Tips for raising kids with disabilities and special needs can be learned in unexpected places and events. Heather Johnson, mom to three kids with special needs, discovered three tips when from she returned from a once in a lifetime trip with her husband and her elderly father just as the COVID pandemic began. In this post, she shares her final two tips. The first post in this series can be found here.

Tip 2: Know that your current chapter in life is not the end of your story.

We live in a world that’s rocked and rolled by the unexpected. As parents of three kids with disabilities who are now adults, we’re thankful for God’s grace giving us fuel to keep going, to keep hoping. This broken world with all of us broken people is not the end of the story. 

Our family has found strength for the long haul in knowing that God is working all things, even horribly hard things, together for good (Romans 8:28), in his perfect timing. Sometimes we get to see how God is working and other times we don’t. For us, we’ve come to terms with the not knowing and, actually, not knowing has made life more exciting because what we do know is explained in my final tip.

Tip 3: Trust God’s promises.

Our Tanzanian guide couldn’t promise we’d see the “big five” everyone hopes to see on the same safari—lion, leopard, elephant, cape buffalo, and rhinoceros. Turns out, we did see “the big five”. But God has given us more than five big promises that are certainties, not just possibilities.  

We’ve learned, as a family, that God doesn’t give us everything we want, but he promises to give us everything we need. Problem is, when we’re close-hearted and tight-fisted, there’s no ability to receive. Letting go and opening ourselves to things we’ve never thought about or hoped for is key to finding how good God is. 

God has changed our minds about what’s good—what’s worthy to want. And we’ve witnessed that every “no” answer to prayer paves the way to a “yes” answer that’s better. 

Letting go and trusting God isn’t always easy. In fact, it feels often like we’re dying. Because we are. We’re dying to a bit or ourselves that thinks we know best—our hopes, dreams, expectations—and letting God give us something better. 

For I know the plans I have for you, declares the LORD, plans to prosper you and not harm you, plans to give you hope and a future. Jeremiah 29:11

I gave all three of our kids this same “life verse” before we ever met them in that Russian orphanage. I had no idea the same verse would become mine to have and to hold until the end of time. 

You can hold the same promise for yourself. Read it. Memorize it. Write it on an index card and carry it with you like I do. Hold it more tightly than anything else in your life. Because it’s God’s promise that will never be broken. 

No matter where you are in your parenting journey right now, know this—you’re never alone. God knows you and loves you. God will help you through the thunder and crashing during your great migration through this life to a place of peace where you will look back and say you and your loved ones are blessed more than you could have ever imagined. This is a mystery worthy of all our heart, mind, soul, and strength. 

It’s a joy to journey with you!

Part 1 of Tips for Raising Kids with Disabilities and Special Needs

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Tips for raising kids with disabilities and special needs are usually the product of trial and error. But Heather Johnson, mom to three kids with special needs, discovered three tips when the COVID pandemic entered the scene on the heels of a once in a lifetime African safari. She shares one of the tips in the first post of this series and the other two in the second installment later this week.

One year ago my husband, my 87-year-old father, and I boarded a flight from Chicago for a two-week African safari in Tanzania. After a year of planning and anticipation, we were about to experience the most marvelous part of creation we had ever witnessed–except for having kids. 

We saw lions, leopards, cheetahs, elephants, cape buffalo, and hippopotamus so close to our vehicle that I didn’t need my Nikon zoom lens most of the time. My iPhone 8+ took stunning photos. 

On the Serengeti plain, zebras and wildebeests thundered around us on their annual migration north, braying and bellowing as they ran. Hyenas, meerkats, warthogs, and yellow-billed hornbills made The Lion King come to life.

This was bliss—as close to Eden as we could come. Far away from civilization in the African bush, we were unaware of what was thundering and spreading across the globe at a breath-taking pace, literally. 

Covid-19. 

We returned to a world changed suddenly and dramatically. Masks, social distancing, school and business closings, job losses, blaming, shaming, raw nerves flaring. 

From bliss to this? Shocking, to say the least. 

So what did an awe-inspiring African safari and a frightful Covid-19 pandemic teach parents like you and me about living with and raising kids with special needs? Here are 3 tips our family is still learning.

Tip 1: Hold hope tightly but hold expectations loosely.

As new parents, sometimes our sky-high hopes come crashing suddenly, thundering through our whole being. Such was the case when my husband and I learned, one-by-one, that all three of our kids we adopted from Russia had multiple, invisible disabilities stemming from fetal exposure to alcohol (FASD). We gave our kids every opportunity to develop. Still, the neuropsychologists weren’t quite right in their predictions. 

For our daughter, 29, independent living and driving will never happen. For our oldest son, 27, a weekly caregiver helping with meal preparations, cleaning, appointment setting, and money management will always happen. For our youngest son, 22, who knows? His attempt at tech school ended with words uttered to me through sobs near the end of his first quarter. “I tried as hard as I could, but I couldn’t do it.” Now he works in a factory and is happy as can be, as are we. There’s been grief and tears, for sure. Loss is hard. But grieving losses is good, even necessary, for moving on and opening our hearts again to new possibilities. 

We are happy all our kids are living lives that have caused us and others to realize an important truth—it’s not what we have or what we do that makes us happy. It’s accepting who we are and being loved no matter what that makes us happy. When we have love, we know the present is not the end.

That profound truth leads right into the second of my tips for raising kids with disabilities and special needs. I’ll share it in the second post in this short series which will become available on March 11, 2021.

Part 2 of Tips for Raising Kids with Disabilities and Special Needs

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