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Confronting the Truth About My Child with Special Needs
Recently, I’ve been reminding my 10-year-old son that while it’s totally okay not to enjoy certain tasks, like homework or tidying up, he still needs to get them done. Ironically, I find myself needing to heed my own advice because I’m now on my third reminder from my daughter’s special education teacher about completing the (ugh) Parent Intake Form. And it’s only been a week!
Yes, it’s that time of year again when I face questions like, “Do you think your child will be their own legal guardian?” (Definitely not) and “What are your hopes for your child’s future?” (Honestly, I’m not sure and I’d rather not think about it right now). This September, Mia transitioned to a junior and senior high school specifically for teens and young adults with special needs. Clearly, my tendency to procrastinate on this form is not going to be tolerated this time.
I’ve never been shy about expressing my disdain for these forms. I dread answering questions where I really don’t have clear answers. Or maybe the truth is that I do know the answers, and I just 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 stir the pot, who submits every form and payment on time, and who recognizes the reality of her child’s situation while valuing the expertise of the professionals involved. I appreciate that teachers have always felt comfortable confiding in me, and I cherish those relationships. I don’t want to be perceived as the “difficult” parent.
Yet each year when this form comes around, I’m filled with frustration at the necessity of articulating the reality that we all know: Mia’s challenges are significant. She will likely require care that only her dad and I can provide, whether at home or in a facility for adults with special needs. Sure, she might hold a job one day, but only under constant supervision. As she turns 17, we’ll need to begin looking into arrangements so that we can be her legal guardians when she turns 18—because there’s no way she can manage on her own.
Mia’s skills fluctuate; some days she can dress herself and make a snack, while other days, she might yell random phrases that only make sense to her, like when she’s stuck in her shirt and cries out, “My baby hippo lost his umbrella!”
During these moments, I struggle to empathize with parents of kids who may have special needs but still fall into the “quirky” category. Those kids who require school services yet will probably live independently one day. It’s hard to listen when they claim they understand my journey because they really don’t. Just as I can’t begin to grasp the emotions of parents whose children can accomplish what Mia does.
That’s the crux of my dislike for these forms. Once a year, I’m forced to document the truth I’ve always known: that while Mia is incredible and unique, she is also profoundly disabled.
I may seem upbeat about it, but deep down, I wish for her to one day achieve everything that her brothers, my niece, and nephews will likely accomplish. Each year, I confront the version of myself I try to hide away—the self-pitying, frustrated special needs mom. I genuinely hope she fades away one day. Until then, I’ll reluctantly fill out the form, apologizing to the teacher for my delay and expressing genuine thanks for her understanding. The only nod I’ll give to my alter ego comes at the last question, where I’ll answer as I have for the past three years:
“What careers or jobs has your child shown interest in?”
“Mia dreams of being a princess. We recognize that there are limited roles available in this field, but we truly believe that if anyone can make it happen, it’s her.”
And once again, that will be the only answer I wholeheartedly believe.
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In summary, facing the truth about my child’s special needs is an emotional experience that brings out feelings of frustration, vulnerability, and ultimately, hope.