We found out our oldest child Jacob had Fragile X syndrome 3 days after his 3rd birthday in October of 2003. Shortly afterward we discovered his little sister Samantha had the full mutation too… she presents as “typical” so we would never had known if it weren’t for her big brother Jake.

We are so lucky to have these two beautiful kids… amidst the struggles and challenges that we encounter with Jacob, we see how pure and uninhibited his outlook is on the world. He has a great sense of humor, and he and his sister get along better than some siblings I see. His sister Samantha likes to take control, or be “the boss” of him (sometimes too much) but she also allows him to be himself from time to time… loud and goofy!

Jacob is now 10 years old. He can write his name, read, add, count, and is getting better every day at interacting with his peers with many thanks to his LINKS
He can write his name, read,
add, count, and is getting
better every day…
at school. He also learned how to ride a 2-wheeled bicycle WITHOUT training wheels at the age of 7, and can navigate the internet and an iPad like no one else.

We, as parents, have always treated him like a “typical” kid. We expect him to behave appropriately at home and in public, and to treat others as he would like to be treated. He gets punished just like any other kid – after all, the phrase “NO iPad for 2 days” resonates with him just as much as anyone else. We are focused on his future… to ensure that he will be a contributing member of society. That is our frame of mind, especially when we enter the dreaded Annual IEP meeting. There are no contained classrooms or special circumstances once you become an adult. He is learning how to navigate the REAL world, not just HIS world.

As we continue on this journey, many thanks to NFXF for everything you do… for new families, existing families, and everyone in-between.