Woodstone Prairie

As the days get colder and shorter, I find myself cocooning a bit… appreciating home, and wanting to just snuggle in and hibernate a bit.

Shorter days also mean doing the morning and evening barn work in the dark and semi-dark.

Some nights the sun is just going down when I head out…

But many evenings it’s full dark by the time my last trip to the barn is finished. There is a full moon tonight, and walking back from the barn the house looked like this:

I love the way the house looks in the moonlight and the warmth of the light shining out through the windows.

I’m such a homebody, I even love the carelessly tossed mud boots, and the newly picked pumpkins, decorating my front porch.

Quin, my little barn buddy has already let himself into the house, but always waits for me at the door…

Hmmm… the way I’m feeling now, I might just hibernate all winter!

I finally have a few minutes to post some pictures of the kid’s Election Day lapbooks. I think they turned out well, and the kids definitely learned a lot from the unit study.

 It’s been a busy week. K, the youngest of our birth children turned 21 (yikes!) so we drove up to see her on Friday, then R stayed the night and K brought her home Saturday afternoon. We had the big family celebration on Saturday evening. This is such a milestone for K, and I’m so proud of the person she’s grown into… She just graduated this past May with a degree in Psychology, and works full-time at Crossroads Safehouse (for victims of domestic abuse). She is so excited and committed to the work she’s doing… and she seems happy… so life is good for her.

R was over-the-top excited about spending the night with K, but she was also seriously stressed out by M and I leaving her in a strange town, 90 miles away from home. For the first couple of hours we were gone, she called me about every 15 minutes. She did eventually relax a little and the girls had their nails done, went out for dinner, and ended up eating ice cream while watching movies. All in all I think they had a wonderful time, and by the time Saturday came, R wasn’t sure she wanted to come home after all!

 M is, unfortunately, really struggling right now. We’re still adjusting meds (the endless medication adjustments… do they EVER end?!) and he’s more symptomatic than usual. It was hard getting him through the birthday dinner on Saturday, but yesterday was a better day for him.

I’m supposed to talk to the pdoc tomorrow night… During the past really difficult month with M, she’s been mostly absent from things. She’s emailed a couple of times, but, for the most part, she’s been too busy… for a long time… to be very involved. The good news is I’ve gotten used to being on my own… not counting on her for help or support. The bad news is that when she has a minute to be more involved, like now, it’s hard to let her. I don’t trust her to stick around for more than a day or two before getting impossibly busy again, and I’m the one who has to live with the outcome from whatever med changes she suggests (not her!) so it’s hard to blindly follow her suggestions the way I used to.  

Sigh… I really don’t want to talk to her, she always asks a lot of questions, then either makes recommendations of things we’ve already done, or comes up with ideas of things we haven’t tried, but says she has to research them before we do anything. But she never seems to research them and doesn’t mention them again for months (if at all).

Can you tell I’m feeling a little cranky about the whole thing?

 Anyway… here are the pictures of the lapbooks.

This is the project pack book I used to plan and put together the unit study and lapbooks:

Here’s one of the lapbooks…

I’m happy with how they turned out. I think our next unit study will be something totally different… probably rocks and minerals.

Last night we had our first frost of the year…

No, I don’t have any pictures of everything coated with frost. While it was still frosty outside, it was too cold to go outside and take pictures and once it warmed up…..well… the frost was gone.

My brain is tired… I’m talking stupid… maybe if I post lots of pictures no one will notice.

The kids and I took a walk the other day through the prettiest little park not far from us… It has a long winding trail running through it, so the kids decided to take their scooters and follow the trail.

The colors of the leaves were just beautiful, my camera doesn’t come close to doing them justice.

A row of cottonwoods along the creek…

We stopped to read the historical marker…

(Does that count for studying history that day?)

Seriously though, we just finished an awesome unit study/lapbook about the election. The kids are now very interested in the election, and I learned a few things I never knew before.  I’ll have to post some pictures of their lapbooks… they are amazing… the kids did so much work! (The highlight of the unit study was rockin’ out in the kitchen to the Schoolhouse Rock Preamble to the Constitution song. M plays a mean air guitar, and R and I both have the preamble memorized now!)

I’m still working with Tucker a little each day.

Remember when he wouldn’t let anyone touch him?

He really did turn for me here… It’s an exercise the trainer has me do, it’s supposed to teach Tucker to pay attention to me. He’s also picking up ALL FOUR hooves for me! (a major breakthrough… he picks them up with no kicking!) Of the three animals, Tilly, Blaze and Tucker… Tucker is now the best about picking up his hooves.

I’ve also been doing some winterizing around the house, getting ready for the snow and cold.

I bought a huge roll of bubble wrap on craigslist and have cut pieces to fit the sunroom and basement windows to help cut down on all the heat we lose through those windows.

It looks a little funny, but if it helps keep the room warmer this winter, it’s worth it. I’m going to try and make some kind of a warm window type shade for the patio doors in this room too… anything to keep it a little warmer.

So fall is here and winter is fast approaching… My big garden froze last night, and it won’t be long before the first snow. This is my favorite time of year…

Yesterday was a good day… Not only did M have a calm, settled day, I (we) had the opportunity to get some expert feedback about his meds, and do some educating about homeschooling at the same time.

I was happy dancing by evening…

Here’s why… It starts back 5-6 years ago, when M had been diagnosed with sz for a couple of years and wasn’t responding to treatment, so his pdoc (the same one we have now) sent us to Dr D, another child psychiatrist, for a second opinion consult. Dr D was (is) supposed to be just brilliant, especially with meds. At the time he saw us, M was not doing nearly as well as he is now… He had stalled out cognitively (connected to the psychosis) and was still losing skills as the illness took over. It had been a couple of months since he’d been well enough to do school, and he complained to Dr D of having “no friends” (which wasn’t entirely true… but, because of his instability then, he didn’t have the friends he does now. He was having frequent meltdowns and was pretty unpredictable… It was not a good time in our lives.

Dr D wrote up a report after the appointment, giving a whole laundry list of diagnoses (at the time I felt like he’d probably just gone through the DSM-IV and diagnosed M with everything that might possibly even be close to fitting). and he also suggested ECT. I was shocked by that suggestion… It made me mad, I couldn’t imagine how he could suggest a treatment so risky for a child! I was steamed.

 A year or so later, I finally let M’s pdoc talk me into having him admitted into the CPU (child psych unit). I’d been refusing for months to do it, but my mom had recently passed away, my brother.. who’d been staying with us and helping with M… had flown away home to Ireland, and things were just piling up. So when the pdoc said let’s try inpatient, I said yes… but I wanted Dr D to be M’s attending. I knew Dr D was the best pdoc there (he was head of the unit at that time, I believe) and even though we didn’t agree on some things, I wanted M to have the best.

So… M was admitted and it quickly became apparent to me that the quality of care (from the support staff, not Dr D), wasn’t what I would have liked.  Without going into specifics, things happened that made me decide that I didn’t want M inpatient after all. Since M’s admission was voluntary (I’d checked him in, no 72 hour hold) I decided to just check him back out again.

So I went to the CPU with that goal. I don’t think that must happen very often, because they didn’t seem to know what to do with my request. I was nice, but said I’d decided to take M home and could they please get the paperwork ready. They said I’d have to talk to Dr D, and paged him. He came down to the unit and spent a fair amount of time trying to talk me out of taking M home. He told me that M was “starved for social interaction” and needed to be in school. He also said that if I took M home he would only get worse and end up spending more time in the hospital later. Eventually though he gave up trying to talk me out of it, and let me take M home.

And we haven’t seen him since…

 …until last night.

I called him on Tuesday and asked him to do a second opinion consult with M. He remembered M, and very generously said yes, even making an appointment for us the very next day (yesterday) .

I was a little apprehensive. I remembered how hard he pushed for me to let M stay inpatient, how much he disagreed with what I was doing, and how damaging he thought homeschooling was. But I really wanted his feedback on the meds, and there was no other way to get it. So we went…

M was wonderful and charming during the appointment, and Dr D mentioned several times how well he’s doing… how much better then he was doing the last time he saw him. (Hmmm… better without any inpatient stays, is that right? )

I made sure he took plenty of time to talk to M, so he could really see what a great young man he’s growing into. M told him all about his friends, the book he’s writing, and the books he’s reading. He told him about the sports he’s done through Special Olympics, and they even talked a little bit about the election. And during their conversation, I made very sure that Dr D knew we are still homeschooling…

By the end of the appointment not only had Dr D given us some excellent feedback about the meds, and agreed to continue consulting with us, but he also continued to go on about how well M is doing, and I felt fantastic that he was able to see for himself how M is turning out without the “benefit” of traditional school, or the psych unit.

It was a very good evening…

I’ve been blogging for more than three years now…. My sister got me started and my first blog was on xanga. After bouncing around a little I ended up here on homeschool journal and it’s been a good fit.

 Recently, though, I gave a lot of thought to closing this blog. As I tried to decide what to do, I thought about why I blog…

I blog for fun, to keep a record of our days, photos of the kids and the things we are doing. It seems like a nice way to “hold onto” those things.

I blog to keep up with my sibs, and other family, who are far away…

I also blog for therapy, the act of putting the words together to write (or type) what is going on in our lives, especially during the difficult times, is helpful to me. Sometimes it helps me get a different perspective on things, sometimes it helps just to vent..

And finally I blog because I believe that what we are doing (homeschooling a child with serious mental illness) is unusual. In my dealings with the mental health care system, I’ve been given a clear message that ” it can’t be done”… that kids like M can’t possibly be homeschooled, and are best served by day treatment, inpatient stays, and sometimes even residential treatment.

I write about our days as proof that there is another way…

That’s not to say that traditional mental health care is bad, it’s just not a good fit for M.

I believe in what we are doing, and the “proof is in the pudding”, so to speak… At 16, M is a polite, caring (as much as the limits of his social understanding allows him to be), young man. He doesn’t drink, smoke, or use drugs… and never has. He has friends, a place in a community, is openly affectionate towards friends and family, and takes real pleasure in life and learning.

I write to show that despite the terrible crises that sometimes rumble through, and despite the much more frequent little bumps in the road of this journey that is our lives, a family can homeschool a child with a serious mental illness and have it be a good, positive experience for all involved.

We have been blessed by our youngest children… blessed by their presence in our lives, and by the opportunity to watch them learn and grown.. day by day. That’s an opportunity homeschooling has given us.

If you’ve read my blog, you know it hasn’t been easy at times. Living with someone with schizophrenia is never easy. (And this is true whether the person is involved with traditional mental health care systems or not!) It’s a serious illness… and sometimes the symptoms are difficult to deal with.  Loving a person with sz involves making a commitment, a commitment to be there for that person… even (especially!) when things are hard. It means walking that hard road with the person because you love them, and because it’s the right thing to do. No, it’s not easy… but often the most worthwhile, growth producing, faith building, things aren’t.

Unfortunately, as my sister reminded me just yesterday, people react differently to a family dealing with a child’s chronic, serious, mental illness, versus a chronic, serious, physical one. Many people are still afraid of mental illness… It’s my hope that those who read my blog will come to see that M, and people like him, are so much more than just their illness.

So, I’ve decided to keep blogging, writing about our lives… If you strongly disagree with what we are doing, or it makes you feel uncomfortable, I’m sorry. The truth is that life is messy sometimes… but isn’t that what makes it life?

… things are still just a little weird here right now.

It’s taking M some time to pull back together from the disconnect he had about 10 days ago. I wonder if he’s starting to react in more of an adult way to these episodes… When he was little, he would bounce back by the next day. But it took a full week after this last episode before it started to feel like M was on his way ”back”, and he’d begun to act like himself most of the time.

 Steph, did you ever work with adults with sz? Is that extended time to get over an acute episode common in adults?

Anyway, I haven’t had much time at the computer so I haven’t posted…

 I’ll be back when things settle down a bit more.

The past few days have been weird… A major episode like M went through on Thursday always really rocks my boat. I’ve been feeling a little panicky, and after being more involved again for the past few weeks, the pdoc has dropped out of sight again… which adds to my unsettled feeling.

I think the panic comes from realizing how close we often come to disaster… Maybe I feel some survivor’s guilt too, that each time this happens M pulls back together and life goes on, and we haven’t had to go through the hell that many other families of kids with serious mental illness go through.

It is scary sometimes though… Sometimes I feel as though I’m staring his illness down., standing up to it, trying to push it around, while at the same time knowing it’s more powerful then I am.

If I’m going to keep up this charade though, I can’t waver, or give in to the fear… I can’t blink… I need to keep focused on doing what we’ve been doing for years, what seems to be working for M.

So Friday we got up and went on the field trip I’d scheduled before Thursday’s episode. M was still a bit disconnected, but he managed. And as the day went on he seemed to be more and more “himself” again.

We visited an animal rescue facility just a few miles away.

R loved being there and wants to volunteer some time with them. I think it’s a good idea… The director of the rescue went on and on about how capable she is, and so good with the animals… I think I’ll look into her volunteering there on a regular basis.

Yesterday we had Special Olympics bowling, and M did ok… so we finished up the morning of bowling with lunch out.

Can you guess where we ate?

I’ve added the haldol back to M’s daily meds… It’s very hard to give it to him again, even at a low dose, after working for almost a year to taper and stop it. But the sz was throwing it’s weight around last week, and I can’t let that keep happening. Hopefully the low dose haldol will help enough for M to get by.

Thanks for all the good thoughts and prayers, they mean a lot to us and I know they help…

Remember this post?

It’s the roller coaster one…

 I feel like that today. It’s been an extremely long, difficult day.

I’m ready to take a break from the schizophrenia roller coaster… all the twists and turns are making me sick to my stomach.

Today started out ok… M had a decent morning, and a friend from the homeschool group stopped by with her kids to bring me some canning jars she no longer needed. I could tell that M was struggling while they were here, but he kept it together… only getting a little edgy once or twice.

It was after quiet time that all hell broke loose…

It was a nightmare of an afternoon, one of those days when… by anybody’s standards… the kid should have been in the ER.

But I didn’t take him (haha… as if I could have loaded him in the car and driven him 40 minutes on a highway!) or call for an ambulance. I was busy cleaning up the broken glass, and by the time I was done he was calm again and had reconnected.

Yeah, he broke a window… with his hand. But in a strange way I don’t blame him. We took away one of his medications… a drug that, despite the nasty side effects, was really helping him.  And we gave him nothing to replace it. How fair is that? (How stupid is that?!) His symptoms have increased, and yet (for the most part) he’s been managing to keep himself together. Everyone has a limit though, and he reached his today…

I emailed the pdoc this evening and told her I’d be adding back in the haldol on an as needed basis. Yes, it’s causing the tardive dyskinesia… but there is nothing I can do about that. And it’s not right to sacrifice M’s today for a tomorrow that’s uncertain at best. A tomorrow that… if he continues to be as symptomatic as he was today… may never come.

Schizophrenia is a mental illness, which doesn’t directly (as far as I know) effect physical health much at all.

But it can still kill… and frequently does.

Keeping M connected is also keeping M safe from the symptoms of his illness… and that seems more important right now than a wiggly tongue.

Gosh I’m tired. I feel like I’m just rambling…

God was watching out for M today. Despite breaking a huge pane of glass with his bare hand he wasn’t hurt… Just a couple of little scratches, he didn’t even need a band-aid. It did take almost 5 hours to clean up the mess, but it’s all done now and my boy’s in bed and maybe even asleep.

I’m so glad today is over…

It’s been a long, complicated week or so. I’ve sat down several times to post something here, and each time I write a little something, then get called away to do something else, and just never seem to get back to the post I started.

I’m really going to work on finishing this post though…

My birthday was nice. K, (dd#3) spent the weekend with us, and we went out for my birthday dinner on Sat. night. Unfortunately B (dd#2) couldn’t make it, but except for missing her, it was a nice dinner and wonderful birthday.

 The animals were all fine after their grain eating/running around the neighborhood escapades… The vet eventually got here, checked them over and gave Tilly and Blaze medication to help through the shock (of all that grain) to their digestive system.  We watched them closely for a day or so, but Tucker was the only one who seemed “off”, and he was back to normal by the second day.

I’ve been keeping very busy with the kids… M isn’t doing as well as he was, I’m afraid. Around the end of August, I was finally able to completely stop the medication I’ve been tapering for months. He was ok for a week or so, but then seemed to destabilize, and things have been pretty dicey ever since.

Thankfully the pdoc has been a little more involved again lately, and I’ve talked to her a couple of times during the past week. That’s the good news…

The bad news is that she doesn’t seem to know what to do next. It’s not that she’s young or inexperienced… She’s one of the top child psychiatrists in the area, and tends to take on (and stabilize) the most complicated kids. She told me again last night that she’s never (in 30 years of practicing!) had a kid like M. It’s been sobering to realize that we’ve tapered this medication that was helping him, trying to stop the progression of the TD (which hasn’t gone away, by the way…), and now we have nothing to replace the med with, and no plan for how to get him back to a more stable place.

I guess it’s really no different a reality than we’ve been living with for months, but I’m tired (stayed up ’til all hours talking to the pdoc) and the combination of that conversation with not getting enough sleep, just makes things seem worse somehow…

So I’ve been carefully structuring each day to help M get through them as easily as possible… and it does seem to be helping, but it’s exhausting (and expensive!). On the weekend days especially, I’ve been making sure the whole day is structured (homeschooling is our structure for the weekdays)… with a mix of interesting activity, and time to unwind at home…but without much ”just hanging around” time.  

Last weekend we visited the Olympic Training Center in Colorado Springs… It was an awesome field trip, that place is just amazing, and it was the perfect way to end our unit study on the Olympics…

M, R (in the black ring) and S…

 The flame was lit during the time we were there because the Para-Olympic Games were going on.

 The artwork there was stunning… this was one of my favorite pieces. 

This past weekend we toured the Celestial Seasoning Tea Factory… no pictures, I’m afraid… but it was fun too.

So that’s what’s up at Woodstone Prairie… Hopefully today will be an easy day with M, and I’ll get some energy back. (And maybe even post semi-regularly for awhile!)

 Today is my brother’s birthday… I know he’d LOVE to have his xanga filled up with birthday wishes! So please head over here and wish him a happy birthday.

Just in case you missed the link, here it is again

http://www.xanga.com/U_Steve