Unfair Expectations
Not going to lie. We have had a couple of rough weeks.
We found out Hunter was exposed to strep the day before he started his last round of IVIG (but we didn't know until that Friday). We have had some aggression over the past couple of weeks, different than I have seen dur"ing month two. I have been pretty down about the behaviors I have been seeing, and not wanting to be honest about the slight regression. However, with this period of observation and determination of further treatment, it is hard to identify the sole causal factor and separate parent judgment from reality.
Hunter forgot his napmat at OT this past Wednesday, so on my lunch break I sped up to the downtown location, and hurried back to drop off his napmat at the preschool. As I was pulling away, I saw Peyton's class outside playing. I pulled over to observe him in the element- his teacher had him help her sweep the woodchips he and two other boys had thrown all over the sidewalk (classic Peyton), and then ran around to join his friends in line. He followed all their instructions and then sang "open and shut them," right with the teachers, doing all the hand motions and singing. As they all filed into class, my mind, like it usually does, turned to Hunter.
So unfair.
He used to do those same things!! I wanted to scream, "He was robbed of this normalcy!!"
I texted Peter between tears to tell him what I had observed- and his response, of course, was perfect. He replied, "You have to think that Hunter is making so many strides in the right direction to understand and hopefully get to feel those emotions and activities."
He went on to say, "We can only control what we can control. And the same goes for him, unfortunately. We are doing our best and so is he."
There is so much truth in that last statement. He IS doing his best. We cannot expect him to miraculously change in three months. He has been "sick" for over three years. He has accomplished so many new skills and we have seen so much good in the last few weeks that it should trump all the bad. I think one difficulty in trying to make a judgment call is that I have forgotten how bad it used to be. I reviewed some blog entries prior to IVIG and that's when I realized my unfair expectations.
He has come SO far. Today I attended his preschool chapel service, with songs by the children. We waited until the classes filed in, and then we sat in the back. Hunter had been turning around, looking for us- I told him we would be there. He finally grabbed my eyes, and gave a quick, helpless glance...but it slowly turned into a coy smile. He turned back to face our priest, and quickly flipped around again to make sure I was still there. I gave him a reassuring "thumbs up," the sign I always give when he needs a little pat on the back. He sat for almost 30 minutes until our priest played his harmonica and the kids erupted into applause. All of a sudden, he turned into a sensory mess. He started hitting his teacher, screaming, kicking his feet...I went up to the front and brought him back with me to the middle of the church. He kept crying, and told me after I reassured him he was OK, "But I hit!"
My expectation at that time was to calm him down. But he took it to another level and realized that he had made a mistake. For the first time, he actually realized the result of his action due to his sensory defensiveness.
Win.
I was initially disappointed that he didn't make it through the whole program, but he 1)walked up to get a blessing with holy oil on his head (he had screamed throughout this process pre-IVIG), 2) went up to the front to take a picture with his friends at the request of his teachers 3) joined his friends in line 4) took a picture outside with his class 5) had a hard transition initially, but recovered and went back into his class to have snack time so I could leave 6) had a GREAT rest of the day, despite the tailspin that had occurred previously.
When you look at that list above, he most definitely exceeded my expectations.
I returned to school early that day for his Easter party, where I found him seated at the table among his friends, making an Easter craft. He then had a cupcake with the class, followed the line outside for an egg hunt, and made it through the rest of the party with little trouble.
I cannot expect for a miracle this early in treatment. I need to remember how hard life was a few months ago, and how the majority of days ended with hitting, kicking, and yelling. If you look at the average of hard days vs. good days, the good trumps the bad.
And it shouldn't even be about "good days." I'll take manageable at this point.
Even though month three has not been as magnificent as month two, I can't expect to have Hunter completely recover. We knew that wasn't a realistic expectation going into treatment. We just need to expect to have a happier, less inflamed child.
And we do.
We meet with our neuroimmunologist May 9th to determine if we have met his expectations...and our own. Please pray for clear, non-biased judgment and a definitive answer.
Pictures from the last weeks...
Paige stuck Elsa in my suitcase- so cute! Golf!!
We found out Hunter was exposed to strep the day before he started his last round of IVIG (but we didn't know until that Friday). We have had some aggression over the past couple of weeks, different than I have seen dur"ing month two. I have been pretty down about the behaviors I have been seeing, and not wanting to be honest about the slight regression. However, with this period of observation and determination of further treatment, it is hard to identify the sole causal factor and separate parent judgment from reality.
Hunter forgot his napmat at OT this past Wednesday, so on my lunch break I sped up to the downtown location, and hurried back to drop off his napmat at the preschool. As I was pulling away, I saw Peyton's class outside playing. I pulled over to observe him in the element- his teacher had him help her sweep the woodchips he and two other boys had thrown all over the sidewalk (classic Peyton), and then ran around to join his friends in line. He followed all their instructions and then sang "open and shut them," right with the teachers, doing all the hand motions and singing. As they all filed into class, my mind, like it usually does, turned to Hunter.
So unfair.
He used to do those same things!! I wanted to scream, "He was robbed of this normalcy!!"
I texted Peter between tears to tell him what I had observed- and his response, of course, was perfect. He replied, "You have to think that Hunter is making so many strides in the right direction to understand and hopefully get to feel those emotions and activities."
He went on to say, "We can only control what we can control. And the same goes for him, unfortunately. We are doing our best and so is he."
There is so much truth in that last statement. He IS doing his best. We cannot expect him to miraculously change in three months. He has been "sick" for over three years. He has accomplished so many new skills and we have seen so much good in the last few weeks that it should trump all the bad. I think one difficulty in trying to make a judgment call is that I have forgotten how bad it used to be. I reviewed some blog entries prior to IVIG and that's when I realized my unfair expectations.
He has come SO far. Today I attended his preschool chapel service, with songs by the children. We waited until the classes filed in, and then we sat in the back. Hunter had been turning around, looking for us- I told him we would be there. He finally grabbed my eyes, and gave a quick, helpless glance...but it slowly turned into a coy smile. He turned back to face our priest, and quickly flipped around again to make sure I was still there. I gave him a reassuring "thumbs up," the sign I always give when he needs a little pat on the back. He sat for almost 30 minutes until our priest played his harmonica and the kids erupted into applause. All of a sudden, he turned into a sensory mess. He started hitting his teacher, screaming, kicking his feet...I went up to the front and brought him back with me to the middle of the church. He kept crying, and told me after I reassured him he was OK, "But I hit!"
My expectation at that time was to calm him down. But he took it to another level and realized that he had made a mistake. For the first time, he actually realized the result of his action due to his sensory defensiveness.
Win.
I was initially disappointed that he didn't make it through the whole program, but he 1)walked up to get a blessing with holy oil on his head (he had screamed throughout this process pre-IVIG), 2) went up to the front to take a picture with his friends at the request of his teachers 3) joined his friends in line 4) took a picture outside with his class 5) had a hard transition initially, but recovered and went back into his class to have snack time so I could leave 6) had a GREAT rest of the day, despite the tailspin that had occurred previously.
When you look at that list above, he most definitely exceeded my expectations.
I returned to school early that day for his Easter party, where I found him seated at the table among his friends, making an Easter craft. He then had a cupcake with the class, followed the line outside for an egg hunt, and made it through the rest of the party with little trouble.
I cannot expect for a miracle this early in treatment. I need to remember how hard life was a few months ago, and how the majority of days ended with hitting, kicking, and yelling. If you look at the average of hard days vs. good days, the good trumps the bad.
And it shouldn't even be about "good days." I'll take manageable at this point.
Even though month three has not been as magnificent as month two, I can't expect to have Hunter completely recover. We knew that wasn't a realistic expectation going into treatment. We just need to expect to have a happier, less inflamed child.
And we do.
We meet with our neuroimmunologist May 9th to determine if we have met his expectations...and our own. Please pray for clear, non-biased judgment and a definitive answer.
Pictures from the last weeks...
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| Paige- 2 goals in her last game! |
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| Dr. Paige |
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| yep, both are playing electronics. wanted to fully watch Paige's last game! |
Easter Morning
Dyeing Easter eggs
Tea party time
Hunter's Easter Party
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| love these teachers! |
Some pictures from our trip to FL
Dinner at Rainforest Café to celebrate Paige's report card, Hunter's IVIG completion, and Peyton's potty training!
March of Dimes walk- our only pictures in the bluebonnets this year
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| our little preemie...from 4lb 10oz to tallest girl in her class! |
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