A Dose of Reality
I want to preface this post with a disclaimer of sorts: If you are considering adopting a child and/or are waiting to bring home a child with cleft lip and palate, I hope and pray this post is not DISCOURAGING. I really, really hesitated for so long to write it for that very reason. I hope it all comes across the right way. I also hope to convey to those who might consider CL/CP an easy need that it is not. It requires many surgeries over the years and much patience. Or at least that has been our experience. Would I do it all over again for our Li’l Miss? YES! Do I regret it? NOT ONE SECOND!
I have been asked lately if Li’l Miss understands English … and if she is talking yet. Well first, she understands everything we say from all I can gather. She really does. In fact, she can be quite perceptive, much like Mo, her older brother who is 6. They have a lot of similar personality traits and can be quite mischievous together. They also have a lot of fun and can be the worst of enemies and the best of friends. We still have people quiz Li’l Miss sometimes just to see if “she really does understand.” That gets annoying to us, so I would assume it can frustrate her at times too. I think people are either nosy or just curious. Either way, we try to just avoid that as much as possible. Oh and she can HEAR very well. I think a lot of people assume when a child does not talk (or in her case it comes out as babble) that they cannot hear either. It shocks me at times what people will say in front of her. Lately it has been comments like “how good she looks NOOOOWWWW.” I saw someone on an adoption board talking about people taking a ride on “stupid lane” and though we don’t prefer to use that word around here … sometimes it just fits. I wish people were more sensitive, but the more I think about it the more I realize adults so often talk about children who are standing there as if they are not standing there. I am guilty of it myself.
As for her speech, I wish I had more good news. I hesitate to write this next part … but here goes. The Prez and I both feel at this point in time we would not sign up for the special need of cleft lip and palate again. There. Well at least I feel better. Man, I really don’t like putting down that cold hard truth but it is what it is. Why do we feel that way? Her inability to talk and her ability to whine and scream and verbalize in every way other than with words is really starting to wear on everyone’s nerves. Now, she does beautifully with her sign language and shame on us for not teaching her more and learning more ourselves. Had I known that she would still not be using words at 6 months home, I would have been better prepared. If you are waiting to adopt a child with CL/CP, please learn as much sign language as possible. I think Li’l Miss picks up signs after seeing them one time. Seriously. She really soaks them up.
Now she verbalizes all the time, but mostly it is either babble or one of about 5 words she says. That list I had written down several months ago has dwindled. The thing is: she can drink from a straw, she can blow bubbles, she has no oral aversions as far as we or any medical professionals can tell. So why is she not speaking more clearly? We just don’t know. She will begin speech therapy after her palate repair. Why have we waited? After weighing many professional opinions and doing our own research, we feel given her age and her present state this is best. Many of the things a therapist would work with her on at this point involve areas where she does not struggle. Also, if she learned to speak with an open palate (and hers is 3rd degree), she would have to relearn it all once her palate is closed. That is the plain and simple skinny on that.
I always do this. I am adding this next part. I wish I would have put it in here in the first place. The BIGGEST reason we are frustrated at times, more than usual lately, is that it is clear the inability to form words is frustrating Li’l Miss and it separates her from her same-age peers. That right there breaks this Mommy’s heart. I see children come up to her and then it is as if she is alien because she opens her mouth and babbles. We have yet to place her in a classroom at church mainly for my fears of how she will be treated, though we have had to wait after her heart surgery and to keep her well for her lip repair. Still now she could go but I just don’t know. I have finally accepted that perhaps Li’l Miss needs to be receiving more than I can give. Thanks to people like Cheri who commented on this post and others sharing so honestly either on your blogs or with comments to me, I am going to really delve into seeing about her going to a local preschool that is a developmental preschool. Not only would they completely evaluate her developmentally, but I truly believe she needs this for a while. Maybe a couple of months, maybe more. I know she loves interaction with same-age peers and she could have that at this school. And not all the children are typical, though some are. The truth of the matter is she is lonely and perhaps so am I as we have had little interaction with same-age peers (me either) since she came home. The once-promised play dates before we traveled never came into fruition. A few did, but not from those who promised them. I can only guess the reasons why, but I know I haven’t pursued it so much either. In the end, I know Li’l Miss is a smart, sweet girl who I wish more people could see for who she is. I just wish they could see past her scars and struggles and see the Li’l Miss we get to enjoy every day.
How do I end this post? I’m not sure. I guess I just wanted to share some of the struggles. We have our fair share, though the days are still filled with much joy.