My DS is 2 and has significant developmental delay. At his last appointment his pediatrician felt it was unlikely that we would ever get to the bottom of it after a year of tests however we seen a clinical geneticist recently who believes that he will be able to diagnose a genetic condition within the next 12 months. We've been on a rollercoaster of emotions - wanting to know the cause, coming to terms with not knowing and now waiting to find out. While also asking ourselves does it really matter?? - he'll continue with his therapy and bring us love laughter and smiles every day. What I find most difficult is my parents and in-laws inability to acknowledge anything is wrong and the fact that they refuse to tell their friends and the extended family of the situation which means I get asked the constant usual questions like - is he still not walking, is still not crawling etc etc. When I ask them why they haven't told these friends and family - I am told 'he hasn't been diagnosed with anything and until he is there's no need for anyone to know' but I would find it much easier if these people did know and I wouldn't have to smile and say 'well you know, he'll get there blah blah'
Sorry to ramble on but has anyone else faced this and how did they deal with it - we're not very good communicators in my family!!