Thursday, March 31, 2011

The Categories of Cleaning

{I don't know how many times I have typed "cateRgories"...if you ever see it that way here just know that I do know how to spell, my fingers just slip!}

I think I may have worked as a Professional Organizer in another life.  If not, and if I believed in reincarnation, I'd want to come back as one.  (However, the entire concept of reincarnation just makes me tired.  I mean, this life has been challenging enough, do I really want to come back for another go-round??  I think not.)

In the process of trying to 'teach' my older child how to go about cleaning her room (I know, I know - you shouldn't have to 'teach' a child 'how to clean'.  But this particular child is VERY LITERAL in the way she thinks and will probably grow up to be a lawyer or something because she like to argue every single point with me.  Not sure where she get this tendency, wink wink.), I realized there are actually two categories to cleaning: Nooks 'n' Crannies cleaning, and Soap 'n' Water cleaning.

1) Nooks'n'Crannies cleaning: this means systematically and regularly going through every single storage space, flat surface, drawer, closet in your living space.  Any space that is used to store stuff falls into this category - starting with your attic or crawl space, moving through any and all drawers, closets, shelves, down into any kitchen cabinets and pantries (you know you have expired cans of peas in there), bookshelves, DVD and/or CD storage, coffee-table shelves...and on into the basement if you have one.  Basically anywhere you can set something down and forget about it, qualifies as a "nook" or "cranny" and can also be described as "a flat surface not used on a daily basis where I can deposit piles of cr*p and forget about it".

Why go through all these little spaces?  Because my friend, if you don't, you are basically straightening up, storing, and cleaning around vast amounts of JUNK which, really, you haven't used/touched/thought about in a really long time.  If you don't regularly go through this stuff...well, pretty soon you're being featured on an episode of "H.oarders" and you're not even sure how it got to that point!  So, instead of ignoring all these spaces (hoping the junk grows legs and walks itself to the junk bin just really doesn't work), take one shelf or one area, and just go through the stuff.  Use the three categories we have all learned from watching shows like "H.oarders" - the "keep" pile, the "pitch" pile, and the "donate" pile.  Put the "pitch" stuff immediately into a garbage bag, and put it immediately into the trash.  Take the donate stuff and put it into its own bag, and put it immediately into your car....and the next time you drive by the Good.will drop-off, drop it off!!

2) Soap'n'Water cleaning:  This has to come second in the process because otherwise, you are having to move piles of stuff just to get to the surface you want to clean, right?  I mean, it is hard to wipe down the shelves in a closet if you open the closet door, and can't even see the shelves because they are covered with stuff you can't remember ever having bought or used, and really don't want.  No, you would open that closet door and look at all the stuff taking up your (perhaps only) spot to store things....and close the door again, right? 

I will be honest in saying that I have not been successful in doing this kind of cleaning throughout my entire house!  These cleaning suggestions came to mind as I pondered the contrasts between how I "clean" and how my husband cleans.  He has a tendency to straighten the clutter, and I don't think something is truly clean unless I've gone through the clutter and gotten rid of stuff, and then cleaned/dusted the surface.  His method definitely makes things "look" cleaner more quickly!

Thanks for reading!

Wednesday, March 30, 2011

Etsy Etsy Etsy

What is "Etsy"??  It is a website for crafters, where they set up their own online 'shops' and sell their beautiful handmade items!

I am hoping you will go visit my sister's shop, found at,

She creates the beautiful jewelry.  Looking at the earrings she makes is seriously tempting me to go get my ears pierced - again but for the first time, as the first two tries didn't work. 

My mother creates the beautiful tatted ornaments and jewelry.  Tatting is becoming a lost art!  These are beautiful mom is very talented.

Aannnnnd I contributed the Zentangle notecards.  I am working on more. 

Thanks for reading, and thanks for checking out the Etsy store!


Sunday, March 27, 2011

Depends on the listener

Talking about life with S, and about life with Prader-Willi Syndrome, is always influenced by the audience.

I guess this might be obvious, and no surprise.  But it is something that really crystallized in my brain just now, as a result of a F.acebook post I just read.  Another PWS mom posted a link to an article about a family whose youngest-of-four-children has Down's Syndrome. What surfaced most clearly for me, with this article, is the mom's emphasis on how life with her daughter-with-DS is  It is what it is, and since they have three other children, life is just whatever it is with a house full of children.  In other words, their daughter's DS diagnosis doesn't define the family's life, and while the mom does write about it sometimes on her blog, it doesn't direct the blog's content.  They live family life just like any other family.

So, given that the article ran in the family's area newspaper, and thus had the general public as it's audience, part of the message here seems to be that children with DS or any diagnosis are children just like any other children, and life with DS is just like "regular" family life.  Thus the ultimate, if subconscious, outcome of an article like this might be better overall acceptance of individuals with special needs...and for that, I am intensely grateful to this family and this mom, for putting themselves out there into the public eye.

I kind of wonder, if this mom were trying to raise funds for a DS non-profit, for research or quality-of-life projects, would her message have been different?  Because folks, let me tell you - regardless of how smoothly her family has adjusted to her daughter's diagnosis, I bet there are still aspects of DS with which she might wish her daughter didn't have to contend.  That's the challenge with education about syndromes which affect children - it is part consolation, part brutally honest education, and all of it is true.  Here in my house, because of PWS, our good times with S do happen - and those times are really, really good - and thank God for that because the bad times can be really, really hard.

Talking about Prader-Willi Syndrome, and S's life with it, and our adjustment to it as a family, is very much influenced by my audience.  Some examples:

Talking to a parent of one of S's classmates, about an upcoming holiday party: "I have to count S's calorie intake very carefully, so I'd appreciate it if the holiday party treats weren't 100% junkfood.  And, please don't offer her seconds."

Talking to the parent of one of S's classmates, about a potential playdate: "Yes, S can come over to play with your child....but, guess what, I have to come with her, for her safety.  Plus, here are a few pamphlets for you to read about PWS, before we come over."  (I'm not sure I would do the pamphlet thing - but I would have to go with S, and I would have to educate the parent, because American kids in general snack too much so I'm sure that would come up during most playdates.)

Talking to parents of younger children with PWS, sometimes newly diagnosed: "S has done 100% better than we ever expected.  Life here is calm, and the food aspect of PWS has been manageable."  This is a true statement, for us/S/our family.  I'm not going to lay out all the tough parts of PWS to parents who have just started down the PWS path - getting the diagnosis and learning about the syndrome is enough info for them at that point.

Talking to neighbors: "Yes, S can play for a bit....but please do NOT offer her any snacks.  Which means, that if your child starts jones-ing for a juicebox, please let me know and I'll take S home."

Talking to S's teachers: "The only thing that is keeping S from having a "negative food episode" is opportunity.  She is not to go ANYWHERE in the building unsupervised, and she must be supervised by an adult, not a classmate.  If she starts to have a meltdown please do not restrain her, as that only makes it worse."

Talking to any group which is totally unfamiliar with PWS: "Because of PWS my child feels constantly hungry.  No, it doesn't matter what or how often she eats.  Yes, because of this she potentially might eat until her stomach bursts.  Yes this has happened to individuals in the PWS community, with fatal outcomes.  No, appetite suppressants do not work, nor does any stomach-altering surgery.  Yes, your donations are extremely important, not only for research projects but also for quality-of-life efforts, like PWS-only activities where our kids don't have to worry about pervasive, anxiety-producing food opportunities or gaining 10 pounds in one weekend.  Yes, S is doing well but PWS still sucks.  No, there is no "cure"....yet."

And those are just some examples....I could think of many more.  To fellow families with younger children with PWS, I always want to emphasize the "livability" of PWS - because THAT'S TRUE.  You adjust, and it becomes your "normal" as a family.  It's do-able, and you will have lots and lots of regular moments with your family.  But to the general public?  No, this isn't "just like normal life", as most of society knows it. This is hard.  My daughter struggles, minute by minute, with what PWS does to her body.  She still has a right to, and deserves, acceptance and understanding from society as a whole; but that doesn't change her daily reality, or make it less worthy of funding for quality-of-life funding or research projects.

Thanks for reading!

Friday, March 25, 2011

Little Bit 'A Random

1.  I am thankful for Ibuprofen some point in the next few hours it will hopefully help my head stop pounding. [headache still lingers.]

2. I posted a question in BlogFrog the other day, seeing if there are any other bloggers out there from my state....thus far, only two people have responded!  I know BF doesn't cover every blogger out there...but, wow, only three of us??

3. It is back to being cold, here...funny how much colder 25 degrees feels, when I've had a taste of 50 degrees!

4. My older daughter, K, is downstairs right now playing her violin WITHOUT HAVING BEEN ASKED.  We got home from dinner, S and I took the dog for a walk, and came home to her playing away in her room (B stayed home w/her)!!!  She is not taking lessons at the she's just playing right now because she enjoys cool is that!

5. It is completely annoying to me when people are judged as "inferior" or "not worth one's time" on the basis of financial status/income, clothing, physical state, age, eating habits, willingness to conform....I've been judged along those lines, and it really stinks.

6. I like motorcycles, would love to have a ride on one at least once!  But, I'm not sure I would buy one for myself...I have images of being in a accident and sliding across gravel etc etc.  Plus they're kinda loud.

7. Found a random bit of chewed-up metal in the garbage disposal today...does that mean it is going to fall apart/explode in the next week or so??  Sigh.

8. I'm an avid F/armville player; there, I admitted it, I'm out in the open about my "habit".  A highlight of my week was that I was finally able to have my farmer travel to the English now I have two farms!  It's funny though, how polarizing FV can be...FB people either love it or really hate it.  I try my hardest to spare my non-playing friends from the multiple posts, though!

9. Are H.ershey Kiss wrappers recycle-able?  My husband keeps tossing them in the general vicinity of the recycling can, and it drives me crazy as they generally end up on the floor.  I'd love to know definitively whether they recycle or not!

10. Books I'm reading/listening to at the moment: The Girl Who Played With Fire (Stieg Larsson), The God of The Hive (Laurie R. King), Orange is the New Black: MyYear in a Women's Prison (Piper Kerman), A Red Herring Without Mustard (Alan Bradley).  Awesome books!

Thanks for reading,

Thursday, March 24, 2011

Prader-Willi Syndrome and birthdays

[Note: If you are new to this blog, and want to know more about Prader-Willi Syndrome, please visit]

One of the first issues that often arise, in the lives of families and children living with PWS, is what to do about the birthday cake for the child's first birthday.

In any other families, this is a total NON-issue, right?  You just get a cake, or make smashes it or smears frosting all over their cute face (I have pictures of both my kids like this, so adorable), and life goes on.

But, when a child has PWS, the parents have been told from Day 1 of being diagnosed, that Food Is The Enemy.  The child - while totally uninterested in food in the first two years at least - has a faulty hypothalamus, and so at some point will begin to experience a constant, biting, gnawing feeling of hunger.  The parents' caution signals in regards to anything food-related go up immediately, of course!  And then...along comes the child's First Birthday, or the first birthday post-diagnosis.  For S's first few birthdays, we did do the Angel-Food cakes or the Jello desserts.  We've moved away from that at this point - our reasoning being, birthdays come once a year, and since her diet is not made up of birthday cake, it is okay for her to have a piece of her own cake - whatever flavor she's requested - on her birthday.

The birthdays of her peers have begun to present some unforeseen, although unsurprising, challenges.  S is in first grade now, and so she's begun to receive invites to her classmates' birthday parties.  On the one hand, I am thrilled with this development, as it shows that at this point, she is able to interact appropriately with her peer group, and develop relationships with them.  This will, I hope, make her years in gradeschool with these kids somewhat easier.  Her extreme awareness of and obsession with food, and her occasional behavioral issues, have not proven an obstacle so far to her making friends (well, at her age I'd call it more of a "Friendship Lite" situation).

On the other hand...birthday parties are a challenge.  I will be attending, with her, any of her friends' birthday parties for the foreseeable future.  (Maybe I should forewarn the kid's mom that I want a treat bag too?  Maybe with some G.odiva chocolates in it?)  PWS is so complex that it is easier for me to just go with S, than try to warn the parent of all the food issues that might come up for S during the party.  I have also recently learned that I may need to talk with the child's parent, regarding the activities during the party; S was recently invited to a birthday party which was held at a recreation center.  The invite simply said the kids should wear clothes comfortable for running around in.  Well, we arrive at the rec center, go up to the 2nd a gymnastics area...yep, you got it, the high bars, the balance beams, the big mats for doing lots and lots of somersaults, the whole shebang.  If I had known that was the nature of the party, I would not have taken S to it. 

S has never taken a gymnastics class and is not anywhere near being able to do gymnastics, owing to low muscle tone, gross motor skill challenges, and muscle/general fatigue.  It was an hour of watching all these other kids bounce and hop and climb ropes to the ceiling and swing on ropes and flip around on the low bars...while S and I walked around the area, I tried not to cry (not quite successful there), and I helped her do what she was able.  She still had fun, and I sucked it up as quickly as possible and we moved on.  I'm sure birthday girl's dad thought I was a little wacko; I/we made a choice early in the school year not to educate S's classmates' parents as to her diagnosis (I probably will choose differently for 2nd grade) so they could not have known that S wouldn't be able to fully participate.  As for my reaction to the whole situation, as I said I almost cried outright, half-way through.  I know S has physical challenges owing to PWS - that has been clear from Day 1 of all this.  It's just that, the difference between her and her peers in this area is not, usually, quite this glaring - and not as "public".  There were other parents who had stayed for the party as well, just to be there....I'm sure they also were thinking "what the heck is wrong with that mom, and why isn't her child able to do all this stuff?". Lovely, lovely afternoon.  I did let her have a piece of birthday cake.

I, however, have learned my lesson.  Birthday parties have turned out to be one of those "harder than expected" things, in our journey with PWS.  S brought home another birthday party invite yesterday; I will now be helping her with her inevitable, PWS-based anxiety about an event that is still two weeks in the murky (for her) future, and I'll be calling the parent to inquire as to the party activities.  I am dreading the day she brings home an invite to a birthday pool party....if we can't avoid taking her to that one, my treat bag for that one better be pretty awesome!! 

Thanks for reading!


Tuesday, March 22, 2011

Prader-Willi Syndrome questions, #7: What has been the biggest adjustment?

Q. What has been the biggest adjustment for your family, living with your daughter's diagnosis?  What has been easier/harder than you expected?

A. I think my answers to these questions change, somewhat, as time goes by.  S is only 7, so there are parts of PWS which we have not had to tackle yet!  And I am trying to think in general terms here...I'm "wordy" to start with, and PWS is a complex syndrome which affects each child and family a little differently.

I think the biggest adjustment has been, simply, adjusting to the idea that S has special needs!  This has changed who we are as parents, because we have an extra level of care we need to provide for S.  We can't just "coast" with her - and by that I mean, we will never be able to assume much, about her future.  For our older daughter, who does not have special needs, B and I can assume lots of things: that she'll be able to make friends with her peers, that she'll be able to finish high school, go to college, find a job which will support her without the help of state-run programs, move out into her own place, maintain a 'normal' relationship with boyfriend, and if she chooses, to eventually get married and have children. (And yes, I know we can all think of situations, among family/friends, where the "normal" kids in the family have not been able to do these things.  But, I think generally, most parents assume their kids will do these things, and in most cases, their assumptions/expectations for their kids are fulfilled.)

S, on the other hand, will never be completely independent...I do have hope that research will discover things to help our children!  But, for now, I am going on the assumption that S will always need some kind of supervision.  This is neither good nor bad - it is, however, a reality to which we've had to adjust, as parents.

How we handle food issues, and how we even think about food, has been another adjustment!  I think one of the most useful bits of advice to give to parents of newly-diagnosed children, is this: "start paying attention to the nutrition labels on every single bit of packaged food you buy, and buy a book which gives calorie counts for fresh foods"!  The dietitian and the endocrinologist we see with S told us when we needed to really start counting her calories - and reading the nutrition labels for the calories-per-serving (among other info) was really enlightening.  I was shocked to learn that there are over 100 calories per 1/4 cup of raisins...RAISINS!  Do you know how often little kids eat raisins or dried fruit?  I think because of the concentrated sugar, dried fruit is actually pretty high in calories.  So we quickly cut that out of S's diet.  We have made lots of other changes; we use Splenda although I've never been crazy about artificial sweeteners, we make good and constant use of measuring cups to make sure we're not giving S too much, things like that. 

I know I have thought more about "food" in the past 7 years, than I ever expected.  I have also become MUCH more aware of how ever-present food is in our society here in the states (maybe in other countries too, but I'm not well-travelled!).  It is EVERYWHERE - ads about food everywhere you look - on buses, in magazines, on the radio, in the coupons we get in the junk mail. There are whole tv channels about cooking food.  School fundraisers, generally, revolve around the sale of some food item.  Classroom parties are, generally, junkfood-fests.  Although teachers are getting away from this a bit, in many classrooms 'good' students are still rewarded with food.  Want to show someone you love them?  Give them a food-based gift.  Halloween/Easter/Thanksgiving/Christmas?  Holidays which for most people would not be quite the same without the food element.  So, figuring out how to navigate through all of this, and still keep S healthy, has been a huge challenge, and will continue to be one.

I could go on, but I'll stop here.  Thanks for reading!

Monday, March 21, 2011

The ABC's of Me

[Cue music: "Getting to knooow yooouu, getting to know alllll about yooouuu"]

A. Age: Old enough to know better! (oh, oKAY, late thirties)

B. Bed size: king well, B snores!

C. Chore you dislike: putting away laundry.  Seriously. We live out of baskets.

D. Dogs: Yes! Meet Henry, over there to the right.  He doesnt always look irritated with me, honest.

E. Essential start to your day: COFFEE.  And my breakfast of choice these days is toast and one egg.

F. Favorite color: Purple and yellow....but starting to waver towards a mossy green.

G. Gold or silver: Oh, silver.  I'm just not a gold person.

H. Height: 5 feet 4 inches, and shrinking.  Sigh.

I. Instruments you play(ed: I took about six years of piano lessons, so I can still play. 

J. Junk Food:  Either light butter popcorn, or Cheddar Cheese Q.uakes rice cakes.

K. Kids: Two.

L. Live: earthquakes, wildfires, tsunamis, hurricanes, avalanches, or any threat of falling completely off the continent.  And fairly infrequent tornadoes.  Beautiful autumns, tolerable winters, decent springs and summers.  Love my state!

M. Mom’s name: Eleanor

N. Nicknames: Jen....that's all I'll allow! 

O. Overnight hospital stays: Only for having my two kids. 

P. Pet peeves: Repetitive noises: sniffing, hiccupping, knuckle-cracking, gum-snapping, loud chewing, bowl-scraping, crunching on hard foods....I know, I'm strange.  My husband tells me that all the time.

Q. Quote from a movie: "Because I'm older and I have more insurance."  I SO want to use this line, in the same situation as in the movie, someday.

R. Righty or lefty: Righty

S. Siblings: Sister, Brother, Brother, Sister, Brother, Sister, Sister, Brother, Brother, Me.
T. Time you wake up: I get up at 7 on school days, to get the kids off to school. And then some days, once they are off, I take a nap.  Only sometimes.  It's a bad habit, I know.

U. Underwear: Always. 

V. Vegetables you don’t like: Well, there aren't any I can think of, which I absolutely won't eat...I am allergic to onions though.

W. What makes you run late: Sleeping too long.  And Checking my farm on Farmv.ille.  I KNOW, I know, another bad habit.

X. X-rays you’ve had: Hmmm....maybe a chest x-ray, once when I thought I was having a heart attack?  And I think I've had one/both feet x-rayed - potential hammertoes, and plantar fasciitis.

Y. Yummy food you make: I made some hackin' awesome chili just last hands still smell like onions.

Z. Zoo animal favorites: The giraffe.  What is the plural, if I'm watching a group?  "Giraffes"?
Well, I am having fun with this, I'm sorry to come to the end of the alphabet!

Sunday, March 20, 2011

Marriage is hard

I know, I know, I'm stating the obvious.  I'm stating something I should probably know by now, after 15+ years of it.

I put a post on here, earlier today, which summarized quite succinctly the state of things, here, in my marriage, lately.  It was only up for about 2.5 seconds, so only two people (that I know of) read it.  I quickly took it down, because while was it the truth as I see it, it still isn't fair to my husband to post such things on my public blog, where he has no opportunity to give his side of things.  That post was from my perspective - neither right nor wrong, but perhaps not accurate from his perspective. 

Being married is hard, for me...for several reasons.  First, I don't come from a background of having happily married parents.  I've written about that in previous posts (under the 'marriage' subject heading, probably), so I won't get into again here.  Secondly, I take meds for depression/anxiety - and while I am glad to have access to drugs which help, said drugs don't completely erase the reasons for which I take them.  In other words, my demeanor/personality are still affected by depression/anxiety.  Third, I am not by nature a bubbly person, and so the stresses that come with parenting/marriage REALLY flatten out whatever bit of  "bubbly-ness" I may have left, at my age.  Sometimes just getting through the day is a struggle...I don't have much left, through all that, for "bubbly".  Plus, parenting a special-needs-child is SUCH a balancing act, sometimes, between B and I.  I'm here the most - heck, I'm the stay-at-home parent - and so S gets used to my way of doing things.  Keep in mind, this is a kid who needs structure and routine.  So when B sticks his neck out, and either does something different or suggests handling something a different way, voila, our parenting styles clash and S gets upset.  This happens often, unfortunately, making a tense situation worse.

My life is pretty good, all things considered.  I have a lot to be thankful for, and I do actually feel okay about where I'm at, right now.  I guess I'm just not comfortable being expressive, and showing that I feel that way about my life.  Which thus makes my husband believe that I'm consistently angry...miserable...angry...etc....and while I will admit to having been angry about various things for a long while, I'm not anymore.

So tired.

Friday, March 18, 2011

I'm a Guest Blogger!

Hello all,

Today (Friday, 3/18) I am a Guest Blogger over at Heather's blog "Serve One Another In Love", located at

My post is the first in a new series she is doing, called "My Faith Fridays", and my particular post touches on how being a special-needs parent has affected my faith life.  I would love it if you would stop over there and check it out - and leave a comment (either here or there).  Heather's blog is very "approachable" and worth reading, I hope you'll check that out too.

Thanks for reading.

Thursday, March 17, 2011

Seven things that make me happy!

1.  The weather!  Warm-ish today - sun is out, the birds are tweeting away.  Fortunately, the birds can still tweet without needing a calling plan from V.erizon Wireless or where-ever. Ha ha.

2.  Guest Blogging!!  SO excited.  Tomorrow (Friday 3/18) I will be Heather's first "My Faith Friday" guest blogger, over at  Thank you Heather!   Also check out her blog, it is really good!

3.  Tax returns which will, hopefully, help us get rid of some debt...YAY.  I will admit to a moment of being tempted to blow the whole amount on a really wonderful vacation.  But, while a great trip would be fun for the moment, it will be MUCH more gratifying in the long run, keeping more money in the bank and being able to buy groceries without having to resort to the credit cards.

4.  Knitting/crocheting!  Keeps me sane, keeps me out of trouble (somewhat). To the left is a photo of the three most recent prayer shawls I have knitted for my church.  A great way to use my talent for knitting nice, cozy rectangles!  I have been told that the recipients of these really appreciate them.  Very cool.

5.  Writing!  And knowing that both people I know, and People Out There, read what I write here and like it!  Or, at least read it :-)

6.  I am sooo glad the weather has gotten nice enough here, to be able to walk the dog after dinner.  The dog appreciates it (it's funny how insanely excited he gets when he recognizes the "going for a walk" signs: two plastic bags, the 'special' leash', it's after dinner, everyone is getting coats on but #1 Human (me) is NOT getting cars keys...), we all get some exercise, it gets us out of the house and away from the Wii.  Yay!

7.  I am so excited, I took some of my Zentangle notecards to a print shop earlier this week, to see if they could scan the design and print up multiple copies, so that I can sell them as a pack.  If this works it will be awesome!  I'm looking forward to seeing the finished product.  [Update, they are done, I am going to pick them up now!]

Have a wonderful day!

Later, Jen

Saturday, March 12, 2011

Prader-Willi Syndrome questions, 6A - How to help

[Further thoughts on the answer to this question, originally posted here.]

Q. My grandchild/niece/nephew/friend's child has just been diagnosed with PWS. How best can I be of help to them??

In addition to learning about the syndrome and respecting the decisions the parents make in the care of their child with PWS, there are some additional ways to help the individual with PWS and their immediate family:
  • Because children with PWS are at their best when they live in an environment of routine and structure, be consistent when you spend time with that child (or adult!) with PWS.  If you say you are going to do a certain activity with them, then do that activity with them.  Do not ever, ever, ever mention something in passing to that child, if you have even the slightest doubt about being able to act on it.  Also, once the child knows about an upcoming activity, they will often become obsessive about it.  So, if at all possible, don't talk about events or activities with the child, which are happening any further into the future than that day or possibly the next day!
  • Parents of children with PWS often find that attending family parties or holiday gatherings are extremely stressful situations - because these events so often center around a huge meal or a big table packed with food!  Obviously this creates not just an anxious situation for the child with PWS (if you felt you were starving, constantly, wouldn't you feel overwrought at such a display?), but a dangerous one as well.  Children with PWS cannot sense when their stomach is full-to-bursting, and so when well-meaning relatives keep slipping the child "a little of this" and "a little of that"...well, pretty soon that child will need to be rushed to the emergency room.  Thus, if a parent of a child with PWS tells you that in order for their family to be able to also enjoy a family party or a holiday gathering, some adjustments to the menu and the eating schedule would be necessary, listen to them.  Yes, it may mean that some eating traditions will have to what?  You can make new ones, right?  And, what is more important: being able to see your grandchild/niece/nephew/family friends, or having a table overstuffed with way more food than anyone should eat?
Some communication guidelines for interacting with individuals-with -PWS (I am finding these increasingly helpful with Sophie):

-Keep your communication simple - at least until you get to know the child/adult better, and know at what cognitive level he/she functions.
-Approach the child/adult with "subdued emotion".  PWS is a syndrome which is on the autism spectrum; actually, individuals with PWS are often also diagnosed with autism. What this means in terms of "subdued emotion" is that individuals with PWS are often uncomfortable with excessive emotion. It is as if that level of feeling - happy or sad - is more than they can handle. 
-Don't take it personally when the individual with PWS responds in a grumpy/mean/hostile way, to something you've asked or said.  Being able to regulate emotions is something which is managed by the hypothalamus, and since that gland is the one affected by PWS, emotions can swing between calm and happy, to upset and angry, over seemingly small things.

Finally, just a few words of advice on what not to say to parents of a child with PWS:
  • "She'll grow out of it!"   Ummm, no, she/he won't grow out of it.  It's a genetic syndrome, it's part of him/her forever.
  • "Hmmmm, he/she is always hungry and asking for food?  Wow, maybe that's what my dog has!"  Yes, indeed, this is a comment that is made. 
  • "You worry about (fill in the blank), with your child with PWS??  Oh, that's nothing - all parents worry about their children!"  Really?  Do you worry about your child ever having real friends, once her challenges become obvious to her peers?  Do you worry about your child eating out of a trash can at school?   Do you have to lock your refrigerator and cupboards, because your child will get up in the middle of the night and possibly have a fatal eating episode?  I have found it exceedingly frustrating when other parents say "oh, my parenting experience with my non-diagnosis children is just like your experience with S!", because in essence what they are saying is that they don't think my experiences are real, that I don't have any extraordinary challenges on a daily basis.  And while I know people sometimes say things in an effort to make me "feel better", or in an effort to seem understanding, honestly I can say that most parents of special-needs-children simply want to be heard.  They want their experiences to be validated and accepted for the very real things they are.  We aren't kidding, folks.  PWS sucks, and this is hard.  It IS an out-of-the-ordinary life.  My child's constant hunger is NOT like your "normal" toddler asking for a snack a few times a day: for S this is HER LIFE, for your toddler it is A PHASE.
Well, wow, this is getting long again, so I'll stop here.  Thank you for reading!

Friday, March 11, 2011

I Am "EveryParent"

I am...

  • every parent who has lived through months of being sleep-deprived, living with a newborn.
  • every special-needs parent who hopes and prays that other children will be kind to her child.
  • every parent who sometimes is convinced her children will be in therapy, blaming mom for everything, by the time they are 25.
  • every special-needs parent whose breathing actually stops when they worry about who will take care of their special-needs child, should something happen to them (the parent).
  • every parent who finds the belly-laugh giggle of a child to be the most delightful sound ever.
  • every special-needs parent who views their child's milestones as true miracles.
  • every parent who feels consistenly guilty that their child spends too much time on the computer.
  • every special-needs parent who wants to win the lottery, so that they can throw millions of dollars into research involving their child's diagnosis.
  • every parent who despairs, some days, that their children will ever get along.
  • every special-needs parent who feels like God gave them this particular child to teach them 1.5 million things about life (in addition to the 1.5 million things learned just from parenting, period)
  • every parent who rejoices when their children learn how to read.
  • every special-needs parent who suspects they may outlive that special-needs child...and their heart breaks at the thought that their older child will then be without their only sibling.
  • every parent who notes it as "oh, here comes THAT phase" when their 11-year-old daughter starts insisting that you knock before entering their room.
  • every special-needs parent whose spirit is lifted when their older child and their younger special-needs child are actually getting along, and being very kind towards each other.
  • every parent who knows that they need to do something for themselves, in order to have the mental and emotional energy to parent well.

I am every parent, every special-needs parent, whose heart walks around outside their body every moment of the day....and who hopes the world will treat her children kindly.


Thursday, March 10, 2011

Thankful Thursday!

Decided today would be a Thankful Thursday post!  Well....I'm thankful every day, but sometimes it helps to write it out, you know?

1. I am insanely thankful for every person who works with or for the individuals and families in the Prader-Willi Syndrome community, here in the States and around the world.  PWS is such a little-known and challenging syndrome - every bit of help, fund-raising, and support are SO needed and appreciated.

2. I'm thankful that, in spite of "me", God saw fit to have me meet, date, and marry Brad....he's a great father, he works hard and always has....and he puts up with all my weirdnesses and quirks. Why, I don't know.

3. I am thankful for every moment during which S, my younger daughter, is in an amiable and flexible mood.  The behavioral challenges that come along with PWS mean that she often has little control over whether she's amiable/flexible or belligerent/hard to deal with. 

4. I am trying to be thankful for the unceasing rain...glad it's just rain and not snow at this point!

5. I am thankful for vacuum cleaners that really suck up the dirt!  That's a little strange, I know - but since we don't exactly have the funds to get the carpets cleaned regularly, it's nice to have a vacuum that seems to really work well.  I'd love to get a D.yson vacuum, but wow they are expensive.

I hope you have lots to be thankful for!  Thanks for reading!

Monday, March 7, 2011

Rahna Reiki Rizzuto - Right or Wrong?

Over the past few days, I have been participating in a thread over on BlogFrog, in the S.I.F. community, regarding a woman named (Rahna) Reiki Rizzuto.

Wow, I am mentally tired from that particular cyber-conversation.  It was very intense, and I think I will stay away from BlogFrog for tonight, because participating in that thread left me jittery and anxious, today.  But, I do want to write this out here on my blog, not only because this woman's story is compelling but also because the BF conversation left me wanting to clarify my own thoughts about the concept of "motherhood".  I'm not sure I can do that in one I said, the conversation on BlogFrog became quite heated and more than a little complex.

Here is a link to the video of the interview with Ms. Rizzuto, which aired on March 3.  The transcript of the interview is here. And, here is a link to an article from, written by Ms. Rizzuto herself.

The story in a nutshell is this: Ten years ago, Ms. Rizzuto went to Japan for six months, to do research for a book.  Her husband encouraged her to do this.  They have two sons, who were at that time 3 and 5 years old.  Prior to having children, it sounds like Ms. Rizzuto had not wanted to have children but her husband "begged her" and said all she had to do was have them, and he'd take care of everything.  Well, after those six months in Japan (during which it became apparent to RR and her then husband that their marriage was in trouble), RR returned to the states, she and her husband divorced, and she agreed to her husband having primary physical custody of the boys, but they also agreed on a joint custody arrangement.  She chose to find a house down the street from her ex-husband's house, she sees her children frequently throughout any given week...she ultimately feels she's a better mother now than she would have been otherwise.

There are scads of people ready to rip this woman apart, for the choices she made.  She's been called a crappy mother, a poor excuse for a parent, a terrible person, a terrible woman, a money-grubbing author using her children - and her presumably awful decision to have their own father be the full-time parent (gasp!) - to make a buck.

I do not think that the choices she made mean she is a bad person, or a bad mother.  She did not, as many are accusing, "abandon" her children.  She ultimately spends about the same amount of time with them, over the course of 7 days, that many working fathers spend with their children.  Her children seem to be living in a arrangement which, while different from the status quo, still leaves them supposedly well-cared for by their father, their step-mother, and their mother who lives down the street.  I think the fact that a woman willingly gave up the primary caregiver responsibilities for her children is what has everyone gasping and condemning her.  Because women aren't, I guess, supposed to want anything other than to have children and then lose their entire identity in those children.  Because it is apparently unforgivable (even though her ex-husband begged her to have children, even though he obviously knew she wasn't the motherly "type") to expect that a child's father should ever have to do the day-in, day-out nitty gritties of parenting.  It is apparently unforgivable to think that perhaps women might want what men have had lots and lots of, throughout history - the freedom to have children and then go back to their regularly-scheduled life.

Now, understand that I do know that parenting is a commitment.  I do believe that the very moment a man and a woman decide to be intimate, let alone decide outright to have a baby, their first priority becomes the child if one is conceived.  Even if they get divorced, that priority doesn't change.  But I don't believe that becoming a parent nullifies who someone is as a person, or who they were before children.  I believe women have value as humans first and foremost - whether or not they ever have children.  I believe that if a woman has God-given talents and skills (and yes I do believe those come from God), she is required to explore those talents.  I believe that parenting children - while one of the most important jobs God gave humans - was never meant to be a women-only pursuit, and I believe that both women and men can be wonderful primary caregivers. 

I hope, if there's anyone reading this, that you will take the time to click on the links above. What you'll read and watch/hear tells at least some of her story, better than I can.  Also, if you belong to BlogFrog, you can find the thread in the S.I.F. community, titled "Leaving the family she never wanted. Reiki Rizzuto".

Thank you for reading!


Saturday, March 5, 2011

A season of discipline for grown-ups

Lent approaches.  (listen to me heave a big sigh.)

Lent, for those of you who may not really be familiar with the term, is the 40 weekdays before Easter, beginning with Ash Wednesday (March 9) and ending the few days just before Easter - Holy (Maundy) Thursday, Good Friday, and Holy Saturday.  Lent is a season observed mostly by Catholics, and also by denominations within the Protestant community (although with different traditions/customs than Catholic churches).

I grew up Catholic.  Indeed, since I have not gone through classes and been formally recieved into the Episcopal church, I suppose I can still call myself a Catholic - although I haven't attended Mass in, oh, about 7.5 years.  My husband grew up in a Protestant denomination; as a compromise (and so as not to confuse the children!) we attend an Episcopal church.  Our older daughter was baptized in a Catholic church; our younger daughter was baptized in our current church.  Oh, my head is starting to hurt - so complicated!

Anyway.  When I was growing up, right up until I moved out of my parents' house and perhaps for a few years after that, I observed Lent as a Catholic.  No meat on Ash Wednesday, went to church on that day, no meat on the Fridays during Lent.  Always went to church on Palm Sunday.  Usually helped my mom take baskets with special ethnic "Easter foods" up to church on Holy Saturday morning, to be blessed.  Sat through an endless Holy Saturday vigil which sometimes lasted until almost midnight.  I went to a Catholic gradeschool so in my memory of those years, it seems like we were forever doing the Stations of the Cross during Lent.  It was the whole nine yards, for a good many years, including...

"Giving up something" during Lent. Well, what does that mean? I think I gave up eating chocolate during Lent, several times.  Two years ago, I gave up reading anything during Lent except the Bible (I think there may be a post on this blog about that!)...I don't remember how successful I was with that.  On the website, Lent is defined as a season "traditionally...marked by penitential prayer, fasting, and almsgiving...Most Christian churches that observe Lent at all focus on it as a time of prayer, especially penance, repenting for failures and sin as a way to focus on the need for God's grace.  It is really a preparation to celebrate God's marvelous redemption at Easter, and the resurrected life that we live, and hope for, as Christians....Lent is a way to place ourselves before God humbled, bringing in our hands no price whereby we can ourselves purchase our salvation."

Those are some powerful words.  How do they translate to me, in my day-to-day "stuff"?  In what way would I combine the above description with my Catholic background and my current Episcopal affiliation?  I no longer do the "don't eat meat on Fridays" thing (although I will admit, not doing that took me a while to get used to).  Where I am these days, religiously speaking, is a complex thing - and it's made more important because now, I have children for whom I have to be an example.  So, I'm not sure, this year, what to do with "Lent".  Somehow, compared with the intensity of the description of Lent above, "giving up playing Farmville during Lent" just doesn't seem to fit, somehow, you know?

Well, I have three more days to figure it out.

Thanks for reading,

Friday, March 4, 2011

Fabulous 5-Question Friday!

Heeeeeeeeeeere it is:

1. Have you ever forgotten your child in a store or at school?
I have never forgotten either child in a store....probably because any store I am in with them, one or both of them is, ahem, probably raising my blood pressure about something!  I will admit that I have come pretty close to forgetting I have to pick up my older daughter from something - but never to the extent of being more than 5 minutes past time.  When the kids were little - like, strapped-into-the-baby-carrier-little, I would sometimes as I drove somewhere have a minor panic attack that I had forgotten them...not a great feeling.  And come to think of it, I think I had a dream recently where I went somewhere and completely left the house without them.  One of those dreams where you wake up and feel really unsettled the rest of the day!

2. Where did you go on your very first date? (Like...first first, not first with your spouse or current significant other!)
Wow, I really have to think back on this one.  I went to an all-girls high school (had a big stone wall around it, not kidding), so dating wasn't something that started happening as soon I hit the entrance doors, the first day!  Ummmm....honestly, I think the first date I had was probably a high school dance - Homecoming or something - with a guy who went to an all-boys high school.
I do remember the date I was on with boyfriend-now-husband, when I just suddenly knew we were going to get married, that he was The One....we were in a Pizza Hut, sitting there waiting for our pizza.  Pretty romantic, eh?

3. What's your "silly" fear? (We're not talking water and heights.)
Falling down the stairs!  Not sure why, as I've never yet taken a tumble down any stairs.

4. Confrontation: do you cause it, deal with is as it comes, or run far far away?
Lately, I've been causing it.  It's not a great feeling, but it involved things that had been bugging me for quite some time and I could not let it go one second longer.  It sucked, and confronting things did not completely resolve the issue, but I'm still glad I did it!

5. Wood floors or carpet?
Wood in the dining room and entry way.  Carpet everywhere else except kitchen and bathroom. I think wood flooring is definitely easier to keep clean, but carpeting (and I mean wall-to-wall, not throw rugs which just make me trip!) is much more 'cozy'.



Tuesday, March 1, 2011

A little bit of my "artwork"

A few months ago, as I waited for my older daughter at her dance studio, I watched another mom as she practiced "Zentangle".  She had actually been taking classes in this at our local art museum.  What she was doing was so interesting!  I couldn't afford the classes, and when I looked Zentangle up online, discovered that there are books out there that can be used to teach oneself.  Much less expensive than the classes, although I'd love to do that too sometime!  Anyway, here are some of the results of my efforts.  My sister graciously offered to feature some of these, for purchase, on her Etsy site at - where you can also view/purchase some of her handmade, gorgeous jewelry, and also see/purchase some of my mother's beautiful tatted ornaments/jewelry.  Enjoy!


"artist's trading card"

set of four "trading cards" - can be used as gift tags, or simply slipped into a letter/card