I didn’t anticipate being a special needs parent. Yet here I am.
But what I also didn’t anticipate was the resistance I’d receive from another mom when it came to diagnosing my child.
Over the span of eight years, my husband and I have adopted four children. Two of them were later diagnosed with special needs. It was during the early months of one child’s hardest season, when a friend said something that stopped me dead in my tracks. I’d spent that morning calling, yet again, the local children’s developmental center, desperate to get off the nine-month-long wait list and in with a specialist.
My friend and I were discussing my child’s concerning behaviors and increasingly intense symptoms, some of which she’d seen in her child, too. I shared that we were going for a preschool evaluation soon, but I wasn’t sure how successful preschool would be unless my child had some accommodations in place.
She was silent for a long time, and then rendered her verdict. “You want exceptions. Kids need to be able to live in the real world, not get special treatment.”
I was equally offended and horrified.
But I was also sad for her child (and for her) too.
You see, her own child had similar issues as mine. But instead of making calls, researching, and networking with special needs moms for support, she had decided to put blinders on while simultaneously “advising” me on my child’s special needs. My forthcoming emotions and dedication to finding answers caused her to retreat to defensiveness and denial.
She continued by rattling off completely inaccurate, uneducated information about children with special needs. And I realized her response was based in fear and ignorance. She was both scared and prideful. She didn’t want something to be “wrong” with her child.
The problem with the refusal to seek an accurate diagnosis for a child with special needs, and then subsequently establish an effective plan, is that the child ultimately suffers.
The child suffers on the playground when the other kids run away, annoyed by the child’s repetitive noises. The child suffers when she falls more and more behind in the classroom, unable to write her name or count objects without scattering them. When he can’t go into any public space without having a sensory meltdown.
The child suffers when parents, teachers, and babysitters dole out punishments for behaviors and habits that cannot be controlled. The child suffers when appropriate help or encouragement is never offered. No therapies, no IEP, no sensory tools, no medication.
Perhaps you’re wondering if your child might have special needs but are scared to admit it too. Maybe your child has epic tantrums, rendering her inconsolable, long after toddlerhood. Maybe your son won’t eat anything but one particular brand and flavor of chips that must be served in the blue, plastic bowl. Maybe your daughter’s teacher has sent you countless notes about her hyperactivity, and you’ve stuffed these in a kitchen drawer.
I get it. The unknown is frightening. And perhaps you worry that your child’s special needs are a reflection of you. Your parenting style, your genetics, or what-have-you.
It’s easier to bury your head in the sand than face the struggle head-on. Even a glimpse of the future is terrifying.
But please don’t give up, and please don’t look away.
No matter the root cause of your child’s needs, which you may never know, your job is to love, support, and fight for your child for exactly who she or he is right now. Your denial doesn’t change the reality. But your lack of action can be detrimental to your child.
When you have the courage and conviction to take your observations and questions to your child’s pediatrician, you’re inching closer to a diagnosis.
A diagnosis is a beginning. It is a gift. It’s a starting point. Once you have it, it’s like a golden ticket, propelling you into a new world and reality.
Yes, there will be challenges and battles. Yes, being a parent of a child with special needs is frustrating, daunting, and confusing. Is parenting a child with special needs exhausting? Yes, of course. I need all of the coffee, all of the time.
But being my kids’ mom is such an honor. For me, there’s no plan B, fine print, or opting out. I walk into every school meeting and medical appointment armed with paperwork. The research I’ve done. The questions I want to ask. Past evaluations. I show up, determined, fierce, and certain of one thing: I’m going to push and push until my child is okay.
The sooner you step into the truth of your child’s needs, the better off they — and you — will be. You’ll become their champion and number one fan. You will not take shit from anyone who attempts to discredit or dismiss your child or your concerns.
You will rise to the occasion, because that’s what parents do. Because you can use your energy to sit in denial, fighting the plaguing observations you’ve made of your child, or you can use that energy to fight for what your child requires in order to succeed.
Step up to the proverbial plate. Step up even if you’re shaky. Even if your eyes are brimming with tears. Even if you’re scared and uncertain.
Be the parent your child needs you to be. And begin to appreciate the whole child you have the honor of calling yours.
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