When Joshua Rivas was not making any intelligible sounds by the age of one and one half, the pediatrician suggested that Sharon and Nelson Rivas take their son to a neurologist for a full behavioral evaluation.  The neurologist ordered a blood test to check for fragile X syndrome.

"I had never heard of fragile X until Joshua was diagnosed with it," recalls Ms. Rivas.  "Anytime someone is diagnosed with a serious condition you get kind of worried, and Joshua was young."  Rather than allow fear to overwhelm her, almost immediately, Ms. Rivas began to gather as much information as possible about fragile X syndrome.  She quickly learned that severity of the condition varies with each child.  She learned too, that children with fragile X syndrome often exhibit autistic like tendencies.

At the time of Joshua's diagnosis, the Rivas family was living in New Jersey.  Shortly thereafter, Joshua started receiving physical, occupational and speech therapies at home through Early Intervention services.  Because fragile X syndrome is a genetic disorder, the neurologist suggested that Joshua's sister, Kaetlin, just a year younger than her brother, be tested for fragile X.  That test too proved to be positive.  Kaetlin began receiving speech and occupational therapies at home through Early Intervention services.  In 2003, when the family moved to Nyack, New York, both Joshua and Kaetlin were enrolled in Prime Time for Kids, a program of the Rockland County Chapter of NYSARC, Inc.

Although neither Joshua, now four years old, nor his sister, three, is verbal, their mother says, "They comprehend just about everything.  Recently both children underwent a surgical procedure through which tubes were placed in their ears to prevent frequent infections.  "One of the doctors told me that the fluid in their ears had been making it sound as though people were speaking to them from under water."  Ms. Rivas says that since the surgery, both children are making a greater effort to speak.  "My hope is that eventually they will have speech because at times, communication can be difficult."

Ms. Rivas says she is "extremely happy with Prime Time for Kids."  For the moment the Rivas' have not arranged for supplemental therapies beyond those that the children receive during school hours.  Both parents work full time.  Ms. Rivas works in the technical operations at Novartis Pharmaceuticals in Suffern.  Mr. Rivas is a supervisor at Wyeth Pharmaceuticals in Pearl River.  "In the future we may look into arranging for additional therapies after school at home."  says Ms. Rivas.  This mother believes that her own positive attitude goes a long way towards helping her children.  "I went through so much to have these kids.  And fragile X or not, they are my kids.  If I think in a negative way, if I think, 'Why did this happen to me?' or 'Why did this happen to them?', then I won't be any good to them.  I have to stay positive.  I have to try to do whatever I can do.  If you look at my children you would not know that there was anything wrong with them.  They walk, they jump, they play.  They get into everything.  They may be not be learning things at the rate that most children are learning them. It may take them longer, but I see that they are learning and progressing.  They are doing it in their own special way." 

Reprinted with permission from ARCLIGHT Magazine, published by ARC of Rockland.