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47 XXY - Challenges for a child
Time for School Already?
Matt is a very special little boy. He has a chromosomal difference, 47 XXY or Klinefelter Syndrome. He was diagnosed through amniocentesis before his birth. As my fourth child, many of the developmental milestones that wouldn't have been as amazing as they are with your first child (yes, we all know this is true though we don't like to admit it) were huge accomplishments and definitely worth celebrating. The differences that Matt has made in our lives and our family make me grateful every day that I did not listen to the first doctor I spoke with about my amnio results.
At age 3, children in the birth to 3 program transition into the school system. They receive any necessary services (those developmental areas where they are delayed at least 20%) and if they are delayed 20% in at least 2 areas they qualify for a the special needs preschool. Our team was concerned. They felt that the reason Matt had done so well was that he had been receiving services since he was 2 months old. The only area that they really felt he was delayed enough to qualify was in speech, but they were hoping that it would be apparent that if he was not getting therapy as intensively as he had been, he would not be keeping up for long. I was biting my nails in the days before the qualification meeting. We were fortunate, and the evaluation team agreed with that analysis based on his testing and recommendations from his specialists. Matt was going to preschool. The one concern was that in the special needs preschool, they would be addressing his speech and physical issues, but not helping to prepare him for kindergarten. We solved this problem by enrolling him in the same half day preschool his sister had been in for the morning, then he’d go to the special needs preschool in the afternoon. It took a bit of creative scheduling and entailed a lot of driving and long days for Matt, but it worked very well.
His preschool years went well and he made solid though slow progress. He enjoyed and learned a lot from both schools. He received a lot of occupational therapy and speech therapy in the special needs program. The "normal" preschool was a great social tool and helped prepare him for kindergarten. In kindergarten we started to see where the problems would be. Matt was much slower with his reading and writing skills. He still had a lot of trouble with his pronouns and grammar. His speech was still delayed. He got pull out services for reading once they saw that he couldn’t keep up with the pace in the classroom. This continued and expanded into first grade. Matt has difficulties with anything language based. He still uses “he” instead of “him” and vice versa. Reading is still slow going. In first grade he was embarrassed and teased, so this year I homeschooled him for his second grade year. We move along at his pace and that seems to make him much more comfortable. So for now at least, it seems to be working.
Matt’s brothers have been controls in many of the studies Matt has been enrolled in. It makes them proud to be able to help their brother. My daughter is sad that she hasn’t been able to participate in them. We also try to support The Focus Foundation as much as we can. Last year our family did their charity walk/run. The Focus Foundation is a program to identify and assist “The Forgotten Children”, children with X and Y chromosomal variations, Dyslexia and Developmental Dyspraxia. The foundation also works very hard to educate people. With disorders like 47 XXY, ignorance is incredibly damaging so education is key. They are still a fairly young agency, but they are growing and doing incredible work.