PWS Awareness Month- Day 20

Hey Everyone,

Yesterday we discussed Kemett’s complex diet, and you may be wondering, what would it be like to have you all over or to come over to your house?

Kemett has not entered the phase of food seeking or insatiable hunger, however, that does not meant that we aren’t doing everything we can now to set up structure and safety in his life, the best we can.  We feel that if we have this structure in place, that when he does enter these phases, it will make life a little easier (we hope).  We do not lock up our cabinets or fridge yet, but the moment Kemett sneaks food, we will be buying locks.  To us, Kemett’s safety is our number one concern.  We do not let him hang out in the kitchen.  We’ve told him the kitchen is for working- cooking, doing dishes, etc.  If you aren’t working then you aren’t in the kitchen.  He’s gotten a lot better about listening to us about this and leaving when we ask.

We ask his school not to do food related crafts, not only for PWS, but also for his allergies.  He could stick something in his mouth so quickly that he’s allergic to and that is not safe.

We try to find books, toys, etc that do not have food in them.  He, of course, can name food that he eats, but there are so many other things that he can learn from books.  He does have a play kitchen, and at Christmas we gave him some stuffed fruits and veggies from Ikea.  He pretends to cook, but it’s not his focus yet.

At this point, he could move into the food seeking phase at any time, and so I am on edge when he says certain things or asks certain things.  Some might say, “That’s typical toddler behavior,” but as a PWS parent, we have no idea what is PWS and what is typical.  So please don’t judge us for over reacting or being anxious about something.  And also, please know that we aren’t trying to hurt your feelings if we let you know that something you gave Kemett had food in it.  We just want you to be aware for next time, and appreciate it.

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You can read last year’s blog on this topic, if you want to see how we came about making these rules below (2015 Blog Post).

Below are rules we follow in our home and expect family/friends to follow as best they can.  If you have questions, please ask us.  We never want people to feel uncomfortable!  We want everyone to feel inclusive!

  • We eat on a schedule, or close to one (we are flexible) and it depends on when he gets up, but we try to feed him every 2 1/2 – 3 hours.  So here we do 7:30, 9:30, 12 or 12:30, 3 and 6.  We are flexible, but need to know a schedule change in advance to make decisions for Kemett’s diet that day.  And Kemett does great if we are out and about.
  • We don’t eat family style.  We serve from the kitchen so Kemett doesn’t get preoccupied with food.
  • We only get seconds in our house at the moment.  At some point we may not even do that.  Even Andrew complies with this rule.
  • We don’t snack holding Kemett.  So if you have him in your arms, just don’t grab food and eat it.
  • We also do not snack in front of Kemett outside of his snack time.
  • All of our eating is at the table if Kemett is awake.  If he’s asleep, we don’t limit where you eat. But if he is awake and in the living room, please don’t bring food into the living room to eat.
  • Don’t feed him or your child off of your plate.  We do not share food with each other.
  • Please do not feed Kemett anything without asking Andrew or myself.  We do not feed Kemett outside of our schedule above, so please try to be cognizant of this or ask us in advance if we can change our schedule around for a special event.  We will be honest with you if that will not work.
  • Wash your hands if you eat something Kemett is allergic to before you touch him or anything else.
  • Be careful for cross contamination- is your work surface clean from allergens? Did you get a new utensil/pan/plate, etc if it touched an allergen?  Did his food touch food with an allergen in it?
  • Just be patient with us around food.  Most don’t understand until they are around us full time and then they get it.
  • Please try not to use the words hungry or starving.  We all know that Kemett does not truly understand these words yet, but one day he will and it might trigger something for him.  For us it has helped to start putting this into practice now- it’s amazing how many times we catch ourselves saying them.

These rules are in place for Kemett’s safety and health.  PWS is life threatening so food is no joke for us.  He could die if left unattended with food.  

We recently had a crawfish boil, our first event since we had Kemett.  I sent out an evite that also had rules around food for our household.  I asked people to stay inside if they were going to feed their kids, and that outside was for playing and the crawfish.  I also only served Kemett friendly foods, so that no one would be scared about allergens.  I was anxious about having people over, but putting this information out there, and it being successful, made me feel so much better.

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Last year’s blog had some great questions regarding playdates/peers.  I decided to share them below:

  1. What do you want friends of Kemett to be most aware of (I’m thinking food/allergy wise) for safety reasons?

I think one of the most important things is to not share food.  We don’t let Kemett share food with us or with anyone because we want him to understand that it is not ok to do that.  For playdates or outings, I would say not to have food out and easy for Kemett to access.  

Also, food treats are not ok, even if they are healthy.  For school parties or at home (Halloween/Christmas/Valentine’s day), we’d appreciate you providing not food items (or letting us know you have food items and we can provide an alternative.)

In regards to birthday parties or get togethers, we have been asked what a healthy alternative is for Kemett.  We appreciate when people ask us this, since Kemett can’t have the cake, but we also just want people to realize that there is also a safety risk for us if you have lots of food sitting out.  At the moment, Kemett doesn’t ask for food or have anxiety around food, but one day, we might not be able to attend your party or get together if we know there will be food out and people grazing the whole time.  Kemett could get into food, and that would not be safe.  

  1. I want to ask if you want us to talk or not talk to our kids about anything specific before meeting Kemett.

We have started telling him he has a special tummy.  We want Kemett to understand that there are foods that will hurt him or make him feel bad and so that’s why he can’t have them and other people can.  

Also, not related to food, but kids might notice that Kemett isn’t as fast as they are.  You might tell them that Kemett is just catching up.  We are very honest and open with everyone about Kemett and to Kemett himself and plan on staying that way as he gets older.  

  1. My question is, when we have a play date, which I hope we do soon, how severe are his allergies? Do I need to be cautious to not have something with peanuts around? As the boys get older I also want to be careful to not have something tempting around that Kemett can’t have so thank you for sharing some ideas of snacks we can include for everyone.

We know that Kemett has a high positive on his blood tests to all of these foods above.  He has never consumed them so we do not know his reaction.  We carry an epi pen around just in case.  We eat peanut butter and have mixed nuts in the house, however we are very careful about it all.  We try to eat them with he’s asleep, but if he’s awake and we are doing almond or peanut butter, we make sure to wash counter tops and our hands before we touch Kemett.  So I’d say just don’t serve nuts when we are around- they are tiny and I’m scared he might pick one off the ground and try it.

So here are some snack ideas.  Also, I always bring food for Kemett, so if you are having something Kemett cannot eat, I am happy to bring Kemett his own snack.: 

  • Seeds (pumpkin or sunflower) and a fruit (berries or an orange).
  • Carrot sticks and hummus (make sure there is no soy in the hummus.  We use Grandma’s)
  • Coconut Yogurt and berries
  • Apple and sunbutter

Like we have said many times, this is an open subject for us!  No question is stupid, please ask!  I’d much rather everyone be comfortable than there be anxiety OR we are excluded because you don’t understand/scared/worried.

Thank you for all of your support and love!

Love,

The Demands

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One thought on “PWS Awareness Month- Day 20

  1. Melissa, I am so inspired by you! You have a monumental task in raising sweet little Kemett. I have learned so much from your blogs & I’m amazed at all the things you’ve had to learn. Kemett is blessed to have you both for his parents.

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