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.


The Demands




Kemett’s in School

Hi Everyone,

Well as most of you have seen, Kemett started school on Monday!  First off, I cannot believe he is old enough to be in school.  Time really does fly by.  Second, I have already had some questions about how it will all work especially around food, so I thought I should share in a blog post.

Here is the question: How do you handle food at school? Do you just send him his own snack/ lunch?

I was so happy last year when we found a school for Kemett that sounded like they would be accommodating, he was familiar with and knew some kids from his class.  They told me that I could come in and do a 1 hour training for the teachers and staff on PWS and Kemett.  I will say that I was anxious all summer thinking of all the things that could go wrong with his first week.  I been the primary caregiver for Kemett for 2 years.  I am in control of his food.  Letting go and trusting others has been very difficult for me his entire life.

Last week, I went in and did my presentation.  It was a combination of health concerns for Kemett and how to best encourage learning and growth.  I made a handout, thanks for some awesome moms who went before me, and a power point.  It’s a little worrisome when you make a 4 page handout about health concerns for your child, but it is so important.

My presentation went well and the staff had great questions and were all so receptive!  They discussed throughout ways to make the classroom more accommodating for Kemett, as well as how to create a safe environment for him.  Sitting in that meeting, I felt relieved.  I knew I had chosen the right place for Kemett.

I met with the teacher one on one after that.  Here are the food related issues we discussed:

  • Curriculum: We discussed curriculum and food in more detail.  Week two is apples.  When I saw that in the teacher’s email, I teared up.  I started questioning my decision to let Kemett go to school so young.  Once we talked, she made it clear she would do whatever we wanted to do.  In the past she has baked apples with the kids.  They will not be baking apples this year, not even interacting with them.  In fact, throughout the year, he will not be doing crafts or activities that involve him touching food.  This was my biggest fear all summer- what would the teacher say when I asked them to do this.  And it’s really not even about PWS.  Kemett’s allergies are just as scary if not scarier.  If he gets a hold of something he allergic to we don’t know what will happen.
  • Holidays and Birthday’s: I am so excited to say that our teacher talked with the director and they agreed that all holiday’s such as Halloween and Valentine’s day will only include non-food treat items passed out!  All the parents seemed just fine that their 2 year old wasn’t being sent home with candy.  On birthday’s we requested that parents provide a fruit snack instead of a dessert.
  • Snack and Lunch: The school provides snacks and parents provide lunches.  I will be providing all meals for Kemett.  They have a no sharing policy and the teacher sits with the kids at their table for all meals.  They are a peanut free facility but his class even talked about doing just sunbutter since he is allergic to almond butter.  They also discussed placement of trashcans and where lunch boxes/sippy cups were located to make sure Kemett did not have access.

Outside of food, there are medical concerns that we discussed in detail in May.  Now that Kemett is walking, they will just have to pay more attention to him as he can be clumsy and lose his balance easily.

Thank you for your support and love for our family and for Kemett!  Remember our walk is coming up on October 10th!   You can donate here: One SMALL Step Walk.  Also, I will do a 2 year post soon!


The Demands

First Day of Pre-School!

First Day of Pre-School!

Can't wait for School!

Can’t wait for School!

After School

After School