Skip to main content

First Week of Summer Vacation - Busy, Busy, Busy

Ethan's last day of school was Friday, June 12th. I cried. It was an ugly cry. I really loved Ethan's school and it was such a great experience for him this past year. I will miss his school and the opportunities that he had at Valeska. This fall Ethan will be at a new school and a few of his classmates will likely be joining him in the newly created DHH (Deaf and Hard of Hearing) Plus class which is going to be geared specifically for children who are Deaf or Hard of Hearing and have additional challenges. There is still a lot of details to be worked out since this is a completely new class but I am praying that it will be a good fit for Ethan.
Last Day of School
One of the biggest fears/concerns with school ending is that last summer Ethan suffered a major regression in his mobility during the summer. Ethan does so much more at school than he does for us at home and the amount of therapy he receives drastically declines during the summer, because in many ways he is receiving therapy all day at school because his teachers make him work hard! Additionally, Ethan gets bored at home but many of the activities that you would do during the summer with a typically developing almost 5 year are not appropriate for Ethan and/or it isn't something that he is going to enjoy. Therefore, staying active/busy can be a challenge for us. However, we found a number of things to keep us busy during our first week of summer vacation.

Monday - Ethan and I had lunch and a play date with friends from church.
Tuesday - We walked with a friend in the morning and then went to the Farm Park and met up with a different friend from church and her two kids. In the evening we went to church and Ethan played with one of the ladies on Ethan's "team" and Jeff and I spent some time together in prayer and reading the Bible.
Checking stuff out at the Farm Park

Wednesday - Ethan began summer therapy services from our school district today. Our district does not have a summer school program for kids like Ethan, but in his IEP we have made sure that he receives summer therapy services. There are 5 weeks of summer therapy services, but during the first week he was still in school at Valeska, so he'll only be getting 4 weeks of therapy with our school district. His therapy takes place at the school (TJ) that he'll be attending in the Fall, so we are getting a little bit of a opportunity to help familiarize Ethan with the new surroundings. Ethan had Speech in the early morning, and then we came back in the afternoon for Physical Therapy. Ethan also got a haircut! He wasn't very happy about the haircut this time and although it isn't perfect, because Ethan was DONE, I still think she did a good job. 

Thursday - Ethan had Occupational Therapy at TJ, and Speech at Easter Seals in the morning. Then in the afternoon we returned to Easter Seals for Physical Therapy. He worked hard! Ethan likes being out of the house and typically loves school/therapy but he didn't seem to enjoy all the trips back and forth.

Friday - Ethan had an appointment with his new Orthopedic. We have been concerned about how much his feet/legs are turning in while he walks. At this point it appears to not be bone related, most likely due to low tone and the doctor admitted that he'd never seen a kid with PBD-ZSD so we will be getting some hip x-rays done just to check and make sure there isn't something going on that we need to address sooner than later. We will be getting those done soon. For now Ethan will continue to wear his AFOs and we keep encouraging as much weight bearing and walking as possible.  

Saturday - We took our first family trip to the local nature park. The trails weren't extremely wheelchair/stroller friendly so we could only go so far before we had to turn around, but we had a nice little walk. It was a morning to be outside. In the evening we had a fellowship with our Sunday morning Bible Study group at Safety Town. We'd never been to Safety Town before but it is this really weird yet cool park that is a place where kids can ride their bikes. 

Sunday - Father's Day! We started the morning off with a meeting at church with Ethan's "team." We've added two new members, for a total of eight ladies who volunteer to be Ethan's one-on-one so that Jeff and I can attend Sunday School and the Worship Service knowing that he is cared for. We've also made the decision to move Ethan from the crawler room up to the older toddler room (18-24 months) and also have him push into the young 2s class for Bible Story Time during the Sunday School hour. After church we spent the day here at home together. I'm very thankful for Jeff. He is a great dad and Ethan loves him so much!

I'm pretty sure not all of our summer will be as busy as this first week, but in many ways busy is okay especially since Ethan doesn't really enjoy being at home and frequently crawls to the door to the garage and bangs on it because he wants to leave! Being Ethan's mom isn't easy but these days there is almost as much laughter and happiness as their is tears and sadness. I'm praying that this will be a great summer for Ethan and our family.


Popular posts from this blog

So much and so little to write about...

When I started this blog I don't think that I could have imagined a time would come in which months would go by without me writing. However, that is what has happened.

So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Peroxiso…

A Family of 3 Once Again....

Jason Johnson is a writer of a blog and several books about fostering and adoption. One of his recent posts "Foster Care, Adoption, and Saying Yes to the Unknown" is a powerful and insightful look into the life of a foster parent. I'll be the first one to admit that when we said "YES" to two little girls who needed a family that we never thought that I'd be writing about the girls return to their biological parents. However, a little over a week ago our two foster daughters moved back in with their mom and dad.

"Saying Goodbye To The Foster Care Child I Fell In Love With," isn't exactly like our story, but there are a lot of similarities, and gives you a bit of a look into what we have experienced and are now experiencing. We are heartbroken and grieving. We miss them so very much, be we also know that they are loved and that they are happy. This summer as we prepared for this we spoke openly and often about the fact that you can be both happy…

Back to School Time!

It's that time again to head back to school! Ethan loves school, which is great. We know that we are extremely blessed to have a great team of professionals who work with him daily. When we first received the PBD-ZSD diagnosis I couldn't even imagine that Ethan would live long enough to go to preschool, let alone make it to elementary school. Even as I write this I can't help but think of all of my friends who aren't able to share first day of school pictures. "Dear Kindergarten Teacher: My son will be absent on the first day of school" is a beautiful tribute to bereaved parents everywhere. 
As school starts this year we are also thinking about and praying for our former foster daughters who are now back home with their biological parents. Driving by the bus stop, instead of walking down there with three children in tow, like I did the previous two school years, on the first day was a bit emotional. Since we don't live in the same town, that means the gi…