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How one mom found her way after her son’s special needs diagnosis

(Amy Aves Challenger)
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“Your child’s diagnosis is fairly straightforward,” said Dr. Gabby, our developmental pediatrician, as she handed me a one-page report. It was a chilly gray morning, not long after my first child’s third birthday. The thin paper I held could have been a white cape to wrap around my neck, with a label permanently attached: ADHD (observations of anxiety, sensory processing disorder, maybe PTSD, not yet able to diagnose at such a young age).

I was now officially branded as a special needs parent, ready to blast off into the complicated tornado of treatment plans. I was relieved to have a more clearly defined word to describe our preschooler’s struggle and some explanation for the ungodly stress I’d been experiencing.

I had known for a while that our son was different. He had open-heart surgery as an infant, and afterwards had developed a life threatening arrhythmia treated with toxic medications. We’d spent a lot of time in hospitals. But when he reached 12 months, his heart had healed, and the doctors said he was healthy. I was seven months pregnant with our second boy, and my husband and I were ready to start a “normal” family life.

At 13 months, our boy began walking, and over my pregnant belly, I witnessed an alarming transformation: he became defiant, hyperactive, and highly sensitive around sounds, transitions, and certain environments. Just as my second son arrived, the chaos really began.

I tried to describe (or maybe validate) my new anxious life to friends and relatives, he throws objects at my infant, destroys everything destroyable, clears every surface, tantrums throughout the day. He runs from everywhere, from everything! I wasn’t sleeping. The stress chewed at my gut, pumping my reflexes to jolt when he moved. My eyes darted like radar watching for the next disaster. “He’s just a boy… I’m sure you’ll get the hang of it,” people replied before disappearing. (I read this as, “You’re a wimp, I’m sure you’ll toughen up one day.”)

With an infant in my arms, I ran after my unregulated toddler through playgrounds, past chatting moms sipping lattes, and I felt ashamed. Why could I not do better— like them?

I had no choice but to learn how to survive parenting my special kid. And in a nutshell, here’s how I found my way:

I admitted my child was different, and I needed help. I got rid of my mommy pride and called a local parenting center, then Easter Seals, then an occupational therapist, a psychotherapist, and eventually a developmental pediatrician. I told them everything. I learned that my son wouldn’t qualify for public services because he had no remaining physical disabilities, but private therapy might help.

I hired a nanny with special needs experience to help daily. I interviewed preschools and found a structured, Montessori program where he could attend five days a week. They said they understood his challenges.

I tried to become patient. I mean really patient. A clock lived inside of my child’s head that often broke or exploded if required to conform to my plans. I had to recognize my new time teller, letting go of the goal to reach the grocery store, the park, or the friend’s house on time. I needed to slow down my speech, my movements, and inhale diaper-scented air when my plans were suffocating. I had to become content sitting in the dark brown hallway by the garage knowing we might never make it to the car. I had to accept arriving late, with a barefoot fist-flying boy who had thrown his shoes at me in the car. When I was patient, my boy felt a little calmer, and I could see more clearly through the mayhem.

I learned quickly that finding good dependable help for a challenging child also takes patience. The day after my third C-section, I took the call in my hospital bed from the new preschool with my third baby in my arms. “He can’t come back tomorrow, or ever. He just doesn’t fit here,” they said. Six weeks later, our new nanny quit. The one after that lasted a couple of months. I had to cry, breathe, cry, breathe, talk to the therapist, and breathe.

I educated myself. I read books and articles (a great use of breastfeeding time) about my boy’s diagnosis and his behavioral and treatment options. I visited and called all sorts of professionals and schools. I tried altering his diet and using various supplements. I learned that creating daily routine, structure, and using behavioral reinforcements were essential. I searched for other parents with similar children, but found few. Later I learned that many of them were hiding in their homes or therapy offices trying to cope, or living in complete denial. (The well-dressed, well-behaved children and moms I had seen at the parks, stores and music classes could not relate to my world. At all.)

I stayed connected to (and in love with) my husband. My husband Lynn was working a stressful, full-time job, and I was at home parenting and trying to remain sane full time, so communication was critical. It would have been easy for us to grow apart. But he valued every bit of information I found about helping our boy. He called me often, coming home early when possible, taking days off when I was shaking with exhaustion. Lynn became my arms, my legs, and the sturdy platform upon which I remained upright. He loved me through the confusion, the exhaustion, and the isolation. I learned that marriages can grow stronger through big challenges.

I didn’t hide. After experiencing countless embarrassing mommy moments with public tantrums, toddler aggression and more, I made a conscious decision to start wearing my new special needs parent cape proudly. I stopped expecting my son to fit in, and started educating others about his differences. If I hid, then my son would have to hide. If I hid, then I might miss all kinds of people and opportunities to help him. If I hid, I’d prevent educators and therapists from helping him effectively. If I hid, then I’d be demonstrating that special needs are shameful. So I started talking and writing about our struggles. And, lo and behold, other parents started talking too! I wasn’t so alone after all.

I recognized our limitations. When Type-A me stopped placing us in unrealistic (treacherous) situations, our lives got easier: I stopped visiting stores like Baby Gap where my shrieking, hyperactive boy grabbed hangers and threw merchandise; I started ordering clothes online. I stopped visiting crowded parks with unlatched gates where he would tantrum or run toward the busy parking lot; I went to quiet parks or stayed home. I stopped attending parties where he’d grab toys from confused toddlers before gobbling every sugar-filled item within reach; we met friends individually in quiet settings. Finally, we ended terrifying tantrums in planes and airports by ceasing most long distance travel. Friends and family members could travel to see us.

I captured snippits of time for me. I booked a sitter (or two) so Lynn and I could date weekly, and I occasionally escaped for a moms’ night out. I took my jogging shoes everywhere and found ways to run as often as possible, even if behind a double stroller with a crying child or two inside. I often joked that running was my anxiety medication. I escaped the house most every day, sometimes to acquire a latte or simply capture a nose full of fresh air. I’d try to be grateful for the peaceful moments— they were my treasures, no matter how tiny.

I admitted the journey will never end, and I embraced it. Moms have called me for advice just after receiving their child’s diagnosis with a disorder of some sort. And almost always they’ve asked in so many words if I could define exactly how long it takes for kids to be healed. I’ve explained that the challenges of a special needs child, as far as I can tell, do not end with any magical formula— not a medication, a therapist, a school, a church, or a cool device.

The peace has come when my eyes have simply looked into those of my boy’s, rather than squinting over him, trying to see the end to the journey. When I have pressed my feet firmly into the ground beside him, walking down with him into valleys, through deserts, and then upward, over smooth peaks— only then have I found healing.

My son is now 9, and tonight he had a tantrum after dinner. I still don’t have perfect answers for how to help him (and believe me, I want them). But as I write this, I’m certain that my struggles to parent him have transformed me into a kinder, less judgmental, more patient, and more forgiving human being. I’m eternally grateful for the peaks and valleys we have traveled together, and for the blessing of being his mother.

Amy Aves Challenger writes and paints from her home in Fairfield, Connecticut, and is currently working​ on her first novel about a special needs boy and his family’s struggles and triumphs. You can follow her on Twitter @amychallenger.

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