Trying to be heard

At Lucy's 9 month appointment last year with Dr. Kilian Brech I first shared my concerns regarding Lucy's motor development. He said sometimes kids just take longer,which I know is true. But then he said, "Yeah she definitely isn't winning any speed contests there. But I wouldn't run out and get her evaluated by Cen-Clear just yet." After a few weeks of thinking that I did think she needed evaluated and I didn't have to take his stupid, condescending advice, I did call early intervention, and even though she didn't qualify at the time, it helped to move things along three three months later when she did qualify. So that was my first experience with someone being dismissive of my concerns and reacting in a way that made me want to scream in their face. And quite honestly, many people I love and who have meant well, in addition to people I don't love and barely know, have all said things of this nature and made me feel like they were trying to help me understand that I was being ridiculous and over-reacting. But as it turns out, I wasn't and I knew I wasn't then! And I will never, ever, ever, for as long as I live, forget what Dr. Brech said and the attitude that he had.

I think people tend to react in a dismissive, maybe patronizing way when someone has a concern about their child for several reasons. Maybe they do see the same things and have the same concerns, but don't want to be alarmists, like they feel you are being. Also, seasoned parents, I have noticed, tend to like to brag about being slightly less observant, overprotective, etc. as they have each child and seem to want everyone to behave the same way, thus acting like you are a paranoid, coddling, freak for paying so much attention to your child. People probably act dismissive because what you are saying scares them, makes them sad, whatever, and they just want to ignore it. My goal here is not to launch an attack on people who tried to deter me from seeing Lu's troubles, but maybe just to deliver a big fat "I TOLD YOU SO." and to encourage people to think carefully before insinuating that a parent who has concerns, any type of concerns, regarding their child, is being unreasonable. I obviously take absolutely no joy in the "I told you so" as is usually the case when people get to say that, because I wish more than anything that everyone else was right and I was wrong.

But I'm going to tell you what, and I told Chad this the night we came home from the doctor's appointment; I think I have always known, in my gut, and in my heart that there was something more going on than "just" hypotonia and that whatever it was, was likely not something that was going to just go away. And because I had that strong feeling, it made people's dismissiveness that much more difficult to handle. And there are things people have said, just like Dr. Brech's comments, that will stay with me forever. Because I sat day in and day out trying to "fix" things and saw over and over again things that seemed to say, "Nope, you can't fix this." So I guess my point is just that it hurt when people didn't believe me and listen to me, because I was right. We have experts now to help us, but I am the expert on Lucille May Shaffer;I always have been and I always will be. I am the leading expert anyway, and Chad comes in a very close second due only to the fact that I spend more time with her while he's at work. So now we will have a "team" of people to help us decide how best to care for Lucy for probably the rest of her life, but Chad and I will always be the team leaders and we will always make the final decisions, and we always make sure that we are being heard, loud and clear.