What NOT to say to a parent of a child with special needs

I generally try to stay clear of websites like parents.com or similar websites that talk about kid’s growth and development. It used to feel like a slap in the face every time I got on there when it was obvious that Liam would never fit into most of these articles. I've pretty much gotten over that, so I do get on there every once in a while. The other day there was an article about things not to say to an expectant mother and I clicked it. On that page there were links to other websites with articles like “what to say when a friend is sick” or “What not to say in awkward situations.” I was curious so I googled “what not to say to a parent of a child with special needs” just to see what would come up. There wasn't really anything at all, so I thought I’d give my opinion on what an article like that should say. If you are offended by anything written, assume I meant it with a smile :). 

1.      “I’m sorry”

Usually this just leaves me reassuring you. “Oh, it’s okay.”

2.      “It could always be worse”

           

Thank you, Dr. Phil. You are right, it could be a lot worse but on days I’m completely stressed out, this doesn’t make me any less frazzled. Plus, while I’m usually a very optimistic and cheerful person, if I want to spend a few hours feeling sorry once in a while, I’d like to do it without feeling guilty.

3.      “I know just how you feel”

Usually this is followed by a story about how “Little Joey” had a cough that took an entire 2 weeks and 4 doctor visits until it went away. Really?

4.      “I saw on TV…” OR “My friend’s brother’s wife’s uncle’s mom said”

 I feel (a little) guilty admitting I hate this one. I SHOULD be grateful. The intentions are good, but........Usually this involves someone who knew someone who went to a doctor I should check out, or a 5 minute segment on a condition that has a few symptoms in common with Liam.

The exceptions?

ü  I ask.

ü  You have medical experience. (An introductory A&P class does not count, sorry.)

ü  You are willing to bet your right arm that whatever you saw is the answer.

 The problems with these statements are that there are thousands of conditions that share many of Liam’s symptoms, and literally everyone knows someone who went to a doctor they really liked. Aside from our regular pediatrician, we have NINE specialists we see on a fairly regular basis. I like all of them so much that I travel 4-5 hours to see many of them. Considering the gas mileage my jeep gets,     this is a big deal! I spent hours researching many of them, and then I even spent time researching the school they went to. Yes, I am anal. Yes, it’s probably creepy that I spent so much time looking them up, so please don’t tell them I’ve done that. I’ve “fired” many doctors before; 6 I can think of off the top of my head. I’m sure your doctor is great, but I am sticking with mine. The last thing Liam needs is one   more doctor, but I am sure that he also appreciates the sentiment behind your advice.

 Also, because I’ve already admitted how anal I am, I can assure you that whatever article or tv show you saw, I saw as well. Then I probably used my school account to find the actual medical journal article that prompted the media to talk about it. I’ve paid $40.00 to read the really interesting ones that I couldn’t get for free. It’s not that I don’t think you know what you’re talking about or that you don’t have valuable information to offer, but…

5.      “Everything happens for a reason.” “God doesn’t give us more than we can handle.”

I don’t know why, it’s just annoying. It just seems like something to say when you can’t think of anything else to say.

6.      “What did the Dr. say this time” followed by “what does that mean?”

   This one by itself isn’t really all that irritating, but usually this question is asked by 45 different people. I then tell the same story 45 different times, then have to explain it a million different times. This alone is the entire reason I started this blog. I have spoken to others in similar situations about this, and it’s unanimous. We appreciate it, but it’s exhausting.

7.      “He’ll be okay, just give him time”

Another one that I’m not sure WHY it’ so annoying, but it just is.

8.      “What can I do to help?”

Most people would completely disagree with me, but then I’d just have to spend even more time coming up with a list of things I can let you do. I already said I’m anal. I’d much rather everything is in a messy pile on the floor than put away wrong. I won’t lose sleep over a few dishes needing to be put away, but for some reason I WILL lose sleep if I am worried that the mixing bowl is on the second shelf instead of the third. I acknowledge this is my problem, but I’m probably not going to change anytime soon. Wash my jeans in the same load as a towel? Eww. Wash a load of my clothes and then put them all into the dryer without separating my tank tops to air dry? Weird, I know…but I will be “forced” to redo it. I fold my tank tops one way, my tee-shirts another…if it is not done this way, it is wrong.

I am going to assume that you asked me what you can do because we like each other. I want you to keep liking me, so I will insist that you do nothing.