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.


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!


The Demands


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