PWS Awareness Month- Day 30

Hi Everyone,

Thank you all for joining us so far this month!  Today I wanted to quickly talk about Kemett’s first clinical trial.  We participated in PRETEND- through Case Western University.

Kids with PWS often have a hard time understanding pretend and fantasy place, socializing with peers,   Kids with UPD (the subtype Kemett has) can often have autistic like characteristics.  They aren’t sure if kids should be dual diagnosed yet, or if there are other reasons causing these characteristics- like low muscle tone, slower processing, etc.

We were lucky to get picked for the trial, and for 8 plus weeks, I met weekly on a call with a researcher and learned different aspects of pretend play and socialization.  I then had homework and worked with Kemett throughout the week on different things.

The first thing we started with was learning how to pretend play and building a story.  Kemett has some familiarity with toys and knowing they can become other objects, so we weren’t starting from scratch.  We sit down daily or more than once daily, and play.  I start by picking a story line (which has to be different every time we play because we are trying to help him be creative and learn new stories, and learn to make up new stories), then we pick characters, and I ask him what happens first, then next, etc.  When we are done I show him that we had a beginning, middle, and end to the story.  Then he picks a story and we play it out.

Our next step was to try this with a therapist or another adult, and then on to school.  His speech therapist went to school 1-2 times a week and worked on this with him.  By the end of the school year, he was playing other kids stories they were making up.

Play is super important for kids because it helps them learn many things in socialization and it gives them a safe space to play out emotions, etc.  So you learn to greet others, take turns, what emotions are, non verbal communication, initiating play with peers or in groups, having a conversation, characterizing things (what things are red, what makes noise), putting things in chronological order, etc.

We also worked on behavior some- so progressive muscle relaxation when upset, deep breaths (which we were already doing), and planned ignoring (so when he gets upset, I let him know that I will talk to him when he is calm).  I will say that Kemett’s behaviors are typical 3 year old at this point and getting better every day.  The planned ignoring works wonders!

We worked on a spreadsheet with goals and markers for things we need to continue to work on- initiating play with peers, with groups, reciprocal play, conversation, emotions, non verbal communication.   This summer I will work on initiating play with peers and conversation, and then in the fall move to the others.

With group play, we will start at home going over all the steps he needs to take to play with friends alone or in a group.  So, how do we greet them, ask them to play, ask them what they are playing, turn taking, etc.  We will start with me modeling it, then role playing, then with stuffed animals, then probably a therapist, and then play date with familiar friends, etc.

I will say this is a lot of work, but we have seen so much improvement this year with someone facilitating this play and social activity with him.  Kemett is such a social kid, and what I discussed with his researcher and therapists, is what is holding him back at this age is that kids are faster than him, both physically and with processing.  They may have moved to a new topic and Kemett is still on the last.  So we are working on these things.  Also, kids his age aren’t as patient to sit with him and play.  We have found that kids even a year or two older are more likely to be patient with him and play.

Over the weekend we went to a playground and he played with a little girl for a long time.  She was probably around 5 years old.  It was just so nice to see him socializing with kids he doesn’t know.

We are so lucky that we were able to participate in this study.  We are lucky there are clinical trials going on in our community, with not just medical intervention but also clinical.  Socialization at a young age has been proven to be incredibly important for our kids as they get older.  We learned so much during this time period, and Kemett has grown so much.  We cannot wait to continue working with him and helping him build his skills! I know that was a lot, so please let us know if you have questions!


The Demands

Kemett on his last day of school- not feeling great.


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