a newsy little update

So... no pictures of a finished barn quilt on the chicken coop today. We ended up running all over town on Tuesday, so I had very little time to paint... and yesterday an old friend spent the day, so no painting then either. It's supposed to rain today, and S is coming for a visit Friday-Saturday so Sunday might be my first chance to really spend time outside painting.

Since I have no "after" pictures, I thought I'd post a quick update instead...

M is one week away from his 22nd birthday... and is unsettled. He's always unsettled around his birthday, and unfortunately this year is no different. It doesn't help that his gastroparesis has been flaring up for the past few weeks, and he's thrown up more than a few of his bedtime medication doses. His schizophrenia meds are truly what keep him connected and reasonable... he can miss a dose here and there, but not many, without causing problems.

I do think the gastroparesis is finally calming down again, thank goodness, he's made it through two nights without vomiting. I think the cause of this recent flare up might might have been the Ensure I started giving him a month or so ago. A friend, who is a doctor, suggested it when I mentioned his weight loss to her... but I think it's just too rich for him. Unfortunately, he's down about 30 lbs over the past couple of years, and can't afford to keep losing like this. So, it's back to the drawing board... finding ways to get calories in, without triggering another flare up!

M's back is still an issue, and things seem to be at a standstill in terms of treatment. His spine doctor wanted him to stop wearing the brace (apparently, wearing it for too long starts to be counterproductive...) and ordered an MRI which was done several weeks ago. The doc said he'd call to let me know the results of the MRI... but despite multiple reminder calls on my part, I'm still waiting for the results. (grumble, grumble) The MRI will (probably) show either a fracture in his vertebrae or a malformed vertebrae... and which one it is should help steer the next direction we need to go for treatment.

R is spending the month running back and forth from Mr G's house, taking care of his horses. He's hired her to feed, groom, muck stalls, etc. It's only for this one month (neither of us thought it would be a good commitment to have during the winter) and she's already looking forward to the end of those early morning (and evening) bike rides down the road.

The chickens are great... none of them has been eaten yet... (thank you coyotes for small favors!)... and they are laying well. I do enjoy watching them pecking and scratching around in their run, and after a few treats of apple cores and salad scraps, they are SO happy to see me each day... They come running as soon as I show up at the gate, checking to see if I've brought anything more exciting than their regular chicken feed.

I'll close with this picture...



....one of the miniature pumpkins in the pumpkin patch. It's only about 2" tall right now, but perfectly formed. It will be fun to see how big it gets!

boredom...

... is the mother of invention.

Yes, necessity is too...

...but boredom (and schizophrenia) was the fuel for a little inventive fun M and I had yesterday.

He's been sick a lot the past week or so, his gastroparesis has been flaring up and he's thrown up his evening meds several times. Consequently, he's been more obsessive and unsettled lately... getting stuck on things, unable to shift gears, and just generally unhappy (and making everyone else unhappy at the same time).

Yesterday afternoon he was so unsettled... and nothing seemed to be helping him relax... even offering playing a game.... which is almost always calming to him.

He was too unsettled to decide on a game...

So I made him a new one.

While he sat on the front porch, unhappy, unable to make a decision, and too unsettled to focus on anything...

I grabbed a chunk of 4x4 left over from the pumpkin patch fence and quickly cut it into 5 squares (each ended up about 3.75" per side).

M was already coming to look for me in just the 10 minutes it took to do the cutting, so I grabbed the drill and a big drill bit and headed out to the front yard.

I didn't tell him what I was working on at first... trying to pique his interest... and it did. He was focused, watching me drilling for a few minutes and quickly realized I was making a die.

By the time I'd started drilling the second wood cube, he was excited and saying I should make five of them... which I was... so we could play yahtzee (one of his favorite games) with them... which had been my dastardly plan all along.





I didn't take time to sand them, since I knew he wouldn't be able to maintain focus for that long, so there were a few splinters, but otherwise the game was a success.

I chalked out a huge scoresheet on the small paved part of the driveway and we got a fair amount of exercise tossing the giant dice and then gathering them all back up again for the next "roll".



I beat him 301 to 273... I rolled a yahtzee.

By the time we were done playing, he was much more settled... the novelty of the game, and the bit of outdoor exercise seemed to have interrupted the stuck place he was in and the rest of the afternoon was much easier...




I'm still picking splinters out of my fingers though, I think I'll sand our new dice down before our next "yard yahtzee" game.

Busy, busy... and a few Christmas ponderings

I love and hate the Christmas season. I love the holiness of it, the time of preparation for the gift that we celebrate on Christmas day, remembering that tiny baby born so long ago in such primitive circumstances. I love the decorating, the trees, and feeling of good will... I love people saying good-bye with a "Merry Christmas". I love choosing (or making) gifts for people who are special to me. I love Christmas carols...

I hate the rest of it... the endless shopping, the shameless advertising with the push to always buy more, buy bigger. I hate Black Friday (which now starts on Thursday... Thanksgiving!). I hate the gaudiness we've created around what should be a holy day.

But now with less than two weeks before Christmas, the shopping is done, the gifts are wrapped (except a few that haven't arrived yet), and I feel the real Christmas spirit settling upon the house. I've been a little surprised this year at how much easier all the preparations are now that the kids are older. When K was 4 (she's now 26) we started taking foster babies, and got M the next year. From the minute he entered the house life has been challenging... he's been high need (HIGH need!) and his needs didn't decrease as he got older, they just changed... But now, finally, he's mostly stable psychiatrically (in other words most days he's stable... reachable... reasonable... with just occasional bad spells) and medically he's doing ok (we've finally figured out ways to mostly manage the gastroparesis with diet and OTC products) and he's become a fairly predictable, agreeable person. It's been amazing to me how much easier it is to shop for a Christmas gift (or 10!) or get some wrapping or decorating done with him older and doing well. It's been decades since I've had this much freedom...

It's very  nice, I could get used to this. :)

On today's agenda? Call Grandma and Grandpa (Joe's folks) and find out when the big white elephant exchange is (it's a big family, with just kids and grandkids there are 54 of us!), call my cousin and invite her to Christmas dinner, and call S's foster mom to confirm those Christmas plans. With the rest of the day I have a little upcycle project I've been excited to start working on....

No,  I can't say what it is... it might end up under the tree on Christmas morning, so it has to stay secret!

a dilemma... looking for advice

It's been awhile since I've posted... I'd like to say I've been too busy doing something incredibly worthwhile to be spending time on the computer... but the reality is I've been kind of flitting from project to project and haven't had much energy for any of them.

We did have our pumpkin give-away this past week, and gave away probably 25 pumpkins... I still have a few left so if you know me IRL and would like a pumpkin (or another pumpkin!) let me know!

I mostly posting now because I have a dilemma, a situation has come up that I've never had to deal with before...

Here's the background:

M receives SLS (supported living services) through our county CCB (community center board). He's very lucky to get it... because of huge funding issues, when people become eligible for SLS (upon turning 18) they generally go on a VERY long wait list. It is years, decades, before they reach the top of the list and start receiving services. Because of the severity of M's disabilities though, he was moved to the top of the list when he turned 18. SLS doesn't really get us a whole lot, we don't use the day program they'd pay for, for example... we're pretty used to doing things ourselves. It's an important safety net though for M... if something happened to me, SLS is already in place to provide some of the support I would no longer be able to provide.

To keep M's SLS we have to use at least one SLS service each month. M's plan includes hippotherapy, respite, and even a few hours of housecleaning (of the areas M uses) each month. M hasn't been able to do hippotherapy lately because of his hip, and he's been having trouble with the respite provider, so to keep his SLS I've been having a local agency (that works with the CCB) do a cleaning each month.

Honestly, I hate having someone in to clean... but I can't chance losing M's SLS. Once it was gone it could be years before he'd get it back.

So... on Tuesday a girl from RT (the agency that contracts with the CCB to provide this service) came to clean. I told and showed her what I needed done and let her go. R was gone shopping with E (dd#1), and M and I did school up in the classroom while the cleaner worked in the main part of the house. She was in the kitchen dusting up high at one point when I came out, and her big cleaning supply bin was sitting on the kitchen counter under the east window. I went back into the classroom and shortly after she came in and said she was done. She still had 90 minutes left of the time she was contracted to be here, but she insisted that she's "a fast cleaner" and everything was done. So I thanked her and she left.

I came out later and found that some of the things I'd asked her to do, hadn't been done... but I didn't think much of it because the last girl who had cleaned had also "missed" a lot.

The next day (yesterday) I was doing laundry and found some change in the washer... I brought it upstairs and went out to the kitchen to put it in the change jar the kids and I keep on the kitchen counter. It's a cool little thing I got to be a learning tool with the kids (especially R). It's a plastic jar with an electronic slotted lid that keeps track of how much change is in the jar, and each time you put a coin in a readout on the lid tells the value of the coin and the current total for the entire jar. Anyway... I went to put the coin in and the jar was gone.

I asked Joe if he'd moved the jar (something that's hugely unlikely because it's been just the kids and my little project) and he said of course not. It always sat on the kitchen countertop in the corner under the east window... but I looked in the kitchen cabinets, on the frig, IN the frig, anywhere in the kitchen I thought the girl who cleaned might have put it.

It's not here, and nothing else on the counter was moved or put away.

And the only non-family person who has been in the house was the girl who cleaned.

I called the agency who sent her and said the jar was missing and if she put it someplace she needed to let me know where it was. They finally called me back at 9:15 last night and said they hadn't been able to reach her yet but would keep trying. I told them if the jar was not somewhere in my home, if there wasn't a reasonable explanation for where it ended up, I would be calling the police this morning. There wasn't a lot of money in the jar ($60.+) but I'm wondering now, if she took the jar what else she might have taken? (Luckily, we don't have much that worth anything! ;)

Another worry is that a paper I'd received in the mail that day, about M's benefits, was laying on the kitchen table and it had both his social security number and full name on it. Had she written down that information down and taken them too? M's legally an adult now, now much trouble could someone cause misusing his SS#?

On the other hand though... it doesn't make sense. Why steal a jar of change... It's sure to be missed. Why jeopardize your job and your life for a plastic jar of change?

But there is no where else it could be. It sat on the counter because it was just a little too tall to fit anywhere else... And I wouldn't have moved it anywhere without thinking because it had gotten SO heavy, and I got a nasty cut on the back of my hand on Monday and was primarily one-handed for the early part of the week. I couldn't physically have moved it one-handed. I know M and R didn't take it... they don't steal. I know stealing often seems to go with FASD, but neither M and R EVER steal. (If M wants something that's not his, he just asks for it! :) And because of M's need for close supervision, we spend most of our time in the main part of the house... so even if one of them did suddenly try something completely out of character... there just wasn't the opportunity.

We've been gone to town a couple of times this week, but the dogs have been in the house and I can't imagine anyone going past three wildly barking dogs (with Emmaon top of them "smiling" and sneezing), through the house to the kitchen, and taking only a jar of change.

None of this makes sense.

It's almost morning and I'm trying to decide what to do... Call the police? Let it go? (The agency has already said they would repay anything missing) The girl who cleaned was young, probably early 20's and has a young child... If she took it, how much must she need the money? If she took it she must need it more than we do...

Maybe I should skip calling the police and let the only consequence to her be the problems she will have at work... Sixty dollars isn't enough to possibly mess up some one's life for...

But if there are problems later in terms of M's SS#, maybe I need to have the documentation of a police report that his personal information might have been compromised?

Aghhhhh! What to do...

I'd welcome opinions... What would you do?

What now?

It's been one week since M's surgery.  (And it's been one week since I had more than a couple hours of sleep in a row, so please excuse any whininess on my part...)

I'm worried about his recovery...

His GI system is NOT right... it's not even close. It seems that his belly can hold about 48 hours worth of food before deciding it's time to violently get rid of it. The lower part of his GI system seems to have checked out completely... working only when I load M up with super sized amounts of GI meds. (And even then not working much...)

M was very sick again last night, so as soon as offices start to open, I'll need to start calling docs... probably starting with the pediatrician. I'm hoping we can go in for an x-ray (to check for blockages in his bowel) and then come back home again. I really REALLY don't want him readmitted.

Poor R... this is totally feeding into all the fears she had before the surgery. She has phobias connected to both vomit and hospitals... She was so afraid that this surgery would turn out like last time... with in and out hospitalizations, and M vomiting for months. It's about 45 degress outside right now, but R is sitting out on the back porch to eat her breakfast... that's how stressed she is about being in the house after M was so sick last night and this morning.

And poor M! He too was worried about this surgery... he's the one who lost 20 lbs after the last surgery and suffered through months of stomach pain, medication induced diarrhea, and the indignity of (seemingly) the whole world talking about his bowel habits.

He fell last night on the tile floor... his newly repaired hip was VERY unhappy about the fall and has been terribly sore since. Even just getting an x-ray done is going to be so hard on him... painful.

I know (I believe) the surgery had to be done. Knowing that the surgeon found the labrum still intact and in good shape reinforces for me that getting the hip fixed (before there was damage done) was a good thing.

But I wish we didn't have to go through the same misery we had last time with M's GI system. It's hard for me to think about finding the energy again for the kind of long drawn out recovery M had after his last hip surgery.

I'll do what I have to do though... and count this as a learning experience... apparently M's gut can't manage any surgery... it must not have been the narcotic pain killers, or the complete lack of activity after the last surgery that triggered those problems... since neither of those were issues this time.

When I'm tired my mind travels a path I usually carefully avoid... wondering about M's future. People with schizophrenia typically don't live as long as people without sz... and FASD has it's own set of life shortening problems. M has both... and a bunch of other medical/physical problems. And he, apparently, can't tolerate any surgery without severe consequences.

I can't think about his future right now... I need to think about today. Which doctor to call first... should we have him readmitted, or try to handle things at home? (with lots of physician support, of course...)

And my younger two daughters each have birthdays during the next few weeks... (K will be 24, R will be 15!) and I'll need to get some shopping done, and plan the celebrations! (Hmm... celebrations that might be tricky if M still can't eat... :( )

But in my spare time, because painting is one of my favorite therapies (and I've already painted everything inside the house that needs painting and I can reach!), I've started working on a long-thought-about project...

..decorating my barn with a little "barn art". Yesterday, I got about half the face drawn on the barn with chalk... hopefully I'll finish the chalk part today and start painting.

It took me awhile to figure out how to take care of M and work out in the pasture on a ladder, but necessity is the mother of invention you know... and finally I just loaded M into the minivan and drove him out into the pasture to the barn. He was able to sit or recline on the lovely soft leather seats, while I worked up on the ladder just a few feet away.

Tucker was the only one who thought this was a terrible idea... I wish I had a picture of the shock on his face as I drove the minivan through the gate and into the pasture. He looked absolutely incredulous that I would do such a thing! At first he took a defiant stand just inside the pasture gate... sure I would never move that huge red thing past him and into his territory. But as the minivan kept moving towards him he rethought the wisdom of taking a stand against the intruder, and settled for snorting out a warning and tossing his head around as he ran away.

Ah Tucker... you make me smile... you are such a brave little donkey.

So, between phone calls to doctors today, I'll be out at the barn on the ladder... and maybe part of the good that will come from where we are right now is a funny little bit of barn art smiling over my pasture!

I.E.P.

Individualized Education Program (IEP):

An IEP describes an individualized educational program that has been designed to meet a child's unique needs.  Each child who receives special education and related services must have an IEP.  Each IEP must be designed for one student and must be a truly individualized document.  The IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when age appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of a quality education for each child with a disability.

The Individualized Education Program (IEP) is a legally binding document.

`

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For the first time in 11 years M is enrolled as a student in a public school district.

For the first time in 11 years he has an IEP.

I'm not sure if this is a good thing or not.

I had high hopes for the school to work transition program offered by our county. It is for 18-21 year olds who have disabilities, and focuses on teaching life and employment skills. I thought it would be a good next step for M... learning from someone other than me, and being pushed... stretched... a little in terms of work skills. Statistically, it's very unlikely he'll be able to work, even part time, as an adult. The schizophrenia makes working very difficult... the FASD and his physical problems only add another layer of challenge to keeping a job.

But...

... he's already shown that he's capable of things you wouldn't expect from someone with his diagnoses. So my thought was, lets see what he can do... (Always monitoring, of course, that he's not pushed too much... risking destabilization and other problems.) I had high hopes for the program...

Now, one month (and one IEP) into M's new schooling experience, I'm realizing that it's not all I'd hoped. His time on work sites is severely limited by his need for line of sight supervision and his hip problems.  During his time at "the center" (really just a single temporary classroom sitting in a parking lot in town) he's working on things that we've already done at home. When they aren't at job sites or working at the center, they work on community assess... being out and about in town, shopping, eating out, etc. That might be a valuable thing to work on for kids who have spent Monday through Friday for the past 12 years in a school or in a day care setting... but M has spent the past 12 years out in the community. Homeschooling has already given him many (most?) of the skills they are working on in this transition program...

Sometimes, when they tell me what they are doing for the day, I feel like they're just babysitting.

We don't need babysitting.

And while M is there playing Uno and putting crayons into baggies for IHOP to hand out with their kid's menus...

... he's losing academic skills.

Skills we worked hard for many years for him to learn. This isn't just my fear or a guess... I'm seeing it happen.

I just can't let those skills go without trying to help him hold onto them.

They do no academics at his transition program.

So I've got to make sure we have time to do enough school at home to help him hold onto what he's already learned, and hopefully continue learning.

This probably means limiting his time at the transition program.

I'm going to have to spend some time thinking about what this might look like, then we'll need to have another meeting to make the changes to his IEP. (Right now it's written for him to be there full time...)

Right now though, my mind is full of worries about his upcoming hip surgery (scheduled for Tuesday) and my concerns about his transition program are like the miserable flies out in the pasture... buzzing through my thoughts, never holding still long enough for me to do anything about them, but never going away either.

Maybe when M's in the hospital, and I have those quiet hours with nothing to do but sit by his bed while he sleeps, I'll be able to get my thoughts organized and figure out a plan that will help M stretch and grow in living skills, while still leaving time (and energy) for his academic skills.

I should also follow up on my last post while I'm here. No, Liese, I'm not 72... I guess the horizontal candle on my birthday cake doesn't look as much like a minus sign as I thought it did. The candles say 63 - 9. :)

A quote....

... I recently found, and love:

"Sometimes courage doesn't roar;

sometimes it's a quiet voice at the end of the day that says

I will try again tomorrow."

I would like to make this into a plaque or something for M's room. He has so many struggles... the FASD, the schizophrenia, his malformed, painful, hips and his poorly working GI system... but he shows so much strength and spirit in not letting those things weigh him down to the point that he loses hope. He shows great courage each day...

This quote also makes me think of my friend D who has autism. He, with his family, is right now dealing with a community that doesn't understand him, and so is afraid of him. They are cruelly trying make him move from his neighborhood... I see so much courage in D and his family and they try to work through this situation.

And it makes me think of an older woman I recently met, who despite suffering a stroke five years ago, and having a left side that doesn't always work the way she'd like it to... is still brash and sassy... an upbeat person who cleans houses and does respite care for the developmentally disabled to support herself and her barn full of horses.

I think this quote is a good reminder that courage is not seen just in the BIG dramatic events, but is found every day in the quiet (sometimes sassy!) courage that is all around us.

WHAT kind of day was it?*

I was doing a quick scan of the news online this evening when I came across this headline:

Stocks: A Schizophrenic Day

I had to click on the story, of course, just to see what the writer of this article thought constituted a "schizophrenic day" for stocks.

I know what a schizophrenic day looks like for people. I am intimately acquainted with them. M was diagnosed with schizophrenia almost 10 years ago. Which means I have approximately 3,600 "schizophrenic days" under my belt. I figure by now I'm an expert on the subject.

So as I clicked on the article I wondered what I would find...

Were the stocks delusional... believing perhaps that the U.S. and world economies were strong again or even just back somehow to where they were 11 years ago, and had started charging upwards in a bull market?

Perhaps the stocks were apathetic... not having the energy to go either up or down. Just stuck in one place with no energy or motivation to move at all.

Or were the stocks hallucinating... hearing voices trading them here and there, or telling them that they were worthless... that no one would ever want to buy them... they were good for nothing... and the bottom had dropped out of the market anyway?

Maybe the stocks were paranoid...frozen in fear or wild with panic, believing, irrationally, that their very existence was in grave danger... their value was draining away and they would be nothing but a painful memory by the end of the day.

Perhaps the stock's "schizophrenic day" involved bits and pieces of all these things, like M's "schizophrenic days" do.

But no... apparently the writer really had no idea of what a schizophrenic day looks like. He used the term as a quick (but inaccurate) way of describing a day in which the stocks went up and down. The article describes the stocks as taking a "wild ride"...

Hmmm... yes schizophrenia can be a wild ride... but in the interests of accuracy I think the headline would be more fitting if it read:

Stocks: A Bi-Polar Disorder Day

(*One of my pet peeves... referring to something as "schizophrenic" in a casual or inaccurate or disrespectful way. It's not like there is a shortage of perfectly good adjectives or anything... )

Pumpkin Therapy

So.... the pdoc still hasn't called or replied to my last two emails. With the increase in one of his meds M is better in some ways but worse in others.

I'm going to have to track the pdoc down today and try to pry some advice out of him.

I'm irritated and frustrated with the pdoc so I spent some time this morning in therapy...

... in the pumpkin patch.

I was on my way back from the barn when I decided to stop and pull just a few weeds before heading inside... but one thing led to another and next thing I knew I'd spent a good 30 minutes down on my knees in the wet mulch and mud (it rained like crazy last night) pulling weeds.

I only came inside because it was getting late enough in the morning that M might be waking up and I needed to be in the house and showered before he started moving around. My barn pants were so heavy with water and dirt by the time I was done that I had to hold them up like a long skirt to keep from leaving muddy drag marks as I walked through the house.

I do love growing pumpkins... I love the way they vine around, the huge, sunshiny yellow flowers, and the promise of pumpkins in the fall.

Last year we had pumpkins to eat, to freeze, to carve and to give away. We had so many pumpkins that we invited the kids in the neighborhood to come pick a halloween pumpkin and even had a "free pumpkin" stand. It was so fun to watch the kids go through the patch, carefully picking their halloween pumpkins, and we even met a few neighbors we hadn't met before. :)

I've planted extra this year just to be able to have a pick your own pumpkin patch again...

  (the last few pumpkins last year...)

Sigh... enough about pumpkins, I suppose it's time to go and start trying to track down the pdoc again.

I got up this morning... (a short pdoc rant)

... and the first thing I did, after the barn work, was email M's pdoc.

I almost NEVER email M's pdoc...  He's ok, but we've never "clicked" and honestly... unlike M's old pdoc, he seems not to give a d*** in terms of M's day to day ups and downs, so there is seldom any reason to contact him. M's sees him every few months, he writes a bunch of prescriptions, and that's about the extent of it.

M's pdoc is great when it's life and death though... There have been a couple of times since he took over M's care that the situation was literally life and death and he jumped right in and was available, helpful, and kept with it until the crisis had passed.

But if it's not life and death he really doesn't have time for it.

This is the third time I've emailed the pdoc in the past month...  letting him know that M's hallucinations had significantly increased and his insight* had decreased. The pdoc called me after the first email, but didn't offer any suggestions or advice. He never responded to the second email.

M had another serious "disconnect" on Friday and I decided I needed to do something... (lots of hallucinations with poor insight is a poor and risky combination)... so I increased his haldol. I let the pdoc know about the change in this morning's email and asked (again) for direction.

I know I'm very lucky to have a pdoc for M... especially one specially trained in child/adolescent psychiatry and with the knowledge and experience M's pdoc has.

And I know this pdoc (who also works at one of the state hospitals)  probably has, at any given time, MANY patients with schizophrenia who are hallucinating and have poor insight.

But I have only ONE child with schizophrenia who is hallucinating and struggling with insight and I would really appreciate the pdoc taking the situation somewhat seriously!

Ok.... end of rant.



*Insight, from Wikipedia:

In psychology and psychiatry, insight can mean the ability to recognize one's own mental illness.^[1] This form of insight has multiple dimensions, such as recognizing the need for treatment, and recognizing consequences of one's behavior as stemming from an illness.^[2] A person with very poor recognition or acknowledgment is referred to as having "poor insight" or "lack of insight." The most extreme form is Anosognosia, which is the total absence of insight into one's own mental illness. Many mental illnesses are associated with varying levels of insight. For example, people with obsessive compulsive disorder and various phobias tend to have relatively good insight that they have a problem and that their thoughts and/or actions are unreasonable, yet are compelled to carry out the thoughts and actions regardless.^[3] Patients with Alzheimer's disease, schizophrenia and various psychotic conditions tend to have very poor awareness that anything is wrong with them.^[4]

my series of unfortunate (and fortunate) events

The other day Renee at A Baker's Dozen wrote a post about her Series of Unfortunate Events at Church. I love reading Renee's blog and felt her pain as one thing led to another for her that chaotic Sunday morning.

Last night we had our own Series of Unfortunate Events, so... believing that imitation is the sincerest form of flattery... I've decided to post my own series of unfortunate events (with a few fortunate events mixed in too... )

R was signed up to participate in the Miss Colorado Pageant last night as a "special princess". It's really a wonderful opportunity for girls connected to Special Olympics to be partnered with one of the Miss Colorado contestants and to be introduced with them on stage at the pageant. We aren't pageant kind of people (it kind of doesn't really go along with mucking out stalls and digging around in the garden!) but we've done it a couple of years anyway... it's fun for R to exchange her normal wardrobe of jeans and mud boots for a dress and heels once in a while.

Anyway... the pageant was last night. It was up in downtown Denver and we had to be there at 5, which meant a 30 mile drive through Friday night (the worst!) rush hour traffic. M was staying home with Ruth (his
respiteformer respite provider), so it was just R and I to get dressed up and ready to go. I'd retighened R's locs that morning, curled them, and wove tiny silk flowers into them, she was wearing her FAVORITE dress of all time and new high heels and jewelry. But 3:15 we were ready to go. (Yes it would take that long to get to town... plus we had to pick up some prescriptions on the way.)

Unfortunately Ruth was late getting to the house... which made us late getting on the road. Ruth has been doing respite for us for a couple of years so I didn't think I needed to give her detailed instructions... she knows about M's GI problems and that he can't just eat all the time while we're gone, and she knows he can be edgy and just needs to be "handled" most of the time. So I quickly got out his bedtime meds, told her what I'd planned for them to have for dinner, and we left.

Unfortunately the car was almost out of gas. There was barely enough to get to the gas station... much less all the way to Denver. So we stopped to fill up. It seemed to take forever...

Unfortunately now we didn't have enough time to stop for the prescriptions. The pharmacy isn't open on the weekends, and M couldn't wait until Monday, so a quick call to Joe... Could he pick up the meds? (Fortunately he could... whew... one thing off my plate!)

Unfortunately traffic was terrible... stop and go the whole. way. into. Denver. It was also HOT outside (at least for here) up in the 90's. This will become important later.

Unfortunately I missed my turn for the parking garage (just slightly lost) and was circling around (through downtown Denver at rush hour!) when M called in a panic. R took the call and told him I couldn't talk. I was busy trying to figure out which lane to stay in, where the entrance to the parking garage is, and how to avoid being hit by the taxi the was swerving around me.

Unfortunately M couldn't wait so as I pulled into the parking garage entrance I took the phone from R because, by that time, M was completely falling apart. He was crying and starting to disconnect..  Ruth had tried to force him to do something (or not do something) by threatening him with no dinner. What?! Was she trying to trigger an episode? And anyway... she can't withhold his dinner.  M was frightened (when he starts to disconnect he becomes paranoid), afraid to go into the house with her, was in the garage (full of potentially dangerous things) alone, was falling apart, and I was 30 miles away. I paid the parking garage attendant as I talked to M, grabbed the parking stub, and drove through the garage and parked the car without really paying any attention to anything but M.

Fortunately we made it to the pageant in time. R looked stunning, her friend A was there so R was thrilled, and R is independant enough that I was able to keep trying to talk M down while she joined the rehearsal for their part of the pageant. I hung up long enough to call Joe to tell him to get home quickly and get Ruth out the door because M was escalating, then called M back and kept him on the phone until Joe was almost home.

Once the rehearsal was over there was time for pictures with a lovely backdrop (and a professional photographer posing the girls while he also took their pictures). Finally off the phone with M I pulled out the camera to take a slew of pictures of my beautiful daughter...

Unfortunately I'd forgotten the memory card at home, in the computer, and couldn't take a single picture.

The pageant went well. R was paired with "Miss Littleton"...  a sweet, lovely, girl, and they had lots of time to visit and plan their short "routine" for the pageant. R looked amazing on stage... so poised and happy. After her part was done we stayed and watched the rest of the pageant, until we were both tired, hungry (no time for dinner earlier, and it was 9:00 by then), and headachy from all the noise and commotion. At intermission we left and headed for the parking garage.

Unfortunately I'd been so busy trying to calm M down when I was parking the car, that I had no memory of parking it. I wasn't worried though.. I'd memorized the elevator we needed to take us to where we had parked. (I did think to do that!) So we took that elevator (level 4, elevator 5) and expected to see the car someplace close.

Unfortunately it wasn' t there. We looked all over level 4 and our car was definitely not there. Poor R's feet hurt by then, but I couldn't just leave her someplace while I found the car, so she followed along behind, sore feet in high heels, as I looked up and down the rows. It seemed unlikely that someone would steal an older Kia Sedona...  Where had I left the car?!

Fortunately after 20 minutes or so of looking, I decided to check level 5 elevator 4 and found the car right away. We were sooo happy to see it, and we immediately started deciding where we could find a quick dinner because, after all the walking, we were even more tired and hungry than we had been before.

Unfortunately this parking garage has a policy that without your parking stub you can't leave the lot without paying the maximum parking fee ($33!).

Unfortunately I couldn't find my parking stub  (I'd been so focused on calming down M, that who knows where I'd put it!)  But I'd already paid... and I was hungry, tired and wanted to go home. I was able to show them the receipt from when I'd paid going into the lot but, at first, that wasn't enough.

Fortunately they decided to make an exception to their rule and let us go... without paying again. (Although I did get a lecture about keeping the stub!)

Unfortunately we'd only driven three blocks when the car died.

Unfortunately it died on Colfax, right in the middle of town, six lanes... cars zooming around us, horns honking. I tried to get it to start... but it was not happening.

Unfortunately R's anxiety immediately kicked into high gear and she was close to total panic, especially when a couple of homeless guys came walking up to her window.

Fortunately they were just asking if they could push us out traffic. I said yes. What sweet guys.

Unfortunately the only place they could push us to was into a bus lane.

Fortunately I have AAA.

Unfortunately they said it would take 90 minutes to get there.

Fortunately R's anxiety was starting to calm down because...

unfortunately I'd left her anxiety medication at home.

Fortunately the tow truck was there in about 45 minutes (much better than 90!)... he hooked up the car and we headed towards home.

Fortunately the tow truck driver was really nice because...

unfortunately it took an hour to get home.

Unfortunately R's anxiety kicked in again, riding in such a BIG and noisy truck and I had to " talk her through" the whole ride home.

Fortunately we got home safe and sound (as did my car) and the tow charge was less than I expected, and the beeping of the tow truck didn't wake M up (who'd had a decent evening once Joe had sent Ruth home, and took him out for dinner!).

Fortunately it appears the car had just vapor locked (too much heat on the slow ride up there) and started right away once we got it home.

Fortunately it didn't break down on the highway or on the way to the pageant.

Fortunately R was still awake enough once we got home, paid the tow truck driver, and ate something (dinner at 11, how cosmopolitan!), for a few pictures.

Fortunately they turned out pretty good. Don't you think?

`

`

It was a wild evening, but I'd do it all again in a heartbeat for this smile....

medical stuff... a long rambling update

By  necessity we see a lot of doctors... specialists connected to all of M's issues, the kid's pediatrician for everyday stuff, and lately R's needed to be seen more frequently because of the back pain she's continued to have since the car accident we had last December.

This past week we had two major appointments... R saw an orthopedist at The Children's Hospital who specializes in back pain, and M had MRI's and arthrograms of both hips.

Unfortunately, R's appointment was a total waste of time. The orthopedist was very young, and probably very smart... but his "people skills" were terrible. He was rough in his examination of R, and apparently paid no attention to the information sheet they had me fill out which, along with her medical history, let them know that she's developmentally delayed. He fired questions at her way too fast for her to process and answer... even if she had been familar with the big words he was using. After a two minute exam he gave his opinion that her back pain was nothing, and started in with a long patronizing lecture to me about how I just needed to stick with PT and R would be fine.  At that point I'd had ENOUGH. I stood up, thanked him for his time, walked to the exam room door and opened it. Luckily he took the hint and left. It was also lucky that it was a heavy door, with one of those things on it to slow it down as it shut... because otherwise it might have been slammed behind him.

R said he was so rude to her that she was trembling during the examination and that she'd rather just keep hurting than see another rude doctor.

The kid's pediatrician read the orthopedist's notes about the appointment (she is connected to the Children's Hospital computer system) and was also upset (an understatement) with his handling of the appointment... She's already left a message for the orthopedist to call her, and ordered an MRI for R (the orthopedist refused to order an MRI, saying it wasn't necessary.)

Not all the doctors we run into are great, but it's been a long time since we've stumbled upon one THAT bad.

Thankfully M's procedures yesterday went more smoothly. They were also done at Children's Hospital (our home away from home) and took a couple of hours. Because he's still having a lot of hip pain, his orthopedist (a different, much better doctor!) suggested MRI's and arthrograms of each hip the last time M saw him... with the goal of trying to pinpoint the pain and decide on what (if anything) to do. M did well with the procedures. He was pretty stressed earlier in the week, and after R's experience with the orthopedist from hell I almost cancelled the appointment... not wanting anything to do with Children's for awhile... but it all went fine. They had a "child life specialist" come to radiology to help M through the procedure... basically she's just someone who has a head's up about his disabilities, can help him understand what's going to happen, answer questions, and even just hold his hand during the procedure. I decided to wait in the waiting room this time. I've always gone with M for procedures etc. but I wasn't allowed to stay for the arthrogram (radiation exposure) and he's already had numerous MRI's so they aren't scary to him, so I decided he could just handle it himself.  And he did. :)

I'll schedule R's MRI today, and hopefully hear back from M's orthopedist soon about the tests they did yesterday. More hip surgery may be one of the options, it's something the ortho has already mentioned as perhaps being needed. M is stressed about the possibility of more surgery (and honestly, so am I!) and I've told him that unless they have a VERY good reason for surgery, and can virtually guarantee it will help significantly with his pain... we're not doing another major surgery.

Unfortunately, M doesn't have any good options with his hips. More surgery (if that IS an option), or living with daily pain waiting for the hip joints to deteriorate to the point they both need to be replaced. Neither one are great options.

On the bright side though...  I adjusted M's meds a week ago or so and he's doing well... more stable again and without the increase in oculargyration that I was worried the med adjustment would cause.

Also on the bright side... We are going to a concert tonight!! Our church is sponsoring a Matt Mauer concert this evening and we're going. :) It will be the kids first "real" concert and they are so excited... and so am I...I really like Matt Mauer's songs and it will be great to hear him in person.

unsettled

The weather has been so strange the past week or so...  We had six inches of heavy snow on the ground before last week's snow was over, and it's been cold and dreary ever since.

The back pasture should start greening up now... finally... it's been bone dry all spring.

The sun is finally out, but it's very windy.  The front door has blown open twice since the wind picked up... once last night after we'd gone to bed. We woke up to a cold house, but at least we didn't end up with any wild "visitors" that wandered in looking for shelter.

The wind has Murphy in a tizzy... Usually when I go out in the morning he's at the fence nickering to me about his breakfast. This morning he was running wildly around the pasture, twisting, bucking, and scattering the donkeys... slipping in the mud and slowing down to get his balance... then off and running again. He did come to the barn to eat, but stood panting, trembling, and pawing the ground even after he had a feeder full of hay in front of him.

I stayed with him as long as I could this morning, talking to him and reassuring him, but he was still worked up an hour later when R went out and even shied (shy-ed?) away when she went into his stall. She spent some time grooming him and just being with him and he seems calmer now.

I think the wind is unsettling for people as well as animals sometimes... M has been unsettled the past couple of weeks...  having the basement torn up for so long, and all the workers in and out, has been hard for him. I hope the wind doesn't add to it and leave him feeling the human equivalent of Murphy's mood this morning.

a small success

For the past few years M has had spells of oculogyric crisis... It's something that can happen as a side effect to a couple of his meds. These "crises" are scary and painful for him, and before all the trouble with his GI system he took a medication each day to try to prevent them. It was also something I could give him, prn, when it happened, to stop the spasms in his eye muscles.

Unfortunately, since all his GI problems started he's had to stop the side effect medication and has been having oculogyric crises more frequently... lately almost every day. I talked to his pdoc but all he could recommend was trying one of two medications... neither of which M should take because they increase his GI problems.

So... what to do?

I'd been trying to work with M on things he might be able to do, non-medication things, to relax the spasms. But when these crises happen he gets a little panicky and isn't very open or flexible about trying new things.

Last night he had a mild episode of oculogyric spasms and, since he wasn't panicking, I decided to try what I'd been thinking about... I grabbed something for him to visually track and told him to try not to let his eyes roll up as they were trying to do, but to follow my movements, and I slowly, and repeatedly, moved my hand down and to both sides as his eyes tracked along. I was careful not to make any movements that might cause his eyes to go up again... and amazingly, he said he felt better.

After he went to bed the oculogyric spasms came back and I went in and did the same eye movement/exercises with him and... again... it helped... and he was able to get through the crisis without medication or a lot of pain and anxiety!  That is a first! Up until now I've had to give him one of the medications that causes a worsening of his GI problems each time this happens... then watch his GI system closely, often having to give more of one of the GI meds to counteract what I'd given him, or watch him struggle and suffer with the eye spasms.

I'm so excited... if he can learn to manage these spasms without medication it would be HUGE.

And there is other important eye news...

R started complaining a couple of weeks ago of sore eyes and headache. She hadn't been seen by the opthamologist for a while so I took her in, and guess what?

Yes, she needed glasses. She was apprehensive at first and really didn't want them...

..but started to get excited once she'd picked out her frames.

Her glasses were in yesterday... an "everyday" pair and a "good" pair (I've learned it's better to just get two pair at once and have a spare pair around... because they are going to get broken!)

Doesn't she look cute? :)

And finally, if any of you saw the news about the wildfire in our area and were wondering... we got lucky and it didn't impact us too much. The north edge of the fire didn't get closer than about 5 miles from us before the wind shifted and started blowing it the other way. We drove past the fire, and saw the flames and the helicopter making water drops, and were very happy the fire wasn't any closer to us. It was really smokey here yesterday but we were not evacuated. (whew!

Math as entertainment...

Because of the kid's disabilities, structure and predictability are the name of the game at our house...  The days we are home are very structured, we do about the same thing at about the same time each day. This is not as important for R, who can usually manage a more go-with-the-flow kind of day, but it's crucial for M who does not shift gears easily or well.

As M gets older he seems to be getting more easily "stuck" on things. Most of the things he gets stuck on are little things, when we eat lunch, when he does school (and who does school first!), but sometimes his getting stuck leaves the rest of us stuck in a mind numbing routine that's hard to find a way out of... at least without rocking M's boat to the point of causing real problems - which does break up the monotony but can lead to the kind of excitement I'd rather live without.

Late afternoon and evenings have been a rough time for awhile now. M was always tired and unsettled by late afternoon, and I needed to get dinner on and couldn't always give him much attention them. (The crockpot is great, but there are limits to how many times a week you want to eat a crock pot dinner!) After several years of working on it, and much drama and frustration (on both our parts) M has finally settled into a late afternoon "reading time" routine that is working VERY well. It's such a relief to have him settled during a time that has been rough for so long.

Because we don't watch TV in the afternoon/evenings, except very occasionally, it's been hard to figure out what to do with the evenings. I always have a read aloud going and usually read a chapter to two to the kids each evening right before bed, but there is still a lot of time to fill... especially with the longer days lately.  M is not able to just go entertain himself with something, except sometimes with Gameboy, and every evening he wanted to play board games. I really like playing board games... I do... but it was feeling like we were all trapped in some weird time warp with each evening being an exact repeat of the previous one, right down to the words M used to ask us to play a game with him.

So now I'm structuring the evenings too. Sundays, for years, have been "Mom's TV night" where we all settle in front of the TV to watch my favorite show, and the only one I'm wiling to turn the TV on in the evenings to watch (Extreme Home Makeover :) )... so I only had six evenings left to figure out. I turned Monday into "game night"... I make a fun dinner (this week I made big plates of healthy nachos) and we pull out a longish game and we play the game during dinner and sometimes straight through 'til bedtime. Lately we've been enjoying Parcheesi for our game night... R likes it and it able to play it (she often has a hard time with games) so it's our current favorite. Wednesday I turned into "soup night", and if the weather is good enough we take a walk after dinner. Friday is "movie night", we pick a movie for us all to watch together and eat dinner in the family room.

That still leaves three unstructured evenings a week, but that's a lot easier to deal with than seven!

Last night, (unstructured) Tuesday, M was at loose ends... he didn't know what to do with himself and things seemed to be heading downhill quickly... so I told him to run into the classroom and grab his math book... we'd get a lesson done. At first he said no (looking at me like I'd suddenly sprouted horns!) but then the thought of doing his math when Joe was around to watch (and be impressed!) motivated him to get his book out. R wandered in to the room (also looking for something to do, I'm sure) and I sent her for her math book also.  The kids spent 30/45 minutes or so working on the math lessons we hadn't gotten to earlier in the day. M worked happily along, much more settled again with the little bit of structure and R went along because she had no choice... but from the way she watched the clock I'm pretty sure she would have much happier to just go to bed early.

After the kids went to bed I thought briefly of turning one night a week into "math night"... we could all sit around the dining room table doing math... but honestly, that seems really weird... even for me. There is a limit to how far I'm willing to go to structure our days and I think math night might be a ways beyond that limit...

Soup night tonight... M should be more settled today knowing what we are doing this evening.

right now - today - this week

I got up this morning not in the mood to start the day. I've been up a lot the past couple of nights and was tired...and the house was cold... and about the last thing I felt like doing was bundling up and going out to the barn to feed.

A heavy fog was settled over everything and as I left the house I decided to grab my camera (my new one, which I dearly love!) and maybe take a few pictures. I was almost out to the barn before I noticed a whole herd of deer bedded down in the pasture behind the house.

I stopped and took a few pictures and when they started to move away I went into the barn and started my morning barn routine (throw hay, break ice, haul water, rake and shovel manure.. and finish with "hugs" and a little conversation with Murphy, Tucker and Brighty).

As I walked back to the house I played a mental game I play sometimes when the constant demands of caregiving start to wear on me...  It's a pretty simple game, and I thought I'd invite you to play it with me. All you do is imagine your time is entirely your own, you can do anything you'd like with it... no responsibilities, no expectations... what would you do right now, what would you do today, what would you do this week?  I try to keep my plans realistic, something that would really  be possible to do (I never imagine running out and buying a Mercedes or paying off the house!) but that's the only "rule" I follow.

Right now... this is a no-brainer... I'd turn the electric blanket on and get back into bed and sleep (in a quiet house) until I woke up naturally.

Mmmm... a nice toasty bed would feel so good right now.

Today...  I'd laze around for awhile picking a little on the banjo... I have a song I'm trying to pick out, I've got the melody down but have just started working on which runs and slides to put with it. I would eat lays potato chips, washed down by diet Dr Pepper (yeah, I still miss it!) with a little chocolate for dessert. (M is still on a fairly limited diet... can you tell?!) When I got tired of being home, I'd head into Denver and spend a couple of hours in my favorite music store, looking for any new books they might have of banjo music, and keeping my eyes open for a good beginning dulcimer book. I'd also have them pull one of the expensive banjos down off the wall and I'd sit for awhile and play it. I'd stop for dinner on the way home... nothing fancy... maybe  chipotle... a burrito sounds good, or maybe I'd stop for some Indian fry bread. I'd finish up the day with a good book and a cup of tea before going to bed whenever I was tired.

This week... Hmm, a whole week to do whatever I want with...  I think I'd grab the credit card, toss the kids in the car and take off.  We'd head north first, and revisit Mt Rushmore, Crazy Horse, and the Wild Horse Sanctuary. We would only stay in nice motels with pools, the Disney channel, and pay per view movies. M's stomach would be doing well enough that we could eat what we wanted without him getting sick. Once we were tired of So Dakota we'd head east and stop in Greeley for a visit with my cousin MJ... we'd make sure to drive out to Great-Grandpa's homestead while we were there and spend a little time exploring. Then we'd turn the car south and drive down into Kansas to visit my sister. We'd take our time, visiting all the little museums and things we'd see along the way. We'd spend a day or two in Cottonwood Falls, staying up too late talking, before heading west again towards home.

That's it... the end of the game... it's not as good as really doing those things, but it's still pretty fun to think about. :)

 So imagine... no responsibilities, deadlines, expectations... what would you do right now - today - this week?

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.

Psychiatrist, "Concrete" Children, and Other Oddities

Thanks to those who sent good thoughts and prayers in response to my "note to schizophrenia". Please know that my primary emotions in writing that were anger (ANGER!) and frustration at schizophrenia, my ever elusive nemesis... and how much is has taken (stolen) from M and from our family as a whole.

Since the onset of M's sz, back when he was just a small child, our lives have been a series of battles against his symptoms... a never ending war waged to keep M alive and healthy, and to preserve as much of his quality of life as possible.

Sometimes anger helps fuel the fight...

I saw M's pdoc last night and we decided to increase one of M's meds. Before the appointment I'd gone back through my notes for the past few months... looking at new symptoms, M's connection to reality, daily functioning, etc. and it was plain that the past two months have brought a definite worsening in terms of symptoms, connectedness, and functioning. So even though I'm always very reluctant to increase anything... what must be, must be, I suppose.

Our "new" pdoc (he's treated M for about the past year) is a good guy... but seriously quirky... and conversation, at least in my experience, is not his forte. I was pleasantly surprised last night though, that despite kind of an awkward start... the appointment went well, and we seemed to be on the same page.

With M so unstable, school time has gotten more complicated. I never know from day to day, if me telling him it's time to do school is going to set him off or not...

But despite the tension around school, R made me laugh out loud yesterday during spelling...

We've been doing Sequential Spelling this year, so basically each of the kids has a spelling test each day. I'm not going to try to explain the program... it sounds weird but both kids like it and seem to be learning to spell more complex words.

Because of the daily test format, both kids are used to spelling whatever words or short phrases I dictate to them from that day's lesson. I watch them write, and if a word is misspelled they fix it right away, then write it several more times to practice it correctly.

The last word on R's test yesterday was "prettier" and I watched as she spelled "p-r-e-t-t-e-r" , and I said "drat", because she'd left out the "i" and up until then she hadn't misspelled a single word...

Without missing a beat, she carefully wrote "d-r-a-t"...

She's such a concrete thinker, if I say it during a spelling test, it must be a spelling word...

a note to schizophrenia

Schizophrenia,`

you are a thief.

`

You steal my child's rational thoughts,

and replace them with paranoia, panic, confusion and anger.

`

You rob us of our sense of connection to the world...

leaving us isolated behind towering walls of hallucination and delusion.

`

You steal my child's trust in himself,  in his thoughts... and in our love.

`

You traumatize him... and us.

`

You steal our hours and days,

leaving behind only the tattered remnants of what might have been...

~

...had you not brought the hurricane of psychosis with you

to shred our hopes, plans, and sense of well being.

``

Schizophrenia,

you are the lowest of thieves...

you steal the irreplaceable from a child.