How I Found My Worth As A Mother In The Midst Of Raising A Child With Special Needs

How I Found My Worth As A Mother In The Midst Of Raising A Child With Special Needs

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AureliaAngelica / iStock

AureliaAngelica / iStock

As I prepared for my firstborn’s arrival, I had no doubt motherhood would suit me well. I had been taking care of babies since I was practically a baby myself and I adored kids. I’d easily managed the minor challenges I’d faced in my mostly charmed life. Hard work had always meant success, and I was sure parenthood would be no different.

It didn’t take long before I realized that was a fantasy. I had read all the parenting books and even taught parenting classes, but I was absolutely no match for my colicky infant. And I was even more out of my league as he grew into an incredibly spirited toddler.

I vividly recall meeting my psychologist friend for a playdate one winter day. For an hour, my son did nothing but attempt to smack her daughter. I was horribly embarrassed by his behavior. Finally, we concluded it must be nap time.

“Maybe he’s just frustrated he doesn’t have the language to say what he wants,” she hypothesized. And that was another thing. His development was stalling. He was falling behind in all areas despite our efforts.

“I always can tell which parents are reading to their kids,” his speech therapist chided. I bit my tongue to keep myself from telling her where she could stick her self-righteous attitude. I had read to him a solid hour every day, literally from birth.

At the same time, light started to bother his sensitive eyes and clothing tags started to irritate his skin. This agitation coupled with me denying him whatever he wanted often led to epic tantrums in grocery stores and coffee shops. More than once, it was implied that we needed to brush up on our discipline and parenting skills. Evidence that we were dedicated parents was definitely not demonstrated in our son’s behavior or his development.

Eventually, it became clear our son had autism in addition to many underlying medical issues. While his diagnosis changed everything in our little world, we received no free passes in the outside world, and it surely didn’t erase the pervasive feeling that we were failing across the board.

As we chewed up our savings to pay for therapy and medical care for our son, we were forced to borrow money from my parents. Proof that we were hard workers who budgeted carefully was not shown on our bank statements. We were decidedly not the picture of financial success or even stability.

As our married friends went on weekend getaways and Caribbean vacations sans kids to reconnect, we took shifts in my son’s bedroom so we could each get a little uninterrupted sleep. While our neighbors went on dinner dates, we headed to therapy to repair the fractures in our marriage that had resulted from sheer exhaustion and a never-ending workload. Confirmation that we were soulmates who loved each other deeply was certainly not apparent by our frequent bickering. We were not the picture of marital bliss either.

Before autism, we made it to every family event. We remembered every birthday. We were only a phone call away for whoever needed love or support. After autism, we missed weddings and even funerals. There was nobody who could care for our son, and the challenges of traveling with him and preparing allergy-safe meals on the road were more than we could take on in our sleep-deprived state. The fact that we care tremendously about our siblings, parents, and grandparents was not exhibited by our attendance at events that were important to them. The strength of our extended family relationships was nothing to celebrate anymore either.

As our neighbors carefully groomed their lawns and tended their flower beds, we set a goal of mowing the grass before it hit the 8-inch mark. Our pride in home ownership was clearly not on display when we received a letter from the homeowners’ association that our landscaping wasn’t acceptable. In yet another area of our life, we weren’t meeting expectations.

As my friends faithfully trained for half marathons and stuck to vegan diets, I hid in the pantry gobbling down graham crackers, too tired to make myself a proper meal after toting my kids to endless appointments and returning to cook all their meals from scratch. As my friends advanced in their careers, I threw in the towel. With an undiagnosed immunodeficiency disorder, my son was too sick far too often to be in childcare and his needs were too great to be properly met by anyone outside our home. In terms of self-care, I was failing too.

Most of the time, I felt like I was walking in quicksand. Every single day was so daunting, so unpredictable, so endless. “I have nothing to show for all my hard work, all my dedication, all my sleepless nights,” I sobbed to my dad one night in the Target parking lot.

In time, I realized my ideas of success and failure were all wrong. While I had always been the antithesis of the “tiger mom,” I was judging myself as a mother by how happy, healthy, developmentally on track, and well-behaved my kids were. I was judging myself as a woman by how often I made it to the gym and whether I’d remembered to put makeup on my tired eyes. As the mother of a child with special needs, the fact I read to my son nonstop wasn’t reflected in his speech and language. Our gentle and consistent discipline was not reflected in his behavior. Our hard work both inside and outside our home wasn’t reflected by our clearance rack Old Navy gear nor our messy house.

It was not humanly possible for me to raise a child with special needs while maintaining a Pinterest-worthy existence, so I had labeled myself a failure. Years passed before I recognized that as the parents of a child with special needs, our success cannot be measured by any outcome.

Our success is measured by the process. It’s measured by the depth of our love for our children. In our home, it is measured by the hundreds of times we’ve enthusiastically joined our son in yet another passionate conversation about heating vents. It is measured by the thousands of nights we bid farewell to some peace and quiet of our own and lay encouraging our son as he battled anxiety and insomnia. It is measured by our patience as he asks his millionth “why” question of the day. It is measured by the soft zipper-free clothes we carefully select to keep him comfortable.

It is measured by the meals painstakingly planned and prepared to give him optimal nutrition. It is measured by the money diverted from our retirement and into whatever intervention might make him a little more comfortable in his own skin. It is measured by the number of nights we’ve stayed up late with Dr. Google, sifting through research that might improve his quality of life. It is measured by the tears we’ve choked back as we’ve held his hand and encouraged bravery during yet another medically necessary procedure.

It is measured by the anger we’ve hidden and the composure we’ve kept as we’ve carefully and respectfully disagreed with the steady stream of arrogant doctors, teachers, and therapists who think they know our son better than we do.

It is measured by the number of desperate prayers asking God to please send our son just one friend. Just one. It is measured by all the times we’ve said “no” to other things so that we could say “yes” to him and “yes” to what really mattered.

As parents of children with special needs, the proof of our successful child-rearing will never be in the flashy, easily observable things. It might not be demonstrated by any special talent, or by musical or athletic ability. It might not be obvious on any report cards. Nobody will acknowledge it as we carry our screaming, flailing child out of a store.

We may feel we are failing as the preschool teacher calls to tell us we forgot to bring the snack, visitors arrive to find the kitchen in shambles, and our hair remains in a ponytail for months. But this is not the truth.

The proof of our success as parents lies not in these things, but in the depth of our love for our children and in the mundane ways we show it each day.

“Even after all this time, the sun never says to the earth, ‘You owe me.’ Look what happens with a love like that. It lights the whole sky,” wrote the poet Daniel Ladinsky.

Tired and weary warrior parents, you are not failing. The depth of your love will be shown yet again tomorrow morning as you roll your tired bodies out of bed and rise with the sun to light up your child’s world. The depth of your love will be shown as you complete all the tedious and thankless tasks required of you. Quietly and without fanfare, you’ll succeed once again in the most meaningful and noble of ways.

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