Saturday, October 27, 2007

Special Day

Today was a special day for R... She made her First Communion. 

 Because of the difficulty we have getting to church regularly (because of M), we decided a home Mass would be best and she could make her First Communion then. We invited family and a few close friends (and filled the house!) It was a lovely, crazy day... 

 Here's R before everyone arrived...


 ... she took my breath away. 

 And this was taken during Mass. We pretty well filled the living room to overflowing! 

We used every chair we had, but it wasn't quite enough...  

 R and Father after Mass. He was so very good with her, he was careful to explain things in a way she could understand, and took the time (during their visits here over the past month or so) to let her read to him. I found her reading a cookbook to him today... (it takes a lot of patience to listen to a child reading a cookbook!)


 And where did I find her, after Mass... when everyone was looking for her to open the gifts they'd brought?

 Outside, in her mud boots, with Grant and the goats!

Friday, October 26, 2007

.... feel free to offer advice. 

 M is on a waitlist for the "CES Waiver", which is basically a program that provides support to the most severely disabled children. Many of the supports and services it pays for are not things we need (like adaptive technology, and home modifications), but being on the waitlist also means that as soon as M reaches 18 he is guaranteed at least a minimum of adult supported living services (whereas people not receiving CES just go on another waitlist). 

Having him in place to receive adult services is important to me and a main reason why I worked to get him qualified for CES. The organization (DP) that distrubutes state developmental disability funds (they also manage the CES waiver, and regular DD services) called me the other day to let me know that M was eligible for a new program... It's kind of a stepping stone from regular DD services (which he now receives) to CES. Through the program we can request a fairly substantial amount of money (I'd receive a check each month) to pay for allowed expenses having to do with M's disability. 

 It sounded great at first... they'll pay for respite, evaluations and assessments, maybe some educational materials, etc. The catch is that because it's a new program, it will be audited. So I HAVE to spend the full amount each month (I can't save it to pay for something big, or hold it over from a month when we don't have many expenses to a month when we do), I have to have receipts for everything, I have to have letters from doctors documenting the need for the things I spend the money on, and the money can only be used for M. 

I understand all the rules, but we haven't even started the program and things are already seeming way too complicated for me. Respite for example... I've called a couple of respite agencies and they are happy to come out and provide respite for M. One agency will cost a little more than we are given by DP (they charge $26. per hour).... and that's only for M. They will not watch R as well unless I pay another $26. per hour for her. That has to be paid out of pocket because we aren't allowed to use any of the DP money for R ... even though she qualifies for DD services... because she doesn't actually receive services, she's still on (yet another!) the waitlist. So I either take R with me and leave M at home (which doesn't sound much like respite to me!) or I can't afford to use the respite funds. 

 They will pay for educational materials only with a letter documenting the materials are needed because of M's developmental disability. So... I first have to make an appointment with an educational consultant, have her assess the situation, get her recommendations, then get a letter from her stating those recommendations... only then can I use any of the funds for school stuff. 

 It's starting to really stress me out. I don't want to find myself in the very strange position of feeling like I have to spend X amount of money quickly, before the end of the month, because of this program. I can guess there would be times when I'd be leaving the kids for an afternoon (oh, and I forgot... the respite has to be done in 4 hour blocks, nothing less) not because I had anywhere to go or anything to do, and when I'd really rather be home doing school or playing outside, just to spend the money. (And then I'd feel guilty for wasting state funds... money someone else could have REALLY used.) 

 So I'm thinking about turning the money down. Keeping things as they are... Every mental health professional I know would think I'd lost my mind (LOL, in a clinical sense of course!) The concensus seems to be that I NEED respite to continue to care for M at home. And granted, there are days when I'd give anything for a short break from the constant vigilance, the food obsessions, and the conversations that don't make sense... 

But it seems like this program, which is designed to help families, might end up being more stressful then having no respite. 

 sigh.... I don't know what to do. This whole situation is making me crazy. I'm interviewing a respite provider today, after that I think I'll put this on hold for a day or so... maybe taking a break from it for awhile will help me make a decision. 

Anybody have any advice or suggestions?

Wednesday, October 24, 2007

What next?

The pdoc emailed with the first of the results from all the blood work we did the other day...

I'm not a medical person, but I know enough to be worried about some of the results.

 M's blood sugar is borderline high (above normal, but just by a little), his triglycerides are high, and his cholesterol is borderline high. He's already taking omega-3, which should be helping to keep his trigylcerides down... but they are still high. We're still waiting on the results of the insulin level.

The little bit of reading I've done seems to connect all these things into the category of metabolic disorder (or syndrome). This is exactly what I was afraid of happening with the zyprexa (see my last post)...  I didn't realize it might have already started.

So M is having tardive dyskinesia from one class of meds, and metabolic changes from the other class of meds. There are no other classes of meds that treat schizophrenia...

I feel like I'm going to have to choose between TD and diabetes. That it will be impossible to avoid at least one (and possibly both) of them.

It makes me think of something Louise Erdrich wrote... (in addition to being an award winning author she is the ex-wife of Michael Dorris, who wrote "The Broken Cord", basically putting FAS on the map)

 "Some people lightning struck twice. Some people attracted accidents. Fate bunched up and gathered like a blanket. Some people were born on the smooth parts and some got folded into the pucker."

It's definitely feeling like M is folded into the pucker...

Tuesday, October 23, 2007

*I'm still looking for internship ideas, you can leave them here*


 Yesterday was a blue day... 

 I'd finally gotten the chance, on Sunday night, to talk to the pdoc about M. I'd been really looking forward to that talk, I had a bunch of questions for her about M's tardive dyskinesia and hoped to finalize a plan for what we could do to minimize or reverse it. I came away from the conversation with some questions answered... but very little hope for M's future. 

 She questions whether we will ever be able to replace the haldol with something else... and talked about the neurologists he's seen suggesting that she just continue to treat the schizophrenia (with haldol) and accept the TD as inevitable. 

When I asked if these brief episodes of paranoia signal a worsening of the schizophrenia, she said that we "already know that M has severe schizophrenia" and suggested that since his sz is already so severe, talking about certain symptoms being worse than others is a waste of time. If anything, she said, the episodes of paranoia simply point to more "diagnostic specificity", and at some point his dx might change to paranoid schizophrenia. 

That was tough to hear... And she didn't seem to understand why. She wants me to increase his zyprexa in the hopes that it might enable us to decrease, by a tiny bit, the haldol... The trouble is that zyprexa isn't particularly safe either. It carries a high risk of diabetes. 

I have a friend who also has a child with mental illness, taking meds very similar to M's... her son was recently diagnosed with diabetes and now, on top of the meds he takes for his bi-polar disorder, he also needs insulin shots. I don't want that for M. 

Last spring I discontinued R's only medication, feeling that leaving her OCD/anxiety symptoms untreated was preferable to the metabolic risks her medication carried (which are about the same as zyprexa's) From Wikipedia about Zyprexa (olanzapine): (This information matches what I've read in more clinical papers as well. The italics are mine...)

"Recently the FDA required the manufacturers of all atypical antipsychotics (including zyprexa) to include a warning about the risk of hyperglycemia and diabetes with atypical antipsychotics. These effects may be related to the drugs' ability to induce weight gain, although there are some reports of metabolic changes in the absence of weight gain, and recent (2007) evidence suggests that olanzapine may directly effect adipocyte function, promoting fat deposition. There are some case reports of olanzapine-induced diabetic ketoacidosis. There are data showing that olanzapine can decrease insulin sensitivity.[Impaired glucose metabolism, high triglycerides, and obesity have been shown to be constituents of the metabolic syndrome and may increase the risk of cardiovascular disease. "

The pdoc also wanted a bunch of blood work done... more than I can do at home. So we spent yesterday morning finding our favorite phlebotomist (who had changed jobs, so we had to track her down) so she could draw M's blood. She gave me more instruction while we were there so now I can draw, at home, for everything he's likely to need except one test. That will be good... 

 After that M had a stomach ultrasound done (for his probably-medication-related reflux). I'll get the results in a couple of weeks. 

 Yesterday wasn't a bad day... we got some school done, a friend came over to visit, I finished up a letter I've been needing to write, and even got the floor scrubbed! But there seemed to be a pall hanging over the day... 

 I woke up today not feeling quite so blue... regardless of diagnosis, or possible diagnosis, M is still the same person. He's still home and happy, with his own sweet personality. 

 We'll stay home today and get lots of school done... Maybe I'll bake some bread too, to go with the soup I'm making for dinner. Being home and focusing on everyday things should help put the pdoc's words into perspective and get me grounded again.

Sunday, October 21, 2007

*I'm still looking for ideas and feedback about my internship idea. You can go to the link at the top of this page to read about my idea and leave your thoughts and suggestions*

 ********************************************************************* First snow today... It's beautiful, of course. But the walk to the barn seemed a lot longer and colder than it did yesterday...


Yesterday was a super busy day... 

 In the morning we went to a Special Olympics sports festival in Castle Rock. The kids got to try a bunch of different sports (golf, soccer, snowshoeing, basketball, karate, bowling, and bocce ball) and were awarded a medal for trying each of the sports. 

They served us a nice lunch, and there was a nice "olympic village" full of information about resource, supports and services for people with developmental disabilities. 

We saw lots of friends there and the kids had a wonderful time! Here's a shot from the bleachers... The sports areas are around the perimeter of the room, the olympic village in the middle.


M golfing... (Can you see why this isn't the sport for him? He was scary with that club!)


 After the sports festival we came home for just a little while, then headed up to Casa Bonita for a birthday party. 

The kids had a WONDERFUL time (thanks Liese!), I hope J enjoyed his birthday!! 

We got home exhausted but happy, and even beat the storm by a couple of hours! 

Today is a stay-at-home, rest and regroup, drink lots of hot chocolate day. I might even start that new knitting pattern I've been meaning to try... Yesterday was fun, but I love days like today!

Friday, October 19, 2007

Oh, oh, oh!

.... I have the best idea!!! 

 Yes, things change quickly here... During the first part of the week my only goal was getting through the day without having M admitted... and now I'm making plans, for him, for the next couple of years. 

 I'll catch you up, share my idea, then I need some feedback... 

First the catch up... Evidently, haldol is crucial to M's stability. Each day this week (until yesterday) was a huge challenge... He would be fine for long periods of time and then virtually nothing at all would cause him to disconnect. He was getting more paranoid (refusing his meds, for the first time in his life, believing that I was trying to poison him) and I wasn't sure we'd make it through the week without admitting him. 

 Yesterday I decided to just increase the haldol back to where it had been before. 

I'm still very concerned about the TD... We are talking to the pdoc about options, and she's consulting with the pdoc in town who specializes in childhood schizophrenia. But trying to decrease the haldol just wasn't working... 

 As soon as I increased the haldol again, M settled down. He made it all the way through yesterday without any problems. It's so good to see him doing better again... 

 So here's my idea... "Internships" for M as a way to teach job skills, social skills, and maybe even find a "niche" for work he can do as an adult. I'll approach businesses in our town about M working for them. I would ask that he be required to fill out an application, but basically it would be volunteer work... they wouldn't have to pay him. He would need to comply with their dress code (uniform etc) and I would stay on site to act as his job coach. He would answer to the manager of whatever business he's working at, but I would one-on-one him, helping him to understand what's expected of him, keeping him on task, etc. I'm thinking about keeping each internship short, working at each business an hour or so every week or two for just three to four months, then rotating into another internship someplace else. Rotating like this should keep him engaged (the novelty of trying new things) and also give him the chance to try out different kinds of jobs, working for different kinds of people, learning different skills etc. 

I'm thinking about trying to put to arrange two 3-4 month internships a year, giving him some time off around the holidays and between "jobs". (If this works, the length of the internships would increase as he gets older.) 

We'd keep our volunteer job at the library as well... I need help thinking about businesses I can approach about this... I'm going to ask the manager of our Chick-Fil-A (he's a very nice guy, who already knows M), thinking that M can clean tables, hand out free samples, etc. I also thought about asking at the senior center and the animal shelter. 

 Any other ideas?? 

 M isn't good around other kids, but is very social and good with adults. His speech isn't clear enough to answer phones or anything, and he's too unpredictable to be around cooking (hot surfaces) or food preparation equipment (sharp things). He would be good at snack bar kind of work... (Hmm.. maybe the movie theater?) He's good with Gameboy and computers, and he can make change, so I think he could run a cash register (if someone was willing to donate the time to teach him). 

Our town is small enough to have some smaller family owned businesses, I think those are the places I'll have to approach... although I might see if Wal-Mart might let M be a greeter (or work with one of their greeters). 

 What do you think? Ideas, thoughts, suggestions?? 

 *edited to add* I've already been given several very good suggestions... Thanks, keep them coming! I'm going to make a list of ideas here and add to it as people leave comments (and ideas!) for me...
  1. stocking shelves
  2. assembly work
  3. fill boxes for shipping
  4. pet store clean up/odd jobs

Tuesday, October 16, 2007

I was so very excited the other day to get a package from my wonderful sister...

 Guess what was inside? 

Two antique canning jars! Woohoo!!! 

 When she was here visiting not long ago, I mentioned wishing I had some antique jars for a project I wanted to try... so she sent me some!

Saturday, October 13, 2007

Please stop over at my brother's blog to congratulate him on his acceptance, as a full member, into the Illustrators Ireland Guild. 

Steve is an incredible artist and I'm so happy that he's getting the recognition his work deserves. 

 You can click on this link and scroll down to my brother's name (Steve Cannon) then click on his name for a peak at some of his work.


Congratulations Steve!!!!

Thursday, October 11, 2007

scattered thoughts.. a few minutes here and there, equal a disjointed post. 

Renee left a comment with a question I decided to answer here because I'm guessing this might be something other people are also wondering about. She asked: "Is there a problem with decreasing M's Haldol and then increasing it if the other symptoms are worse? I don't see the harm in trying something new, but then I'm not living this." 

 Basically Renee, that's what we are doing... cautiously decreasing the haldol, seeing if M can manage the decrease... but being ready to increase it again if things go downhill too much. 

 It's not as easy as it sounds though... Schizophrenia is (arguably) the most serious of the major mental illnesses, childhood schizophrenia tends to be more severe than sz that starts during adolescence or adulthood, and M has severe childhood schizophrenia. There are no medications left to try... we've tried them all (some several times!), trying to get him stable. Each medication he takes plays an important role in his stability and haldol is one of the most powerful of his meds. Unfortunately, unlike most people with sz, he's has continued to be symptomatic. So even a tiny decrease in one of his meds has potentially disastrous consequences... 

 The meds keep him fairly well connected to reality, and keeps the worst symptoms of his illness (hallucinations, delusions, paranoia) from taking over. If the symptoms get worse M is in danger. In the past he's tried to run onto a busy four-lane street (trying to get away from hallucinations that seemed very real and threatening) during an unstable time. I managed to grab him and stop him just before he ran into traffic. He's tried to get out of the car, traveling 55 mph on the highway, because he was hearing voices that told him too. He's hidden under a table, crying in fear and panic, truly believing that someone was coming into the house to kill him. 

When the symptoms take over he's in danger, he's traumatized, and he's also in terrible pain. It's different from physical pain, but it's pain nonetheless. We could have him admitted into the psych unit if things get too bad, but there are almost no inpatient options for children who are both mentally ill and developmentally delayed... and he would still be suffering the pain and fear the symptoms bring, plus he'd be in an unfamiliar (but safe) environment. 

 So as I inch down the haldol, it's with an awareness that I'm playing with fire... I could make things much worse, trying to make things a little better. 

 Make sense? 


 On a lighter note, for anyone waiting with baited breath to hear the latest exciting details of my refinishing project (drum roll please...) 

I started stripping the roll top yesterday. The cubbies were driving me crazy (they are some kind of weird wood that refuses to let go of the paint!) so I decided to work on something else. Luckily the paint is coming off the roll top easily, 

It's so exciting to see the beautiful wood coming out from under all that paint!  

Wednesday, October 10, 2007

Hmmm..... what to write about. Nothing terribly exciting going on here... 

We are celebrating two birthdays this week though (and that's pretty exciting!). DD#3 (K) turned 20 on Monday and R turns 11 on Sunday! 

Since we kind of have two sets of kids, the older set and the younger set, there seem to be two "babies" of the family, K and R. These birthdays are a reminder that both my "babies" are growing up! We took K shopping for her birthday, then had lunch with DD#1 and the grandkids. It was VERY (VERY) nice... I left M at home with dh and it was just amazing how relaxed and enjoyable lunch was. I almost never do anything without M and I guess I'd forgotten just how easy things are without him. I try not to think too much about how different things would be if he wasn't here though, that's dangerous thinking... I think the way our situation (living with psychosis) has worked for so long is because it's become our "normal". Thinking too much about what is normal for others, is only going to make things more difficult since, as long as M is at home, we can't live what way...  But anyway... it was a nice afternoon. 

 R's birthday party is Saturday. We were able to reserve a clubhouse not far from us for the party. It has a "movie room", two nice sitting areas, a kitchen and even a pool and hot tub! We're just using the inside rooms, not the pool, etc, but it should be fun... R is beside herself with excitement and has been counting down the days for weeks! 

 We've been staying home a lot this week... The past couple of weeks have been so busy that staying home feels wonderful! The kids are getting school done (without trying to fit it into a few minutes here and there) and there is plenty of time to enjoy these beautiful fall days. 

 Well, after decreasing M's haldol, he's struggling a bit... but not too bad, it's manageable. I was going to decrease it again yesterday but the pdoc said not too, and sounded as though she's questioning if we should decrease it at all. I'm wondering what she's thinking... What her plan is for dealing with the tardive dyskinesia. She needs to check M again soon (the TD movements) and I'm hoping she'll have time to talk then about what the next step is. 

 I'm back working on my refinishing project (after not having time for it while K was here) and it's coming along. I've been working for days stripping the cubbies inside the desk. As soon as they're done, all that's left is the roll top itself. It's been fun to see the wood emerge from all that paint. I'm looking forward to starting the sanding and really getting down to the wood, I think it will be beautiful. 

 Can't think of anything else... like I said, not much is going on here. Hope everyone is well and enjoying these beautiful days.

Thursday, October 4, 2007

What's up

I didn't mean for my last post to be cryptic, or worry anyone. Here's what's up at our house... 

 The kids saw the pdoc the other day and unfortunately she found that M's involuntary tongue movements (neurological side effect to his schizophrenia meds) have increased. Last summer the neurologist said he thought M might have some "mild" tardive dyskinesia and now it looks as though he was right. TD can be a horrible, irreversible movement disorder, one that unfortunately is very common among people taking older antipsychotics (the newer antipsychotics were developed, in part, to avoid this terrible side effect). 

Because of the severity of M's illness he needs to take a medication (haldol) that carries a pretty high risk of TD. So after a couple of days of mild panic I decided to try to decrease M's haldol dose in an effort to decrease the involuntary movements. I'm taking a chance with M destabilizing again, but I think it's a chance I have to take. TD is a progressive disorder, one that can be stigmatizing and disfiguring... So if there is even a small chance of slowing down it's progression, I have to try it. 

 I've also been researching treatment for TD, and there does seem to be what looks like a fairly promising treatment using branched chain amino acids. I've been reading studies on this type of treatment and it looks worth trying... I've sent the links to the pdoc to see what she thinks. 

 In my spare time (grin) I've started a new, extremely messy, project. It started with one of our neighbors having a yard sale. At the sale there was the sweetest little rolltop desk. It was ugly, covered in flat black paint (with teal, blue and white paint showing through where the black had chipped off) but looked sturdy, and it seemed to be calling out to me... telling me to take it home. 

 So I did... 

 I've always wanted to try refinishing furniture, and this little desk certainly needed refinishing, so I bought some stripper and got started. At first I thought it was oak, maybe a dark oak... But now it's looking (to my inexperienced eyes) like it might be walnut. It's a very dark wood, and doesn't seem to have the strong grain that oak has, but it's a pretty hard wood. It has three drawers and a pull out shelf, and a bunch of little cubby holes under the rolltop. It still has the brass hardware around the locks (on the rolltop and the top drawer) although I didn't notice it at first because they were painted black. (Seeing the shiny brass peaking out from under the black paint was a nice surprise!) 

Here are some pictures of my project... (Which I'm working on in the living room. It's the only place big enough to work on it and still be close enough to watch the kids!) The drawers are out, the back and rolltop have been removed (the back needs to be replaced) and the black paint is gone from almost everything but the cubby holes. (You can still see a little black and teal paint just above the cubbies) I know it doesn't look like much now, but I think it will be really pretty when it's done. 

 To my siblings: Do any of you know how old Steve's rolltop desk is? I think this one is about the same age. The pull out shelf and drawer pulls are almost identical to those on Steve's desk. The rolltop on this one is different though, the slats are rounded, not flat.


 So this week I've been spending my evenings painting stripper on the desk, then researching TD on the computer while I wait for the stripper to work, then scraping the stripper off, painting more on, then back to the computer, then back to the desk... until eventually I get sleepy and go to bed! (I took tonight off... the laundry is piled to the ceiling and we have no clean clothes... so the desk and the research are going to have to wait until tomorrow!)

Science Fair!

The kids participated in a science fair co-op class through our homeschool group yesterday. 

R's topic was metamorphosis (butterflies of course), M choose simple machines. Here they are just after finishing their projects:


 R made the butterfly model, and had one real butterfly and chrysalis to bring with her project. 

M made lego models of the simple machines he studied, and did experiments seeing how much easier work is using simple machines.


 Here they are at the science fair, showing the other kids their projects:

Tuesday, October 2, 2007

Can't write...

...too tired. Lots going on here. I'll write later. 

 Here's something to amuse yourself with while you're waiting. click here, it's funny.