PWS Awareness Month- Day 11

Hey Everyone,

Today we will be talking about school!  I cannot believe Kemett only has 2 weeks left, and then he is off for the summer.

So our last post before May was in August on his first day of school.  So much has changed since then, and Kemett has grown up!  We have been so lucky to be at a school where they care about Kemett and his well being.  Here are some updates:

  • Food: This was one of my biggest fears going into the school year- food at holidays, in the classroom, etc.  I am so happy to say that the school has made accommodations for Kemett.  There have been NO food activities in the classroom (most of this is because of his food allergies), NO food for holidays or birthdays, and NO food toys in the classroom.  If they are going to do an activity, for example watching food coloring go up in a stalk of celery, his teacher always texts me first and asks if this is ok.  I know that we may not have this forever, but when he is little and doesn’t fully understand he has a special tummy, it makes me feel good that the school is being inclusive of him!
  • Snacks/Lunch: I provide Kemett’s snack and lunch each day.  The teachers make sure that no one is sharing at the table and no one touches each other’s food.  We try hard to teach Kemett this at home and when we are out, and I think he has done pretty good about it this year! Kemett also doesn’t notice that he has something different than his peers for snack time.  And I think there has only been one time at school where he talked about another child’s lunch.
  • Playground:  At the beginning it was hard for Kemett to play on the playground with his friends due to his low tone and just beginning to walk.  He was falling a lot and the school was, of course, worried about his safety.  He was tripping a lot inside and outside.  I am happy to report that Kemett is now going on the entire playground all by himself and is not tripping as much.  We have also been in open communication with the school, so if there is an issue, we talk about it and come home and work on it.  As soon as we knew Kemett was tripping and getting out of his chair during snack and lunch time, I started having him sit at a tiny table at home and eat his snack and lunch.  Soon he was the kid sitting the longest at the table!  We work hard in therapies to make him safe and stronger for the playground and that has paid off as well!  (more on therapies this week).
  • Speech: Kemett was not speaking when he started school in August.  He had a couple of words but mainly signs.  In the fall, he had a verbal explosion that has not stopped since!  I am so happy to say that he is talking up a storm and keeping up with his peers.  (speech blog post later this week).
  • Social Interaction: Kids with PWS sometimes have issues with social interaction, but not our Kemett.  He is the friendliest kid around.  I think he might win the Mr. Congeniality award at school.  He is friends with everyone, especially all the older girls, and loves school.  This makes me so happy.  When he was born, and we got the diagnosis, I always wondered if he make friends.  Luckily, 2 year olds don’t see how we are different, instead they love.  It’s a lesson I wish we all could keep, especially as Kemett gets older and kids get meaner.  But right now, I’m going to cherish how sweet people are to him and how he does have friends!

Next Year:

This has been a constant source of worry for me this past year.  At three, kids with disabilities often enter PPCD program (Preschool Programs for Children with Disabilities).  We weren’t sure this is what we wanted for Kemett.  Also, in our school district, kids are not mixed in with typical kids.  We definitely want Kemett to keep getting pushed, and he has done so well at his current school.  We talked to all of his therapists, and Dr. Miller, who all agreed that Kemett should stay where he is and not move to a PPCD program.  We met with the school earlier in the year and with one of the 3’s teachers.  We brought in letter’s from all his therapists stating where he was at and their recommendations, as well as something from Dr. Miller.  They did question why we were not putting him in PPCD, and when we explained our reasoning, they seemed to understand why we would keep him at his current school.  We talked about next year’s expectations and curriculum, and what we needed to work with Kemett on.  I will talk about some of that below.  By the end, they all agreed that Kemett should get moved up with his peers.

  • Safety– They are concerned about Kemett falling still, but after the meeting we had, his current teacher has worked with him more, and I am happy to report that Kemett is doing great on his own!  It is something we continue to work on in occupational therapy (more this week).
  • Independence:  So Kemett will need to carry his lunchbox by himself, hang his backpack, unpack it, etc.  So his current teacher started having him do everything alone.  He and his therapists are so happy about this!  We knew he could do it and is successful!  At home we are working on this as well.  He puts his clothes in the hamper, dishes in the kitchen, etc.  We will start working on dressing soon as well.
  • Potty Training:  This is the big one- he must be potty trained to start school next year.  I know he is close to being ready, and all his therapists and Dr. Miller think he will be.  We’ve tried a couple of times with the bootcamp and I was never so excited to see him potty in the potty!  I think once summer comes we will concentrate more on this.  He knows what is happening and will tell me, “I pooped, mama” or “I peed.”  Like I said, so close! I do not want something like this to hold him back!
  • Cognitive: He works harder than anyone I know, and I work with him as much as I can (also wanting him to have a normal kid life too) because I know he is so smart and can succeed.  Am I biased?  Of course, he’s my kid, but I am not the only person who thinks he is smart.  His therapists and teacher all think he is smart and with his peers.  I think sometimes it takes him longer to process things when he’s talking or doing a project, but that is normal for kids with PWS.  It doesn’t mean they are any less, it just means they need more time.

What I have learned this year is that communication is key!  Andrew and I are both very open about Kemett, and maybe to a fault.  I worry that he gets pegged as the special needs kid because of it sometimes, but his medical needs are so scary that I would be scared not to tell them what is going on.   Communication has helped us with his school as they learned about Kemett and how to work with him.  I feel so good at this point in the year and feel like communication, then us working with Kemett, has helped him be successful.  I also realized that I will be his voice for many years to come and will not stop advocating to make sure he is given the same opportunities that kids his age are given.

Thank you to his amazing school for all you do to make Kemett feel included with his peers!  Thank you to everyone who is supporting us on this journey!  Please let us know if you have any questions.

The rest of the week will focus on Kemett’s therapies, so stay tuned!  Below are some adorable school photos:


The Demands


Kemett Painting!


The rare nap!


Kemett reading!


Bike day at school!


Go Texan Day at school!


Kemett’s first school photo!


4 thoughts on “PWS Awareness Month- Day 11

  1. Thank goodness for a loving, understanding school. He is getting a great foundation. As always, Melissa and Andrew, you two are doing great and Kemett is a lucky little boy to have the care he gets. Love y’all!

  2. This was such a great read. I think it gave me the most rich idea of who Kemett is, how he moves through life, and the ways you get to bridge/build skill sets together. LOVE his first school photo! Thank you for this post.

    • Thank you! It was one of my easiest to write! I hope to have more coming about about Kemett so people really get to know him and what life is like for him! I’m so glad you enjoyed it! If there are specific things you’d like to hear let me know! Want to make sure people are getting what they want this month too!!

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