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."
Tuesday, December 29, 2015
Sunday, October 4, 2015
Season of mists
This summer, this year. They flew by, and not pleasantly. I felt as if I was being whisked along from one thing to another, an ever-growing to-do list looming. The more items completed, the more items were added. 3am wakings with a gasp of things forgotten during daylight hours. Hot, sticky weeks of short tempers and long days. I longed for Autumn.
It came. With it, the Equinox's gentle, unspoken reminder that balance was coming. It was possible to bring my roiling emotions to harmony. I willingly gave up hours of sleep to seek out the women of my village who had helped me carve my identity out of the battered stone I'd been given. I laughed, cried, complained, gossiped, worked, and loved with them. Hours outside under the stars while children played, drinking wine and choosing bites food from platters passed person to person. Nights whiled away while weaving fiber into garments for our children, for our husbands, for ourselves, while sipping wine by candlelight. I struggled to work with and for my child to find the same balance the Equinox had promised me. Lilah Rose was struggling with her identity as well. How to come under the authority of others while ensuring they understood that she wasn't able to breeze along effortlessly like other children. She gravitated toward some adults, scorning others, and still others she regarded with cautious optimism while forging slow but steady bonds of trust.
I allowed myself to be consumed with the escape that came from books. Sinking into words from times I would never live in. I tried to let go of the anxiety of August and September and embrace October. From Equinox to Samhain, from waning light into gentle darkness. October never brought a darkness I was afraid of. It was a darkness that was deep, and velvety. It meant hearth fires and spicy scents coming from my kitchen. Weekend mornings spent wrapped in wool with hot things to eat and drink and music to play against the cold. Today was such a morning.
I was wrapped in a new, forest green wool wrap. It fell in gentle lines around me, draping with my movement and folding around me with my stillness. It was one of those garments that you feel was created for you, like an extension of yourself. There were bowls of steaming oatmeal, hot cups of coffee in stoneware mugs, music, and reading. Our peace was interrupted by Lilah screaming. Somehow the morning had gone from peace to chaos in moments. She had asked what to do with a few bites she had left of an apple she was munching on, and her dad had told her to throw it outside into the garden. She dissolved into hysterics. No warning and apparently no provocation. These outbursts had become more common since school started. It took 30 minutes of confused shouting from her parents to get anything even resembling order reinstated. Her dad went outside, slamming the door, and she fled sobbing into my arms. I was angry, annoyed, and still had no idea what had brought this on. She took the corners of my emerald wrap and tucked it around herself, rubbing her face against the wool to smear the tears away. I rocked her and asked, without much hope of a coherent answer, what on earth the matter was.
She choked out between sobs, "I wasted food. Mrs. McNeil will be so disappointed and it's all my fault," before breaking down again. Light of understanding dawned on my face. Her former teacher had been in charge of the "Green School" at JFK. She trained her kinders well in caring for the earth, reusing, recycling, composting, supporting endangered animal species, and protecting the environment. Lilah had struggled this school year with forming a relationship with a new teacher, wishing frequently to be under the charge of the teacher she had adored, the woman who knew her in some ways better than I did. She understood the nuances of Lilah's academic brain without effort, while it took all the patience I had to grasp her some days. Lilah brushed her tears away as more flooded from her eyes. I didn't appreciate her screaming at us, but I finally understood it. I wrapped her tightly in the folds of green wool and laid my cheek on her head, closing my eyes. I'm not sure if it was the feel of the fabric, the scent of the mulled wine bubbling in other room, the spiciness wafting from the bowls of oatmeal we had been eating, but when I closed my eyes, I didn't feel like a 28 year old in my living room anymore. It could have been 1000 years ago, or 1000 years from now. I allowed my logical brain the rueful admission that I was probably heavily influenced by the books I'd been reading, but there was something timeless about comforting my child against sadness, cold, illness with warmth, love, understanding. Her sobs grew less frequent. My anger ebbed like a tide. She calmed and explained everything to her dad. He explained that there were many ways to recycle food, and feeding some squirrels, the soil, or more probably, the dog when she went out, wasn't wasting food. The moment passed; peace was restored. I stood over the stove, gently stirring the mulled wine and adding more honey and cloves. I wondered how long I would be able to give my child comfort with just the warmth of my body. I doubted very much that I had many years left of being able to fit her in my arms. I would give her all I had for as long as she needed it, like thousands of mothers before my time, and thousands still to come.
It came. With it, the Equinox's gentle, unspoken reminder that balance was coming. It was possible to bring my roiling emotions to harmony. I willingly gave up hours of sleep to seek out the women of my village who had helped me carve my identity out of the battered stone I'd been given. I laughed, cried, complained, gossiped, worked, and loved with them. Hours outside under the stars while children played, drinking wine and choosing bites food from platters passed person to person. Nights whiled away while weaving fiber into garments for our children, for our husbands, for ourselves, while sipping wine by candlelight. I struggled to work with and for my child to find the same balance the Equinox had promised me. Lilah Rose was struggling with her identity as well. How to come under the authority of others while ensuring they understood that she wasn't able to breeze along effortlessly like other children. She gravitated toward some adults, scorning others, and still others she regarded with cautious optimism while forging slow but steady bonds of trust.
I allowed myself to be consumed with the escape that came from books. Sinking into words from times I would never live in. I tried to let go of the anxiety of August and September and embrace October. From Equinox to Samhain, from waning light into gentle darkness. October never brought a darkness I was afraid of. It was a darkness that was deep, and velvety. It meant hearth fires and spicy scents coming from my kitchen. Weekend mornings spent wrapped in wool with hot things to eat and drink and music to play against the cold. Today was such a morning.
I was wrapped in a new, forest green wool wrap. It fell in gentle lines around me, draping with my movement and folding around me with my stillness. It was one of those garments that you feel was created for you, like an extension of yourself. There were bowls of steaming oatmeal, hot cups of coffee in stoneware mugs, music, and reading. Our peace was interrupted by Lilah screaming. Somehow the morning had gone from peace to chaos in moments. She had asked what to do with a few bites she had left of an apple she was munching on, and her dad had told her to throw it outside into the garden. She dissolved into hysterics. No warning and apparently no provocation. These outbursts had become more common since school started. It took 30 minutes of confused shouting from her parents to get anything even resembling order reinstated. Her dad went outside, slamming the door, and she fled sobbing into my arms. I was angry, annoyed, and still had no idea what had brought this on. She took the corners of my emerald wrap and tucked it around herself, rubbing her face against the wool to smear the tears away. I rocked her and asked, without much hope of a coherent answer, what on earth the matter was.
She choked out between sobs, "I wasted food. Mrs. McNeil will be so disappointed and it's all my fault," before breaking down again. Light of understanding dawned on my face. Her former teacher had been in charge of the "Green School" at JFK. She trained her kinders well in caring for the earth, reusing, recycling, composting, supporting endangered animal species, and protecting the environment. Lilah had struggled this school year with forming a relationship with a new teacher, wishing frequently to be under the charge of the teacher she had adored, the woman who knew her in some ways better than I did. She understood the nuances of Lilah's academic brain without effort, while it took all the patience I had to grasp her some days. Lilah brushed her tears away as more flooded from her eyes. I didn't appreciate her screaming at us, but I finally understood it. I wrapped her tightly in the folds of green wool and laid my cheek on her head, closing my eyes. I'm not sure if it was the feel of the fabric, the scent of the mulled wine bubbling in other room, the spiciness wafting from the bowls of oatmeal we had been eating, but when I closed my eyes, I didn't feel like a 28 year old in my living room anymore. It could have been 1000 years ago, or 1000 years from now. I allowed my logical brain the rueful admission that I was probably heavily influenced by the books I'd been reading, but there was something timeless about comforting my child against sadness, cold, illness with warmth, love, understanding. Her sobs grew less frequent. My anger ebbed like a tide. She calmed and explained everything to her dad. He explained that there were many ways to recycle food, and feeding some squirrels, the soil, or more probably, the dog when she went out, wasn't wasting food. The moment passed; peace was restored. I stood over the stove, gently stirring the mulled wine and adding more honey and cloves. I wondered how long I would be able to give my child comfort with just the warmth of my body. I doubted very much that I had many years left of being able to fit her in my arms. I would give her all I had for as long as she needed it, like thousands of mothers before my time, and thousands still to come.
Thursday, July 2, 2015
IEP
I've basically just stopped weeping this week over Lilah's kindergarten graduation, so I'll start small with the updates and just cover her IEP.
I had the official meeting to discuss 1st grade with Lilah's IEP team. It included a speech/language pathologist, her school occupational therapist, her teacher, me, and her principal. I was nervous and didn't know what all to bring, so I brought my notebook filled with accommodations I thought she should have, and an educational journal article from Canada called "They're Bright But They Can't Write: Developmental Coordination Disorder in the School-Age Child". Alexis, the SLP, started things off by saying she was shocked things had been allowed to go so far without an IEP. I told her it hadn't been needed for Kindergarten, that D'Anne had a whole modified environment with special everything. They took all of that information down for her IEP - her "blue table" (a low to the ground, distraction-free workspace set apart from other students, where she is allowed to pick a friend a day for company), her computer and iPad programs that allow her to shift some of the burden of writing and motor planning to electronic devices, how she was getting OT off the books but had made great strides, how her testing is administered in the mornings before her fatigue sets in and when her memory is at its prime. Alexis scribbled everything down, crossing off and rewording in ways that sounded more official.
Derek, her principal, was called in because of one of my requests - alternative equipment for PE. "She comes home with slashes from jump ropes and bruises from kick balls because her brain can't send the message quickly enough to get her hands up to block them. She needs foam or beach balls to keep her safe." He agreed to it. They also agreed to purchase her some of the tech that she'd been working with at home - a color coded keyboard and light up mouse, apps for the iPad and computer to give her low-fatigue writing exercises, they gave her talk-to-text dictation software for assignments. One of the harder sells was D'Anne saying that Lilah needed aids for math. Manipulatives were easy to get, beads or bears or something tangible to count. The harder part was proving her work. Derek was concerned that a computer wouldn't help her there, because a calculator would give her the answers. D'Anne suggested number stamps, so she would still have to select the correct number, but wouldn't have the burden of writing it. He agreed.
I brought up that due to her poor motor planning skills, she should be allowed to go to her locker 5 minutes early upon arrival, getting ready for gym and recess, and dismissal to decrease her tardiness. They agreed to that too.
I listened as more and more ideas were piled onto this magic document. They made a copy of my article so no one would have to guess what the problem was. Of course, someday she would have to write. Someday these accommodations would all go away. But it isn't the teacher's job to show her how to gain a skill that should come naturally. It's now a task for her OTs. Her educational progress couldn't be allowed to suffer while Lilah exhausted herself over every task. Just sounding out and writing a simple word like CAT could take her a half hour and leave her shaky and in tears. But verbally if you ask her to do it, she fires it off in seconds. Ask her to type the word CAT and she regards her brightly colored Crayola keyboard thoughtfully and happily plunks away C-A-T. I watched her write a letter the other day on her keyboard. As she talked herself through the steps, I heard, "...I-N-G-period-spacebar-W with a crayon-h...", the crayon key being shift and her knowing already that she needed to capitalize. We have given up every single traditional teaching tool in my arsenal of homeschooling younger siblings and built everything custom from the ground up here at her Bird Nest. Her IEP team saw the difference in performance with what we were doing at home and what D'Anne had modified in the classroom, and purchased identical everything for first grade.
We gave up sight word flashcards and got her Snapcards. They're flashcards for right brained learners. They have the word encoded in a picture, and each card has a sentence and motion that goes with it. "Want" is a person reaching for sweets, and you hold out your hands and say, "I want some". On the backs of the cards is the word by itself. The instructions suggest letting the child discover the pictures themselves in whatever way they connect with, then choosing a motion either from the suggested one or on their own. Supposedly it not only helps right brained learners grasp the mystery that is high frequency words, but in the long run their comprehension is better because they learn the word and meaning simultaneously. Dubious, we went through all 56 together. Lilah was delighted with them, as she was with her Miyazaki flash cards. She's a sucker for a picture. Every day, she asked to do her Snapcards. After maybe 3 days, I decided to flip them over to the word-only side to see if any of this was actually sticking. She breezed through more than half of them without the picture cues, needing only the occasional hand motion or "What sound does it start with?". Total retention of something we spent the school year trying to teach her. Further confirmation that we needed to leave her the hell alone and follow HER cues with how she learned.
The only thing about the IEP I was truly nervous about was her placement for next year. One 1st grade teacher was not returning. One was a fantastic person and dynamic teacher but very structured in her classroom and a concern was raised that it would lead to frustration if Lilah wasn't able to keep up with the other students. The third teacher was unknown, as staffing was up in the air. D'Anne shared that the teacher I really liked but had concerns about (and truth be told, the one Lilah had announced she wanted and would get) had approached her and asked for Lilah. After discussing all the challenges that getting Lilah would entail, she still wanted her and had even thought up some pretty great ideas for her 1st grade success already. I felt a weight lift off my chest. No one would be saying, "Great, I get the kid that comes with an Apple Genius Bar's worth of equipment and an IEP that doesn't even let her play kick ball." She actually wanted her, wanted to see her succeed. She wasn't going from someone who loved her to someone who'd dread her. She'd go from one set of loving teacher arms to the next. These women amazed me in their strength, patience, and ingenuity. They had kids at home and households to run. But within the walls of JFK, my child was their child. She was their family. They gave her all they had and went home thinking of ideas on how to give more.
With a full heart, I reported back to Lilah. She asked about her teacher and I said it wasn't settled for sure until August, and I'd let her know (anything could happen and I didn't want to make a promise I couldn't keep). She said, "Well that's okay. I want Mrs. Cover. I know I'll get Mrs. Cover." I laughed and asked why she thought that. "Because Mama. I saw her classroom, and everything on the walls looks like what Mrs. McNeil has. She has the same words." Familiarity. "She always uses nice words with her students. She never yells at them." Kindness and patience. "And..." she got quiet and fidgety. "I think maybe, she would let me use things. Use my computer, and my keyboard." Acceptance. It tugged at my heart to see what simple, but immeasurably important traits my daughter wanted in her next teacher. I agreed with her that Mrs. Cover was certainly all of those things, and we'd see for sure in August. I was happy to tell her that 1st grade would come with her keyboard and mouse, her computer program, her little blue table, slantboard, all her familiar apps and manipulatives, and even some extra surprises like number stamps and new, gentler balls for PE. She jumped up and down all over the room and squealed. "I can't wait to be a 1st grader! I love being a Little Eagle!"
I had the official meeting to discuss 1st grade with Lilah's IEP team. It included a speech/language pathologist, her school occupational therapist, her teacher, me, and her principal. I was nervous and didn't know what all to bring, so I brought my notebook filled with accommodations I thought she should have, and an educational journal article from Canada called "They're Bright But They Can't Write: Developmental Coordination Disorder in the School-Age Child". Alexis, the SLP, started things off by saying she was shocked things had been allowed to go so far without an IEP. I told her it hadn't been needed for Kindergarten, that D'Anne had a whole modified environment with special everything. They took all of that information down for her IEP - her "blue table" (a low to the ground, distraction-free workspace set apart from other students, where she is allowed to pick a friend a day for company), her computer and iPad programs that allow her to shift some of the burden of writing and motor planning to electronic devices, how she was getting OT off the books but had made great strides, how her testing is administered in the mornings before her fatigue sets in and when her memory is at its prime. Alexis scribbled everything down, crossing off and rewording in ways that sounded more official.
Derek, her principal, was called in because of one of my requests - alternative equipment for PE. "She comes home with slashes from jump ropes and bruises from kick balls because her brain can't send the message quickly enough to get her hands up to block them. She needs foam or beach balls to keep her safe." He agreed to it. They also agreed to purchase her some of the tech that she'd been working with at home - a color coded keyboard and light up mouse, apps for the iPad and computer to give her low-fatigue writing exercises, they gave her talk-to-text dictation software for assignments. One of the harder sells was D'Anne saying that Lilah needed aids for math. Manipulatives were easy to get, beads or bears or something tangible to count. The harder part was proving her work. Derek was concerned that a computer wouldn't help her there, because a calculator would give her the answers. D'Anne suggested number stamps, so she would still have to select the correct number, but wouldn't have the burden of writing it. He agreed.
I brought up that due to her poor motor planning skills, she should be allowed to go to her locker 5 minutes early upon arrival, getting ready for gym and recess, and dismissal to decrease her tardiness. They agreed to that too.
I listened as more and more ideas were piled onto this magic document. They made a copy of my article so no one would have to guess what the problem was. Of course, someday she would have to write. Someday these accommodations would all go away. But it isn't the teacher's job to show her how to gain a skill that should come naturally. It's now a task for her OTs. Her educational progress couldn't be allowed to suffer while Lilah exhausted herself over every task. Just sounding out and writing a simple word like CAT could take her a half hour and leave her shaky and in tears. But verbally if you ask her to do it, she fires it off in seconds. Ask her to type the word CAT and she regards her brightly colored Crayola keyboard thoughtfully and happily plunks away C-A-T. I watched her write a letter the other day on her keyboard. As she talked herself through the steps, I heard, "...I-N-G-period-spacebar-W with a crayon-h...", the crayon key being shift and her knowing already that she needed to capitalize. We have given up every single traditional teaching tool in my arsenal of homeschooling younger siblings and built everything custom from the ground up here at her Bird Nest. Her IEP team saw the difference in performance with what we were doing at home and what D'Anne had modified in the classroom, and purchased identical everything for first grade.
We gave up sight word flashcards and got her Snapcards. They're flashcards for right brained learners. They have the word encoded in a picture, and each card has a sentence and motion that goes with it. "Want" is a person reaching for sweets, and you hold out your hands and say, "I want some". On the backs of the cards is the word by itself. The instructions suggest letting the child discover the pictures themselves in whatever way they connect with, then choosing a motion either from the suggested one or on their own. Supposedly it not only helps right brained learners grasp the mystery that is high frequency words, but in the long run their comprehension is better because they learn the word and meaning simultaneously. Dubious, we went through all 56 together. Lilah was delighted with them, as she was with her Miyazaki flash cards. She's a sucker for a picture. Every day, she asked to do her Snapcards. After maybe 3 days, I decided to flip them over to the word-only side to see if any of this was actually sticking. She breezed through more than half of them without the picture cues, needing only the occasional hand motion or "What sound does it start with?". Total retention of something we spent the school year trying to teach her. Further confirmation that we needed to leave her the hell alone and follow HER cues with how she learned.
The only thing about the IEP I was truly nervous about was her placement for next year. One 1st grade teacher was not returning. One was a fantastic person and dynamic teacher but very structured in her classroom and a concern was raised that it would lead to frustration if Lilah wasn't able to keep up with the other students. The third teacher was unknown, as staffing was up in the air. D'Anne shared that the teacher I really liked but had concerns about (and truth be told, the one Lilah had announced she wanted and would get) had approached her and asked for Lilah. After discussing all the challenges that getting Lilah would entail, she still wanted her and had even thought up some pretty great ideas for her 1st grade success already. I felt a weight lift off my chest. No one would be saying, "Great, I get the kid that comes with an Apple Genius Bar's worth of equipment and an IEP that doesn't even let her play kick ball." She actually wanted her, wanted to see her succeed. She wasn't going from someone who loved her to someone who'd dread her. She'd go from one set of loving teacher arms to the next. These women amazed me in their strength, patience, and ingenuity. They had kids at home and households to run. But within the walls of JFK, my child was their child. She was their family. They gave her all they had and went home thinking of ideas on how to give more.
With a full heart, I reported back to Lilah. She asked about her teacher and I said it wasn't settled for sure until August, and I'd let her know (anything could happen and I didn't want to make a promise I couldn't keep). She said, "Well that's okay. I want Mrs. Cover. I know I'll get Mrs. Cover." I laughed and asked why she thought that. "Because Mama. I saw her classroom, and everything on the walls looks like what Mrs. McNeil has. She has the same words." Familiarity. "She always uses nice words with her students. She never yells at them." Kindness and patience. "And..." she got quiet and fidgety. "I think maybe, she would let me use things. Use my computer, and my keyboard." Acceptance. It tugged at my heart to see what simple, but immeasurably important traits my daughter wanted in her next teacher. I agreed with her that Mrs. Cover was certainly all of those things, and we'd see for sure in August. I was happy to tell her that 1st grade would come with her keyboard and mouse, her computer program, her little blue table, slantboard, all her familiar apps and manipulatives, and even some extra surprises like number stamps and new, gentler balls for PE. She jumped up and down all over the room and squealed. "I can't wait to be a 1st grader! I love being a Little Eagle!"
Sunday, March 15, 2015
Working it out
A lot has happened since the last time I posted, and every time I thought, "Man, I need to stop and update all this as soon as ____ settles down," something equally tumultuous would happen to make me put it off. I committed to it today, though.
We had a pre-report card meeting with Mrs. McNeil. She didn't want us to be alarmed by some of the "below grade level" marks we were about to get in the mail. She said in a lot of ways, Lilah had made progress but the fine-motor component was still a big piece that was missing. She'd been looked at by OT, who agreed she needed therapy, and Speech, who said she absolutely did not. In the public school system, you have to have a qualifying diagnoses (Autism, dyslexia, etc) in order to receive OT, or have a problem that requires speech therapy. There is no such thing as standalone OT. We were told that some things just wouldn't connect properly until the fine motor component was there. Mrs. McNeil had even brought in a Lite Brite from her mom's basement and made paper letters for her to put pegs in to strengthen her hands. She wanted to keep an open dialogue about whether first grade was a good idea in May, or if it would just frustrate her and bury in her in work she wasn't ready to do yet. It was a very good, open, honest chat and I was (again) touched by the obvious amount of time and effort that was going into Lilah's day to day education. People whose faces I didn't know would send me messages or stop me in the hallways and tell me what a bright light Lilah was, how much they looked forward to seeing her face every day. For the first time, I felt like there was a dedicated team of individuals willing to do what it took to give her the best education she could get. I left the meeting with an idea.
The next day I called the Special Education Department to have a chat with the director. He reviewed the assessment she had done when she turned 5, and the recent notes on her progress. He recited the laws back to me, acknowledging their faults. I asked him what made more sense, in a district with a financial deficit - wasting another year of resources on a child who was emotionally and socially ready for 1st grade but needed help with her fine motor development, or giving her a few months of the therapy she needs and seeing if it helps.
"No, I get what you're saying, and I agree with you." I was rallying my next onslaught of arguments for when he started giving me the "that's the law" nonsense again. "So here's what I'm going to do. I want to give her OT off the books for the rest of the year." I re-played his words in my head, then covered my mouth because I'd started to cry. He said that he didn't want her to fall behind either, and in May he'd have the therapist write up a report. If they could show definite progress, it might help her get services into 1st grade. I thanked him profusely. He said he would get her started right away. I couldn't stop crying.
Lilah DID start OT, and did make progress. However, her therapist discovered a few things that were shared at Spring conferences. Dano and I had barely sat down in the tiny chairs with Mrs. McNeil when she asked, "Have we talked about the floating?" Apparently Lilah had mentioned (or they had somehow unearthed) that she always feels like she's floating. It was not uncommon for people with coordination and motor problems to feel off center and have a difficult time with grounding. Lilah had difficulty crossing her midline (this we knew), and had issues with executive function and motor planning. Mrs. McNeil brought out a typical Lilah worksheet, where she had difficulty cutting a straight line. Then she showed us one with her name written neatly, two hands traced, colored, and cut out. "When is this one from?!" I asked, hoping I wouldn't be told she'd hit up another child to do her printing and coloring (it's happened).
"The same day. We brought in phone books so her feet were flat and didn't dangle, and when she cuts, I have her stand now. This is what she did, on her own, with only verbal coaching." I couldn't stop staring at the little hands she'd cut out. On her own. Between the OT interventions, and her teacher asking us to send a copy of her Miyazaki flashcards into class, I was amazed at what had happened to Lilah in 2 months.
I talked to her pediatrician, who agreed with me to send Lilah to a neurologist for evaluation for something called Developmental Coordination Disorder. If we could show that she had a true coordination problem, she could get an IEP to guarantee her future services and accommodations in the district. I couldn't ask for a better experience from Kindergarten, but I couldn't just cross my fingers and hope that her 1st grade teacher would be as wonderful. If he/she wasn't, I needed accommodations in place that would allow her to rest frequently, stand if needed, not let her feet dangle, continue OT, and that was just in early elementary schools. DCD kids need help their whole lives. But it confirmed what we already knew. There was no cognitive problem, she wasn't lazy, defiant, or defective. Her learning style and coordination issues just needed creative workarounds.
Lilah asked to write her letters on her chalkboard this week, so I had her standing straight, resting her non-dominant hand against the chalkboard while she wrote, positioned in the proper way. The majority of letters looked like letters, but any that involved her crossing her midline like X or Z, she would look at the letter chart, look at the chalkboard, attempt, but nothing legible would happen. By the end of the alphabet, her arms and legs were shaking. It takes so much physical effort for her to do things that come effortlessly to some kids, but she keeps trying and getting better.
Lilah's enthusiasm for learning only continues to grow under D'Anne McNeil. I'm an advocate for my daughter, and in turn, Ferndale Schools for making sure she didn't fall through the cracks. I took giant platters of coffee cakes to the Special Ed department and the JFK staff lounge with thank you cards. I haven't felt this indebted to another woman since Leanne Hatfield, the woman who delivered Lilah into my arms. I look at this community of women who has formed this protective hedge around me since I became a mother - doctors, friends, family, teachers - and I am so grateful. To my mother-in-law for never criticizing me or my parenting, even though I'm sure there have been things she hasn't agreed with. To my sister-in-law for being an example of a loving, supportive mom who advocates for EACH of her boys as individual people, whether they have personalities like her or not. To the doctor who made me a mother, not just by giving me my baby girl but also by empowering me to firmly close the door on any past ghosts and not let them haunt my present. She treated ME, the whole person, not just my body. To the doctors I work for who pointed me in the right direction to get her the educational services she has benefited so much from, who taught me how to advocate for my child, who let me call them any time when she was sick, potty training, or just plain naughty and I didn't understand why. To the moms from my past who know the good, the bad, the ugly, and stand by in love and support. To the nurse I work for who mothers me when I need it but doesn't push me when I don't. To the tribe of women in my community who doesn't judge, who helps me with problems in the garden or problems with my knitting, who helps me survive the long winter. When the days come where I've overwhelmed by the guilt over my frustration with Lilah when she was smaller because I didn't understand a brain so different from mine, when the self-doubt and self-loathing creep up, this tribe stands with me so I don't fall, when I'm smart enough to let them. There was a quote on Twitter this week that I loved. "Family is an accident of DNA. If your family doesn't love or respect you, make a new family that does." While I was too either proud or ashamed (oh, what contradictory motives) to make a new family of my own, I am starting to see through my willfulness that I really do have an amazing one.
We had a pre-report card meeting with Mrs. McNeil. She didn't want us to be alarmed by some of the "below grade level" marks we were about to get in the mail. She said in a lot of ways, Lilah had made progress but the fine-motor component was still a big piece that was missing. She'd been looked at by OT, who agreed she needed therapy, and Speech, who said she absolutely did not. In the public school system, you have to have a qualifying diagnoses (Autism, dyslexia, etc) in order to receive OT, or have a problem that requires speech therapy. There is no such thing as standalone OT. We were told that some things just wouldn't connect properly until the fine motor component was there. Mrs. McNeil had even brought in a Lite Brite from her mom's basement and made paper letters for her to put pegs in to strengthen her hands. She wanted to keep an open dialogue about whether first grade was a good idea in May, or if it would just frustrate her and bury in her in work she wasn't ready to do yet. It was a very good, open, honest chat and I was (again) touched by the obvious amount of time and effort that was going into Lilah's day to day education. People whose faces I didn't know would send me messages or stop me in the hallways and tell me what a bright light Lilah was, how much they looked forward to seeing her face every day. For the first time, I felt like there was a dedicated team of individuals willing to do what it took to give her the best education she could get. I left the meeting with an idea.
The next day I called the Special Education Department to have a chat with the director. He reviewed the assessment she had done when she turned 5, and the recent notes on her progress. He recited the laws back to me, acknowledging their faults. I asked him what made more sense, in a district with a financial deficit - wasting another year of resources on a child who was emotionally and socially ready for 1st grade but needed help with her fine motor development, or giving her a few months of the therapy she needs and seeing if it helps.
"No, I get what you're saying, and I agree with you." I was rallying my next onslaught of arguments for when he started giving me the "that's the law" nonsense again. "So here's what I'm going to do. I want to give her OT off the books for the rest of the year." I re-played his words in my head, then covered my mouth because I'd started to cry. He said that he didn't want her to fall behind either, and in May he'd have the therapist write up a report. If they could show definite progress, it might help her get services into 1st grade. I thanked him profusely. He said he would get her started right away. I couldn't stop crying.
Lilah DID start OT, and did make progress. However, her therapist discovered a few things that were shared at Spring conferences. Dano and I had barely sat down in the tiny chairs with Mrs. McNeil when she asked, "Have we talked about the floating?" Apparently Lilah had mentioned (or they had somehow unearthed) that she always feels like she's floating. It was not uncommon for people with coordination and motor problems to feel off center and have a difficult time with grounding. Lilah had difficulty crossing her midline (this we knew), and had issues with executive function and motor planning. Mrs. McNeil brought out a typical Lilah worksheet, where she had difficulty cutting a straight line. Then she showed us one with her name written neatly, two hands traced, colored, and cut out. "When is this one from?!" I asked, hoping I wouldn't be told she'd hit up another child to do her printing and coloring (it's happened).
"The same day. We brought in phone books so her feet were flat and didn't dangle, and when she cuts, I have her stand now. This is what she did, on her own, with only verbal coaching." I couldn't stop staring at the little hands she'd cut out. On her own. Between the OT interventions, and her teacher asking us to send a copy of her Miyazaki flashcards into class, I was amazed at what had happened to Lilah in 2 months.
I talked to her pediatrician, who agreed with me to send Lilah to a neurologist for evaluation for something called Developmental Coordination Disorder. If we could show that she had a true coordination problem, she could get an IEP to guarantee her future services and accommodations in the district. I couldn't ask for a better experience from Kindergarten, but I couldn't just cross my fingers and hope that her 1st grade teacher would be as wonderful. If he/she wasn't, I needed accommodations in place that would allow her to rest frequently, stand if needed, not let her feet dangle, continue OT, and that was just in early elementary schools. DCD kids need help their whole lives. But it confirmed what we already knew. There was no cognitive problem, she wasn't lazy, defiant, or defective. Her learning style and coordination issues just needed creative workarounds.
Lilah asked to write her letters on her chalkboard this week, so I had her standing straight, resting her non-dominant hand against the chalkboard while she wrote, positioned in the proper way. The majority of letters looked like letters, but any that involved her crossing her midline like X or Z, she would look at the letter chart, look at the chalkboard, attempt, but nothing legible would happen. By the end of the alphabet, her arms and legs were shaking. It takes so much physical effort for her to do things that come effortlessly to some kids, but she keeps trying and getting better.
Lilah's enthusiasm for learning only continues to grow under D'Anne McNeil. I'm an advocate for my daughter, and in turn, Ferndale Schools for making sure she didn't fall through the cracks. I took giant platters of coffee cakes to the Special Ed department and the JFK staff lounge with thank you cards. I haven't felt this indebted to another woman since Leanne Hatfield, the woman who delivered Lilah into my arms. I look at this community of women who has formed this protective hedge around me since I became a mother - doctors, friends, family, teachers - and I am so grateful. To my mother-in-law for never criticizing me or my parenting, even though I'm sure there have been things she hasn't agreed with. To my sister-in-law for being an example of a loving, supportive mom who advocates for EACH of her boys as individual people, whether they have personalities like her or not. To the doctor who made me a mother, not just by giving me my baby girl but also by empowering me to firmly close the door on any past ghosts and not let them haunt my present. She treated ME, the whole person, not just my body. To the doctors I work for who pointed me in the right direction to get her the educational services she has benefited so much from, who taught me how to advocate for my child, who let me call them any time when she was sick, potty training, or just plain naughty and I didn't understand why. To the moms from my past who know the good, the bad, the ugly, and stand by in love and support. To the nurse I work for who mothers me when I need it but doesn't push me when I don't. To the tribe of women in my community who doesn't judge, who helps me with problems in the garden or problems with my knitting, who helps me survive the long winter. When the days come where I've overwhelmed by the guilt over my frustration with Lilah when she was smaller because I didn't understand a brain so different from mine, when the self-doubt and self-loathing creep up, this tribe stands with me so I don't fall, when I'm smart enough to let them. There was a quote on Twitter this week that I loved. "Family is an accident of DNA. If your family doesn't love or respect you, make a new family that does." While I was too either proud or ashamed (oh, what contradictory motives) to make a new family of my own, I am starting to see through my willfulness that I really do have an amazing one.
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