Lately I seem to come across a lot of blogs from special needs parents regarding what people should not say to them. Honestly, if I was not a special needs parent myself, I think I would be a little scared at this point to say anything, for fear I would get it wrong. While I do agree with many of the points made, here is one in particular that I don't agree with: apparently, upon sharing news that our kids have a certain diagnosis, it is considered uncool for the person to respond, "I am sorry." The reason for this, (according to several blogs I read), is that "I am sorry" implies that your child isn't a source of joy, but a sad case to feel bad about. But if you come to me, even though I am a special needs parent, or maybe BECAUSE I am one, and you share with me that your child has... autism, mitochondrial disease, cerebral palsy, or whatever, I am still very likely to reply, "I am sorry." And this has nothing to do with not understanding that your child is still an amazing light in the world. You will have more joy at times than you know what to do with.
But I am still sorry. I am sorry because I know this is going to be a harder parenting journey than you bargained for. I am sorry because you will spend countless hours at doctors' and therapists' appointments. I am sorry because you will be saddled with endless amounts of paperwork all the time. I am sorry because you will have to fight tooth and nail to get what your child needs in school. I am sorry because you will spend more days as a special needs parent than a typical parent wondering if you are doing all you can for your kid. I am sorry because there are milestones that will never be met. I am sorry because you will be faced with big, scary decisions regarding medications and surgeries. I am sorry because you will often be lonely, even in a crowded room, even with good friends who try to support you. I am sorry because that joy I mentioned earlier? It may end sooner than your parent heart can bear. I am sorry you even have to consider the sobering thought that you may outlive your child.
Now, I do believe an "I am sorry" comment should be followed by something hopeful and sincere. What do myself and other special needs parents want to hear, then? Probably a simple, "you're doing a great job" can go a long way. If all else fails, invite us out for margaritas and we'll likely forget any verbal blunders you may have made. :)