He is doing some crazy verbal gymnastics lately. It's sort of scripting, sort of echolalic, but altogether unique Leelo-speak. It's pretty cool.
Leelo has always loved to have us sing or speak back the lines he feeds us. It's one of the ways he communicates and shows affection and gets reassurance. Lately he has been taking scripts from favorite books and verses from favorite songs, and making them completely his own. He has done this to Goodnight Moon, inserting his own real and nonsense words -- nonsense words when he needs something that rhymes with the first word he chose, but can't come up with a real word off the top of his head. So we have gems like, "Goodnight puppies, goodnight cuppies."
It's amazing to watch, amazing to hear.
He is also playing with the names of all the Thomas trains. Tonight, while all five of us were having quality postprandial trampoline time, he spent several minutes saying goodnight to all the engines he could think of. Then he went through the entire list again, changing the starting sound of each name. We all said goodnight to Seter Sam, Suncan, Dercy, etc., as ordered. Very amusing.
Probably the part I like best is his singing. Tonight I tried to have him watch some YouTube videos post-bath, pre-bedtime books, to help calm him down. He was not impressed by my choices, because he wanted to provide the evening's music himself, with "There's a Little Wheel Turnin' in My Heart." Which he has sung before.
EXCEPT he incorporated something different from his environment, into every verse.
Shia the cat walked by, and Leelo sang, "There's a one cat meowing in my heart, miaow miew, there's a one cat meowing in my horn." (Heart and horn are interchangeable for some reason.)
Then he looked around for something else to sing, locked onto my most prominent facial feature, and sang, "There's a big nose honking in my heart, honk honk, there's a big nose honking in my horn."
For his final verse, Leelo chose something from the next step in his bedtime routine, and sang, "There's a daddy reading in my book, book, book, there's a daddy reading in my book."
Leelo was very snuggly, very affectionate, very present during all the encounters above. Yay Leelo. I love our intense interactions. Verbally, you're going places. And I can see the big wheels turning, the ones that are going to take you wherever it is you're going.
For contrast, consider me thinking I could take all three kids to church by myself this morning. Because I have the power of optimism!
Note to Myself Past: YOU CAN BE A REAL DUMBASS.
Today was the first day of Iz's Religious Education class. Exposing her to our congregation's pan-theologic, non-judgmental approach is important to me, and I did not want her to miss anything. I also didn't want Seymour to miss the mountain bike trek to which he'd been invited, and which was scheduled for the same slot as church.
I calculated the risks, and decided they were acceptable:
- I've been having great luck with supplying engaging activities to keep Leelo calm in public, and thought perhaps my son would be able to tolerate the five minutes from the welcoming until the children were sung out to their classes.
- If Leelo found five minutes of service intolerable, then we could leave. Iz knows half the people in the congregation, so she wouldn't feel abandoned, and she also knows the routine for following the other children from the sanctuary to the classroom. Leelo and I could slip out and deposit Mali in the nursery. Then Leelo and I could find a nice quiet corner for his activities, or we could walk around the block.
- When the service finished, I could pluck Iz from her class lickety-split, and her siblings and I could all leave the building before its narrow hallways and small rooms became crowded with the ideologically sated.
- If something went wrong, then surely someone might help me, especially after I posted my essay on Being a Friend to Families of Children With Special Needs to the congregation's Yahoo Groups list and was sent many warm, supportive responses.
Thirty seconds into the service, Leelo was done. He had completed a lacing card, had no interest in anything else in my backpack, and announced his displeasure with blows and howls. Mali was also done, as evidenced by her proclaiming loudly, "I don't like this place."
Like fools, we flew. My heart, it sank.
Mali was happy to play in the nursery. When the children filed by the door as they were sung to their classes, she decided she'd like to try join the pre-K class. Off she went.
Meanwhile, Leelo and I wandered through the building, and found that it was entirely devoid of quiet corners. The Religious Education program had expanded over the summer, and needed every last chair for its participants. I felt happy for our growing congregation, and stressed that there seemed to be no physical space for us in their building.
It didn't feel right to leave and run errands, so Leelo and I trudged back to the nursery. We sat down at a table across from a couple of toddlers, and we all did our respective activities until Leelo was done. Which he indicated by thwacking me, hard, with an open hand to my chest.
There was still half an hour of service left, so we took a walk around the block. We ran across JP, which is always a treat.
When we returned to the nursery, Mali was there. She'd been bounced for reasons I could not ascertain, but which likely had to do with the defiance that has been getting her into trouble at her preschool. Or maybe they didn't realize that she qualifies for pre-K, that she'll be going to kindergarten in Fall '09. It didn't bother me that much, especially as her presence simplified my extract-and-escape logistics by one factor.
I didn't want any toilet issues to complicate our planned smooth exit, so I took Leelo to the potty. And realized that his last thwack combined with my scoop-neck tank top meant I had been parading around the neighborhood and building with a bright red handprint in the middle of my chest. Lovely.
Finally, service was over. I grabbed Mali's and Leelo's hands, and trotted to Iz's classroom.
She wasn't there.
I did three circuits of the warren-like building and classrooms, getting increasingly panicky as the number of people in the hallways and rooms increased, and as Leelo's unhappy noises escalated. As my eyes got wilder and my voice shakier, I asked several friends and acquaintances if they had seen Iz. None of them had. Even more surprisingly, none of them offered to help me find her.
Eventually -- and thankfully before Leelo's internal volcano erupted -- I remembered that Iz sometimes likes to climb the tree in front of the building. And that's where she was. And that's where I lost it.
I was so relieved to find her, had been bottling up so much stress from the beginning of the service until that point, that I started crying. Which was mortifying -- some UU's are pity vampires and I did not want to attract even more of their attention -- but got Iz down out of that tree immediately. A man that I didn't know approached and kindly asked if I was okay and if he could do anything. I told him that I was just having a bad morning. I hope I remembered to thank him.
Iz gave me her profuse apologies, which I accepted, and we all walked back to the car.
Although overall Leelo did fairly well during our botched church adventure, he won't be seeing the inside of that building again, not anytime soon. I'm not even sure I can show my face for a while.
In hindsight, I realize that I didn't ask anyone if they would help me find Iz. I really can't be disappointed in people for not doing what I would do, if I can't even point out what needs doing.
Leelo had a crappy day overall until the after-dinner magic time described above. If I had been home alone with him and the girls all day, I would have sunk very low indeed, and might not have been able to appreciate the wonder of Leelo's imaginative and clever verbal play. But thankfully Seymour sent me out for a few hours so I could work plus discuss things CISWY with the gracious yet also overwhelmed Jennyalice. I got a break. And because of that break -- only because of that break -- I was able to return home and resume the real work it takes to co-parent my three kids.
This time, I'll let you decide. Am I lucky?
Technorati Tags: autism, autism blog, autism siblings
Hitzuen. It just is.ReplyDelete
It was a stressful day that got worse then better, then even better.
Fox does the same thing with inserting new words into phrases and songs, and it's delightful, even when it's gross.
"Skittles, taste the rainbow?"
"Skittles, taste the butt."
You're dealing with what hurts and remembering to enjoy was delights. Remember to feel the first fully and savor the second endlessly.
I so has teh words.
I guess we all have days like this, huh? You're braver than I am, I've given up even trying to follow a religion, because Jaymes cannot handle places like churches... I'm just too afraid to try it. sounds like Leelo did pretty well though, even with the bad moments.ReplyDelete
Oh, please don't think twice about showing up again? Things go wrong, sometimes, for all of us. But, honestly, most people have their own worries, and don't remember much about what's going on with others, even when you think there's a goodyear blimp and neon signs over your head.ReplyDelete
I don't know it you're lucky or not, but you sure are DAMN AMAZING. I would have been have a meltdown along with Leelo within the first 10 minutes.ReplyDelete
Yes you are lucky. You got a break. We stopped taking Little Man to church over a year ago. It breaks my heart. You have my sympathy, and not in a pity vampire sort of way, but in a been there and done that, fellow parent in the trenches sort of way.ReplyDelete
@Jo, I am so very sorry. I am amazed that you have empathy to spare, and hope that perhaps your church members have extended some of their own empathy towards you. Readers, I encourage you to visit Jo's site so you can see what I mean.ReplyDelete
My church, overall, has been very supportive, has many times offered to provide support for Leelo with advance notice -- but I can no longer leave him under the care of someone who doesn't have serious behavioral skillz, no matter how kind and insightful they may be, and am not able to take advantage of this generous offer. It's frustrating; people really do want to help, they just don't always recognize when they can.
I shouldn't have brought Leelo there in the first place. But he has been doing so so so well in public lately. It might happen in the future. See? Optimistic again.
Can't believe no one left the service to offer you a hand with 2 cranky kids. GRRRRRR.ReplyDelete
On the other hand, you are right that there is no telepathy.
I run into some issues asking for help or expecting it at times, as you know... I'm learning to recognize that if I come into a situation that is likely to be too much for me to handle, I grab a specific person at random, and ask them to back me up. As an editor, you might put out that general call, and everyone is very positive in response, but they don't realize it is the time for them to step up, unless you address them directly and personally in the moment. What I mean is, you could likely go back to our local friendly Everythingtarians with all the kids, and tag one person likely to be helpful and say, Can you help me by doing X (in this case likely hovering a bit to monitor Iz and Mali.) Or, man, it's your *church*, ask for a backup person to help during that first 10 min and during the end/pickup time, and to do it every time. Delegating is hard, but you are good at recognizing who can be trusted to follow through...
Yeah I'm a fixer with the advice.
You're lucky but you've got some struggles, I'm glad you can acknowledge all of that.
Also, it can be confusing that watcing Leelo is too big of a job to delegate, but helping get Mali to and from class and making sure of Iz at pickup time is too small of a task and it seems you *should* be able to do it all. Or maybe even *could* 90% of the time. the "too small" doesn't matter.ReplyDelete
I *can* put my own wheelchair together and break it down again and carry my own backpack. If there's someone in the car with me, I am learning I might as well ask them to do it. That's an extra 5 minutes of oomph and cheer I'll have at my disposal later in the day.
This is sometimes hard to convey and you might need to explain the background about Leelo really, really, really not liking crowded noisy conditions such as hallways after church lets out.
I thought it was great day. ok, you lost Iz, BUT you then found her (hopefully some helpful lesson of not leaving the church without checking in with mom, can be drawn for the future), and Leelo, wow, Leelo truly did great. He didn't loose it, didn't hit, didn't poop or pee in his pants in sign of protest. In my opinion, I think that your perseverance of taking him out and about, and taking him to church, is -slowly; paying off.ReplyDelete
It took about 6 months for Little Bro to stop laying across the main entrance of the public library (blocking it) while waiting for me to check out the books. And that was already a step up from just bulking and leaving the building.
We too, go to the library every week. And I figured that, if *they* (as the staff and the public at large) had not already figured us out, my scuffle with the intollerant old volunteer lady, must have done it.
After all, *quirky is a lifestyle*, you better believe it.
The "lucky" question is somewhat perverse. Because I know that for some readers, a day like this would be horrifying and they're glad they only have to read about it. Others wish their days were so straightforward, that they actually got breaks, that their kids could walk around the block, that they only had one kid with moderate to severe special needs.ReplyDelete
I have a lot of context. I can't reiterate that frequently enough. And there is nothing about Leelo being Leelo that makes me sad anymore, not really. He's a great kid. It is his unpredictable violence and the resulting need for unrelenting vigilance that wears me down.
Thanks yet again, everyone.
Gosh, what a day for you mama.ReplyDelete
There are so many things I could say, having been in the same situation myself. Especially having one leave me in stores, etc.
What we do Squid is incredibly hard and difficult. A full time
nanny would halp greatly but who can afford it?
I love my 2 sons regardless of their autism. but it makes life SO
hard and disturbing at the same time. Mine cannot do the churches anymore, which makes me feel I am failing them as their mother.
I give you credit for trying.
It is almost like you have to choose you battles wih your child.
I understand your frustration, pain and helplessness. You are doing more than most parents can do.
I wish I could give you a big hug.
May peace and calm find you today.
You are such a lady after my own heart. I love your unending optimism, your faith in yourself and your son. Your hope, the sun will always come out again. I love it, because you help me continue to hope to. Just because today it didn't work, doesn't mean a tomorrow won't come that it will work. Keep hoping.ReplyDelete