Thursday, October 6, 2011

Marine kids think differently

It's interesting to me the ways that a personal family culture influences language and thoughts.  I see it happen all the time in our family but don't pay too much attention to how funny it is most of the time.

Today Amelia had to do some chores before breakfast (empty silverware from the dishwasher and gather all the towels for washing).  She can't reach some of the towels, so a while ago she devised a way to get them off the shower curtains and tall places by using a step stool and a pair of my really long grilling tongs (2 feet) from back in the day when I was still working as a Chef.  She pulls them down and sticks them in a big tub and then scoots the tub out to the laundry room to be washed.

About half an hour after the towels were started, she all of a sudden exclaims, "MOMMY!  That brown towel is camouflaged!  It's on the brown chair and I didn't see it!"  She starts giggling to herself and talking about how funny it is that a towel is camouflaged and I am thinking how funny it is that she didn't just say "hidden". 

Sunday, September 25, 2011

Vietnam Vets: 1st Battalion, 9th Marine Division - "The Walking Dead"

It's not often that you get a chance to meet a part of living history face to face.  This weekend I had both the privilege and the honor to do just that with this amazing group of people.

Through a serendipitous set of circumstances, my husband was invited this weekend to bring us to dinner with the 1/9 Walking Dead Veterans at Traditions while they were here visiting Parris Island.

I told Amelia we were going to dinner with some very special people and we would have to be on our best behavior and use our best manners.  I explained a little bit about them to Amelia, at least in small terms a 5 year old could understand easily.  I had been promising her for some time that one weekend when we had enough time, I would blow dry her hair straight (never been done and we wanted to try it).  After I told her where we were going, she asked me, "Mama!! Could you please blow my hair dry straight?!?"  Very excited and wanting to do something special for this dinner.  We laid out really cute dresses for Olivia (navy blue polka dot) and Amelia (pink sweater dress)- I wish I had the foresight to take pictures.  I pinned a piece of my jewelry to her neckline and Amelia just looked so grownup all of a sudden.

The power went out after a lightening strike while I was drying Mia's hair, and we finished getting ready and went on to dinner by emergency light.  As we were getting out of the car, I told Rafe I wasn't sure I could get through the night without crying.  Olivia and Amelia were amazingly good, but still restless so I wasn't able to hear or be involved in very many conversations.  I listened to bits and pieces float around me, words out of history, battles with place names.  We ended up sitting at the back and I encouraged Rafe to sit up front without us, as there wasn't room for all four of us at any one table.  I can not tell you how glad I am that he did that.  I was able to be there to see him applauded for his role in their weekend; and to listen to many, MANY compliments about my husband and children.  Lights finally came on and the girls and I left shortly after that.  Living on base is great... we only live a few blocks away from Traditions, so Rafe walked home a few hours later.  We were invited back again today for a picnic after Mia's soccer game.  Amelia kept saying, "What a special night, Mama!!".

This time I had the foresight to get a sitter for the girls and went on out there with Rafe.  The conversations with the wives were profoundly moving in many ways, and both enlightening and comforting in others.  These men and their wives paved the way for most of what we know now about the effects of PTSD on the veterans and their families.  They went to work every day knowing that someone they knew was going to die that day or they would be asked to do something they would hate. 

 We have programs in place today to help us because of the injustice and abuse they and their families suffered at that time.  They came back from war at a time when they were hated and spit on.  The spouses didn't understand what the men were going through and had no tools to help them heal.  The men didn't know what was happening to them and refused to believe it.

I listened as some spouses talked about how certain times of the year are harder than others and they matter of factly went down a list of battles trying to remember which one had occurred in that month.  Even better was hearing parts of our own current story as a family be told by these women as they recounted their own stories.  It felt familiar and strangely comforting.

One of the men told me that 20-30 years ago a woman who had written a book about PTSD was booed and treated terribly at a reunion in DC by the vets because she had told them they all had PTSD and they thought she was crazy.  He told me that he wished they had listened to her at the time and it took him over 20 years to get help.  His goal was to speak to as many young Marines as he could and tell them to get help as soon as possible, because "it never gets any better, it never goes away" if you don't.  He is, and they all are, still dealing with it all these years later, trying to change emotional and mental processes set in place a lifetime ago.

We have programs in place today because of the incredible hurt suffered by the veterans of this era.  I heard a story that I knew but had forgotten of how spouses and children had to move OFF base housing every time their husband deployed.  Can you imagine that?  Their trauma is why we stay on base now, with services to support us, counselors and therapists to talk to and activities for our children to help them understand the story of deployment.  We have our own briefs and communities and programs that enrich our lives.  They had none of that, but were simply kicked out.

Most of the time, Rafe and I weren't anywhere close to each other.  I was actually glad for this... we each were having conversations that we needed to have and to hear about deployments and reunions.  Continually throughout the day, someone would come up to me and tell me what a wonderful, honorable, moral, outstanding, etc. man/Marine my husband was.  It was actually quite thrilling to hear him be complimented so many times by these incredible people.

Later in the afternoon, I went and picked up the girls and brought them back to play at Elliot's Beach where they were all gathered.  Livi made a beeline for the Gullah memorial gospel dance line and inserted herself right in.  That group could eat!  They had a huge spread of food and finished it up after the dancing with a huge boil of crabs freshly caught by one of the attendees.  Amelia found friends to play with and they threw rocks off the point into the ocean as the sun started going down.  Again, I was thrilled to receive tons of compliments on my beautiful and well behaved girls; and yes, I am bragging.  Amelia even belted out a few OOOOORAH's to the delight of the retired Marines.

Again, I left with the girls to feed them dinner and put them to bed while Rafe went and met them for dinner and talked with them for another four hours.  He spent about ten hours today talking and listening; mostly listening.
In some ways, the information today I heard was nothing new; nothing that any of us in this day and age haven't heard about the Vietnam era.  But it is vastly different reading it on paper vs hearing it come out of someone's mouth, watching their face as they tell their stories, or as they tell any story but that one.  It was visceral, immediate, emotional to me, and hugely important to listen and be a part of.  I was honored, so incredibly honored to even be in the same room as these guys who have lived this battle for over 40-50 years.

I hope someday I can meet them again.


Tried to publish some posts that were accidentally left in draft stage and it didn't post them on the original writing date (which I thought it would) but today.  If anyone knows how or if it can be changed, I'd love to hear the solution!

Mediterranean Fish Stew with Shrimp and Cod

1 tbsp olive oil
2 onions, peeled and medium diced
1 bulb garlic, peeled and rough sliced
1 cup celery, medium diced
1/8 tsp fennel or anise seed

4 tbsp tomato paste
2 cans diced tomato plus juice

dry sherry
shrimp stock (see recipe)  OR other seafood stock, including clam juice
1 very large pinch saffron threads
2 oranges, juiced
kosher salt

cod, diced
shrimp, peeled and deveined
parsley, chopped (opt)

chile garlic paste (optional)

Rafe is on his way home!

I just found out yesterday that he will be home sometime tomorrow or the next day.  SHOCKING!  I thought he wasn't coming home for a few weeks.  It's exciting and nerve-wracking all at the same time.

Part of the fun of homecoming (for me at least) are the activities leading up to the big day; and the anticipation building and building.  Amelia and I usually make chains for each day we have left to wait; the yard gets raked and weeded; the house starts getting the annual deep cleaning; the wife starts getting spruced up (after months of benign neglect on appearance) and the little projects get finished up and new projects put on hold in anticipation of time spent together as a family. 

This time we are going to miss all that.  Right now it's a mad scramble to get ready!!!!

Like most times in your life when you really need life to go smoothly so you can get stuff done, it hasn't.

 Livi has been sick for 3 weeks and it got much worse yesterday and today.  She went to the doctor today and turns out her ear is infected (thought it was a tooth coming in per the dentist telling us that she would pull her ears when the next teeth came up in a few weeks) and her lungs are full of gunk.  She had a breathing treatment in the office and will need breathing treatments every 3 hours for the next few days at least and possibly longer.   Not easy to do as she fights the mask so hard.

The girls wet my bed; Livi is pulling everything she can down off of tables and cabinets and toy chests; I had to finish delivering some things donated to a local family in need; spring break and Amelia is home; it's been raining constantly; and I'm in the middle of pulling things out to sell for two garage sales, children's consignment fair, and regular consignment.

He'll be lucky if I shave my legs this time.  Welcome home, honey!

Friday, September 23, 2011

Tomato, Feta and Chickpea Salad

I made a modified version of this salad for dinner tonight.  I don't know about Martha's version, but mine came out fabulous and Rafe and I loved it.  Amelia not so much and Livi chewed all the flavor out of it and spit it back out.  Hard to describe how she does that, but imagine chewing meat until all the flavor is gone and then not swallowing it.  Yuck.

Here's my version:
  • No green beans.
  • Use sea salt
  • Zest 1 whole lemon instead of cutting 3 wide strips into matchsticks (can you say GIANT waste of time to do it the original way?!?!)
  • I got 3 tbsp of lemon juice from .5 of a lemon
  • 4 tbsp red onion (I hate it when a recipe says use a small onion - I'm never sure so I measured this one)
  • 3 oz feta just because
  • no parsley
  • fresh basil (approximately 1 tbsp chopped fine)
I made it about 4 hours ahead of time and it tasted MUCH better after it sat.  We served it with some roasted chicken breast seasoned with onion, garlic, poultry seasoning, salt and pepper.  Delish!

Here is the actual recipe, with my changes:
1 lemon, zested
3 tbsp lemon juice
2 tbsp extra virgin olive oil
1 pt cherry tomatoes, halved
4 tbsp minced red onion
1 can (15.5 oz) chickpeas, drained and rinsed
3 oz feta cheese, crumbled 
1 tbsp chopped fresh basil (don't even bother using dried.  If you don't have fresh, skip this recipe and make another time)

Mix.  Let sit a few hours.  Eat.

Edited to add - I ate this for breakfast today and the leftovers were so tasty 2 days later.  The flavors really bloomed.  The tomatoes looked a bit sad but they tasted fine.

Thursday, September 22, 2011

Livi's Speech

Olivia has been diagnosed with Speech Apraxia, and while I still don't completely understand all the nuances of it yet or how it will affect her long term, the short of it is that she can understand language better than she can speak it.  She will often look at you quite intently and seriously while you are speaking, watching your mouth move and sometimes silently moving her lips.

It's interesting watching the process of language develop in such slow motion.  Everything about Olivia develops in slow motion and it's quite fascinating in some ways to see how intricately we are made and how each step of our development prepares us for the next task along the way.  She's recently begun saying sentences that have meaning only to her at this point.  They are short and to the point and often sound very specific but we can't decipher them.  She loves to sing and will sing anytime she hears anyone else doing it.  She can actually sing more easily than she can speak, and her ST says that is typical of apraxia (similar to stutterers).  Still no words to the songs, but she can mimic rhythms pretty well (for her, that is).

Recently her ST handed me a piece of paper with all the words Olivia has said up to this point.  There are quite a few more than I thought would be on there; I think 37 words or gestures is what Janet (her ST) told me.  It was both refreshing and sad to see the paper... more words than I thought, but so many of them said only once or twice.  I haven't heard a clear "mama" since last November.

Our next goal is for her to say 2 and 3 words together.  Since I've been given the piece of paper to tape up and write on, I've found myself listening closer to her babble, as has Rafe and Amelia.   It's only been 1 day, literally, and we've written down 3 things.  This morning she went to wake up Amelia right after Rafe did, and she made a kissing sound and said "a(k)e uh"  (wake up) as she touched Mia.  At the store today she grabbed a plantain and said, "Ooo! Uh(k) aa aaa(d)"  (look at that).  Those are things we count as speech, surprisingly enough.  Janet keeps reminding us that speech is communication and although we can't recognize it, she is speaking and forming sentences.  Her favorite thing to say is "If you think you heard it in context, you did!"


I think Amelia is a bit ambivalent about Kindergarten.  She was so excited this summer to FINALLY be a kindergartner and begin teaching the younger children and doing the kindergarten work.  But now that she's finally arrived, she's having mixed feelings.

The first week she told me Ms. Avril, her beloved teacher since she was 3, made her cry.  This is curious, since Ms. Avril is one of the most peaceful and loving human beings you will ever meet.  As it turns out, Ms. Avril did make her cry --- she told Amelia she had to do some K work and could no longer choose just the "little kid" work as Mia calls it.  It was too much for her to take, leaving the comfort of the familiar.  It was good that she got that little push and she soon began enjoying giving lessons and doing new work with the math.

Today I happened to check the work of a little friend of hers in another class and there were tons of math papers in it.  I asked Amelia if she chose a lot of math work this week.  She immediately said, "Oh sure.  I did.".

Then a pause.  "Well, just a little."

Another pause.  "Perhaps I didn't choose any math work this week"

I love the way she uses Perhaps.  It comes out a lot when she's talking to us and never fails to make us smile.  I'm pretty sure she got it from Ms Avril, who is South African and speaks in a clipped, warm British (to my ears, but actually South African) accent.

Then she showed us the globe she had made instead - push pinning all the continents into shapes, gluing them in the right  place, labeling them (is that really her handwriting so neat already?), stuffing the globe and then finally sewing it after it was laminated so it could be hung.

Perhaps no math, but lots of Kindergarten :)

For My Brother(s)!!

Hi Paul!  Hi Todd!

I'm not sure Todd actually reads this but wanted to give him a shout out too :)

I love you guys!  I especially love listening to the two of you talk and tell stories at the same time, half laughing, half being serious.  It reminds me of growing up, going to Uncle Mike's and listening to all the relatives sit around talking and telling stories about their lives.

Friday, September 2, 2011

Amelia says a million amazing things every day and I always forget them come night time.  I've rarely written them down, much to my dismay. 

Tonight she said something really funny.  She was playing with a bouncy ball Asa had won for her out of a toy machine years ago in the bathtub and then after a while, lay on her back and floated in the water.  Out of the blue a few minutes later, she said "This ball loves me!".  I thought for sure I didn't hear her correctly, so I asked her how she could tell the ball loved her.  Her answer?

"Because it keeps trying to get next to me".... it was floating in the water next to her and bumping into her.   How funny the way her brain works.

Friday, August 26, 2011

For my sister...


My sister recently informed me that she checks my blog  even though I haven't written anything since Rafe came home from deployment.  It's been an extremely busy few months, both with Olivia and re-integrating as a family.  So here's me, dipping my toes back into the water of blogging again and saying hi to family and friends!

To anyone else who is reading this, actually everyone... I am asking for prayers for complete healing for  my brother Paul as he recovers from surgery to remove cancer!

Thursday, April 21, 2011

Husband came home 3 weeks early!!

And that was 2 weeks ago!!  So I have been very slow on updating posts lately.  We should be back to normal around here (or at least our new normal with Daddy home) in another week or two. 

Monday, April 18, 2011

Amelia says...

Some of the things that come out of her 4 year old mouth blow me away.  What mom doesn't love to listen to her kids speak and get an insight into their minds?  It's fascinating to me.  I wish I had a little magic tape recorder to carry around that I could download all pertinent conversation at the end of the day and save it forever.  I'm terrible at remembering to write it down, usually.

She's been noting things on the road and telling us what a "clever idea" that was lately.  Today she noticed a girl riding her bike on the sidewalk instead of the road and said, "Wasn't that a clever idea for her to do that, Mommy?"  I think she thought this was clever after we followed behind a cyclist on the busy road yesterday and she was very worried for his safety.

They are doing some construction work on Parris Island and have blocked off some roads partially to work for safety.  She also thinks that's "very clever of them, Mommy".

Today we're getting ready for an Easter Egg hunt at church and she wanted to pick out some "sparkly shoes that were click clacky."  She said it sounded like her shoes were happy and singing when she walked in them.  After she put them on and walked around, she was delighted - "OH MOMMY!  They DO click clack!!!  I knew it!" 

Breakfast Eggs

I had a Japanese sweet potato hanging out on the counter that I bought on a whim the other day.  This morning, I was trying to think of what to make Rafe for breakfast (we were out of almost everything) and thought to throw together some things I had laying around. 

I roasted the sweet potato, cut it in slices and layed it randomly in a teflon omelette pan (super heated with oil and a touch of browned butter).  In between the slices, I sprinkled chunks of cooked chorizo sausage and topped that with some caramelized onions leftover from last night's dinner and seasoned with kosher salt and garlic pepper.

  I put the whole pan in the oven for a few minutes till the onions were hot, then sprinkled it with a chiffonade of fresh spinach.  I heated the spinach up in the oven for another minute, then poured 2 cracked eggs over the top and back in the oven it went!  Once the whites were set, I took it out and slid the whole thing onto a plate. 

The eggs are amazing, by the way.  We buy them from a local military family who raises their own chickens naturally.  They deliver to our door for $3 per dozen.  The eggs are extra large and the calcium in these eggs is so high the shells are actually hard to crack!  Much thicker than normal eggs.  The yolks are brilliant orange. 

Anyway, it came out as one of the most delicious tasting breakfast we've had in a while.  The sweetness of the caramelized onion and potato mixed with the spicy chorizo and spinach were great.  It was almost too sweet - I might like to try this again with just regular sauteed onions and not caramelized, even though I never add sugar to the caramelized onions anyway - it's just naturally sweet.  I think the balance of flavors would be slightly better. 

Monday, March 28, 2011

Gadget Overload

I've taken Amelia to the park out in town recently several times and I'm always saddened by something I see.  Invariably there is at least one or two parents, more if it's a busy day, chatting away... on their gadgets.  Looking down, texting like crazy, half hearing their kids and only glancing up occasionally to check on them.

 It doesn't seem so bad when the kids have a few other kids to play with, but when it's obviously only one child with his or her parent it really breaks my heart.  I watch the kids try to get their parent's attention - "watch me, daddy/mommy, watch me!", "play with me",  "swing me" - over and over again only to see the parent not really look up. 

Do they really think their kids can't tell they aren't giving them their full attention?  Do they expect their children to grow up to be teenagers and adults and act completely differently than the behavior they see modeled right now?  It's like you are sitting there telling your kids, "You aren't really that important to me, and definitely not as important as the other people I am talking to right now"

I do know that it might be the a conversation with other kids/spouse/doctor that is important.  But there aren't that many urgent conversations that would make that many people sit there and text away for almost an hour at a time (at least) to all their FB and online buddies.  When your gadgets become more important than your kids, you have a problem. 

It's lead me to think of something else - the computer behavior I model in the house.  I take breaks to check email from Rafe, Olivia's doctors, other info needed throughout the day.  I need to make sure that I am on there for a real reason and keep it as short as possible when we are having our free time together.  That's not to say that when she is playing independently or we are having alone or personal time that I shouldn't be on there; but how do I want to model the attentiveness I want her to pay to my interactions with her?  Her time after school with us is limited before she goes to bed, and I want to make sure that our time with each other is meaningful family time, and not all of us in seperate corners hooked up to our gadgets vegging out. 

Something I read today reminds me to limit computer time for my kids as they grow older. The implication that their social and emotional development will be guided by internet media isn't a comfortable one.
Facebook can lead to depression in adolescents
The researchers say a "large part of this generation's social and emotional development is occurring while on the Internet and on cell phones."

Indignant Amelia

Amelia just came stomping into the livingroom with a fierce look on her face, hollering "Momma!  Stop putting your big things on my craft table!  That's how I can't find things when I want to, ok?  :::heavy sigh:::" 

As Mom and I are cracking up, she got even more upset - "This isn't funny!"  Which made us laugh all the harder and eventually she started laughing too, before remembering she was mad and scowling at us again and stomping off. 

My big thing on her craft table?  It was a giant stock colander (like a restaurant uses) that I put there to finish drying before putting away.

Wednesday, March 23, 2011

Scenes from a life

Princess Biker Fairy

 Earning money for her bike by cleaning the stroller

My girls tinkling the ivories

 MUSC campus in Charleston - going for a dental appointment with Olivia. 
The city is blooming and beautiful.

 Sauteeing oxtails for a braise

Some of the ingredients going into the braise... the gelatinous stock is actually leftover pan juices from a roast, chilled overnight and defatted.  Easy stock.

Amelia's rendition of a "happy toaster with legs" - drawn for a dear family friend

Saying goodbye to good friends

Looking for a way up into the high chair

Playing dress up with friends

Temperature Dysregulation

One of Olivia's many issues is Temperature Dysregulation.  She might grow out of it, but probably not.

Patients often have some dysregulation of temperature, in which the baseline body temperature often measures in the 96s and 97s and sometimes lower; temperatures can drop even lower during the night. Less often, temperature values at baseline run higher than normal. This is a particularly important piece of information when assessing a mitochondrial patient who is sick with infectious symptoms. An apparent "low-grade" temperature of 100°F may be dismissed by an unknowing pediatric practice as being insignificant. However, if the patient's baseline temperature runs at 96°, such an impression may represent a mistaken conclusion.  Autonomic dysregulation article here
What this means in practical terms is that yesterday her temperature ranged from 77 degrees (her feet) to 101 degrees (under her arms)...all at the same time. 

Her base temperature used to be around 96, but I've stopped checking it the last six months and no longer know what it is.  She seemed to be doing a better job regulating her temperature. 

But this past week has been doing a number on her.. she doesn't do well when her routine of sleeping and eating are disturbed; and we've been outside a lot in the growing heat.  We sleep with the house at 66 degrees at night and keep it around 70-72 in the day.  It is far easier to keep her warm than it is to keep her cool.  At night, she doesn't really move once she goes to sleep, so that heat accumulates under her body and around her and she gets really hot.  After waking up from her nap yesterday, we took temperatures because she seemed so hot on her tummy and back and they were all over the board. 

So now it's time to start packing ice packs/wet cloths/coolers everywhere we go as the weather gets warmer.  We're going to the zoo next week and it's going to be tricky to keep her cool.

Monday, March 21, 2011

Olivia's Blue Eyes

There are no seven wonders of the world in the eyes of a child. 
There are seven million. 
~Walt Streightiff
This is a straight out of the camera shot of Olivia - I was trying to take a picture of Olivia's face to document an allergic reaction to something.  I don't know why this is the first time I've seen her eyes so clearly - I had no idea they were so beautiful.

Saturday, March 19, 2011

Imagination Station

She's playing in the rain, right outside our kitchen window.  I tried to catch her singing to her "animals" (acorns), but only managed to get the tail end of it.

Sewing with Grandma

 Learning about selvages

 Taking a quick break to play in the rain

 Back inside, pinning the fabric

 She did a great job!  Very concentrated in thought.

Starting and stopping the machine while Grandma is sewing; later she was doing some of the sewing.

At the local beautician's...

She even fixed her own hair - but why she decided to put a cotton face pad
under her hair band is anyone's guess.

Cooking with Momma

 We're making Beef with Broccoli and she's stripping the leaves off the broccoli. 
Hard at work

Instinct for the Beautiful

Rachel Carson
"A child’s world is fresh and new and beautiful, full of wonder and excitement. It is our misfortune that for most of us that clear-eyed vision, that true instinct for what is beautiful, is dimmed and even lost  before we reach adulthood."

Amelia loves being outside and collecting her "treasures".  Every day she brings me something she collects because it's pretty or it smells good; many times her treasures are carried all day long in her pockets waiting for the moment she can share them with me.  "I got this just for you, Momma!  Smell how good it smells! I knew you would like it."  She finds beauty everywhere.  This is her little table full of things she loved this day - a stick of cedar, a few blooming purple flowers (weeds) and a candle that smells like fresh air and ocean.

On this day, she dragged  home (and made me knock one extra out of a tree) some fallen palm branches to make this little house.  Later she took the branches down and made a secret entrance to the stairs with them by placing them between the posts on top of the railing.  To get in the house you have to crawl under them.

CDC Success!

This morning was a bit hectic loading all of Olivia's stuff into the van (including the high chair); but well worth it in the long run.  The nurse was there when I showed up and took Olivia directly from me while I was bringing in everything.  I noticed she took her and played with her a bit, showed her a fish tank, and sat with her in the room to play with Olivia on her lap.  As nice as it was, I am assuming she did it to get a feel for what Olivia's capabilities are.  I later found out she stayed a couple of hours at the center and was there when Olivia's meds were drawn so there would be oversight. 

Susan (our cognitive therapist from EDIS) was there after lunch and checked in on Olivia and the classroom to make sure things were running smoothly.  She later called me with an update and report on how things went.

I went to go pick her up and the staff all told me how much they loved having her and what a great baby she was and to bring her back anytime... I think they were vastly relieved to find out how normal she is.  The caregivers in the room told me they hadn't expected her to be so mobile and to be able to sit up.  Not sure why they felt that way; I told them she could sit up but could not sit alone on a chair- she would fall over.  It's not that she doesn't have the muscle strength to sit on the chair - it's that she doesn't understand how to sit on a chair.  She can't keep her balance because she's not sure where her body is at in space on a chair yet.

The greatest thing about the CDC today was the caregivers telling me she was repeating sounds they made and babbling a lot; and she waved "bye bye" on her own to a woman she didn't know who was leaving the room.  SHOCKING.  I am so impressed!  I talked it over with Susan and mentioned that I thought it would be a good idea to bring her there once a week for socialization and she agreed with me.  The only negative was that she didn't sleep at all.  They could not get her to lie down.

Oddly enough, when I brought her home and put her down for a nap, she only took about 1.5 hour nap.  She woke up ok, but really reacted poorly to situations in the house.  She actually got a frown on her face and cried, a real fussy cry, for about 15-20 seconds several times when she was with mom for no apparent reason.  It honestly startled the heck out of both of us, and we started checking her whole body over to figure out what was wrong.  She turned out to have an enlarged node on the back of her neck/head area.  We called the doctor and were told it was a "shoddy lymph node" and to just watch it.  I'm not even sure what that is at this point. 

All in all, a busy day.  I took Amelia to a going away luncheon with bouncy house for the woman who coordinates playdates in the neighborhood; then drove her over to Creative Stitches to finish sewing her shorts with Grandma.  After they came home we went to an Oyster Roast put on by the battalion at Elliot's Beach, complete with another bouncy house and bonfire. 

Friday, March 18, 2011

Mixed Reactions

Lately when I see videos like this, I have very mixed reactions.  The kids are cute and hilarious; but I always find myself a bit stunned at how animated and interactive they are.  Their faces are so expressive, their reaction time is so quick, and their noises are loud and specific.  It makes me sad for Olivia.

Wednesday, March 16, 2011


We had our first SNERT yesterday for Olivia. 

The Marine Corps Special Needs Evaluation Review Team (SNERT) consists of qualified personnel whose goal is to make an assessment of the accommodations necessary for a special needs child to participate in Marine Corps Children, Youth and Teen Programs (CYTP) and to determine the most appropriate placement for the child. An installation’s SNERT reports to the installation commander and includes, at a minimum, the CYTP Administrator, EFMP Coordinator, medical personnel, parent(s), the child or youth when appropriate, and other applicable CYTP or community agency personnel. 
Children who require medical or educational intervention, assistance, or other accommodations are eligible for services.  This includes, but is not limited to, children with autism, asthma, allergies, hearing impairment, orthopedic impairment, developmental delays, behavioral issues, specific learning disablement, and mental, physical, or emotional challenges. Upon request for services, the SNERT will make an assessment of the accommodations necessary for a special needs child to participate and determine the most appropriate placement.  
Parents can read Marine Corps Order P1710.30E, "Marine Corps Children, Youth and Teen Programs," 24 June 2004 for more information on SNERT.

Currently with my husband deployed, my mom is my respite care provider.  She's received permission from his CO and housing to live on base with me and it has been invaluable for Olivia's care and therapy.  I think she is MUCH farther ahead than she would be otherwise because of the level of care and therapy she is receiving from both of us on a daily basis.

I want to take her out to thank her, and give us both a day of fun filled relaxation with no kids.  But.. SHE is my respite care provider.  So I looked into putting Olivia in the CDC (Child Development Center) on base for drop in care and found that I needed to do a SNERT to enroll her. 

It was a little surreal - kind of like an IEP meeting for preschoolers.  The director of the CDC was there; a representative from the EFMP office (Exceptional Family Member Program); and a nurse.  I was told that a representative from EDIS (Educational Developmental Intervention Services) would also be there, but I think she was unavailable on such short notice. 

The director interviewed me and asked me about Olivia's medical history and potential issues.  It was hard to explain what was wrong with Olivia, because while I was stating the facts, she actually does better day to day right now than it sounded.  It was sort of the feeling you get as a special needs parent when you think your child is doing great and your life has settled into "normal" right up until you go to the doctor's office and they make you fill out the questionnaire on developmental milestones - and you realize how far behind she really is.  The director sounded really anxious and nervous, and every time I told her something it seemed she worried more and more.  The CDC's have only recently begun accepting federal money for their food programs and so they have to abide by the disability inclusion laws for education.  Prior to that, they did not. 

The nurse kept trying to talk me into having Olivia taken care of at a local family provider home on base - basically a home child care business run by a mom.  There are quite a few providers on both bases available for this option. 

The EFMP director is AMAZING and she actually has seen Olivia in action.  She was there basically to observe and facilitate as needed for my rights.  She kept quiet most of the time, just listening as we went back and forth between the director and the nurse and myself.  I had to keep saying things like, "Ok, let me wrap my mind around this and make sure I understand you - You are telling me that you are uncomfortable with your ability to supply her needs and take care of her at the CDC and you want me to take her to a Family Home Provider instead" (which is illegal).  The nurse would come back with, "Well, I just think you would be happier if you took her to a Family Home Provider who could provide a more individualized level of care because there are less children in the home".   It was all very tricky and subtle how they worded things. 

I really wanted her in the CDC for several reasons, not the least of which was socialization with other children her age.  We've had to keep her seperated for so long because of health issues, I really think she needs to be around a lot of other little kids close to her age. Finally the EFMP rep stepped in and said one sentence and they sort of all fell in line and agreed to have her come to the CDC.  They want me to put her in care this Friday for a trial run while I am still close by in case anything happens they have questions about.  It's all so strange to me - they called me 3 times after I left the meeting to ask questions about her development level and kind of sounding panicky every time I gave an answer. 

Here are some of the issues they had:
Can she sit in a chair (the other kids sit in chairs and self feed)?
Can she drink from a sippy cup?
Can she have the lunch they provide?
Can she eat solids?
Can she follow their schedule?
Can she sit up?
Can she feed herself?

They really didn't give me the impression they were too thrilled with having to do the extra work it would take to have Olivia there - feed her by bottle, feed her by spoon, put her in a high chair, etc.  They actually asked me to bring my own high chair.  I am providing the food, the spoon, the milk in a thermos already mixed in bottles, the bib for her.... It sounds like this huge deal and really it's no different from having to watch an 11-12 month old.

Monday, March 7, 2011

It's official - I'm twice as stressed as everyone else...

Did you know that mothers of children with Prader-Willi Syndrome have up to twice as much stress when compared with parents of other developmentally disabled children?  In addition, parents with disabled children already report a 10% higher number of stressors then the average parent.  Not to mention a recent American Psychological Association poll that found that one-third (32%) of parents in general report that their stress levels are extreme!

This is from the Foundation for Prader Willi Research - Canada.

I heard that statistic very early on after Olivia was diagnosed with PWS.  At the time, I found it very hard to believe that a PWS parent could be more stressed than any other parent of a disabled child.  It smacked of hubris to me and I thought that either the person quoting it misheard the original information, left out a word, or just "felt" things were worse. 

I don't believe that anymore.  Although it feels kind of wrong for me to admit this - I've never been a big fan of the whole game of "my stress is worse than your stress" or "my problem is worse than your problem" or worst of all, "my husband's deployment is worse on me than your husband's deployment is on you"; I can understand a little bit of why PWS feels a little worse.  While it is not true in all cases, there are some things unique to PWS that are not encountered in any other disability that I am currently aware of. 

It's the food.  Always the food.

If you think we're a food obsessed culture now, wait until you have a food related disorder and then you will realize you can barely go even a few minutes without thinking, hearing, seeing, smelling food in some way.  Everyone is talking about food -  using food for motivation or discipline; as metaphor for hospitality, love or caring; as a tool for health or fitness; for familial or community bonding; for tradition or cultural reference; for hobby and relaxation; for business deals and entertainment; as a story-telling tool in parables and books... the list goes on. 

In our family, even before Olivia, we really limited the amount of sweets and snacks we have in the house.  I don't really buy junk food; and by this I mean cookies, chips, candy, snack crackers, cake or sweet bread mixes, etc.  It's not that we never ate those things, but they were eaten sparingly and rarely, and mostly at other people's houses.  About two years ago I started collecting all the candy that Amelia was being given at various functions and put it in a clear plastic shoebox.  Every time she received treats, she could eat one or two and the rest went into the shoebox for special occasions.  I've periodically dumped out a bunch of it in the trash and yet the box has never gone empty. 

Even though Olivia doesn't have the extreme hunger YET, I find myself constantly confronted with situations now that I find stressful because I am so much more aware of food that I never noticed before.  Today at church really brought this home to me.
We go to church and there are candy dishes everywhere, filled with peppermints.  I can't get into church without fear that my 4 year old will have a screaming fit because she sees candy and wants a piece of it.  I want to tell her no, but I created a bad habit/expectation by letting her have one piece of candy when she comes in the door so I can speak in peace to the people around me.  If it was never there at all, I would have NO problem with her whatsoever, I could still speak in peace.  It's the temptation that causes a problem for my four year old. 

Then once in church, there are donuts at the back.  They are such a treat because we never buy them, and I allow her to have one donut before we sing for praise and worship time.  She constantly asks if she can have one more but always accepts the answer is no. 

I take her to her Sunday School class, and the first class that is her age rewards the kids with a small amount of goldfish.  I don't like it, but at least it's not sugar. 

I started going earlier, and last Sunday was shocked when I went to pick her up from her new class when I found out she had a paper bag full of candy and other goodies she "earned" by answering questions.  A sack.  Maybe it was 6 things, but when you need a sack to carry the sugar, I think it's too much.  The teacher told me it was a special class and that wasn't normal.  I didn't know ahead of time that is how things worked and it never occurred to me to ask.  I forgot between last sunday and this sunday and she went again to the early class.  When it was over, she came running out with more candy for answering questions correctly.  Only two pieces this time, but .... then the inevitable questions.  Can I have it?  Now?  If not now, then when? 

It's so frustrating because we're only trying to keep her a bit healthier and away from the national average of  122 pounds of sugar eaten yearly per person.

"As little as 100 years ago, it is estimated that Americans ate around one pound of sugar a year." (Dr. Scott Olsen)  Teens eat even more sugar than adults, and we want to establish healthy habits for her very early on. 

It will be easier to stick to what is healthy than to retrain her as an adult to not eat unhealthy foods... think of your own diets and food downfalls.

So all that is only the background for what comes next. 

It's everywhere.  EVERY. WHERE.  So pretend that you have a crack cocaine addict that is attached to you with handcuffs.  You can not go anywhere without this addict by your side.  It is your job to make sure that the cocaine addict behave him or herself at all times; use proper manners; use appropriate language and social skills; have appropriate hygiene; be pleasant and fun to be around. 

Everywhere you go, someone offers you some cocaine.  You don't have the same problems with it, so you just say no.  It's left on the counter in front of you in case you change your mind.  You open a book to read a story to your companion and there are pictures of cocaine everywhere, stories with long descriptions of how wonderful cocaine is as part of the storyline or even background plot.  Listen to the radio and you will hear whole programs on cocaine.... you get the idea.  All the while your companion is expected to not indulge, to control him or herself, to behave like a normal human being with no problems. 

Only it doesn't  happen.

How do you operate as a normal family around the dinner table, laughing and talking and preparing dinner together when you have to watch like a hawk what your PWS child is doing in the kitchen?  It takes a joyful, everyday event and creates a tension and stress filled one.  Even if you have a system in place, I would imagine how guilty I would feel knowing I won't be able to feed Olivia as much as she wants to eat.  It has the potential to create eating disorders in other family members that would never have existed otherwise because of the ritual/cautions needed around food of all kinds and the tensions that result from that.

How do you go for family vacations with your extended family?  How do you stay at houses that don't have food locked up?  Will I ever be able to visit my brothers or my sisters or my parents at their house again without stress of where she is at every minute?  How do I go grocery shopping when I have to take her with me?

Most of all, how do I balance my love of cooking with my oldest daughter (4 year old Amelia) and all that we will cook together in the future in shared companionship - creating an intimacy in that area that Olivia and I will never know together - without making Olivia feel left out and left behind?

Not only do you have to control their eating habits and calories, you have to control your own and that of your family.   You can't indulge in an ice cream sunday for dessert for the whole family when your child can only have 700 calories total for the day.  In order for your child not to feel left out or a burden or unfairly penalized, everyone eats the same thing; only you have a few more calories on your plate.  The food becomes much healthier but you will leave behind a lot of old family favorites and traditions.  You can't just swing into a restaurant or fast food place when  you are running late because the caloric content is too much for your child.

In the end, I think the intense stress comes from a variable that shows up in so many unexpected places, in so many unexpected ways, and yet is essential for both physical and social life.

I don't think I explained this very well as I read over this but I'm tired and done for tonight.  And I am so tired of seeing junk food and candy EVERYWHERE.  And a whole other rant.. why do we reward kids with food anyway??? ... saved for another time.

***EDITED TO ADD:  I've had so many comments, both public and private, on this asking to link to this page. You are welcome to link to it; thank you so much.  Please let me know where you link; I love to read other's blogs.  It helps to know it's not just me that feels this way. 

Friday, March 4, 2011

Listen for it!!

Every day my oldest says something cute and every day I forget what it was when it comes time to write it down.  Not this time, my friends!!  She had me and mom doubled over in laughter.

And yes, of course, it's potty humor.  So if you are like the pre-mom me and don't get the funny-ness of this, skip ahead to the next post. 

We're both talking as she runs into the bathroom and sits down.  All of a sudden she says, 'Shhhhhh, Momma!  BE QUIET" in a stage whisper.  I ask her why, and she says very dramatically, "So you can hear the PLOP", still in a very loud whisper.  I thought I heard something and wanted to get the heck out of there, so I said, "Oh, I hear it!" and started to head out the door.  She replies with disgust - "Noooo! That's just a bubble in my bottom!"

Wednesday, March 2, 2011

Everything Becomes a Therapy Tool

Olivia stood for 2 seconds yesterday and for 6 seconds today, barefooted.  She's 18 months old. 

She's fascinated by the open dishwasher.  When I'm loading it, I have to be very careful of where she's at - she'll hear it and crawl to it as fast as her legs can carry her.  Yesterday I had a blast watching her have fun pulling the clean dishes out of the bottom rack - they were simple plastic things like strainers, measuring cups, etc.  and laughing.

I know I should have stopped her, but I kept thinking, "THIS is GREAT therapy!!!"  She would pull herself to stand, reach inside and grab something with one hand, while barely holding on with the other.  She was shifting her weight from side to side and balancing her core.  The bottom rack would slide in as she leaned forward, so she had to figure out how to simultaneously pull it out, hold her balance and grab.  She reached for a whisk she really wanted and stood for two seconds putting both hands on the whisk before plopping down.  Today she grabbed the same whisk again and managed to balance herself while holding it for six seconds. 

Yes, I stood there and counted and waited for her to fall. 

It's amazing the development I took for granted in Amelia comes in so many tiny steps when you see it in slow motion, as I do with Olivia.

Saturday, February 26, 2011

Love my girl's imagination...

Amelia is wearing an apron she put on earlier in the day to clean with.  She was scrubbing down her police car outside (note the Kearney Jr. Police badge she is wearing up by her neck). She took a break to play house with her roly poly guys - they are all looking for the treasure in the clouds (a blue ring in cottonballs), which is right outside their house that looks suspiciously like an old diaper box.

She's got quite the style.  Note the zebra hat and the feather boa on her baby.  No sensible shoes for this girl!

Scenes From a Low Country Oyster Roast

This entire ALL you can eat oyster roast was only FIFTEEN DOLLARS.

Amelia, loving her oysters.  She will only eat "the little, cute ones", according to her. 

You're making Momma proud!!

Oysters roasting on a metal rack, covered in a wet cloth

Shoveling the oysters into buckets to dump on the tables
Frying turkeys

Grilling hotdogs and pulled pork

Roasting marshmallows for s'mores

Digging in at the oyster table

Sacks full of oysters and wood on a trailer

Bring your own gloves and oyster knife;
 table is full of hot sauce, paper towels and cocktail sauce
The emptied oysters get dumped in buckets, and the buckets dumped in wheelbarrows. 
They are then recycled back into the water to grow more oyster beds.

All you can eat oysters; still more sacks waiting to roast

Sitting by the fire, pulling pork; oysters roasting under the cloth
Everyone is eating plump oysters, chili, hotdogs, chicken mop, fried turkey, pulled pork,
brownies, chocolate nut cookies, crackers, drinks, and s'mores.  Mom and Olivia are right in front.

The end of the night; sitting around warming up by the fire. 
It's around 60 degrees by this time.

Friday, February 25, 2011

First moments with new SMO's

Olivia has never worn shoes and she's almost 18 months old.  She doesn't walk so I didn't really see a need to buy expensive shoes she would just grow out of quickly.  But this week we did get some special supports for her feet to help stabilize them and her ankles so that she could learn to walk.  Here she is with our Occupational Therapist right after we put them on her.

Kissing the Birdie

Working with the cognitive therapist taking birdies out and putting them back in

Thursday, February 24, 2011

My New Administrative Assistant

She's at it again... helping me sort my mail!

Sunny Day at the Park

Amelia loves her hats.  She's become quite the little model when the camera comes out.  I don't even know how she knows to make these cute gestures, but this was the first I'd seen them.  It was 74 degrees out yesterday and a lovely day!

Wednesday, February 23, 2011

Favorite Therapy Tools for the first year of PWS

When Olivia first came home from the hospital, she could not move purposefully.  We had tons of physical, occupational, cognitive and speech therapy for her.  All the therapists would give us a different area to work on during the week - homework so to speak.  Our cognitive therapist gave us this book so I could find a way to sing and play with her.  It was a great book - shows the actions to take with the words and lots of childhood rhymes.  One of the best things about it was that my brain was overloaded with all the information I was learning about PWS, and my physical time was taken up with taking care of her.  I had very little mental or emotional energy left over just to play, and I definitely had zero creativity.  This book was great for that. 

She also gave us the bird.  It's a very old fashioned toy, and if you ever see it, snatch it up.  It has a deep toned, very pleasant sounding bell inside that dings when the bird is moved in any direction.  It's extremely easy to move.  In order to encourage Olivia to move, I used to place it between her thighs as close to her crotch as I could as she laid on her back.  Again, this was in the not moving much at all stage. She couldn't lift her head nor did she have the strength to hold on to even the simplest of toys, literally.  Her legs were the strongest part of her and they would occasionally move, or she might squirm with the slightest of movements.  So anytime any part of her moved, this bird would chime.  It was an immediate feedback for the tiniest of movement on her part.  She loved this bird, and it would come into play during therapy in all different ways during the past year. 

The other toy with the multiple birds is extremely easy to move.  With the slightest touch, the birds twirl and the toy rolls.  Again, this provided excellent feedback to any of her movements and encouraged her to move when she would accidentally touch it. 

The last toy that is her favorite is not pictured here.  It was examining room table paper - the paper from the table at the doctor's office.  I noticed that every time we took her there (weekly for the first two months), it seemed to be the only time she really moved was on that paper.  It's so noisy and crinkly, and again it provided loud, fun, immediate feedback to her movements.  So I asked them if they would give me some of that paper to take home and they gave me a small roll of it.  I would tear off sheets of it and lay her on it for tummy time or for back time and watch her try to move more to make noise. 

Time to move on, toys!!!  I donated them all to EDIS.  She's on to bigger and better things.