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.
