Joy. Pride. Heart bursting with a new feeling…. hard to identify. I want to pick my daughter up and twirl her around! I feel like crying. Happy tears. I want to dance and sing over her! I feel closed doors flung open wide for her…. I know what this feeling is: it’s Hope.
I hadn’t realized that I was lacking it so much for her. I thought I had plenty of hope for her, but now in the moment of my extreme shift tonight, I am struck by how absent this feeling has been lately. I know, this isn’t making much sense yet, let me back up and explain a couple of things.
First of all, I have two beautiful daughters: before Eleanor there was Isabella, ‘Bella’ for short. The girls are just two years and six weeks apart (perfectly spaced, one thing that actually went as planned!) I haven’t written much about Bella here for a couple of reasons: first, she is alive and well, and second she has a lot of stuff in her way but I don’t want to do anything to disrespect her as an individual or make her feel embarrassed. Many of the challenges we face together are too private to share with the world at large, or even with friends and family. When I was a child, I remember being embarrassed anytime any attention was brought to me at all. If my parents had written that I had trouble with thumb sucking for instance, and posted that online, I probably would have keeled over right then and there from sheer mortification (I was ten when I finally quit). While I know that she is not me… and she may not feel the same as I do about lots of things, I still didn’t want to put her in a position where she would feel self conscious about these struggles. That isn’t to say that I haven’t wanted to write about her and our journey together… it’s just that I have had a lot of reservations when it comes to opening the window into her world. It’s the same protective Mama stance that kept me from writing about my girls or even allowing their pictures to be posted online until I lost Eleanor and I had to write to survive.
In a nutshell, Bella has several “things in her way” as I like to call them. In the harsh world we live in, they come with labels and diagnosis, they have codes assigned to them and those codes correlate to just what kinds of things I can get insurance to help with or government agencies to support her in. Among those labels and definitions are some pretty frightening words like: sensory processing, developmental delays, learning disabilities, borderline intellectual functioning, ADHD, genetic disorder, autism, vision problems and seizure disorder. I won’t go into most of those here in this post, because it is meant to be a joyful one: happy and hopeful and a celebration. You see, tonight I saw evidence of great hope for my child: She wrote a word without any assistance.
It was pineapple or ‘pinapl’. She had written it on her own, on a worksheet she’d completed for her vision therapy homework at her Dad’s this afternoon. This was a dot-to-dot of what you and I might call a pear, but she dubbed it a pineapple according to Dad. He stepped away from the table for a few minutes and when he returned, she’d written a word on the page: pineapple.
Now, I know that at eight and a half, most kids’ parents are not so overjoyed at one misspelled, messily written word scrawled across a piece of paper, with most but certainly not all the letters, in various sizes and orientations, but for me it was an amazing sight! A reason to celebrate. A milestone. A feat. And a sign of great overcoming in her future.
So, for those of you who don’t know us personally, or don’t know us well, let me explain that my child can’t yet read. She tries, but becomes extremely frustrated and overwhelmed with the tiniest attempts at reading and pre-reading skills. Honestly, I don’t really know why she can’t read yet, but I’m gathering clues and I guess we’re making progress. I have a degree in Early Childhood Education and used to teach preschool before I began working in mental health. I have more kid books, puzzles, games, toys and stuff than most parents do, and I had the majority of it before I had kids. I read to Bella every night. Last summer, I began reading ‘chapter books’ to her and she’s been hooked ever since. We just finished the “Little House” series by Laura Ingalls Wilder and she can tell you all about it… ask her. She has exceptional recall and an impressive vocabulary. Words, their meanings and concepts are definitely her forte, and she does a lot of oral processing (talking though her thoughts and feelings out loud). Gee…. wonder where she got that??? 😉 But, for reasons I can only guess at, she is struggling with reading. I generally don’t care. Well, that sounds harsh, I mean I am not worried about academics themselves, as long as she is progressing and learning, I know that the content of the academics will come when she’s got the groundwork laid. But I have to admit that this summer it has been bothering me that she is not yet able to read. My general belief is that her development is simply behind. It’s all there. Just slower in coming, slower in being perfected. In short, she needs extra practice for many of the skills most of us pick up on by just playing. For this reason, she sees multiple therapists to get those extra practice opportunities in, so that she can move on to the next step.
I’ve been taking her to vision therapy for close to a year now. It’s a type of therapy designed to help her train her eye muscles as well as to help her brain understand the visual input she sends it through her eyes. She has trouble looking at something and focusing on it for more than just a glance, her muscles won’t allow her to fix her gaze on a target. She struggles to follow where I’m pointing. To look at one object, she has to use an enormous amount of concentration (this is why she has a strained looking smile in many of the photos of her when I say, ‘look at the camera’). Asking her to look both ways before crossing the street produces a glance and her missing the object that could be moving (ie a car) because her head and eyes do not stop, so everything is moving. She can miss a moving vehicle in one look, but in the very next look see one that is parked nearby and become very afraid it’s going to hit her because she perceived it as moving. Her visual perception is ‘off’ in a downward angle by quite a bit. In other words, without her glasses on, everything looks significantly ‘lower’ than it really is. She has trouble with depth perception (this is a neurological training issue and she’s made great strides through therapy), and between these two abnormalities, the ‘picture’ of the world around her as it looks when it reaches her brain is quite different than if you or I were standing right next to her and seeing the same thing. The world looks very skewed to her. But she doesn’t realize this because this is all her brain has ever known. This affects her balance, her sense of space, her understanding of where she is in space, how close or far away an object is, and on and on. I doubt I understand even 5% of how this makes the world look to her, but I can tell you one thing for sure, it is one huge obstacle in her way.
We’ve been working on ‘sight words’ this summer. In very loose terms. Sight words as a concept was not around when I was in college (seems so very long ago, I’m old!) so I’m sure I have only a limited understanding of this approach now. But, it seems to be all the rage these days and it kind of makes sense that we learn some words that are super common just as quick little ‘accept it as a package deal’ type of thing as opposed to sounding them out. Anyway, one of her vision therapy exercises is to read the first letter of a line of print, then jump to the last letter of that line and read that one, then move to the next line down and so on. I still point where I want her to focus, but she is beginning to point for herself or do it without pointing. This is designed to help train her eye muscles (and her brain) to focus, to move left to right and to move down to the next line appropriately. Again, this is an example of how far things have to be broken down because so much stuff is in her way. So I use a kids’ story book and pick ones with very large print to help her succeed, and her job is to read the first and last letter of each line on a page and then I read the words to her, pointing to each one to reinforce the left to right movement. I started asking her to read the letters of one word here and there in the text ie. ‘d a d dad’. My hope was that with smaller words, she’d be able to focus on the letters and get used to just saying them, to get the concept of reading, and to simply ‘memorize’ the common ones which is I think what the sight word concept is all about. But after several sessions of this, it was clearly still too much for her. I even began to only have her do the same word throughout the text, ie ‘t h e the’ repeatedly every time it appeared. Another of her learning disabilities which I don’t understand well or have a name for is that she can’t take the information from a solution she has come up with and apply it to the next problem. So even though I kept it to the same word throughout the book, she couldn’t catch on that it was always, ‘t h e the’ the way we’d hope she would. One more layer. She was hugely frustrated and showing signs of melting down. She began to stim (short for stimulating -a misconception that stuck-) where a person with autism uses a movement or sound to try to help themselves calm down. She might flap her hands, shout, rock or any number of other things to help herself. It looks like a tantrum and that the person is overexciting themselves, but now we understand they are overexcited on the inside and these movements are helping them regain some sense of control. They are soothing to her. But they still mean she’s overwhelmed.
So, for Bella, trying to read is really pretty harsh. Not only do her eyes have trouble reading letters that are close together (it’s easier if there’s extra space between them: e x t r a s p a c e b e t w e e n so that her eyes can see each letter), but then there’s all the other issues she’s dealing with layered on top of that: Things like not being sure where she is in space, so she has to move or lean or push just to get extra ‘feeling’ so she can feel balanced and safe and not like she’s about to fall off the chair. Things like many of her senses being ‘louder’ than they are for most of us, ie the tag in her shirt is bugging her and it’s a HUGE feeling, not just something she can tune out, while at the same time she can hear something like the crickets outside at night and they won’t be quiet and a big part of her brain wants to chase that sound and pay attention to that instead of being available for reading. Her skin is constantly ‘itchy’ or ‘loud’ but these are just words I’ve given her to help her frame her experience for herself and others, her skin isn’t actually itching, it’s just feeling sensations ‘off the charts’ constantly. This is very distracting and makes it hard to do what I’m asking her.
I know there is more layered in there, but I’m not sure I understand all of it. I know she has trouble with ‘motor planning’ and ‘processing’, so for her to be told to touch her finger under each word or letter as she reads it, if she’s not shown (repeatedly), her brain has to take in the words I’m saying, “touch each letter”, decipher them, decide what that means, then organize her body parts (arm, hand, finger, eyes, focus) and coordinate their movements to work together, use large and fine motor (muscle control) at the same time (both of which her brain struggles with), and do what I’m asking her to do, while another part of her brain recalls what each letter is, coordinates that message and tells her to speak it out loud. And the dang crickets are still chirping!!
When I say Bella can’t read yet, it isn’t because she isn’t bright, or doesn’t try or doesn’t want to do what I ask of her. She wants to. Desperately. But I keep asking her to juggle these intensely complicated tasks with her already maxed out brain just trying to keep her skin from itching too loudly and the dang crickets are still chirping! Her brain is overloaded with what you and I would think of as a very simplified step. Our brains shut off the itchy tag sensation, tunes out the danged crickets and automatically shifts our foot or adds tiny bits of pressure throughout our body where it meets the chair, the floor, Mom’s arm etc. and just ‘knows’ where we are in space, mitigating the sensation that we’re about to fall. Your brain. My brain. But hers… has things in her way.
And there is more, I’m sure. More that I don’t understand about the things in her way. She doesn’t know what it’s like to have a brain that is clear and free of theses snares and can simply work fluidly, free to learn and explore and gather information and organize it. In some areas, her brain struggles with the most ‘simple’ things. I don’t know what other barriers are in her way when she tries to do what Mom tells her to do, to just read the letters. And I doubt that this long rambling awkward explanation of the tiny bits I do understand are even close to an accurate picture. But they are helping. They are what I do know so far. They are my peek into her world. They are why she can’t yet read.
But she can write!! She can sound out a three syllable word, organize her hand muscles and produce a recognizable legitimate rendition of that word translated into letters, write them out from left to right on paper with neurological and physical deficits that would humble any one of us, and communicate. Bella can’t ‘read’ yet. But she can write.
What a beautiful gift she gave me tonight. What a beautiful gift she gave to each of us!!