Sunday, June 6, 2010

You Know You're a PWS Mom/Dad If...

Another PWS mom friend posted this question on her Facebook wall and tons of other PWS parents pitched in to fill in the blank. The answers were all true and hilarious and sad at the same time. I know some of them won't make sense if you are not familiar with all the ins and outs of the syndrome, but here it is anyway - a great window!

You Know You're a PWS Mom/Dad If...
-you are driving with one kid in the car and you wonder which therapy you are going to.
-you occasionally carry things like vegetables and tofu with you to add to restaurant meals.
-you are actually excited when your baby cries over something or wakes you up in the middle of the night!
-your child has had so many x-rays,ultrasounds and MRI's you wonder if they will develop superpowers.
-toys aren't just toys anymore. You look at them as "what will this teach my child to do?
-you critique every parent's use of food with their children.
-you defend growth hormone and hate athletes for giving it a bad rap.
-it kills you to see babies younger than your own doing more things.
-you've tried some kind of supplement in the hopes it will help.
-you don't mind waiting an extra 20 minutes to get out the door so your child can work on fine motor skills dressing herself.
-you can count calories in your sleep.
-you cheer your toddler on for climbing the stadium steps and forget to watch your teen who is actually playing.
-you talk about your kids therapy like every kid has it and get odd looks from your friends.
-you 'accidentally' drop your child's toy on the floor over and over again when he picks it up and gives it to you to work in some PT with bending and squatting...
-you dread your child's birthday party because you know he will be begging every adult for another piece of cake when you're not looking!
-you hate holidays because they all involve massive amounts of food.
-you use an inflatable pool float inside for prop sitting, crawling position, and who knows what else.
-you let your baby pull your hair because you're just glad they're reaching for something.
-you consider pureeing peas and "icing" steamed broccoli with it for a first birthday cake (lol)...
-you treat each milestone like an olympic gold medal.
-you consider putting a giant sticker on their shirt that says "Please don't feed me anything, my mommy will kill you" when sending them to church daycare.
-you want to slap the next person that says "my, she's fed well" or "look at those chubby cheeks" even though she's in the 50th % for weight.
-you walk into the hospital and all the staff call your child by their first name before you even make it to the reception desk.
-the first thing you always buy when you arrive in a new country on vacation is a scale.
-you jump when the oven timer goes off because it sounds like the apnea monitor alarm.
-you still giggle sometimes when he cries because you remember a time when he never cried at all & you actually wanted to hear it.
-you have more Facebook friends who are also PWS parents than friends from school/work.
-you want to eliminate gumball machines from the face of the earth. And have healthier food options available everywhere. Let's start with schools for instance, is that so hard???
-you stand in the pantry with the light off to snack on chips! lol
-you get out the camera when they have figured out how to climb onto the dining room table.
-you are encouraging them to jump on their bed, while your friends are telling their kids to stop.
-you don't think it's a compliment when someone tells you, "He's such a quiet little boy".
-you prepare for an overnite everytime you go to the E.R.
-you know which restaurants serve steamed veggies.
-you check out "healthy recipes" on the web.... and end up thinking, who are they kidding, this isn't healthy enough!
-you start guessing the portions of your food on your plate..hmm, that looks like about 1/2 cup, or I had around 1200 calories today.
-you give your child their HGH injection and stop feeling super bad for doing it knowing it's for their benefit.
-you actually got excited when they threw their first tantrum because they were just being a typical 2 year old. Then quicky thought about the endless tantrums to come....
-you second guess everything - is this age appropriate behavior or PWS?
-are amazed if they vomit.
-you dread telling them about a fun event too early, because they will talk and talk and talk about it to no end. Really wears me out :0) but at least she can talk now:)
-you dread going to the grocery store because it's a 2 hour event after you read all the lables
-*you* start suddenly gaining weight for no apparent reason and you think, Ah, I must be in stage 2A. :\ Or heck, even if you know what stage 2A is.
-you tell them at every doctor's visit that their baseline body temp really IS that low and then they take the kid's temp and say, "oh, he must be cold." Ugh!


Janet Gulley said...

Really need to lighten the mood on my blog. Stealing this one from Rhea and you (and all the contributors).

Joey @ Big Teeth and Clouds said...

That's is a list that lightens the mood but also shows that you are on quite a journey.

Haley said...

That was a great read. Really neat to read the perspective from all different parents in different stages. Some funny, some enlightening.

I can actually relate to some of them in the food category. Having a son with multiple life threatening food allergies makes you realize how much food is the center of EVERYTHING in our society! When you have to read every label, critique every menu and warn everyone who comes in contact with your kid not to feed them anything without your approval first it can get quite trying (and tiring) but you do what you have to in order to keep your kid safe. You are doing a great job with Dean!!

Kevin said...

Our society and food is a big problem. PWS and allergies magnify it, but the problem is throughout. We eat for all the wrong reasons and we offer food to others for wrong reasons. How many social gatherings have you been to that don't offer food?

Ali Foley Shenk said...

It's true! Food is everywhere. We have felt on edge enough with making sure that Cole is safe, and now we will have to be on guard or Deano too. Thing is, people need to eat, so where's the balance?

Kimberly said...

I love this, its so sad but so true at the same time.

Michelle said...

Love this! So true! Sad but true.

Candice said...

I can relate to a lot of these as can most special needs mamas!! Hugs.

Kevin said...

Everything you are saying really moves me. All the things you say ring a bell in my head since those things have happened to me. I am a ADD dad and experienced those things. When you say: "toys aren´t just toys anymore, you wonder what they teach to your child"
I so understand you. Treating add is not easy and can only be overcome with patience and love.
Hope everything will go well with you as well as with me.

Ali Foley Shenk said...

Kevin, glad those were helpful to you. My hope was that it would both help people understand more of what PWS is like and speak to others to whom it also applies. God bless.