Rambling

I  should be writing... I want to be writing... but my brain is all over the place,  right now... and, of course anxiety about.. nothing... everything.. unidentified anything?  Is making my concentration null. ...but I'm also bored, so I'm writing the most boring blog entry ever, I guess.  And now I'm mentally picking apart that sentence, because,  really, get a thesaurus... using the same word, twice,  in the same thought? I hate that... the English language has so many descriptive words. Why be repetitious?  I hate reading stories and poetry that has such limitations on use of the language,  yet, I can't concentrate to write correctly... which is why, I'm not writing... or, more importantly,  editing...

Editing... sounds so easy.  I've even highlighted and made notes, on everything that needs even a slight edit... but every time I've sat down to do it, I've gotten overwhelmed,  a headache, and done absolutely nothing... and November is coming soon. I want to write so badly,  but I still haven't edited the last thing, and I had so many more stories to happen in that world, and after that story.    ...or before that story... but the end... and the edits... sigh.

So, I think I should write something unrelated... just get back into it.. but all I get, is this rambling... I need some peace.. in my mind.. so I can do what I love... or even remember what I love, or loving it...

Damn navel gazing depression

There are days...
The words seem to seep from my ears..,
Emotions and pain, begging to be heard...
I promised myself I wouldn't..
Wouldn't talk, wouldn't share, hang dirty laundry, anywhere...
Navel gazing does no good, I know this... the more you focus on the problem,  the worse it hurts...
But the words seep from my ears, from my eyes, as I cry...
Overwhelmed,  long past a simple sigh...
Hidden emotions, dragging me down..

Need a way out, need a hand.. need a heart to understand. 
I'm not giving up, not giving in.
Those precious to me, keep me from the end...
But some days..Some days, I  can't help but cry...break down, curl up, I can't let go..
My heart, my treasures need me more...
Every day, every minute,
I  keep on, even when my hearts not in it.
Can't let them down.. Can't let them see..
Their hearts are so much more, than what's lacking inside of me.

..so I'll just hide.. and be the mother they see... and avoid again, despair inside..
They deserve ,more than I have, more than I can be... I'll live for them, until I can again, live for being me...

Amazing things... and other things...

 I haven't posted in awhile, but I should have. I have very happy updates!  
On mother's day, I got a gift that made me cry... something I have been waiting 8 1/2 years for! I took Chey's gift for me, from school, in to her room to pen, and asked, "Can mama open her gift now?" and she said, "mommy." She has said daddy and grandma before, but this is the first time she said, "Mommy." to me!

Today, Chey just got off the bus. I took her hand, and she stopped, and stood in front of me, holding her arms out, to get me to pick her up. I do, often, refuse, so that, at 8 1/2 years old, she doesn't think I'm going to carry her every time. This was not one of those occasions. Today, I picked her up in a big hug, and was amazingly rewarded.. she sang me a song she made up right there!!! "I got you, dadada! Oh, I need a hug!" as she kind of dance back and forth. Now, we just gotta work on the mama/mommy thing...lol. it happened once, and it will again! :D

Last week, we got Amber's testing/meeting done for reevaluation for spec ed. She was true to form, on distractibility,  interrupting, and fidgeting..etc. I was a bit concerned that she'd have an off day for this..lol.  
She is doing much better in school lately, and I'm no longer certain she needs an IEP, but I figured I should still see it through. I had definite reasons when I requested this, and if next year were to start poorly, I'd kick myself for not pursuing it.
  We get our results at our appointment Monday. School is almost over, and setting up a new IEP at the end would be a crazy amount of work for her teacher.. but we can still use the last one, and the 504 as guidelines, if we do need to do it. Hopefully, that will make much shorter work of it.  
Her school told me that a 504 is a legally binding thing, and would go with her, but I have also heard that a 504 is building only. We intend to move this summer, and we need these things in place, and required, for next year. I do not want another year like this, where I had to fight tooth and nail to get them to follow the plan, or where she was being reported on as a bad kid, misbehaving all of the time.
  We do have her on meds now, that help greatly. She seems far more able to control the behaviors, and the distractions while she is on it. Unfortunately, hubby is very against medication, and we have been fighting over it constantly. He said he doesn't want her on it this summer. I, on the other hand, do not want my sweet little girl depressed, frustrated, and cranky all of the time, because I'm getting after her for interrupting, yelling, or not focusing, etc, 20x every hour. It isn't good for either of us, and makes everything stressful. Unfortunately, arguing with hubby daily doesn't work either. I tend to cave over time, for my sanity, but there is no cave for sanity here. It's more about who I'll be fighting with, than about how to fix both.  
  And Chey has been waking early around twice a week. She's had impulsivity issues that need help. If she can concentrate, she does amazingly. There are possibilities here too, that hubby fights against. She has the ability to do so much more, and the desire to. I've seen it.  
so, how to help everyone, and not be constantly stressed out myself. I'm still working on that one. We'll get there. It's just the trip that's frustrating..

These are the things lately...

1) We've been working with Chey's doc to get her diapers paid for by medicaid. We got everything completely done, but we have been waiting for the doctors prescription to go through. The supply place needs it written a certain way, so they faxed them the form on Monday. I left the doc a message to tell her it was there on Monday, and a message to tell her that the desk has no availabilities for her in the time she requested to see Chey again (she requested I do this). Today (Wednesday), I called the supplier, to see if the script was in. it wasn't, so I called the nurse. She took my number, and the suppliers fax number, said she'd look into it and call me back. Still no word from either of them. Hopefully, they'll get it done tomorrow. I also got in contact with the people who the doctor recommended concerning Chey. These are people who will come to our house, evaluate Chey to see which services and therapies she would benefit from, and gets us in contact with those therapies. The doctor is also working on getting her into ABA therapy. The next appointment, we go in to discuss Chey's manic giggling. It has gotten out of control, and even she gets frustrated because she cannot concentrate when she can't stop laughing. She has started attempting to hold her breath to stop laughing. it doesn't work... fortunately, she doesn't hold it long enough to be potentially harmful.
the last 3 weeks have involved taking her to her regular doctor because she stopped eating, or ate a tiny amount then stopped eating for a few days. She had only lost 2 pounds since her well child in november. that isn't much, but she was already in the 10th percentile for weight. We got referred, and took her to a feeding therapy, but we were referred to the wrong kind of feeding therapy (help with chewing and swallowing, not help with getting her to eat). I learned about melatonin from 2-3 blogs I follow (not just 1), and realized Chey was also really only sleeping about 5 hours a night. I talked to the doctor about it on the phone, and she made some dosing recommendations. Melatonin is not a prescription drug, and is not needed in even close to as high a dose as comes in tablets,  to help Chey. Once we started her on the melatonin, Chey not only got more sleep, but she also started eating again. She gained 2 lb in 2 weeks, by her follow up appointment. We decided we can back burner feeding therapy for now.

Then there is Amber. In January, the school decided Amber no longer qualifies for special education, and IEP. I have had difficulty getting them to follow the IEP correctly all year as it was. Several emails with the teacher indicated that she was doing a lot of things related to her diagnosis (to her detriment) in class, yet they removed her because "She wasn't showing signs in the classroom." At her 504 meeting, I submitted a request for reevaluation for special education by an outside party. I gave my reasons why (which I actually do not wish to detail to much here), and got approved. I am waiting for a paper stating this, though I received confirmation over the phone. Then I will be making an appointment with a good doctor for this type of thing.
 In the last few weeks, Amber has had significant setbacks in school. Her behavior has been deplorable, and she has been actively trying to get sent out of class into the hall, office, or resource room. Today she threw a complete fit (not crying. misbehaving) in class, and the adjoining room (where the coats go). over the weekend I made her write a report about how she will behave from now on. yesterday was a god day at school, but monday and today, she has had to rewrite it, in addition to her other work (homework, and extra chores because of behavior. we also remove all fun on technology and tv).
I am at my wits end. Hubby is extremely against medications, but I may have to resort to them anyway. This can't keep up. Mind you, it seems to only be needed at this school. She was at this school 3 years ago, and had to be on meds then too. They do not seem to be able to deal with her, and she gets worse and worse. The 2 years in between, they paid for her to go to a special class out of district, because they had no programs for her. She did wonderfully in those classes. She did so well, they figured she "got better" and moved her back.
This year, the teacher has been swearing up and down that she is having a good year, and they insisted on pulling her off special education... meanwhile, I am getting emails and letters from him about her bad days. I do not know if he means she is doing well, academically, or if, when he says that, he is only thinking of her good days. I do know that she got marked down on point sheets when she was bad at the previous school, ad that she was never bad enough to lose any of her recesses, field trips, etc. what he refers to as a good year, is leaps and bounds from the type of good in those 2 years. in fact, I have never seen her so sullen, so frustrated, or in so much trouble (sort of. 3 years ago she got into a lot of trouble too, but she was not openly defiant. She just had meltdowns from being overwhelmed, or because her OCD collecting couldn't resolve in her mind that garbage needed to stay in the garbage. This year, all of the trouble seems far different).
She is beginning to notice that many of the other kids do not want her next to them in class, and beginning to think her teacher yells at her too much. I think the kids are frustrated that they cannot hear or concentrate through her disruptions, and the teacher is at his wit's end too. This doesn't help Amber's feelings about it, but it still explains it. Amber feels the need to be loved by everyone, and the center of attention. That is impossible when she is loud, disruptive, and prevents others from being able to talk, or listen. She is nothing like this at home, except when receiving punishments for the bad that happened at school. at home, she is still the sweet, loving, polite little girl I know. I do not doubt her behavior at school. I just don't know what to do about it.

Hopefully, we can get some answers from the doctor who reevaluates her. I will probably also take her in to her regular doctor's office to discuss a different kind of meds. The first set made her ill. We need better choices. We tried a psychologist once, but after taking her back for 2 months, we still hadn't even met the actual psychologist.. We were driving a very long way just to get juggled around. Again, we need better options. Sigh.

Big sister stuff

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.

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.