Summer School and Evie's G-Tube Update

When I was growing up, I thought summer school was only for children who didn't do well academically.  Now that I have a child with special needs, I'm learning that summer school can mean very different things.

Evie just finished her second day of summer school.  To her, we go in a different entrance and there are new teachers and new classmates.  But as soon as she saw her new classroom, she went right for the blocks, and I knew she would be just fine.  

If a child has an IEP, it's not an automatic thing that they will qualify to have Extended School Year (ESY) services.  It has to be apparent that the child will regress without school, or take a long time to relearn certain skills due to lack of school during the summer.  Some kids qualify for therapy sessions during the summer, and others, like Evie qualify to go to the summer school program for 1 month.  There was no question that Evie qualified for ESY when the IEP was first written--I didn't have to fight for it at all.  She proved we were right when February vacation came and she decided that she forgot how to swallow her food.  Here's a good explanation of who qualifies: https://www.understood.org/en/friends-feelings/child-social-situations/summer-camp-summer-school/extended-school-year-services-what-you-need-to-know

Evie goes to preschool on Mondays through Thursdays with 3 and 4 year olds from 9 am to 12 pm in the classroom next to her regular classroom.  She has a different teacher and a different 1:1 aide, both of whom are very nice, and still send home a note at the end of the day.  This summer teacher has 30 years of experience with g-tubes, which really impressed me.   The school day is very similar to the rest of the school year, and she still gets her PT, OT, and Speech.  
Sitting in circle time with Evie's 1:1 aide
What else has Evie been up to?
Evie has been making huge strides in her feeding.  She starts her home feeding therapy with some play time.  On a given day, I set out Nutella, jello, hummus, Bamba snacks, and veggie sticks, and the therapist encourages Evie to touch any of it without being asked to eat it.  The word "eat" makes her very defensive because she doesn't feel safe about having food in her mouth.  Over the past month, Evie has started becoming more adventurous in touching food, and tonight was the best yet.  She dug her hands into the Nutella and smeared it all over her hands and arms and face.  It was awesome. We couldn't cheer because that makes Evie cry, but we jumped up and down inside. 

If you're interested in what spoon and bowl we use, here they are: 


I have about 5 different kinds of spoons--the maroon spoon, the one that looks like a leaf, the shorter spoons, the Kizingo spoons, and flatter Munchkin spoons.  Ironically, the first type of spoons I got were the ones that we went back to, because Evie has a smaller surface area that needs to be rotated to get into her mouth.

These bowls are really helpful for us because I prep food for Evie by taking 2 cubes of frozen blended food, 1 oz of Noosa yogurt, 1 scoop of Duocal, and 1 teaspoon of avocado oil and cover it to store and thaw in the fridge for the next day.

I've been asked several times if Evie still has her feeding tube.  The answer is yes.  Ask me when she's 5 if she still has her feeding tube.  My answer may change by then. But this is a long journey, as you can see, since we are just asking her to touch food and she is hesitating.   But we are making progress!!  In today's session, Evie put the spoon with her blended puree in her mouth, rotated the spoon to get her lips around it, and ate a solid bite all by herself!  Up until today, she just went through the motions of touching the spoon to her mouth, but she actually has started to understand that she needs to close her lips over the spoon to get the food.  Her reward is usually Mommy making animal noises as I read the "I Can Roar" book by Arthur Ashe.  


Nutella all up in here (Mommy wanted to eat Evie)
 We are excited to see what the rest of the summer can bring.  I would love for Evie to go back to school in the fall with feeling more confident in standing on her own. That would be HUGE!  In the meantime, Evie has been enjoying excursions like the playground and Jump On In, an indoor inflatable park.

Wishing everyone a happy summer!  Buh-bye from Evie (she is actually saying this verbally now!)! 



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