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.