PWS Awareness Month- Day 31

Hi Everyone,

Thank you!  Today is the last day of Prader-Willi Awareness Month.  I can’t believe we made it though.  I could not have done this last year, as it was not easy for us to open up to everyone like this.  We often keep our lives pretty private.  But this year we felt it was so important to educate and bring awareness.  We want people to feel comfortable to be around us and ask questions.

Thank you for reading our blog.  We are shocked by the number of people who have viewed and read our blog this month!  Thank you for asking questions!  At first I thought we would never get a question, and then they started rolling in.  We have heard from so many people, and many we haven’t talked to in a long time.  That means so much to us! Thank you for engaging in the conversation!  This is exactly what we wanted.  Thank you for sharing our blog and bringing awareness to your friends.

We also want to thank all of our family and friends!  You all have done so much over the past 21 months to support us unconditionally along this path.  You all love Kemett as if he were your own.  You have changed your diets and adapted parties to include Kemett.  You have cheered Kemett on and donated to support research.  You have stood by our sides and not abandoned us because life got harder.   My heart is running over with happiness at how you all have made sure that we feel comfortable and that Kemett is treated typically.  It is overwhelming and beautiful.  I know I don’t always do a great job thanking you all.  I just want all of you to know how we feel because we can’t always do as much in return.  The amazing thing is that you all keep helping us and supporting us despite that.

Please do not stop asking questions!  And we will continue blogging (just not everyday).

Thank you!

Love,

The Demands

 

PWS Awareness Month- Day 30

Hi Everyone,

I have had people ask over the month for a “How we can help” list.  One friend put it in a nice way, “How to be a good friend to a family with a child with PWS” (ok it had another name but I had to adapt it.)  So here we go:

  1. Call, text, email, facebook message: It is always appreciated to hear from friends just asking how we are doing- both about Kemett and just about ourselves.  Sometimes we may not realize we haven’t reached out in a while.  It is a wonderful feeling to catch up with a friend, even if its a few minutes.
  2. Ask Questions: I hope what you have figured out from this month is that Andrew and I are not afraid of questions about Kemett.  We’d rather you ask a question!
  3. Give us a heads up:  If you are going to have a party, just let us know the food situation and timing of things.  We just would hate to show up and be thrown off (although we are good at being flexible when needed).
  4. Be inclusive:  When possible, we appreciate people making an effort to be inclusive of Kemett.  On the same hand, please let us know how we can be inclusive of your family.  It’s not all about us!
  5. Share blog posts and facebook posts: The only way we can educate is by people sharing information on PWS, research, your point of view, or our family.
  6. Walk with us: This could be in person or virtually!  Our walk will be on October 10th, and we hope that you will join us (it’s free to attend) and support Kemett and his friends!
  7. Donate: Your time, services, in kind items or financially to our One Small Step Walk!
  8. Never feed Kemett– We will bring food for Kemett or know what you have before we come.  Since Kemett’s diet is so strict, we ask that you never offer Kemett food outside of what we have for him and his feeding times.
  9. Please follow our “rules”– These were in another post, but we would be happy to resend them if you just ask!

 

Thank you so much for all of your support!

Love,
The Demands

 

The Aquafamily

 

PWS Awareness Month- Day 29

Hi Everyone,

We are so excited to announce this year’s One Small Step Walk on October 10!  The flyer is below with all of the information!

Last year was our first year to put on a One Small Step Walk and it turned out to be such a success!  We were overwhelmed by the love and support we received.  We raised over $117,000 just at the Dripping Springs walk thanks to our amazing PWS families raising money and donors.  In the end, we had raised the most money in the world, which is why we are hosting this year’s FPWR conference in Austin.

We are focusing this month on education and awareness, not on fundraising.  However, we have had people ask where they can donate to support Kemett.  We will start publicizing more at the end of the summer.  We would also love if you want to fundraise and set up your own page.  Contact me directly if you are interested!  Please let us know if there are other ways you can help: in kind donations, services, attending, etc!

We have set up our One Small Step fundraising page if anyone is interested in donating now.

We are so excited to get all of our friends and family together in support of Kemett and research!

Stay tuned this weekend for our last two blog posts!  Tomorrow we will talk about how you can help and support us!

Love,

The Demands

 

One Small Step Flyer 2015 Final 1

Andrew, Kemett and I!

Andrew, Kemett and I!

Group shot!  Thank you everyone!

Group shot! Thank you everyone!

The Frederick's!

The Frederick’s!

Demand Family

Demand Family

 

PWS Awareness Month- Day 28

Hi Everyone,

What I hope you took from yesterday is that as a community we are making progress!  We have so much hope for Kemett’s future.  I also hope you see from all of our posts this month so far that we are not discouraged or sad.  We have chosen to look at Kemett’s strengths and in his abilities!  One of my grandpa’s favorite quotes was, “Every dark cloud has a silver lining.”  And it’s true.  It may be hard to see it when you are in the storm or even right after, but when the storm starts to clear a silver lining will always appear.

All parents who have kids have hopes and dreams for them.  They think about what their life will look like, what they will do and who they will become.  I’ve learned over the years that we don’t know what life has planned for us so we need to be open.  Just because Kemett was in NICU, received a diagnosis and is somewhat delayed developmentally does not mean that we don’t have these same hopes and dreams for him.  I’m sure it is hard for some parents to come to terms with the diagnosis and are in a state of grief or denial longer.  For us, we moved quickly out of that stage and into what we can do to make Kemett’s life the best it can be.

As I’ve said before, it was hard at first to see Kemett for the baby he was.  But soon, had a doctor shake some sense in me.  I soon started to focus on Kemett as a baby first and later diagnosis second.   Andrew talked earlier this week about the doctor who told us Kemett wouldn’t be a track start (prediagnosis), and at the time it did not phase us.  Those of you who know us well understand.  But just because he might not be the star athlete does not mean his life is over.  Kemett will have his own hopes and dreams.  We will do everything we can to help him achieve them.  We will treat him like we would a typical child.  And if Kemett does want to run track, we will figure it out.

We have hope that through research and clinical trials, we will have treatments that will allow Kemett to not feel an insatiable hunger.  We hope we will find a treatment that will allow Kemett to be independent- drive a car, go off to college, get a job, find a partner or whatever he wants to do!

We are not going to set limits for Kemett.  I won’t say this has been easy from the start.  Like I’ve said before, I struggle with what other families think, but I am learning that if I want Kemett to thrive then I will make sure he has the same opportunities and interacts with typical kids.

It also helps that we have met such an amazing PWS family!  We have friends all over the country now who have the same passion we have for our kids and for raising money.  It helps keep us motivated and pushed to do more!  This community is doing great things and our kids are thriving because of it.

I have hope also because I see how well all of these kids are doing!  Their parents are pushing them and letting them live their dreams.  It is inspiring.

We hope that Kemett will “LIVE LIFE FULL!”

Thank you as always for following our journey!  Let us know if you have any more questions!

Love,

The Demands

Kemett having fun at the NICU reunion!

Kemett having fun at the NICU reunion!

 

PWS Awareness Month- Day 27

Hi Everyone,

After Kemett was born and we received his diagnosis, we knew we wanted to find a way to make a difference.  With my background, I also hoped I could fundraise and make a difference.  Eventually, we found Foundation for Prader-Willi Research.  They have a fundraising platform, One Small Step, for families.  We will have a post about this later in the week.

Andrew and I needed to find other families that had hope for the future and felt the same way we do.  FPWR has provided this for us!  We have met amazing families through them.  We attended their annual conference this past November in Long Island, and cannot wait to host this years conference in Austin, TX!

The Foundation for Prader-Willi Research was established in 2003 by a small group of parents who saw the need to foster research that would help their children with Prader-Willi syndrome lead more healthy and fulfilling lives. Today, FPWR is composed of hundreds of parents, family members, researchers, and others who are interested in addressing the many issues related to PWS, including childhood obesity, developmental delay, psychiatric disorders, and autism spectrum disorders.

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research. High-quality research will lead to more effective treatments and an eventual cure for this disorder. By working together, we intend to free our loved ones from the burdens of PWS, allowing them to lead full and independent lives.

To date FPWR has raised over $4.5 million for research.  Every year they have been able to raise more than the last year.  All of this means that more research and clinical trials can be funded!  The more money put towards this, the faster answers and treatments will happen.

People have asked if there is anything to stop the hunger.  At the moment there are no medications that Kemett could take to relieve this symptom.  But everyday, we are getting closer and closer.

Click Here to learn more about clinical trials and research.  I won’t go into details on here because it is complicated and a lot of it goes over my head.

You can also follow FPWR on Facebook.  Here you will get great updates as new research comes out!  I will also do a better job this next year to share exciting news!

I just know that we are getting close, and we will not stop fighting!

Thank you for following our journey and for asking questions!  Only a few more days left, so stick with us!

Love,

The Demands

 

 

PWS Awareness Month- Day 26

Hi Everyone, 

So people keep asking about Dad’s perspective.  I find this to be a hard job because my wife is covering so many different aspects in the blog, but I will give it a try.

 First off, one thing I know is that my wife is amazing. She rises to the challenges of Kemett everyday and does a wonderful job with him.  She is a determined individual that is so strong. There is a lot of talk about higher divorce rates of couples that are parents of special needs children. Although I know our life may be more challenging, so far I feel we have become a stronger team and my wife inspires me every day. Kemett means the world to both of us but we also mean the world to each other and I think these challenges have helped keep that in focus.

I was devastated when I first knew something was wrong with my son.  Melissa had an emergency C section and was given some powerful drugs. She was out of it when I first knew something was wrong with Kemett. It was very lonely not being able to tell Melissa. That feeling went away very quickly when she came through. We were always a team but through this experience I definitely learned what it means to lean on someone and be there for them. 

While we were in NICU, we were told a variety of possibilities of diagnoses and futures for our son.  It was a wild ride emotionally but we just tried to focus on Kemett. We always joke about the one doctor who informed us that our son would not be a Track Star one day. Anyone who has ever seen me run knows that with almost certainty that none of our children will be track stars. In NICU we just tried to do everything the nurses were doing for him so we could get him home. There is much to learn for a first time parent and with Kemett’s special needs there was even more. Our time in NICU helped us prepare. The nurses were amazing and we got fist hand instructions on many extra things that Kemett would need.  

At home, life became a lot closer to what it is today. Kemett has a multitude of therapies a week and sees a multitude of doctors. I rarely get to see therapy, or go to the numerous doctor’s appointments. I know it’s not easy for Melissa and I do wish I could be there more often. I do my best to give Melissa breaks when I am home. Melissa shows me many of the therapies he does and I try to work with him when I get a chance. Like any kid he is a lot of work and I am lucky to have an amazing partner in this all.  

Kemett is amazing. The kid is so happy and smart, it is cliché but he is the best thing to ever happen to me. He loves to be held upside down and he loves to drum on my belly (guy things). We spend a lot of time reading and playing. We walk all over the house, myself hunched over, Kemett holding my hand.  It took me a while to get here, but every parent’s job is to give their child the best life they can and although my job might not look exactly like everyone else’s, it is still the same. There is not a day I don’t feel broken in half by his diagnoses, but there is also not a day that my heart his not overflowing with love for him. The easiest cure for sadness for me is just to go pick him up because it is impossible to interact with him and stay sad. He is full of love and smiles, and although I would take PWS away from him if I could, I wouldn’t change him for the world.   

From my perspective my Son and Wife are amazing. My family is awesome.

Love,

Andrew

At Comicpalooza

Aquaman and Aqualad

PWS Awareness Month- Day 24

Hi Everyone,

Today we are going to talk about social work and school.

Social Work

So as some of you know, about 8 years ago, I went back to school and got my Masters of Social Work in Community and Administrative Leadership at The University of Texas.  In school you have to do a generalist field placement and do case management, therapy and administrative social work.  You also have to take classes on this.  My first job out was actually as a case manager at a local non-profit here in Austin.  I quickly transitioned into a Development Director role which is where I had decided I wanted to focus my attention.  For the 5 years following that, I had many roles in development- development associate, faith coordinator, development director and special events coordinator.  The last is where I decided that I fit best.  I love raising money and fundraising, but especially love planning events, working with committees, and being organized! (more on events next week- OSS!)

I don’t have experience as a medical or hospital social worker.  A day or so after Kemett was born, the social workers started visiting us.  The case manager in NICU started meeting with us.  I’d say no matter what your background is, when something becomes personal it is a different situation.  We were overwhelmed and scared.  But at the same time, I felt confident because I understood their role, where they were coming from and how they were trying to help.  I wasn’t going to resist them.

The case manager in NICU was amazing and so was our resident.  They both made sure that before we left, we were set up with every appointment Kemett needed.  We had been trained on his feeding pump, we were set up with ECI and home health and every doctor we had to see.  They understood our insurance and Kemett’s needs.  It took a load of our shoulders to have this support in this new world.

Once released, the doctors appointments started and evaluations.  We immediately met our Home Health case manager.  We still work with her to this day.  She is amazing and is always there to help, push insurance and guide us.  At the beginning we saw her more often, now she and I check in on the phone every once in a while.  She knows that I know what I am doing and feels comfortable leaving a lot in my hands.  She knows I am a social worker.

We also had a case manager for a bit with ECI.  She was also helpful, and after weekly calls and visits, she finally realized that we weren’t the family that needed to be micromanaged.  I don’t miss appointments for Kemett, we pay bills on time and I know how to do the research to get what we need.

I have learned so much about this new world.  I, for the most part, understand our insurance plans.  At the beginning I was on the phone with them multiple times a week.  Now I call when I have a question or need help.  I understand doctors billing.  I sort of understand medical equipment, although, we are in a battle right now for our pulse ox.

I also made binders immediately with sections for insurance, bills, each doctor, therapist, etc.  It was the only way I could stay sane while navigating this new world.  I still keep binders for Kemett- now I’m on to binder two and soon to be three.

I feel like my background has prepared me for Kemett in a way.

For those who aren’t social workers, it is great that there are such amazing case managers out there who can help you every step of the way.  These systems are hard to navigate and are often not patient or user friendly.  I can say that I have yelled at a few people over the phone (not my finest moments).  For families with PWS, there are resources as well and groups that can help such as PWSA and their local chapters.  Even the individual doctors and nurses do their part to guide families.  Families are also good about helping each other.  It is a rare disease, so we need to have each other’s back.

I also love that almost everyone around us goes from a strengths based perspective.  They are encouraged by Kemett’s strengths and work from there.  Of course he has areas for improvement but they aren’t looked at weaknesses.

And who doesn’t like an evidence based approach in life.  All of our doctors and researchers are amazing.  They are smart and in the top of their field.  We are lucky to have them in our lives.

I also think that my background helped prepare me for processing feelings.  It’s not an easy thing to hear- your son has a rare syndrome.  You need to talk to people (or at least I do).  I have resources for that as well.  I have made sure that I don’t keep things bottled in.  It also helps that my best friend is also a social worker, but clinical.


School

I had a couple of questions on this topic, answered below.  My answers won’t be specific because this is all new to us!  We are excited because Kemett will be entering preschool in the fall.  Our church has a day school, so he will be going 2 days a week.  It is going to be a good placement- he is used to the classroom (has had MOPS there and church childcare) and he will know a few kids in his class already.  The school is letting me come in August to do a 1 hour training for the entire staff!  And they’ve already let me know they are going to make accommodations for Kemett.   We know many PWS families who put their 2 year olds into preschool and they thrived.  We cannot wait to see Kemett grow next year!

  1.  My question for you is: are you guys going to have Kemett evaluated for services at age 3? What are your hopes for him in regards to his placement in the public school setting (if you go that route!)  Kemett will be 3 next August.  We plan on having him evaluated for PPCD (preschool programs for children with disabilities) and see what they say.  I really haven’t thought as far as that yet (I know it will be here before I know it!).  I want a placement where Kemett can continue to grow especially in areas where he might potentially need work- handwriting, speaking, and adjusting to school life, etc.  I also want a place where they are inclusive and understanding of Prader-Willi Syndrome and Kemett.  I am scared of public school mainly because of food- for PWS and allergies.  I know it might be a fight.  I just want Kemett to thrive, grow, and be treated with respect, like a typical child would.  
  1. Is his school district preparing able to offer services?  We are in Dripping Springs ISD and they do have a PPCD program at the elementary school Kemett will attend.  We chose this school district because it is highly rated in our area.  We have heard good things about the program, and only time will tell what we will decide to do.  3. 
  1. Not sure if you addressed this but what about school? I know how much we as parents WANT to protect our children, but you and Andrew MUST protect and need to control Kemett’s environment. So what does school “look like” for Kemett.  At this point, I only know what school might look like next year for Kemett.  The biggest thing is that Kemett doesn’t have access to food outside of the food we send with him for snacks and meals.  No one can leave food accessible to Kemett.  I will be honest, school makes me nervous.  I’m glad we are starting with 2 days a week!  That will help me get used to it all.  

Thank you to everyone who has asked questions!  Only one more week to go!

Love,

The Demands

PWS Awareness Month- Day 23

Hi Everyone,

Today we are talking about the future.  This topic is not easy to discuss.  First I will talk about wills and trusts and then I will talk about our future.

Special Needs Trusts

After Kemett was born, we decided we wanted to have a will in place in case something happened to us.  We wanted him to have a family member to go to that knew he was coming and was prepared.  We did and feel good about our decision.

You also cannot save money for someone with special needs in their name.  If they have any assets in their name they won’t qualify for government funding when they turn 18.  So, you have to put money into a special needs trust.  This is hard because what if there are medical breakthroughs and Kemett can go to college.  We hope that we will figure out what we need to do.  Luckily, Andrew is in finance.

Our Future

I’m sure every new married couple or even new parents think about their future.  They dream of what life will be like when they are empty nesters.  They dream about the days when they can retire.  Where will they live?  What activities or hobbies will they do?  Will they travel?  Where will their kids live?  Andrew and I talked about those same things.  I’m sure everyone does.

Then we got Kemett’s diagnosis.  Our geneticist told us we would probably outlive Kemett.  That made us think about the topic above.  But the average life span of an individual with PWS is shorter (although that is often from PWS complications or from being obese).  I don’t want to think about that day.  So we won’t, we will enjoy today.

Without any changes in research or new medications, Kemett will not be able to live independently.  He would have two options- live with us or group home.  We don’t know what Kemett would like to do.  We hear how some young adults just want some independence away from their parents.  Who doesn’t!  But he will always have a place in our house for him.

Of course we will do anything for Kemett, but those dreams of being empty nesters or retiring are harder to think about.  Don’t worry though, Andrew and I talk about it a lot as if it might happen.  But they may never come true.  One day we will have to come to terms with Andrew and I’s future and Kemett’s.  We don’t know what will happen in 16 years.  And we love Kemett more than anything and would do anything for him.  There’s just a part of me that wants that special time with Andrew when we are older.

But you know what, we don’t know what life will bring, so we need to at least enjoy today.  Not sure what else to write, I’ve heard others put it in much better ways.

Please let us know if you have questions.

Love,

The Demands

Ybor City

Ybor City

PWS Awareness Month- Day 22

Hi Everyone,

Today we are going to talk about how Kemett is awesome!  I’m sure you all know this already but I wanted to put a face on all of this.  Kemett is a kid with Prader-Willi Syndrome but it doesn’t define who he is inside.

If you’ve met Kemett you will know that he is a sweet, loving and social toddler.  He loves going out because he can tell everyone hi!  He will say hi or make noises until you pay attention to him.  He also loves hugs with his family.

  • Books– Kemett could read books all day long.  He will grab a few books off the shelf and come sit in my lap for me to read to him.  I’ve had to hide books before that he wants me to read 20+ times in a row!
  • Music– This one makes me happy.  He is always asking for music- whether it is a record, radio or one of us singing to him.  As many of you know, Andrew and I are huge music fans, so we try to play music we love for Kemett.
  • Hats– Kemett always asks for a hat to wear, which makes my heart smile because I love hats too!
  • Outdoors– He loves to play on the patio in the back at his water table, go for walks and play at the playground.
  • Cousins and friends– Kemett loves his friends and his coustins.  You can tell because his face lights up when he sees just a picture of them.
  • Dolls/Stuffed Animals– He adores his stuffed animals and carries them around.  He hugs them, kisses them and talks to them.
  • Daniel Tiger– We won’t watch TV often when Kemett’s awake.  I’d say once a week we watch either half and episode or a whole episode.  Kemett shreaks when he hears the song come on and sees Daniel Tiger.  It really is so cute.
  • Dogs– Kemett gets so excited when he sees our dogs Kona and Ginger.  He is allergic so we unfortunately he cannot spend time with them.

 

I also wanted to talk about Kemett’s toys today.  After we got the diagnosis, we decided that we did not want any food related books or toys in our house.  Not until we know how Kemett will react to food.  We know of some kids that watch food network because it eases their anxiety.

We make sure that none of the therapists use food or bring food related activities for Kemett.  This is so hard because our lives revolve around food.

We review all books before he reads them or they come into our house.  We aren’t going to buy the Hungry Hungry Caterpillar.  It is hard to find books that don’t have food in them.  But we have and that’s what we focus on for now.

I even skip Daniel Tiger episodes or kid songs that talk about food.

As some of you have seen, Kemett has a play kitchen now.  This was a hard decision that Andrew and I talked about for a long time before we finally got one.  We talked with other parents of kids with PWS.  They told us that they had kitchens because they would rather their child learn at home about it than from preschool.  They also said all classrooms have one and it would help with socialization.  So we got one.  I filled it with plastic bowls, plates, pitchers, etc.  No food at the moment.  And Kemett loves it.  He plays at the sink and stove, stirs things, pours things and plays with his dolls there.  He is pretend playing and I love it.  I even made curtains and bunting to go behind the kitchen.  🙂

We just ask that if anyone is thinking of ever giving Kemett anything, just be thoughtful and make sure it’s not food related.

Thank you for the love and support!

Love,

The Demands

Kemett in his tent with stuffed animals.

Kemett in his tent with stuffed animals.

Listening to music.  Gift from a special friend!

Listening to music. Gift from a special friend!

Kemett and Ginger

Kemett and Ginger

Water table!

Water table!

At the playground.

At the playground.

Kemett washing dishes.

Kemett washing dishes.

My new Kitchen!

My new Kitchen!