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Confronting the Challenges of Parenting a Child with Special Needs
Lately, I’ve found myself telling my 10-year-old son that while it’s completely okay not to enjoy certain tasks—like homework or tidying his room—he still has to tackle them. Ironically, I need to take my own advice because I’m now on my third reminder from my daughter’s special education teacher about completing the (oh-so-dreaded) Parent Intake Form. And it’s only been a week!
It’s that time of year again when I’m faced with questions like, “Do you believe your child will be able to be their own legal guardian?” (No) and “What are your hopes and dreams for your child’s future?” (Honestly, I’m not sure, and I don’t want to think about it right now). This September, my daughter, Mia, transitioned into a junior and senior high school designed for teenagers and young adults with special needs. My tendency to procrastinate on filling out this form isn’t going to cut it this time.
I’ve never been good at masking how much I dislike these forms. It frustrates me to answer questions for which I feel I don’t have the answers. Or perhaps the truth is that I do know the answers, but I’m just reluctant to confront them.
If I’m being honest, I’ve always strived to be perceived as the “model special needs mom”—the parent who doesn’t create waves and is seen as agreeable. I want to be the one who submits every form and check on time, someone who understands her child’s situation and genuinely values the dedication of the professionals looking after her. I like that teachers feel comfortable confiding in me, and I’ve appreciated building those relationships. I don’t want to be labeled the “difficult” parent.
But every year, when this form arrives, I feel a surge of anger that I must document what we all know: Mia faces significant challenges. It’s likely that she will need the kind of care that can only be provided by her father and me, either at home or in a specialized facility. While she might hold a job one day, it would require constant supervision. As she approaches 17, we’ll need to start making plans to ensure we can be her legal guardians once she turns 18, because she won’t be able to live independently.
Her abilities seem to fluctuate. Some days, she can dress herself and whip up a snack, while other times, she expresses herself in a jumbled mix of words, and it’s only when you see her in those moments that you realize she’s desperately trying to communicate something like, “My teddy bear lost his coat,” while stuck in her shirt.
During these times, I struggle to empathize with parents whose children might have special needs but fall into the “quirky” category. These children may require school services but are likely to become independent adults. I don’t want to hear how they understand my struggles because, frankly, they don’t. Just like I can’t truly grasp the feelings of parents whose children may not face the same challenges as Mia.
This is why I dread these forms. Once a year, I’m compelled to confront the reality I’ve always known: as wonderful and unique as Mia is, she is profoundly disabled. I may put on a brave face, but deep down, I hope that one day she will accomplish things that I know her siblings, niece, and nephews will achieve without difficulty.
Each year, I face a part of myself I usually keep hidden—the self-pitying, angry mother of a child with special needs. I hope that one day this version of me will disappear for good. Until that day comes, I’ll reluctantly fill out the form, apologizing to the teacher for my tardiness and expressing my gratitude for her understanding. The only acknowledgment I’ll give to my alter ego will be at the last question, where I’ll once again write the same answer I’ve provided for three years running: “Mia would like to be a fairy godmother. We know there are limited positions available, but we believe if anyone can do it, she can.”
And once more, this will be the only answer I truly believe.
For more insights on parenting and navigating special needs, check out this article on intracervical insemination, and for those interested in the journey of motherhood, visit Make A Mom. You can also explore additional resources on pregnancy and home insemination at Kindbody.
Summary
This article reflects on the emotional challenges of filling out special education forms as a parent of a child with special needs. The author shares candid thoughts on the difficulties of confronting the reality of their child’s disabilities while expressing a desire to be seen as a supportive and proactive parent. Through personal anecdotes, the piece highlights the complexities of navigating the system while grappling with feelings of hope and acceptance.