It was time to deliver on a promise made. People I deeply trust, our prior daycare director and pediatrician, urged me to get help for Luke, “there’s something wrong” was all I could take away. The preschool experience for Luke was not fun, despite exceptionally trained staff. What appeared as a lack of participation in the sand pit and play equipment was something more. What appeared to be disinterest in crayons, Legos and paint was something more. I was that parent asked to leave quickly so my sobbing child could recover and adapt. I didn’t like conformity one bit.
The more time I had to reflect on what I knew and when, the clearer it becomes. The signs were always there.
Pediatric Therapy Network (PTN) was a nearby world-class facility, changing the trajectories of families with early intervention strategies. My first meeting with Zoe, Executive Director, and Gina, head of Physical Therapy, was exploratory. To my relief, we negotiated on price as we did not have insurance. At my request, Zoe performed Luke’s tests; herself an acclaimed author and internationally recognized.
I went home with three books, stunned by the first words read when opening a random page, “be careful what your child asks you to do for them”. It is indicative of what they already know about their limitations. I would add, “be careful what you do for your child that they could do for themselves. You’re robbing them of achievement and independence. Or you’re unconsciously in denial about something that’s too difficult to acknowledge. The latter explained me well. The more time I had to reflect on what I knew and when, the clearer it becomes. The signs were always there.
I recall the playdate Mom mocking Luke as he crawled with his leg tucked in, and not in use. I thought her rude but didn’t question the legitimacy of her response. Luke stood on one leg unusually early but not both – how did I not notice? Luke didn’t do the cross-over in his highchair, never reaching for food on the far side of the tray with the opposite hand. When bending near the screen door, Luke would inevitably hurt his head on the glass. As a toddler, my daughter knew to protect her head with her hand, knowing where her body begins and ends. I helped dress Luke every day; I wanted to parent fully. I could not have more children, they said. Luke’s birth was miraculous: a precious, perfect child, a gift from God. No one could say otherwise. It’s taken years to forgive myself for not acting sooner; I simply could not see.
When Zoe called with the results, I was unable to process her words. The test results were devastating. “Luke did poorly on the tests”. So, he did poorly. “No, Mrs. Y, Luke did very poorly”. She continued, “out of 17 tests, Luke scored below 1% on 14 of them – equivalent to scores we expect from a quadriplegic”. The dismissive tact I had taken quickly dissipated as my knees gave way. That was the beginning: Zoe became a vital partner and trusted friend in advocacy for years to come. I instinctively understood that there was a formula to unlock potential. Completely ignorant, I held onto hope.
I instinctively understood that there was a formula to unlock potential. Completely ignorant, I held onto hope.
I found a new preschool staffed by moms going back to work and college students. It was a bright space with hardtop and play areas and served its purpose until fall when Luke attends DK, Developmental Kindergarten, that magical extra year for readiness. The public school district evaluated Luke before entering “the system”. The summary by the school psychologist was surprisingly, not about Luke at all.
Enter an alternate universe, Anti-child services. One would come to understand that to some administrators, the bottom line serves the best interests of the district. I would learn firsthand a tactic to avoid acknowledgment and provision of services altogether – make the parent the problem. The report held to a specific format five pages long: “Mrs. Y says, Mrs. Y says, Mrs. Y says; Teacher A says differently”. The day before the larger conference, the psychologist phoned to get a sense of my position.
“I believe in playing fair, so here it is. I’m calling you out for the lack of professionalism in your report. The structure of the report is intended to discredit me over the opinions of untrained, uncredentialed, minimum-wage staff – who are well-intentioned but unqualified. I’ll have in attendance Zoe Mailloux, the world-class co-founder of PTN with extensive test results, and months of documentation for Luke’s physical and occupational therapy. You’ve been hyper-focused on me and that needs to change. If Luke’s name is not part of every other sentence, then we are failing Luke.” BAM! Mamma bear is in the house.
Above all, keep your child front and center in all discussions with administrators, teachers, and specialists. Parental reputations form quickly and are cemented early on. I prefer a healthy dose of fearful respect with administrators and deep collaboration with teachers and support specialists. Put your child’s well-being before your need to be right; it’s not about you. Invest in this trained network that can move mountains to help your child, if you’re a good partner and advocate – with a keen focus on outcomes.
Above all, keep your child front and center in all discussions with administrators, teachers, and specialists. If Luke’s name is not part of every other sentence, then we are failing Luke.
One tactic is to document what is working and what is not; cite specific examples used by your child in context, or challenges you observe. Specificity is key. Luke had complete ‘gaps’ in knowledge adjacent to age-appropriate categories. For example, in DK, when Luke looked at a four-piece puzzle of an elephant, with two pieces in place, he could not name the animal; nor could he distinguish between an elephant and a giraffe. He had virtually no short-term memory, couldn’t sing, climb the ladder to the slide, swing, step from side to side, or clap. I bought band-aids in bulk since he was constantly falling and getting hurt. He could only control his left foot on the tricycle if he looked at it, which meant steering was forfeited. “It doesn’t work,” Luke said. “What doesn’t work, the tricycle?” “No, my leg.”
Luke’s first DK report card arrived with all ‘S’s, “Satisfactory” indicative of meeting expectations. No ‘O’s for “Outstanding” were expected, but neither was this assessment. I met with Luke’s teachers who shared the role; the response was so swift that I had to presume this was a common annoyance. “No, we will not up his grades to Outstanding.” (Apparently, parents actually make that request in DK!) I emphasized that I was seeking the opposite. I wanted them to know my son – really know my son, so we can all best help Luke reach his potential. I shared my notes and concerns, but the edge was in the air. Carol responded that Luke passed the comprehension test with flying colors for Rosie’s Walk. I asked for a second test, and whether there’s an alternative explanation. “Consider for a moment that I am not some nutcase Mom and that you are correct, and that I am correct. What could make both true?
I wanted them to know my son – really know my son, so we can all best help Luke reach his potential.
To Carol’s credit, she called the district’s preschool teacher the next day to inquire. “The entire academic year is focused on Rosie’s Walk. The book, puppets, hard top games, class play, songs all have a singular focus”. Carol retested Luke using Are You My Mother, a sweet book about a farmyard chick looking for its mother among the animals. Luke could not distinguish the animals and why one would be, or not be, the mother. I kept the email that Carol sent. It’s a reminder for parents to step out on that limb of advocacy, even when it’s uncomfortable or seemingly against the grain.
Dear Laurie,
I just wanted to thank you for our meeting today. It was very helpful for me, and I feel like I am so much better equipped to help Luke reach his potential. I sat next to Allison (resource specialist–RSP) in a faculty meeting, and I shared my notes. She wants you to email her with your observations and questions. She is also available to meet. We are all on the same team and want so much to use this year to bridge the gaps for Luke.
On a personal note, I must say that your love and dedication for your child are inspiring. Very rarely do I see the passion, love, and persistence that you display. It is wonderful, and it encourages me as a teacher, mom, wife, and friend. I applaud you and encourage you in your efforts. Luke is a complete delight to have in class. I am honored to know you both.
Carol
Email, 2007 Jan 8. “Meeting Today”.
These teachers remain justifiably proud of their contributions to Luke’s success. I’m eternally grateful that they remained open-minded, and dedicated so that our beautiful, wonderful, amazing Luke could thrive.
Future Posts:
- Hearing the News
- Denial, Cultural Stigmas
- Being the Expert
- Empowerment
- Advocacy
- Assessments
- On Being Human
- Digging In
- Accessing the Curriculum
Resilient Moms - Making a Difference 