Today I had the opportunity of again playing the piano at the Senior Citizens' Center for their variety show. I accompanied as well as provided background music. As before, I came away much more uplifted, I'm sure, than I could have lifted the people there.
I had a profound experience that humbled me to my very core and had me crying the whole entire drive home. Thank goodness for sunglasses; they served me well at the Arby's drive-thru where I stopped and got my very nutritious lunch on the way.
I got there at 11:00 to practice with the chorus (the variety show was at noon), and when I went to the room we were going to practice at, it was completely full with people of all ages in the mentally handicapped community. I went to the lunchroom/auditorium to find Margaret and it turned out that the handicapped people who were there were doing a talent show. Watching them perform absolutely dropped me to my knees. Most of these people don't have a mental age of more than 4 and many have severe physical limitations, as well. The show was so well-put together and so creatively done to accomodate them and enable them to share what they could, even if was just waving a scarf in time to a recorded song. I looked at their faces and saw how much joy they had in doing something so simple with their very limited physical bodies and realized just how very much I have to be thankful for. Even as I'm typing this the tears won't stop. The finale number was everyone dancing to "The Twist." Some could twist, some could just bob their heads in time to the music or wave their arms, some could just smile. And it was beautiful.
I have been very bogged down lately with worry over Brittany, and have also been dealing with a great deal of grief having to do with accepting that she has autistic traits. It was so bad for me yesterday that I asked Kelly for a priesthood blessing, which was a huge help and comfort. I was given some insights that helped a lot. When I showed up at the center and got to see this very special talent show, I knew that Heavenly Father was showing me how much worse it could be for her and pointing out that even with these severe disabilities these children of his still had joy in their lives, personally and to give to others. And can they teach others about Heavenly Father? Absolutely. I was reminded of the poem "Forgive Me When I Whine, I Have Two Legs, the World is Mine." My daughter has full use of her body, she is able to express herself and maintain emotional relationships. She is creative and intelligent and is able to express those qualities. She is compassionate and giving and has a darling sense of humor. A little glitchy in her processing, yes. Day to day can be a little labor intensive at times, but she will be fine.
Tuesday, March 31, 2009
Sunday, March 29, 2009
Laura Ingalls Revisited
Lately I've been watching the old TV show Little House on the Prairie. It's on my local PBS station and I decided to start recording it. I have to say that it has been a very refreshing change from the offerings on current TV and cable. I think it really was the last of the really good, quality shows offered on TV. It is so nice to never have to worry about language or sexual content. I love that God is talked about and worshipped. I love that every show has a real life message that is in harmony with values that I hold dear. Brittany and I have thoroughly enjoyed the episodes in which Laura has been courting and newly married; she and her husband can fight with the best of them and it is a really great thing to watch conflict be resolved the right way.
The pilot episode of this show came out when I was in 3rd grade! My school teacher that year was reading the Little House books out loud to the class, and I remember how magical it was the day she announced that there was a new show on TV based on the books. We looked forward to that first magical night with great anticipation; I remember being so excited that the family dog, Jack, was even there. As I got older I lost interest and as a teenager even mocked it, especially when it was dramatic. But I have to say that for all his personal flaws, Michael Landon produced one amazing show that reflected the kinds of values so missing in our current rising generation. Love of country, family and God, and the value of honest, hard work. Good stuff!
The pilot episode of this show came out when I was in 3rd grade! My school teacher that year was reading the Little House books out loud to the class, and I remember how magical it was the day she announced that there was a new show on TV based on the books. We looked forward to that first magical night with great anticipation; I remember being so excited that the family dog, Jack, was even there. As I got older I lost interest and as a teenager even mocked it, especially when it was dramatic. But I have to say that for all his personal flaws, Michael Landon produced one amazing show that reflected the kinds of values so missing in our current rising generation. Love of country, family and God, and the value of honest, hard work. Good stuff!
Monday, March 23, 2009
And my new calling is. . .
Anyone who knows me really well is going to laugh their heads off, because yesterday I got my new calling in our new ward! I am the new Bear Den Leader.
Me plus dirt and bugs equals EWWW.
So far I like all the people I'll be working with, though--and this isn't totally new; Kelly and I were Bear Leaders when Shane was a bear. Can I just say that when they sustained me yesterday, though, my whole family thought it was hysterical.
I knew I was in for it when the counselor calling me said, "You know, some callings are harder to fill than others." He also alluded to needing someone with the time and organizational skills to pull it off. I can make the time, but obviously they haven't gotten to know me well enough to know that organizational skills are NOT my strong point! Creative, yes. Organized, NONONONONO!!
Still trying to decide how I feel about getting the pretty yellow leader shirt, and how excited I should get about earning boondoggle beads at Roundtable.
Me plus dirt and bugs equals EWWW.
So far I like all the people I'll be working with, though--and this isn't totally new; Kelly and I were Bear Leaders when Shane was a bear. Can I just say that when they sustained me yesterday, though, my whole family thought it was hysterical.
I knew I was in for it when the counselor calling me said, "You know, some callings are harder to fill than others." He also alluded to needing someone with the time and organizational skills to pull it off. I can make the time, but obviously they haven't gotten to know me well enough to know that organizational skills are NOT my strong point! Creative, yes. Organized, NONONONONO!!
Still trying to decide how I feel about getting the pretty yellow leader shirt, and how excited I should get about earning boondoggle beads at Roundtable.
Stupid *BLEEP* Weather!!
So you can imagine what I REALLY wanted to put in the title. But I am a righteous LDS woman working at the Lord's store and I shouldn't talk like that. :)
I am so DARNED ANGRY. And here is why. Brittany has been doing fan-TABulous with her migraine/head pain for about a week and a half. We found some natural remedies that have been working wonders and have brought the pain down so quickly--one is Magnesium Ionic Fizz; it's in powder form and you mix it with about 6 oz. water like the Emergen-C stuff. The first time she tried it, her pain level was at an 8; 15 minutes later it was a 5 and by the time an hour had passed it was down to a 2. Not pain-free, but she is so used to pain that anything 3 or under is a pretty darned good day for her. I found out last week about peppermint essential oil for sinuses, and a friend told me it also works for headaches if you apply it to the temples and also across the forehead if it's really bad. The first day I tried that on her, her pain was down to a 2 or 3 with the fizz; after the oil it was down to .5!
You'd have to have been living at our house for the past 2 years to realize what a miracle that is. For the past few days she has had such low pain that she hasn't even needed anything.
Enter today. Woke her up for school and she was at an 8. Gave her the fizz. She begged to skip her first class and sleep an hour longer. Slept, got up and asked if it was okay to take the magnesium again. STILL AT AN 8!!! Took the fizz again. Stayed at an 8. Applied the peppermint oil. Pain cam all the way down to a whopping 6. Looked out the window to an overcast, low-pressure day with snow flurries. Realized that my suspicions that the weather plays a big role in this mess is right, because her really great days coincided with the weather.
I'll be darned if every time she has the worst migraines/headaches isn't on days like this. What am I supposed to do?! I can't change the weather and we can't move to Tahiti. My husband works in Orem, Utah and we happen to like and need his job!
I am so DARNED ANGRY. And here is why. Brittany has been doing fan-TABulous with her migraine/head pain for about a week and a half. We found some natural remedies that have been working wonders and have brought the pain down so quickly--one is Magnesium Ionic Fizz; it's in powder form and you mix it with about 6 oz. water like the Emergen-C stuff. The first time she tried it, her pain level was at an 8; 15 minutes later it was a 5 and by the time an hour had passed it was down to a 2. Not pain-free, but she is so used to pain that anything 3 or under is a pretty darned good day for her. I found out last week about peppermint essential oil for sinuses, and a friend told me it also works for headaches if you apply it to the temples and also across the forehead if it's really bad. The first day I tried that on her, her pain was down to a 2 or 3 with the fizz; after the oil it was down to .5!
You'd have to have been living at our house for the past 2 years to realize what a miracle that is. For the past few days she has had such low pain that she hasn't even needed anything.
Enter today. Woke her up for school and she was at an 8. Gave her the fizz. She begged to skip her first class and sleep an hour longer. Slept, got up and asked if it was okay to take the magnesium again. STILL AT AN 8!!! Took the fizz again. Stayed at an 8. Applied the peppermint oil. Pain cam all the way down to a whopping 6. Looked out the window to an overcast, low-pressure day with snow flurries. Realized that my suspicions that the weather plays a big role in this mess is right, because her really great days coincided with the weather.
I'll be darned if every time she has the worst migraines/headaches isn't on days like this. What am I supposed to do?! I can't change the weather and we can't move to Tahiti. My husband works in Orem, Utah and we happen to like and need his job!
Thursday, March 19, 2009
Coming to Terms
Today I'm writing about a couple of things that have been at the forefront of my mind almost constantly in the last while. I have alluded to some of the challenges Brittany has had over the past couple of years with pain and other symptoms.
What I have not been very open about, and have a hard time verbalizing even to myself, is that Brittany has an autism spectrum disorder. This past summer, along with a bipolar diagnosis (also difficult for me to talk about), we also had her evaluated and received a diagnosis of Asperger's Syndrome. Hers was tricky to pin down because some of her symptoms aren't as obvious as others, and even within the dx of Asperger's there are different levels of severity. Brittany is incredibly high-functioning and intelligent, which you see a lot in Asperger's. I'm grateful that she is able to connect and interract with others, that she has empathy and compassion and is very tenderhearted towards others. Some with Asperger's don't understand what rude is; they are very factual and just call it as they see it (like "you stink," etc.). She enjoys humor and is really fun to be with.
The way my husband describes it is that she has just enough of it for it to be a frustration for her and for us. She doesn't naturally "get" social cues, especially the unspoken ones. She has told me this, and actually self-diagnosed a year or so before I finally went after an evaluation. We were talking about a boy about her age in our ward who has very obvious Asperger's and I was explaining why he does and says certain things, and how there are some things he doesn't understand. I mentioned social cues, and she asked me to explain that. When I did, she said, "I wonder if I'm autistic," and proceeded to tell me how she never knew what to do in groups of people. She also doesn't understand metaphors like "bite the bullet" and the like, which we Americans use all the time in conversation. She doesn't do well with not knowing what to expect and transitions are hard for her. She can be very rigid in needing things a certain way and gets into patterns or routines of how she does things, even if they don't make sense. Some of her patterns are that she has a "spot" on the right side of the dining room table where she dumps things; her backpack, any "cluttery" things of hers end up there. If it gets moved or cleaned up it's very distressing to her because then she can't find anything.
People with spectrum disorders tend to have a lot more physical complaints and symptoms than the average person, and I think that a lot of her digestive complaints and head pain may be associated with this. There is a connection with her migraines and the bi-polar; when she goes into a depressive cycle or peaks in a manic rage she gets the onset of a horrible, horrible migraine. Her physical symptoms have been so debilitating over the past few years, and it has been so hard for me to watch. . .especially because it has been so difficult to get relief for her.
I think we have the right mix on her meds for the bipolar, and she is doing much better with that. It took some tweaking to get it right, and I have felt over the past few weeks like "Oh, THERE you are!" and it's been so good to see her be more herself (one of the meds was too high and had a numbing effect).
School has been very stressful, and I've found myself to a point of wondering whether she is going to graduate next year and whether I should just encourage her to get her GED and go to community college from there. Almost nothing about the structure of high school works for her. Her most functional times are afternoon through late at night, not morning to early afternoon. I've tried everything to change that, but biologically she is just not built for mornings. She has trouble staying on top of 8 different classes, adjusting to 8 different teaching styles, and balancing that with all the other aspects of being a teenager.
Some days I find myself very worried about her future and how she will function. Other days she seems so "normal" and "fine" that I think I'm worried about nothing. Then we hit a crisis point where her frustration level has built and explodes and I think I must be crazy to think that everything will turn out fine.
Coming to terms. It's what I'm doing, what I've been doing, what I've been avoiding, what I can't seem to be able to do. It's what I have to do. And along with that is figuring out what expectations to let go of and how to best fill her needs in the ways that are most effective for her. I have to accept that I can't "fix" Asperger's or make it go away. I'm a fixer and I don't like having to accept when something can't be fixed. It's hard for me to accept the saying "It is what it is." I've been fiercely protective of her privacy because I haven't wanted her to be labeled or ostracized, but really maybe I've been more fiercely protective of myself, and by doing that have robbed her by pretending everything is "fine."
What I have not been very open about, and have a hard time verbalizing even to myself, is that Brittany has an autism spectrum disorder. This past summer, along with a bipolar diagnosis (also difficult for me to talk about), we also had her evaluated and received a diagnosis of Asperger's Syndrome. Hers was tricky to pin down because some of her symptoms aren't as obvious as others, and even within the dx of Asperger's there are different levels of severity. Brittany is incredibly high-functioning and intelligent, which you see a lot in Asperger's. I'm grateful that she is able to connect and interract with others, that she has empathy and compassion and is very tenderhearted towards others. Some with Asperger's don't understand what rude is; they are very factual and just call it as they see it (like "you stink," etc.). She enjoys humor and is really fun to be with.
The way my husband describes it is that she has just enough of it for it to be a frustration for her and for us. She doesn't naturally "get" social cues, especially the unspoken ones. She has told me this, and actually self-diagnosed a year or so before I finally went after an evaluation. We were talking about a boy about her age in our ward who has very obvious Asperger's and I was explaining why he does and says certain things, and how there are some things he doesn't understand. I mentioned social cues, and she asked me to explain that. When I did, she said, "I wonder if I'm autistic," and proceeded to tell me how she never knew what to do in groups of people. She also doesn't understand metaphors like "bite the bullet" and the like, which we Americans use all the time in conversation. She doesn't do well with not knowing what to expect and transitions are hard for her. She can be very rigid in needing things a certain way and gets into patterns or routines of how she does things, even if they don't make sense. Some of her patterns are that she has a "spot" on the right side of the dining room table where she dumps things; her backpack, any "cluttery" things of hers end up there. If it gets moved or cleaned up it's very distressing to her because then she can't find anything.
People with spectrum disorders tend to have a lot more physical complaints and symptoms than the average person, and I think that a lot of her digestive complaints and head pain may be associated with this. There is a connection with her migraines and the bi-polar; when she goes into a depressive cycle or peaks in a manic rage she gets the onset of a horrible, horrible migraine. Her physical symptoms have been so debilitating over the past few years, and it has been so hard for me to watch. . .especially because it has been so difficult to get relief for her.
I think we have the right mix on her meds for the bipolar, and she is doing much better with that. It took some tweaking to get it right, and I have felt over the past few weeks like "Oh, THERE you are!" and it's been so good to see her be more herself (one of the meds was too high and had a numbing effect).
School has been very stressful, and I've found myself to a point of wondering whether she is going to graduate next year and whether I should just encourage her to get her GED and go to community college from there. Almost nothing about the structure of high school works for her. Her most functional times are afternoon through late at night, not morning to early afternoon. I've tried everything to change that, but biologically she is just not built for mornings. She has trouble staying on top of 8 different classes, adjusting to 8 different teaching styles, and balancing that with all the other aspects of being a teenager.
Some days I find myself very worried about her future and how she will function. Other days she seems so "normal" and "fine" that I think I'm worried about nothing. Then we hit a crisis point where her frustration level has built and explodes and I think I must be crazy to think that everything will turn out fine.
Coming to terms. It's what I'm doing, what I've been doing, what I've been avoiding, what I can't seem to be able to do. It's what I have to do. And along with that is figuring out what expectations to let go of and how to best fill her needs in the ways that are most effective for her. I have to accept that I can't "fix" Asperger's or make it go away. I'm a fixer and I don't like having to accept when something can't be fixed. It's hard for me to accept the saying "It is what it is." I've been fiercely protective of her privacy because I haven't wanted her to be labeled or ostracized, but really maybe I've been more fiercely protective of myself, and by doing that have robbed her by pretending everything is "fine."
Wednesday, March 18, 2009
Sunshine on My Shoulders Makes Me hApPY!!
Oh, the sunshine is wonderful. It's amazing what it does for my outlook and sense of well-being! It's really much easier to feel that all is right with the world on a beautiful, sunny day.
I don't mind being able to wear short sleeves and flip-flops when it makes sense, either. :) Yes, I wear them when it's cold, too! I had an epiphane a couple of times this past winter when I actually wore socks out and realized that I really was much warmer. As a general rule I just don't like socks, so I don't wear them. I HATE the way they feel around the house; I'm almost always barefoot. Just not pregnant, LOL.
I don't mind being able to wear short sleeves and flip-flops when it makes sense, either. :) Yes, I wear them when it's cold, too! I had an epiphane a couple of times this past winter when I actually wore socks out and realized that I really was much warmer. As a general rule I just don't like socks, so I don't wear them. I HATE the way they feel around the house; I'm almost always barefoot. Just not pregnant, LOL.
Saturday, March 14, 2009
Shane's Eagle Pics, Finally
Okay, I know I didn't post the pictures when I swore I would last time, but thinking I was getting better only lasted a few hours when I developed a really bad ear infection. And, I needed help getting pictures off the cameras, which took longer than the MINIMAL TIME I spent on the computer over the last several days! Minimal, I tell you. . .only long enough to surf Facebook for a FEW MINUTES, Debbie! LOL :)
Shane's Court of Honor was on March 1. It was a lot of work to get ready, but it really went well. We found ourselves in the unique position of having it announced in three different wards, since our old ward was dissolved and redistributed. It was a very strange feeling, like he was a scout without a troop or something. We were very thankful for the great support we had--we had a really good crowd and even had to pull out extra seats, between former ward members, extended family and friends. We even had support from our new ward, who barely knows us.
Brittany was a lifesaver! She took the initiative in helping set things up, took pictures before it started, ran the camcorder during and led the music. Her friend Elisabeth took over the camera after it started. I was very grateful for Brittany's support; I was so tired by then!
Shane did a little freak-out on us and disappeared 45 minutes before it started, while we were setting up. He texted Kelly and said he just had to get away, and we were like, "You kind of need to be here!" He was freaking out about so much attention being directed at him, and thought we were going overboard with everything, which we really weren't. He just had never seen all the work that goes on behind the scenes to put one of these on. I think we did a nice job, but as far as displays go I've seen people go a lot more elaborate than we did; that aspect was pretty low-key. We had a table for his Eagle Project, which was constructing storage shelves for a nonprofit organization here in Orem called Kids On the Move, which provides early intervention for infants/children with developmental delays. We had some framed pictures (one of which has Shane rolling his eyes as he gave me the obligatory Mom hug after getting one of his awards; I couldn't resist!), a laptop playing one of his movie trailers, and a table with things representing his different interests.
Something that we did that I haven't seen a lot in other courts of honor is that we had opening and closing songs. Shane's best friend Nathan had that at his Court of Honor, and I thought it added a really nice touch so we followed suit. Four of Shane's cousins did the Color Guard, ranging in age from Cub Scouts through Scouts, and one of his friends from the troop conducted it. The speakers were all from our old ward--a brother who is a Silver Beaver, Shane's Young Men leader and our former bishop. Shane presented mentor pins to three men from our former ward who have been strong positive influences for him in scouting. One of them is currently in Thailand for work, but sent an email to be read. That meant a lot to Shane, because this brother was literally the only person who kept him hanging in there at one point. At Shane's request, Kelly administered the Eagle Oath and that was really cool. My brother Fred read the story of The Eagle and The Chickens and then invited all eagles to the Eagle's Nest, which ended up being huge! It was really cool to see Shane join them and sit next to my husband in the nest.
We had a little miracle happen in connection with this. Kelly's dad told Shane several years ago that he had something special to give him when he earned his Eagle. He died about 18 months ago and we never knew what it was he wanted to give him. Of course that was something that Shane wanted presented at the Court of Honor, so Kelly decided to give him a combat knife that his dad had given him several years ago. He had a feeling that was the right thing to give him (Kelly's dad was a retired Army colonel and served several tours of duty, including the German occupation after WWII, the Korean War and two tours of Viet Nam). Then about a week before the court of honor, Kelly was talking to his mother and she said that she had gone out to where his dad's tools were in the garage and found a knife in a sheath with "Trooper" burned into the sheath. "Trooper" was his nickname for Shane. She sent it in time for the court of honor and it turned out to be almost identical to the knife Kelly was going to give him, and we feel that that was what his dad had intended. We definitely felt his presence and influence in the weeks preparing, and that he was very aware of this milestone in Shane's life. One thing that Kelly reminded Shane of when he presented it to him was that Dad always had his own Eagle Award displayed in his medal case with all of his military awards, and his Eagle had the place of honor. He was highly decorated, and he always made a point to tell the boys he worked with in scouts that out of all of his medals, his Eagle was the most important to him.
Kelly put together a slide show to the song "Faith" from the TV series Enterprise. The lyrics to the song really apply to Shane and his experience, about not letting anything break him down. He has come through a lot and really hung in there through some tough peer and ward experiences. I'm grateful that he chose to finish and achieve this award, and I think that as time goes on he will be increasingly glad that he did, also.
Tuesday, March 10, 2009
Sick and Addicted
My name is Heidi, and I'm a Facebook Addict.
That's my biggest excuse for why I haven't posted about Shanes Eagle Court of Honor yet. . .I'm not on there all the time, but when I do get a minute to sit down at the computer, that's where I go first, presumably "just for a minute." Then an hour or two later I realize I'm still on there! I've even sat down before going to bed and had the same thing happen, when I was exhausted! It's bad.
My other excuse is that I have been sick this past weekend. But really, Facebook is the main reason.
I hereby pledge to blog about the COH tomorrow and to post photos HERE, before I post photos on Facebook!
That's my biggest excuse for why I haven't posted about Shanes Eagle Court of Honor yet. . .I'm not on there all the time, but when I do get a minute to sit down at the computer, that's where I go first, presumably "just for a minute." Then an hour or two later I realize I'm still on there! I've even sat down before going to bed and had the same thing happen, when I was exhausted! It's bad.
My other excuse is that I have been sick this past weekend. But really, Facebook is the main reason.
I hereby pledge to blog about the COH tomorrow and to post photos HERE, before I post photos on Facebook!
Wednesday, March 4, 2009
Smad
No, that's not a typo. In the immortal words of Sookie from my favorite TV show ever, Gilmore Girls, "I'm sad. I'm mad. I'm. . .I'm SMAD."
Why am I smad? It's relatively small in the grand scheme of things, but frustrates me every time I go through the checkout line at the store. My favorite chewing gum always gets cancelled! The one I've been consoling myself with is Trident Sweet Mint Twist or something like that, and it's been GONE for about two weeks. I settled on that one after my all-time favorite Vanilla Mint Trident Splash disappeared off the shelves! That one upset me as much as when they cancelled Gilmore Girls.
What is a girl to do?!
Why am I smad? It's relatively small in the grand scheme of things, but frustrates me every time I go through the checkout line at the store. My favorite chewing gum always gets cancelled! The one I've been consoling myself with is Trident Sweet Mint Twist or something like that, and it's been GONE for about two weeks. I settled on that one after my all-time favorite Vanilla Mint Trident Splash disappeared off the shelves! That one upset me as much as when they cancelled Gilmore Girls.
What is a girl to do?!
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