Recently, I’ve been reminding my 10-year-old son that it’s completely acceptable for him to dislike certain tasks—like homework or cleaning his room—but he still needs to complete them. Ironically, I find myself needing to heed my own advice, as I’ve now received three reminders from my daughter’s special education teacher regarding the completion of the ever-dreaded Parent Intake Form. And this is just the first week!
Yes, it’s that season again when I’m confronted with questions like, “Do you believe your child will be able to serve as her own legal guardian?” (No) and “What are your aspirations for your child’s future?” (Honestly, I don’t know, and I’d rather not think about it). This September, my daughter Sofia transitioned to a junior and senior high school designed for teenagers and young adults with special needs. Clearly, my tendency to procrastinate on this form is not going to be tolerated any longer.
I’ve never been shy about my disdain for these forms. I struggle to answer questions for which I feel I lack clear answers. Or perhaps the truth is that I do know the answers, but I simply don’t want to confront them.
Deep down, I’ve always wanted to be seen as the “ideal special needs mom”—the one who doesn’t rock the boat and is regarded as accommodating. The parent who submits every form and payment punctually, someone who comprehends the reality of her child’s situation and appreciates the expertise of the professionals responsible for her care. I’ve enjoyed the rapport I’ve built with the teachers and staff, and I dread being labeled as the “difficult” parent.
However, each year as this form arrives, I feel a wave of frustration knowing I must articulate what we all understand: Sofia’s challenges are significant. It’s highly likely that she will require care that can only be provided by her father and me, either at home or in a specialized facility for adults with special needs. While she might be able to hold a job, it will demand constant supervision. As she approaches 17, we will need to begin arrangements for her transition to adulthood, ensuring we can legally act as her guardians since she will never be capable of self-sufficiency.
Her capabilities have always fluctuated wildly. On some days, she can dress herself and prepare a snack, while on others, she may express herself in nonsensical phrases. In such moments, it’s only when you see her that you realize she is exclaiming, “My baby hippo lost his umbrella,” while struggling to free her head from her shirt.
During times like these, I find it hard to empathize with parents of children whose special needs are classified as “quirky.” These children may need services but are likely to achieve independence later on. I become frustrated when others claim to understand my experience because, in truth, they cannot. Just as I can’t fathom the emotions of parents whose children can’t do the things Sofia is capable of.
This is likely why I loathe these forms so intensely. Once a year, I am forced to confront the reality I’ve always known: as remarkable as Sofia is, she is profoundly disabled. While I may present a brave face, somewhere deep inside, I’m hoping she will one day accomplish all the things her brothers, my niece, and my nephews will achieve.
Once a year, I encounter a version of myself that I typically keep hidden—the self-pitying, frustrated special needs mom. I hope that one day she will fade away for good. Until then, I will reluctantly fill out the form and apologize to the teacher for my delays, expressing genuine gratitude for her understanding. The only concession I’ll make to my alter ego comes when I reach the final question, where I once again provide the same answer as the past three years:
“In which career(s) or specific job(s) has your child expressed interest?”
“Sofia aspires to be a princess. We acknowledge there are limited opportunities available, but we believe she has the potential to make it happen.”
And once again, it will be the only response I genuinely believe.
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Summary:
In this reflective piece, Emily discusses her struggles with the Parent Intake Form for her daughter Sofia, who has special needs. Each year, the form prompts painful realizations about Sofia’s severe disabilities and the reality of her future care needs. Emily grapples with her desire to be the “ideal special needs mom” while confronting the challenges and emotions associated with her daughter’s condition. Ultimately, she resolves to complete the form with honesty, showcasing her hope for Sofia’s future despite the overwhelming reality of her circumstances.