Friday, June 27, 2008

Yesterday was a challenge, a day of ups and downs (or more accurately, downs and ups).  

 M's been pretty unstable for the past few days. He's going back and forth between the calm stability he (we) had been enjoying for the past couple of weeks, and the edgy, unpredictability that's been the norm since the beginning of the year. 

Yesterday morning he had a severe meltdown in the car... something that's pretty unusual these days. 

After going through many meltdowns in the car when he was younger, I've gotten very careful about not putting us in that situation. It's incredibly scary when he's out of control in the car, so I learned... If he's too edgy, we just don't leave the house. 

 But he seemed ok when we left the house. 

Unfortunately he fell apart within minutes. I should have turned around and gone back home, but R needed to get to day camp so I kept going... hoping he'd settled down quickly. 

 He didn't though, and the 30 minute ride was a nightmare... No one was hurt, no damage was done, and we got there safely, but I felt completely exhausted by the time we got to camp. 

He was still unsettled and disconnected for the rest of the morning but, thankfully, stayed calm after that initial meltdown. 

 By afternoon M was more himself again and got school done before going back to pick up R. 

It's weird how he can be so incredibly disconnected and out of control, and within just  a few hours be thinking well enough to get school done. He recovers from these episodes faster than I do... 

 R was so excited after camp. I real hula dancer had come to camp and taught the kids a dance! (As a big Lilo and Stitch fan, she loves Hawaiian music! :) After dinner she brought her CD player downstairs, turned her Lilo and Stitch CD on, and taught us all her hula dance. Even dh got up and danced! 

R was having so much fun teaching us something... at one point she asked dh, "Have you ever smiled so much it made your head hurt?" She was having a wonderful time... It was silly and fun and just what we needed after the morning's drama. 

 After dancing the kids and I went out to do the barn chores... but first M had to play with the donkeys. He's learned that they get very curious when he sits down in the pasture (probably wondering why anyone would want to sit in that mess!), and even Jack will come over and see him. It was good to see him connected again and enjoying life...

   

So... it was a day what went from REALLY bad, to pretty good. It's so nice when things balance out that way.

Thursday, June 26, 2008

a poem

A dear friend of mine gave me a book the other day. 

It's called Sabbath: Finding Rest, Renewal, and Delight in Our Busy Lives, and it's a wonderful book... I'm enjoying it very much. 

 I found this poem in the book and love it so much I wanted to post it here... 


 ~ Let Evening Come ~ 

Let the light of late afternoon shine through chinks in the barn, moving up the bales as the sun moves down. 
~ 
Let the cricket take up chafing as a woman takes up her needles and her yarn. Let evening come. 
~ 
Let dew collect on the hoe abandoned in long grass. Let the stars appear and the moon disclose her silver horn. 
~ 
Let the fox go back to it's sandy den. Let the wind die down. Let the shed go black inside. Let evening come.
~ 
To the bottle in the ditch, to the scoop in the oats, to the air in the lung let evening come. 
~ 
Let it come as it will, and don't be afraid. God does not leave us comfortless, so let evening come. 

~Jane Kenyon

Tuesday, June 24, 2008

Twelve days...

That's how long M's good spell lasted. 

If I'm remembering right this is one of the longest, calmest, spells he's had since the onset of his schizophrenia about 7 years ago. 

It was a very nice 12 days... he was more stable and connected than he's been in years. 

It's been hard to go back to the edginess, restlessness, volatility and unpredictability. Things are manageable, but it's still hard to make the shift backwards...  

Anyway, it's a busy week this week for us! R is in Girl Scout day camp all week, so M and I are on our own for most of the day. 

We got some running around done yesterday morning and spent the afternoon doing school. The deal is that he does school this week, and takes next week off to balance out R not doing any school this week... 

M's pretty excited about getting to just hang out next week while R has to do school! 

We've got things planned every day this week just to give us some structure... (M tends to not know what to do with himself when R's gone.) 

 The donkeys are settling in pretty well. Jenny has about the sweetest, most even disposition of any animal I've ever seen (except maybe our Golden, Emma... she's also pretty laid back). She is friendly, calm, and very easy going... 

 Jack, on the other hand, is very easily frightened, and it's taken 5 days of work just to get him to eat out of my hand, and let me lightly touch his face.

 

 He's also afraid of our goat Rose, which is kind of funny... He's so much bigger than she is, but all she needs to do is give him "the look" and take a step or two towards him and he takes off. It was hard getting him fed last night because he was afraid to walk past Rose to get to the hay! 

 After thinking about it, we've decided to sell the goats... We don't need this many animals (lol, we don't need ANY animals!), and hay is expensive, so I'm going to start looking for a new home for my "girls". It will be hard, because they are both wonderful, gentle, goats.... but we just can't keep adding animals without getting rid of some. 

 Most of our animals are either rescue animals or animals with special needs... Part of the reason for that is finances, we just can't afford to spend hundred (or thousands) of dollars on pets and livestock. But the other reason is because I tend to have a soft spot for the underdog, for the "fixer-uppers"... It breaks my heart to see animals that haven't been well cared for, and need someone to love them and given them consistent care. I love watching them becoming glossy with health and strong again. 

 I thought it might be fun to post some before and after pictures of a few of our animals... 

 Blaze before-

 

 ...and now.

 

 Rose before (with Betty as a baby)-

 

 I didn't realize it until I compared these pictures, but Rose is showing her age... 

Look at all the white in her coat compared to two years ago!

 

 Grant... He doesn't look that thin in this picture, but he was pretty skinny when we got him. The dark spots on his chest are places where his hair was gone. He was also lame when this picture was taken, it took six months (three vet visits, four farrier visits, and corrective shoeing) to "fix" the problem, but he was eventually pain free and sound...

 

 Here's his "after" shot... He was such a great horse, we still miss him.

 

 Jenny is also a "fixer-upper". She is very thin and has some lameness. Her hooves look  very different that Jack's, and are overgrown. At times she walks as though she's in pain. The vet has me giving her an anti-inflammatory and standing her in deep mud for several hours each day.

 

 Needless to say my pasture is a mess... I've been living in mud boots for days!

 

So here's Jenny's "before" picture... a sad, skinny, little donkey standing in the mud.

 

 Give me a few months and I'll post an "after"...

Friday, June 20, 2008

The danger of just a little bit of Shakespeare...

 

During this past school year I decided to introduce M and R to Shakespeare... 

I bought some abridged children's versions of some of his works which they read, and we also read several books about him. 

I thought they should know who he was, when and where he lived, and have at least a tiny bit of familiarity with his writings. 

 I'm not sure if this was a good idea or not. As we were driving to town today R asked me, "Is that Shakespeare, Mom?". 

 Not sure what she was talking about (her conversation tends to jump around a lot), I replied, "Is what Shakespeare?" 

 R, "Those words" 

 Me, trying not to sound impatient,"What words?" 

 R, looking at the rearview mirror, "Objects in the mirror are closer than they appear" 

 Me, "No sweety, that's not Shakespeare..."
I've been feeling like a complete slacker the past few days... 

 There are bills that need to be paid, the bathrooms are filthy, the gardens are weedy, and I haven't even started the first of the two unit studies I wanted to get done this summer. 

 Granted, the past few weeks have been busy ones... we've had a graduation (and big family party), planned a wedding, took a trip out of town, celebrated Father's Day (with another big family party) and celebrated dh's birthday. 

But still it's really time for me to pull it together and start getting caught up on things. 

 So... did I spend yesterday staying home getting caught up on things? 

 No. I added to the livestock (and my work) instead. 

 I got two donkeys, temporarily named Jack and Jenny. (A jack is a male donkey, a jenny is a female donkey, so the names aren't highly original but we're only using them until we think of better names.) 

 Jenny has the white face, Jack is behind her.  

 The donkeys were a gift from Al, the guy we got our goat, Rose, from. 

Al has a little farm just north of us and we were driving by the other day when we saw a few of his geese out. We turned around and kind of herded them back up the driveway (with the car), then decided it would be rude not to stop in and say hi. Al wanted to show the kids all his new animals. He raises llamas, miniature horses, goats, sheep, donkeys, chickens, geese, turkeys, peacocks, and probably other things I'm forgetting. 

We stayed for a long time, admiring all the new babies, and then M helped Al with the evening feed. As the animals came to feed, R noticed a very calm gray donkey standing waiting her chance to eat. R started petting her, and the little donkey just leaded into R, obviously loving the attention. R climbed into the pasture with the little jenny and within 10 minutes R was in love. 

 Al showed us the jenny's companion, a darker colored donkey gelding. The gelding (jack) was much more skittish, he was obviously not used to being around people. 

 As I watched R with the jenny I thought about my brother, Steve's donkeys, and asked Al how much donkeys cost. He said he'd give us the jack and jenny if we wanted them. He'd gotten them from some people who'd lost their farm, they'd given them to him and so he'd just give them to us. (He was also watching R with the little jenny) 

 So we picked them up yesterday.... They are very sweet, although Jenny is thin and not as perky as Jack. I'll worm them both today and probably have the vet out to take a look at them. (I wish my brother was here to check them over!) 

 Here they are... Jenny is on the right, Jack is on the left.

 

 Jack isn't at all sure about making friends... He's very sweet, but kind of dances around trying not to get too close.

 

This morning I stood out with them as they ate, and he'd come close to me to grab a bite of hay...

.

..then quickly move away.

 

 Jenny's very friendly though, and even let me check her teeth this morning... (Trying to figure out how old she is... unless donkey teeth are very different than horse teeth, she's not a senior citizen yet!)

 

 So anyway... that bathrooms are still dirty, the bills still need to be paid, and the garden is still weedy, but we're having all kinds of fun with our new Jack and Jenny.

Tuesday, June 17, 2008

decision making time...

Thanks for the prayers for my friend Christiana, I haven't heard any more about how she's doing... I'm hoping the experimental treatments they are starting will be effective enough to reschedule the bone marrow transplant. 

 The struggle she's been facing for the past six months really puts things into perspective for me... It's hard to fuss and whine about the normal frustrations and stress of life when some you know and care about is fighting so hard just to hold onto life itself... 

 She is truly a remarkable woman... She walked me through those first few months of M's illness, I don't know what I would have done without her. She's funny, bold, brave, wise, open, accepting, loving and kind. I hope she doesn't leave us too quickly... the world needs more people like her. 

 Loren-I don't think you would have met her. She was involved with the FASD support group for awhile, but I don't remember her coming to the house when you were there. 

So, I still need to post more wedding/Las Vegas pictures... and I will... but not right now. 

Warning: This post is about the same old day treatment/inpatient what-to-do stuff I've written about countless times before. If you're tired of hearing me talking myself into and out of things, and rationalizing (or maybe not) the decisions I'm trying to make for M, this is likely to put you to sleep. Sorry. Come back in a day or two and I'll have more wedding pictures posted.

I got a call yesterday from the day treatment program that M's been on the waitlist for. 

 They have a spot for him. 

 I kind of wish they didn't... 

 The only two reasons I put him on the waitlist were 1. to get the pdoc off my back about it and 2. because we needed to get him off the haldol and it appeared there was no way I could do that at home. 

 But since then I've decreased the haldol by almost 75% and am hoping to stop it in the next few weeks. So that is no longer an issue... 

 And he's doing really well right now. The past week he's been calm, connected, happy, it's been wonderful. So there really isn't a crisis going on (at least right now)... and the unit is supposed to be for kids and families "in crisis". 

 I talked to the head of the unit today and wasn't impressed. The last time I talked to her was about 8-9 years ago. She was running a social skills group then and she met with us before deciding whether or not to accept M into the group. After meeting him she decided that he wouldn't be a good fit for her program and that was that. I wasn't hugely impressed at her at that time, but it was a short appointment and we really didn't have much chance to talk. 

 After talking to her today I'm very concerned about a couple of issues. The first involves her answer to me when I asked how they would adapt their program (they use a program designed for kids with Autism Spectrum Disorders, it's called TEACCH, which stands for Treatment and Education of Autistic and Related Communication Handicapped Children) for M, who isn't autistic (or communication handicapped), but is developmentally disabled by FASD. She answered that the program works with "all kids with special needs". 

 How can that be? Behavioral interventions for kids with FASD look VERY different from interventions for kids with Autism. 

 Hmm.... a small red flag started waving in my brain. 

 Then she asked if M was in a "program" this summer (assuming he was a public school student). I explained that we homeschool, and school year round, although with a lighter schedule during the summer. She replied "Why did you take him out of school?", in a challenging way... not a curious one. 

 Unfortunately, I stumbled around a bit as I answered her... I was totally unprepared to feel challenged in that way about homeschooling (at least during this first, brief, phone call!). 

 That's about the time another larger red flag started flapping around wildly in my brain... 

 I really, really don't want to end up in the position of having to defend our educational choices to a bunch of tdocs who don't know us, and deal with the pressure of them believing M needs a "program"... that homeschool isn't enough for him. That would be really hard on me... 

 Sigh... what to do. 

 One good thing that came from the conversation though, is that I'm understanding why all of a sudden the pdoc has started hammering away at me that M needs a "program". Lately, every time things get rough her only answer is that he needs a "program". In the 6+ years she's been his pdoc I never once heard anything from her about his need for a program until about a month ago. During the past month she's mentioned it at least 4-5 times. She's brought it up so often that I got snappy with her about it... I was tired of her answer to everything always being a "program" and let her know that. (She apologized, but has continued to keep bringing it up.) 

 Honestly though, the homeschool issue could possibly be taken care of fairly easily... hopefully just by clearly stating, up front, that we are NOT interested in finding a program, that we believe homeschooling is the best option for our children, and if that is a problem for them they don't have to admit M. 

 And M is probably flexible enough right now to cope with a structure (the TEACCH model) that isn't the best fit for him. It does seem a little strange though that he (coming in as the child in need of this level of support!) would need to accomodate them, rather than things being the other way around... 

 The bottom line for me though, is that I don't think this is going to be helpful to M. I talked to K about it. Her shiny new psych degree, combined with her experience working with kids with mental illness, developmental delays, and behavioral problems, gives her a unique insight sometimes. She is strongly against M going into the NSCU. She sees the issue not of him having behavioral problems, but having a very serious mental illness that has been resistant to treatment. I agree with her take on the situation, which brings me back to this being a medication issue, not an issue that requires behavioral intervention. 

 I found the following paragraph while I was reading through an article this morning... It looks like treatment resistant sz is more common than I thought.

"The issue of treatment resistance [Treatment Resistant Schizophrenia] is of particular importance for practicing psychiatrists, because 10% to 30% of patients have little or no response to antipsychotic medications, and up to an additional 30% of patients have only partial responses to treatment." 

 Hmm... so why do we keep coming back to this as a behavioral or environmental issue? 

 Anyway, the NSCU intake person is working on finding out if our insurance will even pay for day treatment, and we have a tour scheduled for tomorrow afternoon. 

The pdoc is gone (a family emergency came up) but I'm hoping to talk to her before I have to make a decision.

Monday, June 16, 2008

update

I just got off the phone with the pdoc and given how well M is doing right now she doesn't want to admit him into the day treatment program after all. 

We're going to move him back down to the bottom of the waitlist instead. 

If he's still doing well when he reaches the top again (probably towards Fall) we'll take him off the list... If he goes the other way between now and then, we'll admit him. 

 Sounds like a reasonable plan, doesn't it? 

I love it when things work out so easily! 

 Thank you all for the wonderful insights and advice. I'm so blessed that you read my blog and took the time to offer suggestions and advice. Because we aren't involved in a "program" (LOL) I don't have much outside feedback coming in... that's one of the definite disadvantages to caring for M at home. So I always really appreciate other's ideas and input when things like this come up. 

 Susan, I did get the article... thank you. (I tried to reply to your comment to thank you, but my reply must not have gone through...) I thought the treatment in the article sounded very promising, and I was going to send the link on to the pdoc... but then I read more about it and there is a possibility that the treatment (I can't remember the name of it off the top of my head) would cause activation... an increase in his mood symptoms. Unfortunately, M is extremely sensitive in that way... many meds trigger mood problems in him (even things you wouldn't expect to!). So I decided it was probably safer not to pursue it... Thanks though, I uappreciate you thinking of us. 

 M had another good day today, by the way.... This is eight (8!) days in a row (not that I'm counting or anything). He seems a little jazzed tonight, I hope his mood stays steady... He's really a joy to be around when he's this stable.

Sunday, June 15, 2008

A friend of mine is fighting for her life right now, she needs your prayers... 

 She is a truly remarkable, powerhouse of a woman.  She almost single-handedly put together the Empower Colorado organization... a group that is still going strong today, offering support, education, and encouragement to all parents of children with brain disorders. 

 She kept this group going and growing through the early years even while she was working full time and caring for her own son with a brain disorder. 

 She has supported countless parents, including myself, as we try to find our way through the maze of diagnostic and treatment services for our mentally ill children. 

She has held our hands and cried with us through the pain of watching our children struggle with mental illness...  

I am so blessed to know her... 

 She was diagnosed with leukemia last December and almost died in January... (Her care page is here, if you'd like to read about her ordeal) She miraculously survived though, her leukemia went into remission and she was able to go home from the hospital to be with her husband and kids. 

They found a bone marrow donor and she was scheduled for a bone marrow transplant the end of this month. 

 Then the leukemia came back... I got this email from her parents this morning: We need a huge prayer chain so I am asking you all to share this in church today or by yourself. Christiana's cancer has come back. The doctor told her, no more chemo, that it is not working. He is going to try some experimental drugs on her starting Monday. This is at the end of her life so I am asking you all to pray for a miracle. How does one say good bye to their child? Bob and I feel so empty, how do we go on without our child? Help us to ask God for another miracle. 

 Please keep Christiana and her family in your prayers...  

Friday, June 13, 2008

We're back...

... from the wedding, and I've got LOTS of pictures to share. 

 The wedding was wonderful... E (dd#1) did an incredible job of planning it. It was beautiful, tastefully done, and went off without a hitch. I told her she needs to think about a career as a wedding or event planner. Everything... from our check-in at the hotel to the brunch we all shared before they left on their honeymoon... was flawless. 

 We got in late Monday night and our room was amazing... It was a "panorama suite" on the 34th floor of Planet Hollywood, it was huge (approximately the same size as our first house)  having two bedrooms, three bathrooms, a kitchen area, and three sitting areas... and (the best part!) it had a 180 view of the Las Vegas skyline.

 

 This was M's favorite spot to relax and watch TV...

 

 We had a great view of the dancing waters at the Bellagio Casino. Every 30 minutes or so during the evening there is a series of fountains and water jets that come up from the pool, all set to music. 

It's a pretty amazing show...

 

 Tuesday morning the kids and I wandered down the strip looking for breakfast. I decided that we'd go hungry before we spent $16. each for room service breakfasts so we started walking... 

Luckily we found a Mc D's just a few blocks away. (Wandering down the strip with the kids was a whole different experience... talk about culture shock!   

 We spent the rest of the day getting ready for the wedding... We made a quick trip to rent suits for dh and M (and met the most wonderful cab driver in the process... we ended up taking him out for lunch.... it was an interesting afternoon!) and then headed back to the hotel. 

 After we all got dressed, R and I headed down to E's room where she and the kids, and her bridesmaids were all getting ready for the wedding...

 

 K (dd#3) and R..

.  

 My girls and I, ready to head downstairs for the wedding...

 

 We met up with the boys downstairs and went into the chapel for the wedding. M and B (dd#2)

 

 M was my escort down the aisle and R was guest book attendant (here she is pretending to be frightened of us as we came to sign the guest book!)

 

 The wedding was beautiful and very traditional... By the time the clergyman who did the wedding started reading 1st Corinthians 13 there was not a dry eye in the chapel. 

 My grandaughter was flower girl (and my older grandson was ring bearer). After the wedding my grandaughter decided the place looked messy and carefully picked up all the flower petals she had tossed while walking down the aisle...

 

 Here's the wedding party right after the wedding...

 

 Are you tired of pictures yet? 

I hope not because I've got more! 

 Here's a picture of E and S, her matron of honor (and best friend since 2nd grade). It was almost strange to see these two beautiful women standing there when it seems like just yesterday that they were little girls... stepdancing and going to Girl Scout camp together, and I was yelling at them for giggling all night during sleep overs... 

 Aren't they lovely? 

 

 E and her attendants - clockwise from top left: S, our daughters B and K, and "St" (E's sister in law)

 

 Dh and E....

 

 The reception was wonderful... They had a sit down dinner (Mmm... filet mignon!) followed by dancing. 

 M loves to dance. He danced with his sisters and virtually every other woman at the wedding, some several times! (here he is dancing with B)

 

 .... and he danced by himself. He was in heaven!

 

 E and J and the kids (and one extra niece) dancing...

 

 That's all for now, I'll have to finish this post tomorrow...

Friday, June 6, 2008

I haven't had time to blog, there's been just too much going on here... 

 Some families spread their events.... graduations, weddings, etc... out over a period of years. 

 But in our family we save time and just do everything at once! 

 K's (dd#3) graduation party was last Saturday and it was a wonderful party... We had mostly just family over, but Dh's family is so big that the house was full to overflowing! 

 After lots of congratulations, conversation, and eating (way too much), we all ended up outside for some wild and mostly rule-less volleyball.... Players routinely switched teams, we were seldom sure whose serve it was so whoever had the ball just served it, we implemented the "once bounce rule" since so few of us could hit the ball before it bounced (at times the game looked more like four square then volleyball!), and we had to be very careful not to hit the hall too hard because just a few feet past the out of bounds line was the steep slope down into the dry lake bed. (This was not a problem for me however, since I would had to have actually hit the ball before risking hitting it down the hill... There are benefits to being hopeless at any activity requiring eye/hand coordination!) Several times the game had to stop while someone scrambled down the hill to get the ball. It was a wild game, but fun... and we were all worn out afterwards.  

So... that was Saturday. 

 On Sunday, Dh went down to our oldest daughter's house to babysit so she and J (fiance) could go out for dinner. While they were gone, she called here... asking what I was doing this weekend. I told her I was busy and that's when she sprung the news that she and J had decided to get married sooner rather than later. 

Sooner... as in next week! 

 Oh, and they aren't going to get married here in Colorado... they're going to  Las Vegas... could we come too? 

 Needless to say we said yes... only later thinking about the logistics of getting us all there. 

 The past week has been a blur... See, E's not planning a typical quick Las Vegas wedding...  She's planning a traditional wedding, with all the bells and whistles, and she's putting it all together in one week! 

 I've booked our flight, found someone to housesit and take care of the animals, gone with E to shop for her dress, and shopped for wedding clothes for M and R. 

 It doesn't sound like much, I know... but while I was doing those things I was also patching up Blaze (who evidently got tangled up in a cattle panel I had stored behind the barn, and ended up with cuts on three legs and his chest!), nursing a sick dog, having an intake done with our county mental health organization for M, and then taking him for a second opinion consult appointment with one of their pdocs. Today I'm driving 90 miles north to help K, (dd#3) move into a new apartment... 

 It's been a wild week. 

 Adding to the excitement... the decrease in haldol seems to have finally caught up with M. (Or probably more accurately, the decrease combined with the loss of structure and added excitement of getting ready for the wedding has caught up with him.) He's destabilized... making everything we are doing so much harder. He's not handling car drives at all well, and is having almost daily meltdowns... during some of them he's disconnecting and becoming paranoid. 

 I'm not sure just how I'm going to get M through this trip to Las Vegas (probably lots of prayer and medication!), but it's going to happen... 

 So anyway... things are incredibly busy here right now but it's mostly a good kind of busy, it's so amazing to be celebrating these milestones with our "big girls". 

Here's the happy couple...

 

 And their three beautiful children...