Shoelaces

I'm getting tired.

This year has been draining, from an academic standpoint. As time goes on, I realize more quirky, beautiful, exceptional, lovely things about my Lilah Bird. The little girl who still struggles to write her name can tell you the meaning of the word "panoply". She has a beautiful bow hold when she practices violin. She can read faces better than anyone I know and is a compassionate friend. School is a struggle. Not because she isn't smart, but because she doesn't learn the way a lot of kids do. If you show her a picture to associate with a fact, she remembers it almost instantaneously. If you tell her the bare fact or fact + symbol, she has next to zero recall. She can count and has these crazy reasoning abilities when it comes to recognizing patterns and abstract mathematical concepts, but when I ask her to take 5 pennies, put two in one hand and three in the other, and ask her how many there are altogether, she still has to count each penny because "Now there might be 7." I try not to become frustrated. I tell myself in my head over and over that Einstein couldn't tie his shoelaces. I'm not saying Lilah Rose is an Einstein. But I have to keep perspective that people can struggle with the temporal things while contributing amazing things to humanity and living successful lives. She heard Daniel Radcliff has Developmental Coordination Disorder and likes to tell people that Harry Potter can't tie his shoes either.

In addition to fighting against my own impatience, I'm also fighting "the system".

The same system that I pay taxes to fund is sometimes actively or passively working against the kids it's supposed to be helping. I have had to stop and correct a special education administrator when he asked if such and such an intervention would "fix" Lilah.
"You don't 'fix' Lilah. Lilah is fine. You accommodate her learning style." Children are not toasters. Children do not need to be fixed. The same man told me that if he tested her as a blind student, she wouldn't qualify for services (trying to illustrate that her problems are merely physical and not academic, i.e. not his problem).
"Maybe so, but you couldn't give a blind child a traditional textbook and test them on it. You would still be required to give them braille." And I've heard that visual tracking problems are because of "kids and their video games these days", in reference to my daughter who can't voluntarily close her eyes to play hide and seek with the other kids.

So that's what I'm up against. Administrators who are hung up on the fact she can't write because she can't "prove her work", not because it hurts her that she has to wait for her (wonderful, patient, amazing) 1st grade teacher to come over to dictate her stories while the rest of the kids write their own. When she asked for a computer to type her stories herself, the administrative solution was taking months to ignore the problem, then handing her a label maker. It jammed, it was cumbersome, and she would hand it to me in frustration because she can't add punctuation or make capital letters without an adult switching modes. It took me having an absolute fit and involving every higher-up other than President Obama to get her a Chromebook.

I take it one issue at a time. We've been blessed with yet another teacher who not only works with and for Lilah, but who understands her. In this 24 year old, brand new teacher I was terrified to deal with after D'Anne's loving expertise, Lilah has found a friend and an advocate. Tori Jovanovski is always on her level, talking eye to eye, listening with her ears as well as her heart, and thinking outside the box. They chat about Miyazaki together, and she isn't afraid to call BS on Lilah or push her out of her comfort zone while supporting her every step of the way. Sue Adamson in the Resource Room is a pro at special learners and understands what right brained learners need to thrive and isn't afraid to ask for the tools Lilah needs to succeed. Lilah still loves school, loves her friends, loves Miss Marie and Miss Megan, her PT and OT who play with her, build her confidence, and help her gain skills. We have Mr. Jon, her incredibly kind and patient violin teacher who called her "his little guinea pig" and gets so excited when he finds another tactic to help a child with a motor processing disorder learn violin. Lilah can do things with a violin that she can't replicate anywhere else in her life, like crossing her midline with ease. For the child who can't write an "S" because it crosses her midline to be able to go from rest position to playing position from memory with no verbal cues or prompts, it's astonishing to me. We have this village of people surrounding us - moms and dads who take Lilah's quirks and idiosyncrasies as part of the package and kids who go absolutely crazy in protection of her if someone takes one of Lilah's "special tools" in the classroom or bother her about not being able to write. She has friends who mirror for her in gym and tell her "Make your body do what mine is doing" and who always cheer her on. She has "big kids" in marching band, color guard, and orchestra who are her idols. They are so kind to her and encourage her, hug her at concerts and performances, and she wants to be just like them when she's big. She has the orchestra director who takes her thousands of questions as a sign of interest and answers them enthusiastically. We have the district superintendent who has personally worked with me to help Lilah when he has so many other important things to do, because he has a college-age child who was a "Lilah" and he knows how much the little victories matter. We have a district where an underdog can thrive and where the quirky kid can be celebrated.

She's so lucky. But I'm so tired. It takes all of those wonderful things and sometimes more not to lose my shit when someone asks "What's wrong with her" or "Why can't she do ____?" And sometimes I do lose my shit. When she wants so much to see an exhibit at the DIA but the line is too long and her legs get so tired that I pick her up to give her muscles a rest. I know she's 6, Lady Who Is Glaring At Me And Shaking Her Head. I know she looks big enough to stand in line. But how many other 6 year olds do you know who would even want to wait in a 90 minute line to see a special art exhibit? She does, and I'm more than happy to hold her while she waits. Because someday I know she will be too big to hold. Someday I won't get that subtle "thumbs down" from across the room, where she's letting me know she's overwhelmed and needs me to step in. Someday I won't be able to scoop her up when her muscles give out and she slumps to the floor. But I'll never stop fighting for her, even when she weighs a hundred pounds and it isn't as simple as just picking her up. I'll always tell people that "Lilah is fine." And I will probably always lose my shit. But I'm thankful to live in a world where most people can tie shoelaces, but they still make velcro for little birds who can't, and to be raising her in a village that always echoes me. "Lilah is fine."