Caring Minds

I found this article (I've linked to the article I posted below) in the Victoria Times Colonist and thought it was really very good.

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Caring Minds

Learning to cope with the mental illness of a loved one

Jim Gibson, Times Colonist

  Published: Monday, April 30, 2007 

Living with someone who is mentally ill is a bit like that cliche scene in teen horror flicks, according to Pam Edwards whose sister and late husband were diagnosed with schizophrenia. The foxy heroine finally escapes to her car -- breathes a sigh of relief that the chase is over -- when suddenly from the back seat her masked pursuer hovers. The credits roll. A sequel is likely.

There are only periodic escapes -- or lulls between the psychotic storms -- for many family, friends and colleagues of those with a mental illness. For them, it's an uneasy time-out.

"They feel like they're walking on egg shells," says social worker Wendy Brooks, who, at the Victoria branch of the B.C. Schizophrenia Society, counsels families living with any type of mental illness. Initially, families have no sense of what to do, Brooks says. They also worry about doing something to spark another psychotic episode. What's happening is new for them, says Liam McEnery, executive director of the Victoria Mental Health Association. They're confronting something they've likely only heard about in the media. They don't know what to expect. "What's going to happen to my child or spouse? Are they ever going to come back," they ask. The answers don't overflow with optimism. Linked with their concern, according to Brooks, is "a monumental sense of grief," something retired teacher Barb Taylor understands after losing the outgoing son she once knew to a mental illness. "You grapple with the feeling that who they are now is someone different," says Taylor, whose 28-year-old son Morgan was diagnosed with schizophrenia five years ago. 

Coupled with this is a grieving for what Brooks calls "their loss of dreams," often their own as well as those of the ill spouse or child. "I went through grieving the loss of life I thought I was going to have," says Edwards, the association's employment program co-ordinator. "The life I have now is not the one I thought."

But long before any grieving, family members have to acknowledge something is wrong. Many, says Brooks, dismiss what is happening, for example, to their teenager as just "the sturm und drang (turmoil) of being adolescent." Most lay people are not attuned to the signs of a mental illness. Besides, the family member might not willingly disclose, for example, that they are hearing voices, Edwards says. Basically, there is a disconnect from reality -- behaviour not seen before. What form this takes is as different as the individuals themselves, professionals say. 

Denial is what restrains many families, according to Taylor. They can't believe something so wrapped in social stigma has found its way into their family. "Nobody wants to pony up to that one," she says. Instead, people would prefer any other dire diagnosis -- "Give me something people will feel compassion for or sympathy," she parrots an initial response. Society is not ready to acknowledge mental illness the way it does diabetes or cancer, McEnery says. Edwards illustrates this by comparing the community reaction to a teen suicide to another teen dying from cancer. There is an outpouring of sympathy for the cancer death, while "people back away" from acknowledging the teen suicide. 

The pervasive fear that the mentally ill are unpleasant and out-of-control even hinders families needing respite care. "It's hard to get someone to come in. They're fearful," Edwards says. 

Taylor's art-student son admitted having problems with the death of a friend. However, he refused her urging to seek help. Months later, the once-social young man had isolated himself, overridden with dark thoughts. His friends were concerned. 

His diagnosis came weeks later. Taylor and family had taken him to Royal Jubilee emergency room, where eventually he was transferred to the Eric Martin Pavilion. His family was not allowed to accompany him there, but watched -- devastated -- as he was escorted away by two security guards. 

What Taylor deemed "a lifesaver" was the 12-week course she took for families given by the schizophrenia society. "You learn A to Z about mental illness, what it looks like, what to expect, how to handle the (individual) and other family members," says Taylor. She now co-leads the course. Despite what she gleaned from the sessions, Taylor still found negotiating the bureaucracy of mental illness overwhelming. "I thought there would be a plan, something in place, and I'd walk along and be part of it. "I knew what I needed. I was told over and over that it was in place" says Taylor, who found otherwise. "If we wanted to get Morgan up and running, we'd have to do it ourselves." This hasn't been easy even for a family with their advocacy skills and resources. "If we're just hanging on by the skin of our teeth, I can't imagine what it's like for others," says Taylor. 

What consistently impresses Brooks is the strength shown by families dealing with a mental illness. She sees them as much stronger than they think they are.

"In a crisis, it's hard to see that you possess strength," she says.

© Times Colonist (Victoria) 2007

I've decided that for me the key to blogging is caffeine. 

I woke up this morning at the regular time (after being up with R again last night... but more about that later), and sat down at the computer to finish a blog entry I'd started last night. As I sat there, staring blankly at the computer screen I realized my brain just wasn't moving fast enough to write anything that made sense, so instead I went to the kitchen and made myself a nice warm chai tea latte.

It's now 40 minutes later and my latte is almost gone, I've talked to the vet (more about that later too), straightened up a little, and my brain seems to be humming along pretty well. I might take a lot of caffeine to keep me moving through the day though... R isn't sleeping, and hasn't been sleeping for over a week. (yawn....) I recently stopped the medication she's taken for years, and this is the result. 

We stopped the medication, even though it really helped her in a number of ways, because they've recently discovered that this med. is associated with a much higher risk of diabetes. R is already at high risk for diabetes because of a metabolic syndrome her birthmom has (and R may have inherited... although we probably won't know for sure about that for a few more years). As I thought about the risk of diabetes, and what that would mean for R, I knew I had to stop the medication and deal with whatever problems cropped up. Diabetes can be a devastating disease for anyone, but for someone with a developmental disability it would be so much harder. Even as an adult it's unlikely that R would be able to monitor her own diet for example, or check her blood sugar, or even recognize the signs that her blood sugar is way off. So the med had to go... and now R isn't sleeping. 

The pdoc and the pediatrician have totally different ideas of how to treat the sleep issues, so for right now I'm just giving her melatonin which does help a little to get her to sleep. Unfortunately she's up in the middle of the night for 1-3 hours at a time (and I am too of course!) so it's likely to take a lot of caffeine (and maybe a nap!) to get me through today. 

The vet I spoke to this morning is our equine vet (we also have a regular livestock vet for the goats, and a small animal vet for the dogs!) and I was so happy he finally had a minute to call me back... we've been worried about Grant. Grant has always favored one of his front legs, sometimes he'll limp a little on it, sometimes it just seems stiff. Recently he started limping badly on that leg... at times not even wanting to put his hoof down. We kept checking his hooves, but didn't see anything, so we called the farrier to come out and trim his hooves... hoping that would help. I also had R stop riding. 

The farrier came out and said Grant might have an abscess in his hoof and I needed to get the vet out ASAP. (yikes! just a little bit of panic thinking that R is going to fall apart if anything happens to that horse!) I've been on pins and needles for days, waiting for the vet to call back... The vet said he isn't concerned though... from what I've told him he doesn't think it's an abscess, and since Grant stopped limping once his hooves were trimmed he thinks it might just have been a bruise and trimming the hooves helped remove a spot that was keeping it sore. So R will be back on Grant today, and we're supposed to just watch him and see how he does. 

Whew, what a relief...

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Yesterday was a fun day... In the morning we went to a great co-op class through our homeschool group. The class was all about playground games. M didn't participate much, but R got lots of jump rope time in and learned how to "jump in"... We also learned clapping games and R loves the "Miss Mary Mack" clapping game so much that she wants to replace our regular bedtime song (which I sing to her then she sings to me) with it. That might make for a lively bedtime, but that's ok... it's not like she's sleeping anyway! :) In the afternoon we went to town just to get some yellow light bulbs for R's room... (Which is a long story involving lots of migrating moths, but that will have to wait for another time) While I was there I decided to treat myself to just one thing from the garden center... Other people might get carried away shopping (or gambling!) but my downfall is gardening. I'd been doing really well lately... I'd kept myself out of the garden center except to pick up some tomato and pepper plants for my kitchen garden, and some seed packets. 

I like growing vegetables, but I really LOVE growing flowers. Before we moved I loved going to the nursery several times each spring and summer and picking out new flowers to add to my flower gardens. The kids even know to steer me the other way when, after driving to Lowes or Home Depot for just one little thing, I catch sight of the flowers and tell them I'm only going to look "for a minute". 

Well they weren't quick enough yesterday and I ended up with a handy-dandy little cultivator for the big garden, and.... a whole bunch of new perennials for my sad little flower garden out front. I was so excited... there is nothing like driving home in a car scented by the wonderful smell of flowers and dirt! 

I bought some Sweet William because they are so cute and remind me of the old house (they were one of the first things I planted in my main flower garden there) I also bought several large coneflower plants (echinacea). I already have some purple coneflowers that I planted right after we moved in, the ones I bought yesterday are yellow coneflowers and should be just beautiful. Then I bought some small flowering evergreen shrubs... some red spirea, and some chinese aster. 

 I spent too much money, but had such a good time planting them and will enjoy them (hopefully! if the deer don't eat them) for years to come. I might have to go back today to get some more Sweet William just to fill in some empty spots... and then I'm done. (I think....)

Why are some people like this?!

This may be a rhetorical question, but I'm asking it anyway... 

Here's the background.... When M was a little boy, most people didn't understand right away that he had a disability. This was before the schizophrenia and he seemed (most of the time... LOL) to be a bright, pretty typical little boy. I got used to the disapproving stares and unwanted advice I got when he would act NOT so typically in the store or other public places... and I could really kind of understand why I would get those looks and comments. Because he looked, and often acted, so "normal" only the people who knew us knew that he had FASD... so his behavior was seen as willful, not a reflection of his disability. 

Fast forward 10 years... M is now almost 15, and it's glaringly obvious that he has a serious mental disability. Even total strangers, who have no idea what M's diagnosis is, seem to "get it" almost immediately, and are very kind and understanding towards him. Unfortunately there are a couple of people in our world who aren't so understanding. They seem to be obviously irritated just being in M's presence, they appear to see only the negative in everything he does, and make little mean/funny (but not really funny) comments about him. 

Why are some people like that?! Don't they know that M is doing the best he can and would LOVE to not have the schizophrenia and FASD that causes the differences in his thinking and behavior? Do they think they can somehow change his behavior through their displeasure? (hahahaha... ROTFL at that!) Does it somehow make them feel more "normal" (smarter, more capable, etc) to pick at him? Honestly, it's really easy to feel very smart and capable around a cognitively impaired, mentally ill child... You don't have to make him look bad, to look good. 

I just don't get it.... Don't people understand that schizophrenia is one of those "but for the grace of God" things? One in a hundred people, across the globe, have schizophrenia. It can strike anytime from childhood (although pretty rare) through a person's 30's and even beyond. Sometimes it runs in families, but sometimes it strikes down a person with no family history at all. 

I think you can really tell a lot about a person by looking at how they treat the most vulnerable in our society... the very elderly, the poor, the sick, those with mental disabilities. I think about my brother's recent experiences with a woman he met, and compare it to some treatment Michael's received lately, and just shake my head at the difference... I am very thankful that most people are so kind to M, it's really wonderful to see people's patience, understanding, and just plain goodness when it comes to him. I just wish I could figure out why some people aren't able to show him at least a small measure of kindness...

It's me again...

I think I've finally caught my breath after M's bad spell this past spring. I feel like I'm starting to get my energy back and have time time and energy for things like blogging. 

After the very difficult few months we've had, it feels so good to feel GOOD again. Right now M is as stable as he gets, he's connected, cooperative with school, and able to focus on things. What a blessing just that little piece is! During the bad spells he often just wanders restlessly for hours. He doesn't seem to be able to focus on anything... if he's awake he's wandering. It's very wearing to be around him when he's like that. It's such a relief to see him doing so much better again!

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We had company from out of town the other night... my niece and her family. We hadn't seen them for more than three years so it was wonderful to get together again. The cousins played beautifully (M did so well... he was truly at his best!) and R loved getting to know the other "brown" members of our family. She is totally in awe of A, her 12 year old cousin, and is practically counting the days until she is 12 and "just like A". 

It was such a fun evening, I do wish we could see them more often....  

The kids are really enjoying softball. We have found a wonderful Special Olympics team, which makes all the difference. (It's the same team they were on for swimming.) We've participated in Special Olympics a couple of times in the past and haven't been too impressed. (One program didn't want to let R participate because she was too "high-functioning"!) But this time it's been a great experience. If anything, the kids like softball even more than swimming... There is a really nice group of kids on the team, and the coaches are very good (and patient). Both M and R are learning the skills to play softball and having a great time while they are doing it! ~ 

Here are some pictures of last night's practice...

Well it looks like summer is really here.... We had a freeze warning just a week ago or so, but it's supposed to be 90 degrees by the weekend and the garden is up, so I'm pretty sure that summer has finally chased winter away. 

The goats and Grant are enjoying the sunshine (well not yesterday... because it rained all day!) but MOST days they are enjoying the sunshine. Here they are, all cozied up together by Grant's favorite rolling spot.

 

We've been keeping busy with school (three days a week) and had the state required evaluations done last weekend. As I got ready for the evaluation, going through the work the kids have done over the past year or so, and pulling examples of it out to show the examiner, I was pretty impressed with the kids and I! Sometimes I feel like I'm just not doing enough with school, but as I looked through everything they've done I realized they've really been working hard. 
Saxon Math is challenging for them, but they have stuck with it.... They've worked through language arts materials, unit studies, made lapbooks, poetry books, journaled, and worked on daily living skills. Going through their work helped me really appreciate the progress they're making, and how hard they are working. 

I got the letters from the evaluator yesterday, and I'll turn them into the school district with my NOI (notice of intent to homeschool) in August. 

The kids started softball with Special Olympics and love it. I was surprised that M likes it so much, he's usually a pretty low-energy kind of person. But he really enjoys practice, probably because there are mostly older boys on the team (both typical kids and kids with special needs). R likes all sports, so I figured she'd like softball too. I was a little worried at the first practice though when all these boys showed up...but not a single girl. Finally one little girl showed up to play, and she and R were best friends within 10 minutes, so all was good. 

We went to the rodeo last weekend... It's been kind of a tradition since we moved, each year we go to the Elizabeth Stampede. The kids love wandering through all the booths outside the rodeo grounds (last year R even rode the mechanical bull!) and then settling down on the bleachers (which always trigger terrible anxiety for M....at first.... until he gets used to them again) with a cold drink and some snacks to enjoy the excitement. 

Last year M got to sit by two rodeo queens who were down from Cheyenne Frontier Days, an event he's still talking about! But although he looked and looked he wasn't able to find any rodeo queens to sit by this year... Here's a couple of pics of the rodeo:



 

Well time to go.... I hear Grant yelling for his breakfast (yes, even with the windows closed... he's a very loud horse!) so I need to get moving.

the hogan

Back in 1997 I presented at my first FAS conference. It was a national conference and I was sitting on a parent panel, answering questions with several other parents. 

One of the parents on the panel I'd never met before... she was a Native American woman; the birth mother of a son with FAS. She was a very soft spoken, simple woman. Simple in her dress, her words... and her life. She wasn't highly educated, but something she said at the conference has stuck with me for 10 years now... even though most of the specifics of that conference, the clinical information professionally presented by doctors in the field, has been long forgotten.

She spoke of trying at first to live in the community with her son but, because of his FAS, it being too hard. The community was not a safe place for her son, and had become a painful place for her. So she and her son built a hogan far from everyone else, in an isolated part of the reservation... and that where they lived. 

Happily.

  At the time, I didn't "get it". I couldn't understand why anyone would do that. I thought this woman was quaint and interesting... but didn't fully appreciate her words or the wisdom behind them. (She also talked about people with FAS being "children of nature" and needing nature around them to be happy... something else I've found to be true.) I've realized lately that we've also retreated into our "hogan". Because of M's illness we just don't "fit" into the world very well any more... We aren't hermits, and cherish the friendships we have... but I've let go of trying to fit us into the world. I'll still post here when I can, but my computer time is limited to the very early mornings and late at night... and sometimes, I'm just too tired at those times to think. Please understand if I only post sporadically, or don't stay in touch the way I should... it just means my focus needs to be within my "hogan" at that time. 

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 For Granny.... pictures from the kid's Special Olympics swim meet. Both kids just started softball (also with Special Olympics) and love it, I'll post pictures when I can...

I guess it's time for an update... 

I haven't been posting much lately; M's latest rough spell took a lot out of me and I haven't had the energy (or the brain power!) to post nice newsy updates. I've been working outside instead, hard physical work is my "therapy" and (LOL) I've needed LOTS of therapy lately! 

I started this years gardening by putting a little "mini-orchard" in along the hill on the east side of the house (inside the fence where the deer can't get it!). I planted two apple trees, a cherry tree and a dwarf peach tree. The trees are very tiny, but they are all doing well and I'm seeing new growth, so I'm hoping they make it. I'd like to put one more apple tree in for dh (he loves Jonathan apples, but I haven't found a Jonathan apple tree yet) and then my little orchard is done. R and I had a nice little "lesson" out there yesterday, looking at how the tiny apples are growing from the spent blossoms. There is nothing like hand's on learning!

 

I finished hauling the last of the compost and spreading it on the gardens... I turned the compost into the soil of little kitchen garden, and just yesterday planted the tomatoes and peppers. There is also lettuce, sunflowers, cilantro ("volunteers" growing from last year's seeds) and chives growing in the kitchen garden.

 

Dh used the rototiller to turn the soil in the big garden (it's just too much for me to do by hand) and I got the timbers arranged around it. Gosh, those timbers are heavy! Yesterday the kids helped me set the fenceposts and I strung field fencing around it and hung the gate that used to be on the goat pen.... So, now that I've fenced the animals out, the big garden is ready to plant! It will have pumpkins, cucumbers, zucchini, and green beans.

 

M has mostly settled down again. He's having some problems socially that he didn't have before this latest "acute" episode, but overall he's doing a lot better. 

R is doing fine... She never gets tired of spending time with Grant, and rides several times a week. She's getting better and better at controlling him, and is now able to ride him around the pasture without needing my help at all. 

I love this picture of R and Grant... She was enjoying some ice cream and he was enjoying a treat of getting to graze on the long grass outside his pasture. They both look pretty content, don't you think?

 

And yes, we are getting some school done... but it's just too nice outside not to take advantage of it.