Friday, September 30, 2011

Moving On

I just wanted to let you know that I'm done venting and you will be safe to return soon for our regularly scheduled family updates that don't scare people. I figure I have probably worried some friends and family, offended others, and bored the rest.

I actually feel better having purged my deepest darkest worries and concerns. (A little exposed and vulnerable, perhaps, but better nonetheless). It was a surprisingly productive exercise for me to write out my biases and frustrations on "paper". Through the blessing of blog-therapy I was able to finally dig all the way down to the root of three years of underlying tension and resistance that is all bubbling to the surface now that my back is against the child development preschool wall. And your insights and support in response have been invaluable. Thank you.

This last week I have been praying to know what I should be focused on for this weekend's upcoming General Conference, what inspiration I should be seeking and where my head should be during the sessions. Well, golly gee willikers, I do believe I have received my answer. I love that the Lord answers prayers. I just don't always love how He answers them!

Pity

Tanner: Mommy, I feel sorry for you.

Mommy: Oh really? Why?

Tanner: Because you have faith in a girl who doesn't get up in the morning when you ask her to.

Once upon a School Picture Day

Little Princess...
And the king cobra.

Thursday, September 29, 2011

Jaded

My neuroses regarding Crew's future go well beyond my natural maternal protective instinct for my children. I find that my life's experiences are clouding my hopes and expectations for what lies in store for us when we invite more strangers into our lives for the sake of Crew's well being.

My 29 year old brother has Asperger's Syndrome. He spent a painful childhood and adolescence being shuffled through an inadequate educational system that didn't understand him. He endured years of testing and shrugged shoulders. Children were unkind; I showed up on a few doorsteps as a teenager to go nose to nose with some vicious little monsters (and their ignorant parents). An official diagnosis was late in coming... at 16, maybe too late for my parents to capitalize on targeted treatment. (Incidentally, the bus driver for special ed summer rec at our school growing up was dismissed and arrested for guess what? Molesting the children in his charge. Luckily, my mom chose to drive my brother that summer.)

When I lived in New York, I worked as a supervising care specialist in a state group home for mentally and physically challenged adults. I saw first-hand how bureaucracy came first; the needs of the residents always came last. While I worked alongside some very compassionate and qualified employees, I also came across several very disturbed individuals who had no business being allowed near God's most special children. In fact, I was the whistle blower on one occasion to abuse that I witnessed first hand. This employee was twice my size and twice my age, but my mama bear instincts were already well honed and I marched purposefully into battle on behalf of our residents to end his career in special education. We won. Beyond that, the funding was woefully inadequate (even way back then, and in the state with the highest taxes in the nation) and we were always understaffed. Two staff members for 15 full-time extremely-high-needs residents. That of course included all housekeeping, cooking, feeding, therapy, medication dispensing, behavioral interventions, bathing, yard work, outings, paper work, and a whole lot more. It was impossible to meet the needs of our clients. With all of our other responsibilities, there was little time to work with the residents to help them improve their quality of life. It took less than a year of working intimately within "the system" for me to come to a personal knowledge of how broken that system really is. I don't have any solutions for this particular issue, by the way. Just a desire to keep my children as far away from institutionalized care as possible.

I know many people who have worked in private and public day care facilities around the country. Oh, the first-hand horror stories they have shared... When it comes to my precious toddlers, I'd rather pay a capable well-trusted friend/neighbor any day over some stranger with a state license. (Too many catfood-in-the-newborn's-ear personal anecdotes from friends.) In fact, I've done it. I worked part-time in an orthodontist office for almost 5 years after Kinley was born. Tanner was almost 2 when I quit to be a stay-at-home mom. No guarantees either way, I suppose, but I like my odds better.

Let us not forget my NICU battles. Or the bureaucracy and incompetence we dealt with regularly for those long months. Cough, cough, I'm not even going there.

So here I am with a special needs child. What most people don't know is that this isn't really my first special needs rodeo. Putting all of my history together in one dysfunctional folder of experience, is it any wonder that I'm jaded and distrustful? I am trying so hard to do right by my little guy, but this whole transition is really hard and frightening for me. For crying out loud, he can't even communicate to tell me if something is wrong or if he is being mistreated. I don't know this preschool teacher from Adam (or Eve), nor the bus driver. It will take time for me to develop a relationship of trust. I love Julie and Kathleen. I can learn to love again... maybe.

I believe there are gems and trolls that work in every establishment, private and public. The only thing I know for sure is that the responsibility for Crew's advocacy lies upon the shoulders of his parents alone. I am now caught between a greedy private rehabilitation facility and a potentially inadequate, state-funded preschool. One is more than eager to take my money and will treat Crew as often as our check continues to clear. The other is already openly laying groundwork to decrease my expectations based upon limited funding and resources.

Gah.

Wednesday, September 28, 2011

Speech Smeech

On the long (and very loud) drive home today, I decided that we will not be evaluating Crew for speech therapy at the rehab clinic after all. I think that particular therapy will come fairly organically at preschool. Instead we'll focus our limited resources allocated for private rehab on PT and OT. Our top priority is getting. this. kid. walking. After that... well, ask me then.

Thanks everyone for your kind words the other day. I love Crew and I worry about Crew. I want to give him the best chance for success in his life and I don't want him to be hindered by a lack of effort on our part. Our therapists are constantly telling me that I am by far the most involved, most dedicated, most plugged-in parent that either of them have on their crowded routes. I don't tell you that to brag (I hope you know me better than that); I tell you that because I don't believe it. I find that assertion so unlikely and wonder if they even know me at all. And if it is true, then I feel really sorry for the other children on their docket because I know I'm not doing all that I can and should do for Crew.

Anyway, enough about that.

I'm now trying to figure out some sort of schedule that doesn't land us all in a mental ward. First up, I have to decide whether Crew attends preschool from 9-11 or 11-1. Bearing in mind that Tanner gets on the bus for afternoon kindergarten at 12:35 and Crew's wake-up schedule and breakfast temperament fluctuate. So if we choose the later one, it conflicts with lunch and he may arrive home too tired to eat. Or worse, take a power nap on the way home and then cry all afternoon from exhaustion and food striking. So neither is perfectly convenient for our family.

Next, Justin and I are locking horns over whether our non-verbal tiny and defenseless toddler will ride the bus to preschool. Egads. (Did my description of the controversy tip my hand on where I fall in the debate?)

Next, I've been informed that Crew will be on D-track while my other kids are on A-track. I can't decide if that's good thing or not. And super duper fun for Tanner getting dragged across town every morning that we go for rehab at the clinic, however often that ends up being. And maybe we don't do rehab as often when both big kids are off track??

Oh yeah, and we have to figure out how often to do rehab. Our insurance company informed us this afternoon that the hefty individual deductible that is scrawled all over our paperwork and their patient-resource website is actually incorrect due to a vague little trick of wording in the small print. It's double that amount. Well, that certainly changes things. And of course starts all over again in January.

I'm a little flummoxed at the moment trying to figure out a functional plan for what we have gotten ourselves into. I've been so excited about Crew's upcoming adventures that I never really took time to ponder the logistics. I pray that we find a sensible way to navigate through all of these nagging little details.

PT Eval

Hmmmmm.....

HMMMMMMMMMmmmmmmmm.....

I have pictures that would make you believe that Crew's PT eval at the rehab clinic this morning went very smoothly and that he had a great time. The pictures would be lying through their teeth.

PT is not his favorite therapy. Charming he was not.

Our new therapist's name is Megan. I hope I can remember it.

PT Megan thinks that maybe we can have him walking by Christmas.... but surely by next summer.... probably.

Hmmmmm.....

HMMMMMMMMMmmmmmmmm.....

I'm still unclear as to what set him off on his grand finale end-of-session meltdown, but suffice it to say that as I was carrying the back-arching, balled-fisted, shrieking little demon out to the car over my shoulder (along with the diaper bag, camera bag, and walker), PT Megan's parting invitation to "schedule his next appointment anytime" seemed a little unenthusiastic.

Monday, September 26, 2011

OT Eval

We took Crew in for an evaluation with a private pediatric rehabilitation facility this afternoon. Just having "Primary's" attached to the name of the clinic made me resistant, but all skepticism was swept away in the first few minutes of our arrival. I was in love from the first moment. They were sanitizing every inch of climbing equipment in our room as we entered, we endured no waiting time, and the staff was pleasant, helpful, and clearly enchanted by Crew's darling personality. The goals our OT-to-be recommended were specific and useful and she pegged Crew's strengths and weaknesses intuitively. Crew charmed his way through the entire evaluation, exploring and showing off without inhibitions.

We have another two-hour evaluation later this week, this time for PT. Then we will see them again to evaluate for speech. We are hoping to come up with an intense and comprehensive treatment program for our little miracle man. Here is the situation: The state is only required to provide Crew with minimal intervention and support to give him "reasonable" quality of life. Crazy us, we want what is "best" for him. Ideally, down the road we would like to see him in a mainstreamed kindergarten classroom with just a few resources. So, now that he is transitioning out of Early Intervention, we will take whatever services that we can squeeze out of the special needs preschool and then do what we can to enhance his experience with private rehabilitation. It's not cheap (cough, cough) but at this point we feel it is time to capitalize on his current momentum. He is really on a roll these last several months, just exploding with new skills and motivation. I have been feeling for a while that he is finally in a position where he is ready to be pushed harder. He is curious and excited about the world around him.

It kills me to admit it, but I'm ready for more outside help with his therapy. The Early Intervention model in our school district is to teach the parent to be the therapist in the home. It has worked well for us for a really long time, but... I'm ready for some help. I feel like the weight of his delays rest squarely on my shoulders, always wondering how he would be doing if he had more outside intervention or a better mom. My worst fear is that if he had a different mother, he would be walking, talking, and fat as a pig by now.

He has seen some type of therapist about three times per month for the last year through the overloaded state early intervention program. Now he will be in preschool likely twice per week and rehab once a week. We're biting our fingernails with great expectations.

The Evidence of Things Not Seen

‎"When you have come to the edge of all the light you know and are about to drop off into the darkness of the unknown, Faith is knowing that one of two things will happen: There will be something solid to stand on or you will be taught to fly." ~~ Patrick Overton

Sunday, September 25, 2011

Boys Will Be Boys

Boys will be boys. Protective, loyal...I don't know what I would do without these two little monsters in my life. Who (besides Kinley and Justin) would fill my life with snuggles and sunshine? Who (besides myself) would embarrass me in public?

Saturday, September 24, 2011

Chicken Cordon Bleu

It's always nice when I can make a meal that satisfies the taste preferences of every palate living in my house. Chicken cordon bleu is just such a dish.

It's fun, it's fancy, but the home run is all in the secret sauce. My standard recipe calls for lots of extra secret sauce for two reasons:

#1. That volume of liquid keeps the chicken from burning on the bottom and sticking to the pan during cooking.

#2. It makes a mean gravy for my mashed potato side dish! Or rice, or whatever.
Ingredients
6 skinless, boneless chicken breasts
6 slices Swiss cheese
6-12 slices ham*
1/2 cup all-purpose flour
3 tsp paprika
1/2 cup butter
1 and 1/2 cup unsweetened white grape juice
3 tsp chicken bouillon granules
2 Tbs flour
1 and 1/4 cup half and half

Directions
Cut 12 pieces of baking string, each about 12 inches long. Set aside.

Place chicken breasts one at a time inside a freezer bag and pound the heck out of them until they are about 1/2 inch thick.

Fold the cheese into quarters and hide inside folded pieces of ham. This will help keep the cheese inside the chicken when it's cooking. Use the cooking string to fold the chicken up. Tie to secure. Trim extra length.

Mix the flour and paprika in a bowl. Coat all six of your cute little chicken packages liberally with the flour and paprika.

Melt butter in a large skillet over medium heat. Brown the chicken on all sides. Add juice and bouillon to the pan. Reduce heat to low, cover, and simmer for 35-40 minutes. Transfer chicken to a warm platter.

Strain liquid through a regular kitchen strainer/colander to catch any globs of cheese that have escaped. Put the clean drippings back into the pan.

Mix flour with the half and half. Whisk this new concoction into the skillet with the remaining drippings, juice, and bouillon. Simmer, stirring often until sauce is thickened and "floury" taste has disappeared, approximately 5 minutes.

While your sauce is simmering, cut strings off the chicken and get ready to plate your meal.

Serve the sauce on top of the chicken. Use additional sauce for potatoes or rice -- you won't be sorry!

*It all depends on the size of the ham. The little medallions in most lunch meat containers are pretty small, so I use two if that's the route I'm taking.
For more of our family's most favorite recipes, please visit Vittles Divine.

Friday, September 23, 2011

Guttersnipes

We enjoyed a warm Indian summer rain recently and our children made the very most of it.Hey! Wait for me! I wanna sing in the rain too!
Because being a kid so totally rocks.

Thursday, September 22, 2011

Wednesday, September 21, 2011

Tuesday, September 20, 2011

Crew's First Invitation

Crew was invited to his very first birthday party! He had a wonderful time, just being with his (much taller) peers. Friends are the best.

(Playing ring around the rosie)
Thanks, birthday boy!

Fickle at Five

Tanner: Mommy, may I please have a drink with my lunch?

Mommy: Sure, here you go. Have some apple juice.

Tanner: Apple juice? No! I hate apple juice!

Mommy: What are you talking about? You love apple juice.

Tanner: No I don’t! It’s so gross! It’s disgusting! I hate apple juice!

Mommy: You have always loved apple juice and I have already poured it into the cup.

Tanner: Please PLEASE don’t make me drink it! Give it to Crew! Can I have milk instead?

Mommy: Hmmmmm… ok, I suppose Crew can drink it. Here's your milk.

Tanner: Thank you… Mommy?

Mommy: Yes, Tanner?

Tanner: When I’m finished with my milk, can I have some apple juice?

Saturday, September 17, 2011

Scrapping?

It's been a very long time since I have done any digital scrapbooking.

I dusted off my skills this morning just long enough to create this birth announcement for my friend Kerrin. It was so much fun; I have really missed it. (And little Will is so cute!)

Friday, September 16, 2011

Being Big

Crew likes do to everything that his siblings are doing, which now includes sitting up at the counter and coloring. He likes being a big boy.

Thursday, September 15, 2011

Efficiency in All Things

Megan: Hey, did you like that song I sent to you this morning?

Justin: It was a busy day, so I didn't have time to listen to it, but I googled the lyrics. It was very nice. Thank you.

Megan: You were so busy that you... googled the lyrics instead? Seriously? Wow, you're efficient in everything, you romantic devil!

I love Justin!

The Force is Strong With This One

"I've been waiting for you, Obi-wan. We meet again at last. The circle is now complete. When I left you, I was but the learner. Now I am the master."


Wednesday, September 14, 2011

Tuesday, September 13, 2011

Mischief

Now that Crew is almost three and his receptive language has been increasing so steadily and so obviously, discipline has been getting a little more intense for our pampered prince.

The other day when he threw his bowl of peas across the kitchen, I pulled him out of his high chair to pick. up. every. single. pea. He was so agreeable about the whole thing that I dared to take my eyes off him. When he declared himself finished, his bowl didn't look quite as full as I was expecting...Ah. I see. Of course. Though....the manual dexterity necessary to pull off this passive aggressive little stunt made me smile.

Monday, September 12, 2011

Cousins

There is just something special about spending time with cousins.  Some of them blew into town last week and spent a few days with us.  Very very fun!


Family ball.

Sunday, September 11, 2011

Who, Me???

Remembering Our Way

People choose different ways to remember the events of September 11th. For us, we watched video/pictorial tributes set to country music and talked about the events as a family. My kids disappeared for a while and just brought these pictures to me and asked me to "please post them on the blog right this minute."

Hmmmm....

Well, this is a family blog so they get a voice when they want it, however gritty the subject matter. I apologize in advance for the graphic and violent nature of their drawings, but... it was a graphic and violent experience for our country.

Kinley:
Tanner:

Have We Done Any Good in the World Today?

Saturday, September 10, 2011

Friday, September 9, 2011

I Can Die Happy

Kinley: You are the best mom in the world and I love you.

Mommy: Oh, thank you! Why do you say that today?

Kinley: Because you are nice and wonderful and you deserve for me to say it very often. I don't tell you often enough.

Melt. My. Heart. I can die happy.

Putting the LABOR in Labor Day

Nothing is better than fresh, sweet, corn cut right off the cob. And two willing kids to shuck it for me.MMmmmmmmm.....
Getting ready for a future American Idol.
Ahhhhh...... Now if only they would squish my raw meat for me. Because homemade burgers-on-the-grill go really well with fresh sweet corn.

Wednesday, September 7, 2011

Qualified

We recently took Crew to the district to be evaluated for special needs preschool. Our therapists had been filling our minds with visions of grandeur, wondering aloud whether he would qualify at all, considering how well he is doing. They were pretty sure he would qualify "but what if"... It actually made me nervous because we know he needs services of some sort and he will be losing PT Julie and Speech/OT Kathleen when he turns three in November. If he didn't qualify for the preschool, then...

Well, fortunately for us, we had nothing to worry about because Crew was on his worst behavior for his evaluation. He qualified with flying colors; it wasn't even a close call. For example: when she asked him where his nose was (something he has known and demonstrated for more than a year), he stared at her blankly like she was speaking Farsi; she wasn't. When she asked him to give her his shoe, he picked up a toy car and stuck it in his mouth. It was all I could do not to laugh.

In the end, I am glad that he qualified for the special needs preschool because we know he needs it and we know he will love it. And I am sad that he qualified for the special needs preschool for what I imagine are obvious reasons. We got exactly what we hoped and prayed for. Bummer.
Yes, that's Crew standing stably at the table with very minimal support. His confidence and balance are getting so good!
Crew wasn't shy about exploration.
He and Tanner roughhoused on the rehab equipment.
He may not walk, but this kid can get around!

Monday, September 5, 2011

Snack Time

This summer, Crew finally mastered the sippy cup. It's been nice for all of us. He is drinking a Naked juice in this picture (thanks for the recommendation, Uncle Jason!)I had to post this picture of Crew doing his famous "food flinging". He doesn't mess around when it comes to tossing his food far, far away from himself.

Big Talk from the Little Runt

Kinley: I think when I grow up, I'm going to be a midget. Not a REAL midget, but a midget like you...only taller.

Sunday, September 4, 2011

Goggle Boy

I'd like to introduce you to the newest Marvel Superhero: Goggle Boy. Faster than a speeding mouse, more powerful than a howler monkey, able to melt hearts with a single smile.

Friday, September 2, 2011

Our Great Escape

Justin noticed that I was starting to fray around the edges (it was hard to miss, especially when I said, "Justin, I'm fraying around the edges and want to run far far away. Forever.") He generously whisked us all out of town for a long detoxification weekend in Park City at the Hyatt Escala Lodge in The Canyons resort. It. Was. Heavenly. None of us ever wanted to come home.

If and when we ever lose our pennies-on-the-dollar insider access to these condos, our kids are going to be hating life at the Super 8.

We left our house after dinner on Thursday. After we unpacked and changed into pajamas at the condo, the kids put puzzles together at the kitchen table. Crew chased his dinosaur all around the livingroom. Roar.
Lazy breakfast on the balcony.
Though we have been to Park City before, there were several "firsts" that we experienced this time. First #1: Kinley finished a 150-piece puzzle all by herself.
First #2: Kinley swam independently in the deep end, showing daddy that the money he paid for swim lessons this year was worth it. First #3: Daddy verbalized/acknowledged without rancor that "the money we spent on swim lessons was worth it."


First #4: Daddy conquered the "swim diaper" all by himself.


First #5: we sewed micropreemie stillbirth diapers during our trip. It's our new thing and I love it. It makes me so happy and relaxed. I'd rather sew diapers than just about anything these days. The kids really got into it and Kinley was a woman obsessed. She slipped notes under my door in the morning: "what time can we start sowing?" I asked her whether she wanted to sow peas or carrots. I got the 8-year-old eye roll.

In the end, all I really needed to do was trace, pin, and sew. Kinley cut, ironed, turned right-side-out, and trimmed. Tanner was our pin-guy, but we amateurs were not allowed to call it a pin-cushion. He insisted that we call it by its proper name, the "pin-tomato." They both sat on my lap and sewed for a while. I forgot how scary the needle can be.
We made 20 diapers while we were in Park City. Some for the tinies and some for the smalls. These are a few of them; aren't they so pretty?
Justin wasn't very amused that he had to haul all of our sewing materials to the condo, but he changed his tune on our final night. The wind was howling and kept blowing open our balcony door. I loaned him the cord to my sewing machine to tie around the handles. Voila. Problem solved.
We took a walk. Stopped for a picture.
First #6: We rode the gondola up into the mountains. In the wintertime, this is some of the best skiing you can find in North America with 19 chair lifts and more than 4000 acres of ski trails. In the winter, they become miles and miles and miles of mountain biking and hiking trails (with a few lifts and the gondola). We had never seen them ourselves before. We took a ride up to see what all the fuss was about.
Tanner was convinced that we were going to plummet to our death at the bottom of the canyon.
Crew thought the entire excursion was very nice. He chilled all morning.
We all survived the gondola. In fact, after we rode it back down, we stayed on and rode it right back up and down again. At Tanner's request.
Beautiful views all the way up.
Little informational chalet at the top. (If you ever take the ride yourself, it may be helpful to know that there is also a restaurant at the top of the hill. I can't tell you how the food is, however, because we ate pack-along fruit snacks and oatmeal cream pies instead.)
We decided to take another lift higher up the mountain. Because one good ride deserves another. This was a one-way ride only and once we hopped on, we were committed to hiking back down. Bring it on, I say.
See this happy Tanner face? How was this less scary than the gondola? I turned around to take a picture of the rest of our family. I zoomed in with my camera to double check my suspicions, then I shouted, "Justin, PULL DOWN THE LAP GUARD!"
First #7: Justin waved and smiled for a picture. Without prompting. First #8: Justin never complained about my need for photo-documentation of our trip. Not once the whole weekend.
First #9: We took a family hike.
It was the best hike ever, very family-friendly. It was about 25 minutes, downhill with a gentle grade and lots of switch backs. Crew rode in style.
Our hiking route was partly shaded and thoroughly beautiful.
First #10: I didn't spend my whole vacation cooking. I didn't pack up endless ingredients and all of my familiar pots and pans because I'm afraid of the fancy Cuisinart cookware provided in the condos. We ate very simply: cereal, spaghetti, grilled cheese, and take-out pizza. And loved every bite. (Don't get me wrong; we eat simply very often at home. But I always feel like we need to eat all of our favorite and most special dishes when we are vacationing. It was really nice to not have the self-inflicted pressure this time).
Like I said, none of us ever wanted to come home. We swam, played games, sewed, hiked, read, and napped. It was the most relaxing weekend in memory. Justin is the best husband and daddy ever. I love you!!! THANK YOU for a memorable and rejuvenating family adventure!