Saturday, August 26, 2006

Jewels from the garden~ (canning tomatoes)

We have had an overabundance of tomatoes this year from the garden. We've given them away, and eaten them in salads, on burgers, straight from the garden with a little salt and pepper (Mmm...) and we still haven't been able to eat them as fast as they are ripening. So I decided it was time to learn how to can...

R and I learned together (I'd never canned before) and we had a lovely, messy, morning canning tomatoes together. Here is R getting the hang of peeling the tomatoes after they've been blanched.

 

She was very careful with the sharp knife, and between the two of us it didn't take too long to get them all peeled.



 Then we cut the tomatoes into quarters, put them in the canning jars, and added a little salt and lemon juice.

 

Finally... an hour and a half after we started, the cans were in the pot ready to be "processed".



 Here's part of the mess we made. (You can't see the tomato juice dripping down the dishwasher, or the bits of tomato peel all over the floor!) The peppers are out because I made one jar of tomatoes and green chilies with some fresh roasted Hatch chilies one of our big girls brought for M's birthday.

 

After 40 minutes of sitting in the pot of gently boiling water, our tomatoes were done! Aren't they beautiful? I'm guessing in another week or so, we'll be doing this all over again... I still have dozens of green tomatoes on the vine.

 

Thank you everyone for the good thoughts, prayers, and understanding. With or without M's sz, life goes on and sometimes a measure of peace comes from the comforting, productive, everyday tasks of home.

Friday, August 25, 2006

searching for the impossible balance

I don't know how to do this...

How do I keep the kids and myself connected and part of the world, when M is so unstable that taking him out means putting us (and everyone else) through all the difficult behaviors his psychosis brings with it?

How do I find the supports we need to raise M, when every phone call I make ends with someone telling me that they don't have the expertise to work with M?

How do I keep from taking my exhaustion, frustration, and anger out on M and everyone else, when it's the "system" I'm angry with?

How do I find a balance in life, keeping M's schizophrenia from completely taking over the family, leaving us isolated from the "real" world....while at the same time respecting the rights of others?

When I look at the picture of M in my last post, I see the person he could have been. You don't see the psychosis in that picture, you don't see the drooling, or the zoned out look he often gets. You don't see his anger and confusion when the hallucinations are too intense to ignore... or the chaos that begins when he stops believing that they aren't real.

His pdoc wants me to significantly increase one of his meds, starting today. As it is he often appears drugged, and at times can't even think through the haze surrounding his brain. He no longer even makes an attempt to stop the near constant drooling, his speech is unintelligible and his intense hunger often rules the house. (All side effect related issues)

I agree that he's too unstable right now... we need to do something. But like so many other things in his life, there seems to be no balance. This latest increase may very well leave him too sedated to do school...

Schizophrenia sucks.

Thursday, August 24, 2006

bittersweet

A friend took this picture of M on his birthday, and I just had to share it here.



 

 He's growing up, isn't he?

school stuff

Thanks to everyone for the birthday wishes for M! (and for kindly not pointing out all the typos that post... I should know better than to write quickly, when I'm tired, and not proofread carefully!!)

M had a great day on his birthday. His party was wonderful... lots of good food and special people. Despite being so excited that he didn't sleep much the night before, he was calm on his birthday and really seemed to enjoy the day. What a blessing... I always feel sad when he's so unstable that he's not able to enjoy holidays or other special days.

Unfortunately his birthday "high" seems to have worn off, and he's getting very irritable and edgy again. It's hard to imagine living like this for the next 5-10 years... but it's even harder to imagine what will happen to M when he isn't able to live here anymore. So, I guess we'll just keep doing what we're doing and trust that it will all work out.

We've settled into what I think is going to be a very good, and workable, school routine and I'm excited about it.

On Monday through Wednesday the kids work pretty hard... They do a spelling page each day, and I split up the week's lessons of math and language arts (Making Math Meaningful and Language Arts Through Literature) so that they get the majority of the work done on Monday and Tuesday, with Wednesday being an easier day.

Although we are no longer using Saxon Math, I've kept their idea of a "meeting" to start each math lesson. During the meeting (which is just about 10 minutes long) each of the kids works on calendar and time skills, sequencing, reviewing skills they've already learned and counting money. They each have a "meeting book" that I made, using materials from Saxon Math, and this time seems to be a crucial part of the lesson, helping them to hold on a little better to the material they've already learned.
By Thursday all they have left is a page of spelling, and whatever we didn't get done in math and language arts (usually very little). We are reading a chapter from our read-aloud book each day, and when my Story of the World CD's get here, we'll add that in as well. (Listening to the chapter during the early part of the week, and doing some of the activities during the latter part of the week)

By Friday all that's left is a spelling test and our "tea time" activities. Friday has become my favorite day of the school week... the kids and I really love tea time, and the unstructured learning that goes on then.
Each Friday, the kids get to cook something... Following a recipe (or directions on a box) is wonderful for sequencing, reading comprehension, and attention... not to mention math and science skills! Either before or after they cook, we have tea together and I give each of the kids a poem to illustrate and then share with the other one. The past few weeks they've gotten limericks. They've really enjoyed the funny ones I've picked out, and we've also talked about the structure of a limerick. This week they're going to write their own limericks to illustrate and put in their poetry books.

Last week we also started a very informal lesson about roman numerals. R is reading a book that has the chapters labeled with roman numerals, and was having a hard time knowing which chapter she was on... So while we drank tea we talked about the pattern of roman numerals, and both kids seemed to figure it out pretty quickly and have fun with it. (and now R can usually figure out which chapter she's on in her book!)

We've also been talking about money on Fridays. I've started giving each of the kids an allowance, and each week they put some away to spend, some away to save, and some away to donate. (We just use business size envelopes for the different categories) When they have at least $10. in their "spend" envelope, they can spend it. When they have $20. in their donate envelope they can choose a charity (which will be another great Friday lesson) and donate the money. M has already decided he is donating his to schizophrenia research. The "save" money will go into their savings accounts. R is saving for a horse...no surprise there! :) Kids like M and R, with FASD, tend to have LOTS of trouble with money... it's just too abstract for them to understand well, and because they struggle so much with cause and effect thinking they often don't see the reasons for good money habits. I'm hoping that by starting young, and teaching them a very structured, concrete money plan, I can give them "tools" for when they are older and begin to earn their own money.

And finally, I'm trying to include time for art on Friday... The kids draw a lot during the week (especially R, who draws all the time) but I'm trying to have a different kind of art project planned for Fridays... something fun that they wouldn't necessarily do on their own.

We haven't taken any nature walks the past few weeks, that's something I need to add back into our week. (Probably during the early part of the week, when the kids are working hard at structured lessons and could really use the time to recharge) I was pleased though that M took a nature walk without R and I the other day (thought of it himself!), and came back with a new entry in his nature journal.

So that's our schedule, and I think it's a good one. Both kids seem happy with it, and even on our long days, Monday and Tuesday, they are each only having to do sit down work for (at most) a couple of hours total (we usually break up school time with a snack!).

Better go, the sun is up and I need to get moving!

Saturday, August 19, 2006

There's a birthday cake in the oven...

...and gifts hidden under the bed.

 Tomorrow is M's 14th birthday.

 Last year on R's birthday I wrote a little about her life... about how much she has overcome, what an awesome kid she is, and how very proud I am to be her mom. I thought it was only right that I spend this evening, as the house slowly fills with the warm, sweet smell of "red velvet" cake (thanks Duncan Hines!) writing about M. I'll try not to write a book, but it's been an interesting 14 years...so this might take awhile.

 M was our second foster baby. We got him when he was just 7 months old. Our first baby stayed an entire year, and it broke our hearts to lose her, but we really believed in what we were doing, and so we got the nursery ready and just a few weeks after she left, M came to live with us.

 M was born a month early, weighing just a little over 5 lbs. Before he was a month old, he was back in the hospital with pneumonia. His first seven months he bounced from place to place. Birthmom was homeless, birthdad was bad news (and absent) and BM (birthmom) would leave M and his three older siblings with just about anyone, sometimes for days at a time. (She'd promise to be back in an hour, and drop out of sight) The older siblings remember abuse, M was too young to remember of course, but he was obviously neglected. BM tried to take care of him (when she was around) but was herself a product of the foster care system, and an extremely dysfunctional family, and really had no idea at all about how to take care of a child.

 At 7 months he couldn't roll over (either way) or even begin to support himself sitting. His body was tiny, about the size my birth daughter's had been at about 6 weeks of age, and his head looked way to large for his body. I worried about hydrocephalus but the pediatrician explained that M was just malnourished. He'd been fed enough (thankfully) for his brain to grow, but not enough for his body to keep up. BM's idea of good infant nutrition was Strawberry Nestle's Quik poured into a bottle. His eardrums were scarred from numerous untreated ear infections, and he was so dirty that it took several baths to get him clean again. He wasn't able to digest able to digest regular formula (he vomited everything up!) and eventually needed a "predigested" formula. (Which was gray and smelled like chemicals! No wonder the kid has food issues now!!)

 He was such a hard baby. He cried for hours at a time, several nights a week. This wasn't just normal infant fussiness, I already had lots of experience with tired, colicky babies. No this was much worse... M would literally scream for hour after hour after hour during the night. Nothing would calm him. I would walk the floor with him, change him, massage him, bathe him, lay with him... and sometimes cry with him... night after night. Many nights I loaded him into the car and drove aimlessly around the neighborhood... hoping the car would eventually lull him to sleep. When he screamed his body would get completely stiff, and his eyes would be just blank. He'd no longer recognize us during those spells, and it was impossible to reach him. Those screaming spells lasted until he was almost 2.

 There were other issues as well. He could work himself into a frenzy if his bottle was delayed by even a minute (I slept with a bottle for him on my nightstand... knowing I wouldn't have time to run to the kitchen to get it before he'd be screaming so hard I couldn't calm him). He was hypersensitive to lights, sounds, smells, tastes, and touch and even the sound of a car driving up the street at night would wake him up and start the screaming again.

 Those first years were rough in many ways, but he was a sunny little guy (when he wasn't screaming...) and although we had no plans to adopt, somewhere along the line we fell in love with him. Some time during the endless nights of trying to calm him, the many runs to the ER sure he must be in pain, the countless illnesses. and the constant worry of how to get enough calories into him for him to grow... he became our child.

 BM left the state shortly after he was placed with us, and BD wasn't in the picture... so M was on his own by the time he was 9 months old. When we were asked if we wanted to adopt him, the answer was an immediate "YES!". He was 3 1/2 before the adoption was finally complete. ~

The years since that naive and optimistic yes have been filled with evaluations, diagnoses, and tears. But they've also been full to overflowing with lots of love hope, joy, milestones, beating odds, good friends, strong faith, and a few truly amazing physicians who love as well as they doctor.

 M has been my education. From him I've learned the incredible strength of the human spirit. He's suffered with hallucinations for at least five years now, and yet he still finds joy in life. He never complains about the miserable side effects of the meds he has to take, and he's never cried out in anger or anguish at all that schizophrenia has taken from him.

 From M I learned that we are all just people first, regardless of whether we have a "disability" or not.. and I've learned that "different" isn't bad or good. It's just different. He's taught me about unconditional love, and forgiveness. He's taught me about hope, about never giving up, and about giving to others, even when you are struggling yourself with huge challenges. He's taught me to never ever give up, and that even impossible situations are possible sometimes. He's taught me that I'm a better, and worse, person then I thought I was. And he's taught me that life is full of miracles, if we only open up our eyes to see them.

 M's BM's drinking during her pregnancy with him has damaged his brain, and schizophrenia undoubtedly has damaged it more... but neither of those things have damaged his heart or his spirit. He's truly an incredible person... and I'm very blessed.

 This is M at 3, right before the adoption was final. (The red splotches on his face aren't in the original photo, but showed up after being scanned)






And here he is now, meandering across the pasture with his nephew.


Happy Birthday, big guy... 

Thursday, August 17, 2006

Our visit to the "dark side"

First let me state the I don't think all public schools are terrible, and I know there are some good and dedicated public school teachers out there. I know homeschooling isn't for everyone, but I do count my blessings every day for being able to teach my kids at home and know, without question, that this is the best place for them to be.

So... that being said... I have to confess that I spent part of yesterday afternoon meeting with the director of "Instructional Support Services" (special ed) for the school district we live in, and came right out and asked her what they would do with M if I decided to enroll him in public school.

No... I haven't totally lost my mind.

M's pdoc has been strongly suggesting that M needs a "program"... a structured, out of the home educational setting of some type. There seems to be very few kids with schizophrenia being homeschooled. There are very few children with schizophrenia to start with (1 in 40,000 the onset is usually during adolescence or young adulthood) and homeschooling a child with a major mental illness is something that just doesn't seem to be done very often.

I'm sure that M is better off at home, and I've been telling the pdoc that for years. But the longer we homeschool the more I lose touch with what is going on in public schools, and what programs might be available for someone like M. So I decided I couldn't very well tell the pdoc that home is better when I don't have any current information about what it's better than! (forgive me if that sentence doesn't make sense... It makes sense to me, but I'm not sure how clearly I'm thinking these days!)

So thanks to a good friend who knows people in the district, yesterday afternoon I dressed in my "professional" clothes and visited the "dark side" for a meeting.

When I left that meeting I felt light as a feather, and with absolutely no question in my mind that homeschooling is the best possible educational plan for M (and R too!) and with a lot of information to share with the pdoc next time she brings it up, about the benefits (using the word loosely) of a "real program".

Here's what I learned. If I decided to send M to school, we would start at our neighborhood school getting M assessed. This would be a lengthy (and difficult process) as they would want to evaluate his academic, communication, social, emotional, occupational, and physical progress. (and probably a few others that I've forgotten!) Our neighborhood school (since we live in the country) is probably 7-10 miles away... about a half hour drive. (Can you imagine how much longer that would be on a school bus?!) It's a huge middle school with a very big enrollment. Even the "director" we spoke to said that it would probably be very difficult for M to go into that type of a setting. But we could try him in that school (shudder shudder... how in the world would they be able to keep him safe?!) or we could send him to another school in the district just for middle and high schoolers with significant needs. (This school is at least 15-20 miles away!) In that school he would likely be placed in a class for kids with a dual diagnosis (developmentally delayed and mentally ill). The class is small (5-6 kids) and a friend who has observed that class said that it appears that very little academics goes on there. The room she was shown as the classroom had NO books... it was stripped down, bare bones, and while she was observing she saw no academic instruction going on. That's the room M would be in.

The director was quick to point out that if he was capable of it, he could take some classes on the "other side" of the school. One side of the school houses the program for dually diagnosed kids, the other side is for kids with severe emotional or behavioral disturbances. Sooo.... if M is bright enough he can spend a few hours each day with kids with serious behavioral issues. Hmmm... doesn't sound like a great plan to me. Kids (like M) with FASD are extremely vulnerable to peer influences. He's basically 14 going on 7, and they would toss him in with behaviorally disturbed teens?! In addition, he would not be spending any time during the day with typical kids. None at all.

Who in their right mind would think this is the way to educate a extremely emotionally fragile, unstable, vulnerable child like M?? Or any child for that matter?!

I got home from the meeting and gave my big, sweaty (stinky), pimply, charming, frustrating, kind, respectful (and psychotic) 14 yo a hug.

What a blessing it is to be able to teach my kids at home... there's nothing like a visit to the dark side to make you appreciate the many joys of homeschooling!

(Yeah, I know I said things are too crazy right now for me to have time to blog, but I ended up having some quiet minutes today and I've missed my blog...so here I am!)

We're still here...

Things here are still very unsettled, and M is still very unstable. I'm sorry I haven't been keeping up well with other people's blogs (or my own!). I've been searching for more support for M and might have actually found something! (I write about it later, when I know more what's going on)

As soon as things settle down a little, I'll be back...

Wednesday, August 9, 2006

...deeeeeeep breeath....

After two weeks of stress and chaos, this morning it feels like I can finally take a deep breath and relax for a minute.

I'm not sure what is different...the situation here at home hasn't changed. M is still extremely unstable and volatile and R is still unhappy and irritable and struggling with more OCD symptoms again. I think the difference must be in me.

I looked out the window this morning and couldn't help but be thankful for the beautiful sunrise, and the gift of the nature all around me. I stepped out the front door.. and the air smelled so fresh and almost cleansing somehow... that I had to stop for a minute and just breath it in. When I opened up the barn to feed the goats, the rich smell of the feed, hay, goats (and goat manure!) smelled good, and real... and I couldn't help staying out there for an extra few minutes petting our "girls" and watching their funny wake-up habits. Walking back to the house, I couldn't help noticing (and appreciating) that our big garden is absolutely overflowing with pumpkin and zucchini vines, flowers, zucchinis, and tiny yellow pumpkins.

It seemed like a good morning to bake... so now the house smells like our favorite banana/chocolate chip muffins. There is a full basket of warm muffins on the counter, and bread rising next to the stove. (So the house will smell even better later...)

M slept in a little this morning, and has been calm for the hour or so that he's been awake. That in itself is a tremendous blessing.

Yesterday M was edgy, unsettled and restless all day. He never settled at anything purposeful, except for the little bit of school he was able to do. He wandered through the house, opened and closed the frig, and picked at R and the dog whenever they were around. His voices were bad yesterday. They never seemed to give him a minute of peace.

This illness causes him a lot of pain, both mental and physical... yesterday was a painful day.

This latest rough spell has lasted a long time... He's so unstable that I'm never sure when I wake up in the morning, if he's going to make it through the day without a panicky trip to the ER.

M's pdoc told me once that when a child is admitted into the psych unit, it's usually a time of crisis for the family.. and change often comes from it. M hasn't been admitted, but it's still been a time of crisis for us, and the past two weeks have been a good reminder to me that schizophrenia is too big to manage on our own... and I've been looking more support.

The incredible thing to me is that M isn't eligible for any public programs. His IQ is too high to qualify for DD services (developmental disability) despite the fact that he has fetal alcohol (which IS a developmental disability). Our county mental health services won't provide any services to him either. They have a rule that they won't provide any services, if they can't provide ALL his services. (Which would mean the kids could no longer see the psychiatrist they love and trust, and have seen for almost 5 years.)

Our insurance will pay for in home health care, so I called every company in the area... but none of them provide the kind of services we need.

Our insurance will also pay for a private psychologist, and I've called every one in our area and most say they aren't willing/able to provide support for a child with such severe mental illness. I did find one who felt she had the expertise to work with us... We talked for a long time... asking each other questions. I asked if she'd ever worked with children with psychotic disorders... and she said no. She said she'd treated a client with adult onset schizophrenia once... and thought it was probably about the same as childhood onset. (Hmmm... starting to question her level of expertise). I asked if she'd ever worked with kids with FAS. She said no... but FAS was just like ADD/ADHD wasn't it? (Ohhh... starting to have serious concerns about her abilities) Finally, after asking a few questions about our family... and learning that dh has a chronic illness...she volunteered that it sounds like we have problems in our family dynamics and started wondering (out loud) about how these "problems" must surely be contributing to M's schizophrenia. (RED ALERT, RED ALERT!! Alarm bells going off!!! Oh NO, I have stumbled upon a "blame it all on the parents" psychologist) I nicely let her know that I didn't think she would be a good fit with our family... but thank you anyway.

All those years working in the field of FAS finally paid off though... I called a friend I used to work with, a psychologist currently teaching at university in another state. I ran the situation by her and she had some good insights about dealing with the violence, and some good suggestions about getting through this rough spell. I still need to find a psychologist for M, but she did help a lot.

Well... this post has rambled all over the place.. I guess it's time to pull it back to where it started.

We are staying close to home for the rest of the day... In a minute I'm going to punch down my bread dough and make it into loaves. Then I'll go out and give Rose (the goat) her shot... and probably weed the garden a little as long as I'm out there. The grass needs cutting, and once it's done I'll probably indulge my (sub-clinical) OCD and trim it up nicely and pull all the tiny weeds from between the paving stones. And then I'll sit on the porch, enjoying a frosty diet Dr Pepper, and admiring my work.

It's going to be a good day around here...despite M's schizophrenia.

Friday, August 4, 2006

My daughter....

...took this picture of my grandson J. He is watching his favorite "TV" show... (the breadmaker :))

 It was such a cute picture I just had to share...