Where's Heaven, Mommy?
Such a good question.
The thing is, I didn't really know how to answer it. I told him Heaven was all around us...and those who have passed before us can share in our lives and experiences here on Earth.
But then the questions got a little deeper and a little harder...
"Will you go to Heaven with me?"
Well, someday we will see each other in Heaven again.
"Can I take my memory book with me, so that I can look at a picture of you and me from the Fairy Tale Ball?"
By this point, I am wiping tears.
The tears aren't solely for the difficult topic at hand. It's hard for anyone to talk about the unknown, let alone the complexity of the concept.
The tears flowed for these amazing, deep questions.
Since his last IVIG, we have had some hard days. Last summer, during the same time period, we had extremely hard days. Paige had strep, he reacted to her with increased antibody production, and we saw more aggression than we had seen in months. We chalked some of it up to trip anxiety, and I truly feel like we were dealing with some of the same this year. We also just started a real routine this week, and with many appointments these last two weeks, we haven't been able to follow the schedule like I had hoped. We are still getting our DEAR time (drop everything and read), math books, flashcards, writing, etc....but the schedule that this child thrives on hasn't been solidified.
I have heard nasty words, phrases, and have picked his skeleton key up off the floor from his door slamming multiple times. We also haven't been consistent on bedtime. We were so fortunate to have visitors this weekend, but with any shift in his bed routine, we usually see an effect the next day. Going off of very little sleep over the two days of the holiday, swimming, entertaining...he was a mess part of the time.
But his conversation and his attention to other's comments has astounded me. Half the time I don't think he is listening, and there he is with a follow-up question to something I had stated. Paige had two friends sleep over the other night, and in the morning he said, "Paige and the girls are having the longest playdate ever." Or if I use a "big" word, he always asks me what the word means.
I have chuckled over cute comments, smiled with inquisitive questions, and cried with the difficult topics he has been contemplating.
I am SO proud of this kiddo. He has started the Interactive Metronome Program. What is that, right?
"IM is an assessment and treatment tool used by therapists and other professionals who work with pediatric and adult patients with neurological conditions that affect cognitive and motor functioning. IM provides an objective method for measuring deficits and for tracking improvement.
IM is an evidence-based, engaging therapeutic modality that improves cognitive and motor skills. The design of the program ensures that patients recognize progress as it is occurring, increasing their motivation toward therapy and their ultimate recovery."
"Did you know that your brain has an “internal clock” that keeps time? And that it does so at various intervals: microseconds, milliseconds, seconds, minutes, and hours? Timing in the brain (or what scientists call “temporal processing”) is responsible for detecting where a sound is coming from as sound hits one ear microseconds before the other, for waking up and putting to sleep our brain every 12 hours or so, and for focusing attention, reading comprehension, remembering information, processing speech, motor coordination, and several other human capabilities.
There exists a growing body of literature describing the neural timing deficits in ADHD, Dyslexia, Autism, Reading Disorders, Auditory Processing Disorder, Parkinson’s, and other conditions. Traumatic Brain Injury or Stroke may also disrupt timing in the brain. By addressing timing in the brain with Interactive Metronome (IM) alongside functional therapy interventions you are not only addressing areas of ability that impact achievement and independence but also the heart of the problem, that of deficient neural timing within and between regions of the brain that are underlying many of the problems you are working on in therapy. This leads to more efficient treatment and better overall treatment outcomes.
IM's game-like auditory-visual platform engages the patient and provides constant feedback at the millisecond level to promote synchronized timing in the brain. Exercises can be customized and involve a hierarchy of increasingly complex and precisely timed motor movements intertwined with gradually higher & faster cognitive processing, attention and decision-making. It is the only neuro-motor therapy tool that can be used successfully with all patients across the therapy spectrum, even those that require total hands-on assistance due to cognitive and/or physical impairments and those that are very young or elderly.
IM takes therapy to a new level. Rather than simply performing repetitive movement or cognitive activities to achieve functional gains, therapists that incorporate IM into functional therapy activities report their patients are more engaged, more alert, complete far more repetitions of functional movement patterns and activities in a more precise and timely manner, and demonstrate faster progress toward cognitive, communicative, and physical therapy goals. Patients who are challenged and can see measurable improvements are more motivated to continue their therapy and achieve optimal success."
Source: IM website
Last year, I asked his therapist to attempt the program with him. She told me politely he wasn't ready yet. After a successful kindergarten year and so much recovery with IVIG, I brought it up again this past May. His OT thought for a minute, and decided to talk to the therapist in charge of the program. They both decided to give it a shot! He has to work up to the neurointensive designed entirety of the program (45 minutes), but today he tolerated the headphones and program for 22 minutes!! His OT was blown away by his focus and attention to the program.
The lead IM therapist talked with me after the eval a few weeks ago to explain the testing results. I told her I believed in the philosophy and filled her in on Hunter's case history. I told her my view on recovery....for if the skills were there previously, we just need to remap and regain. She told me that she has another patient who suffered an event like Hunter did, and she actually recommended to the mother that she find an immunologist/ IVIG due to the transformation she has seen with Hunter over the year.
I can't explain how awesome it is to get that kind of raw, real data...it is truly working. These two OT's see Hunter on a weekly basis, and he went from an aggressive, kicking child to a compliant, 22-minute IM'ing kiddo.
We see our big doctor next week, after a follow-up with the pediatric dermatologist. I can't wait for him to see his Vitiligo and shine his little purple light on his hip...it looks to me like it is repigmenting.
I can't wait to share his ABA data with his big doc.
I can't wait to tell him the story of the IM therapist.
I can't wait for him to just talk with Hunter...for that should speak volumes.
This kid.
The picture says it all.
The thing is, I didn't really know how to answer it. I told him Heaven was all around us...and those who have passed before us can share in our lives and experiences here on Earth.
But then the questions got a little deeper and a little harder...
"Will you go to Heaven with me?"
Well, someday we will see each other in Heaven again.
"Can I take my memory book with me, so that I can look at a picture of you and me from the Fairy Tale Ball?"
By this point, I am wiping tears.
The tears aren't solely for the difficult topic at hand. It's hard for anyone to talk about the unknown, let alone the complexity of the concept.
The tears flowed for these amazing, deep questions.
Since his last IVIG, we have had some hard days. Last summer, during the same time period, we had extremely hard days. Paige had strep, he reacted to her with increased antibody production, and we saw more aggression than we had seen in months. We chalked some of it up to trip anxiety, and I truly feel like we were dealing with some of the same this year. We also just started a real routine this week, and with many appointments these last two weeks, we haven't been able to follow the schedule like I had hoped. We are still getting our DEAR time (drop everything and read), math books, flashcards, writing, etc....but the schedule that this child thrives on hasn't been solidified.
I have heard nasty words, phrases, and have picked his skeleton key up off the floor from his door slamming multiple times. We also haven't been consistent on bedtime. We were so fortunate to have visitors this weekend, but with any shift in his bed routine, we usually see an effect the next day. Going off of very little sleep over the two days of the holiday, swimming, entertaining...he was a mess part of the time.
But his conversation and his attention to other's comments has astounded me. Half the time I don't think he is listening, and there he is with a follow-up question to something I had stated. Paige had two friends sleep over the other night, and in the morning he said, "Paige and the girls are having the longest playdate ever." Or if I use a "big" word, he always asks me what the word means.
I have chuckled over cute comments, smiled with inquisitive questions, and cried with the difficult topics he has been contemplating.
I am SO proud of this kiddo. He has started the Interactive Metronome Program. What is that, right?
"IM is an assessment and treatment tool used by therapists and other professionals who work with pediatric and adult patients with neurological conditions that affect cognitive and motor functioning. IM provides an objective method for measuring deficits and for tracking improvement.
IM is an evidence-based, engaging therapeutic modality that improves cognitive and motor skills. The design of the program ensures that patients recognize progress as it is occurring, increasing their motivation toward therapy and their ultimate recovery."
"Did you know that your brain has an “internal clock” that keeps time? And that it does so at various intervals: microseconds, milliseconds, seconds, minutes, and hours? Timing in the brain (or what scientists call “temporal processing”) is responsible for detecting where a sound is coming from as sound hits one ear microseconds before the other, for waking up and putting to sleep our brain every 12 hours or so, and for focusing attention, reading comprehension, remembering information, processing speech, motor coordination, and several other human capabilities.
There exists a growing body of literature describing the neural timing deficits in ADHD, Dyslexia, Autism, Reading Disorders, Auditory Processing Disorder, Parkinson’s, and other conditions. Traumatic Brain Injury or Stroke may also disrupt timing in the brain. By addressing timing in the brain with Interactive Metronome (IM) alongside functional therapy interventions you are not only addressing areas of ability that impact achievement and independence but also the heart of the problem, that of deficient neural timing within and between regions of the brain that are underlying many of the problems you are working on in therapy. This leads to more efficient treatment and better overall treatment outcomes.
IM's game-like auditory-visual platform engages the patient and provides constant feedback at the millisecond level to promote synchronized timing in the brain. Exercises can be customized and involve a hierarchy of increasingly complex and precisely timed motor movements intertwined with gradually higher & faster cognitive processing, attention and decision-making. It is the only neuro-motor therapy tool that can be used successfully with all patients across the therapy spectrum, even those that require total hands-on assistance due to cognitive and/or physical impairments and those that are very young or elderly.
IM takes therapy to a new level. Rather than simply performing repetitive movement or cognitive activities to achieve functional gains, therapists that incorporate IM into functional therapy activities report their patients are more engaged, more alert, complete far more repetitions of functional movement patterns and activities in a more precise and timely manner, and demonstrate faster progress toward cognitive, communicative, and physical therapy goals. Patients who are challenged and can see measurable improvements are more motivated to continue their therapy and achieve optimal success."
Source: IM website
Last year, I asked his therapist to attempt the program with him. She told me politely he wasn't ready yet. After a successful kindergarten year and so much recovery with IVIG, I brought it up again this past May. His OT thought for a minute, and decided to talk to the therapist in charge of the program. They both decided to give it a shot! He has to work up to the neurointensive designed entirety of the program (45 minutes), but today he tolerated the headphones and program for 22 minutes!! His OT was blown away by his focus and attention to the program.
The lead IM therapist talked with me after the eval a few weeks ago to explain the testing results. I told her I believed in the philosophy and filled her in on Hunter's case history. I told her my view on recovery....for if the skills were there previously, we just need to remap and regain. She told me that she has another patient who suffered an event like Hunter did, and she actually recommended to the mother that she find an immunologist/ IVIG due to the transformation she has seen with Hunter over the year.
I can't explain how awesome it is to get that kind of raw, real data...it is truly working. These two OT's see Hunter on a weekly basis, and he went from an aggressive, kicking child to a compliant, 22-minute IM'ing kiddo.
We see our big doctor next week, after a follow-up with the pediatric dermatologist. I can't wait for him to see his Vitiligo and shine his little purple light on his hip...it looks to me like it is repigmenting.
I can't wait to share his ABA data with his big doc.
I can't wait to tell him the story of the IM therapist.
I can't wait for him to just talk with Hunter...for that should speak volumes.
This kid.
The picture says it all.
Comments
Post a Comment