What would you tell someone about your child with Sotos?

[HikingStick]

My wife and I recently joined the Sotos Syndrome Support Association
(SSSA - you will find them at http://www.sotossyndrome.org). I was
hoping that they would have a simple tri-fold brochure we could pass
out to family members, friends, church members, or even strangers who
are either staring or wondering why we won't "deal with" our fit-
throwing child. Unfortunately, most of what they offer is very
technical--it deals with a lot of the medical terminology and the
clinical symptoms, but it doesn't do much to help the average Joe
understand what we'd like them to know. So, having a background that
includes some desktop publishing experience, I'm planning to put
together our own brochure. I'd love to include some quotes from other
families of chilren with Sotos Syndrome, or even from some older
children or adults who have lived with Sotos Syndrome, to help readers
better understand what it is we're dealing with.

What have you said (or what have you wanted to say) to that stranger
who stares, or that grandmotherly type who tells you, "oh, kids
develop at their own pace and they usally catch up once they're two"?

Here's something I've wanted to say:

"No, it's not as simple as that. He was born with a rare genetic
condition. While we hope that he will "catch up" and have a
meaningful life as an adult, we know that it will be years before he
gets there--if he gets there at all. He might not be able to speak
until well after he goes to school. He might still be wearing diapers
then, too."

Or...

"Sorry, he's not five--he's only two. No, he's not just tall for
his age."

Overall, I guess I'd like to say this:

"Before Gideon was born, I was always afraid of having a special
needs child. After he arrived, I began to realize that Gideon was
just what I needed in my life. I don't know what he'll be like as an
adult, but I know what I have before me: a kind, loving child who
can't communicate as much as he understands, a child who throws fits
because he can't tell us what's wrong, a child who didn't ask to be
born this way, a child who is loved by his mother, his brothers, his
sisters, and me. He's my son, and I love him. Period."

[Jenny Moretter]

You are absolutely right!!

I very much love my daughter and would do what ever necessary to help her develop to her fullest potential. But, also as parents they are times dealing with a child like this that is becomes so frustrating and emotionally draining because you can not communicate as well with your child as you possibly can with the others. I have tried to look at this as an opportunity to try to help others and hopefully meet others who have a similar story.

I think you said it perfectly, I am not sure what I would say to a stranger other than, "She is my daughter and although she has Sotos Syndrome that limits her ability to learn or communicate well, I know someday she will become the best she can be. Until then all I ask from others is to accept her for who she is and love her unconditionally."

Thank you so very much for your reply@