Four things my child with special needs has taught me

My daughter does a flip turn at the other end of the pool. Screaming erupts among teammates, competing teams, parents, and coaches as she and the swimmer next to her break the water’s surface in unison. My daughter rises higher, her arms out wide before whipping them forward to dive under the surface again.

I am hoarse from yelling. I can’t help myself. My girl, my child with special needs, has come so far and overcome so much. I am her biggest cheerleader.

Never did I imagine that I would have a child with special needs. I imagined a brood of “normal” kids. I ventured into parenting with prayers and dreams of perfection.

Please don’t judge me. I am being honest here. Special needs was a wild card, an unfamiliar and distressing spectrum of unknown territory. Special needs frightened me. Additionally, I was sure I did not have it in me to parent a child with special needs, granted I had no idea what it might take.

As it would happen, I would parent three with special needs. But this child — my third of four, our swimmer — would be the one to bring me to my knees, initially in abject fear and then in profound gratitude. My daughter would prove one of my greatest teachers, providing lessons I had to learn, even as I fought them. Here is some of what my precious girl taught me:

Meet me where I am

Adopted from China at the age of 12 months, she was truly sick and out of sync. Institutionalization just about broke her. Even though my daughter did not speak for close to three and a half years, she communicated what she needed. Along with signing, we had our own special language. I learned to listen with more than my ears and to be aware of more than the spoken word, discerning what her unique movements meant.

She showed me that her thumb was the best pacifier; naked was better than clothes; and that playing in the dirt and watching nature was fascinating. She was tender with ants, worms, and snakes. Curious and fearless, she held them without crushing their small bodies. When the time arrived to gently strip her pudgy hands of her “friends,” she erupted into keening. Although I took care to replace them with baby-safe insects, she was not fooled.

Listen to your gut and your heart, and hold me close

She quickly taught me that holding her skin-to-skin and heart-to-heart calmed her outbursts and de-stressed Mama. Indeed it was during these countless holding sessions that I absorbed the miracle of my daughter, memorized the millimeters of her porcelain skin and downy dark hair. I didn’t get much done those two and a half years, other than the basic care and parenting and general domestic duties and cooking. My daughter gave me many clues, but without a diagnosis, I was unable to meet all of her needs. I tried, oh how I tried.

Don’t give up, Mama

I had loved my daughter before I held her in my arms. I was determined to leave no stone unturned. Despite an initial screening and several follow-ups, specialists provided no diagnosis other than “significantly delayed.” They were divided on whether she would or could catch up.

I refused to believe them. My gut told me the specialists were missing something big — but of course, I had no idea what it was.

Always embrace hope, but prepare for the worst

I began to journal about my daughter’s behavior (unpredictable, no pattern), outbursts (constant), setbacks (many), likes and dislikes, movements (odd), and milestones (few). Close to being out of options, I scheduled another appointment and took my notes. Upon entering the therapy group’s office that day, hope pounded in my throat and prayers pooled in my eyes. I remember my daughter shifting in my arms so that she could look me in the eyes. Her sweet smile seemed to say, “We’ve got this.” She snuggled back into my chest, tucking her soft hand under my bra, resting over my heart, while we waited to begin.

The 30-minute appointment turned into several hours as other specialists screened my daughter. We waited patiently. Per usual, my diaper bag was bursting with snacks, milk, and toys. Fortunately, I had also packed her lovey, Snakey — a stuffed snake longer than her. My girl resorted to her sucking her thumb as time ticked by, next to the comfort of Snakey.

Excited voices grew louder in the room next to us. One therapist came to get us and took us into that room. The team gave us a diagnosis and outlined a plan for a battalion of therapies, which my girl began the following day. Therapy would not taper off for close to six years and would help my daughter and teach me more about supporting her as she became whole.

• • •

My daughter touches the wall first. No one screams louder than me. She turns and finds me in the bleachers. Pride and satisfaction light her smile. I smile back so hard my face hurts, and I raise two thumbs up. You got this, babe.

Judy M. Miller is a freelance writer living in the Midwest and a mom to four children. She is a Gottman educator.

Relevant Directory Listings

See More

Chelsea Piers Summer Sports Camp

<p><span style="caret-color: #222222; color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 12pt; background-color: #ffffff;">Chelsea Piers Summer Camp in Chelsea and NOW Brooklyn, offers both Preschool and Full-Day camps where children can learn, play and have fun. With flexible weekly enrollment, your child can join us for a week or all 11 weeks. Camp runs from June 19 to September 1. In Brooklyn, campers receive three swim periods per week with the option to add a 30-minute swim lesson to their camp day at an additional charge. </span></p> <p><span style="caret-color: #222222; color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 12pt; background-color: #ffffff;">Save 15% when you enroll by 2/28!</span></p> <p><span style="caret-color: #222222; color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 12pt; background-color: #ffffff;">NY: [email protected] <br />BK: [email protected]</span></p>

Buck's Rock Performing and Creative Arts Camp

<p>Buck’s Rock Camp is a freedom-of-choice creative and performing arts camp for teenagers ages 10 to 17. Every summer at Buck’s Rock is completely different. The campers who join us each year make the summer their own adventure, and the camp constantly evolves and changes to meet the needs of that year’s campers. So to answer the question “What is Buck’s Rock?” is simple: it is a safe space where young people can grow into whatever they want and need to be. </p> <p>The day at Buck’s Rock starts at 7:30am and ends at 10:15pm. What happens in between is as varied as our campers and as friendly as our beautiful campus. Every day at Buck’s Rock is different. What doesn’t change: our stunning pastoral setting, committed, professional counselors, and a camper-to-counselor ratio of 2:1.  </p> <p> </p> <p>Every day at Buck’s Rock is a new opportunity for self-discovery and creative expression. From the professionally-equipped studios and exciting performance spaces, to the state-of-the-art recording facilities and pool, campers are free to try anything and everything! Over 30 world-class programs await our artists every day, including everything from glassblowing to dance to painting to sketch comedy to radio to weaving to gardening and so much more!</p> <p> </p> <p>Many generations of Buck’s Rockers, including campers, their parents, and decades of dedicated staff make up our unique community. Just one summer at Buck’s Rock will make you a life-long member of our big, creative family. We can’t wait for you to join us!</p> <p> </p> <p>Tiered Tuition System based on gross annual income and household size; $0-$12,000</p> <p> </p> <p>Age: 10-17 years old</p> <p> </p> <p> </p>

Camp Lee Mar

<p><span style="font-size: 10pt; font-family: Arial;" data-sheets-value="{" data-sheets-userformat="{">A private 7 week residential summer program offering a unique curriculum incorporating a strong Academic and Speech program with traditional camp activities. Our campers flourish at Lee Mar due to the structured environment we provide which allows our campers to feel comfortable and secure. Careful study is made of parent input, school (IEPs), camper interview, etc., so that the interests and needs of each child can best be determined for suitable grouping prior to the camper arriving. At Lee Mar the children find comfort and friendship with children of similar age and functioning level. From this foundation we encourage our campers to embrace and learn new skills and have new experiences which they can build upon on their return home. We also focus on building friendships which last throughout the year, as well as learning how to cope with the dynamics of group situations. Development of the whole child is our goal. We work hard at improving the daily living, social, and life skills of our campers, while giving them the happiest summer of their lives!</span></p>