Andrew is different. 35 years ago he would be labeled “retarded.” He is not autistic, because he loves social engagement. He does not suffer Downs’ Syndrome because his chromosomally intact. But Andrew has a cocktail of conditions that make learning and comprehension a genuine struggle for him every day.
He loves going to school, church, and Cub Scouts. As the child of two “highly-educated” parents, and as a sibling to an “academically gifted” older brother, people who know our family in passing have high expectations of Andrew. Strangers expect nothing but “normal” behavior out of him. This is because he doesn’t look disabled. He looks “normal.” But this belies the physiological (not psychological) problems in his brain.
20/400+ vision, Bi-Lateral Amblyopia, and Dyslexia
We didn’t realize until he was starting kindergarten that our son could barely see in front of his face. Even the pediatricians missed that one. His Pre-K teachers thought he was “sweet” because he always sat very close to them. We realized only later that it was the only way he could see what they were teaching. The emotion on his face in the first few days after getting his first glasses put emotion on my face. At the age of six, he was only seeing the world for the first time.
Now, what is “Bi-lateral Amblyopia?” you may ask. The American Journal of Opthamology published a detailed study that explains it in more detail than you probably care about. But you should read it and learn. “Traditional” amblyopia is usually easily diagnosed by the “wandering eye” but in Andrew’s case he has it in both eyes (bi-lateral), keeping them looking normal, masking that he’s effectively cross-eyed with two negatives attempting to offset one another. So exacerbating his poor vision is his inability to scan across the field of view the way “normal” people can.
Since infancy he has been read to nightly at length. But if his eyesight problems aren’t bad enough, Andrew shows symptoms of dyslexia. To him letters and numbers are often flipped, reversed, or jumbled, requiring extra concentration just to make sense out of the information in front of him.
The three of these conditions working together … extreme nearsightedness, in ability to make the eyes work together, and not processing written language make a perfect storm of comprehension challenges. As if the intake issues weren’t enough, expression is equally hampered with …
Speech-impediments and delays
Most of us take for granted that our children can tell us what they need by the time they are three. He has been in speech therapy since 2 (when he wasn’t talking at all), yet at 9-years-old, he remains hard for others who don’t “speak Andrew” to understand. Most of his great frustrations in life stem from his inability to communicate clearly what is in his head. There are occasions where even after repeating himself several times I — his own father — cannot understand what he is talking about.
Impaired cognition and processing delays
When given information or instructions, they do not always register, or register quickly. Most with a child understand they have to tell them to do things multiple times to get them to comply, but this is at a wholly different level for a wholly different reason.
The chief result is poor marks in school. The standard method of testing students — long, wordy questions followed by a series of possible answers deliberately worded to prompt attention to detail or “trip you up” — are lost on him. This is in spite of actually comprehending the material and demonstrating mastery of the concepts.
It would be easy enough to call Andrew clumsy. That he is uncoordinated, trips frequently, and took until he was 9 to learn to ride a bicycle could be overlooked as nothing big. But because his brain and his muscles are often at odds with one another, simple everyday physical tasks like jumping, speaking clearly, and gripping a pencil become an ordeal. Occupational Therapy, both in the classroom and in private practice have helped him improve “crossing the midline” and his impaired fine motor skills.
We all know what this one is by now. When earning my psych degree I was concerned about the alarming rate of ADD/ADHD diagnoses. Working as a camp counselor some 25 years ago I saw first-hand the real cases versus the ones where parents would put their children on meds to simply control their behavior. I’ve been critical of the latter and know what I’m talking about when it comes to the impact this very real diagnosis has on Andrew. A head full of “white noise” makes it nearly impossible to concentrate long enough to formulate complete thoughts. Even the “little voice inside his head” gets drowned out. Fortunately new breakthroughs in ADHD medication have given Andrew some ability to cut through that and hear his own thoughts.
What this means to a parent …
My greatest regret is that as a father I could not see this sooner, because the signs were there, just not obvious to us. And because causality can’t be determined I will always question if I did something wrong along the way.
My second greatest regret is that as the main income-earner in the household, I have looked to my wife Ellen and his school to deal with most of these problems. It’s unfair to her writing career that we take advantage of its flexibility in this way. I give thanks to his school for giving a disproportionate amount of support to him to help him learn despite his problems in reflecting that learning in his test scores.
My greatest consolation is that I have focused on Andrew’s spiritual development and his development as a Citizen by raising him to be active in our Church and in Scouts. Here he has found an environment where he doesn’t struggle so much. Here he has found an environment where he succeeds. Here he finds a sense of belonging. Here his challenges can be overcome and he can be a productive member of society.
Andrew is a good child. He may be different. He may be challenging at times. If you work with him, he may even test your patience as he can mine. But he is a child of God who works hard at improving himself and giving back to the community. If he didn’t want to be a Scout I wouldn’t force it on him. If he didn’t want to go to Church I wouldn’t force it on him. There is goodness in him that no Standardized Test can measure.
I held off on posting this until after the 2016 election because I did not want to politicize my child or his condition. Given the results of the election, I fear I made a mistake in taking the “high road.”
I became vocal part of the #NeverTrump ideology when he mocked a disabled reporter not for his views but for his disability. Now that Trump has inexplicably been elected to lead our country, how do I teach my learning-disabled child to show him the proper respect? We are supposed to salute the office, not the man, but almost half of this country chose Trump as their representative and he stormed the Electoral College. By choosing Trump, in sharing his antichrist values and beliefs, by proxy each of his voters have mocked, insulted, and denigrated my learning-disabled son (two links there … don’t miss them). Each Trump voter chose the candidate that insults disabled people he calls ”retards.” The candidate that believes celebrity entitles him to “move on [women] like a bitch” and “grab them by the pussy.” (But only the hot ones that rank a 10 on his scale.) The candidate that wants to build walls instead of bridges, both figuratively and literally. These voters have issued a referendum against socialized medicine that protect pre-medicare citizens who cannot insure themselves. Trump tapped into despair over a society gone all politically correct, afraid that immigration has eroded the white tower of power that existed in the the “good ol’ days” of the 50s (you know, the days of Jim Crow laws and before that pesky Equal Pay Act). These voters have confused themselves in their perceived plight with the least and last and lost that Christ taught us to care for.
So I ask each of you:
Is my son a drain on your tax dollars because he receives special services from the county? Is he holding your children back when his teachers try to mainstream him into the classroom, and thus into society and turn him into a productive member? I have come to grips with the notion that Andrew may never “launch.” As long as Ellen and I live, he may live with us. But what happens when we are gone? Would you hold his older brother responsible for him? Will you see him as a drain on society? Will you quietly tuck him away into a state-run facility that is run like a prison? Or worse, into the streets?
Andrew is special not because he is disabled. Andrew is special because he remains cheerful in the face of difficulties doing the everyday things that the rest of us take for granted. Andrew is special because he, like you and me, is a child of God and should not be dismissed because he is different. I’ve learned much from him. We all could.