As a doctor, I often find myself counseling parents about the challenges of raising children with special needs. Recently, I’ve taken to reminding my 10-year-old that it’s perfectly acceptable for him to dislike activities like homework or tidying up his room, but those tasks still need to be done. Ironically, I find myself needing to heed my own advice, particularly as I face yet another reminder from my colleague about completing the essential Parent Intake Form for my daughter’s special education needs. And it’s only been a week!
It’s that time of year again, when I’m prompted to confront questions like, “Do you believe your child will be capable of being their own legal guardian?” (No) and “What are your aspirations for your child’s future?” (I don’t know, and frankly, I’d rather not think about it right now). This September, my daughter, Mia, transitioned to a junior and senior high school tailored for teenagers and young adults with disabilities. Clearly, my tendency to delay filling out important forms is not something that will be tolerated in this new environment.
I have never been particularly adept at concealing my disdain for these forms. I struggle with questions for which I feel I lack answers. Or perhaps the deeper issue is that I do have the answers, and I’m just not ready to confront them. I’ve always wanted, and if I’m being honest, needed, to be recognized as the “ideal special needs mom” – the one who doesn’t stir the pot and is seen as agreeable. The mother who submits all necessary paperwork punctually and appreciates the expertise of the professionals involved in her child’s care. I cherish the rapport I’ve built with teachers and staff; I don’t want to be labeled the “difficult” parent.
Yet, each time this form arrives, I feel a surge of anger that I must articulate in writing what we already know: Mia’s challenges are significant. She will likely require care that only her father and I can provide, either at home or in a dedicated facility for adults with special needs. While she might be able to hold a job, it would necessitate constant supervision. As she approaches 17, we’ll need to start making plans and inquiries to secure our role as her legal guardians when she turns 18, as she will never be able to manage on her own.
Mia’s capabilities have always fluctuated. Some days she can dress herself and make a simple snack; other days, she may become overwhelmed and express herself in ways that defy understanding – like when she yells, “My baby elephant lost his hat,” while struggling to free her head from her shirt.
In moments like these, I find it hard to empathize with parents of children who may have special needs but fall into the “quirky” category. These children, while requiring support, are often on a trajectory toward independence. I don’t want to hear claims of understanding because they don’t share my reality, just as I can’t fully grasp what parents of children with different abilities experience.
This is why I despise these forms. Once a year, I am compelled to commit to paper the truth I’ve always known: as remarkable as Mia is, she is profoundly disabled. While I may speak confidently about her potential, deep down, I wish for her to achieve the same milestones as her siblings and cousins.
Every year, I am forced to confront a side of myself I usually keep hidden – the self-pitying, frustrated special needs mom. I hope that one day this part of me will vanish. Until then, I will reluctantly fill out the form, offering my apologies to the teacher for my tardiness and expressing my gratitude for her understanding. When I reach the final question, I’ll once again provide the answer I’ve given for three years: “What career interests does your child have?” “Mia dreams of being a princess. We recognize there are limited roles available, but we’re confident that if anyone can make it happen, it’s her.”
Ultimately, this response reflects my genuine belief.
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In summary, navigating the reality of raising a child with special needs can be challenging, requiring parents to confront uncomfortable truths about their children’s futures while maintaining a positive outlook.