“But he looks so normal!”
I hear this frequently, and every time I do, it gets a little easier. I used to try and figure out if the well-intended speaker meant that my son looks too normal to have the kinds of trials he does, if they meant I was “lucky” that he looks like “all the other kids,” or if they were just in shock that his outward appearance doesn’t quite match up to what’s going on inside his mind and body. Over the past 2 years since The Older’s diagnoses, I’ve learned to just say “thank you,” because what else is there to say? I don’t expect anyone to know the appropriate things to say or what I ‘need’ to hear from them on any given day; honestly, things change so much in our lives, what was good yesterday may be something I don’t want to hear today. I would like to think that those who utter this phrase mean it in a kind way, and I take it as such even if the delivery and what follows sometimes makes me think otherwise. What comes to mind when I think of this is the time I met someone briefly, and when I explained why The Older was talking a blue streak about his doctors and how much he hated that another medication was added to his 7 daily medications, she said, “But, he looks so normal!” Not ten seconds after that, she whispered, “How do you stand it, all of his problems and doctors and such? Does that get in the way, or can you still work?” I don’t need to tell you that I could have taken that in the very worst way, but I didn’t. As a mother of a child with “Special Needs,” you have learn to let that stuff roll off your shoulders and box it up neatly somewhere deep inside yourself or you’ll go crazy.
As you can tell, within such comments about “normal’ lie the possibility of bringing a whole bunch of self-doubt to the forefront if you are feeling at all vulnerable. A statement like the above can illicit thoughts like, “Maybe they’re right. He does look normal; maybe we’re all overreacting,” or “It isn’t really that bad. Perhaps they’re right and we don’t need to do all this therapy and go to all these doctors and struggle so much.” Seriously. It sounds crazy, but I do have these thoughts and wonder if what we’re doing is the right thing. For instance, as a family we decided that I couldn’t work outside of the home because of the amount of doctors and therapy appointments The Older needs to go to, but the self-doubt about that decision is very real. On the rare occasion there is a 2-day stretch where there are no specialists and no therapy to attend, by that second day I sometimes find myself feeling guilty that I don’t work and bring in a paycheck. That feeling is a horrible one, and when I think that there are others out there who are very likely thinking the same thing about my life and judging it, it can be painful.
Why did I bring this up? Quite simply, because sometimes being the mom of a child with ‘special needs’ is very isolating, and I think it’s important to point that out. Our “normal” means constant change, and it isn’t easy. People stop inviting you places because a lot of times you can’t go, and they get tired of hearing “sorry, I can’t today.” They sometimes choose to ‘overlook’ you because they either don’t know what to say or because they don’t know how to act around you or your child. People can also be unintentionally cruel in their remarks, and they can be hurtful without ever uttering a word (do they think I can’t see them roll their eyes or hear them sigh in annoyance when my child is having a rough time?). It’s sometimes scary being out in that big bad world with an unpredictable child, where judgment stands on every corner and people are quick to question your parenting and aren’t shy about sharing their thoughts; there are days it’s just easier to stay home and avoid it all together, so we do. We don’t do this because we don’t value our friendships, we do this to save them and to keep ourselves and our child from being hurt emotionally. It’s a means of survival, and it’s a measure of control in a situation were we have very little of it.
While I can’t speak for all the moms of children with special needs, I’m pretty confident that we have all felt this way at one time or another. Be patient with us. Don’t be afraid to ask questions. Please don’t stop offering to listen to us, even if we repeat the same story over and over because you may be the only person we’ve spoken to other than a doctor in the past 3 days. Don’t stop inviting us along and try to be flexible; understand that when we say, “I’m sorry, today isn’t a good day,” we may be screaming “Oh God, I want to see you so badly! I want to do something other than talk to another therapist,” on the inside. Most importantly, don’t stop being a friend to us. Even if you think you’re doing a horrible job and are failing at it, I guarantee you aren’t. You’re important to us, and even if we forget to say it, inside we’re thanking our lucky stars that you’re in our lives.