When you're left with options, do you choose faith or facts?
Sometimes life just doesn't seem fair.
You put work into a project, only to see your boss retract it.
You book a trip, and a hurricane cancels it.
You stay up late to mop the floors, only to have your children spill milk on it early the next morning.
You put 7 years into research, therapies, countless dollars, thousands of hours in the car driving to appointments, IEP meetings, and expensive, risky procedures to save your son from the Autoimmune Disorder that attacked his brain at 19 months...
only to hear your doctor say:
"IVIG might not be working anymore."
We knew this day would come. We knew we would find our new baseline, and we wouldn't see anymore relief with our IVIG treatments and that would be our new normal.
I had come to terms with this fact. I knew we wouldn't hit 100%, and I was OK with it.
However, I was not OK with regression instead of a plateau.
At our 5 hour long appointment on Friday, we met with every professional in the Neurology Dept: Social Services, School Support, Neuropsych, Neurologist, and our beloved Neuroimmunologist. We even had a visit from the Nutritionist, but that was a mistake. He knocked on the wrong door. :)
Hunter was in a great mood that morning, as all would figure after weeks of horrible non-compliance. However, once he was agitated (I purposefully allowed him to show pictures on my phone to the neurologist, because I knew he would sneak away to watch videos. I took my phone away and all hell broke loose. I wanted them to see how fast he ramped from 0 to 100 for a good clinical assessment; every decision can't be based on parent report.
He did the same interaction with the next professional (NeuroPsych), and his rage became more intense and much louder. He screamed at me for 30 minutes straight to give him the phone, but I continued to ignore him. We carried on our conversation, and she told me, "This isn't typical 8 year old behavior." You think?? I had to bite my tongue and ask for her recommendations.
"I think he needs Day Treatment."
Gulp.
If you aren't familiar with day treatment, it's basically the step before they recommend inpatient (under psychologist/psychiatrist).
It's losing to this disease.
When Dr. G finally came to the room to conclude the round of interviews, after conferencing with his colleagues, he could tell we were at the end. Hunter was hungry, exhausted from his rages, and I was about to fall apart. He started dialogue with Hunter, which I completed appreciated. I think often times we speak to the parents, and forget to ask the child what they are struggling with the most.
In summary, he couldn't give a concrete answer for the clinical reason to the acute change we had been witnessing. He said it could be a virus, could be allergies, could be the rash (but he reminded me he will have lots of rashes throughout his life, and we won't always know what they are from)...
but his main hypothesis was that this was just one of those periods of brain development that children, neurotypical or not, experience. He asked me to think back to teenage years, when I probably wasn't nice to my parents. He said throughout our lives there are different periods when the brain is open to development- and this could be one of those stages. His behavior was accentuated with his inability to cope...so he reverted back to behaviors he knew from the past. H e said that the way he handles normal development is different than others, but it's STILL NORMAL DEVELOPMENT.
I told him that my biggest challenge was not having concrete answers. From our past experience before we started to medically intervene, each episodic behavior was tied to illness. So each time his behavior shifts, I find myself desperate for a reason, for an answer to what has gone wrong.
He did tell me that he was questioning whether IVIG was working or not. "Three months ago was IVIG working? I don't know. Six months ago was IVIG working? I don't know. Two years ago was IVIG working? Yes." He said he knows we made substantial progress over the years, but are we on a trajectory of not healing with IVIG or are we just in remission? And how are we choosing to deal with behaviors?
He recommended us doing day treatment in the near future, as we have all envisioned a larger, more aggressive child pre-puberty. I told him I wanted to talk to the school personnel and have them give me their honest opinion of keeping him in school or pulling him out to go to day treatment. The school had mixed reviews, so we were left trying to solve our complex puzzle this weekend.
Sunday, we went to Mass and it was just Peter, Hunter and I (Paige was at a sleepover and Peyton was in Sunday School). We had watched some of the movie, "The Passion" the night before, and wow, what an impact the Gospel had on us- everything seemed so much more real when you witness the pain and suffering he endured for us. Our priest gave a powerful homily, and invited all those who had witnessed the Holy Spirit over the past year to come forward for a blessing. I didn't expect more than 10 brave people to step forward...but the altar was packed. With my recent doubt for trusting God's great plan, I couldn't stand up. But after his blessing, and the congregation raising their hands to extend a blessing as well, everyone clapped- and the sunlight shone through the windows of the church. Peter actually noticed it first, and nudged me to look upwards. It was such a beautiful sign of hope, renewal, warmth, and strength.
I don't remember praying as hard as I did in church this weekend. Please, give us an answer. Give us strength.
Give us hope.
Last night, I pulled out an old token economy star chart, and decided we would use it to get through Monday (he had starting door slamming and yelling when we reminded all the kids at dinner that it was a school day tomorrow). He listened intently as I presented the 5 stars he had to earn (for getting out of the car in the loop, math, writing, social studies/science, and word work. We talked about the ease of just trying to earn stars, and he chose a visit to the public library as a reward for getting all 5 stars on Day 1.
Today, I've stalked him class dojo (point tracking system) , and last Monday he was lighting it up red by 8 AM.
Today, he has all green points.
We are waiting a call back from the intake coordinator for the day treatment program to determine if we will send him before school ends.
I needed to see if a change in behavior modification was all he needed to get back on track. I couldn't stand sending our child to day treatment if he could do it on his own.
So for today, I'm choosing faith. I can't look at the facts of his horrible non-compliance, non-learning, aggression from the last 3 weeks.
I'm not choosing the facts today.
I am hopeful that one day, when we ARE recovered, and we are sitting around reading this blog, as we prepare him to take the SATs for college, or prep him for his driver's test...
we will tell him these "facts" of the past are now fiction.
You put work into a project, only to see your boss retract it.
You book a trip, and a hurricane cancels it.
You stay up late to mop the floors, only to have your children spill milk on it early the next morning.
You put 7 years into research, therapies, countless dollars, thousands of hours in the car driving to appointments, IEP meetings, and expensive, risky procedures to save your son from the Autoimmune Disorder that attacked his brain at 19 months...
only to hear your doctor say:
"IVIG might not be working anymore."
We knew this day would come. We knew we would find our new baseline, and we wouldn't see anymore relief with our IVIG treatments and that would be our new normal.
I had come to terms with this fact. I knew we wouldn't hit 100%, and I was OK with it.
However, I was not OK with regression instead of a plateau.
At our 5 hour long appointment on Friday, we met with every professional in the Neurology Dept: Social Services, School Support, Neuropsych, Neurologist, and our beloved Neuroimmunologist. We even had a visit from the Nutritionist, but that was a mistake. He knocked on the wrong door. :)
Hunter was in a great mood that morning, as all would figure after weeks of horrible non-compliance. However, once he was agitated (I purposefully allowed him to show pictures on my phone to the neurologist, because I knew he would sneak away to watch videos. I took my phone away and all hell broke loose. I wanted them to see how fast he ramped from 0 to 100 for a good clinical assessment; every decision can't be based on parent report.
He did the same interaction with the next professional (NeuroPsych), and his rage became more intense and much louder. He screamed at me for 30 minutes straight to give him the phone, but I continued to ignore him. We carried on our conversation, and she told me, "This isn't typical 8 year old behavior." You think?? I had to bite my tongue and ask for her recommendations.
"I think he needs Day Treatment."
Gulp.
If you aren't familiar with day treatment, it's basically the step before they recommend inpatient (under psychologist/psychiatrist).
It's losing to this disease.
When Dr. G finally came to the room to conclude the round of interviews, after conferencing with his colleagues, he could tell we were at the end. Hunter was hungry, exhausted from his rages, and I was about to fall apart. He started dialogue with Hunter, which I completed appreciated. I think often times we speak to the parents, and forget to ask the child what they are struggling with the most.
In summary, he couldn't give a concrete answer for the clinical reason to the acute change we had been witnessing. He said it could be a virus, could be allergies, could be the rash (but he reminded me he will have lots of rashes throughout his life, and we won't always know what they are from)...
but his main hypothesis was that this was just one of those periods of brain development that children, neurotypical or not, experience. He asked me to think back to teenage years, when I probably wasn't nice to my parents. He said throughout our lives there are different periods when the brain is open to development- and this could be one of those stages. His behavior was accentuated with his inability to cope...so he reverted back to behaviors he knew from the past. H e said that the way he handles normal development is different than others, but it's STILL NORMAL DEVELOPMENT.
I told him that my biggest challenge was not having concrete answers. From our past experience before we started to medically intervene, each episodic behavior was tied to illness. So each time his behavior shifts, I find myself desperate for a reason, for an answer to what has gone wrong.
He did tell me that he was questioning whether IVIG was working or not. "Three months ago was IVIG working? I don't know. Six months ago was IVIG working? I don't know. Two years ago was IVIG working? Yes." He said he knows we made substantial progress over the years, but are we on a trajectory of not healing with IVIG or are we just in remission? And how are we choosing to deal with behaviors?
He recommended us doing day treatment in the near future, as we have all envisioned a larger, more aggressive child pre-puberty. I told him I wanted to talk to the school personnel and have them give me their honest opinion of keeping him in school or pulling him out to go to day treatment. The school had mixed reviews, so we were left trying to solve our complex puzzle this weekend.
Sunday, we went to Mass and it was just Peter, Hunter and I (Paige was at a sleepover and Peyton was in Sunday School). We had watched some of the movie, "The Passion" the night before, and wow, what an impact the Gospel had on us- everything seemed so much more real when you witness the pain and suffering he endured for us. Our priest gave a powerful homily, and invited all those who had witnessed the Holy Spirit over the past year to come forward for a blessing. I didn't expect more than 10 brave people to step forward...but the altar was packed. With my recent doubt for trusting God's great plan, I couldn't stand up. But after his blessing, and the congregation raising their hands to extend a blessing as well, everyone clapped- and the sunlight shone through the windows of the church. Peter actually noticed it first, and nudged me to look upwards. It was such a beautiful sign of hope, renewal, warmth, and strength.
I don't remember praying as hard as I did in church this weekend. Please, give us an answer. Give us strength.
Give us hope.
Last night, I pulled out an old token economy star chart, and decided we would use it to get through Monday (he had starting door slamming and yelling when we reminded all the kids at dinner that it was a school day tomorrow). He listened intently as I presented the 5 stars he had to earn (for getting out of the car in the loop, math, writing, social studies/science, and word work. We talked about the ease of just trying to earn stars, and he chose a visit to the public library as a reward for getting all 5 stars on Day 1.
Today, I've stalked him class dojo (point tracking system) , and last Monday he was lighting it up red by 8 AM.
Today, he has all green points.
We are waiting a call back from the intake coordinator for the day treatment program to determine if we will send him before school ends.
I needed to see if a change in behavior modification was all he needed to get back on track. I couldn't stand sending our child to day treatment if he could do it on his own.
So for today, I'm choosing faith. I can't look at the facts of his horrible non-compliance, non-learning, aggression from the last 3 weeks.
I'm not choosing the facts today.
I am hopeful that one day, when we ARE recovered, and we are sitting around reading this blog, as we prepare him to take the SATs for college, or prep him for his driver's test...
we will tell him these "facts" of the past are now fiction.
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