Charlie is so different than most kids but occasionally I'm reminded of how normal of a kid she really is. Sure she can't do the usual things, but in her head she's just a normal kid. So here's a few light-hearted stories:
We've played pat-a-cake with Charlie ever since she was itty bitty. She's always loved it, although her enthusiasm has waned as she's gotten older. Which is totally expected of course. She rediscovered her love of pat-a-cake a few weeks ago when her grandma was playing it with her and she learned to throw her arms apart at the "throw it in the oven" part. Now that's her favorite part and she's not bored with the game anymore.
The other night Charlie woke up 2 hours after I put her to bed and I couldn't seem to get her settled down. She wasn't crying, but she was uncomfy for some reason. I took her from the dimly lit living room to upstairs to my bedroom where the light was still on and very bright in comparison. I laid her on the bed and had to go back downstairs to get the rest of her stuff. When I came back upstairs, she had thrown her arm up over her face to shield her eyes. When she heard me, she lifted up her arm, looked at me, sighed loudly, then dropped it back down. She did this like 3 times and I finally I turned the light off and she let her arm drop for good. Little stinker!
Charlie has had a strong suck reflex since she was about 3 weeks old. She got her suck reflex back at that point and just never quit. We never could give her a pacifier because she would desat, but she would just make sucking motions with her mouth. We've had many doctors comment on it, thinking it's seizure related (lip smacking) but nope...just a comfort thing. She mostly does it when she's asleep or tired. Last week she was having an off night (she's having more of those lately, unfortunately) so I took her out of her crib and sat with her in the rocking chair. She kept fussing. Not a full-blown cry, but she was obviously having issues. Sometimes I think her reflux wakes her up and she's just mad that she's not asleep anymore. Anyway, I sang and rocked and sang and rocked. She just kept making this pitiful whining noise over and over. I noticed that her tongue looked dry so I used my finger to stick it back in her mouth and get it a little wet again. Well she started sucking on my finger and went right to sleep! She sucked for like 10 minutes until I felt she was out enough that I could put her down. I was still nursing Adrian when he was 2 1/2 and at that age, he didn't need to nurse much, but bedtime was necessary. I never think of Charlie as a nursing child for obvious reasons, but she still has the same basic needs as other children, even if they are a bit different. Some kids don't need to suck much after infancy. Others are very orally fixated and need that comfort much longer. Adrian was that way and it looks like Charlie is that way too. I never think of it as the same thing though because she's never relied on ME for that comfort. She just sucks on her own tongue. It was nice for her to need me, even for just 10 minutes. :-)
And an unrelated pic, just because I hate to do picture-less posts:
We've played pat-a-cake with Charlie ever since she was itty bitty. She's always loved it, although her enthusiasm has waned as she's gotten older. Which is totally expected of course. She rediscovered her love of pat-a-cake a few weeks ago when her grandma was playing it with her and she learned to throw her arms apart at the "throw it in the oven" part. Now that's her favorite part and she's not bored with the game anymore.
The other night Charlie woke up 2 hours after I put her to bed and I couldn't seem to get her settled down. She wasn't crying, but she was uncomfy for some reason. I took her from the dimly lit living room to upstairs to my bedroom where the light was still on and very bright in comparison. I laid her on the bed and had to go back downstairs to get the rest of her stuff. When I came back upstairs, she had thrown her arm up over her face to shield her eyes. When she heard me, she lifted up her arm, looked at me, sighed loudly, then dropped it back down. She did this like 3 times and I finally I turned the light off and she let her arm drop for good. Little stinker!
Charlie has had a strong suck reflex since she was about 3 weeks old. She got her suck reflex back at that point and just never quit. We never could give her a pacifier because she would desat, but she would just make sucking motions with her mouth. We've had many doctors comment on it, thinking it's seizure related (lip smacking) but nope...just a comfort thing. She mostly does it when she's asleep or tired. Last week she was having an off night (she's having more of those lately, unfortunately) so I took her out of her crib and sat with her in the rocking chair. She kept fussing. Not a full-blown cry, but she was obviously having issues. Sometimes I think her reflux wakes her up and she's just mad that she's not asleep anymore. Anyway, I sang and rocked and sang and rocked. She just kept making this pitiful whining noise over and over. I noticed that her tongue looked dry so I used my finger to stick it back in her mouth and get it a little wet again. Well she started sucking on my finger and went right to sleep! She sucked for like 10 minutes until I felt she was out enough that I could put her down. I was still nursing Adrian when he was 2 1/2 and at that age, he didn't need to nurse much, but bedtime was necessary. I never think of Charlie as a nursing child for obvious reasons, but she still has the same basic needs as other children, even if they are a bit different. Some kids don't need to suck much after infancy. Others are very orally fixated and need that comfort much longer. Adrian was that way and it looks like Charlie is that way too. I never think of it as the same thing though because she's never relied on ME for that comfort. She just sucks on her own tongue. It was nice for her to need me, even for just 10 minutes. :-)
And an unrelated pic, just because I hate to do picture-less posts:
I wonder if her hair will EVER act normal? LOL
5 comments:
Cute stories!
You should just be glad that she HAS hair. I mean, really... at least she has messy hair for you to complain about. And it helps that she's so freaking cute either way, messy or tamed.
I love the last two stories. Mom told me about the pat-a-cake one the other day, and the other two are just awesome. I hope I can come see her again soon! Try catching some of this cute stuff on video!
It's so nice to be needed! I never have expectations of Amelia as most parents do with a "typically developing" child, therefore, when she does something "typical" -- it's a nice surprise. It's our own type of normal;oD
Ha! You're right, Sherrie. Any chance you have a pic of me at that age? I'd love to share it on here so everyone can see why I marvel over Charlie's hair. LOL
I am a pediatric nurse, and I just want to let you know I think your blog is great. My passion throughout my 13 yr career has been caring for children like Charlie, that will not walk or talk. These children have big personalities in spite of their developemental delays and I am very committed to helping others recognise the great quality of life that most of these children do have.
Thanks for sharing your stories!
Jenn
(kidnurse @ car-seat.org)
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