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 change...so 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!
Later,
Jen

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.

Later,
Jen

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!
Later,
Jen

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 post...like 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 http://www.salon.com/, 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!

Later,
Jen

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 http://www.crivoice.org/, 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,
Jen

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'.

Later,

Jen

 

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 http://www.skyblueruby.etsy.com/ - 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!

Notecard

Notecard

"artist's trading card"

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

Later,

Jen