hitting the bottom with day treatment
We were up at 6:15 this morning to get ready for the kids' first day back at school. It really feels like we just got out of school for the summer.
This summer was one of the craziest for our families- you know, the type of crazy where you realize TODAY you never checked your 4th grader's state testing scores online. Or you haven't checked your paystubs for accuracy since April. Or you haven't talked to your best college buddies all summer long.
We spent 9 out of 11 weeks in therapy this summer. 6.5 weeks were spent in an intensive Interactive Metronome Program downtown which took 3 hours out of each day (4-5 days/week) to drive both ways and do the sessions. The other 2.5 weeks were spent in Day Treatment (8 hours each day).
Yes, we succumbed to day treatment. Bracelet wearing, door locking, unit-calling day treatment.
The first day we arrived I wanted to run. As I filled out the information sheets (after already submitting a 9-page parent information/interview) and had to bubble in a rating scale for items such as," He starts things on fire," "he has hurt a person or animal this week," I couldn't believe Hunter was appropriate for the program.
He did not want to be there, and after we left another 1.5 hour parent interview with the psychiatrists and social workers, he stared as we quickly walked out of the unit.
We left out son in a psych unit.
The next day, as I met with the admitting nurse, she went through his treatment plan and goals. I looked at her and asked point blank, "So he's appropriate for the program?"
"Oh yes, definitely."
We had lost.
We had let Autism and Autoimmune Encephalitis win since his last illness and regression, and we hadn't gotten our Hunter back yet.
The next 2 weeks were the toughest weeks I can ever recall. We had to chart his behavior every hour and remind him constantly about his "choice to earn points" by having 9 year old behavior, following directions with 1 reminder, and practicing his feeling plan (distraction plan to get him out of a difficult moment). Between creative patient scheduling for myself, the other time of the two weeks was spent in their required parent training sessions, parent counseling sessions, meeting with the social worker, conferencing with doctors and teachers...it was a full commitment for 2.5 weeks.
Our first weekend home was horrible. We knew it would be difficult, but when Hunter is on Level 1 (no privileges besides reading, puzzles, etc- no electronics, screen time, lightning mcqueen), we are on Level 1.
However, we stuck to our behavior mod plan and didn't waiver. We completely reaped the benefits by Wednesday of the next week. We had a sweet, compliant, intrinsically motivated child who wanted to please. We went the next 10 days with all Level 2 days.
Last night, we went to bed with optimistic expectations for the start of the school year. We had prayed so hard during day treatment for an answer, and now we had our son back.
Unfortunately, every optimistic hope I had was squashed. He didn't want to get out of bed. He didn't want to eat. He wanted to take the bus. He wanted to wear flip flops instead of tennis shoes (he's our summer boy- what can I say??). He wouldn't get in the car, and when I finally got him in the car, he refused to get out.
We made it in the building and every scream and shove came out of that child. He threw his backpack and proceeded to run out of the school, around the back, past a group of teachers, and all the way through the playground onto the residential street where I was parked. He crossed the street (by himself) and went to stand by my car. I waited awhile and went to him, explained for the 100th time he was choosing not to earn points. Nothing worked.
I finally told him that school was a law, and if he didn't go to school, he would have to go back to his program.
We made it back in the building, but I ended up leaving a screaming, kicking child in the special ed room. I did feel bad for all the kinder kids and parents who had to witness his actions on their first day of big school, but at the same time I wanted to punch the mom who, as I shut the door with screams inside, walked by and rolled her eyes, saying "WOAH!!"
If she only knew.....
So today, my perfectly printed 2017 school year signs lay on the entryway table. I had to drop off the first day of school teacher gift that I forgot to give to the teachers in the heat of the morning. I went to breakfast with a group of moms with my 3 day unwashed hair and gym clothes. I didn't buy solar screening glasses for the big eclipse today, and I really don't care about it.
Today, all I want is to pick up a smiling, excited 3rd grader ready for the school year.
I want to blend in the crowd instead of constantly feeling like we stick out.
Praying hard for peace and for patience for the teachers. And for grace for myself to not take my frustrations out on strangers just being curious.
If we dedicated 9 weeks of our 11 weeks of break to making this child better, it would be most heartening to see our hard work come to action.
This summer was one of the craziest for our families- you know, the type of crazy where you realize TODAY you never checked your 4th grader's state testing scores online. Or you haven't checked your paystubs for accuracy since April. Or you haven't talked to your best college buddies all summer long.
We spent 9 out of 11 weeks in therapy this summer. 6.5 weeks were spent in an intensive Interactive Metronome Program downtown which took 3 hours out of each day (4-5 days/week) to drive both ways and do the sessions. The other 2.5 weeks were spent in Day Treatment (8 hours each day).
Yes, we succumbed to day treatment. Bracelet wearing, door locking, unit-calling day treatment.
The first day we arrived I wanted to run. As I filled out the information sheets (after already submitting a 9-page parent information/interview) and had to bubble in a rating scale for items such as," He starts things on fire," "he has hurt a person or animal this week," I couldn't believe Hunter was appropriate for the program.
He did not want to be there, and after we left another 1.5 hour parent interview with the psychiatrists and social workers, he stared as we quickly walked out of the unit.
We left out son in a psych unit.
The next day, as I met with the admitting nurse, she went through his treatment plan and goals. I looked at her and asked point blank, "So he's appropriate for the program?"
"Oh yes, definitely."
We had lost.
We had let Autism and Autoimmune Encephalitis win since his last illness and regression, and we hadn't gotten our Hunter back yet.
The next 2 weeks were the toughest weeks I can ever recall. We had to chart his behavior every hour and remind him constantly about his "choice to earn points" by having 9 year old behavior, following directions with 1 reminder, and practicing his feeling plan (distraction plan to get him out of a difficult moment). Between creative patient scheduling for myself, the other time of the two weeks was spent in their required parent training sessions, parent counseling sessions, meeting with the social worker, conferencing with doctors and teachers...it was a full commitment for 2.5 weeks.
Our first weekend home was horrible. We knew it would be difficult, but when Hunter is on Level 1 (no privileges besides reading, puzzles, etc- no electronics, screen time, lightning mcqueen), we are on Level 1.
However, we stuck to our behavior mod plan and didn't waiver. We completely reaped the benefits by Wednesday of the next week. We had a sweet, compliant, intrinsically motivated child who wanted to please. We went the next 10 days with all Level 2 days.
Last night, we went to bed with optimistic expectations for the start of the school year. We had prayed so hard during day treatment for an answer, and now we had our son back.
Unfortunately, every optimistic hope I had was squashed. He didn't want to get out of bed. He didn't want to eat. He wanted to take the bus. He wanted to wear flip flops instead of tennis shoes (he's our summer boy- what can I say??). He wouldn't get in the car, and when I finally got him in the car, he refused to get out.
We made it in the building and every scream and shove came out of that child. He threw his backpack and proceeded to run out of the school, around the back, past a group of teachers, and all the way through the playground onto the residential street where I was parked. He crossed the street (by himself) and went to stand by my car. I waited awhile and went to him, explained for the 100th time he was choosing not to earn points. Nothing worked.
I finally told him that school was a law, and if he didn't go to school, he would have to go back to his program.
We made it back in the building, but I ended up leaving a screaming, kicking child in the special ed room. I did feel bad for all the kinder kids and parents who had to witness his actions on their first day of big school, but at the same time I wanted to punch the mom who, as I shut the door with screams inside, walked by and rolled her eyes, saying "WOAH!!"
If she only knew.....
So today, my perfectly printed 2017 school year signs lay on the entryway table. I had to drop off the first day of school teacher gift that I forgot to give to the teachers in the heat of the morning. I went to breakfast with a group of moms with my 3 day unwashed hair and gym clothes. I didn't buy solar screening glasses for the big eclipse today, and I really don't care about it.
Today, all I want is to pick up a smiling, excited 3rd grader ready for the school year.
I want to blend in the crowd instead of constantly feeling like we stick out.
Praying hard for peace and for patience for the teachers. And for grace for myself to not take my frustrations out on strangers just being curious.
If we dedicated 9 weeks of our 11 weeks of break to making this child better, it would be most heartening to see our hard work come to action.
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