Tuesday, March 6, 2012

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.

1 comment:

  1. Good for you for being proactive and basically ignoring that doctor's comments -even though they were very hurtful. When Maya was a baby, my older daughter (Carrie) and I both noticed things that just didn't sit right with either of us in Maya's actions/reactions. Initially, I don't know if Mandy didn't see them the same as we did or if perhaps, she was so enthralled with this beautiful baby that she didn't want to see anything then either. Truthfully, the very first time I held Maya in the hospital when she was a day old, there seemed to be something different about her that spoke to me. I'm not normally superstitious or stuff like that, but it was just a feeling that came over me, saying that this baby needed something more. What that more was, I sure didn't know, but we're learning 8 years later still learning more and more!
    After Kurtis came along and Mandy and I both were seeing a lot of the same indicators as had been present with Maya, we were able to get Cen-Clear in about 2 months earlier than we had with Maya -both kids though began getting services between 18 and 20 months though. The first months/year seemed for so long to not yield any -or not very much -results but then gradually, we began to see changes, progress and now, both kids are doing very well. Maya is considered Aspbergers whereas Kurt -they say -is "Classic" Autism, whatever the heck that means, I'm not sure.
    In the beginning days with Kurt though, many people would tell me how sorry they were to learn that both children have autism and oh, my -how sad, how difficult that must be, etc., etc. Frankly, yes occasionally there are problems we deal with there with these two that never came up with my own kids and at times, it's more a pain in the rear but basically, just different. But, also, we are very fortunate in that therapy was started with them early-on, as that really is vital, and also, that they have been able to learn as well as they have! (Kurt did have more physical issues than Maya did to overcome.)
    There is a group Mandy found, online -CafeMoms -which has a special group set up for parents with special needs children that you might be interested in looking in to for support as well as information that could be helpful for you in working with Lu. As you've already learned, Doctors' don't always know it all and sometimes, people -particularly parents -who deal with the issues of special needs kids day in and day out, sometimes find things that are helpful to them that they pass on and might be useful for you at times too. Just a thought. (A good place to unload the stress at times too because they've all been there at one time or another and are, as a result, very non-judgmental, which does help!
    Anyway, just keep doing what YOU feel in your heart is best for Lu. Peace.