Saturday, June 30, 2007

A little A/C for Granny


Colorado Weather
Part 1

This past winter was a rough one out here on the Colorado prairie. It started snowing in October....



... and it just kept snowing.



By January the snow was so deep that the deer struggled to make their way through it and took to the roads as they moved in search of food, and people threw hay for them to help them survive.


We made pinecone, peanut butter and birdseed feeders for the birds.


And still it snowed....



...and snowed...


...and snowed.



Until finally, just when we thought spring would never get here... the snow stopped and the sun came out.


to be continued...

Friday, June 29, 2007

I can't believe it's Friday already, this week has absolutely flown by!

Girl Scout camp has been ok... Not the huge success it's been in previous years, but R has had fun. Her leader never did "get it" about R's FASD, so R has been on her own for the most part. She's lost a few water bottles, had some frustration over crafts that she couldn't figure out, but the biggest issue... one that has reminded me, yet again, of why I'm homeschooling... is the social piece.

At camp the girls are split up by age, so R is with girls who are 10-11 years old. Like many kids in public school, these girls seem to be growing up very quickly. Because of her FASD, R is developmentally much younger than they are, which has caused some problems. ("No R, ten is too young to have a boyfriend, and no.... you can't move out and live on your own when you are 13!".)

This week has been a good reminder to me of why we homeschool... R is so vulnerable to peer influences (as are all kids with FASD), and unfortunately she (they) tend to pick up on their typical peers undesirable behaviors waaaaaaay before picking up any desirable ones. This hasn't been in issue with her friends from our homeschool group, because the kids are all such very nice, developmentally appropriate, kids... it has been an issue at camp though.

I spoke to the camp director (who has known R for several years and does seem to "get it") and we agreed that next year R will not move up to the next age group. She'll be with a little bit younger girls, but it will be a better fit developmentally and in terms of R being able to understand the program (most of this year's program, a science theme, just went right over her head). R only has one, maybe two, more years before she ages out of this camp, but the camp director said that as long as R wants to go to camp, they have a spot for her... that after R is technically too old for this camp, she can continue to come as a helper for the younger girls. What a nice offer (and one we may take her up on someday....)

Overall R has had a good week though and, for the most part, enjoyed herself. She's learned some new songs and clapping games, made some awesome crafts and (the highlight of her week!), cooked some really cool snacks! Yesterday they made s'mores in their solar ovens, the day before they made banana boats! :) Mmmmm....

With R at camp, and only M home, I decided it was a good week for spring cleaning. I've been working outside so much this spring that the house was looking pretty neglected. So I've spent each morning this week deep cleaning... (it's incredible how dusty and dirty this place can get!) I've washed windows, cleaned light fixtures and radiators, scrubbed floors, etc. and the place is looking pretty good... if I do say so myself.

In the afternoons M and I have been having a "Harry Potter Festival". Watching the Harry Potter movies, in order, one each day. These movies are too scary for R, but M likes them, so it works perfectly for something "special" to do while she's gone. It's been hard for me to sit still (and stay awake!) through these movies... but I have gotten a lot of knitting done!

Oh no,  it's getting late... I'd better get moving if I'm going to get R to camp on time!

Monday, June 25, 2007

FASD rant

Rather than spend the evening sitting around ruminating on what's bugging me, I've decided to blog instead in the hopes it will get my mind on something else. 

Did you know (by the way) that the word ruminate comes from the Latin word "ruminare" which means chew the cud? I knew that goats (and cows and other cud chewing animals) have rumens, and are called ruminants, but couldn't figure out what that had to do with going over something again and again in your mind... 

After doing a little research, I get it now though. I've been chewing something over mentally this evening... and it's time to swallow it down and be done with it! 

So, I'm going to talk about Girl Scout camp instead. Today was R's first day of camp this year... It's the third year she's gone to day camp, and it's still hard to leave her. You'd think after five kids I'd be used to my little chicks growing up and moving away from the nest. But it's still hard for me sometimes... especially with M and R. 

My worry with Girl Scout camp is about the FASD piece of things. I am careful to make sure that the camp leaders know that R has special needs, filling in the medical form very completely and including her diagnoses. I also touch base by phone before camp starts to try to give them an idea of what extra help and/or supervision, R might need to be successful at camp. I explain that she has trouble with cause and effect and because of that she needs to be watched more closely than other girls her age. When I called this year's leader she listened politely then asked if that meant R would walk into a fire or something. (Huh?! What kind of a ridiculous question is that? Would I leave a child capable of walking into a fire at a Girl Scout camp??!!) I swallowed my sarcasm and said no... R wouldn't walk into a fire... (luckily she couldn't see me through the phone as I rolled my eyes) but R did need to be supervised closely and gave her another, more realistic example of what the trouble with cause and effect might look like. I said she might need a "buddy" of one of the teen helpers, or even just a typical peer, who could act as a "model" for R, helping her know what do to, and how to do it. (R struggles so much with auditory processing, and misses much of what is being said to her... especially if it's something that she doesn't already have a frame of reference for, but she's gotten very good at watching other girls in the troop and figuring things out that way). The leader said she would watch R, but was sure she'd be fine... So I dropped R off knowing that the leader didn't really hear, or understand, what I was telling her... and hoped that things would go well in spite of that. 

When I got there to pick R up, I watched as she wandered... unnoticed and unsupervised... away from her group. Luckily she didn't go too far before noticing that she was alone and turning around to find the rest of her group. As I signed R out the leader assured me that everything had gone "just fine". Girl Scout day camp is a pretty safe, protected environment... I'm really not too worried about R's safety there. Even if she wanders too far away, she knows enough to be safe until she's found (camp is at the Plains Conservation Center which is basically just an enormous version of our big pasture!) . 

What's frustrating for me is that, although I clearly inform the leaders that she has a real disability... they see how typical she looks, and often acts, and seem to believe that she must not really be disabled... since they can't see it. 

This "illusion of competency" haunts children (and adults) with FASD, interfering with them receiving the supports they need to be successful. It starts young in little things like day camp, and continues in increasing bigger and more serious ways through their lives... 

Yes, R can probably manage through the day without help... She won't understand much of what she's doing (she made a little windmill thing today, she couldn't tell me what it was, or what it was supposed to do... all she could tell me was that it didn't work) and will probably end up with some hurt feelings because she so often misinterprets what's going on socially, but she can make it through the day.

How much better though to give her some extra support... to trust me that she has a real disability...and give her a chance to have a really wonderful day. Give her a chance to experience the richness of camp...to make new friends, learn and experience new things, and have a chance at remembering what she's learned...

Sigh.... these kinds of things just make me crazy sometimes.

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Here's R ready for her first day at camp, followed by a picture M took at the Plains Conservation Center...





Saturday, June 23, 2007

Grumble, grumble... after spending an hour typing a post, I clicked on save and my computer somehow lost the server (and my post). So here we go again... 

It feels like we've been running around all week, but in looking back we really didn't get that much accomplished... On Sunday we celebrated Father's Day and dh's birthday with a brunch with his family, and afterwards we "kidnapped" him for a surprise trip to Bass Pro Shop. (which he loved...) We celebrated dh's real birthday on Tuesday, but since our big kids couldn't be there then we celebrated again last night by taking dh to Joe's Crab Shack for dinner. (it's his new favorite restaurant... for obvious reasons!). 

 I am feeling SO done with celebrating now... it's a good thing we don't have any more birthdays for awhile! In between all the celebrating we've mostly just worked outside, and puttered around the house. We didn't get much school done but I got a lot of gardening done, while R spent time with Grant and played.



Here are some pictures for L... This is my first tomato this year (hopefully the first of many!), see it peaking out from the foliage?. I'm pretty pleased to have a good sized ripe tomato by mid-June. That's not bad for 6,300' elevation! (Within moments of this picture being taken this tomato was picked and eaten... by me. 

There is nothing better than a just picked tomato, still warm from the sun!)

 

I did run back to town for more Sweet William for the flower garden. I ended up with a little more than what I planned on, but it looks nice, don't you think?



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We went to softball practice on Wednesday evening, and I'm so happy that both kids are still really enjoying it. It's not too surprising that R is enjoying herself, she loves sports and meeting new people... but it's a lot harder for M. Because of his motor delays and medication issues (dizziness) the physical part is hard for him, and just being able to manage himself in such a busy and challenging environment is difficult. He has to adapt and adjust to the other kids (many of whom can be unpredictable themselves!) and the coaches, while trying to learn the new skills he's being taught. These kinds of situations can be so difficult for him that he just stops trying... but fortunately, this time, he's still working at it and seems to really be having a good time. 

The season ends with a couple of "tournaments" the end of July... I hope M's enthusiasm and energy last until then. 

We worked at the library on Friday, and squeezed a play date, a run to Elizabeth for hay, and a couple of other little errands into the week... 

I would love a quiet weekend, but we have a wedding to go to this afternoon and we'll have to leave before the reception to make it to our homeschool group end-of-the-year party! After all last week's running around I decided this next week would be a "no drive" week. (We try to have one no drive week every 4-6 weeks. It's good for us and the environment, to park the car for a week every month or so!) Then I remembered that R has Girl Scout day camp next week. Sigh.... so instead of staying home for the week, we'll be driving her back and forth to camp each day! It's worth it though, she's had a wonderful time at camp the past two years, and has been waiting for months to go again. 

Well I've been working on this post off and on all morning (sorry if it's a little disjointed...), and I really have to get moving now and get the kids ready for the day!

Wednesday, June 20, 2007

Green Chili Recipe

When my niece was here visiting a couple of weeks ago, she asked for my green chili recipe. I forgot all about sending it to her (sorry T!), until a few days ago when I was making a pot of it for dh's birthday. 

Here it is... let me know how it turns out! 

Green Chili 
1-2 lbs pork (diced) 
1-2 tbsp flour 
1- 4 oz can diced green chilies (mild) 
1- 4 oz can diced jalapenos 
1- 14 oz can chicken broth 
2 -10 oz cans tomatos and green chilis (I use rotel) 
1/4 tsp garlic powder (or to taste) 
1/2 tsp. cumin (or to taste) 

On medium heat brown pork, drain fat. Add flour to pork and stir. Add tomatoes and green chilies, chicken broth, seasonings, diced chilies, and diced jalapenos. (For very mild chili leave the jalapenos out... for a little spicey, but not too hot, try about a tablespoon.... for very spicey chili just add the whole can! :) Stir and bring to a boil, simmer at least one hour. 

Feel free to play around with this recipe.... You can use boneless, skinless chicken breast in place of the pork. If you don't like so many tomatoes, just use one can of Rotel. I like lots of mild chili peppers so I usually put in two cans of those instead of just one. This recipe it very forgiving... I'm always substituting one ingredient (that I have) for another ingredient (that I'm out of) and it always turns out great.

You can also make this in the crock pot. Just brown the meat on the stove, add the flour and stir, then transfer it into the crockpot and add the other ingredients. I usually start it on high, then turn it down after about an hour and let it cook all afternoon on low. 

Here's the finished product... Mmmm, mmmm!

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.

Tuesday, June 19, 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....)

Saturday, June 16, 2007

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...

Thursday, June 14, 2007

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...





Wednesday, June 13, 2007

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.

Friday, June 1, 2007

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...