graduation- and accepting milestones
Hunter has been practicing for two weeks for their graduation ceremony. His teachers, the aides, and the director all have told me what a great job he did in practice. He sang the songs, did the motions, and practiced walking across the stage.
We had high hopes for today's ceremony. We wrote schedules and told social stories. When we arrived at school today, super early to secure a front row to encourage Hunter to stay with his friends, his teacher told me that he ran off of the stage today during their last practice. She wanted to warn me that he might not participate.
The music started, and the kids assembled into the hall. Hunter's class was last; I saw all of his friends walk by, but then there was a break in the line- and I knew Hunter had either stalled or darted. Peter went to the back and held his hand to walk him to our seats.
He sat with us while all of his friends sang their songs, and began to get agitated when the picture video started, again with an amplified sound system. We took him out to watch the slide show through the doors, and then sat in our seats to wait for his name to be called. The clapping, the commotion, and cheers all had Hunter as edgy as ever. He whined, "I want to go home!" I encouraged him to get his diploma and then rejoin me at the seat. He was one of the last names called...
"Hunter!"
He immediately stood up and walked to get his diploma. He shook the teachers' hands and quickly walked back to sit on our laps. I gave him a high five, and then he stood (next to us) to sing their last song- "Our God is an Awesome God."
The lyrics are below...
Our God is an awesome God
He reigns from heaven above
With wisdom, power and love
Our God is an awesome God
He did an amazing job singing the words, and doing all the actions. However, his agitation increased as the children began to get excited, a little louder, and everyone started to file back to their classrooms. Taking pictures was a challenge-
When we got home, I received a phone call from an advocate that has been working closely with me on Hunter's medication approval process.
She told me our initial request for subsequent IVIG treatments had been denied.
Now we start the appeal process, with our dr's office submitting documentation to prove that IVIG worked and that it is deemed medically necessary.
Graduation from pre-k is supposed to be a happy, joyous occasion. It was for all of the other children in the room. Even another little boy, who I know has Autism, stood up with his class, walked to get his diploma, and hugged his teacher as he smiled for a picture.
To Hunter, graduation meant a loud, chaotic, agitation-filled circus of an event that just needed to end.
We are so proud of the fact that he walked up to get his diploma...but as he stood next to us, singing every word to "Our God is an Awesome God," I struggled to find the awesomeness in this disorder.
I'm not sure when these milestones will get easier. I don't know if I will be able to erase the negative, angry thoughts in my head when I see happy families celebrating these experiences. For some reason, the "why" could not escape my every thought.
My pediatrician had called me last week and left me a message about another patient of hers- she said that this child's symptoms mimicked Hunter's and he was also diagnosed with Autism. The mother had questions about PANDAS and our doctor wanted to know if she could pass along my contact information to this family.
Yesterday, my employer encouraged me to prepare a presentation and submit it for continuing education credit for my colleagues on the topics of Autism and ABA vs. Speech therapy, with my parent perspective.
A friend contacted me recently to help her with a GF diet, as she found out her child has Celiac Disease, and wanted to know any tips, recipes, or products that we have found to be favorites.
I can see God using me in many situations, but it is still hard to understand. I just want to be fully present at milestone events and not have my mind wander to questioning the ultimate plan.
I don't get angry with my friends and family for their own celebrations- oh, how I want to rejoice in happy times right along with them!! I love hearing positive stories and being part of momentous occasions!
I get angry that we are not able to enjoy the carefree smiles, pictures, and laughs that I witnessed today.
I just want for once to be truly, truly engaged in a moment without having to deal with Autism.
I haven't seen squinty smiley eyes since starting IVIG, and today, they were back. Full force. 7 weeks post IVIG.
I would love to take those people sitting at desks in insurance review offices and bring them to our house, to let them into our lives, for even just part of a day. I would love to show them the pictures of this little boy and the videos prior to the illness that took so much from us...and ask them if they really could attach a dollar sign to bringing our boy back. As much as I felt for the families I treated prior to having children of my own, I didn't ever get it until I lived it. I don't think anyone really does.
So to all of my insurance reviewers out there who look at papers, with certain diagnostic codes, and try to determine if it is worth it, if they can approve the payment, if they can justify the treatment...
it is.
Because recovery is priceless.
We had high hopes for today's ceremony. We wrote schedules and told social stories. When we arrived at school today, super early to secure a front row to encourage Hunter to stay with his friends, his teacher told me that he ran off of the stage today during their last practice. She wanted to warn me that he might not participate.
The music started, and the kids assembled into the hall. Hunter's class was last; I saw all of his friends walk by, but then there was a break in the line- and I knew Hunter had either stalled or darted. Peter went to the back and held his hand to walk him to our seats.
 |
| sleepy little peyton...ready to go to bed! |
 |
| hunter's classmates |
He sat with us while all of his friends sang their songs, and began to get agitated when the picture video started, again with an amplified sound system. We took him out to watch the slide show through the doors, and then sat in our seats to wait for his name to be called. The clapping, the commotion, and cheers all had Hunter as edgy as ever. He whined, "I want to go home!" I encouraged him to get his diploma and then rejoin me at the seat. He was one of the last names called..."Hunter!"
He immediately stood up and walked to get his diploma. He shook the teachers' hands and quickly walked back to sit on our laps. I gave him a high five, and then he stood (next to us) to sing their last song- "Our God is an Awesome God."
The lyrics are below...
Our God is an awesome God
He reigns from heaven above
With wisdom, power and love
Our God is an awesome God
He did an amazing job singing the words, and doing all the actions. However, his agitation increased as the children began to get excited, a little louder, and everyone started to file back to their classrooms. Taking pictures was a challenge-
When we got home, I received a phone call from an advocate that has been working closely with me on Hunter's medication approval process.
She told me our initial request for subsequent IVIG treatments had been denied.
Now we start the appeal process, with our dr's office submitting documentation to prove that IVIG worked and that it is deemed medically necessary.
Graduation from pre-k is supposed to be a happy, joyous occasion. It was for all of the other children in the room. Even another little boy, who I know has Autism, stood up with his class, walked to get his diploma, and hugged his teacher as he smiled for a picture.
To Hunter, graduation meant a loud, chaotic, agitation-filled circus of an event that just needed to end.
We are so proud of the fact that he walked up to get his diploma...but as he stood next to us, singing every word to "Our God is an Awesome God," I struggled to find the awesomeness in this disorder.
I'm not sure when these milestones will get easier. I don't know if I will be able to erase the negative, angry thoughts in my head when I see happy families celebrating these experiences. For some reason, the "why" could not escape my every thought.
My pediatrician had called me last week and left me a message about another patient of hers- she said that this child's symptoms mimicked Hunter's and he was also diagnosed with Autism. The mother had questions about PANDAS and our doctor wanted to know if she could pass along my contact information to this family.
Yesterday, my employer encouraged me to prepare a presentation and submit it for continuing education credit for my colleagues on the topics of Autism and ABA vs. Speech therapy, with my parent perspective.
A friend contacted me recently to help her with a GF diet, as she found out her child has Celiac Disease, and wanted to know any tips, recipes, or products that we have found to be favorites.
I can see God using me in many situations, but it is still hard to understand. I just want to be fully present at milestone events and not have my mind wander to questioning the ultimate plan.
I don't get angry with my friends and family for their own celebrations- oh, how I want to rejoice in happy times right along with them!! I love hearing positive stories and being part of momentous occasions!
I get angry that we are not able to enjoy the carefree smiles, pictures, and laughs that I witnessed today.
I just want for once to be truly, truly engaged in a moment without having to deal with Autism.
I haven't seen squinty smiley eyes since starting IVIG, and today, they were back. Full force. 7 weeks post IVIG.
I would love to take those people sitting at desks in insurance review offices and bring them to our house, to let them into our lives, for even just part of a day. I would love to show them the pictures of this little boy and the videos prior to the illness that took so much from us...and ask them if they really could attach a dollar sign to bringing our boy back. As much as I felt for the families I treated prior to having children of my own, I didn't ever get it until I lived it. I don't think anyone really does.
So to all of my insurance reviewers out there who look at papers, with certain diagnostic codes, and try to determine if it is worth it, if they can approve the payment, if they can justify the treatment...
it is.
Because recovery is priceless.
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