Wednesday, October 3, 2007

The Latest News...

Charlotte had her 1 year exam at the pediatrician's office yesterday. Chris and I knew we had many questions to ask, and thankfully, the Dr. sat down to talk with us when she came in. Charlotte weighed 14# 3oz and was 27 3/4" long. She is now in the 10% for height, but still way below the chart for weight. She was in the 5% for height, so there is some improvement there. I will try to address our questions on here so you can all keep up with what has been going through our minds lately.

Recently, we have had some questions about some of Charlotte's "behaviors"/actions. She does what we call "Happy Hands" where she throws her arms up above her head and repeatedly turns her wrists with excitement. She is reluctant to grasp objects, wants held but doesn't always want held too close, is having trouble progressing to textured foods (stage 3), does not use a pincer grasp, has trouble processing how to do things, locks her legs out and has stiffness in her lower extremities (although it has improved), has difficulty concentrating and is easily distracted when others are around, gets overwhelmed easily in a group of people or loud place, cannot sit independently without falling within the first couple of minutes, falls frequently while crawling, is infatuated with shiny objects (especially jewelry)... These things may seem like problems all children have but we feel that Charlotte is exhibiting signs that she is not like most children.
Our first thoughts have been, does she have Cerebral Palsy or Autism? Our pediatrician was honest with us, saying that at 9 months of age, she was concerned Charlotte had CP because of the stiffness in her legs. But, as she has begun crawling, some of the stiffness is improving, and she said if Charlotte had CP, that would not likely improve. So, she does NOT think Charlotte has CP. As far as Autism goes, the "Happy Hands" and her problems with being overstimulated are signs of Autism, however, Charlotte does not display the introvertedness of most Autistic children. She is very social, smiles, interacts, etc. She told us that we won't get concerned about what Charlotte does with her hands until she is 2 and if she is still doing it then.
Our next question was about her next surgery, and when to do it? She wants us to go ahead and get the MRI done soon, and then based on the results, schedule the surgery. So, the surgery may be soon, or put off until next spring.
We were concerned yesterday when talking to the pediatrician about Charlotte's balance problems, how to help her and protect her, but still let her be a normal kid. It is really hard seeing her fall time and time again. Then cry, and cry some more. Then get back up, only to fall again. It breaks my heart when she falls because I don't know how to help her. I keep thinking it is going to get better, and we do some special therapies to help improve her balance. But honestly, I am not sure when it will get better, but it sounds like we are doing everything we can. I just don't like seeing her get hurt so much. Everytime she starts to lose her balance, I take a quick scan around of all that she could smack her head on. All of the baby-proofing can't save her from her toys, which is what she seems to injure herself on the most.
Finally, the major topic of the visit was about something Charlotte does have. She has a disorder called Sensory Integration Dysfunction, or Dysfunctional Sensory Integration...same thing. Here is a link to an article that I found helpful in explaining it, and therefore am going to spare you all my long version of explaining it. Simply put, this is a problem she will likely deal with for the rest of her life. We are doing therapy to "desensitize" her brain from some of her senses that she is particularly sensitive to, and the therapy is really our only way to help her. It is very important that we recognize that Charlotte may need different things than most kids, and that we are going to have to learn how to care for her best. Of equal importance is our family and friends understanding her as well, that way when we say or do something that may seem a little different to you, you understand that it is only with her best interest in mind. This may include not letting her do certain things as well, not to keep her from experiencing things, but to keep her from becoming overwhelmed and uncontrollable. We have learned since she was a baby that she is sensitive to loud noises and loud rooms of people, texture, the thickness of her bottle, the temperature of her food, and this disorder explains a lot of other things that we are just now questioning as well. Why she rakes and flicks her toys instead of grabbing them, she seeks out "rough" play, she didn't like crawling on the carpet at is strange, but there are many things that she does related to this disorder.
The good thing is that just because she has these sensory issues, doesn't mean that she will not be normal cognitively, (she should still be able to learn). But the part of the brain that organizes these senses and can pick out information that is important and information that is not, is the cerebellum. And, with her missing 95% of hers, it is no wonder she is having difficulty. So, we are having to help teach her how to organize the information but in a controlled way so that she has positive experiences with learning instead of feeling overwhelmed all of the time.
Even though Charlotte is the one having to overcome these things, sometimes I feel the most difficult task is the one Chris and I to teach her and how to recognize what is best for her. We don't always know everything, we learn from her. And then, taking the knowledge we know, and trying to explain it to other people can be grueling...and emotionally overwhelming. When I see her become overstimulatied, it makes my heart break just as much as when she falls because I can only imagine how it must feel to not understand the things around you and to become scared or frustrated by them. I sometimes go into "protector mode" just because I hate to see that happen to her. I know it is going to happen sometimes, but what would help us out so much is if those that care for her read this article so they understand where we are coming from, and when we/I (most of the time me) swoop in to "save" her, it isn't because we want to take her away from you...we just recognize what is too much for her, sooner than others do. Which is ok, no one knows her like we do, but as long as we know that you understand why we do what we do, I think Chris and I will feel better about all of us learning how to care for Charlotte.
The point of this entry isn't to dwell on the fact that Charlotte is different, because different is ok. It is just to recognize it because we must. Recognizing it, and then altering the way we care for her because of it is what is best for her. But you cannot change what you do adequately unless you recognize why. And don't think that Charlotte is perfect for us, and that we are star parents. I sometimes feel as though I don't know how to do this...I am so overwhelmed by the task ahead of me. Parenting children is hard enough, but then to have more on top of do I do it? I broke down and wept just today because sometimes I just don't know what she wants, how to make it easier, better, what is too much, what isn't enough? Am I strong enough? I feel guilty for wanting a break from this stress, only to find myself stressed that I am not here. Where is the balance? I guess someday we may find it, but right now I feel as though we are just toppling frequently, kind-of like Charlotte does. One minute we are up, then next we are down, not knowing how we got down there.
Daily, it seems our lives are not predictable. I long for predictable... I feel I am constantly searching for answers, but then some answers we get only produce more questions. I am so proud of all that she has accomplished, but just hope I am strong enough to continue helping her achieve our goals, and ultimately her own. I know all parents have this fear... is it okay that I don't feel like I am "all parents"? I feel different, I want others to recognize that we are different. Why I want that sense of understanding, I don't know. It is just so much easier to hear people say they know it has been difficult, instead of hearing them say "all parents worry about those things". The same goes for recognizing Charlotte's differences. I don't want people to label her, nor do I want them to say she is like every other kid. I just want them to recognize that she is different, but that is ok.
So as you can see, I have major inner struggles with this. Mostly, I just wish someone could tell me how. (Although no one can) Tell me when it will get better, not that it is bad, it is just hard, and has been for a while. But, just when I have a hard day, such as today, I know that when she gets up from her nap, that her smile alone will bring me peace. And we will keep going, trying, pushing, teaching, encouraging, exploring and loving with her.

The Hawn Family

1 comment:

Anonymous said...

Jenn, I just want you to know that I am so proud of you and Chris. Just hang in there, know that you have a great support system and please keep your head up. You WILL find the balance. It'll take time. I love you and hang in there.