End of IVIG #8 and hearing the word "untestable"
IVIG #8 finished last Thursday. Wednesday night was a rough one- Hunter woke up at 2 AM and told me his stomach hurt. He hasn't had nausea since round #1, so I didn't know if it was related at first, since he told me he ate non- GF O's. However, after sitting, holding, trying a glass of water...he vomited. I felt so bad for him- but once he got it out, he was much better. He spent the night (well, the rest of the time from 4:30-6AM) in our bed. Thursday was a little rough, behavior wise, but I knew it would be. He went into a complete meltdown/rage after his McQueen was getting beat in his tablet game. Once I took it away, he slammed doors, shouted unkind rote phrases, and became very aggressive (hitting, attempting to kick, etc). I had a friend over, so I'm not sure if it escalated because he wasn't getting my attention, but I had to put him in the "safe room;" he hasn't been in there for a long time.
When it was time to pick up Peyton, he refused; would not put his shoes on, sat on the couch, and didn't budge. I sat down and calmly told him that poor Peyton might be the only one left, sitting there at school, crying because he was all alone. Hunter sat for a minute, and then crying, brought me his shoes. I drove to school and was hoping to take the close spot when someone turned in at the last minute. I was already frustrated with the non-compliance, so parking far away with a child who was refusing to walk on his own made me upset. But God had other plans for my parking spot...we ended up next to a little prayer shrine in the woods by the school. On the way back to the car, Peyton walked down the path, and said, "There's a picture of Mary and Jesus in there!" It was a picture of Our Lady of Schoenstatt- I wasn't familiar with the name, so I googled it when we got in the car, and this was part of the story...
"The heart is the innermost center of the spiritual life of a person." (Pope Paul VI). The human heart is the most precious of all the gifts which Mary wishes to give her son. Mary draws us to give our hearts to Him.
I had to email my friend who I had chatted with that afternoon, for we had told stories of difficult times, and we both shared in our amazement of perfect moments. I have given all of my heart to Hunter, and in turn, I have given my heart to Him. He is guiding our destiny according to his plan made with that same love.
Hunter woke Friday in a great mood, and I had told him we were going to go to the school office for testing. The diagnostician had called me earlier in the week and said she had tried to pull Hunter for his three-year-re-eval testing, but he was obviously out in IVIG. I offered to take him in to her office on Friday, since he was not going to school; my rationale at the time was that he was doing so well (prior to the one episode), he might do better testing on a no-school day than being pulled out of class.
Looking back on it now, I don't really know what I was thinking. He just went through four days of IVIG. His body obviously was affected from the procedure. He didn't sleep well Wednesday night, and all you parents know the second day after no sleep always seems to be the worst. I was bringing him into an unfamiliar environment.
What in the world was I thinking???
He was non-compliant from the moment we walked in the door. He was aggressive, yelled, screamed, hit...it was disaster. I knew that I had to have him be somewhat successful before leaving, or all of that behavior would have "saved" him from testing. So I sat in her office, held his flailing arms and legs, until he was compliant.
He ended up telling me to go to the waiting room, and he worked for about thirty minutes. She came out and told me they only were able to complete a few subtests, and she would try and pull him again at school. "Or," she said, "we don't have to do the formal testing. We can mark untestable/attempted for this section."
Absolute wrong thing to say to me.
As calmly and as sweetly as I could, I told her he was most certainly testable and that I should have called to reschedule after we had the no-sleep night.
He is difficult, he is hard, he is a pain-in-the-neck sometimes,,, but he is most definitely testable.
If we had ever given up on Hunter after one attempt, he would be nowhere close to his level today. If I cancelled every therapist that had tried to work with him when he answered with non-compliance, we wouldn't have learned how to handle his rages. If we had stopped searching for a doctor who believed in our story, believed in medical intervention, and wanted to treat him, we would be back at square one in the pediatrician's office, wondering what our life would look like ten years down the road with a stronger, taller, more aggressive child. If we had stopped fighting for IVIG coverage with every denial, we would be in a massive amount of debt.
Special needs children, or anyone for that matter, are not to be given the "once and done" attempt.
We cannot,
EVER,
give up on these kids.
So don't ever tell me the game is over before you have done your last rally. Don't tell me you will fill in an N/A for ANY check box. You may only write the word "attempted" if you truly have done so...
and once is not enough for this mama bear.
When it was time to pick up Peyton, he refused; would not put his shoes on, sat on the couch, and didn't budge. I sat down and calmly told him that poor Peyton might be the only one left, sitting there at school, crying because he was all alone. Hunter sat for a minute, and then crying, brought me his shoes. I drove to school and was hoping to take the close spot when someone turned in at the last minute. I was already frustrated with the non-compliance, so parking far away with a child who was refusing to walk on his own made me upset. But God had other plans for my parking spot...we ended up next to a little prayer shrine in the woods by the school. On the way back to the car, Peyton walked down the path, and said, "There's a picture of Mary and Jesus in there!" It was a picture of Our Lady of Schoenstatt- I wasn't familiar with the name, so I googled it when we got in the car, and this was part of the story...
"The heart is the innermost center of the spiritual life of a person." (Pope Paul VI). The human heart is the most precious of all the gifts which Mary wishes to give her son. Mary draws us to give our hearts to Him.
Father Kentenich wrote, "Keep your place in the heart of Our Lady. You belong there whatever happens. There you will find peace, security and confidence in the victory in every circumstance and in every instance. Do good where the opportunity arises, and see a kind Father-hand in everything. He guides your destiny according to His wise plan of love."
I had to email my friend who I had chatted with that afternoon, for we had told stories of difficult times, and we both shared in our amazement of perfect moments. I have given all of my heart to Hunter, and in turn, I have given my heart to Him. He is guiding our destiny according to his plan made with that same love.
Hunter woke Friday in a great mood, and I had told him we were going to go to the school office for testing. The diagnostician had called me earlier in the week and said she had tried to pull Hunter for his three-year-re-eval testing, but he was obviously out in IVIG. I offered to take him in to her office on Friday, since he was not going to school; my rationale at the time was that he was doing so well (prior to the one episode), he might do better testing on a no-school day than being pulled out of class.
Looking back on it now, I don't really know what I was thinking. He just went through four days of IVIG. His body obviously was affected from the procedure. He didn't sleep well Wednesday night, and all you parents know the second day after no sleep always seems to be the worst. I was bringing him into an unfamiliar environment.
What in the world was I thinking???
He was non-compliant from the moment we walked in the door. He was aggressive, yelled, screamed, hit...it was disaster. I knew that I had to have him be somewhat successful before leaving, or all of that behavior would have "saved" him from testing. So I sat in her office, held his flailing arms and legs, until he was compliant.
He ended up telling me to go to the waiting room, and he worked for about thirty minutes. She came out and told me they only were able to complete a few subtests, and she would try and pull him again at school. "Or," she said, "we don't have to do the formal testing. We can mark untestable/attempted for this section."
Absolute wrong thing to say to me.
As calmly and as sweetly as I could, I told her he was most certainly testable and that I should have called to reschedule after we had the no-sleep night.
He is difficult, he is hard, he is a pain-in-the-neck sometimes,,, but he is most definitely testable.
If we had ever given up on Hunter after one attempt, he would be nowhere close to his level today. If I cancelled every therapist that had tried to work with him when he answered with non-compliance, we wouldn't have learned how to handle his rages. If we had stopped searching for a doctor who believed in our story, believed in medical intervention, and wanted to treat him, we would be back at square one in the pediatrician's office, wondering what our life would look like ten years down the road with a stronger, taller, more aggressive child. If we had stopped fighting for IVIG coverage with every denial, we would be in a massive amount of debt.
Special needs children, or anyone for that matter, are not to be given the "once and done" attempt.
We cannot,
EVER,
give up on these kids.
So don't ever tell me the game is over before you have done your last rally. Don't tell me you will fill in an N/A for ANY check box. You may only write the word "attempted" if you truly have done so...
and once is not enough for this mama bear.
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