5 Things My Special Needs Child Has Taught Me About Parenting
By Kara Stewart-Agostino
PHOTO © rawpixel/123RF
Feb 12, 2018
If babies came with an owner’s manual, you’d need the expanded version to prepare for a child with special needs. At eight weeks old, my daughter was diagnosed with moderately severe bilateral sensorineural hearing loss and received her first pair of hearing aids at four months old.
I could fill a book with the things I’ve learned about parenting over the past six years, but let’s start with five.
1. I’m Stronger And More Resilient Than I Knew
When we first received her diagnosis, I was filled with uncertainty, confusion and fear. I wanted to enjoy my newborn, concerned only with diaper changes, feeding schedules and sleep. I didn’t want to think about specialists appointments and meetings with social workers. Some days, I wish I could be like other parents who can send their child into school without wondering if someone will tease them about their hearing aids.
But the ever-changing hearing tests, advocating for services in the classroom and discussions with each new teacher — these are everyday realities and we can’t turn away from them. I need to be stronger than fear and more resilient than uncertainty.
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2. Focus On The Present (But Prepare For The Future)
Almost every hearing adult asks us the same question: will it ever get better? No. Her hearing will never improve and it may get worse. I don’t let myself dwell on unknown possibilities.
I focus on what I know to be certain. I know that she needs to see my face when I’m speaking to her and loud environments will be challenging. I know her teachers need to wear an FM system to support her integration in the classroom. Yet while I focus on what I know to be true today, I also prepare us for the future. We are learning ASL because although today she needs hearing aids, there is the possibility that one day the technology will not support her enough.
3. Be Prepared To Retell The Birth Story, Often
I have learned that every doctor, specialist and therapist will ask if we know why she has hearing loss. Was it a problem at birth? Maybe. Is there a genetic explanation? Maybe. One day, someone will explain the relevance of my daughter’s birth story to whether or not she will qualify for speech therapy. But as a parent, I am most effective when I focus on the present. I’ll leave the "why" questions for the doctors and specialists.
4. Expect To Learn About and Confront Your Fears
Before every hearing test, "what if" questions pop up in my mind. What if her hearing loss gets worse and she needs a cochlear implant? What if being in a mainstream classroom is no longer an option? What decision would the adult in her make?
These questions make my palms sweaty and my stomach turn, but I am forced to consider why they stir such feelings in me.
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5. Sometimes You Just Need to Cry Into A Pillow For Five Minutes
I am strong and resilient. I accept the present reality and make the most informed choices that I believe are best for my child and my family. I work hard to make sure she knows that she is loved exactly as she is — flawless. But sometimes it’s hard. The constant battle to make sure she has the right resources, the looks of pity and questions from strangers, reminding others (and myself) that she may not have heard the question that was asked three times.
The worry and the absolute love for this child who will one day have to navigate insensitive questions, advocate for her needs in classrooms, enter the dating world and find a job — sometimes the emotions feel overwhelming. But I don’t want her to see me cry, for fear that she will somehow think that she did something wrong. So I cry into a pillow. Then I wash my face and move forward.