Monday, November 29, 2010

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.

I do love Colorado...

...especially the weather.

The temperature yesterday was in the 70's,

but today looked like this...

The kids (and I) were so excited about the first snow. We pulled out the hot chocolate and candy canes and made peppermint hot chocolate to celebrate.

R on her way to the barn to feed...

Tucker and Cubby feeling sorry for themselves...

It was a good day for staying inside and doing some studying...


...I do take my work very seriously, you know. I believe in perfecting my craft.

Sunday, November 28, 2010

Brighty

Thanks Renee, Steve and Liese for all the good suggestions of names for our new donkey. I had picked a name from the names you had suggested (all very good ones, by the way...) when M thought of a name that he thought would be just perfect.

The name doesn't start with "T", but it suits our new donkey so well that we've decided to keep it anyway.

His new name is Brighty...

...after Brighty of the Grand Canyon, of course.

If you haven't read the book...it's about a very brave burro who lives in Arizona, in and around the Grand Canyon. Brighty was loved by some humans, and loved them in return... but was also mistreated, tricked and abused by other humans. He was on his own for long periods of time and longed for company... And through it all he kept his sweet and gentle personality.

It's based on a true story of a donkey named Brighty who lived in the Grand Canyon from 1892-1922. Many of the adventures in the book, actually happened to the "real" Brighty.

There is even a statue of Brighty in the lodge on the North Rim of the Canyon.



`

Our Brighty began life as a wild burro in AZ, and has also spent many years alone... and probably lonely. But through it all he's held onto his gentleness and sweetness (although, unlike the famous Brighty, he hasn't solved any murders that I know of...).



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He's very gentle and patient with M, being understanding and accepting of M's hugs, quick movements, and sometimes clumsy grooming techiniques.



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Unfortunately, all is not peace and contentment at the barn. Tucker's being a pain in the neck... pushing Brighty around whenever he can.

But Brighty just gets out of the way when he has to and somehow holds onto his serene disposition.



`

Doesn't he have just the sweetest face?

Here are a couple photos I found of the original Brighty










Friday, November 26, 2010

Thanksgiving snapshots

Thanksgiving was crazy busy and fairly chaotic... but fun.

We hosted Thanksgiving for Joe's parents and any of his siblings that wanted to come, and Pat, a new/old friend of mine,  and her husband. Pat and I went to high school together, but were just acquaintances back then... We ran into each other again a couple of years ago (she also has donkeys and horses), and I found that she lives just a few miles east of us. It's been fun to get to know her again...

So anyway, it wasn't a huge group for dinner, but we did completely fill the dining room.

Here are a few snapshots from the day..

Proof of a die-hard homeschooling family... a quick "science" lesson while getting the turkey ready for the oven. The kids were fascinated by the turkey organs, and had to examine them (before I tossed them out).

Making a big pot of mashed potatoes, while the lead crystal... newly washed... dries on a towel in a protected spot back in the corner.


M napping on the couch before everyone arrives...


... and R on the phone with family who couldn't make it here.  (Can you tell she didn't want her picture taken?)


K (dd#3) looking at all the messages from previous years on our Thanksgiving tablecloth.


This is the last picture before things started getting a little crazy...

I have no pictures of the table nicely set with my mom's china and lead crystal, or lovely pictures of all of us sitting around the table... I was just too busy to even think about grabbing the camera!

After dinner... definitely a crowded kitchen!


... and not an inch of open counter space anywhere in the kitchen.

Grandma and Grandpa seemed to be an oasis of calm in the midst of all the noise and commotion.



Before long everyone headed back home, and the house was quiet (more or less) again.

There were lots of dishes to do...



... and chairs to put away.



... but by then I was pretty much out of energy.  (Unfortunately, M was still hyped up from all the excitement!)



I don't have a single picture of all of us together yesterday, so I'll close with this one of K and I.



Happy Thanksgiving. :)

Tuesday, November 23, 2010

Our new donkey...

... needs a new name.

 We got another donkey when Cubby left... (no sense having all the hay just sitting around in the barn taking up space, when I can get rid of it more quickly by getting another donkey! Sigh... I can always buy more.)

Anyway... isn't he handsome?



He reminds R and I a lot of Tilly, the donkey we had to put down last spring... and it's looking like he'll be a permanent member of the family. Like Tilly, he was born wild and rounded up by the BLM.  He was young when he was captured, and is 10 now... We got him from Longhopes, and his previous owners named him Santiago. It's not a bad name, but I'm not crazy about it.

He's very sweet and calm, (K, my youngest grandson, has already been on his back!) but because he's spent virtually his entire life (since being captured) away from other equines, he really doesn't quite know what to do with Murphy and Tucker. He likes Murphy, but is timid around him... and he started out very afraid of Tucker, although that seems to be getting better.

We've been trying to think of a new name for him, but haven't come up with anything yet.

If possible, I'd like to keep our pattern of donkeys having names that start with T...  We thought about Toby, but then realized that is sounds too much like Cody (our dog's name). We're considering Teddy, because he is such a soft, cuddly, donkey... but it doesn't really quite seem to fit either.





Doesn't he just have the sweetest face?

I'm gathering suggestions, so if you have any ideas for interesting, donkey-like, names that start with T... let me know! :)

Monday, November 22, 2010

The big guys are back




For most of the year the deer population around here is made up of mostly does, fawns and yearlings. Groups of them, sometimes fairly large (20 or so) wander through the neighborhood grazing, playing, resting in the shade, and trying to keep one step ahead of the coyotes.

But the whole atmosphere changes each Fall when the big bucks go into rut. They invade the neighborhood and it's a time when we have to be more careful around the deer. The does will defend their babies... (as Cody found out last summer when he decided to chase a fawn and I had to save him from being trampled by the baby's mother!)... but as long as you leave the fawns alone the does are very sweet and passive.

The big bucks are something else again...



For one thing, they are HUGE... the older ones are much bigger than the does, and they get a look in their eyes that is challenging. They strut around the neighborhood as though they are on the top of the food chain, and the rest of us had better watch out!



There has been a larger than normal group of big bucks roaming the neighborhood this year...


They are beautiful, but I won't mind too much when they move on... it's a little scary to have them wandering around the front yard.

Thursday, November 18, 2010

saying good-bye

Cubby our "foster" donkey leaves tomorrow to go back to Longhopes. I watched him playing with Tucker this afternoon and felt a little sad...  He hasn't always been the easiest little guy to be around... even if you don't count the time he decided to exit the stall before I'd opened the stall door... launching all 600 lbs of so of his weight right through the door. (It was my fault... I was feeding Tucker bits of apple while training him, while Cubby was stuck in the stall. But who knew Cubby loved apples enough to rip a stall door off it's hinges to get to them?!)

Say what you will, Cubby's got a ton of personality, and we're going to miss him.

This afternoon he played for a long time with a bucket he'd found, picking it up by the handle  with his mouth and swinging it back and forth... Then he and Tucker played with his favorite toy... a stick. I've never seen an equine that played with sticks as much as Cubby does. He pulls then off the scrub oak that the goats killed years ago, and I find them all over the pasture... Today he and Tucker walked around holding on to opposite ends of the same stick. It's so funny to watch them when they play like that... It looks like they've somehow yoked themselves together.

I took some good-bye pictures this afternoon...

Here's my favorite.

I love his eyes... intelligent, and yet so soft.



Good-bye Cubby.... I hope you find a wonderful forever home very soon.

Tuesday, November 16, 2010

The day seemed...

... to end abruptly. It went from sunny afternoon, to cold and dark, in the blink of an eye.

M and I were in the classroom doing school this afternoon and outside the sun was shining and the air was warm enough to be comfortable.

As M worked the wind started to pick up and I watched low, fast moving, dark clouds streaming in from the north...  quickly covering the slow moving lighter clouds that had been in the sky.

For awhile the pasture was in sun, while at the same time the barn (in the same pasture) was shaded by the heavy dark clouds. It looked strange and the animals moved closer to the barn.

As the thick blanket of clouds blocked out the sun we slipped, almost immediately, from day into evening....

The wind was so fierce that it kicked up dust devils in the paddock, and it picked up and flung away to the south anything light enough for it to carry.

Within minutes of the first clouds pushing in from the north, the only sun left was just a thin line on the southern horizon.

Ten minutes later that same horizon was shrouded in a low lying cloud.

Then the snow started, fast and wild, the wind blowing it sideways... the tiny flakes hitting hard enough to sound like sand against the house.

Murphy and the donkeys hid in the barn...

...and I said a quick prayer that the old cottonwood on the north side of the house would be strong enough to stand up to the wind.

And then it was over... the only evidence of the storm's passing was the need to turn the lights on early because the house had gotten so dark... and a new light dusting of snow.

Monday, November 15, 2010

*~*daybook*~*

simple-woman-daybook-small

FOR TODAY

November 15, 2010

Outside my window... dark, cold, with a light frosting of snow still lingering in the shadows and low spots.

I am thinking... about M's previous pdoc and whether or not I should try to contact her.

I am thankful for... life, friends, family, home.

From the learning rooms... M seems to be settling down again during school time... hopefully that trend will continue.

From the kitchen... I did the month's shopping yesterday, including what we'll need for Thanksgiving dinner. It's good to have that done...

I am wearing... Levis, black sweater, wool socks, crocs

I am creating... doing a bit of knitting, plucking a little on the guitar and banjo... same old same old.

I am going... to call the pediatrician today and figure out how to get all the metabolic testing done that M's pdoc wants. The pdoc wrote all the orders on one script, so I'm guessing I'll have to have it all done at the same place...

I am reading... I've almost finished There Eyes Were Watching God, and I'm also reading a dog training book I found at the library the other day.

I am hoping... to get some energy back soon.

I am hearing... a quiet house... just the burble of the boiler in the basement, and the tick of the clock.

Around the house... no house projects right now, and the gardens are frozen for the winter, so not much going on.

One of my favorite things... growing herbs on the kitchen window sill. I love growing things I can eat. I bought a little container herb garden yesterday... and it just looks happy sitting there in the sunny window.

A few plans for the rest of the week...metabolic testing for M, M's regular blood work, therapeutic riding, bowling, field trip, and possibly EK meeting with homeschool group, dog training class, evening class on Wills... It's a busy week, I hope the weather cooperates.

A picture I'm sharing..

Two pictures this time that I took right after the last snow.

The kitchen garden fence, with the snow balanced so delicately on each strand of wire...




... and a deer I found trying to graze in the front yard.

She left pretty quickly when she saw me....



Visit Peggy's blog for more about The Simple Woman's Daybook

Friday, November 12, 2010

One of *those* days...

Dinner was in the oven and I was trying to quickly pick up around the house, while I mentally made a list of the things I'd planned to do today... but hadn't gotten done.

Realizing my list was not making me feel one bit better, but only making me feel more stressed and hurried, I shifted gears and started mentally making a list of things I had gotten done. The list started great... but deteriorated quickly.

Here's my list:

`
`1. got dinner made

2. got a little school done

3. fed the animals

4. got a shower taken

5. brushed my teeth

6. got my hair combed

7. got the toilet flushed (the kids sometimes forget)

(yes, I was getting THAT desperate to think of things I'd gotten done today)

`

`Hmm... it was definitely one of those days.

Monday, November 8, 2010

Playing hooky

R''s yearly review for DD services was yesterday, and once it was over and our service coordinator left, we should have headed right into the classroom to get school done.

But the warmth of the sun was so inviting, and the forecast for today is for a high in the low 40's (compared with yesterday's high in the 60's at least) and possibly some snow.

So, since it was likely to be the last warm day for awhile, we decided to play hooky instead and spend the beautiful afternoon exploring a walking trail near our house (we'll have plenty of time for school when it's cold and snowy out!). We've driven past this trail countless times (it's just over the hill from us) but this was the first time we actually took the time to follow it to see where it went.

A little side trail off the main trail... there were lots of these... probably made by deer.



The view from the trail. The area the trail runs through is a funny mix of natural prairie surrounded by huge expensive homes (McMansions).  The sky was just a brilliant blue...

I love the old cottonwood trees. I love the shapes their branches make, the huge trunks, and wondering about their history... What the land looked like, what was going on here, when they were just saplings.

~


After walking about a mile we found this little old building. It looked like it was made from old stone and bricks mixed with some kind of cement or plaster.



There was old balled up barbed wire and broken fence posts outside and, not far away, what looks like an old livestock chute...  M was hoping the little building was the one-room schoolhouse that used to be out here. Apparently it was just a 1/2 mile or so from our house, but many years ago, shortly after it closed, someone moved it and no one knows quite where it is now...   There are a couple of scary/sad blizzard stories connected to that lost schoolhouse and M's wondered for years what might have become of it. I had to tell him that no, this wasn't the "lost" schoolhouse... but we'll keep looking.



Another half mile or so brought us to a neighborhood and this nice little park... where R showed us that she can still hang by her knees (and M stressed... sure she would fall!).

On the way back home... R on the trail, heading toward the little stone house... with the big houses that surround this area lining the hill above it.

colors of autumn

Not long ago Leigh (Five Acres and a Dream), wrote about the beautiful colors of October on her acreage.

Well, October is over,  and it's been so dry here that most of our acreage is yellow/brown...

... but I have been loving the colors on the smoke tree this year.


It's right outside the kitchen window, and during the Fall it's beauty just seems to brighten the whole kitchen.




I like it so much I keep a "bouquet" of it's leaves on the table.


The leaves are starting to curl now, and I'm guessing it won't be long before it's bare...


... which make me appreciate it all the more during these last few days of autumn.