"Thank God It's Not Autism"
This week I can play catch-up- because it's IVIG week! Can you believe we have entered into IVIG #19?? It has taken 19 needle sticks (well, plus a few more when they couldn't get the IV in the first time) for Hunter to sit and not scream, kick, or flinch. The nurse was shocked and shaking, and praised Hunter for his compliance. Last night, I was reviewing the day with Hunter at bedtime and I asked how he knew that Nurse Jill was proud of him. "She hugged me! I didn't know that a nurse could hug me!?!?!"
Hunter has had a few weeks of difficulty. Paige fell off her ripstick and fractured her elbow the first week of January. Then, at Paige's 4th grade performance (where Hunter left me to go and sit with his friends- amazing!)
, he decided he wanted to do "karate and I hi-ya'd off of the bleachers" and it left him with a sprained foot. He had a horrible day the next day at school (very weepy, non-compliant), and we ended up taking him for x-rays the next week. He was raging for 4 hours in the middle of the night the first weekend after he got hurt, and we knew we were in for a drastic change. He decided he was done with his foot brace about a week-post and miraculously, his behavior shifted back to normal. His body just can't handle inflammation of any type.
So fast forward to today, when he just sang "The Woods" with me in a round, and completed 7 pages of homework prior to watching any movies at IVIG. We were able to witness his poetry presentation at school, where he recited a memorized poem with amazing inflection and intonation. He used props and had the crowd laughing. We, of course, smiled and laughed through the happy tears. The courage it takes for anyone to get up in front of a room full of peers and parents, and then you add a child with increased anxiety and social awkwardness, and he stole the show. I'll attach the video for your viewing pleasure- and we didn't include the 3 minutes of eternity that followed of a Lighting McQueen monologue. We cued him with waving arms and subtle verbal hints to cut the presentation. :)
If things are going so well, then I'm sure you're wondering where the title of this blog post generated. Let me explain the situation.
A good friend who I used to work with lost her mother a few weeks ago. As unfortunate and sad as the funeral could be, it was a mini reunion for us and for several of our co-workers. We had an amazing team of professionals in my first school district, and we became very close as we worked through tough cases, long hours, and the difficulties this job brings when evaluating and treating children with special needs.
One of my immediate partners shared a story with all of us. They had just evaluated two twins, and the main point of her narrative included the fact that this mother was 52 years old. We all sort of groaned at the prospect of having two year old twins at 52 years of age. Myself included.
However, I wasn't prepared for the comment that followed. One of my other roommates asked, "So were the boys OK when you evaluated them?"
My co-worker, my immediate partner, my mentor my first year in the district, said with much expression, "Oh, they didn't have Autism, THANK GOD."
THANK GOD.
My heart froze, and unfortunately, so did my advocating.
Instead of standing up for what I fight daily for, I fumbled as I searched for my keys in my purse, and said, "Well, I have to get back to my family, I'm late for Paige's soccer game. So good to see you all."
And I left.
So many retorts came to mind as I sat balling in my car. Might have uttered a few profanities. But the one thing I truly wish I could have and would have said...
"Would her life have been that bad?"
We carelessly say, "Thank God..." for so many indiscriminate events in our life.
Thank God the traffic was light.
Thank God I didn't run out of eggs for that recipe.
Thank God it wasn't raining on our trip.
Thank God I found the keys I was missing.
When truly, are we thanking God for avoiding misfortune, when we should be thanking him instead for the incredible, valuable blessings he has provided in this life?
So if I could go back to that afternoon when I didn't stand up for my life, the life so many special needs families share of the loneliness that often ensues in the midst of careless comments, would I have made a difference?
Probably not. But I do know that somehow, somewhere, that comment will make me fight harder for this life that I constantly DO thank God for. Every day is not easy, but it is OURS.
And I thank God for choosing me.
Hunter has had a few weeks of difficulty. Paige fell off her ripstick and fractured her elbow the first week of January. Then, at Paige's 4th grade performance (where Hunter left me to go and sit with his friends- amazing!), he decided he wanted to do "karate and I hi-ya'd off of the bleachers" and it left him with a sprained foot. He had a horrible day the next day at school (very weepy, non-compliant), and we ended up taking him for x-rays the next week. He was raging for 4 hours in the middle of the night the first weekend after he got hurt, and we knew we were in for a drastic change. He decided he was done with his foot brace about a week-post and miraculously, his behavior shifted back to normal. His body just can't handle inflammation of any type.
So fast forward to today, when he just sang "The Woods" with me in a round, and completed 7 pages of homework prior to watching any movies at IVIG. We were able to witness his poetry presentation at school, where he recited a memorized poem with amazing inflection and intonation. He used props and had the crowd laughing. We, of course, smiled and laughed through the happy tears. The courage it takes for anyone to get up in front of a room full of peers and parents, and then you add a child with increased anxiety and social awkwardness, and he stole the show. I'll attach the video for your viewing pleasure- and we didn't include the 3 minutes of eternity that followed of a Lighting McQueen monologue. We cued him with waving arms and subtle verbal hints to cut the presentation. :)
If things are going so well, then I'm sure you're wondering where the title of this blog post generated. Let me explain the situation.
A good friend who I used to work with lost her mother a few weeks ago. As unfortunate and sad as the funeral could be, it was a mini reunion for us and for several of our co-workers. We had an amazing team of professionals in my first school district, and we became very close as we worked through tough cases, long hours, and the difficulties this job brings when evaluating and treating children with special needs.
One of my immediate partners shared a story with all of us. They had just evaluated two twins, and the main point of her narrative included the fact that this mother was 52 years old. We all sort of groaned at the prospect of having two year old twins at 52 years of age. Myself included.
However, I wasn't prepared for the comment that followed. One of my other roommates asked, "So were the boys OK when you evaluated them?"
My co-worker, my immediate partner, my mentor my first year in the district, said with much expression, "Oh, they didn't have Autism, THANK GOD."
THANK GOD.
My heart froze, and unfortunately, so did my advocating.
Instead of standing up for what I fight daily for, I fumbled as I searched for my keys in my purse, and said, "Well, I have to get back to my family, I'm late for Paige's soccer game. So good to see you all."
And I left.
So many retorts came to mind as I sat balling in my car. Might have uttered a few profanities. But the one thing I truly wish I could have and would have said...
"Would her life have been that bad?"
We carelessly say, "Thank God..." for so many indiscriminate events in our life.
Thank God the traffic was light.
Thank God I didn't run out of eggs for that recipe.
Thank God it wasn't raining on our trip.
Thank God I found the keys I was missing.
When truly, are we thanking God for avoiding misfortune, when we should be thanking him instead for the incredible, valuable blessings he has provided in this life?
So if I could go back to that afternoon when I didn't stand up for my life, the life so many special needs families share of the loneliness that often ensues in the midst of careless comments, would I have made a difference?
Probably not. But I do know that somehow, somewhere, that comment will make me fight harder for this life that I constantly DO thank God for. Every day is not easy, but it is OURS.
And I thank God for choosing me.
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