I'm Tired
I've started and stopped this post two or three times now. I got a quite lengthy post done one night and when I read it back, it seemed to just be complaining. That's not what I want this blog to be about. I want it to be candid and reveal all sides to special needs life, but I don't want it to ever come across as a pity party.
Life has been difficult lately. Don't get me wrong. In many ways, life has been wonderful, but it has been extremely difficult. Kamden's father is a member of the Texas National Guard and he was deployed to help with relief efforts following the hurricane hitting Houston. Changes in an autism environment are never easy. We didn't even really receive notice that his dad was going until we got a text from him at the armory while he was waiting to board the buses. Kamden is fairly resilient, but between his dad unexpectedly going out of town and all the changes associated with starting a new school year, he's had a really rough go of it. As a result, it's been fairly rough on all of us.
The first week and a half of school was great. He was excited to see his friends and go back to the school. As expected, the excitement wore off fast and pretty soon it was a chore to go to school. I have a mini meeting with his resource room teacher every morning, a "briefing", if you will, to discuss what kind of mood he has been in since waking up, if we had a night that was out of the ordinary, go over general expectations for the day and prepare to make any accommodations that might need to be made for special circumstances. When I am off of work and able to pick him up, we also have a brief meeting to go over any "bumps" during the day or things that need to be addressed at home. Starting last week, we were not getting good reports at the end of the day. One day, it was just that he was making a conscious effort to ignore that teachers and aides were asking him to do. Another day, we got a report of what was possibly a bipolar episode, and a plan was made with his resource room teacher to document any additional episodes that may occur so that I can pass along the data to his developmental pediatrician when we go for a follow up next month. Fast forward to this week and the reports have been very disheartening. Yesterday, he flat out refused to do what was asked of him. It didn't matter if it was needing to complete an assignment, being asked to sit down, or being asked to do a fun task. If it wasn't his idea, he refused, and even got to a point of walking out of the classroom and trying to run away. When they did get him into the classroom, he was attempting to hit, to kick and to scratch his teachers and aides. The rest of the behaviors were attention seeking. He would try to get his classmates to goof off and laugh (which isn't bad, but not appropriate when in a classroom setting, obviously). Today, his overall behavior was described as being like hills. The "bumpy" moments were really, really bumpy, but the good moments were great! Kamden had therapies (occupational, speech and physical) yesterday and today after school, and from what I was told, his focus and behaviors were good while he was there.
I shared that to get this point across: when I talk to people who ask how I am and who genuinely want to know, and I say that I'm tired, I don't mean physical tiredness. Things like what I described above happen every day. Every. Single. Day. We thank God for the truly good days because they are so, so cherished, but truly good days (the ones with no bumps) are also incredibly rare. Every single day there is another meeting with a teacher. There are five therapy sessions a week outside of school, plus the three a week he does in school. There are the four medications a day I need to be sure he takes in order to make his day a bit more manageable and to help treat ADHD, OCD, sensory processing disorder, and an inability to sleep. There's the fact that for most of his personal care (brushing teeth, bathing, and to some degree even dressing himself) he is unable to do on his own. There's the struggle to get him to verbalize anything he's feeling. Good, bad, doesn't matter. He doesn't talk about it because he doesn't know how to put it into words. All this, and more, on top of daily life - bills, work, attempting to have a social life and stay somewhat sane.
I'm tired. I'm weary. I'm exhausted...and so much more. But giving up or even taking a break is not an option. He needs me to keep going. He needs me to educate the people who come across his path and don't understand him. He needs me to keep advocating for him. He's the reason I keep going. He's always the driving force to do better or achieve more. There are days that I may feel a tinge of resentment about how life has gone, but then he smiles or laughs or I see him learn something new. Then everything is okay again and I know I just have to make it one more day, hour, minute, or second.
I'm tired, but I'm not a quitter.
Life has been difficult lately. Don't get me wrong. In many ways, life has been wonderful, but it has been extremely difficult. Kamden's father is a member of the Texas National Guard and he was deployed to help with relief efforts following the hurricane hitting Houston. Changes in an autism environment are never easy. We didn't even really receive notice that his dad was going until we got a text from him at the armory while he was waiting to board the buses. Kamden is fairly resilient, but between his dad unexpectedly going out of town and all the changes associated with starting a new school year, he's had a really rough go of it. As a result, it's been fairly rough on all of us.
The first week and a half of school was great. He was excited to see his friends and go back to the school. As expected, the excitement wore off fast and pretty soon it was a chore to go to school. I have a mini meeting with his resource room teacher every morning, a "briefing", if you will, to discuss what kind of mood he has been in since waking up, if we had a night that was out of the ordinary, go over general expectations for the day and prepare to make any accommodations that might need to be made for special circumstances. When I am off of work and able to pick him up, we also have a brief meeting to go over any "bumps" during the day or things that need to be addressed at home. Starting last week, we were not getting good reports at the end of the day. One day, it was just that he was making a conscious effort to ignore that teachers and aides were asking him to do. Another day, we got a report of what was possibly a bipolar episode, and a plan was made with his resource room teacher to document any additional episodes that may occur so that I can pass along the data to his developmental pediatrician when we go for a follow up next month. Fast forward to this week and the reports have been very disheartening. Yesterday, he flat out refused to do what was asked of him. It didn't matter if it was needing to complete an assignment, being asked to sit down, or being asked to do a fun task. If it wasn't his idea, he refused, and even got to a point of walking out of the classroom and trying to run away. When they did get him into the classroom, he was attempting to hit, to kick and to scratch his teachers and aides. The rest of the behaviors were attention seeking. He would try to get his classmates to goof off and laugh (which isn't bad, but not appropriate when in a classroom setting, obviously). Today, his overall behavior was described as being like hills. The "bumpy" moments were really, really bumpy, but the good moments were great! Kamden had therapies (occupational, speech and physical) yesterday and today after school, and from what I was told, his focus and behaviors were good while he was there.
I shared that to get this point across: when I talk to people who ask how I am and who genuinely want to know, and I say that I'm tired, I don't mean physical tiredness. Things like what I described above happen every day. Every. Single. Day. We thank God for the truly good days because they are so, so cherished, but truly good days (the ones with no bumps) are also incredibly rare. Every single day there is another meeting with a teacher. There are five therapy sessions a week outside of school, plus the three a week he does in school. There are the four medications a day I need to be sure he takes in order to make his day a bit more manageable and to help treat ADHD, OCD, sensory processing disorder, and an inability to sleep. There's the fact that for most of his personal care (brushing teeth, bathing, and to some degree even dressing himself) he is unable to do on his own. There's the struggle to get him to verbalize anything he's feeling. Good, bad, doesn't matter. He doesn't talk about it because he doesn't know how to put it into words. All this, and more, on top of daily life - bills, work, attempting to have a social life and stay somewhat sane.
I'm tired. I'm weary. I'm exhausted...and so much more. But giving up or even taking a break is not an option. He needs me to keep going. He needs me to educate the people who come across his path and don't understand him. He needs me to keep advocating for him. He's the reason I keep going. He's always the driving force to do better or achieve more. There are days that I may feel a tinge of resentment about how life has gone, but then he smiles or laughs or I see him learn something new. Then everything is okay again and I know I just have to make it one more day, hour, minute, or second.
I'm tired, but I'm not a quitter.
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