A little boy with Down's syndrome struggles to be accepted by society; this story is written by his mother, Louisiana.
My son, Roberto Miguel Joseph, is now ten years of age, and he has had to live with heartbreaking disabilities since the day he was born.
Note how I put RoBERto, and NOT RoberTITO. He has decided his name is now RoBERto, and NOT RoberTITO. He has decided that his name is Roberto, and that is THAT. He used to be called Robertito, but now he is called RoBERto.
Roberto is mentally disabled because he has a chromosomal disorder known as Down's syndrome, which is one of the most common types of mental retardation caused in young children. He is ten, but he functions at the level of a four-year-old child, and he is slow to learn new things. He also has some of the distinguishing characteristics of the syndrome: stubby, short fingers, a round, compact body, shortness of height, a round, moon-shaped face, uptilted eyes, a snubby nose, and a tongue that seems much too large for his mouth. Because of this, he has trouble with his speech, and he tends to drool uncontrollably at times.
In addition, he also has heart problems, and he has had several major operations on his heart (and still faces more in the future, the last one being three years ago; he nearly died, he was so sick, but somehow, he pulled through). At times, he gets chest pains, and he gets all sweaty, pale, and dizzy, especially if he gets overheated or too excited, and for this reason, we have to make sure he doesn't get TOO excited. If he does, we then give him a heart pill or a nitroglycerin tablet, and that calms him after a short while. If it doesn't, then we have to call the paramedics and have them send an ambulance to our place.
Roberto also has physical disabilities in addition to his mental problems. Besides his heart troubles, he also has spastic cerebral palsy in his lower limbs, and because of this, he wears leg braces on his legs, and he walks with the help of forearm crutches.
Due to his disabilities, Roberto attends a special school for multiply handicapped children. He is now in the second grade, and he is doing as well as can be expected.
Roberto loves many things, but they are things more geared for younger children around preschool age. He loves the tv show "Barney" and can sing the "Barney" theme song from memory (albeit decidedly off key), and he also loves "The Berenstein Bears" and "Caillou". He also loves to play with his blocks and with his toy cars and trucks; and he especially loves his toy firetruck, where he can ride it. He often pretends he is a fireman, and this is what he has told us what he wants to be when he grows up. He also loves music, all types, but he likes country and Cajun music the best. He also loves to eat (which is one of the reasons why he is rather pudgy in the first place; he especially loves Mexican and Cajun dishes).
He may seem like a normal boy in some ways, but in more ways, he is NOT. He is slow to learn, and he still must rely on different therapies or exercises to help improve his motor, physical, cognitive, and mental capabilities. He goes to physical and occupational therapy twice a week at the medical center, and he also has speech therapy to help improve his speech. He also has to go to his doctors every month, to make sure his heart is doing well, and also to keep his health in check. He is susceptible to colds or respiratory ills, and when his heart is acting up, he has to wear oxygen at night as a precaution. (He has an oxygen unit in his room that he uses at night when he goes to bed.)
Roberto is a very handsome young man, with a round, tan face, uptilted eyes of dark brown, a snub nose, and a bowl-shaped haircut. His hair is thick, and it is shiny blue-black; and it just shines in the sun. He looks like one of those adorable Mexican cherubs one would find on a picture postcard or in a magazine about Mexico.
Behaviorwise, Roberto is usually a good kid, but he DOES have his moments where he will raise a fuss; and at times he has been known to hit people with his crutches or bite. We are working hard with him on this to try to get him to stop doing these annoying habits. Or he will run off when we least expect it, and several times, he has run into the street, where he has nearly gotten hit by a car; and it is for this reason that we have him attached to a leash, so he can stay with us and not run off, where he may get into trouble. We worry that if he did run off, he may have trouble with his heart; and what would happen to him THEN?
I often worry about how long Roberto will live to be because many Down's syndrome patients, especially those with heart problems, don't live as long as most people; but as long as he gets the needed care he needs, he should be around for a very long time to come. I certainly hope so because he is certainly one in a million!
Roberto...you gotta' love him! Because I sure do! :)
i love reading your stories, and learning about the character...you describe them so well, and in such meticulous detail, that one can almost see him or her...in this case, him LOL...well done, (((karen)))! (((HUGS))) and love, karla. :)
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