The Anxiety I Don't Talk About as a Special Needs Parent

As we begin the “eligibility” process to classify my son who will turn 3 in a few short months, I’ve never felt such feelings of sadness, fear, anxiety and a desire to fight.

My son was born at 35 weeks and has been fighting since day one. He is diagnosed with “failure to thrive,” low tone cerebral palsy, global developmental delay and possible seizures, and there’s a diagnosis yet to be determined. We go to countless hours of therapy, which he always takes like a champ, and every week he learns something new or perfects a skill. He’s constantly making progress and eager to be independent.

We have had multiple, what I call, “bang your head against a wall” conversations with our school district. I was informed my son “will be considered truant” if I pull him out to go his outpatient therapy. When talking to the social worker about alternative placement, she assured me their schools and staff are “trained to handle all kinds of children and disabilities, and they are not outsourced until they fail within their program.” And then the incident that began feeding my doubts — I observed other preschoolers yelling at my son to hurry up and get out of the way during an evaluation on the playground.

Based on these experiences, I believe this school district is not an appropriate place for my son to attend. Every time I step foot on the campus or see the phone number of the social worker come up on my phone, or anyone asks how the process is going, I start having a panic attack. A proper tour of the facility could probably ease some of this anxiety, but I’ve been denied this. I can pinpoint where my anxiety starts to come out and take over. And yet, I can’t stop it.

I’m defensive about what’s best for my son, whether I’m conversing with a friend, professional or most importantly, my husband. I want to apologize to the people who are willing to listen to me, and to my husband, who I feel like I’m alienating. But I don’t think it’s me. I think it’s my anxiety. The anxiety of being a special needs parent, and the fear of what the future could mean. I know most parents worry about their children, but I think there’s a special anxiety that comes along when you have a child with special needs. The fear that you don’t know where their life will lead. The fear that you can’t be in control constantly. The fear that no one can do it better than you. And ultimately, the fear that tomorrow is never promised.

I realize I probably sound neurotic to some people, but I pray someone else reads this and says, “No, I totally get it.” I go to therapy and I’m on medication, because Lord knows what I would be like if I didn’t get this out or have help to keep most of it at bay. But to anyone else feeling this, please know this: You aren’t alone. The anxiety doesn’t define us, and our kids are lucky we care so much we would move heaven and earth and fight to the death to get them everything they need and deserve.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? Check out our Share Your Story page for more about our submission guidelines.

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