Okay, I have to rant just a tiny bit because that's the mood I'm in.
Dear friends and family, sometimes when you ask how Miles is doing, I say he's great. Because he is doing great! He's finger feeding and finally learning to use his bottle and he's getting into the kitchen cabinets like most kids his age. But just because he's doing great, it doesn't mean I'm doing great. It also doesn't mean that he's doing perfect or that he's reached all the goals the PT and OT have set out for him. It doesn't mean he's all caught up with kids his age. It means that he is reaching a lot of milestones and he's happy and healthy and making progress. So if I say he's doing great but then I complain about something he's not doing, don't tell me "he's going to be fine". I know that!! Of course I know he's going to be fine. I'm his mom and I can see that he is going to be fine, I know it in my bones, that doesn't mean I need reassurance from someone who doesn't know what I'm going through.
I know it all comes from a well meaning place and that's why I just nod and smile and say "I know, I know". But that might not be how I'm feeling and I actually just want someone to hear me out and say, "oh wow", "interesting", "I didn't know" or something like that.
Sometimes I just want to be listened to, I don't want to get feedback or opinions. I don't want to see him compared to other "typical" kids and I don't want to hear that all kids have their own problems and every parent worries. I know that. I completely understand that and I care about your children and your worries, but I don't know what you're going through and you don't know what I'm going through. That's all I'm saying.
I don't want pity or soft voices of sadness when referring to Miles or his "condition" as some people call it. It's an extra chromosome, it's a syndrome: Down syndrome, not a condition. And it is quite all right to talk about it. Ask me questions, tell me what you know or don't know or what you've heard or are wondering about it. I want to discuss it all because it's not taboo. It's life, it's very common in fact, and it's important for other people to understand DS better. And I like to talk!
Oh man, this all sounds so mean and rude, and I do not want to hurt well meaning people's feelings, but I just had to put it out there.
I'm not looking for pity, but a certain amount of empathy and understanding.