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."

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.

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.

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!

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?!

Will This Ever Be Ready!

Tomorrow is Shane's Eagle Court of Honor, and I can't freakin' BELIEVE how much work it is to get everything ready! We're making good progress but there is still a LOT to do to tie everthing up.

I ordered a cake from Costco yesterday then went and picked it up today and went to Wal-Mart AGAIN (I feel like I'm living there again lately), got home and realized I had forgotten the plasticware and paper plates. grrrrr. So guess where I'm headed later!

I think it's going to be really nice, though! Kelly put together a slideshow to the themesong from the TV series Enterprise that just fits Shane and his experiences perfectly. I still have a lot to do with pictures (decided that putting a scrapbook together this late in the game is insane so I'm just saying no to that, but I need to put something together that showcases his Eagle project) and we're fine-tuning the programs.

My brother Fred is going to read the story of the eagle and the chickens, and we're framing a copy of it to give to Shane. If you've never heard it you can find it online, and I will also post it here sometime in the next few days. It's very inspiring to anyone, not just an eagle scout.

Well, I'm going to catch a quick catnap and then jump back into the madness!

Swingin' Times at the Senior Center!

Yesterday I had a phone message from a grandma in our old ward who is very involved at the Senior Citizens' Center in our community. She hosts a variety show every month and was having trouble getting a pianist and asked me if I could help out--TODAY. I got the music last night, went over it this morning and decided what I could handle on such short notice and what would have to be done A'Cappella.

I have to tell you about this lady. She is absolutely hysterical; it usually takes her 5-10 minutes to answer a question because when she starts talking she gets reminded of something else that she then talks about and sometimes she ends up back round to the original subject. She likes to sing for her testimony on Fast and Testimony Meeting. She totally cracks me up! In some ways she reminds me of my Grandma Thompson (Grandma didn't sing but she was a hoot in other ways) and I think that's one reason why I feel so much affection for Margaret.

So when I got to the Center I couldn't find her because she didn't think to tell me where they were practicing; it wasn't in the gym where they serve lunch and they had two ladies with guitars already performing. Finally tracked her down, and when I came in she was going over the program with the performers. One of the men was particularly full of himself, shaking his head at everything, and informed me that I was NOT accompanying him. I was like, "You're right; I'm not!" He was looking pretty sharp with his pressed black pants, white turtleneck and cell phone holder attached to his WHITE BELT WITH MUSICAL NOTES PRINTED ALL OVER IT!! After the group cleared out I sat down at the piano to run through a few songs and he treated me to an impromptu performance, after which he said, "No offense to your piano playing, but if you're the kind that just plays as it's written it won't work because you're supposed to follow me." So spunky me, I said, "Ahh, you like to take artistic license! I do follow the singer, but I was given this last minute so I would have said no anyway because it wouldn't be fair to me OR to you." He then proceeded to tell me that he and his wife are professionals because THEY get paid for singing at the Centers, and told me of an audition he went to for a musical many years ago where the pianist was just terrible and so he requested to sing without the piano. The director said, "So you think you're that good, huh?" and he said, "Yes, I am," smoked the audition and landed the lead role. And I thought male ego peaked during the teenage years! :)

I was sitting in the lunchroom for about 15 minutes before the variety show and it was so touching to me to watch the people around me. Some of them just cracked me up--they had decorated the tables with Mardi Gras beads and masks because today was Fat Tuesday, and one little old lady sat there with one of the huge feathery masks on the whole entire time. A lot of them were wearing the beads. Every now and then when a favorite song was played, one or two couples would get up and dance, and at one point a couple of ladies got up and danced, too. They really respond to the music!

I played old love songs for about 15 minutes as they got their lunches, and after finishing one of the songs I heard, "That was beautiful," and looked over to see a little man with an oxygen tank seated close to the stage. It really touched me how much a simple thing like providing some meager piano playing out of a simplified book can lift someone's spirit.

As I watched the little couples dance, I thought what a beautiful thing it was to see those little men still holding their wives tight and dancing with them. THAT is true love!

It was a really neat thing to see Margaret in her element. She spends every day socializing at the center and talks about it a lot at church. People giggle a lot when she raises her hand in church because of how she rambles and some of the funny things she does, but I have to say that watching her today was really something. She is a leader there, and people look to her. I saw faces light up as she greeted people, she got a more comfortable chair for the man with the oxygen tank. She looked absolutely beautiful in her dress. She really shines, and it's wonderful to see her doing what she can in her way to reach out to people!