So, believe it or not, the last post I wrote in order to somewhat get to this one. I want to brag about Amber a bit. it's difficult to brag o Amber, and have the full measure of what I mean come across if you do not know about Cheyenne's difficulties.
Amber is an amazing kid. Now, when I was a kid, I didn't think it was possible to have siblings and not fight with them. Amber doesn't fight with Chey. Amber watches Chey. She guards her, protects her, tries to make her happy, and interact with her.
Yesterday, Amber came home from school with a pot of chapstick that tasted like blueberry pie. A girl in her class new she wanted one, and bought it for her. She made sure to tell me it was new in the package, because Amber is a collector.
She has been known to pick things up off the ground, or try to get them from the trash, to keep. Amber has a diagnosis of ADHD, OCD, and Tourettes. the OCD is where the collecting comes in, and she has had many meltdowns over it. Mostly because I do not let her collect garbage. Twist ties have been one of our worst battles... (I may have more about Amber's diagnosis later, but I don't want to get into real frustrations with schools, etc, until I'm through them, calm, and writing in retrospect. it may be awhile...).
Anyway, the chapstick... brand new.. She was delighted by it. The first thing I did was warn her to hide it. I think she had it hiding in her bedroom. Her bedroom door has an alarm on it, just like our outside doors. The alarm scares Chey... She doesn't generally engage the alarm... So, Chey got in. When I found her with the chapstick, it was all over her... face, hands, hair... Chey has ecxema, and is very fond of lotions and things to help skin.. she also eats them... (and other non foods. food? no. non food? yes. sigh). the entire pot, empty...
I tell Amber, and show it to her.. She says, "Cheyenne!" in a somewhat hopeless, accusatory voice... Then said, "huh, I guess it isn't an egg on the inside after all. Can I keep toys in it, mom?"
throwing things away can make for a meltdown, but having Chey destroy it? she just sighs, and moves on with life. (we are soaking the chapstick residue out, and she will make it a home for a tiny toy later). Despite any issues Amber has in herself, I swear she is the best, sweetest, most caring big sister ever.
Saturday, February 15, 2014
Where to begin...
This is my first blog post. I probably should be doing a journal, not a blog. I don't have a single topic type in mind. I just want to talk. Some days it may be crafting. Some days it may be food. Some days it may be family, or friends, or a day out to do something alone. Or maybe I'll never post again. I just don't know yet.
Today I want to talk about my kids. I should start with my oldest (Amber), because she is older, but I rarely do. Most of my focus tends to be on her little sister (Cheyenne).
Cheyenne has a diagnosis of Autism. Most things I post about will her have some correlation to that, because it affects most everything. She is being referred for ABA therapy and intensive feeding therapy. I know very little about either. I'm told ABA is a reward based therapy, and the feeding therapy will be to get her to try more foods. These 2 therapies cannot happen at the same time. One has to be all done before the other. They go 5-7 days a week (I forget which) and 8am-5pm. I don't know if I'll be able to handle all that, and it'll certainly interfere with school. I'm not even sure if it's necessary... These are things I need to figure out before it happens.
We recently took her to the doctor because she wasn't eating much, and sometimes would go days without eating. She has a small list of foods she will eat. When I add in snack foods, it looks long, but it really isn't. We have 2 dinner type foods, one lunch type food, 1 breakfast type food, and a fair amount of snacks. There is only 1 beverage, unless you count mountain dew or diet coke (I don't, and I'd rather she not drink these). it's rice milk mixed with either hersheys or carnation instant breakfast in chocolate. Neither is good when she's sick, and needing hydration... water and electrolyte drinks? koolaid? juice? no way. not having it. She just won't do it. and the clench on this girl's teeth when she doesn't want to try something? fierce.
We had our first feeding therapy appointment, and discovered we'd been refferred to the wrong type of feeding therapy. Personally, I think this was a good thing. The lady there gave us more ideas (ABA, and asking the doctor if there are other tests), and told us what the feeding therapy we actually were going for entails (a couple months, 4 meals a day, all of our time there... I still need to figure out what I'll do with Amber while hubby works. We don't have babysitters... ) and told us about the wait time (it turns out, by the time it's Chey's turn, it should be summer... at least I won't have to figure out how to get Amber off the bus)...
Soon after, I started reading some autism blogs. 2-3 of them mentioned melatonin, and why they use it. It was then that I realized Chey hasn't been sleeping either. I don't know how I didn't realize this before. I called the doctor back, and asked about it, telling her about Chey's sleep. Chey would stay up, in her room, jumping, laughing, turning her light back on 15 times every night, and not fall asleep until 1am.. every night... Then She'd get up for school at 7am. She was having crying laughing fits, and being loud every day in school. It wasn't good for her learning, and didn't help the other kids either.
After significant struggle finding the correct concentration and dosage (they don't actually sell the concentration the doc originally ordered) She is not on a very tiny dose, given in drop form. I'm amazed, because so far, she hasn't fought taking it. This kid is next to impossible to get tylenol in, but was fine with a tiny drop or 2 under her tongue the last 3 nights in a row.
The first night, the new routine threw her for a loop, but she was asleep by 10pm. awake at 7am.
night 2: asleep 9:30pm. awake 5:30 am.
night 3: asleep 9pm. awake 8am (saturday, so I didn't get her up at 7:30 like Iusually do. Sheawoke at this time on her own).
Now, When I don't sleep, I get silly, giggly, cranky, etc, and an upset stomach. no one wants to eat on an upset stomach. Right now, we're doing our best with bedtime, and melatonin (her dose, btw, is about 1/30 of the lowest dose they have in tablets), and I'm watching. I sincerely hope her appetite and moods improve, because the ABA therapy and feeding therapy sound like a long shot... a lot of effort for little reward, since she's not really the reward earning type right now. Then again, getting her to eat food? Like, something besides spaghetti and pizza? that would be amazing!
I have a lot more to share about Chey, and about Amber, but I think I'll save it for later. I need to make peanut butter and jelly sandwiches for lunch now, and hope they get eaten.
Today I want to talk about my kids. I should start with my oldest (Amber), because she is older, but I rarely do. Most of my focus tends to be on her little sister (Cheyenne).
Cheyenne has a diagnosis of Autism. Most things I post about will her have some correlation to that, because it affects most everything. She is being referred for ABA therapy and intensive feeding therapy. I know very little about either. I'm told ABA is a reward based therapy, and the feeding therapy will be to get her to try more foods. These 2 therapies cannot happen at the same time. One has to be all done before the other. They go 5-7 days a week (I forget which) and 8am-5pm. I don't know if I'll be able to handle all that, and it'll certainly interfere with school. I'm not even sure if it's necessary... These are things I need to figure out before it happens.
We recently took her to the doctor because she wasn't eating much, and sometimes would go days without eating. She has a small list of foods she will eat. When I add in snack foods, it looks long, but it really isn't. We have 2 dinner type foods, one lunch type food, 1 breakfast type food, and a fair amount of snacks. There is only 1 beverage, unless you count mountain dew or diet coke (I don't, and I'd rather she not drink these). it's rice milk mixed with either hersheys or carnation instant breakfast in chocolate. Neither is good when she's sick, and needing hydration... water and electrolyte drinks? koolaid? juice? no way. not having it. She just won't do it. and the clench on this girl's teeth when she doesn't want to try something? fierce.
We had our first feeding therapy appointment, and discovered we'd been refferred to the wrong type of feeding therapy. Personally, I think this was a good thing. The lady there gave us more ideas (ABA, and asking the doctor if there are other tests), and told us what the feeding therapy we actually were going for entails (a couple months, 4 meals a day, all of our time there... I still need to figure out what I'll do with Amber while hubby works. We don't have babysitters... ) and told us about the wait time (it turns out, by the time it's Chey's turn, it should be summer... at least I won't have to figure out how to get Amber off the bus)...
Soon after, I started reading some autism blogs. 2-3 of them mentioned melatonin, and why they use it. It was then that I realized Chey hasn't been sleeping either. I don't know how I didn't realize this before. I called the doctor back, and asked about it, telling her about Chey's sleep. Chey would stay up, in her room, jumping, laughing, turning her light back on 15 times every night, and not fall asleep until 1am.. every night... Then She'd get up for school at 7am. She was having crying laughing fits, and being loud every day in school. It wasn't good for her learning, and didn't help the other kids either.
After significant struggle finding the correct concentration and dosage (they don't actually sell the concentration the doc originally ordered) She is not on a very tiny dose, given in drop form. I'm amazed, because so far, she hasn't fought taking it. This kid is next to impossible to get tylenol in, but was fine with a tiny drop or 2 under her tongue the last 3 nights in a row.
The first night, the new routine threw her for a loop, but she was asleep by 10pm. awake at 7am.
night 2: asleep 9:30pm. awake 5:30 am.
night 3: asleep 9pm. awake 8am (saturday, so I didn't get her up at 7:30 like Iusually do. Sheawoke at this time on her own).
Now, When I don't sleep, I get silly, giggly, cranky, etc, and an upset stomach. no one wants to eat on an upset stomach. Right now, we're doing our best with bedtime, and melatonin (her dose, btw, is about 1/30 of the lowest dose they have in tablets), and I'm watching. I sincerely hope her appetite and moods improve, because the ABA therapy and feeding therapy sound like a long shot... a lot of effort for little reward, since she's not really the reward earning type right now. Then again, getting her to eat food? Like, something besides spaghetti and pizza? that would be amazing!
I have a lot more to share about Chey, and about Amber, but I think I'll save it for later. I need to make peanut butter and jelly sandwiches for lunch now, and hope they get eaten.
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