Special Needs and a Charlotte Mason Education

Four months into the elation of caring for our first-born son, we got a call from his pediatric neurologist. She read to us from an old textbook because she had never diagnosed anyone with Joubert Syndrome before. And in one phone call, we heard a mixture of these phrases: "Possibility of hearing loss, vision loss, organ failure, seizures, intellectual disabilities. He may be non-verbal, non-mobile, and tube-fed."

Our world changed forever that night. My husband and I cried ourselves to sleep, holding each other, utterly clueless at what the future held for our precious infant boy.

The next few months and years held the grief of navigating all of the unknowns while trying to figure out what our son needed. Our days were filled with therapy of every kind and visits with all the medical specialists and calls with insurance, while crying out to the Lord during the restless nights of trying to figure out his sensory issues that made sleep difficult to say the least.

The months and years passed by and we saw His goodness and grace, especially in the darkest valleys. With every discouraging doctor's appointment also came the joy of celebrating his milestones. He started speaking at age 3 and walking more independently at age 5. He finally was able to sleep without injuring himself throughout the night.

We discovered that the specialist read his diagnosis to us from a dusty textbook, but it was his Great Physician and Creator who held the days in His hand.

Even before he could talk, we knew Marcus was obsessed with music. He could point accurately to all the obscure instruments in all the books and he lit up any time we played music...especially classical. The only toys he wanted were the ones that looked like real instruments.

When we pulled him out of the public school after 1st grade, and learned more about the Charlotte Mason philosophy of education, we found that the foundation of stories and music and poetry and art was exactly what fed our family in the right way. And the practice of narration exercised his mind and his verbal processing in ways that I'm sure I don't even fully realize.

To tell back to me what he was feeding on...was no small challenge. But the years and years of practice...starting with the shortest of phrases, helped him not only develop his communication skills, but taught him how to LEARN. Instead of the score of a standardized test, the true assessment was what grabbed his mind and ordered his affections.

And yes, our weeks were filled with hours of physical, occupational, and speech therapy, plus learning Braille and practicing the use of his white mobility cane. But our education was full of all that was true, good, and beautiful, no matter what the future held.

And those mornings of meditating on Proverbs, discussing election, memorizing Shakespeare, giggling at A.A. Milne, and staring at Rembrandt, were a true feast. It didn't matter what age each of my kids walked, or if they could ride a bike, or whether they had a blood test scheduled later that week. We all fed on the beauty of all that is under His creative handiwork. And it was good.

Anyone loving a child with disabilities or a diagnosis knows the utter grief of seeing your son or daughter suffer. The helplessness of wishing you could take on their trials on their behalf, but having to relinquish it all to the Father. Because in the mystery of suffering...He is still good and loving and absolutely in control. And He loves our children more than we ever could.

Even through mourning...we still have to parent and provide and educate. We get no days off, and so we wipe away tears to joyfully make the lunches and read aloud. And now that I look back on those sorts of days, I see what a grace those homeschool days were.

Grief and beauty all rolled into one. Just like death and resurrection. It all comes as one gift, incomplete without its parts. He truly allowed the years of pain to be marinated in years of joy. And so I thank God.

I pray for you, if you also bear the weight of a loving a child who has been given a special lot. That your heart will be filled with the beauty of His grace even amidst the mourning. In many ways, the colors are even more vibrant, the words on the page more profound, the music even sweeter, when we sorrow.

The reason why I was prompted to write all this (with Marcus' permission) is because by His grace, our amazing son just completed his first college application last week. He plans to major in Music Composition and live in the dorms...the first of our kids to live independently from us. And providentially, as I write this, he's practicing Gymnopédie No.1 by Erik Satie for his scholarship audition. (French Feast students know why this is special.)

Our whole family is in awe...of our amazing Father...who holds each of our lives in His hand, where our names our written.