Thursday, July 26, 2007

Well.... I've got S again. 

Things aren't looking good this time, I think there might be a real possibility of her ending up back in the (foster care) system. Her foster mom has given the agency that placed S an ultimatum. Do things her way or remove all the kids... including S... tomorrow. 

 I was forwarded an email sent between case workers in this agency, and it doesn't sound like they are willing to make a lot of compromises for this foster mom. So I've been trying to figure out if there is anyway we could take her. The answer, clearly and logically is... NO! 

But... on the other hand, how can I not? Last time she was here she asked me if people might think she's my "real" daughter because we both have brown hair and eyes. Last night she asked if I could be her "step mom" (I suggested it might work better if I was an "Auntie" instead.), and said she has two homes now. Her home in the country (with us) and her other home. (Note to Granny.... you heard none of this here, ok? Please??) 

Things just have to work out in her regular foster home. I know we can't take her (probably....) but it would break my heart if she were tossed back into the system.

I think I'll call social services today and see how much I can find out... (It's so weird to be doing favors for one county's social service agency, while at the same time worrying that a neighboring county's social service agency is going to investigate us. The system is so messed up!) Please keep S in your prayers...

**edited to add**

Look what R and I did this morning... When we got dressed we accidentally ended up dressing in almost exactly the same thing, a white V-neck shirt, denim capris and white socks. R thought it was too funny so I told her I'd take a picture and post it here. 

Here we are!

Tuesday, July 24, 2007

confession...

I have a confession to make. I didn't just write my previous post (slipping beneath the radar). 

I wrote it several weeks ago, then decided I was probably just being cranky and over-reacting to things... so I didn't post it. As it turns out, I wasn't over-reacting.

So.... guess what I did on Sunday? 

Give up? 

I spent most of the day researching, buying and beginning the installation of a video monitoring system for our house. It's not one of those high-tech security systems that fancy houses have... This is a pretty bare bones system,basically just a fancy baby monitor. There are cameras that show certain areas of the house, and audio so you can hear what's going on as well. It comes with a little cell phone sized monitor to carry around with you, so you can see and hear what is going on where the camera is. 

It set me back well over $400. Why would I spend so much money on something like that? Because, once again, there seem to be doubts about whether or not it's possible to care for a child like M, in a home setting. Once again there is a possibility that I'll find our county social service agency knocking on my door, asking me to prove that we're capable of caring for this complex child. 

Last time this happened, I learned that I have to be proactive... to have everything in place to basically "prove my case" before they even knock at the door. So one camera is installed... I'm hoping to get the other one up today. 

I've put one in the family room... can you find it?  

I'm hoping it's pretty discrete, the camera really doesn't blend very well with our "rustic" decor! (For those of you who might be in our home for co-op classes, parties, etc. the camera doesn't keep a record of anything... we can't "watch the film" later or anything. Wouldn't that be creepy?) 

The other camera will be in the hallway outside M's room. 

Sigh... here we go again. 

I'm really ok with the uncertainty of the situation this time though... I'm angry enough not to feel frightened, the way I did the last time went through this, and I don't feel as powerless as I did last time... I know we haven't done anything wrong, and are taking good care of our kids, and this will all work out... ...it just makes me crazy that this kind of thing seems to be a "normal" part of our lives now. (in case you couldn't find the camera, here it is...)

Sunday, July 22, 2007

Slipping beneath the radar

This is probably going to end up being another rant....sorry. This blog will return to it's regular programing soon. I promise... 

I'll start with a rhetorical question.... 

Why is it that many really good parents.... parents who have given their all to their children... are forced to live their lives looking over their shoulder, waiting for social services to come knocking on their door? 

These are not parents who are beating, neglecting, or otherwise abusing their children. These are parents who often have put their lives on hold for their children...setting aside careers, making do with less money, losing touch with both friends and family, to raise a child (or children) with a serious disability. When that disability is a brain difference that manifests itself in extreme behaviors, these parents are burdened not only by the care of their child and the emotional, physical, financial and social costs of that disability... but also with the terribly heavy burden of never knowing when some well meaning (but clueless) professional is going to report them to their county social service agency.

Unfortunately this is the reality (at least in Colorado) for many parents of children with severe developmental delays and/or mental illness. While there is virtually NO support for families raising children who are both developmentally delayed and mentally ill, if the child's behaviors become too extreme the parents are blamed and social services is called in. These parents are made to feel as though they have done something very wrong... doctors, law enforcement personnel, and therapists who are involved during this time of crisis often are quick to unfairly judge the parents. Giving them the message that they (the parent) have caused the crisis, and social service's involvement, by the mistakes they've made in parenting.  
We've been reported to social services once, a couple of years ago. It was after a particularly difficult episode with M, and his pdoc wasn't sure that M didn't need a more intensive level of care (an inpatient unit), for his safety and the safety of the rest of us. She called social services and reported us, thinking it might help "open some doors" to support for us. She made that call right before Christmas, and I spent our first Christmas in this house waiting for them to knock on the door, waiting for some stranger to ask me to prove to them that I could safely care for my children... and, if I didn't convince them, leave with M. It was a really bad way to spend the Christmas season... 

Thankfully they never investigated us... But I've never forgotten the feeling of my life, and the lives on my children, being so within someone else's control. I have three friends right now who are either having to jump through social service's hoops, or are waiting for that knock on the door. 

It shouldn't be this way... Parents who are raising these very challenging children, those children who struggle with the most extreme behaviors, should be valued and supported. They should be provided with appropriate support before the family is in crisis and safety becomes an issue. But they....we.... aren't given support. And many of us spend our days, months, and years feeling as though we are slipping under the radar, spending time and energy trying to avoid detection, rather than spending it on what's really important.... our children.

softball

Yesterday was the kid's first Special Olympics softball tournament. It was fun but HOT! We're all feeling a little toasted today... 

The kids had a great time in spite of the heat... M played third base one game, and catcher the next game. R played left field during both games. 

It was hard getting good pics of the game (through the chain link fence) but I did get a few that aren't too bad... R, batting... She hit it! (no that's not a given, even with a "T".

 

  M on first base, waiting for a hit.

 

  R in the dugout... She was the only girl playing yesterday (there are other girls on the team, they just couldn't make it to the tournament). She looked so small compared to all those big boys!

 

  M playing catcher.  

  R way out in left field. It did get boring out there, but she amused herself by dancing in little circles from time to time.

 

  Two happy, hot, tired kids and their ribbons.

Tuesday, July 17, 2007

I'm taking a break....


...at least for today, from running around the hamster wheel of coordinating M's care.  I feel like I'm getting nowhere but angry and frustrated... so I've decided it's time to give myself a little break. (Just as soon as I'm done venting here...)

Because of the side effects from the meds he takes, M needs a neurologist, a cardiologist, and now it appears he needs a gastroenterologist as well.
He's been having stomach pain, almost daily, for almost two months. I didn't worry about it too much at first, he had no fever, wasn't throwing up, and his appetite was fine. But when it continued I made an appointment with the pediatrician and took him in...

The pediatrician thinks it's reflux and said M has gastritis and esophagitis (inflammation of the stomach and esophagus). There is a possibility that he even has an ulcer. These issues are possibly related to his schizophrenia meds... The pediatrician prescribed prevacid, but then the pdoc said he couldn't take it (at least without getting an EKG done first) because his antipsychotics can increase the risk of QTc prolongation, and I guess prevacid increases that risk too. In addition prevacid can cause constipation... something that is already a big problem with the meds he already takes.

So... no prevacid.

I called the pediatrician's office back, and she said all the meds used to treat reflux have similar side effects, so she didn't know what to do. She thought maybe I should just give M more Tums. (Which do little or nothing for the stomach pain!) She also suggested that possibly M's meds are contributing to this problem and implied that if he weren't taking so many meds this wouldn't be a problem.. (Grrr..... does she not understand that I only give M what he has to have to keep him relatively stable and connected?!)

Since the pediatrician was no help... my next step was to call the GI clinic at the Children's Hospital. The good news is they would be happy to see M, the bad news is their first available appointment isn't until August 30th!

So, here we are... M's stomach is still a mess, but because of his psychiatric symptoms I can't decrease the meds that might (or might not) be causing the problem (which hasn't even really been identified yet!).

I feel an urgency to address the stomach problems before they get even worse, but I feel like I just keep running into dead ends...

So I've decided to take a break, just for today, from all of it...

....it will still be there tomorrow.

Sunday, July 15, 2007

No time to blog...

I've have S again for the past week. Since I wrote the "houseguest" post (see below) two years ago, little has changed. S is still in foster care, still developmentally about 7, still likes to play with toy horses and Barbies. She's older though, 13 now, and because of her behavioral issues needs to be constantly supervised. So for the past week I've done nothing but keep track of her and M (who also needs that constant supervision).

S still breaks my heart... She is in the same foster home she was two years ago, but at times her placement there is precarious. Several times over the past few months her foster mom has talked about telling the department (county social services) they have to move S, that she just isn't willing to care for her any more. After 5+ years in that home, that kind of move would be devastating for S. So I do what I can to keep S from being moved. That's how S ended up at our house for the week.
We had a pretty good week. We took S with us to softball practice, Girl Scouts, etc. and she did school with us. She and R also had plenty of time to play outside with Grant and the goats.

But the garden is weedy, the house is dirty, and the laundry is piled to the ceiling. We only got two days of school done, and our half finished art project has been sitting on the kitchen counter for three days.

I'm tired now... M was seriously thrown off by having her here for so long, and he's having some health problems as well, so it's been an exhausting week.
I'll be back tomorrow or Tuesday (or whenever I dig myself out from under all the work that's piled up!).

Tuesday, July 10, 2007

Rite of passage

Dh has a little SUV that he's been trying to sell.

Yesterday evening it was in a minor accident. It ran into the woodpile.

Hard.

And Dh and I laughed and smiled the rest of the evening about that little wreck.

Why? (Honestly it seems like a strange reaction to me too...)

Because M is the not-too-forward-thinking cause of the wreck. He was sitting in the car and didn't think about what would happen if he took it out of gear... on an incline... facing a woodpile. (Yeah, it made a pretty good crash... luckily the front of the car was already a little dinged up, so any new damage just blends in with the old)

The part that makes us smile is that, for once, M got into trouble doing something that was actually age appropriate!

I'm still grinning... It doesn't take much to make us happy.
~

  Anybody in Colorado interested in a slightly dinged up SUV? 

It runs great....

Sunday, July 8, 2007

other stuff

I feel like all I've been blogging about lately is the drama around S (our little house guest) and M. So..... lest anyone think we are spending all our time sitting around stressing about S, or getting things ready for social services to come knocking on my door to check on M, I thought I'd post about some other things we've been doing. 

We just finished a very cool unit study on spiders. We only spent about a week on it, but we made some very fun lapbooks and learned a lot about spiders. The unit study started accidentally with a large black spider I found on the kitchen window screen. I didn't want him (or her... as it turned out) in my kitchen, so I caught it, and since it was such a big spider I decided to save it to show the kids. One thing kind of led to another and pretty soon we had two mama jumping spiders and two egg sacks, which eventually hatched out about a million cute little baby spiders. (Yes, even baby spiders are cute!) 

Here is R getting up close and personal with a (dead, but very well preserved) funnel web spider. It really was amazing to look at it close up... The spinnerets were very easy to see, as were the tiny claws on the legs. We never could see his eyes though....

 

And here is one of our "crops" of baby spiders.

 

Before S came back we also went to a great pizza making class at Whole Foods. The kids got to make their own crust, fill it up with toppings, then watch as it cooked in the huge pizza oven. Afterwards we sat outside and enjoyed the sunshine and the wonderful pizza. Mmmmm..... 

M and R, ready to start baking--

 

Another exciting thing that happened (although probably only exciting to me!) is we had a load of hay delivered. Since we sort of ended up accidentally getting a horse, I only had enough hay in the barn last year for the goats... so I've been having to buy small loads of hay once a month or so to feed Grant. Hay is very expensive here right now, and I hated having to drive to the feed store (30 minutes away) every few weeks to stuff my minivan full of over-priced hay... I really wanted a load of hay, enough for a year, neatly stacked in my barn. Then, no matter how many blizzards we have this next winter, I'll know I can feed the animals (and don't have to drive through snowdrifts to get to the feed store to do it!) Before I could buy my load of hay though, I had to wait for it to grow... Finally, just a few weeks ago, my neighbor had his fields cut and baled, and I placed my order. Then we had to quickly clean out the barn...

 

That whole underneath area (where Rose is) had been full of a boat, odds and ends of lumber, lawn tools we never use... you name it, it was stuck in that corner of the barn! It took one whole dirty, sweaty, afternoon to empty it out...

 

Here comes our hay! One hundred and fifty bales of timothy...

 

It took him five tries to back that flatbed into our barn...

 

Tossin' and stackin'... We paid three college kids to unload and stack it. They unloaded and stacked all 150 bales, it took them just over an hour... and they charged us $10. each. What a bargain!

 

There it is... a year's worth of hay for one horse and two goats. Actually that's almost a year's worth, it wouldn't all fit in that area so the last 25 bales are stacked in the feedroom. ......let it snow, let it snow, let it snow.... 

S went back to her foster home today. I'm not sure that it will last, but things seem to have calmed down again... at least for the time being. Foster mom backed down from her ultimatum to social services (thank goodness) but things are still very precarious for S. Fortunately her most recent visit with us went well, M didn't destabilize as badly as he did the last time she was here and R enjoyed having someone to play dolls and horses with. It will be very nice to be back to just two kids again though... 

I'll have to finish this later... it's getting late and I'm worn out!

Saturday, July 7, 2007

Side effects....

....and other seemingly unavoidable land mines of schizophrenia

Before M's schizophrenia I had no idea how complicated and confusing medication management for mental illness can be. I naively (stupidly) thought it was a fairly simple process... The pdoc prescribes a medication (or medications) and the person gets better, and stays better as long as they take their meds.

Well... the past five years of M's illness have taught me differently. (Schizophrenia is nothing if not a good teacher... You might not want to learn the lessons it teaches, but like all powerful teachers it can teach even the most reluctant student!) For us, finding the right mix of meds to treat the most problematic symptoms has been a very lengthy (years long!) and complicated process (and the minor symptoms we don't even try to treat with meds).

One of the reasons it's been so complicated is because certain schizophrenia meds can't be given with other psychotropic meds so, for example, even when M's anxiety is through the roof... he can't take an anti-anxiety medication. Meds that are used to treat psychosis can make obsessive behaviors worse. Meds that would help with the increased obsessive behaviors can trigger mood problems. Meds that are given for mood problems carry a whole different set of side effect issues sometimes even including an increase in psychosis.

It seems like a crazy spiral sometimes...

This means that, at least for us, it's a constant balancing act. Trying to choose the "least bad" of the meds, figuring out which symptoms HAVE to be treated, and which ones can be ignored. Which side effects CAN'T be tolerated, and which ones M is just going to have to live with.

Unfortunately, we're back to the side effects being so bad that they are causing almost as many problems as the symptoms themselves! Currently the side effects M deals with, uncomplainingly I might add, are tachycardia (rapid heart rate), borderline hypertension, drooling, sedation (sleeping 13-14 hours out of every 24), obsessive behaviors, speech impairment (connected to past neurotoxicity, never resolved), heartburn, stomachaches and other digestive problems, increased appetite, metabolic changes (he gains weight very easily), and swallowing issues (probably connected to the neurotoxicity that ruined his speech). There are probably more.. those are just the ones that come quickly to mind.

It's a measure of the severity of his schizophrenia that all those side effects, combined, aren't as bad as the illness itself...

So I feel like I'm stuck between a rock and a hard place... Decrease the meds and the side effect related problems get better, but the psychosis gets worse. We can't risk that, of course... in fact I should probably be giving him more to help with the psychosis. But then the side effects will be even more out of control.

Sigh.... what do to.

I guess as long as M is fairly stable I won't change anything... But he's had a rough week, and I don't like the feeling of not being able to give a prn because he's already struggling so much with side effects.

This is a old problem, one I've blogged about before (probably several times!). I'm just thinking (um... writing) out loud. Sometimes writing it out helps to organize my thoughts... Sometimes (like today) it just makes me cranky.

I think it's time to go work in the garden, maybe a little outside work will clear my head...

Thursday, July 5, 2007

Independence Day

I hadn't made any plans yesterday for celebrating the 4th... I was kind of half thinking about having a quiet day at home, cooking some steaks on the grill for dinner and wandering down to town afterwards to watch the fireworks display. But then our neighbors across the street invited us over for a barbecue and fireworks, so yesterday afternoon we happily headed up the hill to their house. 

I'm embarrassed to admit we drove.... yes, right across the street. Dh was not having a good day and the walk would have been difficult for him. 

(I'm posting this picture in our defense... the line shows the way to our neighbors. The end of their driveway is actually so far down the road that I couldn't get it in the picture... but you get the idea, it's a pretty long walk....especially for dh)

 

It was such a nice evening! R played with their kids, jumping on the trampoline... seeing who could jump the highest and do the best "trick"... and M hung around with the grown-ups. 

As it started getting dark the dad brought out the fireworks... It was amazing, he had a whole big basket full of fireworks. Everything from little poppers, noisemakers and sparklers, to this huge "city of doom" tower kind of thing. We never buy fireworks so the kids were a little apprehensive at first but pretty quickly warmed up to the fun of waving sparklers through the dark, and screaming when the noisemakers went off.

 

We stayed waaaaaaaay too late, but finally our neighbor lit the "city of doom" (while M hid himself in the back of their garage... for safety!), and we ooo-ed and aaa-ed over the different colored lights shooting up into the sky.

 

After lots of good-byes, kids begging to stay just a little longer, and good natured jokes about our "long" drive ("watch out for drunk drivers!") we finally headed home again.

 

Happy (belated) 4th of July everyone!

Tuesday, July 3, 2007

Colorado summer part 2


Colorado Weather
Part 2

Even the hardest winter though (see previous post), must eventually give way to spring.
The first wildflowers push up through the snow.


And soon the whole prairie is blooming...


Even the yuccas dot the pasture with blooms


while serving as homes for R's favorite insect friends.


The sky seems huge and impossibly blue,


and the prairie grasses grow tall and blow in the wind.


The grasses grow so tall that they almost swallow up a child...



...and you can easily lose a large dog in them.




The long grass provides shelter for the wild babies that arrive as spring turns to summer,


and protects them as they make their first trips away from the safety of their shady bush.


The prairie is beautiful during the spring and summer and we spend a lot of time enjoying the sunshine, working in the garden, playing with the animals....


...and eagerly looking forward to the first snow in the fall!