the inside of my house. Literally. She was a “newer” neighbor and new to the neighborhood (we, ourselves, were new to the area by a little more than a year) and it was one of the first times that I had her over for a glass of wine. She was crying because she finally realized how much harder I had it with my two kids than she did with her one toddler. No comparison! And a no-brainer! But this was the first time she effectively got to see the inside of my house—and noted the alarms on the doors and chains on the two sliding glass doors—as if we had to “lockdown” the house and “wire up” the alarms before we could even go to sleep at night. And she was right.
What was even more interesting was that I had already told her, via a long phone conversation, about Meghan and autism and what our days were kind of like. But seeing is believing, I guess.
She was crying because it had finally sunk in, and it all seemed so alarming to her to “see” that we had to use chains with locks attached to our doors and steel locks on our fenced-in yard gates, that could only be unfastened by a key. She told me something that I had remembered, and would never forget: “Look at how you have to live! You know, no one appreciates what you have to do for your kids and I’m in awe to you, really! I think that you are an exceptional mother and I feel for you, I really do!” And she was fighting back tears while saying this to me.
This form of affection and attention certainly caught me off guard. I was not used to anyone understanding what our life was like living with two autistic kids—let alone, telling me. (And actually, Meghan was the only reason why we had to use chains and alarms on all of our doors and gates because she was prone to bolting away (and bolt being the best word to describe how quick she could escape) and we had nine ponds in our development to worry about, as well.)
It was one of those moments—like an ah-ha moment—where I, too, noticed how we actually lived from an outsider’s point of view. Like, Oh yeah, I do have chains on my doors…isn’t that’s normal? I immediately felt like I wanted to rip off the chains because they suddenly looked so offensive to me, like we were freaks or something. And no wonder why the other neighbors stayed away. Ahhhh-haaaa!!
I’m sure it took a lot for her to say that to me—hence the tears. And she also told me that she would help me whenever I needed it—like a good friend and a neighbor would do for another...
Let me just say that I was not used to hearing that from anyone. And I, too, had to hold back the tears. And previous to that day, my only friends were those who had special needs children of their own, and who not only knew how I lived, but were also the only ones who could relate to my day-to-day life—and who I also equally respect and admire! ;)
I was reminded of this story because Meghan is home for the long weekend (happy Memorial Day!), and on her first night home, we had a cookout (celebrating her birthday) and an outdoor fire, which she enjoyed. But getting her to stay inside during these last two nights was like wishing we still had those chains and locks on the doors.
Progress, or regression?
Though I trusted she would not venture far from the balcony or deck, it still worried me that she was so easily going outside of her own free will. We finally had to say “enough” after 11:00 pm, and send her off to her room—because vigilance is exhausting!! And yes, it was also long past her bedtime (all of our bedtimes, actually), but she still had some pent-up energy to burn, so we allowed her the extra time.
I know that Meghan has come a long way from that fleeing 2,3,4,...7,8,9…12 year old little girl that she once was; and now that she’s 14, she has matured (progressed) in many ways:
She will sit and attend to activities longer than she had before (yes, we’re proud);
she will no longer try to bolt away as she has done twice before (oh, especially proud), and I don’t really have to hold her hand like superglue every time we go out somewhere—but I kind of do anyway, because she has gotten used to this behavior, and now clutches her arm in mine without my asking.
She still does, however, have those “excitable” moments where she will be a bit more hyperactive and move about the house in a rougher way; hence, a once mentioned broken bed…or two.
But, still, a huge improvement from the “lockdown” way of life that we once had lived…. And that I must try to remember this every time she’s home, because you can so easily forget these once remembered moments in time.
The voices in the dark
4 days ago
4 comments:
thank you thank you thank you for recording this memory. I am stealing her comment for myself. Very, very few people get to "see".
The day to day coping and tools to be able to manage is really the story of our lives, isn't it.
Another great post, Holli!
Hope you are having a lovely weekend!
You really are amazing.
I got chills reading this remembering having to do the lock-down thing with Nigel because he was a bolter when he was younger. Those are the sorts of things I tend to block out of my memory! Glad to hear that Meghan has gotten better with that. Somehow, we get through it.
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