Her War: The day the dream died

What goes through the mind of a parent in the moment when they find out that their child's difficulties are not "a phase" or something she'll grow out of? What are the thoughts of the captain of a tiny vessel with a crew of four struck by a hurricane? 

This mother sat in a park outside City Hall to hear the verdict of the specialist over the phone. The child, who she called Chickadee in moments of tenderness because she came one spring eight years ago to save the mother's grieving and broken heart, was with her. The mother made Chickadee sit on a bench a little distance away and gave her a tablet with games to play--a rare treat to keep her occupied during the call with the psychologist.

Creative Commons image by Paul Stainthorp

She was too young to overhear her own fate.

"I disagree with the findings of the previous report on her intelligence." Those were nearly the first words spoken over the cell phone.

The mother's heart leapt with momentary hope. She held her breath, waiting to hear that the child who had brought such joy and then so much chaos and conflict, was troubled, learning disabled, hyperactive BUT exceptionally bright. How many times do you hear such stories. She would fight for such a child, fight with every last reserve and--by all that is holy--they two would win. 

The next words hit her like a sucker punch. "In some areas she has average intelligence, but in many areas she is far below average. She may have the symptoms, but to be diagnosed with dyslexia, there has to be a certain minimum intelligence."

The mother kept notes, scratching at a notebook, frantically trying to record the specialized terminology, even though she would receive a written report. It felt like the only thing to do. She knew most of the terms. She had done piles of research already. She was one of those parents, the kind that take a threat to a child as a call to arms. She would document, read, discuss, advocate anything into submission.

"Very low scores in visual/spacial skills. Very low auditory processing, and short term memory is far below normal. That goes along with the attention disorder," the psychologist is not dry on purpose. She is hurrying between meetings, giving this mother as much information as she can in a short space. Her interjections are friendly, checking to see that the mother is following and not drowning in the information.

She says she is fine. She has the notes down, and she understands the terms from her research. 

But she is drowning. She doesn't know it yet, but she is drowning as sure as the captain of the tiny swamped vessel at sea--gulping in mouthfuls of brine and salt spray.

"She is very immature, half her chronological age. If she was four or five and she behaved this way it would be fine. She is very impulsive. She will need constant attention, careful monitoring at every moment."

The mother looks up and sure enough the child is not on the bench where she was supposed to wait. She gets up, turning around in the dappled sunlight of the park. The light and shadows blur before her eyes. She feels sick.

"She will have great difficulty copying from a blackboard. She cannot understand auditory instructions or information of any significant length. She will not understand lectures or audio books. She will always have difficulty reading. Yes, she should be tested for dyslexia anyway, but she may not have the intelligence for that diagnosis." 

The mother wonders if she herself will fall to the ground, but she doesn't. She walks by instinct. She knows where the child's impulses will take her. She has spent eight years connected symbiotically to this child. She knows her better than anyone else. She notices the path the child's distractable brain would grasp at and she goes down it. She finds the child on the steps by the rushing traffic. 

Safe. For now. No one picked her up this time.

"I recommend a psychiatrist, special education services, testing for reading disabilities. There may be medication for ADHD. You may be able to apply for educational accommodations.. The one positive thing is that she has some episodic memory. Sometimes I see individuals who can't remember much of anything. She can remember those things she experiences, but she will not understand anything abstract."

The call ends politely with tasks assigned to both sides and assurances of further contact. The mother takes the child's hand and they hurry from the park with promises of ice cream. 

That very afternoon, the school holds a ceremony, graduating the first graders as "readers." A local children's author visits and places wide turquoise ribbons over the children's heads. The children sing and the parents clap. Chickadee does not perform a poem alone, but a friend helps. They have developed hand motions to go along with it. 

Then the results of a standardized test are put up on the screen in the classroom. Reading and comprehension scores. The class is one gentle curve--some a bit below average but more than half well established as strong readers. Only one is the far outlier, far behind the others. 

She's a pretty girl with striking eyes. She stands in the middle of the class with their proud reading ribbons. But she cannot read much. She may never get beyond that stuttering, gasping pace. 

Only the mother knows which child the outlier is, silent in the crowd of parents. Most are quietly relieved. It is not their child left behind. Some are vocally disappointed, their children below the average line. They promise extra rigor at home. They are troubled and motivated to work harder. No one wants to think about the outlier. 

What goes through this mother's mind?

Grief.

I looked forward to showing her the wonders of facts, history and geography. She has no interest and cannot grasp even the beginnings. I dreamed that we would do art projects together. She grabs the supplies and smears them in a random mess, shouting, “Look! Isn’t it great? Clap for me!”

The dreams are gone. The chipper, inspirational quotes about overcoming disability are lies told to absolve the rest of the world of the need to feel compassion.

Despair.

I love to read stories to my children. She doesn’t want stories. She doesn’t understand and has no interest in anything with depth. I can’t read to my son because she is screaming and destroying the house. My son isn’t disabled and yet his bedtime stories are curtailed.

Aching boredom.

Endless days of baby talk and the toddler in a child’s body that changes far too slowly if at all. Teaching the same simple things over and over day after day for years and years and years--knowing it is futile and that very little you do will ever make any difference.

Heavy exhaustion.

Serving and supporting her incessant, second-by-second needs means both parents are in deteriorating health and the second child, who is six, is mostly on his own. He has to be better than other kids, take care of himself, do with far less attention and grow up fast.

Utter isolation.

I’m supposed to be positive and “inspirational” as a parent of a child with this kind of disability. I will only be judged. No one has any interest in the reality.

I will never be one of those parents with older kids who can get back to their own life. I will never have time for myself again.

Fear.

“Dysmaturity” will mean she will never grow up but she isn’t disabled enough to be recognized as developmentally disabled and so protected as an adult. Extreme impulsivity will make her very vulnerable and a target for every scammer and abuser. She will be in debt. She may well be homeless unless she lives with me. She has no mental ability to plan even the most simple steps. She will never be able to plan how to prepare for school or get transportation to a job or cook a meal with more than one step.

The chaos of our daily life is not “a phase.” It is the way it will always be. It is unbearable and it will never stop.

Terror.

I know the fashionable thinking in the circles of disability rights is that disabilities, particularly neurological disabilities, should not be considered negative. They just exist, neither good nor bad. In a better world, we would all be "normal,"despite our differences.

Chickadee is a girl. She is not bad. She is not to be pitied. It is not her fault or a shameful thing.

But this is a disability. She cannot do all things. Without the blocks and missed neuro-pathways, she would have many more choices in her life. She may well have plenty of joy, if she is well sheltered by a family that designs an insular world to fit her needs. But let's face it, she will not have the choices others have.

Let us be honest about this. When a parent learns that a child has such curtailed choices a dream dies.