I dreaded writing this post because it probably is one of the most controversial part of being a parent of a child with Sotos Syndrome. There are some people who are very adamant about not telling their children and on the flip side there are those who very much think it's a good idea to tell them. And there are good and bad to either choice. And it's just that: a choice. As a general rule, Parents typically do what they think is best for their children. Everyone has different challenges and experiences and those shape the choices they make. I respect people who choose not to tell. Every child and family are different and we each must make the INDIVIDUAL choice on what will be best for our families. Like most things in life, it's not black and white. What may be the right decision for one family might not even be feasible for the other (this is especially true for Sotos Syndrome because it affects every child differently).
So what choice are we making?
We are choosing to tell Natalie of her diagnosis.
Why?
We want to be open about her health issues mainly for two reasons.
1. Kids know when they're different and there is power in knowledge. Natalie will always be taller than most of her peers and some things will be harder for her to get as quickly as others and I know that these things will become glaringly obvious to her when she starts school. I feel like if we start out acknowledging what her diagnosis is from an early age, making it just an ordinary, everyday part of our lives and making sure she knows that her family accepts her for who she is but EXPECTS her to tackle chalenges and succeed (even if it takes her a little longer) then she'll grow up being accepting of herself but expecting herself to perservere in whatever she chooses.
Part of the reason I am so adamant to tell her is because I've seen the effects. Before my sister was diagnosed with dyslexia the elementary school psychologist told my mom "She's just lazy." Now my mother knew that was not the case. We're talking about a kid who would stare at a page for hours trying to understand. But when people were telling her there was nothing wrong with her and she should just "get it" it took a toll on her self esteem. She started to believe she was stupid. That just wouldn't do for our parents so they scrimped and saved and got her to one of the top testing sites for Dyslexia. They found out that she had a very severe form of it. After that it was a relief. She knew she was smart she just had to learn a different way. And I am happy to say she is a straight A student in College for Nursing. Now I know Sotos Syndrome is a far cry from dyslexia but for me the concept is the same. If you know there's a chance you'll have to learn a different way then there are more opportunities to succeed if you know what you're up against, accept it and persevere.
2. I'm afraid that if we keep it a secret, that one day she'll find out and feel as if she should be ashamed or resent us for not telling her. Now I don't know of any parents who have EVER kept Sotos a secret because they were ashamed of their child. All the people I know who made that choice did so out of love for their child. They wanted to keep their children safe. They wanted to make sure that they weren't limited. I totally get that and fully support not limiting our children. But eventually our children find out and you have to prepare yourself for that day when it comes. Kids tend to internalize things and if they find out that they had something and it was hidden from them they tend to ask: What's wrong with me? It must be pretty bad if they kept it a secret for so long? They begin to question so many things. Remember how it felt when you first heard the diagnosis? Now consider how your child will feel when they realize all these years this was what they had and that other people knew all along. I don't want her to ever ask herself those questions or feel like there are parts of her she should hide or are better off hidden. I want her to love herself like we all love our children, unconditionally.
What are some drawbacks to telling her?
She might try to use her diagnosis as a crutch and fake not being able to do things in order to get out of it. Unfortunately for her, I married her father and have had lots of experience calling people out for "milking it." AND it'll be hard for her to say she can't do things because she has a wonderful father with Sotos who finished school, went on to get a college degree and works very very hard in his career to provide for his family.
But once again this is an individual choice that is made on many personal factors. It's the right choice for us but that does not necessarily mean it's the right choice for everyone, nor should it be. That being said, if I didn't have my husband to be such a positive role model for our daughter and such a supportive family I don't know what choice I would have made.
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