Alexander grew up as a motionless and silent child. Until the age of six months, my father hoped that everything would be okay, just some kind of accidental delay in development. Sometimes he would lie on the floor and make faces at the boy, trying to stir him up.
Sometimes, after numerous attempts, it succeeded. But these were rather exceptions. For most of the time, Alexander remained the same silent, with a stopped, absent-minded look.
The family lived in their home in Calgary, Alberta, Canada. Aside from the strangeness with Alexander, everything else was in order: a lively, active four-year-old daughter, a lively Siamese cat. When they began to deal with the youngest son, it turned out that he had a whole bunch of health problems.
He was born hypotonic, weight and height below normal, he could hardly hold his head. Heart murmur, hernia. Some strange folds on the ears, a large birthmark in the shape of the Latin letter V on the forehead. The child was shown to a specialist. He came to the conclusion that the boy had some kind of genetic disorder, but which one, he could not say.
Research continued at the Alberta Children's Hospital. The doctors called the parents a tricky and therefore even more frightening diagnosis. Yes, a genetic abnormality, not hereditary, just a random mutation that may have occurred during conception.
The disorder is very rare. There will be no more than a hundred cases in the world. This is called Kleefstra Syndrome, after the Dutch researcher who first described the disease. Effects? Development lag. Speech, movement, learning ability are all at stake. Can this be overcome? If you're lucky, you can, but you will have to work hard all your life.
This boy's name is Owen, he also has Cliffstra syndrome
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Parents drove from the hospital in deathly silence, completely killed by the diagnosis. Their child will never be able to walk, talk, frolic in the playground. Later, my father more than once caught himself indulging in fantasies: a miracle would happen, and Alexander would begin to catch up with his peers. Or someone will be found who can cure him.
But time passed, and there were no miracles. Until one day, when they were all sitting at the table, the boy's older sister came up to his chair from behind and began to sway, saying: "Hello, Mr. Chubby Cheeks."
Suddenly Alexander began to repeat her movements, shaking his head. His mouth stretched into a grimace. And then he laughed out loud for the first time in his life. And after him dad, mom and sister began to laugh.
The path to salvation
Parents seemed to wake up. It dawned on them that they had a "child with special needs" in their arms, and they needed not to grieve, but to do something. First, they turned to a local clinic, where they were given the simplest and ineffective advice: let the boy do the exercises, turn over, sit down.
According to the father, "it was like putting a plaster on a broken arm." But then the mother, who developed a vigorous activity, got to more competent specialists. She read a lot of literature about children with mental disabilities.
And I came across a book by Glen Doman "What to do with your child if his brain is damaged."
The author died in 2013 at the age of 93. During his lifetime, he founded an unusual educational institution in Philadelphia called the Institutes of Achievement of Human Potential. There to this day, using his methods, children with brain disorders are taught not only to walk and talk, but also to read and count, and - amazing! - sometimes they are ahead of their healthy peers.
Dowman began his career as a physical therapist in the 1940s. Initially, he worked with stroke patients. But later he switched to children with mental development problems.
He and his associates found a new approach based on the idea that the brain can grow and change if actively used. Today it is called neuroplasty. The clinic has collected a wealth of material confirming that children like Alexander can overcome the barrier created for them by nature, provided that they constantly and hard work with them.
The boy was first brought to Philadelphia when he was 11 months old. The clinic had dozens of little patients from all over the world - from Belarus, Singapore, India. Parents devoted themselves entirely to Alexander. They listened to lectures, did all the recommended exercises on special equipment with the child, developed him physically and intellectually, trained his breathing and coordination.
His room in their house has been completely remodeled. He climbed the Swedish wall, climbed the stairs. I studied cards daily, mastering reading and math. He had a special diet.
The parents made sacrifices. Mother, editor and radio producer, cut her career. My father worked from home. They have debts. But for them there was no greater happiness than hearing how their son pronounces one after another new words and sentences and masters the basics of mathematics.
Alexander is now seven years old. The parents no longer have any doubts that he will be able to learn like all children. Last year, he sat down at a desk with other preschoolers in a regular class.
If you can see something exceptional in this story, it is only that the father and mother of this child showed boundless love for him, perseverance and faith in success. Is everyone capable of this? Probably not all. However, families with “children with special needs” have a lot to learn.
She will not be able to deal with quantum mechanics, but you can live without it
Developmental abnormalities manifest themselves in a variety of forms - autism, Down syndrome
When 40-year-old Melanie Perkins McLaughlin became pregnant for the third time, she did a test to see if her unborn child had Down syndrome. The mother had every reason to doubt: in her age group, out of every 100 pregnancies, one can lead to the birth of a child with this ailment.
The result came at the most inopportune moment. She was shopping at the grocery store when her cell phone rang. The clinic reported: alas, the child will be "down".
Down syndrome boy
Stunned, Melanie put the cart aside and, not noticing anything around, wandered home. She pulled down the curtains in her apartment and threw herself, sobbing, onto the bed.
What was she to do? If she continues the pregnancy, her child will be, albeit in a small, but still quite noticeable group: with Down syndrome in the United States, one of 691 newborn babies is born. This number could have been higher if Melanie had not passed the test that modern medicine offers to expectant mothers. Upon hearing the bad news, nine out of ten mothers terminate their pregnancies.
Thus, the American mother today has all or almost all of the information she needs. It's only a matter of deciding whether to give birth or not. But if not to give birth, then why? Is it because of the grief that parents will experience, or because of the difficulties that await a child with Down syndrome in the life of a child?
In a recent study, 99% of more than 2,000 parents surveyed said they love their sick children. Only 4% expressed regret that they had given birth to them.
As far as difficulties are concerned, great efforts have been made in America to alleviate them. Half of all down babies are born with heart defects. However, surgical technique has made it possible to correct some of the routine defects. And now the life expectancy of people with the syndrome has grown to 60 years, while in 1983 it was only 25 years.
Thanks to pedagogical interventions in early infancy, more and more sick children attend regular schools. Teens go to college. Many get married after 20 years. That is, now children, who were previously uniquely flawed, integrate more easily into normal life.
“Now is the time to have children with Down syndrome,” says Amy Julia Becker, author of A Good and Perfect Gift, which follows her life with her 6-year-old sick daughter, Penny. "There is some irony in the fact that early recognition became possible precisely when living with this disease became easier than ever before."
Boy with autism
And how did the story with Melanie McLaughlin end? The test result came in the 20th week of her pregnancy. Under Massachusetts law, the deadline for termination of pregnancy is 24 weeks. The couple still had time to think. They met with two familiar families, in which there were children with "down".
In one, a girl named Anna played with McLaughlin's children. Yes, she was shorter than others at her age, and there were other signs of delayed development. However, Anna generally behaved like a reasonable and agile child.
Another girl, Amanda, was more behind and had serious speech problems. But in both families, children were loved as if they had no defects. Both Melanie and her husband, after long deliberation, decided to save the child.
They never regretted it. Their daughter only learned to walk at the age of three, and her speech is slowed down. Melanie and her husband began teaching the child sign language when Gracie was six months old. This stimulated her thinking and opened up the opportunity to master an alternative way of communication. By the age of two, Gracie had mastered 100 characters. Her grandmother, who was impressed by the girl's quick wits, even doubted and asked Melanie: “Are you sure she's down?
Unfortunately, she still has an illness, but now it does not bother her parents at all.
“She certainly won't be able to do quantum mechanics,” says Melanie. "But I also live without knowing this subject."
Other parents tell similar stories. Penny, daughter of Amy Becker, the same girl who became the heroine of the book A Good and Perfect Gift, knows all the letters. She learned to read in an ordinary kindergarten class. She loves pizza and dances well.
"Will she be able to live a full-blooded life without solving quadratic equations and without reading Dostoevsky?" The mother asks herself. And he replies: “I'm sure he can. Will I be able to live a full life without learning to love her and not accepting in this world those who are not like me? I am convinced that I cannot."