Louisiana writes of her son, Roberto Miguel, who is 11 and suffers from Down's syndrome, cerebral palsy, and heart problems, and the joys and challenges of raising such a child.
Roberto is a child who is about as complex as they come.
He seems to be making significant strides in some areas, but in others, he continues to struggle. For example, he is now 11, but he still can't tie his shoes or know when to stop interrupting people when they are trying to talk. Yet, he can now finally write his name in cursive, count to 20, and put his toys up when he is done playing. Or he can feed himself, but he can't run without having to stop and gasp for breath, thanks, in large, to his weakened heart.
Our son, Roberto, is now 11, but he has always struggled with health problems since we have had him. We adopted him from Mexico when he was six years old, and he was born with cerebral palsy that has left him requiring the aid of forearm crutches and leg braces for walking and Down's syndrome, which has left him severely mentally handicapped. At the age of 11, Roberto is more like a six-year-old. He also has heart problems, and his scarred up chest can attest to that. He has had several rounds of heart surgery (the last one nearly killed him), and he faces more in the future.
We always get scared whenever Roberto's heart acts up because we never know when we may have to call for an ambulance, and we are always scared that he will end up dying on us. Whenever his heart acts up, he gets severe chest pains, his face turns paper-white, and he sweats as though he has just competed in a marathon, and he chokes and gasps for breath. To help him, we make him lie down, and we hook him up to his oxygen and give him a pill to calm his rapidly beating heart; and we stay with him until his heart quiets down and slows. If it doesn't, then we call for an ambulance, where he is then taken to the hospital, so the doctors can check him out, to make sure he is okay. (He wears oxygen when his heart acts up, and he also has breathing treatments to help his lungs and heart.)
Because of his Down's syndrome, Roberto is short and stocky for his age, and he is mentally slow. He doesn't learn as fast as most children, and he acts a lot younger than most kids his age. He can be a regular little handful at times, and it takes someone with much patience to deal with him, especially when he has one of his temper tantrums. When he is mad, he will either throw things, scream uncontrollably (which does NOT sit well with his health woes), or worse, he will either throw his crutches at whoever so happens to be in the way, or try to hit you with his crutches. Or he will sit in the middle of the floor, rock back and forth, or bang his head on the wall until he raises huge welts on his face.
To deal with his temper flareups, we either put him in time out and say, "NO!" or tell him that he does NOT hit people with his crutches and that his crutches are NOT made for hitting people, or we hold him if he is especially agitated and try to calm him down before he has another one of his heart spells.
We do not try to upset Roberto any more than we have to because of his delicate health, so we have to be extremely careful on how we discipline him, or we try to discipline him in a positive light. We do NOT spank or hit our son, and we do not scream at him; this would only upset him further, and it may be bad for his heart (and for us). So how we discipline him relies heavily on tact and knowing that we can't upset him any more than he already is.
Roberto likes to eat (this is partly why he is so chubby in the first place; that kid is a human vacuum cleaner; he'll eat anything!), draw, color, watch tv, play with his toys, and be with us, his family. He is rather shy around kids or adults he does not know, and he is happiest when he is with us or is at his school. (He goes to a school for multiply handicapped students, and it is there where therapists and teachers work with him on improving his social, physical, and mental skills; and he also receives ongoing physical, speech, and occupational therapies.)
Many people may find Roberto ugly (that is, he drools uncontrollably and his tongue will often be hanging from his mouth, which is usually open), but we find him to be irrestably cute, especially when he smiles or laughs. His brown eyes tend to disappear when he laughs or smiles, and to us he looks like a little Mexican jumping bean with his brown coloring and lively personality. He still speaks both English and Spanish, and sometimes he'll speak only in Spanish until we tell him to talk in English; and he usually complies. (Good practice to hone our Spanish-speaking skills!)
Roberto has taught us much about patience, love despite severe physical and mental handicaps, the Hispanic culture and language, and tolerance; and he has also taught us that even though he may be seriously disabled in more than one area, he is still a charming little boy with a kind heart and impish personality. He is definitely a handful, but he is one child whom we would never trade for all the money in the world! He is more precious to us than all the gold or money in the world, and nothing can change that! EVER!
Let this coming of age story of a boy named Bean take you back to a simple time. Set in a small southern town in the 1960's, encircled by a river and gleaming white cotton fields.
