Recently, I’ve found myself telling my 10-year-old son that while it’s completely okay for him to dislike certain tasks, like homework or tidying his room, he still has to do them. Ironically, it seems I need to heed my own advice, as I’m now on my third reminder from my daughter’s special education teacher about completing the dreaded Parent Intake Form. And it’s only been a week!
It’s that time of year again when I’m asked questions such as, “Do you believe your child will be able to be their own legal guardian?” (No) and “What are your aspirations for your child’s future?” (I have no idea and honestly, I’d rather not think about it right now). This September, my daughter Emma transitioned to a junior and senior high school designed specifically for teenagers and young adults with special needs. Clearly, my tendency to procrastinate on these forms is not going to fly anymore.
I’ve never been very good at concealing my disdain for these forms. I dread having to respond to questions for which I don’t have satisfactory answers. Or maybe the truth is I do know the answers; I just don’t want to confront them.
Deep down, I’ve always wanted—no, needed—to be seen as the “ideal special needs mom.” The kind of parent who doesn’t rock the boat, who is viewed as approachable. The mom who submits every form and payment on time, someone who fully comprehends her child’s situation and appreciates the expertise of the professionals working with her. I’ve enjoyed the rapport I’ve built with teachers, and I don’t want to be labeled the “difficult” parent.
Yet, every year when this form arrives, I feel a wave of frustration wash over me. I’m compelled to document the harsh reality we all face: Emma has significant challenges. It’s likely she will need care that only her father and I can provide at home or in a specialized adult care facility. She might be able to hold down a job, but only with constant oversight. As she approaches 17, we will have to start exploring options and preparing to become her legal guardians when she turns 18 because there’s no chance she will ever manage on her own.
Emma’s abilities fluctuate wildly. Sometimes, she can dress herself and prepare a simple snack. Other times, she becomes overwhelmed and begins to scream nonsensical phrases. In those moments, it’s only when you see her that you realize she’s yelling, “My pet dinosaur lost its hat!” while her head is stuck in her shirt, desperately needing help.
During these times, I often find little sympathy for parents of kids who may have special needs but fall into the “quirky” category. They might receive services and eventually live independently, but their experiences are not mine. Just like I can’t fully grasp the struggles of parents whose children face challenges different from Emma’s.
Perhaps that’s why I loathe these forms so intensely. Once a year, I am forced to confront the truth I’ve always known: As wonderful and unique as Emma is, she is profoundly disabled. I may put on a brave front, but deep down, I hold on to a flicker of hope that she will one day accomplish everything her siblings and cousins will achieve.
Each year, I face a part of myself that I usually keep hidden—the self-pitying, bitter special needs mom. I hope that one day, she will fade away for good. Until that happens, I will reluctantly fill out the form, apologizing to the teacher for my procrastination and genuinely thanking her for her understanding. The only nod to my inner turmoil will occur when I reach the final question: “What career(s) or jobs has your child expressed interest in?”
“Emma would love to be a princess. We are aware that there are limited openings for that role, but we believe if anyone could make it happen, it’s her.” And once again, that will be the only answer I truly stand behind.
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In summary, facing the realities of parenting a child with special needs can be overwhelming. It involves confronting difficult truths while also holding onto hope for the future. As we navigate these challenges, it’s essential to find support and resources that can help us along the way.
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