Learning How to be "the Mom"

One of the scariest things about receiving our prenatal diagnosis was the thought of how to interact with others, "outsiders" specifically. I was anxious about how to talk to people about my son and I still don't have all the answers figured out. Do I blurt it out, "This is Johnny and he has Down syndrome."? Do I wait for them to ask? Do I try to find a clever way to integrate it into our conversation?

I've tested it all out, except for the blurt it out way. It can be pretty awkward sometimes. There are times that strangers mention things that are Ds related and I feel that angry mama bear rile up inside me, defiant and protective, ready to rip their heads off until the (very small) calm part of me comes out and brushes off their comments that so far come from the form of ignorance that is truly not knowing what he has or what that means. There are times that people say or ask something specific about Ds and I have to trace in my head if I have told them or if it is obvious in the way he "looks" that day or if they know someone that may have informed them ahead of time.

It's challenging and I don't know the answers yet.

Sometimes you can tell that Johnny has Ds and other times you can't. Even our OT mentioned that sometimes his features aren't very prominent. Sometimes I am thankful for the "stereotypical" look because it automatically gives people a framework to set expectations in. Other times, I am grateful for his unique take on "Ds features" because it may mean that more people give him chances that they may not have otherwise. More often than not, strangers comment on how cute Johnny is or how amazing his eyes are or how neat his hair is which makes this mama very happy.

I find it harder too, to talk to outsiders that don't know us personally. I can talk to strangers who are raising a child with special needs and feel connected. I can talk to people that know and love us personally and feel connected. But it is becoming increasingly difficult to talk to people who don't know us and aren't a member of "the community" about Johnny and Down syndrome in general. It is making me increasingly frustrated to hear stereotypes come out of people's mouths about Down syndrome because I am working so very hard to learn about my son and what his needs are and what he may need from me. And I know it is well meaning and comes from a sincere place, but sometimes it doesn't hit happy parts of my heart. To some degree, it hurts, to hear people reducing my son to an anecdote. And regardless of how they mean it, that is how it feels. Especially when they don't know us or they don't have first hand experience in day to day life with a kid with special needs. I find myself getting impatient with "God gave you a special gift", "They are such happy people", "They will teach you something great", and other comments that I have probably said myself in the past. The truth is, we try to view each of our children this way, so it feels like people are just compensating. So I nod and smile and try to be gracious, all the while looking for ways out of the conversation.

I don't know what to "tell" people to say though. I think it helps when people make more specific comments about Johnny because it helps emphasize that, although his diagnosis is the same as 400,000 other Americans, he is still unique and how that extra chromosome will manifest itself has yet to be determined. I like when people comment about him making a connection with people around him ("Look at him looking up at you!" or "Oh, he is giving me such a great smile.") because those personal connections are and will be so valuable to us along the way. Even asking specific questions about his diagnosis or his progress is helpful because it helps us stretch our brains and share some of the vast multitudes of knowledge that we have gained over the past year. I don't think I would mind if a stranger came up to me and asked if he has Down syndrome, but I can see how hard that would be in case you were wrong. But if someone felt fairly certain or overheard me talking about it, I wouldn't mind the segue into asking questions.

I've been thinking a lot about what happens when the comments turn from sheer not knowing ignorance into discriminatory and hurtful ignorance. I've been thinking about what stance to take and how to handle the type of situation that, more likely than not, will happen at some point. I've been thinking about how to manage my pain and hurt while protecting my children and formulating some sort of educated retort to put someone in their place. I definitely don't have the answers to that. For now, I just implore our community of those that love us and care about us to not allow that to happen to others around them. I charge our friends and family with standing up with the families of kids with special needs so that their parents can protect their pride and their children's feelings without worrying about the jerks out there. I know that we have a strong community to fall back on and rely on for strength and comfort in those times. But others may not have that, and it is important.

I am still learning a lot about what it means to be Johnny's mom, but I am pretty sure I will never have it all figured out. Instead, I am hoping to become more comfortable with not knowing and becoming secure in the learner that I am.

 Very proud of himself, he is consistently going from laying down to sitting up