Encephalitis is a Confusing Thing
I haven't blogged in several days. Summer has started, and our schedules are even busier than during the school year! I also haven't had the energy or the tenacity to blog...we have been on a downward slope the past few days.
Hunter had a very hard time last week at summer school. We were all so confident that he wouldn't need a therapist, would start the program with his same teacher and friends, and it would all be successful.
Wrong.
It took him 30 minutes to get in the classroom the first day, including hitting, screaming, kicking, knocking over trashcans, and 25 minutes the second day. We had a therapist attend both Tuesday and Wednesday, but they didn't have coverage for Thursday. So Peter and I were both nervous about the start of school...would he go in? We both have had very busy work weeks, and have each missed critical time while we tended to his non-compliance. Peter was on the schedule to drop him off Thursday, and for some reason, he walked right in. Completely opposite from the child who wouldn't get out of his car on Tuesday morning.
It hasn't all been negative...his therapist who attended Tuesday was amazed at his rapport with friends, his participation in the science projects, and little conversations that he started with his teachers.
It seems like ever since his fourth IVIG, we take one step forward, and then two steps back.
Encephalitis is a confusing thing.
But then we went to a friend's lakehouse last weekend and Hunter refused to get in the lake water the night we arrived. He didn't want his feet to touch the bottom of the lake. He screamed, cried, asked to go to bed...but the next morning, he decided on his own, "I want to get in the lake today, Mommy." And he jumped in...and stayed in all day. He had an absolute blast.
I could give a thousand reasons why we have seen regression. He hasn't been sleeping well- whenever there is a full moon, he wakes in the middle of the night. This included his birthday eve, when he was up from 2-5AM, wanting to just "wait until it turned 6:00 (when we told him he could wake)." I could not get the child back to bed. I tried everything...laying with him, having him sleep on the couch, sleep in our bed, but he ended up slamming doors and yelling at 4:30AM until I held him tightly in his bed where he finally calmed down. After prepping his presents till midnight, my three hours of total sleep made my patience level slim significantly.
Our physician also told us to throw summer out as far as data is concerned. With the change in schedules and the accessibility to toys and fun, any demand can be received with great conflict. He has done a good deal of home schooling work for me, but taking away the electronics has been quite the challenge.
Peter and I both were feeling the emotional wreckage that the constant up and downs leaves with you- and we both realized how much of our attitude is affected by how Hunter is doing. Sad reality, but this boy who we love so much takes so much in return.
We had a team meeting with his ABA therapists at the end of last week, and I told them that we needed more parent education in how to handle his recent behaviors. Should we ignore them? Should we discipline when he yells, "You're being rude!"??? (and those phrases have dropped in numbers, but they are still there).
It is so hard to be on an emotional roller coaster...but we knew this wasn't going to be an easy ride. When he conquered his own fear of the lake water and independently jumped in, it was a monumental moment for him. He yelled up to the deck, where I was getting Peyton ready, and said, "Mommy!! I did it!! I jumped in and I am standing on the bottom. And it's OK!!!!"
Time to buckle up.
Here are some of the fun activities that have kept us busy over the past few weeks:
New splash fountain park in our area
Getting ready for Paige's dance recital...I know she is my daughter, but she took my breath away! Her ballet was absolutely beautiful.
jazz costume for "What I like About You"
Ballet number to "Fly"
first time trying smores...
Had to take a picture of the full moon. Went out for a night run and came home to this beautiful moon over our house. I know you are supposed to wish on a star, but I can't say I didn't stop for a minute and hope for the best in the weeks to come.
Hunter had a very hard time last week at summer school. We were all so confident that he wouldn't need a therapist, would start the program with his same teacher and friends, and it would all be successful.
Wrong.
It took him 30 minutes to get in the classroom the first day, including hitting, screaming, kicking, knocking over trashcans, and 25 minutes the second day. We had a therapist attend both Tuesday and Wednesday, but they didn't have coverage for Thursday. So Peter and I were both nervous about the start of school...would he go in? We both have had very busy work weeks, and have each missed critical time while we tended to his non-compliance. Peter was on the schedule to drop him off Thursday, and for some reason, he walked right in. Completely opposite from the child who wouldn't get out of his car on Tuesday morning.
It hasn't all been negative...his therapist who attended Tuesday was amazed at his rapport with friends, his participation in the science projects, and little conversations that he started with his teachers.
It seems like ever since his fourth IVIG, we take one step forward, and then two steps back.
Encephalitis is a confusing thing.
But then we went to a friend's lakehouse last weekend and Hunter refused to get in the lake water the night we arrived. He didn't want his feet to touch the bottom of the lake. He screamed, cried, asked to go to bed...but the next morning, he decided on his own, "I want to get in the lake today, Mommy." And he jumped in...and stayed in all day. He had an absolute blast.
I could give a thousand reasons why we have seen regression. He hasn't been sleeping well- whenever there is a full moon, he wakes in the middle of the night. This included his birthday eve, when he was up from 2-5AM, wanting to just "wait until it turned 6:00 (when we told him he could wake)." I could not get the child back to bed. I tried everything...laying with him, having him sleep on the couch, sleep in our bed, but he ended up slamming doors and yelling at 4:30AM until I held him tightly in his bed where he finally calmed down. After prepping his presents till midnight, my three hours of total sleep made my patience level slim significantly.
Our physician also told us to throw summer out as far as data is concerned. With the change in schedules and the accessibility to toys and fun, any demand can be received with great conflict. He has done a good deal of home schooling work for me, but taking away the electronics has been quite the challenge.
Peter and I both were feeling the emotional wreckage that the constant up and downs leaves with you- and we both realized how much of our attitude is affected by how Hunter is doing. Sad reality, but this boy who we love so much takes so much in return.
We had a team meeting with his ABA therapists at the end of last week, and I told them that we needed more parent education in how to handle his recent behaviors. Should we ignore them? Should we discipline when he yells, "You're being rude!"??? (and those phrases have dropped in numbers, but they are still there).
It is so hard to be on an emotional roller coaster...but we knew this wasn't going to be an easy ride. When he conquered his own fear of the lake water and independently jumped in, it was a monumental moment for him. He yelled up to the deck, where I was getting Peyton ready, and said, "Mommy!! I did it!! I jumped in and I am standing on the bottom. And it's OK!!!!"
Time to buckle up.
Here are some of the fun activities that have kept us busy over the past few weeks:
New splash fountain park in our area
Getting ready for Paige's dance recital...I know she is my daughter, but she took my breath away! Her ballet was absolutely beautiful.
Then we spent the night at a friend's lake house- so much fun! The kids (and adults!) had a blast.
 |
| playing our own game of twister while waiting at Hunter's OT appointment |
 |
| home schooling |
Comments
Post a Comment