Learning despite delays

My daughter, Grace, came into the world as a micro preemie 11 years ago. 

Born at 24 weeks, weighing 1 pound, 6.2 ounces, Grace had a 66 to 80 percent chance of survival.

She faced many medical challenges (as many preemies do), and she had lot of catching up to do. 

Our family faced some tough times, to say the least. 

It was hard on all of us, including Grace’s two older sisters. Meanwhile, my husband faced the challenge of financially and emotionally supporting our family of five. 

We lived in and out of hospitals and clinics. 

Grace was put on one antibiotic after another and nebulizers were a part of her daily life. All told, she had seven surgeries to address her many health issues in those early years.

Beyond survival

As Grace grew older, she became physically healthier, but her development was delayed in many areas.

And so a new era of challenge began: She couldn’t control her impulses or concentrate on one task at a time. 

It was a stressful time for me. I would cry and pray a lot, for more time and patience. 

I told myself: “Accept the things you cannot change.” But in my heart, I wasn’t giving up on Grace. I knew she could learn. 

I reluctantly took the advice of my mom’s words, “Just give it more time.”

And there were glimmers of hope.

We could tell Grace was learning: If you showed her something, you could see that she understood.

Even though I wasn’t sure how much information her memory would store for the next time we introduced the same scenario, every little success spurred me onward.

Dare to believe

And I know now that following that hope was one of the best things we could have done. My mother was right. Giving Grace time — and believing in her — proved to be one of the most powerful steps we would take as a family.

Grace has made huge strides, thanks to many hours of early intervention programs and through her grade school, where she attends special education and regular classes.

She’s set and reached goals outlined in her IEP (Individualized Education Plan).

So I’m here to tell you that kids DO LEARN with cognitive delays and to encourage parents to never give up.

You are not alone.

The three Rs

Repetition, repetition, repetition.

Kids with delays — like all kids — benefit from doing the same things repeatedly. 

When you do something over and over again, it gets stored as information.

With Grace, we found that if we worked repeatedly with her on a task — and taught it the exact same way every time — she would eventually learn it.

It sounds so simple, but it was a revelation to us at the time. And every time she mastered a task, we were sure to celebrate her achievements, too! 

Rewards and recognition

Kids with delays, like all kids, can benefit from positive reinforcement.

It’s important to honor all the little victories — in any way you can. 

Earning time on an iPad and getting free time at school can be powerful rewards. 

For Grace, graphically illustrated charts that documented her progress toward her goals were extremely effective because they so clearly showed each step forward.

And give yourself a pat on the back, too. 

It’s important to focus less on the “bad” stuff, and start looking for the good, the positives. 

Stop as often as you can to recognize the good and praise it. You’ll find it’s amazing how the well things can flow if you take a new, positive perspective.

Kid being kids

A family member asked me the other day, if Grace wasn’t delayed, how would you react if she presented the same behaviors? 

Gosh, those words stuck in my head.

He was right. I needed to recognize that my daughter was trying to live in this crazy world, just like everyone else. 

When you’re parenting a kid with special needs, it can be easy to fall into the trap of associating any negative behavior with whatever special needs that child might be facing.

But children with delays, like all kids, enjoy getting attention, and it doesn’t matter if it’s good or bad attention. 

Sometimes a so-called negative behavior doesn’t have anything to do with a kid’s delays; it simply has to do with your kid just being a kid. 

Does that make it a whole lot easier?

Maybe not. 

But remember: You’re not alone. And the rewards for supporting your child every step of the way are absolutely worth it! 

Jennifer Schwertfeger is a Mankato mother of three girls and the author of Life With Grace: A Reference Guide for Parents of Premature Babies. Learn more at lifewithgracebook.com.