Okay, this is going to be the last time I apologize at the beginning of a blog entry for not writing more often. By now you people know that life with an autistic preschooler and an infant is crazy or you haven't been paying attention. Also in my "spare" (ha!) time, I've been trying to do some actual, like, literary writing, hence the neglected blog. I know, snooty snooty. Anyway...so...to what I came over here to write about today:
We got a notice in Boog's backpack last Thursday that his school was putting on a performance today called "Let it Snow, Let it Snow, Let it Snow". There weren't any other details on the flier except the time and since the Boog can't tell us what he's working on at school, we had no idea what to expect. I figured it would just be kind of an impromptu casual gather-the-special-ed-kids and give them jingle bells and play some Christmas music kind of thing, but Dylan and I thought it was important to go anyway.
So this morning, we went and took PJ and much to our surprise, as we entered the school, an adorable, very excited little boy practically jumped out of his chair to hand us a program on which were listed several musical numbers and credits for choreography and the like. Then, we entered the gym which has a stage on one end. It was all tinsel and lights and Christmas cheer, and there were several parents and other proud family members assembled with cameras. I did not bring my camera. I will regret this for the rest of my life.
Then, the show started. It was adorable. The first number was put on by the wheelchair class and their aides. There was choreography, there was glittery-snow throwing, there were jingly bells everywhere. The kids looked so proud of themselves.
The second number was put on by a few classes of little ones. The Boog was in this number. It was called "Five Little Snowmen" and they all had white shirts with snowmen buttons on them. He was the last one to come in the gym, holding the hand of his aide, and as he walked in all smiley and excited, I just started to cry. Throughout his song he stood up there with his class without protesting or trying to run away and mostly just stimmed with his hands, but he also smiled and every time the teachers and aides (most of the kids weren't singing) sang the line where they say "bye bye" to the snowmen as they melt, he would wave a very exaggerated "bye bye" along with the other kids. That made me cry even harder. Mimicry has been such a hard-won skill for him and it is amazing that he was able to do it consistently under these circumstances in front of all these people!
After he walked back down the ramp and out to the waiting area, smiling and laughing and clearly proud of himself, I got a hold of myself and enjoyed the next few numbers which were just as adorable and well-planned, until he came back out for the finale. All the kids lined up and sang, or at least shook jingle bells to "Jingle Bells" and "We Wish you a Merry Christmas". Boog, being one of the littlest littles, was in the front row. He loved his jingle bell. He loved it so much in fact that he stole his little buddy Elijah's jingle bell so he could match jingle bell to jingle bell and shake them both. I laughed. Poor Elijah cried. On and off through the number, I kept tearing up and then getting my composure back until the end. The kids finished and the audience started clapping. Boog, who was stimming with his hands at this point, looked up, smiled really big and started this big, exaggerated clapping. All around us, I heard "Awwwwww", and I lost it again.
I'm normally not much of a crier. I suppose I could blame it on the extreme sleep deprivation I've been suffering under the regime of They-Who-Shall-Not-Sleep. I could also blame it on postpartum breastfeeding hormones. Neither of those explanations is the real one, though. The fact of the matter is that, as a parent of a non-verbal autistic kid, I have accepted that there are some "normal" childhood milestones we may just never see. I've worked through this fact, emotionally speaking, and I'm fairly comfortable with it and content to celebrate the Boog for who he is. Sometimes, I get surprised, though.
I never even considered the possibility of the Boog participating in a Christmas pageant, much less being excited to do so and as engaged as he was in the process. It was just...the best Christmas gift I think I've ever received. I don't know if all the teachers and aides who worked so hard on the program know how much it means to those of us with kids on a different path to see them doing something so quintessential to the "normal" childhood experience, but I could never thank them enough. He may not have sung or danced, but he stood and he smiled and he waved and shook his jingle bells and he clapped for himself at the end and it was simply one of my top ten favorite moments as a parent so far. I am so so proud of my boy!
Tuesday, December 6, 2011
Thursday, October 27, 2011
The Boog's Master Plan to Get Everything He Ever Wanted
Wow, it's been longer than I'd planned between blog entries. We've been a busy family. The Boog, in particular, has made some major changes. He turned 3 and had to say goodbye to all his EI therapists, which was sad, but now he's going to special ed preschool two days a week and going to see a rockin' BCBA, Mrs. Sara, three days a week. The Boog's daddy has been busy getting a monstrous infection and a surgery to remove said infection (poor Boogdaddy). The Boog's mommy has been busy taking care of everybody and doing some actual non-Internet writing (and losing 45 lbs. thankyouverymuch). The Boog's sister has been busy mostly eating things: milk, sweet potatoes, her toes, etc.
Anyway, so the Boog has made a lot of progress these past two months, but most notably, his non-verbal communication has improved to an amazing extent. Every day he now uses pointing, head-shaking and about 3-4 signs to tell us what he wants and doesn't want. It's pretty rudimentary, but goshdarnit if it isn't effective. Sometimes I wonder why I don't just shut up and use a small library of gestures to communicate my needs (mostly because I'm a big blabbermouth who loves her OED way too much to give up words). It was only today, though, that I began to realize that the Boog's sloooooooow entrance into communication has actually worked in his favor in some ways...and perhaps is all part of his Boogly little master plan...conspiracy theory? Perhaps. You decide.
Today when the Boog got off the bus from school (he takes the bus now!!! BIG BOY!), he came right into the house and immediately began banging on the dishwasher and pointing at the microwave. I was juggling about 57,000 (okay more like 3) things at the moment - phone, baby, dog, but I dropped everything (lest my dear readers worry, I did not literally drop the baby) to get the Boog a sippy of milk, because when he bangs on the dishwasher and points at the microwave, that means, "Hey, woman, get a cup out of the dishwasher (yeah...I sometimes don't unload my dishwasher until the clean dishes are all used up out of it...and by sometimes I mean often), put some milk in it and put it in the microwave. Now."
About an hour later, he went into the kitchen and began banging on the dishwasher and pointing at it and whining. I immediately dropped the poems I was editing and ran into the kitchen and got him a sippy of juice/water, because when he bangs on the dishwasher and does not point at the microwave, it means, "Hey, woman, get a cup out of the dishwasher and put some juice and water in it. Now."
A little after that, I turned on the TV and was watching a god-awful daytime show I am embarrassed to name. You can guess if you like, but I probably won't confirm if you get the right answer. Anyway, when the Boog saw me turn on the TV, he got very excited. However, when he saw what was on the TV, he made what we call his "stinky face" and walked away. A few minutes later, he brought me the disc of his favorite movie, Ponyo, which was on the table out of its case due to extreme frequency of use (often in the middle of the night, ugh...big boy bed training has had a somewhat uneven success record so far). He pointed at it, and then walked over to the TV and pointed at the TV. I immediately hopped up and sacrificed my guilty daytime pleasure for a children's movie I've seen 3000 times, because, well, that one's pretty obvious, right? "Hey, woman, turn this crap off and put MY movie on. Now."
The Boog's new forms of communication do not end with gestures. He also has taken to giving his little sister great BIG Boog hugs whenever she's sitting on the floor...and then stealing whatever toy she was playing with as he walks away.
Until today, I was seeing all of this through rose-colored special needs parent glasses. "Oh," I thought, "He's begun to communicate with us! How lovely! Sunshine and puppies and rainbows, etc., etc."
Today, though, I realized that my sweet Boog has become a master manipulator. He has learned how to turn me into his personal Cinderella by giving me just enough encouragement about his development to keep me hopping to it, but not so much that I can explain to him, "Son, we can't always have what we want" without being crippled by that awful ASD parent fear of REGRESSION. He has also learned how to use gestures of love (AKA hugs for sister) to get what he really wants (AKA sister's every possession).
Hmmm...
Is it a master plan or just plain ol' preschooler behavior with a dose of non-verbal autistic thrown in to muddy the waters? I don't know, but I do know he's getting everything he wants and I'm busier than ever and the Peej is getting bubkis...hmmm...
Anyway, so the Boog has made a lot of progress these past two months, but most notably, his non-verbal communication has improved to an amazing extent. Every day he now uses pointing, head-shaking and about 3-4 signs to tell us what he wants and doesn't want. It's pretty rudimentary, but goshdarnit if it isn't effective. Sometimes I wonder why I don't just shut up and use a small library of gestures to communicate my needs (mostly because I'm a big blabbermouth who loves her OED way too much to give up words). It was only today, though, that I began to realize that the Boog's sloooooooow entrance into communication has actually worked in his favor in some ways...and perhaps is all part of his Boogly little master plan...conspiracy theory? Perhaps. You decide.
Today when the Boog got off the bus from school (he takes the bus now!!! BIG BOY!), he came right into the house and immediately began banging on the dishwasher and pointing at the microwave. I was juggling about 57,000 (okay more like 3) things at the moment - phone, baby, dog, but I dropped everything (lest my dear readers worry, I did not literally drop the baby) to get the Boog a sippy of milk, because when he bangs on the dishwasher and points at the microwave, that means, "Hey, woman, get a cup out of the dishwasher (yeah...I sometimes don't unload my dishwasher until the clean dishes are all used up out of it...and by sometimes I mean often), put some milk in it and put it in the microwave. Now."
About an hour later, he went into the kitchen and began banging on the dishwasher and pointing at it and whining. I immediately dropped the poems I was editing and ran into the kitchen and got him a sippy of juice/water, because when he bangs on the dishwasher and does not point at the microwave, it means, "Hey, woman, get a cup out of the dishwasher and put some juice and water in it. Now."
A little after that, I turned on the TV and was watching a god-awful daytime show I am embarrassed to name. You can guess if you like, but I probably won't confirm if you get the right answer. Anyway, when the Boog saw me turn on the TV, he got very excited. However, when he saw what was on the TV, he made what we call his "stinky face" and walked away. A few minutes later, he brought me the disc of his favorite movie, Ponyo, which was on the table out of its case due to extreme frequency of use (often in the middle of the night, ugh...big boy bed training has had a somewhat uneven success record so far). He pointed at it, and then walked over to the TV and pointed at the TV. I immediately hopped up and sacrificed my guilty daytime pleasure for a children's movie I've seen 3000 times, because, well, that one's pretty obvious, right? "Hey, woman, turn this crap off and put MY movie on. Now."
The Boog's new forms of communication do not end with gestures. He also has taken to giving his little sister great BIG Boog hugs whenever she's sitting on the floor...and then stealing whatever toy she was playing with as he walks away.
Until today, I was seeing all of this through rose-colored special needs parent glasses. "Oh," I thought, "He's begun to communicate with us! How lovely! Sunshine and puppies and rainbows, etc., etc."
Today, though, I realized that my sweet Boog has become a master manipulator. He has learned how to turn me into his personal Cinderella by giving me just enough encouragement about his development to keep me hopping to it, but not so much that I can explain to him, "Son, we can't always have what we want" without being crippled by that awful ASD parent fear of REGRESSION. He has also learned how to use gestures of love (AKA hugs for sister) to get what he really wants (AKA sister's every possession).
Hmmm...
Is it a master plan or just plain ol' preschooler behavior with a dose of non-verbal autistic thrown in to muddy the waters? I don't know, but I do know he's getting everything he wants and I'm busier than ever and the Peej is getting bubkis...hmmm...
Tuesday, August 30, 2011
Boog vs. Monkeys
Okay, so, young children tend to have favorite objects or themes, yes? Some kids like dinosaurs, some kids like princesses, etc., etc. Well, autistic children have these nifty things called "fixations", which means basically, you take that normal amount of toddler obsession for a certain object or theme and you crank it to 11. Or 12, possibly.
The Boog's current fixation is monkeys. He goes apeshit for anything with monkeys on it (sorry, I couldn't resist). On a side note, not really a Curious George fan, because, as my biologist husband shouts in exasperation at the television every morning, Curious George IS NOT A MONKEY! HE'S AN APE! BLEEAARRGGHH! Apparently the Boog appreciates and respects this difference. He is his father's son. Anyway...
The problem with fixations is that they are obsessions so strong that they tend to cause problems. I am firmly convinced that his love of monkeys will be my son's downfall. You know what they say: the love of monkey is the root of all evil. Sheesh, I'm on a roll today...
Thus far monkeys have caused the following distracting, painful, or embarrassing snafus:
1. At the Boog's speech therapy group, they sing that Monkey Alligator song. You know, the one where the alligator eats the monkeys one by one because children delight in murder and mayhem? So, all the kids get a little stuffed monkey to hold and the alligator comes by and eats them one by one. The children love it. They shriek with delight...except for the Boog. The Boog will not give up his monkey. He. Will. NOT. Now, this is a child with fine motor delays who can barely hold on to a toothbrush, but he grips that thing like his life depends on keeping that monkey. When the therapist finally pries it from his tiny fingers, he howls in great despair and is generally cranky and uncooperative for the rest of the session. Oops. Monkeys - 1, Boog - 0.
2. The Boog now carries this fabric block with a picture of a monkey on it everywhere with him. It's kind of dirty and gross, because he likes to rub it on the floor and then give it kisses. Ew. Anyway...the other day, we were walking in the parking lot at the grocery store. Dylan and I stopped so he could hand me the Peej, and the Boog, entranced by the sight of the monkey block he was holding out in front of himself, kept walking and went straight over one of those cement block thingys that stops one's car from running over the sidewalk and into the front of the store, because apparently people don't know how to park. Conk. Ouchmyface. Luckily he didn't lose any teeth or break anything, but he got a bloody nose and has some wicked bruising from his chin to his forehead. Monkeys - 2, Boog - 0.
3. Now for the awkward...The Peej has these pants with a smiling monkey face on the butt. I don't know why clothing companies feel it necessary to put things on the butt of babies' pants, but it's a big thing right now. So, Pippa was wearing these the other day and laying on her tummy, monkey-side up. The Boog, walking by, monkey block in hand, spotted the monkey on PJ's butt and immediately dropped the block, smiled a big smile, leaned down and began to rub his face all over the monkey...on his sister's butt...yikes...Monkeys - 3, Boog - 0.
You see why I'm concerned. Monkeys have thus far caused the Boog to misbehave at school, injure himself, and unwittingly commit mild incest. Bad monkeys. Bad bad monkeys.
The Boog's current fixation is monkeys. He goes apeshit for anything with monkeys on it (sorry, I couldn't resist). On a side note, not really a Curious George fan, because, as my biologist husband shouts in exasperation at the television every morning, Curious George IS NOT A MONKEY! HE'S AN APE! BLEEAARRGGHH! Apparently the Boog appreciates and respects this difference. He is his father's son. Anyway...
The problem with fixations is that they are obsessions so strong that they tend to cause problems. I am firmly convinced that his love of monkeys will be my son's downfall. You know what they say: the love of monkey is the root of all evil. Sheesh, I'm on a roll today...
Thus far monkeys have caused the following distracting, painful, or embarrassing snafus:
1. At the Boog's speech therapy group, they sing that Monkey Alligator song. You know, the one where the alligator eats the monkeys one by one because children delight in murder and mayhem? So, all the kids get a little stuffed monkey to hold and the alligator comes by and eats them one by one. The children love it. They shriek with delight...except for the Boog. The Boog will not give up his monkey. He. Will. NOT. Now, this is a child with fine motor delays who can barely hold on to a toothbrush, but he grips that thing like his life depends on keeping that monkey. When the therapist finally pries it from his tiny fingers, he howls in great despair and is generally cranky and uncooperative for the rest of the session. Oops. Monkeys - 1, Boog - 0.
2. The Boog now carries this fabric block with a picture of a monkey on it everywhere with him. It's kind of dirty and gross, because he likes to rub it on the floor and then give it kisses. Ew. Anyway...the other day, we were walking in the parking lot at the grocery store. Dylan and I stopped so he could hand me the Peej, and the Boog, entranced by the sight of the monkey block he was holding out in front of himself, kept walking and went straight over one of those cement block thingys that stops one's car from running over the sidewalk and into the front of the store, because apparently people don't know how to park. Conk. Ouchmyface. Luckily he didn't lose any teeth or break anything, but he got a bloody nose and has some wicked bruising from his chin to his forehead. Monkeys - 2, Boog - 0.
3. Now for the awkward...The Peej has these pants with a smiling monkey face on the butt. I don't know why clothing companies feel it necessary to put things on the butt of babies' pants, but it's a big thing right now. So, Pippa was wearing these the other day and laying on her tummy, monkey-side up. The Boog, walking by, monkey block in hand, spotted the monkey on PJ's butt and immediately dropped the block, smiled a big smile, leaned down and began to rub his face all over the monkey...on his sister's butt...yikes...Monkeys - 3, Boog - 0.
You see why I'm concerned. Monkeys have thus far caused the Boog to misbehave at school, injure himself, and unwittingly commit mild incest. Bad monkeys. Bad bad monkeys.
Friday, August 26, 2011
Magical Boog and Me
It is an odd experience being the mother to a kid with special needs. You have the schedules and the therapies and the doctor appointments and the constant explaining, "This is Rylan, he probably won't say 'Hi' back to you, he's autistic", and the accepting and kindly brushing off of sympathies from people who just don't get how awesome it is to be the Boog's mother...
...and then you have these quiet moments at home when no one else is watching when you become aware that no matter how on top of things you are out in that world of doctors and therapists and other parents, you really have no clue at all what you're doing and no idea of how to properly manage this magical being you've been entrusted with.
I really do think of the Boog as a magical being. Some, perhaps lesser educated, people might think of a person with special needs as being less than a whole person, as if their emotions and thoughts were somehow smaller because of the labels we've put on them. I have no doubt at all that the Boog is a whole person, I just don't have access to most of him. It's like loving someone you only see in your dreams. Half the time I spend with him, it seems to me that he's some place else entirely.
I have, on occasion, described raising the Boog as raising a large, extremely advanced baby, mainly because he's non-verbal and I mostly have to guess at his needs and desires, but this is both a disservice to the incredibly bright and whole person he is and inaccurate. It's really more like raising a fairy or a merperson or something. I have said that it's like trying to communicate with someone who speaks a different language, but it goes deeper than that. We not only don't understand each other's languages, we don't understand the very methods we use to try to communicate with each other.
I also occasionally think, usually after a particularly grueling therapy session, well how dare we insist that he live in our world, speak our language, appreciate our things when he has his own very rich inner world that he lives in? The trouble is, though, that he has to live in our world. I can't live in his. He has to at least try to learn to talk, read, write, add and subtract, go to school, graduate, get a job, get married, etc., etc., etc., because there's nothing else to do.
So there are times when I sit and watch him quietly watching the gold-colored doorknob for half an hour and I have no idea at all what he's thinking and no connection is possible. Then, there are times like tonight when, after taking a header onto the concrete earlier because he was too mesmerized by his monkey block to watch his feet, he needs a little human contact. He was crying in his bed and I went to him and picked him up and put him on my lap and rocked with him and sang his lullaby. Instead of pushing me away with stiff arms, he laid his little head on my chest and wrapped his arms around me and when the song was over, he looked up in my face and whined and put his hand on my mouth to let me know he wanted me to sing it again, and I did - three more times.
Then I put him back to bed and I cried, because it is so hard and so wonderful to be his mother.
...and then you have these quiet moments at home when no one else is watching when you become aware that no matter how on top of things you are out in that world of doctors and therapists and other parents, you really have no clue at all what you're doing and no idea of how to properly manage this magical being you've been entrusted with.
I really do think of the Boog as a magical being. Some, perhaps lesser educated, people might think of a person with special needs as being less than a whole person, as if their emotions and thoughts were somehow smaller because of the labels we've put on them. I have no doubt at all that the Boog is a whole person, I just don't have access to most of him. It's like loving someone you only see in your dreams. Half the time I spend with him, it seems to me that he's some place else entirely.
I have, on occasion, described raising the Boog as raising a large, extremely advanced baby, mainly because he's non-verbal and I mostly have to guess at his needs and desires, but this is both a disservice to the incredibly bright and whole person he is and inaccurate. It's really more like raising a fairy or a merperson or something. I have said that it's like trying to communicate with someone who speaks a different language, but it goes deeper than that. We not only don't understand each other's languages, we don't understand the very methods we use to try to communicate with each other.
I also occasionally think, usually after a particularly grueling therapy session, well how dare we insist that he live in our world, speak our language, appreciate our things when he has his own very rich inner world that he lives in? The trouble is, though, that he has to live in our world. I can't live in his. He has to at least try to learn to talk, read, write, add and subtract, go to school, graduate, get a job, get married, etc., etc., etc., because there's nothing else to do.
So there are times when I sit and watch him quietly watching the gold-colored doorknob for half an hour and I have no idea at all what he's thinking and no connection is possible. Then, there are times like tonight when, after taking a header onto the concrete earlier because he was too mesmerized by his monkey block to watch his feet, he needs a little human contact. He was crying in his bed and I went to him and picked him up and put him on my lap and rocked with him and sang his lullaby. Instead of pushing me away with stiff arms, he laid his little head on my chest and wrapped his arms around me and when the song was over, he looked up in my face and whined and put his hand on my mouth to let me know he wanted me to sing it again, and I did - three more times.
Then I put him back to bed and I cried, because it is so hard and so wonderful to be his mother.
Friday, August 19, 2011
The Boog Speaks...Well Kind Of...
Obviously I haven't gotten the chance to do all those fancy things to the blog that I alluded to in the last post. What can I say? My children are anti-sleep. I promise it's coming...eventually...
Anyway, so I wanted to talk about a very exciting development: the Boog is starting to communicate. No, he's not talking or signing. He's handing us pictures.
Huh?
Okay, so there's this nifty thing called the picture exchange system. Non-verbal kids get a bunch of cards with pictures of objects and activities on them and they can hand them to a caregiver to request items, answer questions, etc. Cool, right?
As you can imagine, the Boog made this system infinitely more complicated than anyone could have foreseen. He wouldn't be the Boog if it was easy. He threw a wrench into the works by falling in love with the picture cards! He loves to hold small items and feel them all day long (his therapists call them fidgets), and the cards were apparently just the right size for fidgeting. Thus, all early interactions with the picture cards turned into,
"RyRy, give Mommy the card to get block."
Silence.
"RyRy, give Mommy the card."
So ignoring you, Mom.
"RyRy, look, block!"
Uh huh. Yeah.
"RyRy...don't you want the block?"
No, it seems vitally important to you, though, why don't you keep it?
"Okay fine, keep the darn card, I'll play with the block!"
Suits me!
All of this occurred while my son blissfully turned in circles, rotating the card and staring at it in glee while periodically pausing to give me a look like, "I ain't playin' your game, lady, look how friggin' awesome this card is!"
After much training at therapy, however, we're finally starting to be able to use the system a little bit. I can ask him certain questions and get answers and he occasionally brings me a card to ask for something. It is AMAZING what he knows and hasn't been able to express so far. He knows who Mommy and Daddy and sister and doggy and kitty are. He knows block, book, ball, blanket, TV, etc. Completely independent of the PECS stuff, he also has started responding appropriately to commands and requests like, "Come here", "Give to Mommy", "Show to Mommy", "No touch", "Where's your (insert object here)?", "Point to (a character or object in a book)".
It all seems to have come out of nowhere, but it seems obvious now that he's been in there all along and he's bright and funny and delighted to finally be able to communicate a little. He's still not talking, but it helps to know that he's listening and retaining information. Maybe he can eventually explain to us what the appeal of rotating a small card is...though he probably thinks that should be obvious. Silly parents.
Anyway, so I wanted to talk about a very exciting development: the Boog is starting to communicate. No, he's not talking or signing. He's handing us pictures.
Huh?
Okay, so there's this nifty thing called the picture exchange system. Non-verbal kids get a bunch of cards with pictures of objects and activities on them and they can hand them to a caregiver to request items, answer questions, etc. Cool, right?
As you can imagine, the Boog made this system infinitely more complicated than anyone could have foreseen. He wouldn't be the Boog if it was easy. He threw a wrench into the works by falling in love with the picture cards! He loves to hold small items and feel them all day long (his therapists call them fidgets), and the cards were apparently just the right size for fidgeting. Thus, all early interactions with the picture cards turned into,
"RyRy, give Mommy the card to get block."
Silence.
"RyRy, give Mommy the card."
So ignoring you, Mom.
"RyRy, look, block!"
Uh huh. Yeah.
"RyRy...don't you want the block?"
No, it seems vitally important to you, though, why don't you keep it?
"Okay fine, keep the darn card, I'll play with the block!"
Suits me!
All of this occurred while my son blissfully turned in circles, rotating the card and staring at it in glee while periodically pausing to give me a look like, "I ain't playin' your game, lady, look how friggin' awesome this card is!"
After much training at therapy, however, we're finally starting to be able to use the system a little bit. I can ask him certain questions and get answers and he occasionally brings me a card to ask for something. It is AMAZING what he knows and hasn't been able to express so far. He knows who Mommy and Daddy and sister and doggy and kitty are. He knows block, book, ball, blanket, TV, etc. Completely independent of the PECS stuff, he also has started responding appropriately to commands and requests like, "Come here", "Give to Mommy", "Show to Mommy", "No touch", "Where's your (insert object here)?", "Point to (a character or object in a book)".
It all seems to have come out of nowhere, but it seems obvious now that he's been in there all along and he's bright and funny and delighted to finally be able to communicate a little. He's still not talking, but it helps to know that he's listening and retaining information. Maybe he can eventually explain to us what the appeal of rotating a small card is...though he probably thinks that should be obvious. Silly parents.
Wednesday, August 10, 2011
The Blog Abides
Howdy folks! I know it's been awhile. As I observed before, time is scarce with two children, though the real problem, honestly, is that brainpower is scarce with two kids. I honestly have times when I'm talking to someone and I hear words coming out of my mouth that have nothing to do with what I wanted to discuss. "Honey, can you pick up the kids' meds after work?" can turn into, "Honey, black sandwiches and octopi live after work?" Seriously. The beginning and end of the sentence usually come out right, but the middle turns into a scary mess of gibberish which is also a window into the dark abyss of randomness that is my brain.
Um...see...this wasn't what I came here to write about...darn it black sandwiches and octopi again...
So, it's been pointed out to me by more than a few of you lovely people lately that I have a gift for writing. To those lovely delusional people, I would like to offer my collection of rejection letters up for review. The publishing world does not agree with you. Anyway, I've been toying with the idea of re-vamping the blog, getting an actual template, figuring out how to upload pictures, and basically turning it into a real grown-up blog. Maybe, and I hesitate to even type this because I'm pretty sure I can hear the sound of rejection letters being typed (Can they reject blogs? I'm fairly certain they can. In my head, those rejection letter folks are omnipotent and they also sit at desks 10 feet high with giant books and huge black feather quills with which to write those words of doom, "Thank you for your submission..."), I can find a nice little niche and make a few dollars.
To that end, there may be a few changes around here some time soon (soon being a relative term when you have two kids...). Please stick around, folks, I promise there will be tons more Boog anecdotes for you Boog fans, but perhaps I will pull my head out of the depths of the sea of picture exchange cards and dirty diapers that is my life as a mother, look around and write about what I see out there on the dry land of reality as well (how's that for an overwrought metaphor?).
So, thanks for reading, be patient with me, and when things are more together around here, I'll ask some of you lovely delusional people to tell your lovely delusional friends about me and my stream-of-consciousness babbling. You guys rock.
Um...see...this wasn't what I came here to write about...darn it black sandwiches and octopi again...
So, it's been pointed out to me by more than a few of you lovely people lately that I have a gift for writing. To those lovely delusional people, I would like to offer my collection of rejection letters up for review. The publishing world does not agree with you. Anyway, I've been toying with the idea of re-vamping the blog, getting an actual template, figuring out how to upload pictures, and basically turning it into a real grown-up blog. Maybe, and I hesitate to even type this because I'm pretty sure I can hear the sound of rejection letters being typed (Can they reject blogs? I'm fairly certain they can. In my head, those rejection letter folks are omnipotent and they also sit at desks 10 feet high with giant books and huge black feather quills with which to write those words of doom, "Thank you for your submission..."), I can find a nice little niche and make a few dollars.
To that end, there may be a few changes around here some time soon (soon being a relative term when you have two kids...). Please stick around, folks, I promise there will be tons more Boog anecdotes for you Boog fans, but perhaps I will pull my head out of the depths of the sea of picture exchange cards and dirty diapers that is my life as a mother, look around and write about what I see out there on the dry land of reality as well (how's that for an overwrought metaphor?).
So, thanks for reading, be patient with me, and when things are more together around here, I'll ask some of you lovely delusional people to tell your lovely delusional friends about me and my stream-of-consciousness babbling. You guys rock.
Thursday, July 14, 2011
The Boog Boogie
The Boog loves music. He's always loved music. The first time I felt him move, I was blasting Coheed and Cambria while driving home from culinary school (don't judge, they remind me of driving to campgrounds with my family while my dad blasted Rush...so judge my dad, haha). In the NICU, the only way the nurses could get him to stop screaming 24/7 was to play him this CD of cheesy instrumental versions of big band songs from one of the nurses' ballroom dancing class. During his early days the only way to keep him from beating me up while he was nursing was to sing to him. My favorite lullabies: Sweet Baby James by James Taylor and Rocky Raccoon by the Beatles, because who doesn't feel calmer when listening to a good tune about cowboys or barfights and drunken doctors, right?
I digress and the Peej is stirring...
Anyway, so Ry has always loved to listen to music, but recently he has started to dance when music is playing.
It is hilarious.
Not only is my son encumbered by white man's syndrome, he also has nystagmus which affects his balance and gross and fine motor delays, not to mention PDD/NOS which causes him to experience the world in a different way from most of humanity, so Lord knows what music sounds like to him or what he thinks he's actually doing when he's dancing...but his dance moves look something like this:
Twirl in circles. Stumble. Almost fall over. Recover and give a little hip shake to make the stumbling look intentional. Stomp foot three times. Emphatically. No seriously, guys, this is some no-nonsense foot stomping. Twirl in circles a few more times. Stumble again. Give up twirling and hold onto the TV stand for support. Shake hips several times. Stomp foot a few more times for good measure.
All of this is done with a very determined look on his face, because guys, come on, dancing is serious business, and God forbid we laugh at him at any point. I try not to laugh because I don't want to hurt his little feelings when he's trying SO hard...but seriously, who could help it?
I blame Ellen.
I digress and the Peej is stirring...
Anyway, so Ry has always loved to listen to music, but recently he has started to dance when music is playing.
It is hilarious.
Not only is my son encumbered by white man's syndrome, he also has nystagmus which affects his balance and gross and fine motor delays, not to mention PDD/NOS which causes him to experience the world in a different way from most of humanity, so Lord knows what music sounds like to him or what he thinks he's actually doing when he's dancing...but his dance moves look something like this:
Twirl in circles. Stumble. Almost fall over. Recover and give a little hip shake to make the stumbling look intentional. Stomp foot three times. Emphatically. No seriously, guys, this is some no-nonsense foot stomping. Twirl in circles a few more times. Stumble again. Give up twirling and hold onto the TV stand for support. Shake hips several times. Stomp foot a few more times for good measure.
All of this is done with a very determined look on his face, because guys, come on, dancing is serious business, and God forbid we laugh at him at any point. I try not to laugh because I don't want to hurt his little feelings when he's trying SO hard...but seriously, who could help it?
I blame Ellen.
Tuesday, July 5, 2011
Boog and Peej
Hello gentle readers! I apologize for the lengthy hiatus from blog writing, but I, well you know, had a baby and all, and in case you didn't know, let me tell you that caring for a newborn and toddler at the same time is a bit time-consuming (as in you need about 36 hours to get everything you need to get done in a 24 hour period) and mentally taxing (as in I actually forgot my own last name when I was signing a [very late] check to the power company a few weeks back...and yes it was printed on the top of the check...), so blogging was kind of on a back burner for awhile.
So, today I'd like to regale you with tales of the Boog and the Peej. Peej is my daughter (real name Pippa Jane, but she's rarely ever called that around here), 7 weeks old and HUGE! She is the sweetest, funniest, chubbiest little girl in the world. What's more, she sleeps! I mean, she SLEEPS! She started sleeping through the night last week. I woke up the first morning she did that, 8 hours after falling asleep, and went, "What the WHAT?!" Anyway...
Some of you may recall that I had a certain amount of trepidation at the thought of Boog becoming a big brother. He had been less than gentle with his baby dolls (as in, 'Hello, Miss Baby Doll, would you enjoy a flight across the room without an airplane?') and I feared that did not bode well for the Peej. Well, I have since learned, that, duh Mom, the Boog knows the difference between a baby-powder scented baby-shaped block of plastic and an actual baby, and my fears have been (mostly) put to rest.
Mostly Boog seems fascinated and confused by Baby Sister. He spends a lot of time standing in front of her staring at her. If I was Peej, this would probably freak me right out as it's some seriously horror-movie-kid creepy kind of stuff, but Peej seems unfazed. The whole staring thing was possibly to be expected, but what I did not expect was how tender and considerate he would be with her.
Autistic kids are not known for their empathy skills, but Boog has always transcended that stereotype by being remarkably aware of other people's emotions despite his lack of communication skills. I did not, however, expect him to be able to relate to a newborn who doesn't act like a reasonable adult. I should really stop expecting him to do or not do things...
He brings her things when she cries. Let me say that again. He BRINGS her things when she cries. He brings her his favorite books and holds them up for her to look at. He brings her his Tickle-me-Elmo and holds him to her face so he can "kiss" her like Boog likes to do to himself. Once, he even brought her his very favorite thing in the world: his grey/blue fuzzy security blanket and spread it over her legs. It's completely shocking and awesome every time he does something like this. It shows that 1. that he's aware of how she feels 2. that he connects her crying with how he feels when he cries and 3. that he wants to help her feel better and connects that with what he does to make himself feel better. It's such a complex and socially advanced thing for him to do, but it seems so natural when he does it. He's a great big brother.
The other day, I left the living room to use the bathroom and Peej was in the bouncy chair and Boog was reading next to her. I came back to find him kissing her face. Granted, Boog kisses consist of him pushing his face really hard into yours until he's decided you've had enough, but regardless of the odd manner in which he kisses, the fact is that he was doing it...completely unprompted...and he was able to break his attention away from his beloved books to do it. Again, shocking and awesome.
Yes, he does spend a good portion of time ignoring her, and yes he does steal her baby blankets and Boppy (sometimes right from on top of her or out from under her) sometimes, so don't think he's the world's most amazing big brother or anything. Except he is, to me, because he's able to overcome such massive obstacles to connect with a being who makes no effort to connect with him.
I love this kid.
So, today I'd like to regale you with tales of the Boog and the Peej. Peej is my daughter (real name Pippa Jane, but she's rarely ever called that around here), 7 weeks old and HUGE! She is the sweetest, funniest, chubbiest little girl in the world. What's more, she sleeps! I mean, she SLEEPS! She started sleeping through the night last week. I woke up the first morning she did that, 8 hours after falling asleep, and went, "What the WHAT?!" Anyway...
Some of you may recall that I had a certain amount of trepidation at the thought of Boog becoming a big brother. He had been less than gentle with his baby dolls (as in, 'Hello, Miss Baby Doll, would you enjoy a flight across the room without an airplane?') and I feared that did not bode well for the Peej. Well, I have since learned, that, duh Mom, the Boog knows the difference between a baby-powder scented baby-shaped block of plastic and an actual baby, and my fears have been (mostly) put to rest.
Mostly Boog seems fascinated and confused by Baby Sister. He spends a lot of time standing in front of her staring at her. If I was Peej, this would probably freak me right out as it's some seriously horror-movie-kid creepy kind of stuff, but Peej seems unfazed. The whole staring thing was possibly to be expected, but what I did not expect was how tender and considerate he would be with her.
Autistic kids are not known for their empathy skills, but Boog has always transcended that stereotype by being remarkably aware of other people's emotions despite his lack of communication skills. I did not, however, expect him to be able to relate to a newborn who doesn't act like a reasonable adult. I should really stop expecting him to do or not do things...
He brings her things when she cries. Let me say that again. He BRINGS her things when she cries. He brings her his favorite books and holds them up for her to look at. He brings her his Tickle-me-Elmo and holds him to her face so he can "kiss" her like Boog likes to do to himself. Once, he even brought her his very favorite thing in the world: his grey/blue fuzzy security blanket and spread it over her legs. It's completely shocking and awesome every time he does something like this. It shows that 1. that he's aware of how she feels 2. that he connects her crying with how he feels when he cries and 3. that he wants to help her feel better and connects that with what he does to make himself feel better. It's such a complex and socially advanced thing for him to do, but it seems so natural when he does it. He's a great big brother.
The other day, I left the living room to use the bathroom and Peej was in the bouncy chair and Boog was reading next to her. I came back to find him kissing her face. Granted, Boog kisses consist of him pushing his face really hard into yours until he's decided you've had enough, but regardless of the odd manner in which he kisses, the fact is that he was doing it...completely unprompted...and he was able to break his attention away from his beloved books to do it. Again, shocking and awesome.
Yes, he does spend a good portion of time ignoring her, and yes he does steal her baby blankets and Boppy (sometimes right from on top of her or out from under her) sometimes, so don't think he's the world's most amazing big brother or anything. Except he is, to me, because he's able to overcome such massive obstacles to connect with a being who makes no effort to connect with him.
I love this kid.
Thursday, March 17, 2011
Boog Diagnosis!
In my head there are trumpets blaring some sort of dramatic fanfare. Unfortunately there's no way to convey this over the Internet...oh yeah except for splicing in some kind of sound byte here...but I am way too much of an Internet dunce to figure that out...
Anyway, imagine a trumpet fanfare...ooh...or a big dramatic drum roll with those drums the size of a kitchen table...ooh...followed by the banging of a great, big gong...Okay, so I guess you get the point.
Ladies and gentlemen, we have a diagnosis!!!
We had our Boog Think Tank meeting today with Dr. Allen (the behavioral psych), Therese (Ry's EI teacher), Helen (our TEIS service coordinator), Dylan (father of Boog) and I (your sparkling narrator). We crowded into a tiny room at the Rehab Center and sat on child-sized chairs while the Boog spun in circles and shrieked in the center of the room. It was a very professional atmosphere.
Anyway, so Dr. Allen asked Therese to talk about Ry, and then he asked Dylan and I to talk about Ry, and then he read some statements he took from Ry's OT and ST, and then he read us the results of the testing he did at our last session and the tests Dylan and I filled out at home and sent him. The end result of all of this information was an actual diagnosis! I had no idea we would be coming out of there with a diagnosis! Here is the Boog's official alphabet soup diagnosis:
PDD/NOS with SPD and probable apraxia/dyspraxia
You might be saying to yourself, "What the heck does that mean?" Well, if you've been reading the Boog blog, you should already know what SPD is (sensory processing disorder), and you should know he was diagnosed with that ages ago. Apraxia and dyspraxia are motor planning disorders, which fit nicely with the Boog's severe speech and fine motor delays, but unfortunately he's not quite old enough or advanced enough in the areas of fine motor and speech to officially diagnose him with either of those disorders yet, so we'll be doing more testing on that front when he gets a little older. I've suspected since he was about 18 months old that he has apraxia, so we've done a bit of research on it and that was no surprise.
Now for PDD/NOS, which is the new kid on the block. PDD/NOS is basically code for " on the spectrum, and not quite autistic, but pretty darn close". Basically, Dr. Allen ran some tests in which Ry would have to have scored at least 70% to be diagnosed with Asperger's or classic ASD. Ry scored 60%, but he clearly fits some of the classic autistic patterns, hence PDD/NOS.
At this point you might be saying to yourself, "Now hold on, you sparkling narrator you, didn't you say Dr. Allen said he wasn't on the spectrum?" Well, yes. He apologized for not getting us this diagnosis sooner, but he said that the Boog is such a complex case that it was very difficult to separate out his other particular Boognesses from the PDD/NOS symptoms. In fact he reiterated that while he feels comfortable with the PDD/NOS diagnosis, he still thinks a better term for what the Boog has going on would be "Rylan Dittrich-Reed disorder". Heh. Don't we know it?!
We are thrilled. THRILLED! I'm not sure I can accurately describe the relief having a diagnosis gives us. We've already known the Boog has special needs for over a year now, so we don't have to deal with shock of diagnosis that most parents have to deal with at first. We've been struggling with a system (Early Intervention) that really wants to help us, but for bureaucratic reasons, without a specific diagnosis, many doors were closed to us. PDD/NOS blows them all wide open.
For example, we're going to get to go back to the PLC as long as they have an opening for Ry! Long-time readers may remember Miss Sabrina who the Boog worked with last year. She was affiliated with the PLC and she was fan-freakin'-tastic, but we had to discontinue services there because the Boog didn't have a diagnosis on the spectrum. Now we do (unfortunately, Miss Sabrina is moving away, but it's still a great place and we'd love to go back).
Also, there are some researchers on UT campus who are interested in working with kids on the spectrum. Guess what? Door open!
There are ABA method training programs (with scholarships!) in Nashville and Asheville for parents of kids on the spectrum. Door open!
Dr. Allen himself and his associates work primarily with kids on the spectrum (I think he's been following Ry just out of curiosity, haha). Door open!
Lastly, there is already a large support network in place nationwide for parents and families of kids on the spectrum. Dylan and I have felt kind of out of place in the special needs parent universe up until now. We had no labels for our little guy and thus no group to fall in with. Door open!
Basically, I think this diagnosis is the best thing to happen to all of us since sliced bread (which actually I don't care for, so that's a terrible comparison, but I'm too excited to think of another). We're really looking forward to the changes we can make in his existing out-of-home therapies and how we handle his at-home therapy practice to better suit his needs and to seeing what new forms of intervention we will now have access to.
It's a good day.
Anyway, imagine a trumpet fanfare...ooh...or a big dramatic drum roll with those drums the size of a kitchen table...ooh...followed by the banging of a great, big gong...Okay, so I guess you get the point.
Ladies and gentlemen, we have a diagnosis!!!
We had our Boog Think Tank meeting today with Dr. Allen (the behavioral psych), Therese (Ry's EI teacher), Helen (our TEIS service coordinator), Dylan (father of Boog) and I (your sparkling narrator). We crowded into a tiny room at the Rehab Center and sat on child-sized chairs while the Boog spun in circles and shrieked in the center of the room. It was a very professional atmosphere.
Anyway, so Dr. Allen asked Therese to talk about Ry, and then he asked Dylan and I to talk about Ry, and then he read some statements he took from Ry's OT and ST, and then he read us the results of the testing he did at our last session and the tests Dylan and I filled out at home and sent him. The end result of all of this information was an actual diagnosis! I had no idea we would be coming out of there with a diagnosis! Here is the Boog's official alphabet soup diagnosis:
PDD/NOS with SPD and probable apraxia/dyspraxia
You might be saying to yourself, "What the heck does that mean?" Well, if you've been reading the Boog blog, you should already know what SPD is (sensory processing disorder), and you should know he was diagnosed with that ages ago. Apraxia and dyspraxia are motor planning disorders, which fit nicely with the Boog's severe speech and fine motor delays, but unfortunately he's not quite old enough or advanced enough in the areas of fine motor and speech to officially diagnose him with either of those disorders yet, so we'll be doing more testing on that front when he gets a little older. I've suspected since he was about 18 months old that he has apraxia, so we've done a bit of research on it and that was no surprise.
Now for PDD/NOS, which is the new kid on the block. PDD/NOS is basically code for " on the spectrum, and not quite autistic, but pretty darn close". Basically, Dr. Allen ran some tests in which Ry would have to have scored at least 70% to be diagnosed with Asperger's or classic ASD. Ry scored 60%, but he clearly fits some of the classic autistic patterns, hence PDD/NOS.
At this point you might be saying to yourself, "Now hold on, you sparkling narrator you, didn't you say Dr. Allen said he wasn't on the spectrum?" Well, yes. He apologized for not getting us this diagnosis sooner, but he said that the Boog is such a complex case that it was very difficult to separate out his other particular Boognesses from the PDD/NOS symptoms. In fact he reiterated that while he feels comfortable with the PDD/NOS diagnosis, he still thinks a better term for what the Boog has going on would be "Rylan Dittrich-Reed disorder". Heh. Don't we know it?!
We are thrilled. THRILLED! I'm not sure I can accurately describe the relief having a diagnosis gives us. We've already known the Boog has special needs for over a year now, so we don't have to deal with shock of diagnosis that most parents have to deal with at first. We've been struggling with a system (Early Intervention) that really wants to help us, but for bureaucratic reasons, without a specific diagnosis, many doors were closed to us. PDD/NOS blows them all wide open.
For example, we're going to get to go back to the PLC as long as they have an opening for Ry! Long-time readers may remember Miss Sabrina who the Boog worked with last year. She was affiliated with the PLC and she was fan-freakin'-tastic, but we had to discontinue services there because the Boog didn't have a diagnosis on the spectrum. Now we do (unfortunately, Miss Sabrina is moving away, but it's still a great place and we'd love to go back).
Also, there are some researchers on UT campus who are interested in working with kids on the spectrum. Guess what? Door open!
There are ABA method training programs (with scholarships!) in Nashville and Asheville for parents of kids on the spectrum. Door open!
Dr. Allen himself and his associates work primarily with kids on the spectrum (I think he's been following Ry just out of curiosity, haha). Door open!
Lastly, there is already a large support network in place nationwide for parents and families of kids on the spectrum. Dylan and I have felt kind of out of place in the special needs parent universe up until now. We had no labels for our little guy and thus no group to fall in with. Door open!
Basically, I think this diagnosis is the best thing to happen to all of us since sliced bread (which actually I don't care for, so that's a terrible comparison, but I'm too excited to think of another). We're really looking forward to the changes we can make in his existing out-of-home therapies and how we handle his at-home therapy practice to better suit his needs and to seeing what new forms of intervention we will now have access to.
It's a good day.
Tuesday, March 1, 2011
A Few Boog Answers?
At speech therapy this morning, I happened to glance over at Ry's goals sheet and notice that, oh my gosh, there's actually something written in that normally blank diagnosis box.
Bwah???
Ry's speech therapist never discussed a diagnosis with us, but there were two things written there: oral phase dysphagia and mixed receptive-expressive language disorder.
I'm not upset, because she did his re-evaluation a few weeks back and since then has been out sick, so I'm sure the substitute just didn't know to discuss the diagnoses with us. I am, however, surprised and happy that some component of his delays are being called something I can actually tell people, though, "He has sensory processing disorder, mixed receptive-expressive language disorder, and oral phase dysphagia" is quite a mouthful. I'm not sure how one even pronounces "dysphagia"...I digress...
For those of you who don't have degrees in speech pathology, here's what Dr. Google has to say about oral phase dysphagia and mixed receptive-expressive language disorder:
Oral phase dysphagia: Definition:
It is the inability to manipulate food and liquids in and through the mouth as a result of chewing difficulties, weaknesses and discoordination of tongue, and/or reduction in labial and buccal muscle tension and tone.
There are two types of oral phase dysphagia: apraxia of swallow/reduced oral sensation and reduced labial tension/tone, out of which I'm betting he has the former (who said he had apraxia of some kind, like a year ago, oh yeah, that's right, ME! Mama's intuition, baby).
Mixed receptive-expressive language disorder: In general, mixed receptive-expressive language disorder is characterized by a child's difficulty with spoken communication. The child does not have problems with the pronunciation of words, which is found in phonological disorder . The child does, however, have problems constructing coherent sentences, using proper grammar, recalling words, or similar communication problems. A child with mixed receptive-expressive language disorder is not able to communicate thoughts, needs, or wants at the same level or with the same complexity as his or her peers. In addition, the child often has a smaller vocabulary than his or her peers.
Children with mixed receptive-expressive language disorder also have significant problems understanding what other people are saying to them. This lack of comprehension may result in inappropriate responses or failure to follow directions. Some people think these children are being deliberately stubborn or obnoxious, but this is not the case. They simply do not understand what is being said. Some children with this disorder have problems understanding such specific types of terms as abstract nouns, complex sentences, or spatial terms.
Yup, well, he doesn't tend to understand a lot of what's said to him and he doesn't talk, so that seems to fit. Unfortunately, the prognosis for mixed R-E language disorder is not so good. Even with early intervention, he'll likely have problems communicating all his life. How much progress kids with this disorder make, though, varies widely, so we'll just have to wait and see how the Boog does.
I still think these are only part of the picture, because I'm convinced he has apraxia, since it often presents with major speech AND fine motor delays and he has both. He has motor planning problems all over his little body, and apraxia seems to fit that.
It will be interesting to see what UT Hearing and Speech says when we get him evaluated there. For now, though, more puzzle pieces always make Mama happy :).
Bwah???
Ry's speech therapist never discussed a diagnosis with us, but there were two things written there: oral phase dysphagia and mixed receptive-expressive language disorder.
I'm not upset, because she did his re-evaluation a few weeks back and since then has been out sick, so I'm sure the substitute just didn't know to discuss the diagnoses with us. I am, however, surprised and happy that some component of his delays are being called something I can actually tell people, though, "He has sensory processing disorder, mixed receptive-expressive language disorder, and oral phase dysphagia" is quite a mouthful. I'm not sure how one even pronounces "dysphagia"...I digress...
For those of you who don't have degrees in speech pathology, here's what Dr. Google has to say about oral phase dysphagia and mixed receptive-expressive language disorder:
Oral phase dysphagia: Definition:
It is the inability to manipulate food and liquids in and through the mouth as a result of chewing difficulties, weaknesses and discoordination of tongue, and/or reduction in labial and buccal muscle tension and tone.
There are two types of oral phase dysphagia: apraxia of swallow/reduced oral sensation and reduced labial tension/tone, out of which I'm betting he has the former (who said he had apraxia of some kind, like a year ago, oh yeah, that's right, ME! Mama's intuition, baby).
Mixed receptive-expressive language disorder: In general, mixed receptive-expressive language disorder is characterized by a child's difficulty with spoken communication. The child does not have problems with the pronunciation of words, which is found in phonological disorder . The child does, however, have problems constructing coherent sentences, using proper grammar, recalling words, or similar communication problems. A child with mixed receptive-expressive language disorder is not able to communicate thoughts, needs, or wants at the same level or with the same complexity as his or her peers. In addition, the child often has a smaller vocabulary than his or her peers.
Children with mixed receptive-expressive language disorder also have significant problems understanding what other people are saying to them. This lack of comprehension may result in inappropriate responses or failure to follow directions. Some people think these children are being deliberately stubborn or obnoxious, but this is not the case. They simply do not understand what is being said. Some children with this disorder have problems understanding such specific types of terms as abstract nouns, complex sentences, or spatial terms.
Yup, well, he doesn't tend to understand a lot of what's said to him and he doesn't talk, so that seems to fit. Unfortunately, the prognosis for mixed R-E language disorder is not so good. Even with early intervention, he'll likely have problems communicating all his life. How much progress kids with this disorder make, though, varies widely, so we'll just have to wait and see how the Boog does.
I still think these are only part of the picture, because I'm convinced he has apraxia, since it often presents with major speech AND fine motor delays and he has both. He has motor planning problems all over his little body, and apraxia seems to fit that.
It will be interesting to see what UT Hearing and Speech says when we get him evaluated there. For now, though, more puzzle pieces always make Mama happy :).
Thursday, February 24, 2011
Sick Boog
The Boog has been sick this week, though he's getting better now, and this experience, like all experiences in parenting, has been a learning experience for Mama. The first thing I learned is that my less-medical-intervention-is-more attitude can sometimes get us into trouble and maybe I don't have everything figured out and my hippy ass can stand to learn some things before I get CPS called on me.
I'll explain. I'm one of those mamas who secretly snickers at the mamas who bring their kids to the pediatrician for every little sniffle. My opinion generally is that either a. you're wasting your time and the doctor's time and paying whatever God-awful amount your particular swindling insurance company charges as a co-pay to hear your child has a cold. Duh. Give the kid some Vicks and chicken soup and get over it, or b. you're about to annoy the doctor so much that s/he's going to prescribe your child unnecessary medication (usually antibiotics) to get rid of you thus flushing your child's system of useful bacteria and contributing to the worldwide problem of super-bugs.
I like to think this attitude is a carefully considered, naturalistic approach to health...but it may be more along the lines of a "there's no crying in baseball"-suck-it-up-survival-of-the-fittest attitude that I almost certainly inherited from my mother who is friggin' tough as nails. Seriously. Don't start a fight with my mom. You can't take her.
Anyway, so when Boog woke up Monday morning with a low fever (100.9) and a weird raspy cough, Dylan (a fellow survival-of-the-fittest fanatic) and I decided we would watch him and see how things went and if he wasn't better by Wednesday morning, I'd call the pediatrician.
So, I watched him. He ate, he drank, he played and read. He seemed fairly normal, except for this awful raspy quality to his breathing. I medicated his fever when it got above 101, and I figured he had a bad cold and he'd ride it out.
Oops.
Tuesday morning he woke up sounding even worse. He breathed like an elderly lifelong chain smoker. He didn't want to do much other than snuggle his favorite blankie and watch TV. This is when the mommy alarm bells started going off (admittedly a bit late). I looked up his symptoms on dear old Dr. Google and figured that he probably had croup. Ick. I had it as a kid and I still remember how awful it was. I remembered a few home treatments for croup - shower steam, cold misty air, going outside, so I figured I'd take him into the bathroom with me while I took a shower and see if that helped.
It didn't. This is when I called the pediatrician. They were, of course, booked for the day, but after doing imitations of Ry's breathing for the receptionist and the advice nurse (I felt like I was auditioning for the part of Gollem in LOTR), I was able to get them to agree to call me if they had a cancellation, which they did an hour or so later.
When we got to the doctor's office the Boog was, of course, breathing normally. The nurse who I had hassled into getting the appointment for him somewhat crossly took his O2 sats, which were an acceptable 96 and said, "It sounds like an upper respiratory infection to me" (AKA It's a cold, you moron, go buy some chicken soup and never call me again). Luckily, just before the doctor came into the room, Boog started with the Gollem-chain smoker breathing again. The doctor came in with wide eyes and said, "How long has he been breathing like that?" I, somewhat casually, answered, "On and off since yesterday morning,", at which point I received a look that said, "Oh my God, you heartless woman, how could you not have sought medical attention before now?"
He then said, "Well, I'm going to listen to his lungs and look at his ears and throat just to be sure, but he definitely has croup and at this point I'm trying to decide whether to send you to the ER or recommend that Children's just goes ahead and admits him."
Hold up. Admits him? Holy crap! I felt like I had a "Worst Mother Ever" sign blinking in flashing neon above my head for all to see. In the end we didn't end up getting admitted, but we were walked down to the Children's ER by a medical assistant (which the doctor said was a precaution in case the Boog needed medical attention along the way, but which I half-fear was a measure to insure the Boog's heartless mother didn't decide to make him suck it up and drive off with her seriously ill child).
Best Daddy of the Year award goes to Dylan, who I called from the doctor's office and who immediately dropped what he was doing (assisting in a lab) and literally ran over to the Children's ER without bothering to stop at his office for his bike or his stuff.
At the ER, they gave the Boog a breathing treatment (a joy for the poor respiratory therapist - note: kids with SPD do NOT react kindly to having things shoved in their faces), attempted to give him a popsicle (which we confiscated because it contained dairy and which was way too cold for the Boog's little SPD mouth to handle), a sippy full of ice water (which we poured into the Boog's own cup when the nurse wasn't looking - leaving the ice - because the Boog flatly refused to drink from the unfamiliar cup and the ice was too cold), and some toy trucks (AKA occupational therapy torture devices). Basically, we let the nurse think she was helping and then employed our own Boog comfort methods (Daddy cuddles, room temperature water, and books) when she left the room.
After a couple of hours, the stridor (scary breathing) was gone and they released us with strict instructions to return if he got bad again. Luckily, it hasn't come to that.
The other thing I learned from this experience is that goshdarnit I should stop expecting my child to behave like other children would in the same situation because he is very, very different. For example, he showed no major signs of distress, even when the stridor was bad. Most other kids would probably panic or at least behave strangely. The Boog was just a little sleepier and a little cuddlier.
Also, at first, I didn't think it could be croup, because the symptoms of croup are supposed to peak at night and the Boog's symptoms were worst in the early afternoons and actually improved as the day went on to the point that he was sleeping comfortably at night. Who the heck knows why he got the ultra-rare daytime croup? The point is that in the future, I need to listen to my gut (which, honestly, was in knots the minute I heard him breathing funny Monday morning), and understand that with the Boog, just because it doesn't walk like a duck or quack like a duck, that doesn't mean it's not a duck.
Yup. Lessons learned. Boog on the mend. All is right with the world again...or getting righter anyway.
I'll explain. I'm one of those mamas who secretly snickers at the mamas who bring their kids to the pediatrician for every little sniffle. My opinion generally is that either a. you're wasting your time and the doctor's time and paying whatever God-awful amount your particular swindling insurance company charges as a co-pay to hear your child has a cold. Duh. Give the kid some Vicks and chicken soup and get over it, or b. you're about to annoy the doctor so much that s/he's going to prescribe your child unnecessary medication (usually antibiotics) to get rid of you thus flushing your child's system of useful bacteria and contributing to the worldwide problem of super-bugs.
I like to think this attitude is a carefully considered, naturalistic approach to health...but it may be more along the lines of a "there's no crying in baseball"-suck-it-up-survival-of-the-fittest attitude that I almost certainly inherited from my mother who is friggin' tough as nails. Seriously. Don't start a fight with my mom. You can't take her.
Anyway, so when Boog woke up Monday morning with a low fever (100.9) and a weird raspy cough, Dylan (a fellow survival-of-the-fittest fanatic) and I decided we would watch him and see how things went and if he wasn't better by Wednesday morning, I'd call the pediatrician.
So, I watched him. He ate, he drank, he played and read. He seemed fairly normal, except for this awful raspy quality to his breathing. I medicated his fever when it got above 101, and I figured he had a bad cold and he'd ride it out.
Oops.
Tuesday morning he woke up sounding even worse. He breathed like an elderly lifelong chain smoker. He didn't want to do much other than snuggle his favorite blankie and watch TV. This is when the mommy alarm bells started going off (admittedly a bit late). I looked up his symptoms on dear old Dr. Google and figured that he probably had croup. Ick. I had it as a kid and I still remember how awful it was. I remembered a few home treatments for croup - shower steam, cold misty air, going outside, so I figured I'd take him into the bathroom with me while I took a shower and see if that helped.
It didn't. This is when I called the pediatrician. They were, of course, booked for the day, but after doing imitations of Ry's breathing for the receptionist and the advice nurse (I felt like I was auditioning for the part of Gollem in LOTR), I was able to get them to agree to call me if they had a cancellation, which they did an hour or so later.
When we got to the doctor's office the Boog was, of course, breathing normally. The nurse who I had hassled into getting the appointment for him somewhat crossly took his O2 sats, which were an acceptable 96 and said, "It sounds like an upper respiratory infection to me" (AKA It's a cold, you moron, go buy some chicken soup and never call me again). Luckily, just before the doctor came into the room, Boog started with the Gollem-chain smoker breathing again. The doctor came in with wide eyes and said, "How long has he been breathing like that?" I, somewhat casually, answered, "On and off since yesterday morning,", at which point I received a look that said, "Oh my God, you heartless woman, how could you not have sought medical attention before now?"
He then said, "Well, I'm going to listen to his lungs and look at his ears and throat just to be sure, but he definitely has croup and at this point I'm trying to decide whether to send you to the ER or recommend that Children's just goes ahead and admits him."
Hold up. Admits him? Holy crap! I felt like I had a "Worst Mother Ever" sign blinking in flashing neon above my head for all to see. In the end we didn't end up getting admitted, but we were walked down to the Children's ER by a medical assistant (which the doctor said was a precaution in case the Boog needed medical attention along the way, but which I half-fear was a measure to insure the Boog's heartless mother didn't decide to make him suck it up and drive off with her seriously ill child).
Best Daddy of the Year award goes to Dylan, who I called from the doctor's office and who immediately dropped what he was doing (assisting in a lab) and literally ran over to the Children's ER without bothering to stop at his office for his bike or his stuff.
At the ER, they gave the Boog a breathing treatment (a joy for the poor respiratory therapist - note: kids with SPD do NOT react kindly to having things shoved in their faces), attempted to give him a popsicle (which we confiscated because it contained dairy and which was way too cold for the Boog's little SPD mouth to handle), a sippy full of ice water (which we poured into the Boog's own cup when the nurse wasn't looking - leaving the ice - because the Boog flatly refused to drink from the unfamiliar cup and the ice was too cold), and some toy trucks (AKA occupational therapy torture devices). Basically, we let the nurse think she was helping and then employed our own Boog comfort methods (Daddy cuddles, room temperature water, and books) when she left the room.
After a couple of hours, the stridor (scary breathing) was gone and they released us with strict instructions to return if he got bad again. Luckily, it hasn't come to that.
The other thing I learned from this experience is that goshdarnit I should stop expecting my child to behave like other children would in the same situation because he is very, very different. For example, he showed no major signs of distress, even when the stridor was bad. Most other kids would probably panic or at least behave strangely. The Boog was just a little sleepier and a little cuddlier.
Also, at first, I didn't think it could be croup, because the symptoms of croup are supposed to peak at night and the Boog's symptoms were worst in the early afternoons and actually improved as the day went on to the point that he was sleeping comfortably at night. Who the heck knows why he got the ultra-rare daytime croup? The point is that in the future, I need to listen to my gut (which, honestly, was in knots the minute I heard him breathing funny Monday morning), and understand that with the Boog, just because it doesn't walk like a duck or quack like a duck, that doesn't mean it's not a duck.
Yup. Lessons learned. Boog on the mend. All is right with the world again...or getting righter anyway.
Thursday, February 17, 2011
Boog Baffles Behaviorist
After much passive-aggressive phone nudging from myself, our service coordinator, and Ry's EI teacher, we finally got the follow-up appt. we were supposed to have with Dr. Allen, the child behavioral psychologist, in October. Yup. October. Lest you get too up in arms for me about the negligence of the medical system, I should confess that I did not call for the October appointment until October, which is a big no-no with specialists. I was busy, I was pregnant, mea culpa. Regardless, I do not think it should take 4 months and hassling from various members of Ry's service squad to get an appointment. Luckily, neither did Dr. Allen. He said that next time this happens, to tell the dippy secretary (I added the dippy...but she is) that we are an ongoing case and we need to be seen ASAP, because she tends to process everyone as a new patient regardless of what they say to her on the phone. I told you she was dippy. Anyway...
I have to say, I love this guy. We saw him twice last spring and I thought he was fantastic. First of all, he sits down with a notebook and TALKS to the parents for a long, long time and takes notes. I can't remember the last time I've seen a specialist whose nose wasn't buried in a laptop clacking away while muttering, "Uh huh, yup...okay..."
Secondly, he's actually interested in what the parents have to say. Too often I've been treated like a moron when bringing my child to a specialist. They often treat you like your child is a car and you're the clueless car owner who doesn't know the dipstick from the gear shaft (which, by the way, I don't, which is why I'm familiar with that kind of amused superiority). I may not have formal training in developmental delays, but I know my kid. It's my job to know my kid. I also know a decent amount about the types of therapy that work for my kid. Again, it's my job. It's nice to be treated like I have a brain in my head.
So, Dr. Allen talked to me for almost an hour about what's been going on with Ry for the past 10 months and did some testing with Ry (who spent the entire appt. running circles around the room and playing with certain testing toys while completely ignoring others), and he came to the conclusion that Rylan has...drum roll please...Rylan Dittrich-Reed disorder.
No, seriously.
He was utterly baffled. He kept asking me questions, being surprised by the answers, shaking his head and taking copious notes. He said Ry doesn't fit the autistic pattern, which is what he said before. He has some of the sensory profile of an autistic kid, but none of the social symptoms, and it's totally bizarre that Ry is so interested in faces. He makes eye contact a lot. He's interested in people. He finds ways to socialize even though he can't talk and has trouble with signs. He seeks social attention. It just doesn't fit. Dr. Allen said he isn't even comfortable labeling Ry "narrow-band autism" or PDD/NOS (pervasive developmental delay/not on the spectrum), because his behaviors just do not fit either pattern.
He also agreed that while Ry has SPD it does not explain the magnitude of his speech and fine motor delays. He is way, way behind in those areas, like a year-plus behind, which is a lot at his age, and the odd thing is that he doesn't show any interest in fine motor skills.
Dr. Allen was also struck by the remarkable inconsistencies in Ry's case. Ry exhibits some behaviors that are far beyond his age level and others that are far below his age level. Ry had behaviors like pointing at words that emerged early, were consistent for several months and then disappeared. Ry also has behaviors like babbling and signing that emerged at developmentally appropriate times and then disappeared and then came back and then disappeared and then came back and so on and so on. It is common for communication to disappear with autistic children, but the way Ry differs there is that his babbling and signs disappear and come back every couple of months and during the interim he is no less socially engaged than when he is babbling and signing. They are not periods of withdrawal, he just reverts to more non-verbal communication methods, but he is still interested in social activities, smiling, seeking hugs and attention, etc.
Yup, the Boog baffled the behaviorist. Just to be clear, this guy knows his stuff. He is the leading child behavioral psychologist in the entire region, and he knows more about typical and atypical child development than anyone else we've talked to so far. When I told Ry's EI teacher that Dr. Allen was perplexed, she said, "Thank God. At least we're all on the same page!"
So, where do we go from here? We've had so much testing done already that there's not a lot left to explore, but we still have a couple of diagnostic options on the table. The most promising of those is apraxia. He wants Ry to be tested by the UT Speech and Hearing Center because he said they're apraxia experts. Apraxia + SPD has been my bet since I learned about apraxia, so we'll see if Mommy's intuition counts for anything. Apart from that, he wants to meet with all of Ry's therapists, Ry's EI teacher, Ry's service coordinator, and us to discuss Rylan. At the age of 2, the Boog has inspired his first think tank. I have a good feeling about this kid.
He gave us a couple of extra techniques to incorporate into our at-home and rehab center therapy sessions. He also would like Ry to play one-on-one with other children his age as often as possible. Luckily, Ry has a great little friend, Hayden, to play with, and we're connecting and re-connecting with some other friends as well.
I wasn't discouraged by the nebulous outcome of the appointment, because that's pretty much what I'd expected. I had a teeny fantasy that we'd show up and Dr. Allen would immediately say, "Oh, this child definitely fits the autistic pattern now," and boom: diagnosis done, mystery over, but I was pretty sure that wouldn't happen. Dylan and I have joked about showing up at the child psychology dept. at UT and asking if anyone wants to take on an unusual case study. We actually may come to that if no answers arise from the new testing and the meeting.
Does diagnosis matter, you might ask. Well, yes and no. Obviously, the Boog is the Boog and he's absolutely marvelous and we love him justasheis, so in that sense it does not matter. However, in order to deal with the bureaucracy of the special needs world, diagnosis can matter very, very much. It can decide what type of treatment he is eligible for and even whether he's eligible for treatment at all. As of this point, all we have him diagnosed with is SPD with global developmental delay. Believe it or not some special ed programs and some insurance companies do not consider either of those to be treatable diagnoses. Right now, we're still with Early Intervention, so we're golden. This fall, however, he enters the school system and that's where things get murky. It would definitely smooth the way to have a diagnosis to present them with.
I'm looking forward to the next round of testing, and especially the big Boog think tank meeting. It's always fun to learn more about our mysterious little Boog!
I have to say, I love this guy. We saw him twice last spring and I thought he was fantastic. First of all, he sits down with a notebook and TALKS to the parents for a long, long time and takes notes. I can't remember the last time I've seen a specialist whose nose wasn't buried in a laptop clacking away while muttering, "Uh huh, yup...okay..."
Secondly, he's actually interested in what the parents have to say. Too often I've been treated like a moron when bringing my child to a specialist. They often treat you like your child is a car and you're the clueless car owner who doesn't know the dipstick from the gear shaft (which, by the way, I don't, which is why I'm familiar with that kind of amused superiority). I may not have formal training in developmental delays, but I know my kid. It's my job to know my kid. I also know a decent amount about the types of therapy that work for my kid. Again, it's my job. It's nice to be treated like I have a brain in my head.
So, Dr. Allen talked to me for almost an hour about what's been going on with Ry for the past 10 months and did some testing with Ry (who spent the entire appt. running circles around the room and playing with certain testing toys while completely ignoring others), and he came to the conclusion that Rylan has...drum roll please...Rylan Dittrich-Reed disorder.
No, seriously.
He was utterly baffled. He kept asking me questions, being surprised by the answers, shaking his head and taking copious notes. He said Ry doesn't fit the autistic pattern, which is what he said before. He has some of the sensory profile of an autistic kid, but none of the social symptoms, and it's totally bizarre that Ry is so interested in faces. He makes eye contact a lot. He's interested in people. He finds ways to socialize even though he can't talk and has trouble with signs. He seeks social attention. It just doesn't fit. Dr. Allen said he isn't even comfortable labeling Ry "narrow-band autism" or PDD/NOS (pervasive developmental delay/not on the spectrum), because his behaviors just do not fit either pattern.
He also agreed that while Ry has SPD it does not explain the magnitude of his speech and fine motor delays. He is way, way behind in those areas, like a year-plus behind, which is a lot at his age, and the odd thing is that he doesn't show any interest in fine motor skills.
Dr. Allen was also struck by the remarkable inconsistencies in Ry's case. Ry exhibits some behaviors that are far beyond his age level and others that are far below his age level. Ry had behaviors like pointing at words that emerged early, were consistent for several months and then disappeared. Ry also has behaviors like babbling and signing that emerged at developmentally appropriate times and then disappeared and then came back and then disappeared and then came back and so on and so on. It is common for communication to disappear with autistic children, but the way Ry differs there is that his babbling and signs disappear and come back every couple of months and during the interim he is no less socially engaged than when he is babbling and signing. They are not periods of withdrawal, he just reverts to more non-verbal communication methods, but he is still interested in social activities, smiling, seeking hugs and attention, etc.
Yup, the Boog baffled the behaviorist. Just to be clear, this guy knows his stuff. He is the leading child behavioral psychologist in the entire region, and he knows more about typical and atypical child development than anyone else we've talked to so far. When I told Ry's EI teacher that Dr. Allen was perplexed, she said, "Thank God. At least we're all on the same page!"
So, where do we go from here? We've had so much testing done already that there's not a lot left to explore, but we still have a couple of diagnostic options on the table. The most promising of those is apraxia. He wants Ry to be tested by the UT Speech and Hearing Center because he said they're apraxia experts. Apraxia + SPD has been my bet since I learned about apraxia, so we'll see if Mommy's intuition counts for anything. Apart from that, he wants to meet with all of Ry's therapists, Ry's EI teacher, Ry's service coordinator, and us to discuss Rylan. At the age of 2, the Boog has inspired his first think tank. I have a good feeling about this kid.
He gave us a couple of extra techniques to incorporate into our at-home and rehab center therapy sessions. He also would like Ry to play one-on-one with other children his age as often as possible. Luckily, Ry has a great little friend, Hayden, to play with, and we're connecting and re-connecting with some other friends as well.
I wasn't discouraged by the nebulous outcome of the appointment, because that's pretty much what I'd expected. I had a teeny fantasy that we'd show up and Dr. Allen would immediately say, "Oh, this child definitely fits the autistic pattern now," and boom: diagnosis done, mystery over, but I was pretty sure that wouldn't happen. Dylan and I have joked about showing up at the child psychology dept. at UT and asking if anyone wants to take on an unusual case study. We actually may come to that if no answers arise from the new testing and the meeting.
Does diagnosis matter, you might ask. Well, yes and no. Obviously, the Boog is the Boog and he's absolutely marvelous and we love him justasheis, so in that sense it does not matter. However, in order to deal with the bureaucracy of the special needs world, diagnosis can matter very, very much. It can decide what type of treatment he is eligible for and even whether he's eligible for treatment at all. As of this point, all we have him diagnosed with is SPD with global developmental delay. Believe it or not some special ed programs and some insurance companies do not consider either of those to be treatable diagnoses. Right now, we're still with Early Intervention, so we're golden. This fall, however, he enters the school system and that's where things get murky. It would definitely smooth the way to have a diagnosis to present them with.
I'm looking forward to the next round of testing, and especially the big Boog think tank meeting. It's always fun to learn more about our mysterious little Boog!
Friday, January 14, 2011
Boog Mush
Okay, I'm not usually a fan of sappy blog posts, especially sappy blog posts about kids, and super-especially sappy blog posts about kids with special needs. You know the kind: "And as I saw Jimmy taking his first step, a great swell of joy burst in my heart. I heard music as if from a heavenly chorus and I knew that everything would be all right." Ick, right? Those are the kinds of blog posts I come away from thinking, "Gosh, I think I was right when I was childless and thought all mothers got lobotomies with their epidurals."
Parenting is such a humbling experience. I'm about to write one of those blog posts.
Blame it on the pregnancy hormones. Blame it on a Pandora station I've crafted so carefully that it seems to know exactly what I want to hear at any given moment. Blame it on the fact that I spent half the afternoon reading "magical" Bradley birth stories, if you will, but rest assured, my entire brain is fully intact...as far as I know...
This requires a little bit of background...
So, we've been playing this game with Ry at speech therapy and during our at-home therapy practices that involves those rainbow-colored stacking rings. It started with Ashley, Ry's ST, trying to get him to take off the stacking rings and put them back on and somehow morphed into this mess of silliness that he finds hilarious, which includes Ry taking the rings off one-by-one and handing them to Ashley or myself and then Ashley or myself putting the rings on our heads and saying, "Ah, ah, ah-choo" and nodding our heads so the rings fall onto Ry's tray, at which point he CRACKS UP. Don't ask. My kid is twisted.
Anyway, so this game was 100% responsible for Ry learning to hand things to people. The problem is that he has never been able to carry that lesson outside of therapy sessions or practice. The only time he's ever handed anything to anyone to initiate a game has been when he's sitting in a booster seat with tray and we've brought out the rings and instructed him to take them off and hand them to us...until today...
This afternoon, I got Ry up from his nap and we went in to the living room. He was reading a book on the floor and I was nursing my billionth pregnancy headache on the couch with a glass of water. Suddenly, he turned and saw his stacking rings. He abandoned the book (this alone is a huge deal, I've rarely ever seen him abandon a book, especially a Dr. Seuss) and grabbed the rings and started taking them off the post and then (amazing thing #2) putting them back on! He's never ever put things back where they go before. He's Mr. Destructo. He comes into a room, pulls it apart to find the thing he wants, and then he leaves with that thing.
After he'd taken the rings off and put them back on a few times, he grabbed the blue one, stood up, walked across the room to me, and PUT IT IN MY HANDS. To put this in severely-speech-delayed kid terms, that's a request to play. He had never done anything like that before. We're generally lucky if we can get him to look up when we say his name while he's playing alone. He has never sought anyone out to play with an object before! I obliged by putting the ring on my head and saying "Ah, ah, ah-choo" and knocking it off. He cracked up. Then, he chased down the ring, and brought it back and put it back in my hands!
He did this again and again, much to my amazement. As we finished the game after about the 10th repetition, and he started to walk away from me, stupid Pandora started playing "Upward Over the Mountain" by Iron and Wine and I lost it. It's a song sung by a son to his mother, and despite its clearly much more mature subject matter, I've always associated it with me and Ry. For those of you who haven't heard it, I'll copy the lyrics here (oh Lord, song lyrics, too? I feel like a 16 year old girl writing about her boyfriend...this is the epitome of sappiness...), but you should really head on over to www.ironandwine.com, look under music for the album Creek Drank the Cradle and listen to it. It's beautiful.
Mother don't worry, I killed the last snake that lived in the creek bed
Mother don't worry, I've got some money I saved for the weekend
Mother remember being so stern with that girl who was with me
Mother remember the blink of an eye when I breathed through your body
So may the sunrise bring hope where it once was forgotten
Sons are like birds flying upwards over the mountain
Mother I made it up from the bruise on the floor of this prison
Mother I lost it all of the fear of the Lord I was given
Mother forget me now that the creek drank the cradle you sang to
Mother forgive me I sold your car for the shoes that I gave you
So may the sunrise bring hope where it once was forgotten
Sons can be birds taken broken up to the mountain
Mother don't worry I've got a coat and some friends on the corner
Mother don't worry she's got a garden we're planting together
Mother remember the night that the dog had her pups in the pantry
Blood on the floor and the fleas in their paws
And you cried 'til the morning
So may the sunrise bring hope where it once was forgotten
Sons are like birds flying always over the mountain
So, there I was sobbing like a big, pregnant baby over stacking rings and song lyrics and to tell you the truth, even the cynical realist in me didn't care. It was a tiny moment, but it was huge for me. I felt this weight lifted off at the first "Mother don't worry". Sometimes we're going to carry him broken, and sometimes he's going to fly on his own, but he's going to be all right.
Parenting is such a humbling experience. I'm about to write one of those blog posts.
Blame it on the pregnancy hormones. Blame it on a Pandora station I've crafted so carefully that it seems to know exactly what I want to hear at any given moment. Blame it on the fact that I spent half the afternoon reading "magical" Bradley birth stories, if you will, but rest assured, my entire brain is fully intact...as far as I know...
This requires a little bit of background...
So, we've been playing this game with Ry at speech therapy and during our at-home therapy practices that involves those rainbow-colored stacking rings. It started with Ashley, Ry's ST, trying to get him to take off the stacking rings and put them back on and somehow morphed into this mess of silliness that he finds hilarious, which includes Ry taking the rings off one-by-one and handing them to Ashley or myself and then Ashley or myself putting the rings on our heads and saying, "Ah, ah, ah-choo" and nodding our heads so the rings fall onto Ry's tray, at which point he CRACKS UP. Don't ask. My kid is twisted.
Anyway, so this game was 100% responsible for Ry learning to hand things to people. The problem is that he has never been able to carry that lesson outside of therapy sessions or practice. The only time he's ever handed anything to anyone to initiate a game has been when he's sitting in a booster seat with tray and we've brought out the rings and instructed him to take them off and hand them to us...until today...
This afternoon, I got Ry up from his nap and we went in to the living room. He was reading a book on the floor and I was nursing my billionth pregnancy headache on the couch with a glass of water. Suddenly, he turned and saw his stacking rings. He abandoned the book (this alone is a huge deal, I've rarely ever seen him abandon a book, especially a Dr. Seuss) and grabbed the rings and started taking them off the post and then (amazing thing #2) putting them back on! He's never ever put things back where they go before. He's Mr. Destructo. He comes into a room, pulls it apart to find the thing he wants, and then he leaves with that thing.
After he'd taken the rings off and put them back on a few times, he grabbed the blue one, stood up, walked across the room to me, and PUT IT IN MY HANDS. To put this in severely-speech-delayed kid terms, that's a request to play. He had never done anything like that before. We're generally lucky if we can get him to look up when we say his name while he's playing alone. He has never sought anyone out to play with an object before! I obliged by putting the ring on my head and saying "Ah, ah, ah-choo" and knocking it off. He cracked up. Then, he chased down the ring, and brought it back and put it back in my hands!
He did this again and again, much to my amazement. As we finished the game after about the 10th repetition, and he started to walk away from me, stupid Pandora started playing "Upward Over the Mountain" by Iron and Wine and I lost it. It's a song sung by a son to his mother, and despite its clearly much more mature subject matter, I've always associated it with me and Ry. For those of you who haven't heard it, I'll copy the lyrics here (oh Lord, song lyrics, too? I feel like a 16 year old girl writing about her boyfriend...this is the epitome of sappiness...), but you should really head on over to www.ironandwine.com, look under music for the album Creek Drank the Cradle and listen to it. It's beautiful.
Mother don't worry, I killed the last snake that lived in the creek bed
Mother don't worry, I've got some money I saved for the weekend
Mother remember being so stern with that girl who was with me
Mother remember the blink of an eye when I breathed through your body
So may the sunrise bring hope where it once was forgotten
Sons are like birds flying upwards over the mountain
Mother I made it up from the bruise on the floor of this prison
Mother I lost it all of the fear of the Lord I was given
Mother forget me now that the creek drank the cradle you sang to
Mother forgive me I sold your car for the shoes that I gave you
So may the sunrise bring hope where it once was forgotten
Sons can be birds taken broken up to the mountain
Mother don't worry I've got a coat and some friends on the corner
Mother don't worry she's got a garden we're planting together
Mother remember the night that the dog had her pups in the pantry
Blood on the floor and the fleas in their paws
And you cried 'til the morning
So may the sunrise bring hope where it once was forgotten
Sons are like birds flying always over the mountain
So, there I was sobbing like a big, pregnant baby over stacking rings and song lyrics and to tell you the truth, even the cynical realist in me didn't care. It was a tiny moment, but it was huge for me. I felt this weight lifted off at the first "Mother don't worry". Sometimes we're going to carry him broken, and sometimes he's going to fly on his own, but he's going to be all right.
Wednesday, January 12, 2011
The Mysterious Boog
I've had so many requests for a new Boog blog that I eventually had to come out of cyber-nation (get it, get it...okay, so I like puns) and think of something to write about. He's doing a lot of great things lately, mostly gross-motor related, but the mystery of it all is what's weighing on my mind lately.
He walks now! He climbs stairs and ladders and furniture. He spins in circles. He's *this* close to figuring out running. He's using the potty without protest a couple of times a day (though with a lot of help, mostly because he can't get his pants off by himself). He's about to friggin' graduate from PT because his therapist runs through several new tasks a week that he aces no problem (there's nothing funnier than the nonchalant expression on his face when you cheer for him. He's like, "Oh this? This is no big deal," or possibly, "Yes, clearly I'm awesome. I don't need your applause to confirm that.").
So, clearly he's made massive progress in the past couple of months. However, he is still no closer to talking or doing apparently-extremely-important-but-seemingly-inane fine motor tasks like stacking blocks, hitting things with a hammer, or rolling cars back and forth, and no one has any idea WHY.
The geneticist has basically cleared us after our third round of testing. The micro-array is still on the table as a possibility, but she didn't seem terribly hopeful that it would tell us anything significant.
We've actually stopped seeing the neurologist out of sheer frustration, because every time we go the only things he does are: 1. Suggest we put Ry in day care, as if he is only severely speech and fine motor delayed because he doesn't spend enough time with his peers. 2. Try to discourage us from having more children, and 3. Stare pointedly at my boobs. In my current pregnant state I fear another visit would just result in an overwhelming incidence of actions 2 and 3, so we just didn't schedule the most recent follow-up.
We were supposed to see the behavioral psychologist who specializes in autism for a follow-up in October, but when I called to make an appointment, I was told by his secretary (a woman who I have come to loathe, possibly through no fault of her own) that he had no openings in the current scheduling quarter, and she put us on the waiting list. Fast forward to three months later, and the Boog's still no closer to getting in to seeing him. I do occasionally see him at the Co-op and have considered mildly kidnapping him for a parking lot consultation. Regardless, though, he seemed pretty convinced last time that autism was not the issue here.
His therapists are mystified. They're all fantastic and have managed to find ways to get through to him and motivate him, but they seem no clearer on the actual cause of his delays than I am.
Here's what we know:
1. He definitely has SPD, which manifests itself mainly in underresponsiveness to most stimuli, oversensitivity in his hands and mouth, and overresponsiveness to certain textures. This alone, though, is unlikely to cause such severe delays.
2. He has good receptive communication skills for a child with expressive skills as severely delayed as his are. He can understand a LOT of what's said to him, what's going on around him and he's a surprisingly good problem solver.
3. He has the ability to communicate verbally and non-verbally, but seems to use it only intermittently. He has produced around 10 signs with regularity for a few weeks here and there over the past year. He also intermittently coos, babbles with several different consonant and vowel sounds, and has even said around 5 words during some of these verbal periods. The thing is, the communicative periods generally last a few weeks and then they disappear for a month or two, so he never has a chance to make much progress. However, during the times that he's non-verbal and not using many signs, he's no more withdrawn than at other times. He still pays attention to speech directed at him about 50-70% of the time (which is normal for him), plays the same games, gives all his hugs and kisses and signs of affection, he just regresses to more primitive forms of non-verbal communication.
4. When MOTIVATED, he can do just about any fine motor task he sets his mind to. He loves this game his speech therapist plays with the stacking rings, so he freely hands them to her when instructed to and follows the command to put them on his head (speech therapy gets pretty wacky when you have a kid as challenging as the Boog). However, despite the fact that he hears the same commands pertaining to other objects just as frequently, he will not follow those commands.
Also, he recently solved a mindbender puzzle intended for ages 8+ that involved manipulating one metal piece through another. Lest my doubtful readers think I'm being one of those psycho "my baby is 3 months and reading and feeding himself" mothers, I'd like to point out he's able to replicate those actions whenever he encounters the puzzle. However, he just will NOT put small blocks in a cup when directed to.
5. He is definitely on a slightly different plane from other humans, if you get my drift. He pays attention to things that other people routinely ignore, such as other people's hands and his own, things that are a certain shape or color or texture, a ticking clock, a shiny doorknob, etc. In fact, these things frequently distract him from his therapy tasks as they are SO much more interesting. Part of this visual distraction may be due to his motor nystagmus, and part of it is almost certainly due to his SPD. He does, however, also pay attention to things that other people do like people's faces, television, books, pets, babies, new items in his environment, etc.
6. He does not have Fragile X. He does not have any of the well-known metabolic disorders. He does not have auditory neuropathy. He does not have any chromosomally-linked genetic disorders. He does not display symptoms of many other major genetic disorders such as Angelman's. He is probably not on the spectrum. He was not born prematurely. He was not exposed to drugs or alcohol or large amounts of any known toxins while in the womb. His lead levels are normal. An MRI of his brain came back clean. He is not malnourished and never has been.
So, that's where we are. I'm planning on harassing the behavioral psychologist's poor secretary again soon to see if anything arises down that path. It is still possible he is autistic, but the psych seemed to think it was a long shot given the Boog's social nature and his motor problems. Other than that, I'm not sure where else to go. We've pretty much exhausted the medical route (and our savings account).
It's not a problem not knowing what's going on with him...except when it is. It's human nature to seek answers, to seek labels, to want to categorize. It provides us with comfort, and an illusion of understanding. I love the Boog. I think he's the most fantastic kid ever to walk the planet and I find his differences intriguing and challenging. Nevertheless, it would be nice to be able to say when people ask, "Oh, he has such-and-such," because as long as he's different, they will always ask.
He walks now! He climbs stairs and ladders and furniture. He spins in circles. He's *this* close to figuring out running. He's using the potty without protest a couple of times a day (though with a lot of help, mostly because he can't get his pants off by himself). He's about to friggin' graduate from PT because his therapist runs through several new tasks a week that he aces no problem (there's nothing funnier than the nonchalant expression on his face when you cheer for him. He's like, "Oh this? This is no big deal," or possibly, "Yes, clearly I'm awesome. I don't need your applause to confirm that.").
So, clearly he's made massive progress in the past couple of months. However, he is still no closer to talking or doing apparently-extremely-important-but-seemingly-inane fine motor tasks like stacking blocks, hitting things with a hammer, or rolling cars back and forth, and no one has any idea WHY.
The geneticist has basically cleared us after our third round of testing. The micro-array is still on the table as a possibility, but she didn't seem terribly hopeful that it would tell us anything significant.
We've actually stopped seeing the neurologist out of sheer frustration, because every time we go the only things he does are: 1. Suggest we put Ry in day care, as if he is only severely speech and fine motor delayed because he doesn't spend enough time with his peers. 2. Try to discourage us from having more children, and 3. Stare pointedly at my boobs. In my current pregnant state I fear another visit would just result in an overwhelming incidence of actions 2 and 3, so we just didn't schedule the most recent follow-up.
We were supposed to see the behavioral psychologist who specializes in autism for a follow-up in October, but when I called to make an appointment, I was told by his secretary (a woman who I have come to loathe, possibly through no fault of her own) that he had no openings in the current scheduling quarter, and she put us on the waiting list. Fast forward to three months later, and the Boog's still no closer to getting in to seeing him. I do occasionally see him at the Co-op and have considered mildly kidnapping him for a parking lot consultation. Regardless, though, he seemed pretty convinced last time that autism was not the issue here.
His therapists are mystified. They're all fantastic and have managed to find ways to get through to him and motivate him, but they seem no clearer on the actual cause of his delays than I am.
Here's what we know:
1. He definitely has SPD, which manifests itself mainly in underresponsiveness to most stimuli, oversensitivity in his hands and mouth, and overresponsiveness to certain textures. This alone, though, is unlikely to cause such severe delays.
2. He has good receptive communication skills for a child with expressive skills as severely delayed as his are. He can understand a LOT of what's said to him, what's going on around him and he's a surprisingly good problem solver.
3. He has the ability to communicate verbally and non-verbally, but seems to use it only intermittently. He has produced around 10 signs with regularity for a few weeks here and there over the past year. He also intermittently coos, babbles with several different consonant and vowel sounds, and has even said around 5 words during some of these verbal periods. The thing is, the communicative periods generally last a few weeks and then they disappear for a month or two, so he never has a chance to make much progress. However, during the times that he's non-verbal and not using many signs, he's no more withdrawn than at other times. He still pays attention to speech directed at him about 50-70% of the time (which is normal for him), plays the same games, gives all his hugs and kisses and signs of affection, he just regresses to more primitive forms of non-verbal communication.
4. When MOTIVATED, he can do just about any fine motor task he sets his mind to. He loves this game his speech therapist plays with the stacking rings, so he freely hands them to her when instructed to and follows the command to put them on his head (speech therapy gets pretty wacky when you have a kid as challenging as the Boog). However, despite the fact that he hears the same commands pertaining to other objects just as frequently, he will not follow those commands.
Also, he recently solved a mindbender puzzle intended for ages 8+ that involved manipulating one metal piece through another. Lest my doubtful readers think I'm being one of those psycho "my baby is 3 months and reading and feeding himself" mothers, I'd like to point out he's able to replicate those actions whenever he encounters the puzzle. However, he just will NOT put small blocks in a cup when directed to.
5. He is definitely on a slightly different plane from other humans, if you get my drift. He pays attention to things that other people routinely ignore, such as other people's hands and his own, things that are a certain shape or color or texture, a ticking clock, a shiny doorknob, etc. In fact, these things frequently distract him from his therapy tasks as they are SO much more interesting. Part of this visual distraction may be due to his motor nystagmus, and part of it is almost certainly due to his SPD. He does, however, also pay attention to things that other people do like people's faces, television, books, pets, babies, new items in his environment, etc.
6. He does not have Fragile X. He does not have any of the well-known metabolic disorders. He does not have auditory neuropathy. He does not have any chromosomally-linked genetic disorders. He does not display symptoms of many other major genetic disorders such as Angelman's. He is probably not on the spectrum. He was not born prematurely. He was not exposed to drugs or alcohol or large amounts of any known toxins while in the womb. His lead levels are normal. An MRI of his brain came back clean. He is not malnourished and never has been.
So, that's where we are. I'm planning on harassing the behavioral psychologist's poor secretary again soon to see if anything arises down that path. It is still possible he is autistic, but the psych seemed to think it was a long shot given the Boog's social nature and his motor problems. Other than that, I'm not sure where else to go. We've pretty much exhausted the medical route (and our savings account).
It's not a problem not knowing what's going on with him...except when it is. It's human nature to seek answers, to seek labels, to want to categorize. It provides us with comfort, and an illusion of understanding. I love the Boog. I think he's the most fantastic kid ever to walk the planet and I find his differences intriguing and challenging. Nevertheless, it would be nice to be able to say when people ask, "Oh, he has such-and-such," because as long as he's different, they will always ask.
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