Yesterday was a challenge, a day of ups and downs (or more accurately, downs and ups).  

 M's been pretty unstable for the past few days. He's going back and forth between the calm stability he (we) had been enjoying for the past couple of weeks, and the edgy, unpredictability that's been the norm since the beginning of the year. 

Yesterday morning he had a severe meltdown in the car... something that's pretty unusual these days. 

After going through many meltdowns in the car when he was younger, I've gotten very careful about not putting us in that situation. It's incredibly scary when he's out of control in the car, so I learned... If he's too edgy, we just don't leave the house. 

 But he seemed ok when we left the house. 

Unfortunately he fell apart within minutes. I should have turned around and gone back home, but R needed to get to day camp so I kept going... hoping he'd settled down quickly. 

 He didn't though, and the 30 minute ride was a nightmare... No one was hurt, no damage was done, and we got there safely, but I felt completely exhausted by the time we got to camp. 

He was still unsettled and disconnected for the rest of the morning but, thankfully, stayed calm after that initial meltdown. 

 By afternoon M was more himself again and got school done before going back to pick up R. 

It's weird how he can be so incredibly disconnected and out of control, and within just  a few hours be thinking well enough to get school done. He recovers from these episodes faster than I do... 

 R was so excited after camp. I real hula dancer had come to camp and taught the kids a dance! (As a big Lilo and Stitch fan, she loves Hawaiian music! :) After dinner she brought her CD player downstairs, turned her Lilo and Stitch CD on, and taught us all her hula dance. Even dh got up and danced! 

R was having so much fun teaching us something... at one point she asked dh, "Have you ever smiled so much it made your head hurt?" She was having a wonderful time... It was silly and fun and just what we needed after the morning's drama. 

 After dancing the kids and I went out to do the barn chores... but first M had to play with the donkeys. He's learned that they get very curious when he sits down in the pasture (probably wondering why anyone would want to sit in that mess!), and even Jack will come over and see him. It was good to see him connected again and enjoying life...

   

So... it was a day what went from REALLY bad, to pretty good. It's so nice when things balance out that way.

picture post

This has been a wild week... M has gotten more unstable again, which makes everything more difficult, and for some reason R has had insomnia the past few nights and been up to (and AT) all hours! 

Last night I just crashed... R was still awake (but quietly staying in her room) and I fell into bed and didn't wake up until 6:00 this morning. Eight hours sleep in a row.... I can't remember the last time I got that much sleep! 

It feels very good to feel rested... 

 Anyway, I think it's time for a picture post. We worked at the library yesterday and after our shift I checked out the sale room and found a bunch of American Girl books. I was so excited, and had to buy them all! R is loving having so many new books to read, and I keep finding her curled up here or there, totally immersed in Addy or Felicity's life. 

 I've loved raising daughters.... I hope R doesn't grow up too fast. (I'm not ready to be done yet!)

 

 This picture was taken at Girl Scout camp last summer, and I love it. R, still smiling, after spending an entire day, in the heat, dust and bugs of camp! (During GS camp week it was in the 90's every day but one!)

 

 M got a digital camera for his birthday and has been taking LOTS of pictures... Many of them are very cool, in a weird sort of way. (The date on his pictures is wrong.... I need to reset that for him!)

 

 He also takes some nice, "regular" photos too. I really like this one he took of me after my surprise birthday dinner. I'm wearing the scarf my sister made for me on her loom... Isn't it amazing? I can't wait for the weather to get cold enough to wear it! I'm also wearing (if you look closely!) the St Brigid's cross my brother sent me from Ireland. It is absolutely beautiful, and I haven't taken it off since it got here...

 

 (For anyone with eagle eyes. No I don't usually keep a trash can in my living room, LOL... That evening was so cool we started a fire and that black trash can is full of kindling) 

Here are some pictures I took... 

I took this one a couple of weeks ago (sorry it's a little blurry, I had to zoom in from far away). The deer are grooming each other. We haven't seen this very often, so I thought it was cool and had to try and get a picture of them... 

 (You can also see the neighbor's horse, Chance, in the background. He'd gotten himself stuck in the fence, trying to sneak into my pasture...)

 

 Remember when I talked (here) about the deer starting to get their winter coats? Here is a doe wearing half her summer (brown) coat and half her winter (gray) coat. 

 

 Oops... she caught me!

 

 Well my playtime is over... the sun is up, the animals are yelling for food, and I'd better run....

Awesome Day!

Yesterday was just a wonderful day... 

We bowled in the morning with R's Girl Scout troop, and had a wonderful time. R worked on getting the hang of throwing the ball (without making it bounce!).

 

And was fascinated by the ball return....

 

M got a strike and did a happy dance (actually he happy-danced after every turn, but after his strike it was especially happy!). Sorry the picture is a little blurry, he was moving pretty fast...

 

Guess where R was? That ball return never did lose it's allure...

 

In the afternoon we headed across the street to help our neighbor with a sewing project. She's making felt poodle skirts, one for each girl invited to her daughter's birthday party. (Yes, her parties tend to be full fledged extravaganzas!) She bought the pattern, felt and poodle appliques for the skirts but.... doesn't know how to sew. So the kids played and watched movies while I adjusted the pattern, and showed Steph how to pin it on and cut it out. It was sooooo nice to do something "normal". I haven't sewed much in years.... really since shortly after we got M. But it felt so good to be accomplishing something concrete... something easy and uncomplicated, something I know how to do, and helping a friend at the same time. 

M did well during the time we were at her house, and R and Steph's daughter played happily the whole time we were there. Steph has 9 skirts to make, so she'll cut them all out this weekend, then I'll go back and teach her how to use the sewing machine to put them together. As we walked home from Steph's it was lightly sprinkling and the sky was dark. Luckily the rain held off until we were home. It rained hard then though, and I stood out on the porch and just enjoyed the cool, fresh, wet smell of the rain.

 

After the rain, we did some school. M seems to suddenly have "lost" a significant amount of academic material he previously knew. We're not sure why the sudden problems with cognition, but I need keep track of what's going on and doing school is the easiest way to measure how he's doing cognitively. I'm planning on doing our regular schedule of "sit-down" school at least three times a week for awhile (even though we really could keep a more relaxed schedule for another month or so) just to keep track of M's thinking. This is another time I'm so glad we're homeschooling... This kind of sudden loss of skills would be missed (at least for awhile) if he were in regular school and out for the summer, and might be missed completely if the teacher didn't know him well, or attributed the loss to summer break. 

School time yesterday was a joy... both kids did well, with almost no whining or complaining! M seemed to be thinking a little more clearly and R showed me that she can count all the way to 100 by 2's. This is a big accomplishment for her, something she's been working on for a while (and gotten very angry and frustrated about!). It's interesting... she often can't see the "pattern" to things. She can count by ten's to hundred and by 2's to ten very easily, but to combine the two... repeating the 2,4,6,8, sequence preceded by the 20, 30, 40... sequence has been very difficult for her. That trouble seeing the "big picture" is an FAS thing, something I've known about for years and taught others about in the trainings I used to do. But it still takes me by surprise sometimes when I see how it impacts her learning. So anyway... I was VERY happy to see that R had mastered that skill and to see how proud she was of herself... We had a quiet evening, watching a silly movie together, then playing a game (Sequence... a real favorite of ours!) before bed.


I love days like yesterday... If I could somehow record it and replay it from time to time, I would. But since I can't I'll just have to blog about it and save it this way.

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!

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...

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!