You are the book I did not write...

This post has been rattling around in my head for months... but I'm not sure if I can write it out in a way that makes sense...

I'll try.

Yesterday, I was thinking how incredibly blessed I am to be part of my children's lives. To share their ups and downs... to learn from them about places, people and events I wouldn't know about otherwise... and to just be a part of their world.

And I thought of this poem that E (dd#1) sent me when K (dd#3) left for the Peace Corps last February. E sent me the first verse or two, and in researching who the author was I found the last verse. The author is Anne Campbell and I especially love the first two verses... (The last verse doesn't touch me in the way the first ones do.)

Here it is...





I have learned so much from my children, experienced so many things I wouldn't have otherwise... from traveling vicariously along with the older three on their wanderings here and there, to understanding the brain in a totally different way thanks to M's schizophrenia, and being part of, even though it's second hand through R (dd#4), the experience of  growing up Black in a primarily White society.

So while I've never had the money to travel much (and M's schizophrenia keeps us close to home anyway) and my jewelry box is filled with costume and homemade jewelry, and baby teeth collected by the tooth fairly (am I the only one who can't bear to throw them away?)... my life is immeasureably rich, even though (I'm sad to say) I sometimes get so caught up in the day to day minutiae of life that I don't fully see it.

Yesterday however, was a day I saw it clearly... and I couldn't help but record it, and the poem, here.

But enough rambling... we have a busy day today... a doctor's appointment for R, maybe helping E with some running around she needs to do, and the RCC book club and a zumba class downtown (these last two are scheduled for exactly the same time, different locations... so unless R is willing to give up zumba, the kids are going to have to split up!) Oh, and I'm going to try to take a nice picture of the house... our trees are gorgeous right now and I'm hoping to get a really good picture before all those brilliant leaves fall to the ground. ;)

Sunrise...

...the promise, and blessing, of a new day.

I never get tired of watching the sun come up...

So... after posting my list of 20 things I wondered if maybe I shouldn't have...

Maybe it was too personal.

Maybe it would make people feel uncomfortable.

I thought about deleting it.

But then I decided no, I would leave it.

I didn't post it to make people feel bad, or guilty... but because, as Stephanie touched on in her comment, many times people just don't know what to do when a family is struggling with the mental illness of a child. People who really want to be supportive, and would know exactly the right thing to do if there was a death in the family, or the child of a friend was struggling with a serious injury or illness... don't seem to know how to be supportive when that serious illness is a mental illness.

So they do nothing.

They don't know what to say...

...so they say nothing.

They really want to be supportive... but they don't know how.

While my list is very specific to our situation, hopefully it gives at least a few good ideas for that unknown"how".

So the post is going to stay...

And hopefully people will understand the spirit in which it was written.

How to support parents of children with mental illness

I recently took part in an online survey for parents of children with mental illness. The survey was looking at the types of supports (personal, professional and community) that are typically available to parents of children with what they categorize as severe and persistent mental illness.

One of the questions really got me thinking...

They asked, "Please describe ways that your family members, friends, doctors, people you work with, and/or members of religious organizations could be more helpful and supportive of you as a parent of a child with a severe and persistent mental illness.".

I only had to think for the briefest moment before starting to type... In all the years of M's schizophrenia (9 years now!) it's the first time I've ever been asked that type of question, and once I got started answering it, it was hard to stop.

What I ended up with is a list of 20 ways to be supportive of parents of children with mental illness...

Here they are... (in absolutely random order)

1) Please stop wearing t shirts that make fun of mental illness or hallucinations, and think about the language you use... using "psycho" or "schiz" casually, or as even a light-hearted insult, is hurtful to me, and disrespectful of my son's struggle with the devastation of schizophrenia.

 2) Call just to say hello sometimes. No, it may not be the best time for a phone call on my end, but I'll let you know if I can't talk (or I'll let the machine take a message for me). Calling at a bad time is better than not calling at all.

 3) When you call, don't be afraid to ask how things are going.  And if you do ask, please take the time to listen to my answer.

4) If you are able, visit us sometimes... even just short drop in visits are so nice, they can brighten our whole day. It's virtually impossible to take an actively psychotic young person out to visit in other people's homes... so it can be easy to feel isolated.

5) But if you visit, know that as much as we love to see you, shorter visits are usually better than longer ones. People with sz tend to fatigue easily, and can be hypersensitive to noise, stimulation, and breaks in routine. Unfortunately, it often doesn't take long for them to overload... which leads to greater instability and can sometimes even trigger psychotic episodes... so short visits are probably best.

 6) Please be accepting and patient with my child, even when he says or does something inappropriate, irritating, or strange... or when he looks unkempt and disheveled... understand it can be part of his illness and we are doing the best we can.

7) When I tell you about difficult symptoms or behaviors we're dealing with, please don't tell me about the time your child did almost the same thing. Your typical child doing something similar, once, isn't the same as living year after year, 24/7, with extreme behaviors. I appreciate you trying to relate, really I do... but it's just not the same thing.

 8)  Be brave and ask how my child is doing, even if you're afraid to hear the answer (see #3b)... but don't take it personally if it's difficult for me to talk about the worst times until after they've passed and we've made it out on the other side.

 9) Tell me you are there for us, but only if you can match those words with actions.

 10) Please don't talk about my child's illness or symptoms to your friends, co-workers, neighbors, children, extended family, mailman, or anyone else, without asking my permission. I need to trust you to respect my child's confidentiality if I'm going to be able to confide in you.

11) Don't feel sorry for me... ever. I love my child and think he's awesome. His illness may have taken (stolen) many things from him, but it has also allowed me to clearly see the strength and gentleness of his spirit. He is a gift, and I don't want or need your pity.

12) Please don't be pushy about diets, supplements, or other therapies that you've heard will "cure" my child's mental illness. Understand and respect that we've tried everything we thought would have even the slightest chance of helping him... your pushiness brings misplaced guilt and that's not something I need or have time for.

 13) Likewise, don't tell me he just needs a different parenting strategy, or more attention (or less attention). He has a biologically based mental illness... my parenting didn't cause it, and can't cure it (see 12b).

14) Please don't judge the different way I must parent my child with mental illness. By necessity, I've had to learn to parent my son differently than I parented my typical children, and differently than most people parent. Trust that there are reasons for what I do, reasons that are probably not apparent to those outside our family... but are valid nonetheless.

15) Be patient with us when we seem undependable.  My son can go from calm to out of control very quickly, and (trust me on this...) you don't want us around when he's out of control. I can't keep appointments when he's unpredictable, it's too big a risk. So when I make plans with you, know that I'll do my best to keep them... but sometimes it's just not possible.

16) Understand that hearing about your typical child's successes (or complaints about your typical child's minor misbehaviors) can be hard for me, especially when my child is unstable and seems to be hanging on by a thread. Know that I'm happy for you and your child, and truly appreciate (probably even more than most people) the miracle of a typical child's accomplishments... but know also that those kinds of conversations can be hard and trigger grief.

17) But at the same time, please don't be afraid to talk to me like a "regular" person... Having normal conversations, about normal things, helps me to feel normal even when things around me are anything but... and they help me feel connected to the rest of the world.

18) Don't hesitate to share your struggles with me or lean on me for support because you feel like the struggles you are facing aren't as "big" as mine. I know of no rating system for life's challenges... You're part of my support system, please let me be part of yours.

19) Hugs are good.

20) And prayers are always appreciated.

A heavy fog rolled in yesterday...



....and sometime during the night a light snow started falling.

It's beautiful outside... peaceful and serene. It's funny how even a light snow seems to muffle the outside noises, leaving a quiet, cocooned-in kind of feeling.



I wish my mood matched the peacefulness of today's snow.

For the first time since M's orthopedist brought up M needing surgery, I'm feeling like this might all have been too much.

It's not like not having the surgery done was an option... M's hip joint was being damaged further with every step he took, and without surgery he was looking at years of pain, leading to a joint that was in need of replacement when he was still a young man. I'm guessing it's easier to fix the hip of a 17 year old with schizophrenia... who still has his parent's insurance, and is living at home, than replace the hip of a 30 year old man with schizophrenia who has only Medicaid, and may be living somewhere else...

No... it had to be fixed... but the recovery period has been difficult and isn't getting any easier.

He was sick last night, throwing up... I don't know whether he caught a bug somehow, or it's connected to the reflux that has shown back up now that he's laying down so much.

I hope he didn't throw up his psych meds, that could complicate things more than I want to think about.

We seem to be stuck in a not-so-good place... His developmental disability (which includes problems with motor planning and balance) has a negative impact on his ability to maintain the "precautions" he needs, so his hip will heal well, and with as little pain as possible. The pain that comes from his problems maintaining the precautions cause his psychiatric symptoms to worsen... leaving him even less able to remember and comply with the precautions (which leads to more hip pain, of course). The pain meds help with the hip pain, but make him sick to his stomach, and sedate him enough that his balance is even worse and he just wants to sleep. Sleeping all the time doesn't help his hip get better, and makes his reflux worse. And the stress of feeling sick (with the reflux) also leads to an increase in his psych symptoms.. and everything that goes along with that.

Nothing is working together very well right now...

M's two week follow-up appointment with the surgeon is Wednesday, and I have no idea how I'm going to get him safely down the stairs and into the car, through the long (tiring) appointment without a flare up of the psychiatric symptoms and finally... get him back home and up the stairs again (especially since I'll probably have to give him extra pain medication to get through the appointment, and possibly extra psych meds as well... both of which are sedating).

I might have to cancel the appointment, but I'm not sure they'll let me.. and I really want them to do an x-ray to make sure M hasn't knocked anything out of place with all the stumbling around he's been doing. (It's not like I'm just letting him wander around on his own, I'm with him every time he's out of bed... keeping my hand on him to steady him, but he moves so suddenly and quickly, and he's so big, that I can't always stop him before he's stumbled, or put too much weight on his bad leg, or whatever...)

I guess I'll call the orthopedist's office later and see what they say...

It's been almost two weeks since M's surgery, and exhaustion is starting to set in.

I don't mind the constant trips up the stairs, I figure running upstairs 5-6 times each hour for the 12 hours each day that M is awake, is probably good exercise. Shoot, don't people pay  money for step aerobic classes? All I need it some kind of exercise for my arms and I've got a whole body workout going... and it's FREE!

No it's not all the trips up the stairs, or watching bits and pieces of movies all day with M (movies that are invariably interrupted by more trips up and down the stairs...), or keeping track of the hours he's in the CPM machine and lifting the heavy thing up and down off the bed, arranging his leg just right each time, setting the speed as fast as he can tolerate (which still seems impossibly slow. All of that is very do-able. I'm not a good nurse, but when I have to do it I can...

The hard part is the stress of trying to help him deal with the pain, of worrying when he's going to really screw something up because he keeps forgetting and stepping on the leg that should be bearing no weight, and of trying to manage the psychiatric symptoms... symptoms that increase when he's in pain or tired.

As I've said before (like in my last post, I think...), it would be really nice if we had some psychiatric support. M's psychiatrist at the county mental health center is anything but interested or invested in his care. Despite the surgery, it's been two months since I've talked to her... It's impossible to contact her between appointments... all communication goes through "Nurse Sally"... who doesn't know M, has never seen him, and knows zero about his illness or developmental disability. I've spoken to Dr D, who's been M's pdoc for 5 months now, a total of about 30 minutes during those months.  She's seen him three times during that time, and there is roughly 10 minutes of appointment time to bring her up to date, share any concerns, talk about how things are going, and make any decisions that might need to be made. Needless to say he's receiving lousy care.

whine and squirrrels

M never does anything in an easy or predictable way...

He's been that way his entire life.

Whether it was learning to talk (took forever, years of speech therapy, spoke clearly for 7 years or so but is now barely understandable), or walk (he careened around crashing into everything in sight for years, was a mass of bruises for those same years, and still has a tendency to trip over his own feet).

Or more recently, having schizophrenia (having every medication side effect known to man, and symptoms that never go away despite the "best" medication), or... even more recently (like right now)... having an "enhanced" MRI prior to surgery (and ending up with some weird, no-one's-ever-heard-of-it complication... one that even after a trip to the ER and another to the pediatrician, is not going away and no one can figure out).

But I'm not going to blog about that.

I'm tired of talking, thinking, or writing about pediatricians, psychiatrists, orthopedists, ER docs, psych nurses, regular nurses, physical therapists, and/or hospitals or anything else even remotely related to the medical field... because at this point in time they seem to be greedily gobbling up great chunks of my life. (I'm thinking this probably doesn't bode well for my state of mind when M's surgery date rolls around in a few weeks!)

So I've decided to blog about squirrels instead.

I can think of no direct connection between squrrels and the medical field... This earns them a spot on my very short list of acceptable blog topics.

~ ~ ~ ~ ~

I looked out the window yesterday and saw a thief in my bird feeder...



He'd taken the top off the feeder and climbed inside for a bite of lunch...



When we lived in the city, we were absolutely overrun with squirrels. They were pests...

But we probably lived out here three years before we saw even a single squirrel (something that lives out here must like to eat them...)



(like maybe this coyote just outside the pasture fence?)

So now squirrels are kind of a novelty to us.

Mule deer in the front yard are commonplace... but a squirrel is something a little different!



I chased him off anyway...

I love the birds that come to the feeder, and didn't want him to eat all the birdseed.

He ran up the window, then stopped and peeked to see if I was still there.



I was, but he came back a moment later anyway... and even brought a friend with him.



I like this picture... see the squirrel all the way down inside the bird feeder?



I gave up then on trying to run them off...

If they are tough enough to survive out here, they can have my birdseed... they probably deserve it.

my evolving blog

My blog seems to be constantly evolving... 

There have been times when I've written mostly about our homeschooling, other times I feel more like writing about household or family things.  Sometimes I don't even feel like writing at all...

In the past I was very open here about some of the day to day challenges of raising (and homeschooling) two kids with disabilities... probably focusing primarily on the challenge of our son's schizophrenia.

I hoped that writing about our lives would help others to understand schizophrenia more realistically, and also hoped to spread the word that kids with serious mental illness can live at home and even be homeschooled successfully. In addition it was helpful for me to have a place to write about the frustrations, challenges, and successes connected to the unique parenting path we are following.

But I'm not writing or talking much about schizophrenia anymore...

I found that, for me personally, the stress and frustration connected to sharing about our journey with sz far outweighed the positives involved in being open about it.

So I'm no longer open...

I got tired of feeling like the train wreck that everyone slows down to look at... saying little thankful prayers that it's not them.

I'm sorry if this sounds angry or bitter. Schizophrenia changes people... and not just the person suffering through the symptoms.

Our struggles with schizophrenia continue, and will continue, but this blog will focus instead on the simple pleasures and events of our lives...

A brief editorial comment...

... on psychiatrists and psychiatry in general.

(I can't remember if I've posted this here before, if I have I'm sorry... but I think it's a good time to post it again.)

a brief editorial comment

Show me a sane man and I will cure him for you.

                                      ~Carl Gustav Jung

                                                                        

(Swiss psychiatrist and founder of analytical psychology)

Oh the weather outside is frightful...

Nope, it's not a blizzard... but it's enough to keep us home today.

I'm trying not to be too gleeful... (M was looking forward to seeing the pdoc)... but it's hard.

I do feel like I should explain about the pdoc..

.

She isn't a bad person or a bad physician... She's actually one of the best in the area, she's known for her kindness, genuine caring for her patients, respect for their parents, and her incredible expertise with meds. She is literally one of the top child psychiatrists around... (I've heard her described, by another pdoc, as being the absolute best in town).

So... what's the problem?

She is incredibly overworked right now, and her current professional responsibilities limit, to a large degree, her involvement with M. This is a relatively new situation (since summer of 2006), which began after she finished the research project she'd been working on for years and moved back into clinical work. She sees M (and R) privately, they are part of just a handful of patients she's kept through the moves from clinical work, to research, then back to clinical work. The position she has right now (medical director for a small inpatient/day treatment unit for kids who are diagnosed with both developmental disabilities and mental illness) involves stabilizing and caring for an endless stream of the toughest, most complicated kids... every kid she sees is in crisis. She keeps them just long enough to get them stable enough to be discharged to the care of other, less experienced, pdocs, before starting with the next child/family in crisis. She treats the kids other pdocs don't know what to do with.

I admire what she's doing, and how much she's trying to make a difference, but it doesn't leave much time for M. I know she cares about him, but the situation is what it is... nothing that's likely to change anytime soon. (I keep hoping she'll decide to move back into doing research, she was much more available then.)

Finding a new pdoc would be extremely difficult, and we'd almost certainly end up accessing services through the county, which means a much lower level of expertise, a ton of bureaucracy to deal with, and a definite lack of continuity of care...  I have thought seriously about trying to find a new pdoc but when I weigh the pros and cons it seems in M's best interests, for a variety of reasons, not to take that step until I have to (when he's an adult).

I can't figure out what the pdoc was thinking in terms of my friend's child. The only thing that makes sense is that she saw the child deteriorating, and knew she was leaving out of town for a couple of weeks and was hesitant to leave knowing the child might tank while she was gone. I don't think she had any idea (too busy to check?!) that the only open beds were in a substandard facility. For this pdoc, nothing is more important than safety, and she truly believes in traditional mental health care... She'd think nothing of keeping a child in the hospital over a holiday (or inpatient for months!), if she had any concerns about the family being able to keep the child safe at home.

Honestly, we've put her in a position that compromises that concern about safety many times since she took over M's care. I've had to convince her that we could keep him safe at home, during crises that... with any other kid... would involve a lengthy inpatient stay. She's been flexible with us, I believe, because she trusts me to always be honest with her and to do whatever it takes to maintain safety at home... even when that means staying with M day and night, or modifying our home in such a way that minimizes safety concerns. (That's why I couldn't lie to her about the car broken down, other appointments, etc. I've promised her that I'll always be straight with her...)

Yes, "Mama" I have talked to her (many times) about how it feels like she's "checked out" on us, and how that impacts my ability to trust her. Each time I bring it up she seems to feel terrible, apologizes to me, tells me how committed she is to M's care, and makes a "plan" of some kind to stay in closer touch. Unfortunately, the "plans" only last a day or two, sometimes a week, before a new crisis on the unit takes her away again.

 Jo, I really like your idea about suggesting the pdoc and I talk on the phone during M's appointment time today. I'm going to email the pdoc (cancelling the appointment! :) and will ask if she'd like to call instead.

So... the situation isn't quite as black and white as I've probably made it sound. This blog is a place for me to express my frustration, to vent... and I'm sure I don't always present a balanced, objective view of things.

Thanks everyone for the blizzard prayers... it's a winter wonderland at my house today, and we'll be spending the afternoon sledding instead of driving into the city for a pdoc appointment.

WOOHOO!!!!!!!

the neighbor from the *very hot, very bad place*

Anybody feel like giving me some free advice? I've got a neighbor problem that I'm not sure how to handle...

This is kind of a long story, so you might want to make a cup of tea, and hit the bathroom before you settle in for the drama.

We love where we live, but it's probably a very good thing the houses are far apart, because my across the road neighbor is a little unstable (and yes, I mean that in a clinical sense).

Until about a year ago we'd been acquaintances, and then became friends. Rose (not her real name, but I get tired of using initials, and she kind of reminds me of our goat Rose... prone to crankiness) and her husband have two kids, a little boy and a girl just a few years younger than R. R and the girl (maybe I'll call her Betty, after our good natured goat) used to visit sometimes when they were both up on the road getting the mail, and they got to be friends. Rose started asking me to watch for Betty's school bus and keep her here on the days that she wasn't able to get home in time to meet the bus. I didn't mind helping her out, and the girls enjoyed playing together.

Rose and her family went out of town last spring and she asked me to water her flowers while she was gone (their yard is like a park, absolutely perfect, with at least an acre of blue grass!), which I did...and they brought back some little gifts for the kids in return.

They invited us over for the 4th of July last year, buying hundred of dollars of (illegal) fireworks and setting them off (while I prayed that our animals weren't panicking too badly with all the noise and smoke, and that no stray sparks would end up in my pasture!).

I knitted her some dishcloths, and taught her how to sew. Last summer, when Rose decided to make poodle skirts for all 15 girls invited to Betty's birthday party, I pulled out my sewing machine and she came over after the kids went to bed and we sewed.

I thought we were friends...

She was always kind of a difficult person though, with an abrasive way of talking to people. She said she had worked with people with developmental disabilities before, and wanted to do respite for me. But I wasn't comfortable with the patronizing, slightly disrespectful, way she talked about, and to, people with DD, so I never asked her to do any respite. Fortunately, at the time she was asking to do the respite, our funding hadn't come through yet and I could honestly tell her I didn't have the funds to pay for respite yet... and by the time the funding came through, she was no longer speaking to me.

It all started with a little stray dog her husband brought home one day. Pie was a puppy, about 8 months old, and had been running loose for ages. Rose wouldn't put up a fence or dog run, (she told me it would make her yard look "trashy"... Ouch! We have lots of fencing... but I told myself not to take it personally) and she would just train the dog to stay on their land.

But the little dog wasn't easily trained... It would run down to our place each morning when I went to the barn, and jump on me. If I wasn't careful it would dart into the stalls and our little pasture, and bark and nip at Grant and the goats.

Rose got a shock collar for Pie and if Pie would run down to the road, she would "shock her into coming back".

It didn't work. Pie learned that my house was out of range of the shocking device.

Pie dug into my backyard and jumped on Quin, often leaving Quin (with his deformed hips and legs) in pain for days. She'd jump on the kids when they were outside, and run into my house when they tried to come in.

I called Rose several times asking her nicely to come get her dog... I tried to talk to her about dog training, keeping Pie on a leash until she understood where she lived, or putting up a temporary dog run. Rose told me she'd been around animals all her life and knew what she was doing.

Sometimes I'd feel sorry for Pie (she was getting nothing but screamed at by Rose) and let her hang out in my backyard.

Once when Pie was up on the road, some people stopped... thinking she was a stray... and put her in their car, going to take her to a shelter (or home... who knows), but I went out and explained that she was my neighbor's dog, and kept her in my house until Rose got home again. Rose wasn't happy with me, saying she didn't think she wanted the dog and I should have just let those people take her.

After several months of this dog, things were starting to get strained. I was seriously tired of working around this wild, ill-mannered dog, and Rose seemed to think I was somehow encouraging Pie to come down here.

Finally last fall, things came to a head. The farrier was here trimming Grant's hooves, and some neighbors had ridden their horses down for a visit. One of the neighbors, a little friend of R's, was on her new horse... a feisty Arabian mare. Pie kept barking and nipping at the mare's heels and the girl's mother was getting very upset, yelling up at Rose's house to "come get your dog". Rose sent her kids down, but they couldn't catch Pie, so finally the farrier stopped his work and caught the dog for them.

Winter came and we still saw Pie, but not nearly as often. During a bitter cold spell I found her on my backporch, shivering, and called Rose asking her to come get her. By that time Rose was obviously angry, and barely speaking to me.

Each time our cars passed each other on the road, I continued to smile or wave, but she just looked away. (Yeah, I'll admit it... after a while I waved and smiled just to bug her.)

As winter went on, we stopped seeing Pie as often, although I still found her out at the barn sometimes in the mornings, waiting to jump on me. Once when coming in from the barn, she tried to run in the house with me... I reached out to grab her collar to keep her out and she nipped my hand (well... she nipped my work glove), I had stopped calling Rose to come get her dog (since it seemed to just make her angrier) but I called that time and told her what happened. I thought it was ridiculous that their dog was trying to bite me on my own front porch!

In the spring I had to go around to survey all my neighbors about a paving project that was being proposed. I hated the thought of going to Rose's,  she'd been extremely rude to me at Christmas... barely speaking to me when I took a gift of Christmas cookies and treats to them, angrily telling me that she'd be down to talk to me soon because she had "things we needed to hash out" and, when I told her that we'd lost Grant the day before to colic, she coldly said that she'd seen he was sick and he looked so bad it was probably good he had died.

But I agreed to survey each neighbor, so I had to go...

I had to climb over the fence to get into their place (their acreage is gated) and I found Rose working in the backyard. She greeted me coldly, asking me what I wanted. I said I was representing the community board, and had this survey, and started to explain. She said she wouldn't talk about the survey until we'd "hashed things out".

Then... and this is the strange part... she collapsed, sobbing, into my arms. She cried that she just knew we were going to sue them because Pie had tried to bite me, and that she knew I was the one who called the sheriff because her dog was out (I wasn't, although I had considered it), she could tell I was leaving my porch light on at night to "lure" Pie down to our house to get them in more trouble. (what?!) She sobbed that they couldn't risk everything they had, risk losing it all to us in a lawsuit, over this dog.

By now, the theme song from "The Twilight Zone" was running through my head... I tried to reassure Rose that we'd never called the sheriff, weren't planning on suing them, and the porch light was left on some nights only because I'd forgotten to turn it off.

She said she'd taken Pie to the shelter earlier that week, but now she couldn't eat, couldn't sleep, couldn't stop crying, and was spending hours each day at the computer,  looking at Pie's picture in the "adoptable dogs" part of the shelter's website, trying to determine if she looked well fed and happy.

She was truly falling apart. I told her that if not having the dog was that upsetting to her, she should just go get it back. She said they wouldn't give it back to her. I offered to go adopt the dog myself and give it to her. (Yeah, I know... I'm such a chump!)

She cried on, and at, me for over an hour, and I started thinking that maybe she was finally starting to believe that I hadn't done any of the things she thought I'd done. It sounded like she might be headed down to the shelter the next day to try and get her dog back. As we left, M, six months early, invited her to his birthday party (Oh M, I wish you would have not said that!) and she said yes, "unless your mom is mad at me and doesn't want me to come". I said no, of course not, and let the matter drop.

Guess what happened next? During the time Rose was falling apart, crying to me in her backyard, someone adopted Pie. By the time she got back in the house to check the website, Pie was gone.

I check the website too, and knew what had happened, and I wasn't sure what that bad timing might do to our newly mended friendship...

It didn't take long for me to figure out that she had stopped speaking to me again. If I corner her at the mailbox, she'll be civil to me... but nothing more. Even during last month's heat wave, it was frosty between the two houses...

So... here's my dilemma (Are you still reading? If so thank you... you deserve an award!) Michael's birthday is coming up. We're having a square dance out in front of the house (the only spot big and flat enough), do I invite Rose and her family? I'm inviting our other close neighbors, and she'll see we're having a big party. If I don't invite her she will probably assume I'm angry at her (which I'm not). On the other hand, after inviting R and M to Betty's party last year (the year of the poodle skirts!), she did not invite the kids this year.

So....do I invite Rose and her family? She's made it very clear that she's upset with me. Is it stupid to invite her? Or would not inviting her just reinforce for her that I'm a terrible person. (Honestly though, her thinking was so confused the night she fell apart, that I'm not sure she's able to think rationally about me and the whole situation anyway.) She's unstable enough that, even if she were talking to me, I'd prefer to keep my distance from her...

Thoughts? Opinions?  Tell me what to do please!

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.

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.

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...

yesterday

Yesterday was kind of a strange day... 

 To start with, the wind blew HARD for most of the day, which is always unsettling. I had intended to get some work done outside, but when I tried to do some hand watering, the wind was blowing the water sideways and I had to stand just right for any of the water to reach the dry plants. So I decided it was just too windy for outside work and came back inside. 

 Then M had a total disconnect right after lunch... Usually the time from lunchtime through early afternoon is his best time of the day, so this was unusual. 

The disconnects are so hard for all of us, and so painful for him... It's just impossible to describe the trauma of someone disconnecting from reality. 

 It's not like it looks in the movies... It's a horrible, painful, experience for the person going through it. 

 M finally settled down for a (psychopharmacuetically induced) little nap, and while he slept R got school done. 

 She's so funny... She has yet to see the pattern in adding 10 to a number (24+10=34, then 44, 54, etc) even through I've explained it to her countless times. But yesterday, as I started teaching her about perimeter... what it is, and how to measure it... she was right on top of it. I skipped most of the scripted lesson because she "got it" the first time I explained it and was already happily measuring the perimeter of her quesadilla! 

 M wasn't able to get any school done... Once he woke up from his nap we kind of limped through the rest of the afternoon, he was still pretty fragile so I kept things as calm and low stress as possible. 

 That all changed right after dinner though... 

 Dh had gone outside to spread manure in the pasture where Blaze and the goats are. Not thinking that Blaze is a lot younger and trickier than Grant was, he left him out in the pasture while he worked. It took Blaze all of about 10 minutes to dash through the barn to the unfenced, and thick with grass, big pasture. 

 Dh didn't even notice Blaze was gone (he was still mindlessly driving the little tractor around, chopping up and scattering manure!), but M saw Blaze was out and came running to the house in a panic... R (now also in a panic) and I headed out to try and catch him. Unfortunately he didn't even have a halter on and spent the first couple of minutes we were out there dancing away from us. 

 We managed to get his halter on, but then Blaze refused to walk back to the pasture... planting his feet and refusing to take a step. (*rolling eyes* sometimes this horse is just too big for his britches!) I've been using this technique of making him back up when he gets ornery (my understanding is that it's very hard for horses to back up, and most would rather do most anything... even leave a pasture full of long green grass... to avoid being made to walk backwards), so I made him back up and then tried leading him forward again and we got him moving and back into the fenced pasture without too much trouble. 

 With the barn doors open and the wind blowing, there was a lot of dust blowing around in the barn so I decided to take advantage of the wind and clean the barn out. One thing led to another and R and I ended up working for over an hour...  sweeping out the dust, organizing the tack, moving stuff into the hay loft, etc... and doing lots of talking. 

 We corralled the goats and trimmed their hooves (an activity known around our house as the goat rodeo!) and I started teaching her how to use the big trimmers. We gave Blaze some extra treats for being such a good boy (sometimes) and talked about how much we both still miss Grant. 

 It was female bonding at it's best. We worked until (past!) bedtime and the barn looked so good by the time we were done that I was ready to set up a few chairs and a cot and move out there! It was a wonderful way to end a difficult, unsettled day.

I guess it's time for a regular post. It's probably going to end up being a collection of odds and ends "catch up" post...  

M is finally starting to do a bit better, thank goodness. I've almost totally reversed the med changes we started back in December, and it's been a good thing in terms of his stability. He's doing better than he has in months... 

 Unfortunately that still leaves us with the tardive dyskinesia. I spoke for a long time to his pdoc and her only suggestion is to try to very slowly decrease the haldol (even over a couple of years) and see what happens. There is nothing left to replace it with, so this isn't sounding like a plan that has much chance of success (and it's not at all fun to imagine a couple more years of med change related instability), but I'll try it. 

She was pushing very hard this past weekend for M to be admitted, but we talked on Sunday night and she seems ok again with him remaining at home. 

 The past week has been difficult and disappointing. Caring for someone like M can be very isolating, so it's hard when situations come up that add to that feeling of isolation... that feeling of being on the other side of a glass wall from the rest of the world. So I did what I tend to do when things get tough... I worked. I planted two more apple trees in my little "mini-orchard". I now have four apple trees, one peach tree, and one cherry tree on the hill to the east of the house. I also planted a couple more lilacs, they are the first "new" plantings in my hedgerow area. Unfortunately we had a hard freeze just a couple of nights after I planted them and all the blooms, both on the new plants and on the lilac I planted a few years ago, froze. So no lilacs flowers for me this year... 

 I also cleaned out the barn and bought stall mats for the goat's stall, then I picked up all the stall mats and rearranged them around so they fit better. (Think super easy jigsaw puzzle, except the puzzle pieces are extremely heavy!)  I also cleaned the house and reorganized the classroom. What a job that was! I pulled out four big boxes of books and homeschool materials we don't use anymore. I'm giving some of it to my daughter and my niece says she can use the rest, so now I just need to get the boxes to them. 

 I used to have a sampler that said "A Creative Mess Is Better Than Tidy Idleness", and I do believe that to some extent... but the classroom was so creatively messy that we could hardly get school done! 

 Here are the after pictures... I don't have any before pictures, but imagine the bookcase full to overflowing and every horizontal space (except the floor and table) being piled high with books, manipulatives, crafts supplies, etc. It was a mess!

 

 School is going well... I think the spring sunshine, the tiny buds of the new leaves on the trees, and the birds singing right outside the classroom window have recharged all of us. We even did some school outside yesterday... it was just too beautiful to stay in the house! 

 I've also spent a fair amount of time lately stalking deer. I never get tired of watching them. The other evening I found a little bit of the herd down in our lake bed...

 

 I thought these two half-grown babies were very sweet...

 

 This doe was so busy eating that she didn't notice me until I was very close. Check out the body language... she's just a little perturbed about me interrupting her dinner, and trying to decide whether to dart away immediately or try to grab another bite or two!

 

 I love the light in this picture, the sun was low in the sky... just starting to go down.

 

So anyway, that's what we've been up to. I'm still working, literally, through my disappointment... But on the plus side, I have gotten a lot done... I just hope my energy holds long enough to get the gardens in, I should get the them ready for planting this week (I'll turn the kitchen garden by hand, dh will use the rototiller for the big garden) and start planting in another week to 10 days.

goat pen wisdom (or semi-coherent ramblings)

I've got this post rattling around in my head, but I'm not sure if I'm going to be able to get the ideas and thoughts organized into words and sentences... I guess I'll just do what I can and hope for the best. (And if it turns out sounding like nothing more than semi-coherent rambling, I'll just chalk it up to lack of sleep and post some pictures instead!) 

 I have a really great family... I feel very blessed that my family is a close one. We really like each other and enjoy spending time together. Unfortunately we are scattered all over the western United States (and Ireland), so I don't get to see my side of the family very often. (Dh's family is mostly in town, so we see them all the time!) 

 So... my sister and her family (kids, spouses and grandkids) will all be in town next weekend for a graduation. I've been looking forward to seeing everyone, and was sad when I realized that most of the graduation plans wouldn't be manageable for M.  (I'm not going to go into detail about why the plans aren't workable for M, those of you who have children with significant disabilities will understand without being told, and it's too time consuming to explain it to everyone else.) 

Anyway, I was feeling pretty down about it... ...until yesterday. I was out in the goat pen shoveling manure when I realized that I don't have time for a pity party. The party is over. (I do some of my best thinking working at the barn, it's second only to the garden for being a good thoughtful spot!) 

 Yeah, we can't go to the graduation or reception... Yeah, I wish I could. But this is not a crisis! As I thought about it I realized that I'm ok with not being able to go.... because I recognize that sometimes I have to pay a price for doing what I believe is really important for M.  The course we've chosen to take, that of caring for M at home, through all the good times AND through all the crises, isn't an option that comes without cost. I'm thinking there are probably few things in life that are really worthwhile, even life changing, that are free... or easy. 

 Caring for M at home isn't free or easy, but it's one of the most worthwhile things I've  done... and the blessings of being his parent far outweigh the price I've had to pay. Right now the "cost" of caring for him is very high.  It's been months since I've been able to leave him for a couple of hours (unless he's asleep!), and we've had to let go of most of our homeschool group activities because he's been too unstable.  

But the other little bit of wisdom I found (remembered) out at the goat pen yesterday is that nothing is forever. This chapter in my life... with each page telling the story of the intensive care M needs, and my attempts to balance that intensive care with maintaining some kind of a normal life for R and I... this chapter, like all chapters, will eventually come to an end. 

 The day will (probably) come when M is no longer living here. Caring for him isn't my whole life. Yes, it's virtually my whole life right now, but not forever. And the time and energy I'm investing in seeing him through these ups and downs, and the accommodations I'm having to make to keep him home, are investments in his future, in his well-being. And if those things sometimes come with a high price tag, so be it...  It's a price I'm willing to pay. 

 I'm guessing that when I reach the end of this chapter and the next chapter starts, I'll miss these days. It's a blessing to be needed so concretely, to be loved so abundantly, and to feel as though the work I'm doing (even though it may not be valued by our society) is vitally important. 

 So I'll be home next weekend... and it's ok. I'll be thinking about the new graduate and wishing him well, and looking forward to possibly sharing a quiet dinner with my family before they all head back to their homes.

Hmmm... can't tell if that made sense or it's semi-coherent rambling. Better post a few pictures.  

 The deer are back, we've been overrun with them the past few days. They're hungry... they are nibbling on the tender new leaves of my perennials that are just starting to peek up above the ground (think spring mix salad for deer!), but they are also happy with last year's dry prairie grass... I took this picture yesterday in our back pasture

:  

 This is roughly the same place one year ago...

 

 We need rain badly, it's time for spring. (I actually woke up to snow again yesterday!) 

 Here they are grazing right outside the back fence (see the corner of my kitchen garden in the bottom of the picture?). That chain link fence is ugly but it does keep them out of my garden!

 

 Maybe it's time to clean out the barn and throw the scraps of hay out for the deer to find...