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Monday, July 9, 2012

Untangling the knot

When I was in second grade, my teacher read us a great book called Maniac Magee. (at least in my second grade mind it was a great book.) I haven't read it since then and I don't remember too many details but one thing I remember is that the main character is a homeless orphan who moves from place to place trying to find where he fits in. He's a mysterious boy who inadvertently keeps making enemies in his efforts to win acceptance. One of his biggest accomplishments in the story is untying the famous "Cobble's Knot" which is a big dirty ball of string that nobody has ever been able to untie. For his prize, he wins a year's supply of pizza which he happens to be allergic to.

We took the kids to the library this evening in what was probably a futile attempt to prevent our electric bill from skyrocketing in the 112 degree heat, and I came across Maniac Magee on the shelf. I don't know why, but the part about Maniac Magee untying the ball of string was really the only thing I remembered about the whole story. I picked up the book and flipped through it as I kept peeking around the end of the shelves to make sure that Raya was still at the table where I had left her with the other kids. She was in a foul mood this afternoon and evening as she has been quite often lately, and I really don't know why or what to do about it. As I remembered the account of the mysterious boy untangling the gnarled, tangled mess of string, I started to think about my little curly pigtailed girl who, at that moment, was rebelling against wearing her backpack and frowning at her brother & sisters as she repeatedly shouted, "Don't talk to me!" (in her mumbled way of saying it, and yes, she shouted in the library tonight. a lot.) and banging her stroller into the table over and over again.

My mind works in metaphors and they're usually pretty cheesy so this one is probably no exception, but I think my girl is a lot like that tangled ball of string (only she's not grimy like it said in the book. actually she probably is because it's super hot and she sweats non-stop and is on an anti-shower kick this week.) There are no real instructions in life for how to untangle a giant mess of string. Someone hands it to you and says, here, untangle this. You stare at it for a minute and then start picking at it trying to find a loose end. If you're lucky, people who have experience in untangling balls of string will come along every now and then to give you advice and show you what has worked on other balls of string to give you ideas of what might work on yours. Some days you pull on just the right loop of string and suddenly 3 feet of it unravel. You celebrate the progress and cross your fingers that it will continue.

Other days, every time you pull on the string, you only make the knots get tighter. Instead of seeing progress or even the potential for progress, all you see is a giant ball of tangled string that you may never see the whole of because you just can't imagine ever having the patience and strength to untangle the whole thing. Then there are the really low days when you wake up and find that someone has duct taped a pair of oven mitts to your hands and you just sit and stare at the ball of string (as it screams at its older siblings, throws its feeding pump backpack on the floor, and repeatedly bangs a stroller into the table at the library) and start counting down the minutes until bedtime and hope for a better and oven mitt-free day tomorrow. THEN there are the days when the knot doesn't want anybody to try and untangle it, it wants to untangle itself...
I don't think I need to elaborate on the parallels between untying a ball of tangled string and having a child with special needs of any kind. Cheesy as it may be, it's a relevant metaphor for any difficult situation in life. Every tangled ball of string is completely different than the next and even though there are similarities and some standard methods of dealing with the issues that arise in the process, and although there are theories, there is no way to predict the outcomes or how long it will take to reach them. Some days (or weeks) it's downright frustrating.

We've been doing a lot of redirecting lately. Or at least trying to recognize opportunities to redirect. Raya is still in a bit of a funk. 2 weeks of funk, to be exact. She's still not completely over the upper respiratory junk that she's had and I think the heat is getting to her. It's getting to all of us, which is not awesome since it's only the beginning of July and the heat is here to stay for at least 3 or 4 more months. Blech. I still wonder if she's got something else brewing in her belly or somewhere else in her body that I can't see but I've kind of given up on guessing things like that because I always end up working myself into an overly paranoid state and she always ends up just fine anyway.

Yesterday she was having yet another in a long string of clingy, whiny afternoons where all she does is hang on my leg and say "I want you!" over and over again even when I'm holding her. Yesterday, I was just about to start making cornbread to go with dinner when she started her routine. I said, "Raya, should Mommy make cornbread for dinner?" To which she replied, "No, don't WANT it!" So I said, "But everybody else might want some with dinner." To which she replied, "Don't WANT dinner!" So I said, "Raya, want to help me make cornbread?" And with a half smile, she said, "Yeah." and went to find something to drag over to the counter and stand on.

Patience with children in the kitchen is not my forte'. I have denied my poor kids many opportunities to help in the kitchen because I prefer to do things my way and keep it clean and sanitary in the process. It takes a lot of work for me to let go of perfectionism and let the kids help, much less Raya the two year old who can't see over the counter and lacks the motor skills to get things where they need to be. To make it short, every measuring cup and spoon of each ingredient ended up having its contents flung out of the bowl instead of into the bowl, which probably led to some foreign crumbs and such being included in the cornbread batter. (Note: don't panic if you've ever eaten dinner at our house or if I've ever brought you dinner, I don't let the kids help when we're cooking for other people.)

When everything was ready to mix, I brushed the rest of the cornmeal, salt, sugar, and flour off of the counter onto the floor, put Raya on the counter next to the mixer, and swept the floor because I couldn't stand how the cornmeal & sugar felt on my feet. (maybe I have sensory issues...) THEN we turned on the mixer so she could watch everything get mixed together.
While she watched the mixer, she said things like, "Don't like it. Don't wanna eat it. That yuck." and so on. Okay, I get it, you don't want to eat the cornbread. It made her content (happy isn't the right word) to "help" me make cornbread even if she didn't want any.

I had told her we were having beans for dinner and that made her happy. I asked her if she liked beans and she said yes. When dinner was ready, I put beans in her bowl like she asked. I smashed them up and put sour cream in them and cheese on top like she wanted. Then I put the bowl in front of her and she said she wanted sour cream. I gave her some and reminded her to eat her beans. She picked through the mashed beans to find lumps of unmixed sour cream and licked at them while leaving the beans untouched. It was frustrating.
I got her to kiss the spoon with beans on it but that's as far as it went. She barely even touched her sour cream. Tomorrow we have feeding therapy for the first time in almost a month. I'll sit across the table from her therapist and tell her that Raya was doing so well with tasting new things and taking small bites and swallowing in between bites. WAS being the operative word. Then I'll have to tell her that since Raya got sick, she hardly swallows anything and the only thing she ever wants to eat is ice cubes. Again. Just like all the other times she's gotten sick. Then her therapist will tell me to just keep trying, keep offering foods she likes and new foods, keep staying in control of Raya's eating experiences, and to hang in there. And I'll take a deep breath and we'll keep plugging away at it. And someday. SOMEDAY. We'll untangle this sweet little ball of string, one little bit at a time.

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