To Tell or Not To Tell? That is the Question.

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.

How do you cope?

I had a pregnant woman ask me: I am expecting a similar situation with my son who's due at the end of the year, so I just want to ask: did you know about this while you were pregnant? How did you cope?

The quick answer: After I had the diagnosis and started looking it up, I'll admit I panicked a little. It's scary to think of the things our kids will go through. But I coped with it by looking at my daughter. Really looking at her and realizing I was blessed. She's alive and happy and she relies on me. Who's going to teach her to be strong? Who's going to teach her to shatter stereotypes? Build up her self-esteem? encourage her to stretch the limits of her diagnosis? Who's going to teach her to take life for what it is and LIVE it? If not me, who? The world is a cruel place for people who are different. I wasn't going to make it crueler by not accepting my daughter for who she is... She taught me that we may not have a choice in what happens to us in regards to our genetic make up but we have a choice in how we respond to it. Choose Happiness. That's how I coped.

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Choosing happiness, that's what it's really all about. At least it is for me. We can only really control one thing in our lives and that is how we react to situations. In that regards, it's all on us and we rise above or fall on our own merits. Choosing happiness isn't easy and I'll admit there are times when I find it really really really hard to do. But the alternative isn't worth the cost. What is the point in being jaded? Who does it help? Not us and certainly not our children.

Being a good parent requires you to be self-less. Not in the sense where you never go out and do things for yourself. I'm not talking about that kind of thing, I believe that moms and dads need time to relax and take a break. What I'm talking about is being self-less in how you feel about your children. I think a lot of parents get into the trap of saying "How does my child reflect on me?". If my child is different, are they going to think less of me? To that I say: STOP IT!

First rule of being a mom of a kiddo with special needs: Stop caring about how other people think of you. We've got too much on our plates already to waste time on petty stuff like that. If someone thinks less of you due to your circumstances, if someone doesn't want to be around your family or isn't accepting of people with special needs... trust me you are better off without those people in your lives. Don't pity yourself or your child, pity the poor ignorant fools who will never know the power and peace in accepting people for who they are.

But at the end  of the day, coping really isn't an issue. There's nothing to cope with when your greatest blessing is holding her arms out and calling your name.

God Bless and Take Care Guys!