reading 28 pages of what is wrong with your child
Hunter has had a rough transition back to school this week after IVIG #9. I guess I was naive, but I thought he would have a rockstar day on Monday. He had zero problems after being off for two weeks a Christmas. What would a little IVIG week do?
His classroom teacher sunk my heart yesterday when she told me, "He just hasn't been himself this week." Those are the words I dread to hear after completing an intense medical procedure, one that caused us so much anxiety in the moment. He had a great weekend at home, so I really was shocked to hear that comment. His assistant principal had called me as well, and told me that he had attempted to run from the playground into the street at recess. She was able to get him to come back, however, now I wasn't just worried about his medical state, but his safety as well.
He had become upset because a friend hadn't given him his turn on the swing. "Mommy, I counted to 100 like I was supposed to but he still wouldn't give me my turn!"
We had a little pillow talk the night before, when I had asked him who he had played with on the playground. He told me he played by himself, because everyone wanted to run on the field, and he "only liked to play on the playground." Even his little buddy from the beginning of the year had joined the big boys on the field, leaving Hunter to play "birds nest" by himself. He told me he wanted to play with 'L,' but L's best buddy was 'A.'
My heart was breaking that night. He now gets that children exclude him, run away from him, and generally don't include him. It just seems so unfair that my once neurotypical boy is being held inside this Autism cloud that prevents him from developing normal relationships.
I see boys throwing the football on the playground, and I can't help but feel sad. Will he ever, ever be a part of "that group?"
I received a copy of his three-year re-evaluation yesterday. I skimmed it last night, but as I was falling asleep from exhaustion, I decided to wait and read it with a fresh brain in the morning.
And with each page, my heart continued to sink.
You are given this child, this amazing gift from God, and you have to read twenty-eight pages of what is wrong with YOUR son.
There were, of course, the listed strengths...but every single strength was trumped by the difficulties evidenced by Hunter.
"He wants friends, but doesn't seem know how to make them or keep them."
"Hunter does not respect authority."
"...biggest concern is his violent, unpredictable behavior."
"Peers give into him because they have witnessed his screaming, yelling, and violent hitting."
"...his unwillingness to perform academically when he is capable of the work."
"With regard to relationships, at school he gets along with some peers, but is disliked by others."
"difficulty concentrating, easy distractibility, disorganization, impulsivity, trouble staying seated, interrupting others, fidgety, trouble being quiet, talks excessively..."
"...he attempted to hit and kick the observer."
"He is argumentative, defies requests from adults and has poor control of anger."
"He is physically aggressive and violent at times."
"He is socially awkward, shy, and has difficulty with friendships and social connections."
"Hunter occasionally feels helpless and hopeless."
And with each paragraph, each bullet point that dug it in a little deeper, each suggested diagnosis like Oppositional Defiant Disorder, Obsessive Compulsive Disorder, Attention Deficit Hyperactivity Disorder, and Generalized Anxiety Disorder, I felt like a fool for thinking that IVIG was recovering our sweet boy.
Have I really been this blind? Thinking that recovery truly is possible?
Or have I just wanted it so, so badly, that I have been ignoring the reality of the situation?
My only saving grace is remembering that all of those above statements used to occur around the clock. We used to sit around at night and pray so hard that we would find an answer to help us escape the nightmare that had entered our lives.
It sucks.
I can't find a gentler, more polite way to say it.
I want to take this evaluation and stick it through the shredder.
When I talked about the cycles of grief in posts earlier, I mentioned that grief is cyclical.
When you have a life-changing event occur, like Autism, you can't turn off the emotional side of this fight.
You become angry all over again. You are mad at physicians, the world, God...you want to just scream and shake your fists until someone tells you, "Yes. It is truly unfair."
You want to give up. You want to throw your hands in the air and just let it all go.
You are sad. You yearn for the life that everyone else is living. You think about that "perfect" family you saw in church on Sunday, with a "perfect" mom and dad, and three "perfect" girls in smocked dresses and bows in their hair.
You are in denial. This can't be about MY son. My son wouldn't do these things! My son has friends!
He does, doesn't he?
But then you realize that the world is NOT perfect. Everyone is fighting a battle that you know nothing about.
We have just been chosen to fight a really difficult one.
So even though I have a lengthy document, in black and white, describing everything that is wrong...
or went wrong,
with our son,
when we felt like we were doing everything right...
I have to just pray. Pray that the best is still yet to come. Pray that we can maintain the resilience we need to continue to fight this devastating, depressing disorder known as Autism.
Last night, I opened my daily devotional, something I hadn't done in several nights. God was calling me.
"TRUST is a golden pathway to Heaven. When you walk on this path, you live above your circumstances. My glorious light shines more brightly on those who follow this path of Life. Dare to walk on the high road with Me, for it is the most direct route to heaven. The low road is circuitous: twisting and turning in agonizing knots. There the air hangs heavy, and dark, ominous clouds predominate. Relying on your own understanding will weigh you down. TRUST in me absolutely, and I will make your path straight."
My word for 2015 is weak at this point.
I need to take the high road to avoid those dark rain clouds.
Praying for sunshine, rainbows,
anything,
that will tell me it will all be OK and we are headed in the right direction.
There was one bullet point that stuck out to me, and has to remain at the top of the list:
"According to his mother, he demonstrates heart, strength, and determination."
More than anyone I know.
I Won't Give Up- Jason Mraz
http://youtu.be/ZYqcpTYQ8I4
When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
Well, there's so much they hold
And just like them old stars
I see that you've come so far
To be right where you are
How old is your soul?
Well, I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up
And when you're needing your space
To do some navigating
I'll be here patiently waiting
To see what you find
'Cause even the stars they burn
Some even fall to the earth
We've got a lot to learn
God knows we're worth it
No, I won't give up
I don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got, yeah, we got a lot at stake
And in the end, you're still my friend at least we did intend
For us to work we didn't break, we didn't burn
We had to learn how to bend without the world caving in
I had to learn what I've got, and what I'm not, and who I am
I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up, still looking up.
Well, I won't give up on us (no I'm not giving up)
God knows I'm tough enough (I am tough, I am loved)
We've got a lot to learn (we're alive, we are loved)
God knows we're worth it (and we're worth it)
I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up
His classroom teacher sunk my heart yesterday when she told me, "He just hasn't been himself this week." Those are the words I dread to hear after completing an intense medical procedure, one that caused us so much anxiety in the moment. He had a great weekend at home, so I really was shocked to hear that comment. His assistant principal had called me as well, and told me that he had attempted to run from the playground into the street at recess. She was able to get him to come back, however, now I wasn't just worried about his medical state, but his safety as well.
He had become upset because a friend hadn't given him his turn on the swing. "Mommy, I counted to 100 like I was supposed to but he still wouldn't give me my turn!"
We had a little pillow talk the night before, when I had asked him who he had played with on the playground. He told me he played by himself, because everyone wanted to run on the field, and he "only liked to play on the playground." Even his little buddy from the beginning of the year had joined the big boys on the field, leaving Hunter to play "birds nest" by himself. He told me he wanted to play with 'L,' but L's best buddy was 'A.'
My heart was breaking that night. He now gets that children exclude him, run away from him, and generally don't include him. It just seems so unfair that my once neurotypical boy is being held inside this Autism cloud that prevents him from developing normal relationships.
I see boys throwing the football on the playground, and I can't help but feel sad. Will he ever, ever be a part of "that group?"
I received a copy of his three-year re-evaluation yesterday. I skimmed it last night, but as I was falling asleep from exhaustion, I decided to wait and read it with a fresh brain in the morning.
And with each page, my heart continued to sink.
You are given this child, this amazing gift from God, and you have to read twenty-eight pages of what is wrong with YOUR son.
There were, of course, the listed strengths...but every single strength was trumped by the difficulties evidenced by Hunter.
"He wants friends, but doesn't seem know how to make them or keep them."
"Hunter does not respect authority."
"...biggest concern is his violent, unpredictable behavior."
"Peers give into him because they have witnessed his screaming, yelling, and violent hitting."
"...his unwillingness to perform academically when he is capable of the work."
"With regard to relationships, at school he gets along with some peers, but is disliked by others."
"difficulty concentrating, easy distractibility, disorganization, impulsivity, trouble staying seated, interrupting others, fidgety, trouble being quiet, talks excessively..."
"...he attempted to hit and kick the observer."
"He is argumentative, defies requests from adults and has poor control of anger."
"He is physically aggressive and violent at times."
"He is socially awkward, shy, and has difficulty with friendships and social connections."
"Hunter occasionally feels helpless and hopeless."
And with each paragraph, each bullet point that dug it in a little deeper, each suggested diagnosis like Oppositional Defiant Disorder, Obsessive Compulsive Disorder, Attention Deficit Hyperactivity Disorder, and Generalized Anxiety Disorder, I felt like a fool for thinking that IVIG was recovering our sweet boy.
Have I really been this blind? Thinking that recovery truly is possible?
Or have I just wanted it so, so badly, that I have been ignoring the reality of the situation?
My only saving grace is remembering that all of those above statements used to occur around the clock. We used to sit around at night and pray so hard that we would find an answer to help us escape the nightmare that had entered our lives.
It sucks.
I can't find a gentler, more polite way to say it.
I want to take this evaluation and stick it through the shredder.
When I talked about the cycles of grief in posts earlier, I mentioned that grief is cyclical.
When you have a life-changing event occur, like Autism, you can't turn off the emotional side of this fight.
You become angry all over again. You are mad at physicians, the world, God...you want to just scream and shake your fists until someone tells you, "Yes. It is truly unfair."
You want to give up. You want to throw your hands in the air and just let it all go.
You are sad. You yearn for the life that everyone else is living. You think about that "perfect" family you saw in church on Sunday, with a "perfect" mom and dad, and three "perfect" girls in smocked dresses and bows in their hair.
You are in denial. This can't be about MY son. My son wouldn't do these things! My son has friends!
He does, doesn't he?
But then you realize that the world is NOT perfect. Everyone is fighting a battle that you know nothing about.
We have just been chosen to fight a really difficult one.
So even though I have a lengthy document, in black and white, describing everything that is wrong...
or went wrong,
with our son,
when we felt like we were doing everything right...
I have to just pray. Pray that the best is still yet to come. Pray that we can maintain the resilience we need to continue to fight this devastating, depressing disorder known as Autism.
Last night, I opened my daily devotional, something I hadn't done in several nights. God was calling me.
"TRUST is a golden pathway to Heaven. When you walk on this path, you live above your circumstances. My glorious light shines more brightly on those who follow this path of Life. Dare to walk on the high road with Me, for it is the most direct route to heaven. The low road is circuitous: twisting and turning in agonizing knots. There the air hangs heavy, and dark, ominous clouds predominate. Relying on your own understanding will weigh you down. TRUST in me absolutely, and I will make your path straight."
My word for 2015 is weak at this point.
I need to take the high road to avoid those dark rain clouds.
Praying for sunshine, rainbows,
anything,
that will tell me it will all be OK and we are headed in the right direction.
There was one bullet point that stuck out to me, and has to remain at the top of the list:
"According to his mother, he demonstrates heart, strength, and determination."
More than anyone I know.
I Won't Give Up- Jason Mraz
http://youtu.be/ZYqcpTYQ8I4
When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
Well, there's so much they hold
And just like them old stars
I see that you've come so far
To be right where you are
How old is your soul?
Well, I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up
And when you're needing your space
To do some navigating
I'll be here patiently waiting
To see what you find
'Cause even the stars they burn
Some even fall to the earth
We've got a lot to learn
God knows we're worth it
No, I won't give up
I don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got, yeah, we got a lot at stake
And in the end, you're still my friend at least we did intend
For us to work we didn't break, we didn't burn
We had to learn how to bend without the world caving in
I had to learn what I've got, and what I'm not, and who I am
I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up, still looking up.
Well, I won't give up on us (no I'm not giving up)
God knows I'm tough enough (I am tough, I am loved)
We've got a lot to learn (we're alive, we are loved)
God knows we're worth it (and we're worth it)
I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up
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