I am Maisa’s mother
From the very beginning, I felt deeply attuned to my daughter. I asked questions, stayed engaged, and advocated for her at every stage of her life: from her earliest medical appointments throughout her school years.
As Maisa grew, it became clear that she experienced the world differently. She had remarkable strengths, but also sensory, emotional, and social needs that were not always fully recognized or understood.
In school, her brilliance and academic abilities were supported, while other parts of her experience were more often overlooked.
When Maisa began showing signs that looked like anxiety, we sought help. We reached out to professionals, shared what we were seeing, and followed the guidance we were given. We noticed every sign, and we were actively trying to intervene early and appropriately.
At the same time, there were moments when our concerns did not seem to fully land. What we were observing at home did not always align with how her needs were being interpreted or addressed. There were other times when our needs or concerns were flat out dismissed.
As things became more serious, systemic gaps became harder to navigate.
When she reached a crisis point, the support we needed was not available. In the aftermath, I was left not only with traumatic grief, but with numerous questions. Questions about how concerns are received, how decisions are made, how systems are reviewed, and how families are supported when they are actively asking for help.
After Maisa’s death, I also began listening more closely to other parents, and to other children. And I realized that what we experienced was not unique. There were clear patterns.
Parents noticing early differences. Families asking for help. Experiences of being misunderstood, dismissed, or redirected. And children whose needs, particularly neurodivergent needs, were not fully seen in time.
What I came to understand is that many systems are not yet equipped to consistently recognize or support neurodivergent children in all of their complexity, especially when their profiles do not fit expected patterns. And when met with lived experience or the opportunity to learn, many systems reject it.
SEEN was created in part from that realization.
To center lived experience. To look more closely at what is being missed, and then learn from it. To advocate for a world where neurodivergent children are truly seen, understood, and supported, before they reach a point of crisis.
I carry Maisa, and the truth of what we lived and continue to live with, into this work every day.