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Personal Stories

I'm never sure what to expect anymore

By: Michelle Sarabia

“What a beautiful boy!” My son was nearly nine pounds, and yelled for 20 minutes before falling asleep. Then they said his blood sugar was too low, and they filled him up with sugar water. I wonder about that first day, and a later diagnosis of arcanthosis nigricans, where excess insulin stains the skin.

The doctor said, “Your son has low muscle tone. But don’t worry. He’ll grow out of it.”

My son cried frequently, and rarely slept. His longest nap was at dinnertime. I didn’t remember what sleep was like. “Don’t worry,” the doctor says, “your son’s colicky. He’ll grow out of it.” I hardly notice anything but small fingers wrapped around mine.

My son sits up at 9 months. He speaks at 15 months. The doctor says, “Some children take longer.” Other doctors examine him. Our son’s behind, they say, but nothing serious. He doesn’t look at the eye chart. I’m told the kindergarten vision screening will cover it. Obviously, he does respond to visual stimuli. They say, “Don’t worry.” No one says, “Developmentally delayed.”

I read to him, but he loses interest quickly. Once in a while, I find him absorbed in book illustrations, telling himself a story. I guess he doesn’t like my reading.

I work full-time, and take classes. The daycare tells me how wonderfully he’s doing. He’s late to potty train, but he’s doing activities and getting along with the others. Then a new teacher calls. “I don’t think your son’s ready for kindergarten.” She shows me papers. Other students have precise “9’s” marching across their pages. His look like wobbly balloons.

I know that he can’t be turned away from kindergarten. I tell the principal about under-inflated “9’s.” I tell him the doctors don’t seem concerned, but the preschool teacher does. The principal says that it’s better to wait until kindergarten. I didn’t know about family service plans. All I knew was “Don’t worry.”

The school nurse calls after the vision screening. “Get him to an eye doctor!” I’m shocked when the doctor says that my son is severely farsighted, and also doesn’t track. We look at therapy. Our private insurance it’s a developmental issue; have the school take care of it.

That night, my tears change from uncertainty to despair.

School therapy requires special ed qualification. I request an evaluation. The teacher keeps the papers for months, claiming she’s too busy. Then central office loses them. Finally, he’s tested late that spring. There isn’t enough difference between his IQ and his achievement; he doesn’t qualify. My son sits in a classroom corner, snapping crayons and staring into space. They claim he’s just not trying. He also has problems with keeping clean. The kids call him “skunk.” We send wet wipes and ask that he be supervised. The teacher frowns, “It’s not my job to wipe bottoms.”

Over summer, we focus on being a family. We celebrate our daughter, born that February. She and her brother dote on each other. Maybe first grade will be better.

First grade is better. God bless that teacher! She quickly refers us to an expert at a university hospital, 250 miles away, who provides a diagnosis of inattentive ADD. He also warns us that our child may have more serious disorders, which may become evident later.

We change to a doctor with a reputation for dealing well with special needs. We contact a parents’ advocate program. We get an independent evaluation. It shows a perfectly average IQ, and massive processing problems. Later evaluations validate this second test.

Second grade was in an excellent self-contained classroom. Privately, our son got therapies for sensory integration, visual tracking, balance, strengthening, intoeing, and lisping, after school, four days a week. Thankfully we qualified for Medicaid.

We learned to watch the school closely. Our son started third grade in Resource Room, because his old class was full. The students rotated every half hour. The classroom was shared with another class. My distractible son stressed out. He started bed-wetting. At the threat of due process, they move him back.

During that summer, we find out that our son is seeing ghosts and hearing voices. The diagnosis is psychotic disorder NOS. I’m never sure what to expect anymore.

The new 4 th grade special teacher was totally incompetent. It was his first year, and he’s on a waiver. Our son isn’t working in class. The OT recommends light physical activity to help concentration. The teacher fills a backpack with books and makes our child run around the school repeatedly. We howl. So do other parents. The teacher is not rehired.

I finished my degree, and was hired by the same district my husband works for. We carpool, while juggling our children’s schedules, until December. It was too much. We moved 50 miles. We also came armed with an eternity of experience, specific diagnoses, and a Master’s degree in special education. Our son entered a new program with an excellent teacher

Last summer, our son picked off his fingernails and developed a staph infection. We added OCD to his diagnoses.

The challenges will never be over. At Scouts, we all applaud inventions. I call my son up. His robot, that he worked long hours over, is a wilted affair of crumbling Styrofoam, wobbly straws, and a shattered paper cup. I get puzzled looks. The next boy demonstrates a beautiful catapult for launching beans. My son’s invention is forgotten. I hug him afterwards. In his mind, his robot ranked with the other inventions. At home, he makes another.

Next school year, our son enters 6 th grade. He’s into prehistory, Scouts, and computers. We struggle to teach him basic self-care, and scrutinize his scabs for infections. We can deal with hallucinations, panic attacks, and notes from school without batting an eye. We glory in his curiosity, compassion, and imagination. And when we see him knapping rocks, playing with his sister, or gardening, we are comfortable with the idea that he will never grow out of it.