PWS Awareness Month- Day 23

Hi Everyone,

Today we are going to talk about the Foundation for Prader-Willi Research!  Andrew and I found them when Kemett was about 6 months old, and immediately decided this is where we wanted to fundraise and donate personally to.  We, along with our amazing co-hosts, are proud to say we have raised over $190,000 in the past two years with our One SMALL Step Walks!  100% of this money goes to research.

When we found FPWR, we found an organization that gave us hope for Kemett’s future.  We also got the added bonus of finding our PWS Family.  At our first conference in 2014, we knew we were in the right place.  It feels so good to be around amazing people who want the same things for their kids and who get it.  They get what you are going through because they are going through the same things.

Two years ago, my walk co-host and I hosted the FPWR National Conference here in Austin.  What a privilege it was to work on this conference, and have everyone come to your home city.  Last year I served as Community Leadership Chair for FPWR which works to connect new families to mentors, resources and provide them with pertinent information through webinars and on private facebook groups.  And last June I became full time staff as the Development Assistant and am now the Donor Relations Manager.

We wouldn’t be doing all of this, if we were not passionate about FPWR and the work that they do.  Below, I have attached their 2015 Annual Report so you can read all about where their funding comes from, the research programs they funded this year and more!

A few years ago there were no clinical trials happening in PWS, but now because of FPWR and everyone who has generously donated we have multiple trials going on, as well as groundbreaking research!  FPWR has also adopted a 5 year research plan that will help accelerate research and development of treatments for PWS.

This is why we educate, spread awareness and bombard you with information all year round.  This is why we ask you for money every year.  It’s because we know they will find something that will allow Kemett to live independently!  Something that will curb his hunger, help behavior and other aspects of PWS.  It’s because the more research is done the more we can understand this incredibly complex genetic disorder.  Please take the time to read the links below to learn more about FPWR.

5 Year Research Plan

2017 Funded Projects

FPWR Annual Report

Thank you to everyone who has supported our One SMALL Step Walk and FPWR in the past and future!

Demand One SMALL Step Fundraising Page

Please let us know if you have any questions!

Love,

The Demands

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PWS Awareness Month- Day 22

Hey Everyone,

 We hope that you all will join us for our 3rd Annual One Small Step Walk!  Details are below.  

One Small Step Flyer 2017-01 (1)

 

Love,

The Demands

 

One Small Step Walk for Prader-Willi Syndrome Research at the Belterra Recreation Center in Dripping Springs, Texas on October 10, 2015. Photo by Lauren Gerson.

 

 

PWS Awareness Month-Day 21

Hey Everyone,

Today we will be talking about behavior and mental illness.  Kemett has UPD subtype and it is known there is a greater chance of mental illness.

At the moment, Kemett’s behavior is pretty on par with a typical 3 year old.  We work hard with him on transitioning between activities, getting him to use his words when he is crying and upset about something, being flexible, pretend play and just general disobedience.  So far Kemett does great on a flexible schedule.  Food is on a strict schedule but he often turns down a snack to continue playing.  It’s weird because as a PWS mom, it makes me so happy to hear he doesn’t want dinner because he is enjoying playing outside or with his books.

We have seen some anxiety creeping up.  It’s happened a couple of times and it was hard to get him past what he was upset about.  He also gets anxious when we go on a trip, and usually says he wants to go home.  We have done social stories which is just a little book with what our trip will be about.  This tool has been great.  We’ve also started doing yoga 1-2 x a day, deep breathing and progressive muscle relaxation.  I want to give him all the tools we can so that he can help calm himself.  I know one day he may need medication, but I’d like to teach him mindfulness techniques before we get to that point.

Of course, I worry about this a lot and when will the other foot drop.  It could happen any day that he develops an interest in food and starts having meltdowns related to food, schedule, etc.  That’s why we are preparing now the best we can without knowing what the future holds.

Mental Health

In addition to their involuntary focus on food, people with PWS tend to have obsessive/compulsive behaviors that are not related to food, such as repetitive thoughts and verbalization’s, collecting and hoarding of possessions, picking at skin irritations, and a strong need for routine and predictability. Frustration or changes in plans can easily set off a loss of emotional control in someone with PWS, ranging from tears to temper tantrums to physical aggression. While psychotropic medications can help some individuals, the essential strategies for minimizing difficult behaviors in PWS are careful structuring of the person’s environment and consistent use of positive behavior management and supports.

We have known since diagnosis that mental health issues are more prevelant in individuals with UPD but it wasn’t talked about much until this past year.  There was actually a Mental Health Summit and mental health professionals from all over came to discuss Prader-Willi Syndrome.  Notes from the Mental Health Workshop

There is now exciting research regarding predictors of psychosis going on: Here.

Kemett does not exhibit signs of OCD behavior yet, either, however, this is quite common in PWS will probably develop at some point.

We are doing the best we can without knowing what the future will hold for Kemett in regards to his behavior or mental health.  All we can do is fundraise for research so we can learn more about what to look out for and what to do!

Thank you for supporting us and asking questions this month!

Love,

The Demands

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PWS Awareness Month- Day 19

Hi Everyone,

Today we are going to talk about school for Kemett!  This was a question asked to us several times leading up to May.

First, Kemett has been in school at our local church for the past two years.  This year he started going 4 times a week because I started working.  He’s in a 3’s class and is doing great.  Being around typical kids has really pushed him.  We have been working very hard on social interaction with peers this year.  Kemett has grown immensely in this area.

We have had some hard decisions to make, as we were trying to decide what was best for Kemett next year.  We decided to get him evaluated for early childhood education at our public school.  We had put this off because we liked his current school.  We decided to do it this year just to see what they had to say.  Andrew and I’s big thing was to make sure Kemett was put in an inclusive classroom because we want him to be pushed!  Kemett went through a long evaluation process- 2 in person and multiple observations.  His evaluations came back and he was evaluating at 4 years 1 month age!  He needs help with adaptive skills- toileting and washing hands, and of course his gross motor skills are lower.  But our boy is smart!  Which we already knew.

Up until this point, the school district has housed all the kids in one elementary school, and not the one he’d attend.  They have changed that rule for next year and kids will attend their home schools (which is a huge plus for us!)- we want him to be at the school he will attend for the next 7 years and it’s right behind our house.   His school district also does not have an inclusive program, which has been a reason we didn’t want to send him to public school, but this year they are making this a new program and starting with Kemett!  We are thrilled!

We had our ARD in early May, and it went so well.  We feel so supported and heard.  Kemett will be in general ed 4 hours and SPED 2 hours a day.  He will eat his lunch in sped and work on the items in his IEP.   We got the accommodations we wanted, and there will be no food in the classroom.  They will secure lunch boxes as well.  They will let us know about school parties and birthdays.  This will be an experiment.  We have decided that Kemett will need to learn to be independent in life, so he will participate in birthday parties at school.  It makes me incredibly nervous, but as you’ve read this week, Kemett is understanding his body more and more.

We have loved his current school, but it was coming to a point where we knew public school would prepare him better for kindergarten and beyond especially with the supportive services he needs.  It is a bittersweet move for us.  His current teacher has been amazing and done so much to educate herself about Kemett and accommodate him in her classroom.  We will miss our tiny school!

School is hard for me as a parent because I worry about Kemett, I advocate for him almost daily, and talk with his teachers almost daily about what is going on.  We troubleshoot different problems, we text and email.  I know this will be how it goes until he graduates.  It can be stressful, exhausting, frustrating, and satisfying when we get something to work.  I get by because of the times when I get to hear Kemett spell his name, or find out he entered a group and asked to play with them.  These are things I thought he might do, but have been worried about since he was born.  Kemett is showing us that he is so smart, a fast learner, has a great memory, and is social.  We just need him to be social with his peers, but I see it happening!  This is all because of his teacher, his speech therapist, and the work we do at home (especially right now his PRETEND study which we will talk about in another post).  I just hope that next year his new peers grow to love him as much as his current peers do.  I know he will miss his friends at his school, but I do hope he will make new ones quickly.  I hope he will be included by the other kids and asked to play.  I hope they will be patient with him as it takes him a little longer to process things.  I hope the parents are as understanding and amazing as the parents at his current school are to us.  There are a lot of fears for both of us entering this new phase.  We will be navigating this new world together, and hope we are accepted with open arms.  Kemett lights up a room with his hugs and smiles, and hope that this continues for years to come.

Next year Kemett will go 5 days a week, which for a working mom will be helpful, but I will miss our Fridays where we didn’t have to rush anywhere.  We are going to enjoy our summer because next year I will see less of my sweet Kemett.  I do know that he will be in good hands and will be learning and growing everyday.

We are so very proud of the boy he is becoming.  He is thoughtful, kind, loving, compassionate, a feminist, and smart!

Thank you for following us on our journey and for your support!  Please let us know if you have any questions.

Love,

The Demands

 

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PWS Awareness Month- Day 18

Hi Everyone,

Today we have a guest blogger!  My best friend, Ashley, has agreed to write a piece about knowing us, our family and PWS.  Also, she’s a talented photographer- so if you are in Austin or Denver and looking for someone check her page out here.  Thanks, Ashley!

As always, let us know if you have any questions!

Love,

The Demands


Hello everyone! I am so excited and honored to be a part of the Demand’s world and to get to write a blog post. I am going to talk about my perspective in relating to the Demands, what I they have taught me, and some simple actions that are supportive.

Here’s a little background on our friendship: Melissa and Andrew basically handed me my husband and kids. Melissa and I become friends in social work graduate school while she was dating Andrew and I picked my husband out from Andrew’s facebook page for a date. Eight years later Dustin and I have two kids, live back in Austin, and get to hang out with Kemett on the reg.  See how cool the Demand’s are to be around? You just might get something like a whole life from them.

Melissa and I had our sons within a year of each other and as moms and friends do, we discuss our kids and life with each other. When we catch up, amongst many other things, Melissa talks about what’s going on in her PWS community/world. One conversation that stood out to me was her telling me about a PWS conference. She mentioned that they went out with a group of friends for the evening and told me about the fun and shenanigans they had. I was taken aback; in my head cocktails and laughter aren’t part of a conference centering on your child with a rare disease. Melissa said something along the lines of, special needs parents get together without their kids in a cool city and we aren’t going to go out? We don’t just sit around and cry all the time.

As odd as it sounds, a part of me did think that’s what they did to some extent. Because comparing the birth and beginning of her son’s life to mine fills me with sorrow. Because I can’t imagine reshaping the image I have of my life and kids around something like PWS.  Because I felt like Melissa and I were in this parenting adventure together, but my kid doesn’t have a rare disease and therefore I need to treat her family with kid gloves. Because I feel tired just watching how hard they have to work to keep their child safe and give him as many opportunities as possible.

This is what I hope is the take away from this post; I noticed that those feeling of sorrow for them gets in the way of just being with them and knowing Kemett as more than a kid with PWS. Which is the real tragedy, bc that kid is hella cool. I mean, he wears hats and loves the White Stripes.

Melissa inadvertently helped me see how I was painting her life and family with a big scary PWS brush that blocked out all the other colors of them. I am slowly realizing PWS is a part of their life and Kemett, but like a previous blog post of hers, Kemett is so much more than PWS. I’ve had family and friends ask me about how the Demands are doing, and I may be projecting, but hear a similar undertone in their questions. The unknown is scary and PWS is pretty rare, so Melissa and I text and talk about food safety and play dates. But I also work on remembering and knowing the Demands as who they were, and who they are now. Which can be boiled down to college friends that are part of our parenting village that we’ve caught dancing to Ghostland Observatory alone in their living room.

And I work on seeing Kemett for who he is right now, which is the sweetest little boy with the biggest blue eyes that can chat your ear off.  In some ways he is the same as my son, and in some ways he is different. They both loved Daniel Tiger and playing on swing sets. They both love their little sisters, and they have both driven their moms to tears due to frustration and love.  Having a friendships with the Demand’s has shown me how life moves on, a mother is not going to lay down and stop being because she is faced with an unexpected challenge. When I tell Melissa I don’t know how she does it, she says back what is her option? And she will point out how we all have challenges and have to work hard. She has shown me that to really be their friends, I need to take off the sorrow glasses and kid gloves and ask for their help and sympathetic ears while doing the same for them.  Yah know; just literally act like friends act.

As members of the Demand’s community and as their friends, these are some little things I’ve learned that show support. Asking about how K’s doing in school, what baby Mabel is up to, how Andrew’s swimming is going, what amazing decorating Melissa is doing.  Also, as with any family, they are busy people. So continuing to text to make that play date or date night happen. Or simply share their posts on PWS. They have to go into about every situation educating others on it, so the more the public is aware of it, the easier that load gets for them. And best of all, share your life with them. Melissa and Andrew are great empathizers that love being there for their friends. Plus they have a truck; don’t we all need a friend with a truck? Or is that just us?

Thanks for reading these ramblings and being a part of the Demand’s world. Melissa is always asking for more questions on her posts; please let her know if you’d like examples of their embarrassing college shenanigans, I am more than happy to share some good ones.

 

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The Demands and Chugers

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Photo by Ashley Rachel Photography

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Melissa and Dustin in a cornfield

PWS Awareness Month- Day 17

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 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 have had two instances recently where Kemett has cried for food, or tried to grab his old snack off the counter to eat later in the day.  Both times he was getting sick, but believe me this was scary.  We will buy locks at some point for our fridge, just so everyone is used to it, rather than punishing after the fact once he starts seeking.  To us, Kemett’s safety is our number one concern.

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 knows more about food and talks about it, or plays it, occasionally, but it’s still not his focus.

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 a past 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.  

 

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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