Don't you envy us???

Frankly, I think a living room half-filled with boxes is quite charming. Wouldn't you agree?

On a positive note

Clara has stopped kicking the door and has been staying in her bed more consistently! I think she finally realized her bed is much more comfortable than the floor. Plus, she's been taking naps again as well (about four days a week). Knock on wood. Go Clara!

Avoidance Behavior

If you can't tell by the number of posts today, I am practicing avoidance behavior because I don't want to pack. Our house is a wreck with boxes everywhere, so I find seclusion by closing my eyes to the mess and focusing on the computer screen.

Further evidence of avoidance behavior: I decided to clean out the sandbox today.

My dismay at having a sandbox full of water (due to my forgetting to put the top on before several rainstorms) . . .
. . . is Clara's delight!
We had great fun, even after Clara sat right down in the water with her clothes and diaper on. My only hope is that the subsequent bath washed off any protozoa or bacteria or whatever-grows-in-stagnant-water junk off of her.

Okay. Back to packing.

I love Holland! (and I really did love it when I was there)

WELCOME TO HOLLAND

c1987 by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

The diagnosis dilemma

Michael and I have been discussing whether we should push for a diagnosis for Clara. As time passes, I feel more and more that her challenges and tendencies are autistic and dyspraxic. For those who don't know what dyspraxia is (and I didn't know before Clara), praxis is the "learned ability to plan and to carry out sequences of coordinated movements in order to achieve an objective," or, in other words, "getting our bodies to do what we want when we want them to do it" (Ripley 1, 2). Any time we use our bodies to get something done, whether it be answering a question or tying our shoe, we do it without having to slowly think about each step in the process. Professional athletes have good praxis, and those who are very charismatic or well-liked by their peers often do as well. Dyspraxia is "bad praxis", and for adults who have lost their praxis through stroke or accidents, it's called apraxia. For Clara, it means that she has a hard time coming up with an idea of something to do, e.g., "Hey, I think I'll climb up the slide now," and then planning and executing the action. (She might get the idea but then has a hard time figuring out how to move her body to do it.) This carries over into nearly all of her actions, whether it be pretend play with dolls, or on the playground, or with other children. That combined with a struggle to connect socially or feel overwhelmed sensory-wise around other children can make for a pretty tough situation. Still, she continues to improve and learn. She is most successful if I give her very specific instructions, such as instead of, "Clara, let's go outside," (as she stands at the top of the stairs) to say, "Clara, come down the stairs so we can go outside." I'm trying to find a balance between doing things for her and allowing her opportunities to come up with ideas on her own and following through with them.

I am hopeful and confident that with time she will grow more confident and daring as she has successful motor planning (praxis) experiences and positive social interactions. Anyway, I just don't know whether I should have her officially diagnosed or not. My hesitancies are that (1) insurance coverage can be a challenge for her later in life for services to help with autism, if that's what she has; (2) I don't want others to treat her differently or ignore her or expect less of her because of her challenges; and (3) I am afraid and nervous for how or if a diagnosis would change things. My reasons for wanting a diagnosis are (1) selfish because then I could have something to tell people as a "reason" for her aberrant behavior; (2) for relief, so I know exactly what is going on and I can move forward from there without feeling like I'm groping in the dark; (3) so others will be more compassionate; and (4) so I can remove feelings of comparing with other neurotypical kids and accept her completely for who she is.

Still, a diagnosis would do nothing more than name her challenges--the challenges would remain the same, as would the therapies and methods we are trying to use to help her. I don't know. But I do know that as time passes I am coming more and more to terms with it and feeling more at peace. My good friend Karisa sent me a beautiful story, which others have probably heard/read before, and I really like its concepts. I'll post it separately. I have been so focused on what she can't do that I recognize I need to look for the positive. Her special ed teacher, Annette, who comes over once a week, said, "You know, there are really only positives about Clara." And this is coming from someone whom Clara has tried to hit and who has seen Clara be her "thoroughbred" (as my dad says) self. It made me think, "Gosh, that's how I need to feel, too, instead of thinking, "Why don't we have a child who can do such and such." If I can be positive and look for the good, then I know that will help Clara when school and life are rough.

Bedtime

Lately, Clara's naptime or bedtime routine has gone something like this:

ME: Okay, time to go to sleep.

CLARA: I want to sing a song.

ME: What song do you want to sing?

At this point, if she doesn't say something, I'll start singing something. Tonight, I started singing "A Child's Prayer." She quickly interrupts me as I start singing.

CLARA: No no. Comb song.

I think Michael's and my versions are different--Michael apparently uses the melody of a Primary song and changes the lyrics to talk about combs. (No, I have no idea where or why she got the idea of a song about combs. She'll sometimes ask for any object in a song, like "pillow song," "candy song," etc.) Mine is a version of the Veggie Tales' "Oh, Where Is My Hairbrush?" song that I've only heard a few times.

ME: Okay.
"Oh I love my hairbrush!
Oh I love my hairbrush.
Oh how I love I love I love my hairbrush.
It is so cool,
It makes me want to drool.
Oh how I love I love I love I love my hairbrush."

It generally does the trick.

The Dance of the Flowers

I had to post a couple of these pics because my nieces are so dang cute. Eden, the oldest granddaughter, frequently organizes ballet performances at our family gatherings. Easter Sunday dinner at Matt and Tana's house was no different. I wish I had taken pictures of the incredible feast that Tana and her parents made for all of us, which was fabulous. So, after attending Matt and Tana's ward, a delicious meal, we finished off the day with a ballet concert. They continue to get more and more elaborate as the girls grow older and more graceful. Here is Eden as a rose, Cailey as a tulip, Brooke as a daffodil, Kendall as the jellybean thrower (hilarious), Faith and Rowan as backup flowers, and Clara as a jellybean-eating pitcher plant (okay, that was bad--I was trying to think of a carnivorous flower!) . I was proud of her for even getting in the mix for a few seconds at all. No child of mine can resist free candy.

Easter!

Here are some glimpses of our Easter weekend back in Atlanta. On Saturday we had a small Easter egg hunt with Michael's family in their backyard--fortunately Clara and her cousin Abigail were able to snatch some eggs before Michael's younger siblings did . . .


Check out my haul (I ate most of Clara's candy).

L'Anita and her daughter, Abby.

What a cutie!

Women at the Well

Here are a few pics from Women at the Well this last weekend. I got to sing a solo and in a trio--it was a wonderful conference and the Spirit was palpable.

Clara's Song

Michael wrote this poem about Clara and gave me permission to post it. It expresses so eloquently our hopes for the future.

You know yet hold
in silence now
the words she sings
with perfect tone.

I hear the song
you'll someday sing--
the words, your mother's;
the notes, your own.

Whatever you look for, you'll find it . . .

. . . or however that saying goes. It is so true! Last weekend I was at Hancock Fabrics and accidentally nicked the car next to me with the backseat car door while I was getting Clara in her car seat. I didn't realize I had done it until I finished and saw the man in the car next to mine open his door and look at his car . . . there on his (probably new) car was a small scratch the size of a pencil eraser. I said, "Oh my goodness! Did I do that?" and he replied, "Yes, you did." I asked him if he'd like my insurance, to which he said yes, and I (trying really hard not to cry) gave him the information as well as my phone number. After apologizing more than once, I got in my car and drove home, crying all the way (which of course made Clara start crying, too). I was so upset at myself and embarrassed and angry. With all the car problems we've had in the last two years, this was just the straw that broke the camel's back. Anyway, I've been waiting to hear from the guy, and I got a call tonight from his wife. She informed me that they're not going to file any claims and that she wasn't even sure it was from me and that it was really windy that day (which it WAS--incredibly windy), that she'd been in similar situations before, etc. etc. She was so kind and compassionate, and I thanked her profusely. I told her that I would pass the good deed on. So anyway, when so often I fear the evil in the world and worry about the future, experiences like these remind me of the great goodness and generous nature of so many, regardless of religion, race, socioeconomic status, etc. I am so relieved! And believe me, I will be doubly careful of that car door from now on.

I love split pea soup!

Good to the last drop!

My Two-Week Goal

I have felt a bit of spiritual floundering lately--not immersing myself in the scriptures but perusing them shallowly, feeling angry at Heavenly Father for all the challenges that Clara (and therefore I have, and Michael as well) has and for not blessing us with a baby, and then feeling angry and disappointed in myself for my lack of faith and discipleship. Since Easter is coming soon, I have set a goal to arise at 6:30 (Clara's banging can be my alarm clock) and have a morning devotional for half an hour. I know I should be doing this already, and I thought that Easter's pending arrival would be a great motivation. I taught sharing time on the Atonement today, and my own testimony grew of the Savior's living reality and love for me. Despite all my frailties, I know He loves me and that He knows all my pains and sorrows. I know I can be forgiven of my sins. And I know that the nearer I draw unto Him, the more I will feel the Spirit and the more it will sanctify me to handle the challenges that we've been given. I don't want to just survive (although lately that's how I've been feeling--"just survive!"): I want to endure well. I desperately want to show Heavenly Father that I will allow my experiences to temper and mold me in His image instead of resenting those refining opportunities and coveting someone else's situation. I am truly thankful for Michael and our wonderful marriage. I am also especially thankful to have a knowledge of the plan of happiness our Father in Heaven has laid out for us--to know that eternally, all will be made right, and that we are sealed together forever as long we live worthy of the fulfillment of those promises. I truly stand all amazed. We are richly blessed.

Getting Ready for Bed

Washing up . . . (I think this will have to be one of her last blackmail naked pictures since she's growing up . . . sigh)

Drying off (we call Clara in the towel "our little papoose," and when she wants to be wrapped up after her bath she asks, "Papoose? Papoose?") . . .

Brushing her hair (time for a haircut soon!) . . .


Having family devotional . . . the after-bath hairdo . . .

Snuggling with Daddy . . . Good night!

Aargh!!

This morning I was spitting mad. Clara woke up at 5:00am and was banging on the door intermittently for over an hour (between my efforts to put her back in bed). I am so frustrated and feel like this is one more thing that shows (a) I am a terrible mother and/or (b) Clara is still too developmentally behind to handle this. I am exhausted, Clara is exhausted, and we're both cranky. Because she is already sedentary and has low muscle tone, being sleepy on top of it just makes it one vicious cycle. The whole nap thing is also confusing because I don't know if her taking a nap is making her get up too early (although yesterday she refused to take a nap, which makes me think that she is overtired and that is why she got up so early). Or maybe I should just put her back in her crib because that would solve the whole situation. The only two downsides to that are (1) we'll have to try it again eventually, and (2) I feel like I'm pulling her around by putting her back in her crib, etc. The sleeping, the hitting, the saying "shoo"--I just don't think I'm cut out for this job. I was a much better department manager at BYU.

Caught in the act

Here is where Clara has been sleeping during her naps--right next to the door with her head pressed against it (which made it rather hard to get these pics). It might look cute, but it is not so adorable at 5:45 in the morning when she lies next to the door and bangs on it. (Note: The stuff in the background is Clara's disassembled crib, which I am very tempted to reassemble.)

On a walk with Daddy

A Day Trip

Today we drove to Clark's Hill Lake and had a lovely picnic. The weather was gorgeous--blue skies, cool breezes, and the sun on our faces. We took a little hike and enjoyed "getting away from it all." Like so many cities in the South, here you are only a day trip away from a picturesque spot.