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:

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!)! 

Smart girls finish planning

I once bought a book called "Smart Girls Finish Rich" by Suze Orman.  I don't remember at all what it said. And I'm not rich yet, so I'm not sure the book worked.  Once we had Evie, we knew off the bat that we would need to plan ahead financially for her, and more than the typical situation.  We hope she will be able to live on her own as an adult, and hopefully have a job (as a rock star or a model--let a mom dream).  But we need to make sure our little girl will be provided for.

I asked on our awesome Facebook group for local families with kids with Down Syndrome, and got some great recommendations about places to call.

We picked an advisor that was two towns over, but mostly because this financial group is specifically equipped to help families with special needs. One co-founder has a son with Down Syndrome, and the other has a brother with special needs.  Back when they needed help, there wasn't much out there to advise them on how to prepare for their loved one. So now they have written a book.  I got mine autographed. :)

We met with Alexandria, who has a brother with Down Syndrome (and whose father wrote the book). She gets emotional and so happy when she talks about her brother, who is now in his 20's.  She is also very active in the Down Syndrome community and believes in what she is doing.  After we met with her, she presented us with an individualized financial plan for our family from now until Evie is an adult. This timeline goes along Evie's educational career and helps us take the right financial steps along the way.

We were very impressed with the service provided to us.  As a result of our visit, we were able to discuss issues such as life insurance, setting up a will, and the pros and cons of an ABLE account.  She gave us a list of attorneys who were more experienced in helping to set up special needs trusts, and we were able to set up our will as well.

I highly recommend meeting with a special needs financial planner if this applies to you--it helps to give you an overview of what to expect and how you can plan ahead.  I had no idea what to do at all, and Alexandria set us at ease and walked us through what we needed to know. For those of you north of Boston, Shepherd Financial is worth considering!

And now to find someone to childproof my home... just kidding.

Evie's Memoirs: Finishing a half year of Preschool

Hi everyone!
My mommy is too busy to blog, so I have decided to blog for myself today.

I had my last day of preschool last week, and I am enjoying vacation.  I wanted to tell you about my thoughts on preschool since starting in January.

It's awesome.

When I arrive, I meet with Miss Amanda, and she helps me walk in to the classroom. As soon as I walk in, people say hi to me.  My friends C and F are especially good at saying hi to me, and make me feel really special.  In fact, they have been greeting me at the car, ready to hold my backpack and hold the door open for me.  

After I go inside, I put my name on the attendance board and then join in free play.   On Mondays, I do therapy with my speech, PT, and OT therapy ladies, and they usually come into the classroom and hang out with me.  Sometimes we go and walk down the hallway with my walker. I'm getting really good at that.

When I walk down the hallway, the older kids know my name and say hi to me.  I guess they recognize my purple walker.  They cheer me on, which is nice.  I went to the park the other day and a bigger kid said "Hi, Evie!"  My nanny had no idea who she was, but apparently she is impressed with how popular I am.

Do you see the pizza sponge? So cool!!!

I love playground time.  I used to cheer for the other kids going down the slide, but now I go down the slide with some help.  The slide is the best fun ever. I sign "more" at the bottom so that they will help me do it again.  I also like to sit in the playground bus and sing "Wheels on the Bus."  My friend K is great at singing it with me. If you ever see me rotating my hands really quickly, I'm probably singing "Wheels on the Bus" to myself.

Circle time is really fun too. One of our teachers reads a book to us and we sign silly songs and do fun activities like play dough and sandbox and kitchen play.  I can now stand at the kitchen sink myself and do everything the other kids do.  My classmates are so nice.  My friend A wrote a book for me about how we play together, and another friend A always gives me hugs at the end of the day. I like her so much that I now sidle up to her and smile at her to let her know it's ok to hug me.

One of my IEP goals is to stack pegs. I'm getting really good at it!
On our last day, Mommy and Daddy came to see me in a little ceremony.  When I saw them walk into my classroom, I was really confused, but happy to see them. I kept turning around to look for Mommy. We sang a couple songs for our parents, and then we each got a decorated paper bag with some of our best art work inside, and I got a certificate from my teachers.  Everyone clapped for me, and I hid my face in my dress.  I don't like clapping. It scares me.  But I'm getting better at not being scared when people clap. I get over it more quickly now.

Mommy took about 20 pictures of me on the steps. I just wanted to grab the paper sign. 
Now that we are on vacation for 2 weeks before summer school, I miss all the activities and the routine!  But it is nice to sleep in too!

Stay tuned for my travels through 4 weeks of summer school!  I can't wait to get back to school! It's going to be a breeze since I know all the routines now!

Happy 4th, everyone!

Evie's Adventures in Storyland, from a sensory sensitive kid's point of view

Hi Evie fans!  Our first post-pandemic trip was to the  Storyland amusement park in Glen, New Hampshire !  Evie did well with the 2.5 hour d...