Wednesday, January 31, 2007

Well, dd#1 and the new baby are home from the hospital and my older grandkids went home as well, and my house seemed a little quiet yesterday. 

The baby is doing well... nursing all the time, of course, and the older kids are doing pretty well. R, the oldest is 4 and she's managing just fine... she's got the whole big sister routine down pat. J who is just 2 is struggling with no longer being the baby... By the end of yesterday my daughter sounded pretty hassled and frazzled (J can be pretty ornery when he wants to be!). Other than that though things are going well at their house... 

I spent most of yesterday morning (even into the afternoon!) on the phone. I've been feeling as though the pdoc is questioning that I'm doing all I can for M. The unspoken message is he'd probably be doing better if I would just stop being such a "homeschooler" (i.e.: isolating, distrustful of public education, etc) and get him involved with programs in the community that are set up to support people like him! I had started wondering if maybe she was right... how do I know I'm doing the right thing, if I don't know what the other options are? 

So yesterday I spent hours on the phone chasing down people and programs that might serve individuals who are diagnosed with both mental illness and a developmental disability. I started with the mental health centers that we could access using M's medicaid. (We have always gone to private mental health care providers.) At first these centers said we should just come in for an intake, and then M would be assigned a team (pdoc, tdoc, case mgr. etc). As I spoke to the intake person though, and made them aware of M's developmental disability and his IQ, they each back pedaled... saying there really weren't any programs for him through their organization. They were very nice, and helpful, but each suggested I needed to access support through the dd community. (Which I have... that's the 5 year wait list he's on for services.) 

They also each had a couple of other numbers of programs that might be helpful to us, but each of those program too said that they don't have the expertise to work with him. I called the ARC as well, and spoke to the sweetest person there... Once she found out that I had served on the BOD for the ARC (in the area we lived in before moving here... so a different ARC than I had called) we had a great talk about people we both knew in the DD community. She was appalled at the lack of support we're receiving and gave me a few more numbers to call. But with only one number left to call, after following rabbit trails from number to number, organization to organization, most of yesterday... I think it's unlikely that this number will lead to a program that will meet M's needs. 

Yesterday was actually a picker-uppers for me in a strange way though... Literally everyone I spoke to was extremely nice, concerned and tried to be helpful. It was wonderful to discover just how many truly nice people there are working in the DD and mental health communities and to find that they shared my frustration at the lack of services available and the low priority our state puts on helping people who are developmentally delayed and/or mentally ill. It also reinforced (again!) the right-ness of what I'm doing... and gives me "ammunition" to use the next time the pdoc starts suggesting that things would be better if I would only step this ridiculous homeschooling and get M involved with what's available to him! ;)

Needless to say we didn't get a minute's worth of school done yesterday... but the kids were so good while I was on the phone we rewarded ourselves with a day off. We went to town and poked around a new thrift shop (finding several bargains!) then finished up the afternoon with floats from A & W. Mmmmm....

Sunday, January 28, 2007

Here he is!

Update on the new grandbaby... 

 Both Mama and baby are doing fine. Baby's blood sugar was very low and he had some trouble keeping his temperature up at first... but he's doing better now. Mama was running a little bit of a fever and feeling seriously yucky for awhile, but she too seems to be doing much better this evening. 

 Here he is, just four hours old...  

 I love the smile on new big brother J's face!

 

 I just had to post this picture too... 

Here are the new baby's big sister and brother, napping at Grandma's house this afternoon. Isn't there something just so irresistible about sleeping children?

Good news!!

I'm a grandma again!

He was born about 11:45 this morning, and weighs 8 lb 14 oz.

Pictures soon...

Friday, January 26, 2007

What we've been up to...

It's been awhile since I've posted... No reason really, I think we've just been hibernating lately.

We've still got feet of snow on the ground... Well, that's not entirely accurate. We have feet of snow on most of the ground, in the places without snow we have deep, sticky mud. Funny... the snow is looking pretty good to me, compared to the mud that's starting to replace it! (Which is a good thing because it looks like we have more in the forecast!)

School is coming along... We started a unit study on Dr Martin Luther King Jr about a week ago, which is going pretty well. I've been really happy with the resources I've found on the topic and with the way the lapbooks are going together... but I may have to cut this unit study short because it's been a hard one for R, triggering a lot of anxiety. I've carefully glossed over (or omitted) the cruelties of the fight for civil rights, leaving out the violence, the KKK, etc. But knowing that MLK was assassinated scares her, and it's something she's having trouble letting go of. 


She needs to know about the history of her ancestors, but it's hard to teach her... not only because I'm white... but also because prejudice is something she's so rarely experienced. (Thank you Lord!) There is only one time so far in her life (that I know of) that some one said hurtful things to her about her skin color. To my knowledge she's never heard the "n" word... So it's been a tricky subject to teach. How to make sure she knows about this chapter in her people's history... without overwhelming her or triggering too much of the anxiety that's always right below the surface.

Once this unit study is over, I've already planned a nice, fun, low key one to do next. We'll be using the wonderful book "The Tree in the Trail" and doing it Five in a Row style... Using it as a starting point to lessons about nature, geography, Native American peoples, and history. Rather than a lapbook, I think I'll have the kids make regular bound books to hold their work. (I have a lovely book binding machine that I found in a garage sale... it has been worth it's weight in gold to me!)

I've started something a little weird with our math studies. We've been using Making Math Meaningful this year, and it's been ok. After Saxon math last year, this year has seemed easy... but I don't feel like either of the kids are being challenged by MMM. So, I ordered the same grade level of Saxon Math and we started it a couple of weeks ago. R especially hates Saxon math and her attitude (and cooperation) drop quickly with a daily diet of Saxon. So I told the kids we'd alternate... do MMM one week, and Saxon the next. So far it's working better than I expected... They both like the novelty of going from one curriculum to the other, but they do have enough time with each one to really make progress. We've started Saxon at the beginning of the year (and are halfway through the year with MMM) so what's happening is that Saxon is reinforcing skills they worked on earlier this year in MMM, and working on skills that MMM doesn't. The only downside was the extra expense of buying a second math curriculum... but I shopped around online and found everything I needed either used or very discounted. (It was still pricey though!).

Better go, the sun is coming up and I have hungry animals to feed! (No not the kids... they're still asleep! :)

Sunday, January 21, 2007

Brrr.....

It's been very cold here the past day or so... 

 I woke up this morning and everything was covered with a delicate filigree of ice. It was so beautiful I had to take pictures, of course. The big evergreens on the hill behind the barn looked majestic (and Christmasy!) with their dusting of white...

 

 But I really loved getting up close and seeing the delicate magic created by the snow and ice.

 

 Even the weeds were transformed into things of beauty by the snow.

 

 This yucca plant had what looked like strings of ice diamonds dangling from it's
 leaves.

 

 They seem to be attached with tiny threads, the remains of a spider web perhaps?

 Whatever.... I thought they were beautiful.  

 It's supposed to warm up tomorrow... I'll be a little sad to see the ice melt.

Thursday, January 18, 2007

Canine confusion

R's new dog, Sweet Pea, is a Pembroke Corgi. 

Corgi's are herding dogs and supposed to be pretty smart. According to this scale rating the intelligence of the various dog breeds, they come in at #11. Border Collies come in first... no surprise there! Afghan hounds are at the very bottom of the list. 

 Sweet Pea was acting a little like a short, round, afghan yesterday... 

 Remember the rats that she was so fascinated with? She discovered them in M's room on Weds. and spent a lot of time just sitting and watching (stalking? planning how to devour?) them.

 

 Before disaster struck I decided to move the rats. So yesterday morning, I moved them to a high shelf, and moved M's boom box to the low shelf. I did this in front of Sweet Pea... (who was sitting watching the rats again!) 

Here's the afghan part... After sniffing the boom box for a few minutes, she went right back to her post. Only now she was staring intently at the boom box. 

(Waiting for rats to appear?)

 

 No, it wasn't turned on or doing anything exciting. No lights, bells, or whistles... 

As I straightened in M's room, I kept watching her... waiting for her to tire of guarding the boom box, or notice that the rats were right behind her. But she never tired or lost her concentration. She was "on the job" and not about to shirk her duty..

.  

 For awhile the tables were turned... rat watching dog.

 

 I finished my work and left the room with Sweet Pea still on duty at the boom box. I came back 10 minutes later and peaked in the room. 

 Yup, she was still there.

 

 Poor Sweet Pea... yesterday was a rough day for her.

Wednesday, January 17, 2007

Well... yesterday's big storm blew itself out shortly after the sun came up. We only ended up with a tiny bit of snow (hard to tell how much because it blew around so much) and the sun was out by mid-morning. It's still bitter cold though, and I'm not looking forward to my trip to the barn this morning. 

Maybe I should sit and blog first... 

 Things are still uncertain with M, but each day that goes by makes it less likely that he'll be going into the hospital before our trip on the 30th. The pdoc is supposed to call today or tomorrow to talk about what to do... (She called yesterday but just talked to M, she'll call again in the evening so we can talk uninterrupted.) 

 M is actually doing pretty well right now with the med changes. I've managed to lower the haldol another .25 mg without any adverse effects, so that's good. I still have month's worth of decreases left (at .25 mg a week) but if things don't get any worse this might just be do-able. We're replacing the haldol with seroquel. Yes, that's the medication I threw fits about R taking, the one I stopped without the pdoc's approval, and refuse to ever give R again. But M is not R. And she can manage without the seroquel, but M can't manage without something to replace the haldol, and seroquel was the only thing we could safely add (because of the meds he's already on), we know he can tolerate, and might even work. It carries a high risk of metabolic problems, unfortunately... like diabetes. It's a risk I wasn't willing to take with R... but it looks like I can't avoid with M. 

 So we're trading the tardive dyskinesia worsening for a high risk of diabetes. You know... sometimes this whole schizophrenia thing feels a little like a lose/lose situation. 

 My friend from the hospital (who used to be a phlebotomist) taught me how to draw blood to check M's blood sugar and insulin level, so I can draw for that at home now. I've told the pdoc I'd like to check those labs every other month, just to keep on top of any metabolic changes from the seroquel. M's blood sugar is already a little high, but still within normal limits, his insulin is fine, but his triglycerides are very high. It looks like I'm going to have to make some changes to his (our) diet to try to bring them down. 

 Ok... enough medical stuff. 

 We're still trying to get our routine back after the holidays. The past couple of weeks we've been following Theresa's Term at Hogwarts unit study (Thank you Theresa for sharing it, you're awesome!) and the kids are loving it. 

They are dressing in "uniforms" for school, and I'm trying to be very school marm-ish... making them sit up straight and mind their manners in school. It's been fun, but I'm feeling ready to get back to our regular school day... It feels like it's been ages since we just sat down and did our regular math, spelling, etc. 

I think we'll be done with Hogwarts by the early part of next week, and we'll sneak in a week of regular school before we leave on our trip. 

 Here are a few pics from Hogwarts: M working in one of his (Theresa inspired) 
notebooks!

 

 R in the middle of the "muggle or magic" experiment... (she's holding her magic wand)

 

 The goblin slobber was a huge hit!

 

 M learning about tectonic plates... 

 

 Thanks Theresa for sharing this incredible unit study! 

 R is doing well. She still misses Grant terribly, but has reached the point of having more good days than bad. She and Sweet Pea are getting along wonderfully, and she says that it's easier to sleep with Sweet Pea sleeping right next to her bed. Since we got Sweet Pea, R has only has two bad nights... It's been wonderful to have her sleeping again! 

 Sweet Pea seems to have made her peace with Emma and Quin. Every once in a while she'll still get snappy with them, but for the most part peace reigns once again in the Woodstone canine kingdom. Unfortunately, she's discovered M's rats. She's so funny when she watches them. It's total concentration (not even moving to get her dinner!). She seems fascinated by the little moving creatures behind the glass... 

 I think it's probably time to move them to a higher shelf!

Tuesday, January 16, 2007

Well... it's blowing a gale outside. 

The wind is whistling down the chimneys, and the snow is blasting sideways rather than falling softly to the ground. 

 I keep looking out, watching for the dawn to start lightening the sky... but it's still very dark for this time of morning. The clouds must be very thick and heavy over us. It's always a little unsettling when I can hear a storm outside, and see little bits of it, but it's too dark to really see what's going on. 

Do we have 1" of snow or a foot? 

Is anything important blowing around the yard? 

Have the barn doors blown off? (Yes, that did happen once last year, one double stall door blew complete off. Luckily it didn't hit any of the animals) 

 I'll feel better once the sun comes up. Yesterday was a beautiful morning, and I just had to snap a few pictures before it got away...

 Sunrise.... It looked like cotton candy floating in the sky.

 

 Coming back from the barn... I like the way the morning sun was just beginning to peak around the house.

 

 R and Sweet Pea out for an early morning walk.

 

 I'd rather stay in here... nice and warm... drinking hot chocolate and posting pictures, but it's light enough to go feed the goats so I'd better run.

Sunday, January 14, 2007

It's polar bear day!

Thanks everyone for all the support and prayers for M. He continues to be very unstable, but is managing. I've had to increase his meds, which is always a concern (because of the side effects) but there just seem to be no alternative.
 ********************************************************************* 
It's cold here... VERY cold... and it's snowing again. It was -12 degree (F) yesterday morning when I was at the barn feeding the animals, this morning was better... but it was still -3! 

 This winter has been a cold, snowy one... 

For the past month we've had weekly snow storms and seem to be stuck in a pattern of spending about half of the week cleaning up after the last snow or preparing for the next one (bringing firewood onto the front porch, hauling hay to the barn, plowing out the driveway, digging out the gates and barn doors, cleaning out the barn, stocking up on groceries, stopping at the library for books and videos, filling up the cars, etc) and the other half of the week sitting inside watching it snow. 

 We've been snowed in so much lately that I decided to declare today a holiday, M and I decided to call it Polar Bear Day. We started the day with a special butter braid breakfast (butter braid is our traditional "holiday breakfast"... we have it on every major holiday, but never on "regular" days). For lunch we had tuna melts, remembering the polar bear's love of fish. (M reminded me that polar bears eat mostly sea lions and seals, but I'm out of both of those so tuna had to do...) I'll think of something special that we can have for dinner (maybe even sending dh through the snow to town for pizza and soda!), and I'm making a snowman cake for dessert. 

 Presents always make a holiday fun, but since we just finished Christmas (and the last thing these kids need are more presents!) I think we'll make presents for the animals. I have pine cones, peanut butter and birdseeds... so we can make treats for the birds and hang them in the big evergreen trees out back. We'll scatter some lettuce and carrots outside for the wild rabbits, and I even have a jar of dog biscuit mix for us to treats for the dogs! (A friend gave it to us... you just add water and roll it out like sugar cookies.... it even came with a dog bone shaped cookie cutter!). 

Hmmm... I still need to think of a treat we can make for Stormy and the goats. 

Just before lunch we decided to take a "polar bear walk". When we went outside Stormy and Rose both stuck their heads out of the barn, curious to see what we
 were doing... 

 

 The sun was bravely, but unsuccessfully, trying to break through the clouds...

 

 Bundled up and ready to go!

 

 We had to take our walk in the little pasture because the gate into the big pasture was frozen shut. Here are the kids (and dogs) walking in the path we dug/plowed to the barn so we could get hay to the animals...

 

 Quin, a little snowy and looking impossibly cute.

 

 We walked all the way across the little pasture and up the hill, then visited the goats and Stormy. We finished our walk by racing across the little pasture (a bit tricky when the snow is 15-18" deep with a frozen crust, but a good way to warm up... R won), and then headed back to the house. 

 On the way back, M fell and got snow all over his face and on his glasses. Here he is as he's starting to thaw out! (yes, that's snow inside his glasses!)  

 Happy Polar Bear Day everyone, stay WARM!

Friday, January 12, 2007

A deep and heartfelt thank you to everyone who so kindly offered words of advice, good thoughts, prayers, and support after my last post...  All the comments were very much appreciated, and they really helped me regain a little perspective.

There is nothing new going on in terms of M. The pdoc is still out of town, and I'm still working on slowly making the med changes. Time will tell if we can keep M home through this...

Thursday, January 11, 2007

Just thinking outloud...

This is likely to be a different kind of post. Rather than a "what we did today" post, this will probably be more of a "thinking out loud to process something" post...
If you're not into rambling, you might want to skip this... go visit my friends here, here, or here. They surely have more interesting stuff going on.


I have a confession to make.

When it comes to M and hospitalization it's much easier for me to talk the talk, than walk the walk.

I can tell myself all the very logical, responsible reasons why an inpatient stay can be a good thing.

I can tell myself that the people who staff the inpatient unit are good people. People who care about children, especially mentally ill children.

I can tell myself that M will have the benefit of full-time PROFESSIONAL staff (versus my decidedly amateur status), and will probably enjoy his time there.

I can tell myself that it would be good for R and I to have a break from the schizophrenia, and at 15 M is plenty old enough to be away for awhile.

And I can tell myself that Dr B will be there, her office is on the unit. She cares about him and I can trust her with him.

But... when push comes to shove, and Dr B says " I do think that it would be good if M could be in-patient in order to get the changes to happen more quickly. The process might actually take some time..." My reaction is one of panic.

Heart pumping, can't catch my breath, fight or flight, maybe-I-should-take-one-of-R's-klonopins, kind of panic.

The kind of panic that makes me quickly hide, in a seldom used folder, the email that started the feeling, because just seeing it in my inbox brings the panic back.

The kind of panic that makes no sense...

Or does it?

Do I listen to my head or my gut?

My gut is sending me an unmistakable message. "Red Alert, red alert!" it's screaming at me, don't do this.

While at the same time my head is telling me how foolish I'm being, and all the good and logical reasons to have M admitted.

I hate this feeling.

Before M had schizophrenia, before I knew what it really was, I would have thought of this feeling as a "schizophrenic" feeling... kind of a split personality thing. I know now that schizophrenia has nothing to do with split personality. (The word "schizophrenia" comes from the Greek words "schizo"- split and "phrenia" - mind, but refers to the split between reality and psychosis; fragmenting of the mind... not a split into different personalities.)

I probably hate this feeling most because I don't know what to do with it.

Listen to it?

Ignore it?

Run away from it? (which seems like a very attractive option right now)

It's going to take a while to sort this out.

I'm glad Dr B is out of town.

Maybe she'll just forget about admitting M.

The neuropsychiatric unit is full (LOL, which is easy when there is only one bed!), and there are five kids on the wait list. It will be awhile before his name comes up... maybe I can make enough of the med changes by then that we won't need to talk about an inpatient stay.

Surely she wouldn't/couldn't bump M to the top of the list...

And we're going out of town the end of the month. Plane tickets are bought and paid for... He has to be home, and functional, by the 28th at least. (Thank you Lord, for the impulse to buy those plane tickets. Thank you J for letting us come and visit!)

That's only about two weeks away, probably not enough time for an inpatient stay.

Maybe I can just make the changes at home and he'll be fine...

If the pdoc would just give me a schedule of the changes, rather than me having to call her all the time to figure out the next step, I'd have a better chance of making them on my own.

LOL, I think I need a shrink...

....anybody know a good one?!

I'm drowning in psychiatry and yet my best, most effective "therapy" is cleaning the barn, working with the animals, and working in the garden.

Too cold for the garden, I just trimmed the goat's hooves, and the dogs are all fine.

The barn could use a good cleaning though...

Wednesday, January 10, 2007

mostly boring medical/psychiatric stuff

We spent most of yesterday up at Children's Hospital. 

Yesterday morning was M's appointment in the Movement Disorders clinic... an appointment I'd been anxiously waiting for. They only have this clinic one half day every other month, so we were lucky to get in as quickly as we did. (It only took about a month...) Neurologists from the University of Colorado Health Sciences Center do the clinic and I was very impressed with our experience there. 

 A resident took M's history and did the initial exam, then Dr Olga came in. She's Russian, and her last name is long, complicated, full of consonants, and hard to remember (so I'm not even going to try!). She confirmed that yes, M does have tardive dyskinesia. She didn't hassle me about the meds, which was nice (that's happened before with other doctors, and I was worried about it happening again yesterday...) and she didn't talk to me like I was stupid... which was very nice! (We've had a couple of not-so-good neurologists, so I guess I wasn't expecting much... she was a nice surprise.) She also said that M also has some Parkinsonism, which is also a side effect of the meds he's on. 

 Dr O would like us to try and stop two of his meds, not just the haldol. I'm pretty sure that stopping both meds would be virtually impossible. I've tried before, a couple of times, and each time he becomes so disconnected that it's a nightmare for all of us... The meds are the only things keeping him connected to reality. She did also say we could increase one of his side effect meds to treat the TD, and suggested another medication for TD that's available. If neither of those things work, there is a medication, available in Canada and Mexico, but not the U.S., that works well and we could try. If none of those meds work, there is an type of injection that might work, and finally... if all else fails... there is surgery. 

The surgery would be to implant a "Deep Brain Stimulator" that works like a pacemaker for the brain. It would be finely tuned to work on the portions of his brain where the TD is originating from. This is not something we're considering now, or in the foreseeable future... But he's going to have to take antipsychotic medication for the rest of his life, and with TD starting so early it's nice to know there are some options for him as an adult. Options that might help lessen the disfigurement of TD. 

Unfortunately she said not to try the branched chain amino acids. She says they haven't been shown to be effective, and would be risky to M. So... it looks like that door has closed. 

 The appointment took a couple of hours, so we headed next to the cafeteria, got some lunch, then looked up a friend who works at Children's. After visiting for a little bit, I impulsively decided to try and check out the new psych unit. (Children's recently moved into this completely new, very nice, campus.... this was our first time there.) 

 Even a psych unit for children is a locked unit, and confidentiality is protected by not allowing anyone except parent and staff on the unit, or in contact with the kids in any way. So I wasn't sure how far I'd get in breaching the defenses of the new Behavioral Sciences building. 

 It was fairly easy to talk my way past the security guard downstairs. I dropped the pdoc's name and he sent me up to the second (I think) floor... where the day treatment is. When I got to the second floor things got a little more difficult. I dropped the pdoc's name again and said I wanted to tour the unit. They weren't impressed with my name-dropping and said that touring the unit wasn't allowed. I explained that I wanted to see the neuropsychiatric special care unit (for kids with developmental disabilities and mental illness), not the regular psych unit. That got me a little farther. They called upstairs and talked to someone on that unit, after some discussion they escorted us upstairs to the 4th (?) floor where the neuropsychiatric unit is. 

 Then we waited. M was sprawled out on the floor (we'd been at Children's for more than 3 hours by then!) and R was curled up in a chair finishing her chips from lunch. The kids from the unit were having lunch in the room next to us and I discretely watched and listened to them and the staff that was with them. Everyone sounded happy, but the room was under control too... no one was running wild. The staff was sitting with the kids, eating together... I liked that too. 

Finally the nurse came out and explained that I couldn't go any further than I was, for confidentiality reasons. But then she sat with us for 15-20 minutes answering my questions about the unit and even acknowledging the problems the regular psych unit had had during M's admission. She talked to M and R, and took time to answer all my questions (and listen to M tell her what he'd gotten for Christmas, had for lunch, etc). This nurse was wonderful, and is in charge of the N-P unit! I was impressed. We talked about what a wonderful doctor Dr B is, about how they would manage M if he were admitted, and she was very reassuring and seemed to really "get it" in terms of complicated kids like M. 

 If we aren't able to make the med changes we need to, at home... I think I'd be ok with him being on that unit. Dr B's main office is right there, on the unit. She would be there for him during the day, and I trust her with him. (She is the medical director for N-P unit. She's out of town right now... had she been here the whole process of getting upstairs would have been MUCH easier!) I was assured that none of the stuff that went on last time he was admitted would be taking place (medication errors, safety issues... big men threatening to throw me out!). I was glad I went to see for myself. Although I never could get past the locked doors, I saw (and heard) enough to feel better about taking that step, if need be. 

 Is anyone still reading? 

Probably not.... this has gotten very long. 

 Everything else is going ok. Sweet Pea is starting to settle in, she's not as cranky with the other dogs and is learning to go up and down the stairs (although it's still not her favorite thing to do!). R is sleeping better, she likes having Sweet Pea next to her at night... 

 We are still working on changing M's meds. It's slow going and he's having more symptoms again, unfortunately. I'm not sure how much more we'll be able to do right away... We are going out of town the end of the month (don't tell the kids, it's a secret!) and M has to be stable enough to travel. So I might try just one more small change in the meds and then leave things alone until we get back. 

 I'm hoping for a quiet day today... We've had two days in a row of doctor appointments and I'm tired... I'm ready to put on my "bibs" and stay home today and veg.
Oh.... it's been a rough few days. 

After having several really good weeks, M crashed on Sunday. Unfortunately, it wasn't a minor deterioration... it was total crash and burn. I'm not sure what set him off, R spent the night at her oldest sister's house Saturday night... and that might have unsettled him. (Although he didn't seem to mind, he likes one on one time with dh and I.) It might have been that the holiday excitement and anticipation kept him propped up through December, and once the holidays were over... Well, what happens when you have something propped up and remove the prop? 

Who knows why M's good spell ended... maybe the stars weren't lined up just right, I don't know. It is something I think about though, because the pdoc always asks... but it's a hard question to answer. Out of respect for M's privacy I'm not going to go into details about what happened, it was bad though... The worst episode in quite a while. It was bad enough that I called to find out if the inpatient unit had any open beds. (they didn't) I'm afraid I didn't make the best impression on the pdoc I spoke to when I called the hospital... which probably doesn't matter except that he works with M's regular pdoc and I usually like for her to think I'm a reasonable and calm person. 

The hospital pdoc kept me holding 20 minutes (on an emergency call!) so I was out of sorts by the time he finally made it to the phone. Then he said there were no beds, there were transferring kids OUT, but I could bring M in anyway if I "couldn't manage things" (implication... if this is too much for you, I guess we'll have to help) and that I'd just have to let the "chips fall where they may" in terms of where M would end up. (possibly in a public psych hospital) 

Those of you who know me know that "letting the chips fall" isn't something I'm likely to do with my kids... especially my two youngest! (who are so vulnerable) 

The pdoc's suggestion that we couldn't manage things also pushed buttons, so I rudely let him know what I thought of his suggestions and hung up on him. It felt good at the time... but I feel a little guilty about it now. You would think a pdoc would be good at talking to people in crisis... The whole thing has left me feeling sick of mental illness in general, and sick of psychiatrists in particular. 

M's pdoc has been out of town since before M crashed, but has tried calling and emailing. I didn't take her call, but I did reply to her email... She wants to talk about ECT again. I've done some reading about it since the last time she suggested it, and it does sound like a treatment that has helped people... especially people with severe depression. M isn't depressed however, and (from what I've read) it doesn't appear to be nearly as effective with schizophrenia. Also in my reading I stumbled across a book that states that ECT is illegal in my state for anyone under 16. M isn't 16 yet... Why is something illegal even being suggested? I read through the statute about ECT and it appears to be an issue with the patient's ability to give "informed consent", and children under 16 might not be considered old enough to give that consent. (Which I agree with 100%) I'm guessing that M also being developmentally delayed would make it even less likely that he would be considered capable of giving informed consent to the treatment. 

So I told M's pdoc no. I'm disappointed that she even suggested it without researching the legalities of it, and I see no point in talking about it further, or getting a second opinion from the ECT pdoc. 

Unfortunately that leaves us with nowhere to go in terms of M's treatment. I've increased his meds (and his side effects) and he's a little better. That's about all I can do except hope that this storm passes quickly and he gets better, more stable, again soon.

Monday, January 8, 2007

our homeschool schedule

Robin has put together a great daily schedule for her homeschool, and asked about how other homeschoolers structure their days. So.... I thought I'd share what our daily schedule looks like. 

I get up early to wake dh for work, and get the animals fed and taken care of before the kids get up. I usually steal a little time on the computer then too... 

The kids get up early, but since mornings are M's roughest time of the day, I don't try to get any school done until later. M usually plays or watches TV (PBS or a video) during the morning, while R plays outside, or with the animals, or watches TV with M. If he naps, which he often does in the morning... R and I head to the barn to clean, groom the animals, or (before all the snow) for R to take Stormy for a quick ride. 

We eat an early lunch, followed by "quiet time" which is when both kids play quietly in their rooms (alone) for awhile. While the kids are in quiet time I catch up on phone calls or paperwork, and toss something in the crock pot for dinner.

Once quiet time is over (1:00 or so) it's school time. I do our regular academic subjects one on one with each of the kids. Right now we are using Learning Language Arts through Literature, and Making Math Meaningful (soon to be alternating with Saxon Math). We also use Evan-Mor Building Spelling Skills and Handwriting Without Tears (cursive). 

By the time we are done it's usually mid to late afternoon, which can also be a difficult time for M. If he's still doing well enough we might work together on our unit study for 30 minutes or so, if he isn't I save it for after dinner (or the next day!). 

We follow this schedule fairly consistently Monday through Thursday, although we do miss days here and there for appointments and things. 

On Friday the schedule changes... First they do whatever catch up work they might have left over from the week (usually not much, if anything... I think they need a light day on Friday), and take their spelling test. Then we all sit together and (usually) start with poems that I've found for each of them and printed out. The poems connect to the current season, weather, holidays, or our unit study. They illustrate the poem and add it in their "poem book" (a presentation folder). Then they write in their journals, and then get their allowance. 

People with FASD typically have LOTS of trouble handling money, so during allowance time we talk a lot about a few simple "rules" of wise spending, and making good choices with money. I reinforce these same rules of wise spending each week... handling money is a skill they'll need to have to live even semi-independently as adults. As soon as they get their allowance, they sort the money into envelopes... A spending envelope, a saving envelope, and a donating envelope. When they have $10. in the spending envelope we shop, when they have $20. in the spending envelope we go to the bank (they each have savings accounts), and when they have $20. in their donating envelopes they get to choose a charity to get their donation. 

After allowance is cooking time! (The kids favorite part of school!!) I pick an easy recipe, or even a mix of some kind, that doesn't have too many steps and they make it. They've made everything from brownies to Kraft Mac and Cheese... and the best part is eating it as soon as it's done! 

We do school year round, although we take a week off here and there when things just get too busy (or we all need a break!). We also take a lot of classes through the Plains Conservation Center on Saturday mornings (yes, it's M's worst time of the day... and he probably gets little or nothing from the classes, but R and I like them!) Through the PCC we've learned about edible wildflowers and other prairie plants, we've dissected owl pellets (and then came home and found our own owl pellets to dissect!), we learned how to make cheese, and next Saturday (if it doesn't snow again) the class is "Bone School" where we'll learn to identify different animal bones. (We have enough coyotes here that we find a lot of bones down in the gully... it will be nice to learn more about what we are finding). 

That's our schedule... Anybody else want to share? I love to hear how other homeschoolers structure their days!

Friday, January 5, 2007

I bet you can't guess...

.... what the weather is like at my house today. ~ It's SNOWING!

 

No, I'm not joking. 

Really... it is! Can you believe it?! 

Yeah... I know it's a little unusual for this time of year in Colorado, and I can't tell you how surprised I was when I woke up this morning to find that we are... once again... snowed in. :( Ok... I'm being sarcastic, which any of my grown daughters will tell you is the last refuge of the powerless... (family joke) and sarcasm isn't usually my style... but dang! I'm getting tired of all this snow!

 

We've got about another 10-12 inches this morning, on top of the 12-24 inches that hadn't melted from the last two storms. 

It is pretty though, and so peaceful... It's a muffled kind of quiet outside, and it's easy to feel as though we are the only people for miles around. The animals are holed up in the barn, but still stick their heads out of their stalls when they hear my voice... and the goats come out far enough to "talk" to me before darting back inside when I go back into the house. Stormy only sticks her head out far enough to see if I have any hay. She's not much of a talker... 

I've got dinner bubbling in the crockpot and made a cake for dessert, so the house smells wonderful... and one good thing about being snowed in is that there is plenty of time to keep the house picked up, and dinner on the table! (And it's cheap too... I can't spend money if I can't get to town. Although I did have some fun on ebay the other day!) 

We started back to a light school schedule on Tuesday, and it felt good to get back into a routine after the holidays. I pulled out some of the Saxon Math lessons that we had left over when we switched to Making Math Meaningful, just to see how much the kids remembered. I was happy to see that they remembered a lot, and (unfortunately for M and R) I remembered all the things I liked about Saxon Math. So..... I found some very good prices online for both new and used Saxon Math materials and ordered them. Since Saxon Math can be grueling (for all of us!) I think I'm going to alternate Making Math Meaningful with Saxon and see how it works. Hopefully that way none of us will get too burned out... 

I also pulled the Handwriting Without Tears cursive program back out and we've started it again. R is really doing well with it, but last time we tried it, M just didn't have the fine motor skills to do it. (It was very hard for him and he got frustrated very quickly.) This time though M is doing well with it... I'd almost given up on him being able to write in cursive, but maybe I was wrong. I love being wrong about things like this! 

We got some very good news in the mail the other day... M has been approved for developmental disability services! We did the intake about 6 weeks ago, and thankfully they didn't get too stuck on trying to pull apart how much of his disability is a result of mental illness, and how much is connected to his FASD. (They had originally told me that if his cognitive delays were connected primarily to mental illness, and not his FASD, he wouldn't qualify for dd services!) They still haven't made a determination about the CES waiver, which provides support for the most seriously disabled children and their families. There seems to be a good possibility of M qualifying for that too. The wait list for the CES waiver is much shorter than for regular dd services (15 months compared to 5 years!), and they would pay for a lot of in-home support for us. It would be such a blessing if he qualified for it... It wouldn't change M's illness, or the amount care he needs, but it would provide an extra set of hands which would lighten the load considerably.

Well... better go, the kids are waiting for me.

Tuesday, January 2, 2007

It looks like the snow has finally stopped, it feels so good to have the sun back out again. It's still very cold outside, but even 28 degrees feels balmy compared to the weather we've had lately! 

Our Christmas was nice, but a little crazy. Working around our grown kid's schedules, and Dh's family's plans, left us celebrating Christmas FOUR different times! (Which is three too many for me!) 

We celebrated on the 23rd with dd#3 who was heading to New Mexico to celebrate with her roommates family. We celebrated on the 24th with Dh's family, and on the 25th with M and R and dd's #1 and 2. Finally we celebrated on the 27th with the grandkids. I was sooooo tired of Christmas by the 28th that I took the tree down, and packed all the decorations away. It felt good to have it all put away and things looking back to normal again. 

M and R really struggled with the anticipation of the holiday... but both kids settled down on the 24th and seemed to enjoy their Christmas. We spent Christmas Day quietly at home, which was wonderful and peaceful... and probably my most favorite way to spend a holiday. 

We spent New Year's Eve with Dh's family... He is one of 12 siblings, all grown now and most of them married with kids of their own. When we all get together there are 30 or more of us, ranging from babies through Grandma and Grandpa who are close to 80. 

These big holiday get-togethers can be so difficult for M. There is just too much going on... too much noise, too many people, too much excitement. He did well though, he had one rough spot but just staying close to me for awhile (and a prn) seemed to help him pull back together again, and we made it through without any major problems. 

We haven't done any sit-down school (language arts, math, etc) for two weeks and I know it's time to get back into our routine... the longer we wait, the harder it is to get that routine back again. I'd like to start back today, but with the holiday it's a short week , and we have to go to town for a pdoc appointment today (which takes at least three hours!). Sigh... I'm not sure if we'll get much done or not. 

We finished our nativity unit study, and it was just ok. Between getting ready for Christmas and the first blizzard, we were so busy that it was hard to work steadily on it. It felt like we kept running out of time for it and letting it go for awhile, then picking it back up several days later. We finished the unit study by going to see the movie The Nativity Story. I thought it was a wonderful movie, and M did ok with it... Unfortunately, it was much too scary for R (who struggles with anxiety issues) and we had to leave before the movie was over. I would like to see the movie again, without the kids, I really enjoyed what I did see of it. 

As soon as I can I'll make a page and show you what we did for our study of the Christmas story . 

I'm glad no one minds all my snow pictures... (because I'll probably keep posting them anyway!) ********************************************************************** Note to Ron: as soon as the wind calmed down enough we had a lovely fire in the fireplace and the kids roasted marshmallows. Mmmm... nothing like gooey, brown, marshmallows right before bedtime! Note to Steph and Cheryl: Believe me... if I could send some of this snow your way I would. During the first blizzard the wind was blowing so hard I'm surprised it didn't make it all the way out to you guys!