Help and Hope During a Disability Diagnosis: The Story of Hannah

I’ve never been able to have a sit-down conversation with my daughter about her emotions. Lucy’s brain just doesn’t work that way.

While grief is a natural part of any special needs parent’s journey, it’s experienced differently by parents affected by Autism because of the range of possible outcomes. Many children with Autism grow up to be well-functioning adults. Most of these kids experience the social and communication struggles of Autism without intellectual delays. However, just over half, 56 percent of children with Autism have an intellectual disability as well. Our daughter fits within this category, but when she was three years old, we couldn’t be sure. So, we wrestled with conflicting possibilities for her future—possibilities that were and are outside of our control. 

 

Eight years ago, our middle daughter, Lucy, was diagnosed with Autism Spectrum Disorder, ASD. Lucy is profoundly affected by Autism. Her sensory processing and cognitive function is severely delayed. It wasn’t until a little over a year ago that we finished toilet training, and we still help with most of her daily care tasks. We—usually my wife Megan—brush her teeth each night. And unless it’s Thursday, when we eat spaghetti, Lucy is not all that interested in food. So, we have to spoon feed or prod her to take another bite every 30 seconds or so.

These sorts of parenting tasks are normal for a toddler, but Lucy is 11 years old.

I’ve never been able to have a sit-down conversation with my daughter about her emotions. Lucy’s brain just doesn’t work that way. On the cold February day that Lucy was diagnosed, the psychologist told us the verdict, and then, with a deadpan expression on her face, she told us that 80 percent of couples who have a child with special needs get divorced.

I’m happy to report that the veracity of that specific statistic has been questioned in recent years, but studies show that the divorce rates among parents of children with disabilities are higher, and the risk of divorce lasts longer into adulthood than for parents whose children don’t. In that moment, we took the doctor’s words at face value. She essentially said to us: “Get help now!” Megan broke down crying immediately. What she had suspected for quite a while had been confirmed, and now she was grieving. Our life had changed. We’ll likely be caretakers for the rest of our lives.

While grief is a natural part of any special needs parent’s journey, it’s experienced differently by parents affected by Autism because of the range of possible outcomes. Many children with Autism grow up to be well-functioning adults. Most of these kids experience the social and communication struggles of Autism without intellectual delays. However, just over half, 56 percent of children with Autism have an intellectual disability as well. Our daughter fits within this category, but when she was three years old, we couldn’t be sure. So, we wrestled with conflicting possibilities for her future—possibilities that were and are outside of our control. Leading special needs ministry author Amy Fenton Lee writes about this predicament:

Should a mother grieve the life she envisioned for her child? Or should she buckle herself in for a bumpy ride. . . remaining hopeful and doing everything humanly possible to help her child reach their full potential? Sadly, the pressure is great to keep silent and process her emotions alone. Conversely, if she grieves publicly or openly conveys her concerns she may shape others’ view of her child. In fear of creating a self-fulfilling prophesy for her child’s future, a mother may remain tight lipped avoiding conversations revealing her daily realities.

As you can probably imagine, the way most parents of young children with Autism respond can vary from day to day. They experience conflicting emotions of grief and hope. Some days are filled with more sadness; others have more determination and hope. It’s certainly been this way for us.

A Privileged Man and his Suffering Wife

Recently, I’ve been processing the way our family grieved while studying the story of Elkanah and Hannah in 1 Samuel 1:1-20. As you jump into this passage, you see right away that Elkanah had a lot going for him. Elkanah had a legacy; his family heritage could be traced back four generations (v. 1). Elkanah was ambitious and wealthy; he was a man with enough money to pay two dowries and then support two wives and their kids (v. 2). Elkanah was also a religious man; he committed year after year to bring his sacrifices to the Lord’s tabernacle in Shiloh (v. 3).

The passage tells us that Hophni and Phinehas were the priests in charge of running worship services there. One chapter later, we discover that these guys were regular scoundrels (1 Sam. 2:12). When the people of Israel brought their sacrifices to Shiloh, they would steal some of the best cuts of meat for themselves instead of offering them to God.

By contrast—and I believe the author of 1 Samuel wants us to notice this—Elkanah carefully provided good food for his wives and kids. He was a caring provider and a family man. In his own day, he was the kind of man you’d want to emulate. But Elkanah’s wealth, his religious devotion, and his diligent care for his family couldn’t insulate him from suffering.

God brought suffering into Elkanah’s life through his second wife, Hannah. Verse two introduces us to her suffering in a matter-of-fact way: “[Elkanah] had two wives; one was called Hannah and other Peninnah. Peninnah had children, but Hannah had none.” Hannah was infertile. It wasn’t just that she didn’t have children. Hannah couldn’t have children. In verse five, the text says, “the LORD had closed her womb.”

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