7 Lessons for Everyone from a Special Needs Mom

Most parents agree the birth of their first child shifted the tectonic plates of their lives as all attention and devotion turned to a squirming, squalling, demanding newborn. The Richter scale of parenting may record a moderate earthquake with a level of three or four. The dishes in the cupboards rattle a bit; maybe a vase tips off the table, but the house remains standing, albeit perhaps a bit askew.

When the newborn comes with a label of intellectual disability, the earth’s plates pitch and heave under the parents’ feet. Their entire world flips upside down as they grasp for the solid ground of understanding and acceptance. The Richter scale measures off the charts for this quake.

A Shocking Diagnosis

When the pediatrician told me Alyssa had Down Syndrome, my expectations, hopes, and dreams crumbled into rubble as my world shook. If you think this sounds painful, you would be correct.

But the earthquake of a disability diagnosis is not the end of the story when you’re walking through life with God. He never leaves us in despair. His higher purpose for disappointments will emerge.

To all who mourn in Israel, he will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair. (Isaiah 61:3 NLT)

Before long, God began a lifelong reconstruction process that revised my expectations, raised my hopes, and enhanced my dreams.

7 Lessons for Everyone From a Special Needs Mom

1. We all need God.

As a twenty-something young woman about to have a baby, I felt cautiously optimistic about my ability to raise a child. I had done my research and prepared. When I heard Down Syndrome, I immediately knew I was in over my head. I was completely ignorant. That floundering feeling inspired the title of my book, From Ignorance to Bliss: God’s Heart Revealed through Down Syndrome.

Who knows how long I might have gone through life believing I could survive without God? I needed to experience my utter inability to handle Down syndrome without His help. Doctors and other professionals could spout the facts. Information on the internet was somewhat helpful. My inexperienced friends couldn’t offer much. Parents of other children with Down syndrome gave sage advice, but they didn’t know my child.

I quickly learned my own ability was entirely insufficient. I turned to the One who designed Alyssa with the diagnosis of Down syndrome and set her into our family. In response, He expertly guided my parenting with wisdom born of perfect knowledge.

The Lord is close to all who call on him, yes, to all who call on him in truth. (Psalm 145:18 NLT)

None of us have the answers to the tough questions of this life. Our human wisdom always falls short in the end. Why not save yourself from needless suffering by calling on God? He never fails to respond to our pleas for help.

2. God’s priorities supersede our values.

In the earthquake of Alyssa’s diagnosis, my faulty beliefs about the value of life shattered. When faced with her physical limitations and intellectual disability, I suddenly realized how much worth I assigned to capability. After God bulldozed the pieces of my faulty worldview, He erected a new and improved structure of priorities and values. I worried about when Alyssa would walk, talk, and read. God showed me through His Word to focus on how she glorified Him.

I opened my spiritual eyes and saw Alyssa’s differences expanded and enhanced the beauty of my life. I learned from her unhindered response to God’s Spirit. I continue rearranging my priorities as He shows me His values through Alyssa.

Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need. (Matthew 6:33 NLT)

We often allow the world to dictate our priorities, and we wind up pursuing emptiness. When we put God’s priorities first, the lesser things of life fall into line.

3. God rewards perseverance.

Alyssa did not attain the skills most of us take for granted without a hard-fought battle. After three decades of mothering Alyssa, I am still astonished by her willingness to persist, even through frustration and tears. Tying her shoes took eight months of daily practice when she was in second grade. She copied letters and sentences for years before writing clicked. She will rehearse a dance routine umpteen times to get it just right.

Alyssa is my perseverance hero. I can only hope to apply the same stick-to-it attitude she demonstrates when I encounter challenges. Her example reminds me of an admonition from the writer of Hebrews to each of us.

And let us run with endurance the race God has set before us. (Hebrews 12:1b NLT)

In our spiritual marathon, the running lanes are littered with hurdles. Ours may vary, but we can encourage one another to persevere and cross the finish line with God.

4. Forgiveness prevents bitterness.

As the mom of a person with a highly visible disability, I have felt every long stare and rude comment. I have suffered from both subtle and outright rejection of my child. Unfortunately, Alyssa is not usually spared awareness and pain of these attitudes and actions—these offenses against her smash my heart into smithereens.

In today’s highly offendable culture, many flaunt offenses as fashion accessories. I admit I’ve been tempted to bind together the shards of my heart with bitterness. But a binding of bitterness will become shackles that strangle my heart, emotions, thinking, and actions.

God has shown me a better way.

Look after each other so that none of you fails to receive the grace of God. Watch out that no poisonous root of bitterness grows up to trouble you, corrupting many. (Hebrews 12:15 NLT)

As I offer forgiveness to those who offend, God rebuilds and transforms my brokenness into wholeness. He often goes even further. His grace breathes new life into dead relationships. I’ve seen Him open locked hearts and minds. He creates a detour that leads to a better opportunity.

5. Patience is possible.

When people admire my patience, I can’t help but chuckle and shake my head. They don’t realize, or maybe forget, the fast-paced, hate-to-wait, keep-it-moving kind of gal I was. I’m a quick thinker who makes snap decisions and jumps into action. Only God could transform my impatience into an ability to wait on others with grace. Quick confession—I still chomp at the bit on the inside. God is patient with me; His work is in process.

How did God accomplish this miracle in me? In the aftershocks from Alyssa’s birth, I couldn’t rush headlong to the next thing. The debris of uncertainty forced me to proceed more slowly.

In the early days with Alyssa, I felt like I lived in a time warp. As her stop-and-smell-the-roses personality emerged, our priorities often clashed until I began to appreciate her perspective. Her need for more time to process information stymied my ambition. Delayed acquisition of skills required me to delay my own agenda to help her. My life with Alyssa put me out of step with the norm but brought me into sync with God.

Be still in the presence of the Lord, and wait patiently for him to act. (Psalm 37:7 NLT)

We can be sure God will act within His perfect will and timing. If He delays, what we want is not best for us right now. If we’re frustrated when someone disappoints, we can trust God to fill the deficit in some other way. We wait and hope in the Lord rather than changed circumstances.

6. God grants peace in stressful circumstances.

The mountain of needs born into the world with Alyssa weighed heavily upon me. The sheer volume of my to-do list sent me into a panic. My heart pounded. Blood pressure soared. I leaped into action, determined to conquer every obstacle.

My action wasn’t wrong, but my attitude needed an adjustment. I relied on my own wisdom rather than on God’s. I bore the burdens in my strength instead of shifting the weight to Him—no wonder I felt frantic.

I had set myself up with an impossible task doomed for failure. I wasn’t created to figure it all out. I’ll never have the strength to carry my own burdens effectively. When my own controlling and manipulating finally brought me to the end of myself, I turned to God. Focus on His faithfulness calmed me from the inside out. Peace flowed through my veins to nourish every part of my being.

You will keep in perfect peace all who trust in you, all whose thoughts are fixed on you! (Isaiah 26:3 NLT)

We can fix our thoughts, our spiritual eyes, on the God who is willing and able to carry our burdens. He also bears the responsibility for the results. The more we perceive God’s character, the more we experience His peace.

7. We need the encouragement of fellowship.

As I grappled with the reality of raising a child with a disability, my preference for human interaction swung wildly from one extreme to another. On the one hand, I craved information from those who had been there, done that. I wanted to learn how to live out my new normal. I also longed for support, empathy, a listening ear, and an open heart. On the other hand, most people didn’t intuitively know how to offer what I needed. And some were not willing.

Some days I just wanted to withdraw from the instability of the outside world into a cozy cocoon of solitude with my family. But God did not create humans for solitude. He designed us for connections. I’m convinced He puts us in sloppy, up-and-down relationships to provide much-needed help while at the same time pointing out our desperate need for Him.

Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble. (Ecclesiastes 4:9-10 NLT)

We can and should seek relationships with others. God often uses people as His hands and feet to meet our needs. He also shaves away our self-centeredness as we interact with others. No human will perfectly support us, but we are blessed when we can help one another to bear up and succeed in times of trouble.

God’s Higher Ways

Because of the name of Alyssa’s diagnosis—Down syndrome, some folks make memes or t-shirts with cute slogans about the “upside” of Down. Indeed, when Alyssa entered my life, I felt like the earth had turned upside down. At some point in my topsy-turvy world, I realized my new view improved my understanding of God’s thoughts and ways.

“My thoughts are nothing like your thoughts,” says the Lord. “And my ways are far beyond anything you could imagine.” (Isaiah 55:8 NLT)

God’s ways are upside down and backward from our ways. He thinks and acts with complete knowledge of the past, present, and future. We can always trust Him more than our limited understanding.

If you happen to be a mom of a child with special needs, I invite you to focus on God’s higher ways every Monday at my podcast, Ordinary Moms of Extraordinary Kids. There you’ll find Bible encouragement to support you in your journey.

Are any foundations of your life shifting beneath your feet? Look for God to unearth new revelation of Himself from the wreckage of broken expectations and dreams. When He upends your life, you can be sure you’re about to see Him more clearly.

Related:

Annie Yorty writes and speaks to encourage others to perceive God’s person, presence, provision, and purpose in the unexpected twists and turns of life. Married to her high school sweetheart and living in Pennsylvania, she mothers a teen, two adult children (one with intellectual disabilities), and a furry beast labradoodle. She has written From Ignorance to Bliss: God’s Heart Revealed through Down Syndrome, and a devotional, 25 Symbols of Christmas: Finding Jesus. Please connect with her at AnnieYorty.com, Facebook, and Instagram.

Related Resource: Strengthening Your Marriage While Raising a Child with Disabilities

In this episode of Empowering Homeschool Conversations, your host Annie Yorty and her special guests dive into the unique challenges and beautiful complexities of maintaining a strong, loving partnership while navigating the demands of special needs parenting. Our expert guests bring a wealth of knowledge and personal experience to the table, offering invaluable insights and practical strategies for fostering resilience, connection, and joy in your marriage. Whether you're homeschooling parents seeking support, or simply looking for ways to strengthen your relationship amidst life's challenges, this conversation promises to provide the inspiration and tools you need to thrive together. Listen now!