"Im starting to see my dream. The pictures flash like when someone takes a picture with a camera. But there's no person, and no camera. Flash, flash, flash. It's harder to see the pictures when the sun is up."
Charlie likes to sleep in complete darkness, no easy feat when he goes to bed long before the sun goes down. His shades are pretty good, but the four large windows allow it to creep in around the corners. Once, last fall, he got very mad at me because, "We go to sleep when it is the daytime and wake up when it is the nighttime and this just makes no sense."
He's right, but I didn't make the bus schedule.
At Easter we went on a family retreat at our new church. I was initially skeptical, but was sold by the notion of no dressing sugar filled children up in layers of fluff to endure an extra long, extra full church service then try to take those hungry children home and make them wait we while I throw together something fancy.
Instead we had church in our shorts down by the riverside in the cool morning breeze. The day before was like a scene from a movie. A couple hundred people on the green, soft hilly grass. Someone playing guitar with a guy beating on a djembe, people canoeing and swimming, bubbles blowing and kids playing. Talking, laughing, fun. It made me miss Austin. It felt like Austin. All that was missing was a dog with a frisbee and some teenagers with a hackey sack.
Charlie thought about God that weekend and told me that, "God must have two hands, that way He could make us both." I was drawn in by that beautiful, loving image and was thinking to myself for just a moment that Charlie is really growing things up, really thinking things through.
But just for a moment, because he then informed me, "And God made chickens so they could rule the galaxy!"
This notion has cracked me up for weeks now. I asked him once why we ate them, if they do indeed rule the galaxy. He informed me that this was part of their plan . . . once they are inside of us, the takeover can begin.
So perhaps vegetarians are saving us from a fowl future?
He also told me this morning that "My life is very hard." Unfortunately, the poor sweet boy is right about this. He gets so angry and he can't stop. He says, "When I am angry, it never goes away."
He has come so far on so many fronts, but his anger and rage are wearing us all thin. It is not a constant, but seems to pop up at moments that are supposed to be happy and fun, but out of the ordinary. I spent church on Mother's Day outside with a screaming boy and then Thursday I pulled a wagon of screaming boy through a parade at the girls' school.
He is so high functioning that I forget sometimes how much he needs structure, planning and control. Since I tend to be very spur of the moment and am all for spontaneous fun, I'm not always good at preparing him for what is happening. I think our busyness doesn't always work in his favor.
But there are three of them. Five of us. His needs can't always dictate our plans. The girls are learning so much about compassion and patience from having Charlie as a little brother, but sometimes I'm worried that his needs hold them back. So then I try to make sure they get to experience everything while limiting his world to the things he can handle and preparing him for the things that can't.
And then I am frequently told I look tired.
I am.
But I just have to eat more chicken and hold out until they take charge. Perhaps they can do a better job of it all?
4 comments:
Hey Gretchen, You probably don't remember me from BTBBC days, but it's pylesa. I just wanted to share with you how thankful I am that you've shared your journey with your family, and especially Charlie. I've followed along since you started your blog because I felt a connection with our kids that I didn't know how to explain. Kairi didn't have the exact same struggles that Charlie did, but the anger -- oh the anger. And there were always other things that you mentioned that reminded me of her. Last summer was the hardest we had ever experienced, and finally my husband agreed to us talking to professionals about it. She has a sensory processing disorder, as well as Asperger's. This last year has been such a roller coaster for our entire family, but when I've pulled up your blog and been able to see that we're not the only ones going through a similar journey, it's been a comfort.
Your words today are what made me finally say hello. I also worry about the both my children and whether or not I'm able to meet both their needs. The logical part of my brain says that I just have to do the best I can to balance it out, and to trust that God's grace will take care of my mistakes so that neither or my children will be irreparably harmed by them. But my heart is often twisted into knots because I constantly question my decisions.
Thanks for sharing your journey, and remember that you're not alone.
~Steph
Thank you so much, Steph. I do remember you, even though it has been quite some time.
It's funny, but when I published this morning, I almost left all that part out. It felt whiny and rambling. I'm now glad I left it there. I'm glad my thoughts helped you.
Between Charlie and Dixie both being special needs in incredibly different ways and Melody being GT(an entirely different special need) I feel like I'm being drawn and quartered some times. And yet I think that having to come second or third sometimes teaches them even more than the times when they come first.
I hope your journey finds peace along the way.
Please do not concern yourself that Charlie's needs will hold the other two back.
Mike Kelly's needs did not hold anyone back it that side of the family. Everyone did just fine, and maybe they were even better for the experience.
That was Papa; forgot to sign it.
Love ~ Papa
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