We took Darin in today to be evaluated for the autism therapy trial at BYU. He passed all the tests with flying colors. That meant he wasn't eligible for the therapy trial. I had a sinking feeling when the director told us that, but it was quickly followed by an offer to use Darin in their diagnosis class beginning in the Fall. Darin will be a guinea pig for graduate students who are being taught how to recognize various behaviors in developmentally delayed children. After the diagnosis class is over, they will continue to help Darin with what he needs. WE GOT DARIN INTO THE BYU SPEECH THERAPY CLINIC!!!
As for the tests he went through today, it was all about how Darin interacted with the graduate students. I've never been more happy to see my son fail. He was willing to play the games they wanted to play. He was pretending his dog was licking ice cream. He would drive his car around and stop when the light was red and go when the light was green. The best moment came when they pointed out one of the toys was holding a little cat. Darin pretended his dog toy was scared of the cat and ran away. Everyone was laughing about that, and of course, in true Darin fashion, the positive response meant he wanted to continually have his dog toy run away from the cat.
The transition of leaving all of the new-to-him toys was difficult, but he was distracted for awhile by being able to push the handicap button that automatically opened the door. He also almost pushed the fire alarm thinking it was the way to open the second door (luckily, the fire alarm wasn't a push button system, so it would have taken him quite a bit of effort and a lot of distraction of all of the adults to allow him to trigger the fire alarm).
So, I've never been more thrilled that my son failed. He'll be starting a long term therapy process at BYU in the Fall - and he'll be able to help all of those lovely new graduate students learn how absolutely adorable he can be when he's in a good mood.
Friday, February 18, 2011
Thursday, February 17, 2011
Mental Switch
Have you ever felt like you would really like to have a switch in your brain to turn certain automatic responses or feelings off?
I wish I could turn off the paranoia of being watched or judged. I try to tell myself that I don't care what people think. I try to tell myself people aren't thinking what I believe they are thinking. When I'm somewhere with Darin and he has a meltdown, I wish I could turn off the part of me that is worried about what people are thinking. When I see Darin's fingernails are getting long and jagged and dirty, I wish I could turn off the part of my brain that worries about what his teachers must think of his mother. If I could turn off that part of my brain, I might have been able to delay the struggle of last night. I wouldn't have had my son in a vice grip to clip his fingernails. I might have waited for a time when he would be willing to have it done.
If I had mental switches, I could turn off the part of my brain that was frustrated by Darin's behavior. I could have turned off the part of my brain that cared what Darin's fingernails looked like. I could have turned off the pain from the cramping in my hand from attempting to hold Darin's hand still so I wouldn't clip something I shouldn't.
If I had mental switches, I could turn off the part of my brain that wonders what it is like to have a child who understands the needs for basic grooming like haircuts and fingernail trimmings. A child who understands that sometimes it isn't fun to get clean, but it has to happen. A child who won't scream and struggle while his mom attempts to perform these basic grooming needs.
I wish I could turn off the paranoia of being watched or judged. I try to tell myself that I don't care what people think. I try to tell myself people aren't thinking what I believe they are thinking. When I'm somewhere with Darin and he has a meltdown, I wish I could turn off the part of me that is worried about what people are thinking. When I see Darin's fingernails are getting long and jagged and dirty, I wish I could turn off the part of my brain that worries about what his teachers must think of his mother. If I could turn off that part of my brain, I might have been able to delay the struggle of last night. I wouldn't have had my son in a vice grip to clip his fingernails. I might have waited for a time when he would be willing to have it done.
If I had mental switches, I could turn off the part of my brain that was frustrated by Darin's behavior. I could have turned off the part of my brain that cared what Darin's fingernails looked like. I could have turned off the pain from the cramping in my hand from attempting to hold Darin's hand still so I wouldn't clip something I shouldn't.
If I had mental switches, I could turn off the part of my brain that wonders what it is like to have a child who understands the needs for basic grooming like haircuts and fingernail trimmings. A child who understands that sometimes it isn't fun to get clean, but it has to happen. A child who won't scream and struggle while his mom attempts to perform these basic grooming needs.
Monday, February 14, 2011
Glimmers of Happiness
OK. Raising Darin isn't all doom and gloom. There are glimmers of happiness. Like this weekend when I was having "mean Mommy" moments. I had just enough of double-don't-do-that duty and I just walked into the kitchen and had a good cry. Not only did Lizzy not do her normal reaction of wailing her own set of tears at being told not to do something, she came over and put a comforting hand on my knee. And then one of the blessings in my life, my little son Darin, came over and asked me, "What's the matter?" For him to recognize my pain was a glimmer of happiness.
And today I received another glimmer of happiness. The BYU Speech Therapy Clinic called today about possibly putting Darin in a trial therapy program. They are looking for high-functioning autism children for a 10-week study. He would go twice a week for 50 minutes - and it would be for free. The Director of the Clinic is running the trial and she is the one that called me about it.
They are getting ready for my little boy. They asked if there was anything he particularly likes and if there was anything that gets him upset they could avoid. He loves golf. He'll hit a whiffle ball around the house with a plastic bat just to play golf. He loves to play golf on the Wii. He loves Batman. He has a Batman shirt my mom gave him for Christmas that he loves to wear. He plays Batman Lego on the Nintendo DS. He loves getting dressed up as Batman (and occasionally as Superman). He only really gets upset when we need him to transition. He is a pretty easy-going kid. He loves Batman and golf. That's what I told them. I told them what makes my little boy happy - and having this opportunity for my little boy made me happy.
Now, if you'll excuse me, I have to surf the net a little more. I'm making plans for how I'm going to make my kids' birthdays special. I know it is still a few months away, but I'm a planner. And my kids are going to get special birthdays. Batman and golf for one, pink and princesses for the other.
And today I received another glimmer of happiness. The BYU Speech Therapy Clinic called today about possibly putting Darin in a trial therapy program. They are looking for high-functioning autism children for a 10-week study. He would go twice a week for 50 minutes - and it would be for free. The Director of the Clinic is running the trial and she is the one that called me about it.
They are getting ready for my little boy. They asked if there was anything he particularly likes and if there was anything that gets him upset they could avoid. He loves golf. He'll hit a whiffle ball around the house with a plastic bat just to play golf. He loves to play golf on the Wii. He loves Batman. He has a Batman shirt my mom gave him for Christmas that he loves to wear. He plays Batman Lego on the Nintendo DS. He loves getting dressed up as Batman (and occasionally as Superman). He only really gets upset when we need him to transition. He is a pretty easy-going kid. He loves Batman and golf. That's what I told them. I told them what makes my little boy happy - and having this opportunity for my little boy made me happy.
Now, if you'll excuse me, I have to surf the net a little more. I'm making plans for how I'm going to make my kids' birthdays special. I know it is still a few months away, but I'm a planner. And my kids are going to get special birthdays. Batman and golf for one, pink and princesses for the other.
My Life as a Broken Record
I look at families with multiple children and I'm a bit jealous. I'm not jealous because of the number of children they have. I'm perfectly content with the two I have and the one I hope to be worthy to raise in the next life. I'm jealous because their younger kids can learn from the older kids. They talk and walk and do so many things sooner than their first child did because they emulate their older siblings.
The problem is that younger siblings DO emulate their older siblings. Lizzy emulates Darin and since Darin doesn't have the same skill sets as other 4-year-olds, it isn't very helpful. And the joy doesn't stop there. Darin loves to emulate Lizzy. And to the two of them, it is all a fun game. And Mommy has her part to play. When Lizzy climbs on the back of the couch, Mommy tells her to not climb on the back of the couch. Those are the magic words. Those are the words that cue Darin that he needs to climb on the back of the couch and have his turn. The game isn't complete if Mommy doesn't also have to tell Darin to get off the back of the couch. And it is funny to them. It is frustrating to Mommy, so very frustrating.
I sometimes wonder what it would be like if my younger child were the autistic one and the older child had developed in the "normal" way. Would my life be a little bit easier? Would the younger child who had the tendancy to mimic behavior because they don't understand how they are "supposed" to behave be better behaved because of the example of a "normal" older sibling? Would it have worked? Would my life be easier now? Because this broken record wants MP3 file - plays smoothly and doesn't get scratched. This broken record is tired of having to repeat herself and watching her two children repeat each other.
The problem is that younger siblings DO emulate their older siblings. Lizzy emulates Darin and since Darin doesn't have the same skill sets as other 4-year-olds, it isn't very helpful. And the joy doesn't stop there. Darin loves to emulate Lizzy. And to the two of them, it is all a fun game. And Mommy has her part to play. When Lizzy climbs on the back of the couch, Mommy tells her to not climb on the back of the couch. Those are the magic words. Those are the words that cue Darin that he needs to climb on the back of the couch and have his turn. The game isn't complete if Mommy doesn't also have to tell Darin to get off the back of the couch. And it is funny to them. It is frustrating to Mommy, so very frustrating.
I sometimes wonder what it would be like if my younger child were the autistic one and the older child had developed in the "normal" way. Would my life be a little bit easier? Would the younger child who had the tendancy to mimic behavior because they don't understand how they are "supposed" to behave be better behaved because of the example of a "normal" older sibling? Would it have worked? Would my life be easier now? Because this broken record wants MP3 file - plays smoothly and doesn't get scratched. This broken record is tired of having to repeat herself and watching her two children repeat each other.
Wednesday, February 9, 2011
An Intricate Dance
Raising a child with autism is like trying to learn an intricate dance being choreographed by an extremely talented choreographer. You are always trying your best to learn the steps, and just when you think you are getting the hang of it, the choreographer makes a few tweaks to the routine. You have to pick up on the slight differences, the steps that have been removed, the steps that have been added. Unfortunately, the choreographer expects you to know these changes instinctively. And just like any great artist, they get frustrated by the delay in the process when you need time to learn.
An example of one of Darin's intricate dances is bedtime. He picks out his pajamas, but I have to make sure I call them "sleepings" because that's what he calls them. He gets his wipes and his clean pull-ups (no potty training yet, but that's for a different posting). He gets his laundry basket. He makes sure all of these things are on the bed before he gets undressed. He takes his shoes off, puts them together, and put them back in the closet. Once he is undressed, that's when it becomes a dance for me. Sometimes he let's me get him clean before his new underwear. Sometimes he needs to do it all by himself. Sometimes he'll let me help. Once he's all dressed, he gets into bed, I have to ask him what color his glowstick is and we tuck it behind his shoulder. We count his blankets as we put them on. We take inventory of all the things he "needs" to go to bed. I have to say the same words, give him a kiss, blow him a kiss, and say goodbye. If I miss any of this routine, it's like something snaps. He doesn't have a meltdown, but he gets upset. If I can figure out what is off for him and fix it, he snaps right back into the adorable little boy I know. If I don't figure out what is wrong, that's when the meltdown happens. That's when he loses the ability to really tell me what's wrong. That's when we have to resort to showing. He isn't calm enough to use his words, so we have to show.
That's when it gets hard for me. When my son is so frustrated that he loses grasp on his only basic communication skills, that's when it really hits me that I can't really talk to my four-year-old son. The extent of my conversations with my son are yes/no questions and giving him choices where he'll repeat his choice back to me. He doesn't spontaneously say I love you. He only says I love you after I've said it. And considering he repeats a lot of what he hears right after he hears it, it is difficult to believe that he understands what he is saying to me.
Luckily for me, I know he loves me. The way I know this is because of the 30 seconds I get with him when I come home from work. When I walk in the door, I hear, "MOMMY!" and he comes running to give me a hug. That's when I know he loves me. That's the 30 seconds I look forward to every day. Sometimes, it is the best 30 seconds of my day.
An example of one of Darin's intricate dances is bedtime. He picks out his pajamas, but I have to make sure I call them "sleepings" because that's what he calls them. He gets his wipes and his clean pull-ups (no potty training yet, but that's for a different posting). He gets his laundry basket. He makes sure all of these things are on the bed before he gets undressed. He takes his shoes off, puts them together, and put them back in the closet. Once he is undressed, that's when it becomes a dance for me. Sometimes he let's me get him clean before his new underwear. Sometimes he needs to do it all by himself. Sometimes he'll let me help. Once he's all dressed, he gets into bed, I have to ask him what color his glowstick is and we tuck it behind his shoulder. We count his blankets as we put them on. We take inventory of all the things he "needs" to go to bed. I have to say the same words, give him a kiss, blow him a kiss, and say goodbye. If I miss any of this routine, it's like something snaps. He doesn't have a meltdown, but he gets upset. If I can figure out what is off for him and fix it, he snaps right back into the adorable little boy I know. If I don't figure out what is wrong, that's when the meltdown happens. That's when he loses the ability to really tell me what's wrong. That's when we have to resort to showing. He isn't calm enough to use his words, so we have to show.
That's when it gets hard for me. When my son is so frustrated that he loses grasp on his only basic communication skills, that's when it really hits me that I can't really talk to my four-year-old son. The extent of my conversations with my son are yes/no questions and giving him choices where he'll repeat his choice back to me. He doesn't spontaneously say I love you. He only says I love you after I've said it. And considering he repeats a lot of what he hears right after he hears it, it is difficult to believe that he understands what he is saying to me.
Luckily for me, I know he loves me. The way I know this is because of the 30 seconds I get with him when I come home from work. When I walk in the door, I hear, "MOMMY!" and he comes running to give me a hug. That's when I know he loves me. That's the 30 seconds I look forward to every day. Sometimes, it is the best 30 seconds of my day.
Tuesday, February 8, 2011
Why
There are so many times that I have wanted to write about our successes and set-backs in raising a child with autism, but I didn't want our family blog to seem to be all about Darin. I didn't want stories of our struggles surrounded by stories of our kids playing minature golf and helping bake cookies. I've wanted a place to write about Darin and now with a little encouragement, I've started one.
I wanted just the right title. I tried to make it cute with alliteration, but I didn't want to make light of the situation. I also didn't want it to be too serious or clinical. This blog isn't about talking about the broad strokes of autism or the politics or medicine of autism. This blog is about my son.
You can read all of the books and studies about autism. Sometimes they just don't help. My child is unique, just like every child is unique. Maybe something I write here will help someone I know understand how I raise my child. Maybe something I write here will give someone else an idea of how to help their child, autistic or not. Maybe something I write here will touch someone who needs it.
About a year ago, I had a personal revelation regarding being a parent to an autistic child and about being a parent in general. I wrote about it in my blog and soon thereafter, I had people calling me or writing to me about how they hoped they had never treated me in such a fashion. I don't write in my blog to call people to repentance. I write in my blog for a personal release of emotion. I'm not here to lecture. I'm not a perfect person and I never will be, so I'll never writing to lecture.
So, unlike things named "Sewing Made Simple" or "Cooking Made Easy", this is Autism Made Real. A blog about a real little boy and the lessons learned by this imperfect mother as she tries to be the person he needs.
I wanted just the right title. I tried to make it cute with alliteration, but I didn't want to make light of the situation. I also didn't want it to be too serious or clinical. This blog isn't about talking about the broad strokes of autism or the politics or medicine of autism. This blog is about my son.
You can read all of the books and studies about autism. Sometimes they just don't help. My child is unique, just like every child is unique. Maybe something I write here will help someone I know understand how I raise my child. Maybe something I write here will give someone else an idea of how to help their child, autistic or not. Maybe something I write here will touch someone who needs it.
About a year ago, I had a personal revelation regarding being a parent to an autistic child and about being a parent in general. I wrote about it in my blog and soon thereafter, I had people calling me or writing to me about how they hoped they had never treated me in such a fashion. I don't write in my blog to call people to repentance. I write in my blog for a personal release of emotion. I'm not here to lecture. I'm not a perfect person and I never will be, so I'll never writing to lecture.
So, unlike things named "Sewing Made Simple" or "Cooking Made Easy", this is Autism Made Real. A blog about a real little boy and the lessons learned by this imperfect mother as she tries to be the person he needs.
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