It is always difficult to come to terms with something like this; your child being diagnosed with Sotos Syndrome.
I have to be honest when it was first mentioned; at the age of 4 months that her development is delayed; we thought "Ag really, how are you able to tell...". At the first mention of Sotos; our reaction was even worse; question arose like:
1. She does not have all the signs
2. Some aspects of her development is on track
3. There is no history in our families
4. Etc.
It was really difficult to accept. When the big milestones like crawling, talking and walking came (she is still not able to do any of them); it was even more difficult to spend time with our friends whose children are around her age.
I found however that it is extremely important to talk about it, to share it with those close to you and to find people who are experiencing the same as you. I have found numerous organizations in both the US and Canada but nothing in South Africa.
This is my attempt to start discussions and learn from each other, to support others and also get support back, to share the difficult and celebrate each milestone reached - no matter how big or small.
sotossyndrome.blogspot.ca
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