September 18, 2013. I sent the Good Doctor to the pediatric ophthalmologist with Victor that day. He called me on the way home,
"The doctor says Victor is completely blind."
I never did like that doctor but I'm not sure if it's him or his message.
But here we are, 3 years later.
That doctor didn't know the power of prayer because around 1 year of age he showed signs of light perception and a year later he held a book to his face and told me which one it was.
And then we learned that blindness was the least of his troubles.
So now we pray for breakthrough in behavioral issues. And while the day-in-and-day-out is wearying and looks like we've made no progress, we have.
When he chooses to to bang his foot rather than his head, we've made progress.
When he responds to someone's hello not with a yell but with a quiet and polite, "I really don't want to talk right now," we've made progress.
When he allows us to comfort him after a fall rather than hitting us and yelling, we've made progress.
When he says, "Yes, Mommy," and follows through with my request rather than defiance, we've made progress.
We are exceedingly thankful for the number of wonderful people who have come into our lives because of Victor. And on my good days, I'm thankful for the lessons I am learning through Victor's diagnosis. Love, grace, joy, patience, and compassion have all been cultivated in this journey as has empathy for others walking a similar journey. And if this is what it takes for me to become more like Jesus, then this is the path I will walk.
Happy Diagnosis Day, everyone!
Sunday, September 18, 2016
Tuesday, September 6, 2016
Pretty School
Well, if you were looking for an update on Victor's first morning at pretty school, here it is...
He survived. And so did I (but barely). Team Victor was missing only his OT (and that was because we decided that we didn't need one more person in the room today).
Arrival was shaky. we decided to skip the putting the backpack on the hook part of the routine. Not happening.
And who was worried about whether or not he'd use the potty at preschool? (Me.) Within the first five minutes, everyone in the room knew that Victor was headed for the potty. Success. Publicly.
But it's not as if all of their eyes and ears weren't already on him because his entrance at the end of circle time was an entertaining one. There was going to be no Victor in that compliant circle-sitting group. And he let it be known by not just a little bit of yelling and head banging and floor rolling.
Free play found him throwing little colored glass beads (from the light table - no surprise that this is the first object that caught his eye) and swiping the whole basket of crayons right off the table (my apologies to the little girl from our church - and her parents - who saw the whole crayon episode and looked at me with horror). Oh, and sneaking a bit of play-doh down the hatch.
He told his TVI to shut up and when she told him that it hurts her heart when he says that, he whispered it. Maybe words can only hurt when they are spoken loudly?
Sensory and anxiety and frustration overload came at snack clean-up when he was a bit confused about where to put his cup (dish pan) and napkin (trash can). So, he and his behavioral specialist spent a few minutes in the cubbies (where Victor ended up) while Victor yelled and rolled and banged his head. Out in the main area, the rest of Team Victor decided that I would just take him home when he was done but after 7 minutes (yes, we counted), he sat up and nicely placed his things where they belonged and announced that he was going to join the rest of the children on the playground. So we did.
And there were some glimmers of hope.
After the throwing incident at the light table, Victor decided to play McDonald's with me. I was able to get him to play McDonald's with the other child and student teacher who were also there. The other little girl was a beautiful example of the graciousness of children; she didn't miss a beat and ordered herself some McDonald's chicken which Victor happily supplied to her.
He joined a few children at the housekeeping area. Of course he then picked up a pretend pot and banged it on the table. Then another child joined in. Who says Victor isn't a leader? They'll all be accomplished drummers by the end of the school year.
He voluntarily joined the line-up for pre-snack hand-washing, found an empty chair on his own, and sat down nicely for all of snack. At this point all of Team Victor was a bit misty-eyed.
And he had a lovely time on the playground.
On the way home, when there were a few tears shed (mine) he told me to calm down and take some deep breaths.
Funny, that's what I used to tell him in the NICU.
And tomorrow we get to do it all again.
He survived. And so did I (but barely). Team Victor was missing only his OT (and that was because we decided that we didn't need one more person in the room today).
Arrival was shaky. we decided to skip the putting the backpack on the hook part of the routine. Not happening.
And who was worried about whether or not he'd use the potty at preschool? (Me.) Within the first five minutes, everyone in the room knew that Victor was headed for the potty. Success. Publicly.
But it's not as if all of their eyes and ears weren't already on him because his entrance at the end of circle time was an entertaining one. There was going to be no Victor in that compliant circle-sitting group. And he let it be known by not just a little bit of yelling and head banging and floor rolling.
Free play found him throwing little colored glass beads (from the light table - no surprise that this is the first object that caught his eye) and swiping the whole basket of crayons right off the table (my apologies to the little girl from our church - and her parents - who saw the whole crayon episode and looked at me with horror). Oh, and sneaking a bit of play-doh down the hatch.
He told his TVI to shut up and when she told him that it hurts her heart when he says that, he whispered it. Maybe words can only hurt when they are spoken loudly?
Sensory and anxiety and frustration overload came at snack clean-up when he was a bit confused about where to put his cup (dish pan) and napkin (trash can). So, he and his behavioral specialist spent a few minutes in the cubbies (where Victor ended up) while Victor yelled and rolled and banged his head. Out in the main area, the rest of Team Victor decided that I would just take him home when he was done but after 7 minutes (yes, we counted), he sat up and nicely placed his things where they belonged and announced that he was going to join the rest of the children on the playground. So we did.
And there were some glimmers of hope.
After the throwing incident at the light table, Victor decided to play McDonald's with me. I was able to get him to play McDonald's with the other child and student teacher who were also there. The other little girl was a beautiful example of the graciousness of children; she didn't miss a beat and ordered herself some McDonald's chicken which Victor happily supplied to her.
He joined a few children at the housekeeping area. Of course he then picked up a pretend pot and banged it on the table. Then another child joined in. Who says Victor isn't a leader? They'll all be accomplished drummers by the end of the school year.
He voluntarily joined the line-up for pre-snack hand-washing, found an empty chair on his own, and sat down nicely for all of snack. At this point all of Team Victor was a bit misty-eyed.
And he had a lovely time on the playground.
On the way home, when there were a few tears shed (mine) he told me to calm down and take some deep breaths.
Funny, that's what I used to tell him in the NICU.
And tomorrow we get to do it all again.
Wednesday, January 20, 2016
Victor update
Victor is in bed; down for a nap. And this is a good thing. It means I have 2 hours of hopefully uninterrupted time. Time to sew or read or do laundry or make supper or - well, to do anything without Victor. And to do so without listening to Johnny Cash
Yes, without Johnny Cash. I suppose the guy's okay but listening to him all day long can be a bit too much. I blame The Good Doctor for introducing the Little Man with Black Hair to the Man in Black. Now we have to listen to him constantly, identifying when he is singing with a guitar and when he is not. When we hear drums and when we do not. And if it's a song Mr. Victor does not recognize, then I have to answer the question a hundred times or more, "Is this Johnny Cash?" Yes, Victor, don't you recognize his voice? "Is that his voice?" Yes, Victor, that is his voice. It is Johnny Cash. And Heaven forbid that youtube switch us to June Carter Cash!
Don't get me wrong. We love Victor. I love Victor. But life with Victor is unlike life with any of the other children in this house. And yes, I do know that each child is unique. But for the most part, things have been pretty cookie-cutter. And this one is just more unique than the rest.
The other children learned pretty quickly that temper tantrums would get them nowhere. And banging their own head or biting their own arm during a tantrum would hurt so they would do it once and never again. Not this child. He seems to need the release of these self-injurious behaviors. I am open to suggestions but I can tell you that ignoring, reverse psychology, offering a pillow, creating a safe and cushioned area, picking him up, snuggling him, etc. do not work. Well, the last two keep him from hurting himself but then he kicks me so not necessarily the best alternative. Unless we're in public because most other people prefer to see a child hurting his mother than hurting himself. The reaction is far better if I'm being kicked or have a bloody lip than if he is banging his own head. Go figure.
I have potty trained 6 other children at age 2 and have been successful in the process (yay, me!). Yes, 6 of 6 are completely trained. Surprised? 1 came to me trained. Child #8, however, is now on Week 39 (give or take a few weeks and breaks for my sanity) with only an average of 60% success on a daily basis. I have promised my mother, mother-in-law, and the nursery workers plenty of rewards for sending him home trained but obviously no one is taking me seriously. And so I clean the pee off the floor. Again. Happily, of course. No, not happily, but joyfully. Because we do love our Mr. Victor.
We love his smile.
And his sense of humor.
His snuggling and his hugs and kisses.
And most of all, I think I love his conversations.
He used to always tell us he had a question but would usually follow-up with a statement. So Eden told him that he should tell us he had a statement instead. So now he tells us he has a statement. Usually it's something un-profound like, I am going in the den. Great, Buddy, and have fun. But now he seems to know the difference so I'll get a conversation something like this:
Victor: Mommy, I have a question to make.
Okay, what is your question?
Victor: No, I have a statement and a question.
Okay, what is your statement?
Victor: I am going outside.
I don't think so; it's freezing outside. What is your question?
Victor: Are we going to a store?
No. Again, it's freezing outside and besides, your mother is an introvert and prefers to stay home. Is that okay?
Victor: Yes.
Whew!
He also uses this tactic to make requests.
Victor: Mommy, I have a statement.
Okay, what is it?
Victor: I am having chocolate.
No, I don't think so but good try and thank you for being polite.
And sometimes he uses our methods against us in conversation. A few months back, he was having trouble with transitions (trouble is not quite the right word here, think: all out knock-down, drag out, self-injurious bang-fest). One of his therapists suggested that we use specific words like "first" (while moving his left hand in a downward motion) and "then" (while moving his right hand in a downward motion) so he would learn that what he wanted was coming but that first we had to do something else. So, it might go like this, "First (moving left hand down) we will put your shoes on. Then (moving right hand down) we will go outside."
It didn't take him long to figure out how this worked so he would use this to tell me what he wanted, "First we go to the pool. Then we go to McDonald's." Umm, no, you have me confused with your father. So he'd try another tactic. "First we put shoes on. Then we go to the pool." Ummm, no, still wrong. I'm not taking you to the pool today.
Cue temper tantrum.
But we're learning. Mr. Victor has some major sensory needs going on. Head banging and biting are obviously sensory releases for him but inappropriate releases so we need to find other ways for him to use his body and his upper body muscles in particular. He does enjoy the pool so we try to get to the YMCA a few times a week. Wearing a swim vest he has figured out how to float and "swim" and would probably spend all day there if we let him. He also now has a sensory area in part of the basement with his own ball pit, slide going into the ball pit, Hippie-beads in the doorway (he calls it his shower), a light switch he can reach and turn on-and-off to his heart's content (until a sighted person yells for light), a cocoon swing, a tunnel, and a rope ladder. Oh, and a padded floor to keep us all from having heart attacks at the sight of him taking risks with his gross motor skills.
So, Mr. Victor, keep on being you. You have been victorious and you will continue to be victorious. Thank you for teaching so much about faith and trust and loving through the hard.
Yes, without Johnny Cash. I suppose the guy's okay but listening to him all day long can be a bit too much. I blame The Good Doctor for introducing the Little Man with Black Hair to the Man in Black. Now we have to listen to him constantly, identifying when he is singing with a guitar and when he is not. When we hear drums and when we do not. And if it's a song Mr. Victor does not recognize, then I have to answer the question a hundred times or more, "Is this Johnny Cash?" Yes, Victor, don't you recognize his voice? "Is that his voice?" Yes, Victor, that is his voice. It is Johnny Cash. And Heaven forbid that youtube switch us to June Carter Cash!
Don't get me wrong. We love Victor. I love Victor. But life with Victor is unlike life with any of the other children in this house. And yes, I do know that each child is unique. But for the most part, things have been pretty cookie-cutter. And this one is just more unique than the rest.
The other children learned pretty quickly that temper tantrums would get them nowhere. And banging their own head or biting their own arm during a tantrum would hurt so they would do it once and never again. Not this child. He seems to need the release of these self-injurious behaviors. I am open to suggestions but I can tell you that ignoring, reverse psychology, offering a pillow, creating a safe and cushioned area, picking him up, snuggling him, etc. do not work. Well, the last two keep him from hurting himself but then he kicks me so not necessarily the best alternative. Unless we're in public because most other people prefer to see a child hurting his mother than hurting himself. The reaction is far better if I'm being kicked or have a bloody lip than if he is banging his own head. Go figure.
I have potty trained 6 other children at age 2 and have been successful in the process (yay, me!). Yes, 6 of 6 are completely trained. Surprised? 1 came to me trained. Child #8, however, is now on Week 39 (give or take a few weeks and breaks for my sanity) with only an average of 60% success on a daily basis. I have promised my mother, mother-in-law, and the nursery workers plenty of rewards for sending him home trained but obviously no one is taking me seriously. And so I clean the pee off the floor. Again. Happily, of course. No, not happily, but joyfully. Because we do love our Mr. Victor.
We love his smile.
And his sense of humor.
His snuggling and his hugs and kisses.
And most of all, I think I love his conversations.
He used to always tell us he had a question but would usually follow-up with a statement. So Eden told him that he should tell us he had a statement instead. So now he tells us he has a statement. Usually it's something un-profound like, I am going in the den. Great, Buddy, and have fun. But now he seems to know the difference so I'll get a conversation something like this:
Victor: Mommy, I have a question to make.
Okay, what is your question?
Victor: No, I have a statement and a question.
Okay, what is your statement?
Victor: I am going outside.
I don't think so; it's freezing outside. What is your question?
Victor: Are we going to a store?
No. Again, it's freezing outside and besides, your mother is an introvert and prefers to stay home. Is that okay?
Victor: Yes.
Whew!
He also uses this tactic to make requests.
Victor: Mommy, I have a statement.
Okay, what is it?
Victor: I am having chocolate.
No, I don't think so but good try and thank you for being polite.
And sometimes he uses our methods against us in conversation. A few months back, he was having trouble with transitions (trouble is not quite the right word here, think: all out knock-down, drag out, self-injurious bang-fest). One of his therapists suggested that we use specific words like "first" (while moving his left hand in a downward motion) and "then" (while moving his right hand in a downward motion) so he would learn that what he wanted was coming but that first we had to do something else. So, it might go like this, "First (moving left hand down) we will put your shoes on. Then (moving right hand down) we will go outside."
It didn't take him long to figure out how this worked so he would use this to tell me what he wanted, "First we go to the pool. Then we go to McDonald's." Umm, no, you have me confused with your father. So he'd try another tactic. "First we put shoes on. Then we go to the pool." Ummm, no, still wrong. I'm not taking you to the pool today.
Cue temper tantrum.
But we're learning. Mr. Victor has some major sensory needs going on. Head banging and biting are obviously sensory releases for him but inappropriate releases so we need to find other ways for him to use his body and his upper body muscles in particular. He does enjoy the pool so we try to get to the YMCA a few times a week. Wearing a swim vest he has figured out how to float and "swim" and would probably spend all day there if we let him. He also now has a sensory area in part of the basement with his own ball pit, slide going into the ball pit, Hippie-beads in the doorway (he calls it his shower), a light switch he can reach and turn on-and-off to his heart's content (until a sighted person yells for light), a cocoon swing, a tunnel, and a rope ladder. Oh, and a padded floor to keep us all from having heart attacks at the sight of him taking risks with his gross motor skills.
So, Mr. Victor, keep on being you. You have been victorious and you will continue to be victorious. Thank you for teaching so much about faith and trust and loving through the hard.
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