Last night, Emerald, Benjamin, and I went to the chili Christmas party at University Church of Christ. Emerald sang a few carols with the other children, there was a Cowboy Santa, and just troughs of homemade chili. We all enjoyed it a great deal.
Michael and I decided that Gabriel, having done so well in Bible Class and Children's Worship that morning, probably wouldn't tolerate a second, unfamiliar event, so they dropped us off at the church and went back home for dinner.
When it was time for Michael to come pick us back up, Gabriel slipped on a toy microphone that had been left on the floor of the living room. He laid there for a while, crying brokenly in a way that wrenched at Michael.
Gabriel has a heightened pain tolerance. The way it has been explained it to me--certain senses are so enhanced, such as his hearing, that he is unable to filter out any noise no matter how faint or innocuous. Things we can't even hear he cannot tune out, and it can get downright painful. Because of this unfiltered auditory assault, certain other inputs are overpowered. This would mean that his brain doesn't register pain as acutely as we might.
Whatever the reasoning, Gabe has a very high threshold for pain. He has burned his leg on a hot burner before and didn't even acknowledge it. If he does hurt, he usually responds with anger or annoyance. That is why Michael was so upset by Gabe's crying.
He contemplated taking Gabe to the ER, thinking he must have hurt his back from how he landed, but after a short while, Gabriel calmed down and walked out to the car. There was no sign of him being hurt for the rest of the evening. He did wake up at about 3.30; at 4, I came and laid down with him on the couch, which he liked a lot. Waking up at odd and early hours is hardly suspect; it is a weekly occurrence at our house.
The next morning, Gabriel resisted getting dressed and ready for school. Michael's worry increased, especially when Gabe fought being put on the bus, an activity he has historically looked forward to.
Gabriel's class has a nurse that tends to just the K2 and 3-5 classes that are adjacent, and she called me about 8.30. She said that she believed Gabriel's arm was broken. It was swollen and he was favoring it, not using it, though he was calm and happy and participating in class as normal otherwise. I sent Michael to pick him up from school while I called my dad to come watch Benjamin.
This is one of the hardest parts of having a nonverbal autistic child. Our goal for him is to have a consistent form of communication so that he can have his needs met. At his current functional level, he does not have that. He can't tell us if he is sleepy or hungry, needs a drink or a hug, or if his arm hurts. It frustrates him--you can see how exasperated he gets, trying to get what he wants when the words will simply just not come out. It is heartbreaking.
It is a horrible feeling to realize that you sent your child to school with two broken bones.
Michael drove him to the hospital, and I met them up there a short while later. You would expect him to be scared, overstimulated, in pain, agitated...something, but honestly he looked positively delighted that we had figured out what he was trying to tell us, and that he was getting to spend the day alone with Mommy and Daddy.
When Gabe is happy, when everything is right in the world, when he wants to play or laugh, he wants Michael. The vast majority of his life, he prefers Michael. That's how all three of my kids are; I am not terribly exciting or fun. But if they are tired or sick, if they are hurting or they need anything at all...that's when they need me. Gabriel was so happy to see me. Since I walked into that hospital, he has not stopped giving me hugs and kisses. That's why he will lay calmly with me on the couch for hours in the middle of the night,while he rolls and giggles and tries to roughhouse with Michael.
The doctor told us he broke both his radius and his ulna of his left arm. They were not displaced, so he does not need surgery, but they do not do casts in the hospital. Instead, they would place a temporary splint and we will get the cast put on by the orthopedic surgeon tomorrow. The only catch is that the location of the breaks have a high risk for becoming displaced, so we have to work especially hard to keep him from jarring it, falling on it, or traumatizing it. Which should be easy, with such a relaxed, lazy, gentle boy (I say sarcastically).
His teacher emailed me and said the only reason they knew that something was wrong was because he wouldn't swing when it was time, which is his favorite activity at school. I would be worried if I saw that he didn't want to swing either! She said that before that, he had walked in from the bus, sat down in his spot on the carpet for morning song and was carrying about his morning like he had every day for months.
It's kind of a scary thought, that. What happens if it is something much more serious and time-sensitive?? I will try not to think about that, and keep my eyes open to how my little guy acts. As it is, he is laying beside me on the couch, reaching up every two or three minutes to give me another hug. The sling he didn't have much patience for, but the splint he actually doesn't seem to mind.
I can't imagine a sweeter boy in the whole world, and I love him dearly.
--Andie
Monday, December 14, 2015
Friday, December 4, 2015
Creative Writing UIL
Emerald has been in UIL practice--University Interscholastic League--as part of her Advanced Academics program for the last several weeks.
She wanted to do Chess Puzzle, but you have to be a member of the chess team before they let you participate in that category. The only other two available to her age group were Storytelling and Creative Writing. Storytelling is where the children are read a story and have to retell it in their own words. A useful skill to be sure, but it didn't seem like the best fit for Emerald, so I convinced her that Creative Writing would be more fun.
In Creative Writing, the child is given five images and thirty minutes to create a story using any combination of the five pictures. At home, I gave her a journal and encouraged her to write for thirty minutes about anything--it can be a diary entry, a poem, story, prayer, lesson...it doesn't matter what she writes, as long as she is writing every day.
Today, she heard that she got a spot on the team that will actually compete at UIL in January.
She is beyond excited. She kept saying, "I hoped the judges would like my story, but I never believed I would be chosen!" I didn't even know they were deciding yet, but I am so proud of her.
This is the story she wrote; forgive spelling and punctuation. I transcribed it exactly (minus the pictures) so that I could remember how she wrote it :)
Original: The Little Rainbow
There was a little rainbow who wanted to explore the world. She wanted to ride the waves. She wanted to hide in the trees. And she woud get the reward to be the first rainbow who travled the world. Her friends called her Janice. Well, they woud, if Janice had any friends. Heres her problem. She wants to travle the world, right? but she can't. All she can do one thing: make kids happy after a rainy day. She just watchs the kids jump rope in the puddles.but wait. theirs more! When she peeks in a window she see's little girls laghing and criating funny puzzles. then thair was this girl named Josifina, it's pronounced like this ho-si-fee-na. She has a spanish name. One day she went out to cut some leaves. then she met Janice. So Josifina cut her off the grass, and helped her travle the world. It was wonderful! She rode the waves. She hid in the trees. And last but not least, she won a medle and a trophy for being the first rainbow to travle the world but she wasn't satisfide. So she gave her trophy to Josifina.
"The only thing I like doing more then travleing," she said, "is Giving!"
"Your my best friend, Janice." said Josifina. And she gave Janice a big hug. Janice was finaly the happyest rainbow in the entire land. that was because she was the first rainbow to have a best friend.
Eprolage
Janice and Josifina made other freinds and went to girl scouts. When they grew up, they married and had babies. Josifina had twins and a girl, Aurora, Prinie, and Angle. Janice had give babies, Lovly, Goodly, Sam, Jumbo, and Jumbo two. It was no doubt that they were the happyest ladies in the land. Or maybe even the galexy. They were happyer then a elf.
She wanted to do Chess Puzzle, but you have to be a member of the chess team before they let you participate in that category. The only other two available to her age group were Storytelling and Creative Writing. Storytelling is where the children are read a story and have to retell it in their own words. A useful skill to be sure, but it didn't seem like the best fit for Emerald, so I convinced her that Creative Writing would be more fun.
In Creative Writing, the child is given five images and thirty minutes to create a story using any combination of the five pictures. At home, I gave her a journal and encouraged her to write for thirty minutes about anything--it can be a diary entry, a poem, story, prayer, lesson...it doesn't matter what she writes, as long as she is writing every day.
Today, she heard that she got a spot on the team that will actually compete at UIL in January.
She is beyond excited. She kept saying, "I hoped the judges would like my story, but I never believed I would be chosen!" I didn't even know they were deciding yet, but I am so proud of her.
This is the story she wrote; forgive spelling and punctuation. I transcribed it exactly (minus the pictures) so that I could remember how she wrote it :)
Original: The Little Rainbow
There was a little rainbow who wanted to explore the world. She wanted to ride the waves. She wanted to hide in the trees. And she woud get the reward to be the first rainbow who travled the world. Her friends called her Janice. Well, they woud, if Janice had any friends. Heres her problem. She wants to travle the world, right? but she can't. All she can do one thing: make kids happy after a rainy day. She just watchs the kids jump rope in the puddles.but wait. theirs more! When she peeks in a window she see's little girls laghing and criating funny puzzles. then thair was this girl named Josifina, it's pronounced like this ho-si-fee-na. She has a spanish name. One day she went out to cut some leaves. then she met Janice. So Josifina cut her off the grass, and helped her travle the world. It was wonderful! She rode the waves. She hid in the trees. And last but not least, she won a medle and a trophy for being the first rainbow to travle the world but she wasn't satisfide. So she gave her trophy to Josifina.
"The only thing I like doing more then travleing," she said, "is Giving!"
"Your my best friend, Janice." said Josifina. And she gave Janice a big hug. Janice was finaly the happyest rainbow in the entire land. that was because she was the first rainbow to have a best friend.
Eprolage
Janice and Josifina made other freinds and went to girl scouts. When they grew up, they married and had babies. Josifina had twins and a girl, Aurora, Prinie, and Angle. Janice had give babies, Lovly, Goodly, Sam, Jumbo, and Jumbo two. It was no doubt that they were the happyest ladies in the land. Or maybe even the galexy. They were happyer then a elf.
Tuesday, October 13, 2015
Advanced Academics
Yup, it's an Emerald post!
In Pre-k and Kindergarten, as her teachers will attest, Emerald struggled with behavioral problems. To be honest, the issues date back to the parents-day-out program she was in as a toddler as well. Either way, she was 50 pounds of sass in a 5 pound, glitter-encrusted satchel, and she was wreaking havoc wherever she went. Emotional outbursts, ceaseless arguing, over-the-top theatrics...she was exhausting.
Despite many behavioral plans, redirections, rewards and punishments, we were still struggling reigning in her exaggerated responses to every day events.
That's a nice way of saying she was completely nutbags, isn't it?
Don't get me wrong--the other side of it was that she was wildly and wonderfully creative, bright, loving, and funny. She does EVERYTHING with her own special Emerald flair, which is to say to the utter max. When she was good, she was very, very good; and when she was bad...well, you know the rest.
Last year in first grade, we had a bit of better success with her being under the care of the school counselor with a rigid behavioral intervention plan firmly in place, but she was still ending up in In School Suspension a minimum of once a week.
(Story time again! Last year, Emerald proudly said she "only" had a half day's worth of ISS that day, then asked me how old Daddy and I were when we first went to ISS. I pretended to think for a half a moment, then replied quiet honestly, "umm..NEVER!")
At the end of last year, Emerald was tested to see if she was Gifted and Talented (GT). I didn't hold out an excess of hope that she would do spectacularly; though I consider her intelligent, she missed the first day of testing due to illness, and rushed through the rest with little regard.
Toward the end of the summer, we received her results: she had gotten a score of 99% and was accepted into the Advanced Academics program.
We weren't really sure until the first Advanced Academics parents' meeting tonight what that actually entailed, what that looked like. Which bothers me just a touch, as it is eight weeks into the school year. Better late than never, so I won't complain.
I will try and relay as best I can what I learned tonight, though I am not certain how well exactly I will do.
The program is a way to give GT kids more challenging material while learning alongside their peers, without giving them extra work or projects they have to do at home.
The way the director explained it, a child that is given more and more work to keep them busy because they are finishing too quickly simply learns to take go painstakingly slowly so that they don't have to do extra. Basically, they get burned out by being bogged down. In Advanced Academics, they have the same amount of work as their classmates, but it is scaled to be more challenging for them.
In the past, the GT kids were separated into their own classroom, as they do with many special ed kids. Now, they have a system in place called the cluster classroom. They take a group of four to five GT students and put them in a class where the rest are general education, but the teacher is certified to teach the Advanced Academics. (I really want to abbreviate it so I don't have to type it out every time, but it just doesn't look right for me to put AA.) I am not really clear on the benefit of doing it this way over the other, but I also can't see a direct pitfall to it either, so I am not worrying about it excessively right now.
Within the program, they have certain tools that evaluate the child's specific abilities within each subject and that offers them adapted material at their level. For example, for mathematics they use a computer program called Reasoning Minds; for leadership and organizational skills, they use Leader in Me. Which is actually campus-wide, so I am not certain how that works either. It is based on the 7 Habits of Highly Effective People, a book I was just not interested enough in to plow through. Maybe that's why I am not following all this brainy curriculum--not focused enough :-p
The kids also participate in activities such as Accelerated Reading, where you can earn points by reading books and taking quizzes that test your comprehension; the points can then be used for special treats at the end of the six weeks. For her classroom, if you meet your goal you get to watch the movie with the others that met their goals; second tier is popcorn, third a drink, fourth candy, fifth a pillow, sixth a blanket, and seventh a stuffed animal, all of which you can get with the movie. Emerald's allowed to skip the candy step as she isn't allowed the candy because of her diabetes.
Another activity she can choose to participate in is UIL. For her grade, she can compete in Storytelling, Creative Writing, or Chess. She really wanted to do chess, but you have to be a member of the chess club first and she missed the deadline to sign up. From my prompting, she signed up for Creative Writing, where you get five pictures and you have to write a story using any combination of them. To get her into the habit and practice, she has started keeping a daily writing journal at home where she can write anything from poetry, songs, journal entries, prayers, or stories. This has really helped with her atrocious handwriting and spelling, plus putting her thoughts down clearly.
Those in Advanced Academics this year will work together a few times. One, they are trying to get the campus to be a part of 30 Million Words, which is where the whole school tries to reach a combined total of reading 30 million words. The GT kids will direct and film commercials that will be played for the rest of the students recommending different books, reviewing books, and generally encouraging and advertising reading. The other is a fundraiser the Advanced Academics will organize and oversee to raise money for a charity, most likely Unicef. The final is a field trip to the State Park as a group.
For Emerald's grade, the Texas Performance Standards Project for the first semester is Animal Nation; for second semester it is Who's Who: A Study of Biography.
We also received information regarding Threshold Camp which is hosted at Hardin Simmons every summer for gifted and talented students.
They encouraged us to sign up with the Texas Association for the Gifted and Talented (TAGT) which provides programs, seminars, resources, and support groups when you become a member.
All in all, it really seems to be helping her. Michael went to her Parent-Teacher conference last week to discuss how she was doing, and to get the results of some further testing we had them do for her. Her teacher reports that Emerald will occasionally have emotional outbursts but will often calm herself down fairly quickly; she has yet to get in any trouble this year so far. All of her marks are high, with Math and Reading being her two strongest areas; handwriting is her weakest. Her reading assessment suggested she was reading at a fifth grade level at a 98% comprehension level, which means that she needs to be reading harder books than we have been providing for her. So I got her started in on the "Chronicles of Narnia" series and "Harry Potter". She's all ready read and loved "Anne of Green Gables", so I also got her "The Secret Garden" and "Little Women". I don't want to turn her away from reading all together by pushing it too hard, so I'm trying to be chill about it. Which of course I'm not. But I am trying.
So that is where we are right now. We are keeping an eye on her. She is really very happy in her class with her friends; her main areas of interest are Science (she keeps talking about scientists that she has met, the science experiments she performs, research and observations and predictions. She wants to be a geologist when she grows up) and Math. Given the choice, she wants to read nonfiction as much as possible, but she is happy reading the "Minecraft Manual" eight thousand more times.
We'll see. I am very proud of my girl though :-)
--Andie
In Pre-k and Kindergarten, as her teachers will attest, Emerald struggled with behavioral problems. To be honest, the issues date back to the parents-day-out program she was in as a toddler as well. Either way, she was 50 pounds of sass in a 5 pound, glitter-encrusted satchel, and she was wreaking havoc wherever she went. Emotional outbursts, ceaseless arguing, over-the-top theatrics...she was exhausting.
Despite many behavioral plans, redirections, rewards and punishments, we were still struggling reigning in her exaggerated responses to every day events.
That's a nice way of saying she was completely nutbags, isn't it?
Don't get me wrong--the other side of it was that she was wildly and wonderfully creative, bright, loving, and funny. She does EVERYTHING with her own special Emerald flair, which is to say to the utter max. When she was good, she was very, very good; and when she was bad...well, you know the rest.
Last year in first grade, we had a bit of better success with her being under the care of the school counselor with a rigid behavioral intervention plan firmly in place, but she was still ending up in In School Suspension a minimum of once a week.
(Story time again! Last year, Emerald proudly said she "only" had a half day's worth of ISS that day, then asked me how old Daddy and I were when we first went to ISS. I pretended to think for a half a moment, then replied quiet honestly, "umm..NEVER!")
At the end of last year, Emerald was tested to see if she was Gifted and Talented (GT). I didn't hold out an excess of hope that she would do spectacularly; though I consider her intelligent, she missed the first day of testing due to illness, and rushed through the rest with little regard.
Toward the end of the summer, we received her results: she had gotten a score of 99% and was accepted into the Advanced Academics program.
We weren't really sure until the first Advanced Academics parents' meeting tonight what that actually entailed, what that looked like. Which bothers me just a touch, as it is eight weeks into the school year. Better late than never, so I won't complain.
I will try and relay as best I can what I learned tonight, though I am not certain how well exactly I will do.
The program is a way to give GT kids more challenging material while learning alongside their peers, without giving them extra work or projects they have to do at home.
The way the director explained it, a child that is given more and more work to keep them busy because they are finishing too quickly simply learns to take go painstakingly slowly so that they don't have to do extra. Basically, they get burned out by being bogged down. In Advanced Academics, they have the same amount of work as their classmates, but it is scaled to be more challenging for them.
In the past, the GT kids were separated into their own classroom, as they do with many special ed kids. Now, they have a system in place called the cluster classroom. They take a group of four to five GT students and put them in a class where the rest are general education, but the teacher is certified to teach the Advanced Academics. (I really want to abbreviate it so I don't have to type it out every time, but it just doesn't look right for me to put AA.) I am not really clear on the benefit of doing it this way over the other, but I also can't see a direct pitfall to it either, so I am not worrying about it excessively right now.
Within the program, they have certain tools that evaluate the child's specific abilities within each subject and that offers them adapted material at their level. For example, for mathematics they use a computer program called Reasoning Minds; for leadership and organizational skills, they use Leader in Me. Which is actually campus-wide, so I am not certain how that works either. It is based on the 7 Habits of Highly Effective People, a book I was just not interested enough in to plow through. Maybe that's why I am not following all this brainy curriculum--not focused enough :-p
The kids also participate in activities such as Accelerated Reading, where you can earn points by reading books and taking quizzes that test your comprehension; the points can then be used for special treats at the end of the six weeks. For her classroom, if you meet your goal you get to watch the movie with the others that met their goals; second tier is popcorn, third a drink, fourth candy, fifth a pillow, sixth a blanket, and seventh a stuffed animal, all of which you can get with the movie. Emerald's allowed to skip the candy step as she isn't allowed the candy because of her diabetes.
Another activity she can choose to participate in is UIL. For her grade, she can compete in Storytelling, Creative Writing, or Chess. She really wanted to do chess, but you have to be a member of the chess club first and she missed the deadline to sign up. From my prompting, she signed up for Creative Writing, where you get five pictures and you have to write a story using any combination of them. To get her into the habit and practice, she has started keeping a daily writing journal at home where she can write anything from poetry, songs, journal entries, prayers, or stories. This has really helped with her atrocious handwriting and spelling, plus putting her thoughts down clearly.
Those in Advanced Academics this year will work together a few times. One, they are trying to get the campus to be a part of 30 Million Words, which is where the whole school tries to reach a combined total of reading 30 million words. The GT kids will direct and film commercials that will be played for the rest of the students recommending different books, reviewing books, and generally encouraging and advertising reading. The other is a fundraiser the Advanced Academics will organize and oversee to raise money for a charity, most likely Unicef. The final is a field trip to the State Park as a group.
For Emerald's grade, the Texas Performance Standards Project for the first semester is Animal Nation; for second semester it is Who's Who: A Study of Biography.
We also received information regarding Threshold Camp which is hosted at Hardin Simmons every summer for gifted and talented students.
They encouraged us to sign up with the Texas Association for the Gifted and Talented (TAGT) which provides programs, seminars, resources, and support groups when you become a member.
All in all, it really seems to be helping her. Michael went to her Parent-Teacher conference last week to discuss how she was doing, and to get the results of some further testing we had them do for her. Her teacher reports that Emerald will occasionally have emotional outbursts but will often calm herself down fairly quickly; she has yet to get in any trouble this year so far. All of her marks are high, with Math and Reading being her two strongest areas; handwriting is her weakest. Her reading assessment suggested she was reading at a fifth grade level at a 98% comprehension level, which means that she needs to be reading harder books than we have been providing for her. So I got her started in on the "Chronicles of Narnia" series and "Harry Potter". She's all ready read and loved "Anne of Green Gables", so I also got her "The Secret Garden" and "Little Women". I don't want to turn her away from reading all together by pushing it too hard, so I'm trying to be chill about it. Which of course I'm not. But I am trying.
So that is where we are right now. We are keeping an eye on her. She is really very happy in her class with her friends; her main areas of interest are Science (she keeps talking about scientists that she has met, the science experiments she performs, research and observations and predictions. She wants to be a geologist when she grows up) and Math. Given the choice, she wants to read nonfiction as much as possible, but she is happy reading the "Minecraft Manual" eight thousand more times.
We'll see. I am very proud of my girl though :-)
--Andie
Friday, September 25, 2015
Commonly Asked Questions
I talked yesterday about not being afraid to ask parents with autistic children questions; today, as the man of the hour is actually home "sick" and watching Veggie Tales next to me on the couch, I am going to answer some of the most common I hear.
"What is autism?"
This one is getting asked less often as the condition is becoming more...I hesitate to say it, but well--popular. It has become somewhat the disorder de jour. I am going to cover it first anyway to dispel
misconceptions and set a basis for the rest of the questions.
So, autism is something called a developmental disorder that is characterized by impairment to social function, sensory interpretation, and communication skills.
Basically it means that while still in the womb, Gabriel's little fetus brain developed differently than the norm. Look at it kind of like the difference between a Windows operating system versus a Mac OS. He, the Mac, is still fully functioning and in fact may do certain things better under the right circumstances. For the long-term Windows user (you), it takes a bit of a learning curve to figure out how the Mac works.
Autism is not a disease--Gabe is not sick, he is just different.
"How old was your child when he was diagnosed?"
Easy one--though in retrospect, Gabriel was autistic even as an infant, the discrepancy became more pronounced the older that he got. Around 17 months we started the process of trying to discover exactly what was different; at 30 months (two and a half years) he was diagnosed. Six months later, we got it reconfirmed with another diagnosis.
"How did you know he was autistic?"
Most people that ask this have the underlying fear--"How do I know if MY child has autism?"
Obviously most of the parents you are going to speak to if you have growing concerns are not going to be doctors or diagnosticians. We cannot tell you whether or not your child is on the spectrum; you would have to talk to your pediatrician about that. Others are just curious. Either way, it doesn't bother me to answer.
One of the biggest first indicators is failing the M-CHAT.
The M-CHAT is the Modified Checklist for Autism in Toddlers and it feels like it is being given more in pediatrician offices. I also have not had an infant in three years, so it may have changed since then, I don't know. It is a questionnaire that might indicate whether you should seek further testing. It does not alone determine whether or not a child is on the spectrum.
With Gabriel, he started having what his daycare referred to as "staring spells"--he would stare off into space, unresponsive to outside stimuli. His teacher would try rubbing his back, snapping in front of his face, calling his name, and many other ways to get his attention, but he would show no sign of awareness or acknowledgment. Words that he learned would be used for a brief period of time, a month at the longest, and then would disappear never to be used again. Walking, he could not get more than a few steps before falling down.
As this blog followed on that journey, I won't recount it all here, but the next year was filled with visit from Early Childhood Intervention specialists and therapists, and visits to a neurologist, allergist, ENT, psychiatrist, audiologist, and finally a developmental pediatrician. Through a barrage of tests all the conclusions were the same: Gabriel had Autism Spectrum Disorder, moderate to severe.
"What determines severity?"
Though there is probably a significant amount of consideration that goes into determining severity of the disorder, Gabe's was actually pretty easy--he is non-communicative, which automatically puts him on the severe end of the spectrum.
"Are you sure it is not Asperger's?"
Yup.
There was a more defined separation between the five (yes, five!) "flavors" of autism, but there was a great deal of confusion still lingering so they did away with the division in the new diagnostic criteria.
Asperger's IS autism.
The determination between Asperger's and autism is that Asperger's does not present with a significant speech delay.
Individuals with Asperger's will still experience any mix of the characteristics of autism, including (but not limited to): limited interests, repetitive behavior, ritualistic behavior/strict schedulers, or difficulty with social skills.
Gabriel has a significant speech delay (he is completely nonverbal), so he does not have Asperger's.
"But he is so....!!"
Normally, I hear (even from licensed medical professionals), "But he's so affectionate!!!"
It is true--I have been blessed with one of the most loving little critters to have ever walked this green earth. Gabriel loves kisses and cuddles, and Lord knows the boy has never met a stranger.
Story time: One day I was at the grocery store with the boys clipped into one of those large carts with the plastic seats in front. I was price comparing when I hear a squeal behind me; Gabriel had wrapped his arm around some pretty little twenty-something and pulled her into his lap. (The whole aisle laughed and applauded, and the young lady was very understanding while Gabe suggestively laughed.)
I can't deny that he is made out of snuggles and hugs. He also makes pretty solid eye contact, eats a wide and healthy variety in his diet, and has never lined up a single toy in his life.
We get it into our head this image of autism--we are visual thinkers and our brains offer up any associated topic when tagged, from the neighbor's autistic son to "Rain Man". That image doesn't allow much room for the reality that autism is a spectrum disorder. You can have as little or as much as you have and still fall under the umbrella, as long as you meet pieces of each criterion of diagnosis:
Social impairment, communication difficulties, and repetitive behavior.
By that reasoning, Gabriel who cannot regulate his emotions or interact with peers appropriately, cannot express his needs in a way to get them met, and watches the same ten seconds of Veggie Tales over and over and over again for all of his existence...Gabriel is autistic.
"My child wanted to....and he's not autistic."
It feels like a fine distinction, I know it does. Your little girl wants to watch "Frozen" four times a day every day for a year; your son will only eat fish sticks and mac and cheese. What makes that normal child behavior and Gabriel's not.
As I said before, it does roll into more than just the one category--in this case, your child is demonstrating repetitive behavior or limited interest, but they are speaking just fine and they have a gaggle of giggling friends at church and school.
You kind of have to hit the trifecta in order to fit in the ASD realm. I don't want to dismiss your struggle or frustration--heck, I have on more than one occasion thought about whizzing that iPad out the window if I had to hear "Jingle Bells" played one. more. freaking. time. I can sympathize with you!!
Humanity is a bit of a spectrum disorder; idiosyncrasies or eccentricities don't make you autistic. It just makes you..."you" :)
"How are you doing?"
I'm good; how YOU doin'? ;)
Ah, I'm just kiddin'. The reason I included this question is because people honestly want to know how we are coping. I mean this whole thing is painted like a total horror show.
On the one hand...yeah, it kinda feels that way some days.
We all know the divorce rates for autistic parents (80%) and there is the study suggesting that parents of autistic children experience stress levels comparable to that of combat veterans. It is HARD, man. It is actively dreading the full moon or cold fronts blowing in, a never-ending barrage of therapists and doctors visits, a pharmacy's worth of medicine that cause frankly terrifying side effects, and situations you couldn't have even dreamed you would be dealing with. Nights where you get little to no sleep that last for months or years at a time. Heartbreak as you watch your child wanting to be included and belong, and just not being able to say anything. The nugget of fear that he has reached his peak, and that this...it isn't going to get any better.
Then you look at him.
His cheeks that still have that delicious baby chubbiness and his Mowgli shaggy hair-do (he isn't going to let you cut it, after all). You see him run into class and give his teacher a big hug around her neck and see him put his hand on a friend's shoulder. Hear him call his OT "baby", which makes her laugh and spin him around. Watch him rewind his show so he can hear "God made you special. And he loves you very much." again and again as he falls asleep.
Guys, I gotta tell you--Gabriel is amazing. He is so smart that if he brings you a tablet that has low battery, he'll bring you the right charger, too. If I am upset, he is sensitive enough to wait until I slow down to give me the tightest, strongest hug. And his patience! Benjamin will antagonize his brother from the moment he gets up until he goes to bed at night, and time after time, Gabe just kisses Ben's hand or on his head and walks away.
I love Gabe, just the way he is. He is just awesome for any person, autistic or not. I dare anyone else to meet him and not to love him, too--there hasn't been a single person yet that hasn't liked him, even at his worst.
So, how am I doing?
I'm doing really, really great. Thank you for asking :)
--Andie
"What is autism?"
This one is getting asked less often as the condition is becoming more...I hesitate to say it, but well--popular. It has become somewhat the disorder de jour. I am going to cover it first anyway to dispel
misconceptions and set a basis for the rest of the questions.
So, autism is something called a developmental disorder that is characterized by impairment to social function, sensory interpretation, and communication skills.
Basically it means that while still in the womb, Gabriel's little fetus brain developed differently than the norm. Look at it kind of like the difference between a Windows operating system versus a Mac OS. He, the Mac, is still fully functioning and in fact may do certain things better under the right circumstances. For the long-term Windows user (you), it takes a bit of a learning curve to figure out how the Mac works.
Autism is not a disease--Gabe is not sick, he is just different.
"How old was your child when he was diagnosed?"
Easy one--though in retrospect, Gabriel was autistic even as an infant, the discrepancy became more pronounced the older that he got. Around 17 months we started the process of trying to discover exactly what was different; at 30 months (two and a half years) he was diagnosed. Six months later, we got it reconfirmed with another diagnosis.
"How did you know he was autistic?"
Most people that ask this have the underlying fear--"How do I know if MY child has autism?"
Obviously most of the parents you are going to speak to if you have growing concerns are not going to be doctors or diagnosticians. We cannot tell you whether or not your child is on the spectrum; you would have to talk to your pediatrician about that. Others are just curious. Either way, it doesn't bother me to answer.
One of the biggest first indicators is failing the M-CHAT.
The M-CHAT is the Modified Checklist for Autism in Toddlers and it feels like it is being given more in pediatrician offices. I also have not had an infant in three years, so it may have changed since then, I don't know. It is a questionnaire that might indicate whether you should seek further testing. It does not alone determine whether or not a child is on the spectrum.
With Gabriel, he started having what his daycare referred to as "staring spells"--he would stare off into space, unresponsive to outside stimuli. His teacher would try rubbing his back, snapping in front of his face, calling his name, and many other ways to get his attention, but he would show no sign of awareness or acknowledgment. Words that he learned would be used for a brief period of time, a month at the longest, and then would disappear never to be used again. Walking, he could not get more than a few steps before falling down.
As this blog followed on that journey, I won't recount it all here, but the next year was filled with visit from Early Childhood Intervention specialists and therapists, and visits to a neurologist, allergist, ENT, psychiatrist, audiologist, and finally a developmental pediatrician. Through a barrage of tests all the conclusions were the same: Gabriel had Autism Spectrum Disorder, moderate to severe.
"What determines severity?"
Though there is probably a significant amount of consideration that goes into determining severity of the disorder, Gabe's was actually pretty easy--he is non-communicative, which automatically puts him on the severe end of the spectrum.
"Are you sure it is not Asperger's?"
Yup.
There was a more defined separation between the five (yes, five!) "flavors" of autism, but there was a great deal of confusion still lingering so they did away with the division in the new diagnostic criteria.
Asperger's IS autism.
The determination between Asperger's and autism is that Asperger's does not present with a significant speech delay.
Individuals with Asperger's will still experience any mix of the characteristics of autism, including (but not limited to): limited interests, repetitive behavior, ritualistic behavior/strict schedulers, or difficulty with social skills.
Gabriel has a significant speech delay (he is completely nonverbal), so he does not have Asperger's.
"But he is so....!!"
Normally, I hear (even from licensed medical professionals), "But he's so affectionate!!!"
It is true--I have been blessed with one of the most loving little critters to have ever walked this green earth. Gabriel loves kisses and cuddles, and Lord knows the boy has never met a stranger.
Story time: One day I was at the grocery store with the boys clipped into one of those large carts with the plastic seats in front. I was price comparing when I hear a squeal behind me; Gabriel had wrapped his arm around some pretty little twenty-something and pulled her into his lap. (The whole aisle laughed and applauded, and the young lady was very understanding while Gabe suggestively laughed.)
I can't deny that he is made out of snuggles and hugs. He also makes pretty solid eye contact, eats a wide and healthy variety in his diet, and has never lined up a single toy in his life.
We get it into our head this image of autism--we are visual thinkers and our brains offer up any associated topic when tagged, from the neighbor's autistic son to "Rain Man". That image doesn't allow much room for the reality that autism is a spectrum disorder. You can have as little or as much as you have and still fall under the umbrella, as long as you meet pieces of each criterion of diagnosis:
Social impairment, communication difficulties, and repetitive behavior.
By that reasoning, Gabriel who cannot regulate his emotions or interact with peers appropriately, cannot express his needs in a way to get them met, and watches the same ten seconds of Veggie Tales over and over and over again for all of his existence...Gabriel is autistic.
"My child wanted to....and he's not autistic."
It feels like a fine distinction, I know it does. Your little girl wants to watch "Frozen" four times a day every day for a year; your son will only eat fish sticks and mac and cheese. What makes that normal child behavior and Gabriel's not.
As I said before, it does roll into more than just the one category--in this case, your child is demonstrating repetitive behavior or limited interest, but they are speaking just fine and they have a gaggle of giggling friends at church and school.
You kind of have to hit the trifecta in order to fit in the ASD realm. I don't want to dismiss your struggle or frustration--heck, I have on more than one occasion thought about whizzing that iPad out the window if I had to hear "Jingle Bells" played one. more. freaking. time. I can sympathize with you!!
Humanity is a bit of a spectrum disorder; idiosyncrasies or eccentricities don't make you autistic. It just makes you..."you" :)
"How are you doing?"
I'm good; how YOU doin'? ;)
Ah, I'm just kiddin'. The reason I included this question is because people honestly want to know how we are coping. I mean this whole thing is painted like a total horror show.
On the one hand...yeah, it kinda feels that way some days.
We all know the divorce rates for autistic parents (80%) and there is the study suggesting that parents of autistic children experience stress levels comparable to that of combat veterans. It is HARD, man. It is actively dreading the full moon or cold fronts blowing in, a never-ending barrage of therapists and doctors visits, a pharmacy's worth of medicine that cause frankly terrifying side effects, and situations you couldn't have even dreamed you would be dealing with. Nights where you get little to no sleep that last for months or years at a time. Heartbreak as you watch your child wanting to be included and belong, and just not being able to say anything. The nugget of fear that he has reached his peak, and that this...it isn't going to get any better.
Then you look at him.
His cheeks that still have that delicious baby chubbiness and his Mowgli shaggy hair-do (he isn't going to let you cut it, after all). You see him run into class and give his teacher a big hug around her neck and see him put his hand on a friend's shoulder. Hear him call his OT "baby", which makes her laugh and spin him around. Watch him rewind his show so he can hear "God made you special. And he loves you very much." again and again as he falls asleep.
Guys, I gotta tell you--Gabriel is amazing. He is so smart that if he brings you a tablet that has low battery, he'll bring you the right charger, too. If I am upset, he is sensitive enough to wait until I slow down to give me the tightest, strongest hug. And his patience! Benjamin will antagonize his brother from the moment he gets up until he goes to bed at night, and time after time, Gabe just kisses Ben's hand or on his head and walks away.
I love Gabe, just the way he is. He is just awesome for any person, autistic or not. I dare anyone else to meet him and not to love him, too--there hasn't been a single person yet that hasn't liked him, even at his worst.
So, how am I doing?
I'm doing really, really great. Thank you for asking :)
--Andie
Thursday, September 24, 2015
Abnormal Life
My dear, sweet cousin was asking questions last night about what autism looks like from a very clinical standpoint--how severity of condition is determined, what autistic adults are like, how I feel about having an autistic son, things of that nature.
I can obviously not speak for every parent that has a special needs child, but for the most part (unless you catch them on a very bad day):
We are happy to answer questions.
I'm not sure if they are afraid of prying or being insensitive, if they will appear foolish for not knowing, or that it might be inappropriate, but for whatever reason, people in general are interested but nervous that they are going to offend us.
It is okay to be curious!
Someone along the way, society as a whole were encouraged to not ask questions. Better to stay silent and all that.
But for me personally, and for almost all the other parents that I have encountered, go ahead and ask. It is not only okay, it is kind of touching--you care enough to learn more. You are thinking. We want people asking questions because the more that know about my child, the less excuses I have to make to those ignorant few, the less apologies I have to make for behavior that requires no apology, and certainly no shame on my part.
I do feel shame, however. The longer I go, the more callous I become to the judgment of strangers. If singing Billy Joel's "The Longest Time" quite loudly at Walmart keeps Gabriel focused on me instead of how horrible the whole grocery shopping experience is (don't worry, buddy--I am right there with you), then that is what I am going to do. Most people understand, and nuts to the ones that don't.
It is hard sometimes, though. Specifically, I feel so ashamed when my vigilance lapsed for a second and something unpleasant or unsafe happened that I knew I could have prevented. If only I hadn't been...catching up with a friend, paying attention to another child, drinking my coffee, trying to do... really anything else.
That's the sting there, isn't it? Having an autistic child is never looking away.
It's like when your baby is just starting to toddle around--the world is full of dangers you are painfully aware of and even a moment of inattentiveness, and they are jamming toys into electrical outlets and swallowing coins and conceiving a hundred different ways to cause themselves bodily harm in the name of exploration. A kid on the spectrum, you sorta feel like they never grow out of that phase.
Don't get me wrong: I am not looking for sympathy. Often, I think people expect...maybe that I am disappointed with my son not being "normal".
(Aside here: in the world of ASD, we don't use the term "normal" because it implies that my child is not, in fact, normal. The appropriate term is "neurotypical" because it specifically conveys the distinction--my son's brain developed structurally and functionally in a way that is different than most children's do.)
I am not sad. Does not offend me--you can ask. No, I am not sad. We all have our struggles, and this is what Gabriel's look like. I like Gabriel. I think he's neat.
Would it make my life easier if he was not autistic?
That is a hard question. For one thing...not actually sure myself. I had three c-sections and have never gone into labor, so I can't tell you much about natural delivery. It is the same principle. About my life and my struggles, I can tell you a great deal; but I don't know what it looks like from individual perspectives, in other families.
Personally, I do not think it is easier to have neurotypical children, or harder to have autistic children. Difficulty is determined by personal thresholds--what you can handle, what you cannot, what makes you sad/mad/frustrated/stressed/miserable. There are parents out there with a severe aversion to fecal matter. God help me if I had that problem because raising kids is like 90% other people's crap.
That is my personal view point though. Please don't go up to a mother with a special needs child with the impression that she is not struggling. I guarantee you that she is struggling. Take my words to mean: you don't know how people are coping, so don't bring any preconceived notions. Don't judge her...but you don't need to pity her either.
The next post, I will actually answer some of the most common questions I get so that if you are still feeling some apprehension over speaking up, you can get some answers.
If you have any thing you have specifically been wondering, reply and I will include that next time.
Until then!
I can obviously not speak for every parent that has a special needs child, but for the most part (unless you catch them on a very bad day):
We are happy to answer questions.
I'm not sure if they are afraid of prying or being insensitive, if they will appear foolish for not knowing, or that it might be inappropriate, but for whatever reason, people in general are interested but nervous that they are going to offend us.
It is okay to be curious!
Someone along the way, society as a whole were encouraged to not ask questions. Better to stay silent and all that.
But for me personally, and for almost all the other parents that I have encountered, go ahead and ask. It is not only okay, it is kind of touching--you care enough to learn more. You are thinking. We want people asking questions because the more that know about my child, the less excuses I have to make to those ignorant few, the less apologies I have to make for behavior that requires no apology, and certainly no shame on my part.
I do feel shame, however. The longer I go, the more callous I become to the judgment of strangers. If singing Billy Joel's "The Longest Time" quite loudly at Walmart keeps Gabriel focused on me instead of how horrible the whole grocery shopping experience is (don't worry, buddy--I am right there with you), then that is what I am going to do. Most people understand, and nuts to the ones that don't.
It is hard sometimes, though. Specifically, I feel so ashamed when my vigilance lapsed for a second and something unpleasant or unsafe happened that I knew I could have prevented. If only I hadn't been...catching up with a friend, paying attention to another child, drinking my coffee, trying to do... really anything else.
That's the sting there, isn't it? Having an autistic child is never looking away.
It's like when your baby is just starting to toddle around--the world is full of dangers you are painfully aware of and even a moment of inattentiveness, and they are jamming toys into electrical outlets and swallowing coins and conceiving a hundred different ways to cause themselves bodily harm in the name of exploration. A kid on the spectrum, you sorta feel like they never grow out of that phase.
Don't get me wrong: I am not looking for sympathy. Often, I think people expect...maybe that I am disappointed with my son not being "normal".
(Aside here: in the world of ASD, we don't use the term "normal" because it implies that my child is not, in fact, normal. The appropriate term is "neurotypical" because it specifically conveys the distinction--my son's brain developed structurally and functionally in a way that is different than most children's do.)
I am not sad. Does not offend me--you can ask. No, I am not sad. We all have our struggles, and this is what Gabriel's look like. I like Gabriel. I think he's neat.
Would it make my life easier if he was not autistic?
That is a hard question. For one thing...not actually sure myself. I had three c-sections and have never gone into labor, so I can't tell you much about natural delivery. It is the same principle. About my life and my struggles, I can tell you a great deal; but I don't know what it looks like from individual perspectives, in other families.
Personally, I do not think it is easier to have neurotypical children, or harder to have autistic children. Difficulty is determined by personal thresholds--what you can handle, what you cannot, what makes you sad/mad/frustrated/stressed/miserable. There are parents out there with a severe aversion to fecal matter. God help me if I had that problem because raising kids is like 90% other people's crap.
That is my personal view point though. Please don't go up to a mother with a special needs child with the impression that she is not struggling. I guarantee you that she is struggling. Take my words to mean: you don't know how people are coping, so don't bring any preconceived notions. Don't judge her...but you don't need to pity her either.
The next post, I will actually answer some of the most common questions I get so that if you are still feeling some apprehension over speaking up, you can get some answers.
If you have any thing you have specifically been wondering, reply and I will include that next time.
Until then!
Tuesday, March 24, 2015
Adapt Class
Endeavoring to make the best possible decision for Gabriel's placement, Michael and I decided to visit the Adapt classroom.
What we saw was better than I could have imagined, an all-around encouraging experience.
This is the list of questions (and her answers) that I asked of the teacher while I was there.
* What is the student-to-teacher ratio? How large is the class generally?
-The class is eight students to four adults--three aides and one teacher. There are also therapists coming in and out all day long as well. That puts the s-2-t ratio right at about 2-3 students per adult, most of the time.
*What is the integration rate into the PALs class or general education?
-The goal is not for the students to become career adapts, but to progress enough to be integrated back into mainstream.
*What is the age range/grade range of the students in the class?
-Kindergarten through second grade, which is 5 to around 8. The adapt class next door to them is third through fifth.
*How is aggression handled?
-Aggression is mostly addressed through redirection (moving the child away from the undesired behavior to a preferred activity) or through calming with sensory activities. If the aggression is behavioral instead of communicative or sensory, the parents and teacher can discuss a more punitive reaction, such as a brief time-out.
*Does the class participate in specials?
-They go to Art and music and PE, just like all the other students. They take it in shifts, however--two aides will take four of the kids to the special, while the teacher and the other aide stay in the class with the other four. Then the groups switch.
*Where do the students get interactive time with neurotypically developing peers?
-The students share "specials" together with the gen-ed peers, such as music, PE, and art, as well as eating in the cafeteria together. They also have fifth grade "buddies" that come and play with them.
*What experience do you have with autism?
-She told me about her years of working in special education and the different training she has had; there are other AU kids in her class.
*What is the primary communication method for students?
-There are picture schedules and pecs books set up everywhere, as well as several types of communication devices. There is group speech therapy as well as individual speech every week.
*How do you communicate with the parent?
-She sends home a journal every day with what the child did, how his/her day went, what they are working on and what they are doing well. If there is a problem that needs to be addressed or the student is struggling, she will call or email. If the child is injured, she will call and let the parent know.
*What motivation strategies are used?
-They have "I am working for" charts, where there is a picture of the child and a picture of what they want--special treat, jumping on the trampoline, playing with a balloon, whatever. Each time the student participates in an activity or displays positive behavior, they put it on the chart. Once they reach five positive behaviors, they get their reward.
*How is independence fostered?
-Students have some unstructured free time in which they are able to choose their activity from several centers, including many, many sensory centers. There is also a sensory lab right off the room where there is a fiberoptic waterfall and blacklight and all sorts of amazing gidgety-gadgety stuff.
Gabriel would have to get through several sets of locked doors and out of a chain link fence to escape from his class. The teacher is incredibly nice and patient; most of her answers were asking about Gabriel and what would make us happier and more comfortable with him being there. She's obviously has experience with special needs. The classroom is large and spacious, and the entire atmosphere is laid back and relaxed, soothing. All the students seemed at ease and confident, well-cared for and well-loved. The classroom has its own bathroom.
Really, it was a lovely experience. Everyone was so nice and seemed to enjoy their jobs and enjoy the students, gentle, quiet people in a gentle, quiet environment.
There is still a lot to consider and discuss, but a transition to a different campus and a different class is not sounding like a completely unrealistic possibility.
-Andie
Tuesday, March 10, 2015
Gabriel's ARD
I lost my complacency Wednesday.
It happens so subtly that you scarcely notice it happens. Over time, the unacceptable starts to become the norm; in the pursuit of picking your battles, your leniency catches up with you.
Gabriel's school situation has left me disquiet since the beginning. Switching from the idyllic environment of Preston Smith to the uncharted waters of AISD was jarring. Everyone was new and unknown, and my inexperience was apparent.
Let me lead with: my goal is and always has been getting what is best for Gabriel. I believe that is (or at the very least, should be) the primary motivation for everyone in the ARDs.
For the sake of tedium for the uninitiated, this post will be peppered with explanations. I have said it before and I am sure I will say it again: Autism is a disorder of acronyms.
Gabriel is still testing within the perimeters for a diagnosis of Autism Spectrum Disorder (ASD). He is on the severe end of the spectrum, as he is (as of this time) completely nonverbal and without a consistent form of communication.
ARD stands for Admission, Review, and Dismissal, and they happen entirely too often and hardly often enough at one a year (in normal operating circumstances).
ARD stands for Admission, Review, and Dismissal, and they happen entirely too often and hardly often enough at one a year (in normal operating circumstances).
An ARD is a battle...errr, I mean "meeting" to discuss placement for Gabriel within the school, the goals that a team of specialists and his parents agree upon, modifications and accommodations to help Gabe achieve those goals, things of that nature.
At the beginning of the academic year, we transferred not only from a different school into a different program, but into an entirely new school district. This made the ARD that we had in August particularly tricky, as it was a combination transfer-ARD and transition-ARD, which sounds redundant, but basically means transferring from Lubbock to Abilene, and transitioning from Preschool Program for Children with Disabilities (PPCD) into the elementary school Peer Assisted Leadership (PALs) program.
My biggest point of contention in August was that, geographically speaking, there could not be a further elementary school from our house that they could have placed him in and still be considered in the district. This town is petite to begin with, and the school system picked the only campus that would be considered a hardship for us. When confronted with the question as to why my son was placed so very far from home, there was no satisfactory answer.
The school has a whole team of people for ARDs. There is the diagnostician, an LSSP (which stands for Licensed Specialist in School Psychology), a special education teacher, a general education teacher, an administrator (which could be a disabilities coordinator, a principal, what have you), and any number of specialists that will be working with your child. Gabriel usually gets a speech therapist to address his communication delays, a physical therapist for any gross motor delays, and an occupational therapist for his sensory needs and fine motor.
All of this brings us to Wednesday.
Wednesday was Gabriel's annual ARD as well as his three-year evaluation, which would reassess his current abilities and determine where he falls in diagnostic criteria. We had a lot of ground to cover, a lot of information to go over, but we scarcely made it a half an hour in before I called the meeting to an abrupt close, gathered what dignity I could muster, and walked quickly out to my car where I burst into furious and horrified tears.
I had brought along Michael and Jarrod with me, a perfect trio of the three stages of navigating ARDs, Michael being completely new to them, Jarrod being well seasoned (he had six to attend that day alone), and me understanding just enough to know but not to fight.
What caused my hasty retreat??
They said those two little words that made my world fall apart:
Intellectually Disabled.
I had been aware that the teacher was recommending a change of placement for the next academic school year, from the PALs class to what is called the ADAPT class. ADAPT is the Adaptive Behaviors class, a baffling, misleading name if I have ever heard one. It is a class with a more restrictive environment, a smaller student-to-teacher ratio, and a curriculum more geared toward life skills and sensory integration and less toward education.
The proposed diagnosis of ID--intellectual disability--felt completely like an ambush.
According the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (known as the DSM-5), an Intellectual Disability presents with deficits in intellectual functioning (such as reasoning, problem solving, abstract thinking, judgment) as measured by IQ tests.
Here I am going to stop and note: Gabriel is unable to comply with IQ tests at this time because of his lack of communication and his inability to attend to a task; in other words, his autism. Any IQ test they would administer at his current functional level would have to be a questionnaire given to his teacher.
ID also has a component of impairment in adaptive functioning, namely social skills, communication, school functioning, and personal independence at home or in the community.
Little note from the author again! Impairment in adaptive functioning sounds awfully familiar, does it not? Oh, that's right! It's just a big fancy explanation for AUTISM!!
Which means that as far as I can tell, the difference between a a diagnosis of Autism and ID is an IQ test that my son is unable to perform.
The real kicker though? Here is a quote from the DSM-5:
-- Intellectual disability (intellectual developmental disorder) as a DSM-5 diagnostic term replaces “mental retardation” used in previous editions of the manuals. --
So, I am sitting in this room, facing the modern day firing squad of experts...and they are trying to convince me that I need to agree to let them call my son MR.
It felt like some sick joke where nobody was laughing. How could they look at Gabriel--my Gabriel, who has elicited praise from every specialist that has worked with him to date on his obvious intelligence--and mention ID with a straight face?
With what justification could they possibly be suggesting this?
I did not stick around to find out. I requested copies of all the paperwork that would be covered at the meeting for private review, and I got the hell out of Dodge.
My first instinct was, of course, outrage. They were obviously trying to pawn off a difficult child! How dare they!
And oh, how I wanted it to just be their fault. Rationality eventually overcame my emotional reflex reaction, and I started to build my well of knowledge from those that know more than I do.
I contacted several more seasoned ARD dwellers, who gave me much information to chew over, helping me understand the role I need to play for Gabriel and our legal rights. I will explain what I have learned in more detail over coming posts, if I can manage to keep writing--this whole debacle has been taking up a considerable amount of time and brainpower.
The biggest problem we have is that we were completely blindsided by this. We had not received progress reports throughout the school year; there was little indication there was a problem with where Gabriel stood on progressing toward his goals. Granted, he had been sent home from school...a considerable amount. Enough that it was frustrating us, but not enough to suggest a major upheaval like this. And for seemingly unrelated matters. The only reason we knew about the ADAPT thing was because the teacher sent us an email the day before the ARD informing us of her recommendation.
All of this information, including the hefty pack of papers I got in the mail from the ARD committee, has led me to the idea:
The functional Gabriel at school is considerably less developed than the functional Gabriel we see here at home.
Now, the duality of Autism appears to be a well-accepted commonality. An autistic child will likely perform better at school or at home than he or she does at the other. In this case, Gabe does better at home. That is not entirely surprising: home is quieter, has less peers, less noise, less distractions. It is dark and cool and his learning here is more one-on-one and low-stress.
Within the paperwork, I discovered that Gabriel's main priority at school is sensory-seeking. The notes they make about his development are incongruous with what we see here--they notice less signing, no consonants in his vocalization, higher disregard for his name being called, and gross motor delay.
The comments they made lend understanding to their conclusion of ID.
Not that it makes it acceptable, or correct. I still believe in my heart it is 100% wrong. It's just not true. I will reevaluate every time his FIE (Full and Individual Evaluation) comes around until he is capable of answering the question once and for all with a IQ test, but as of right now, my main concern is actually figuring out what environmental circumstances are leading to this discrepancy in performance.
We have an inkling that he cannot be moved to the ADAPT class, which is populated by a different level of functioning than Gabriel exhibits (specifically, the medically fragile and wheelchair-bound), without adding ID to his paperwork.
And we might be completely wrong on that front. In which case, we are happy to consider an alternative placement. Honestly, the teacher for the ADAPT class has a great reputation among her peers and the classroom is made to sound ideal for Gabriel.
Which means that as far as I can tell, the difference between a a diagnosis of Autism and ID is an IQ test that my son is unable to perform.
The real kicker though? Here is a quote from the DSM-5:
-- Intellectual disability (intellectual developmental disorder) as a DSM-5 diagnostic term replaces “mental retardation” used in previous editions of the manuals. --
So, I am sitting in this room, facing the modern day firing squad of experts...and they are trying to convince me that I need to agree to let them call my son MR.
It felt like some sick joke where nobody was laughing. How could they look at Gabriel--my Gabriel, who has elicited praise from every specialist that has worked with him to date on his obvious intelligence--and mention ID with a straight face?
With what justification could they possibly be suggesting this?
I did not stick around to find out. I requested copies of all the paperwork that would be covered at the meeting for private review, and I got the hell out of Dodge.
My first instinct was, of course, outrage. They were obviously trying to pawn off a difficult child! How dare they!
And oh, how I wanted it to just be their fault. Rationality eventually overcame my emotional reflex reaction, and I started to build my well of knowledge from those that know more than I do.
I contacted several more seasoned ARD dwellers, who gave me much information to chew over, helping me understand the role I need to play for Gabriel and our legal rights. I will explain what I have learned in more detail over coming posts, if I can manage to keep writing--this whole debacle has been taking up a considerable amount of time and brainpower.
The biggest problem we have is that we were completely blindsided by this. We had not received progress reports throughout the school year; there was little indication there was a problem with where Gabriel stood on progressing toward his goals. Granted, he had been sent home from school...a considerable amount. Enough that it was frustrating us, but not enough to suggest a major upheaval like this. And for seemingly unrelated matters. The only reason we knew about the ADAPT thing was because the teacher sent us an email the day before the ARD informing us of her recommendation.
All of this information, including the hefty pack of papers I got in the mail from the ARD committee, has led me to the idea:
The functional Gabriel at school is considerably less developed than the functional Gabriel we see here at home.
Now, the duality of Autism appears to be a well-accepted commonality. An autistic child will likely perform better at school or at home than he or she does at the other. In this case, Gabe does better at home. That is not entirely surprising: home is quieter, has less peers, less noise, less distractions. It is dark and cool and his learning here is more one-on-one and low-stress.
Within the paperwork, I discovered that Gabriel's main priority at school is sensory-seeking. The notes they make about his development are incongruous with what we see here--they notice less signing, no consonants in his vocalization, higher disregard for his name being called, and gross motor delay.
The comments they made lend understanding to their conclusion of ID.
Not that it makes it acceptable, or correct. I still believe in my heart it is 100% wrong. It's just not true. I will reevaluate every time his FIE (Full and Individual Evaluation) comes around until he is capable of answering the question once and for all with a IQ test, but as of right now, my main concern is actually figuring out what environmental circumstances are leading to this discrepancy in performance.
We have an inkling that he cannot be moved to the ADAPT class, which is populated by a different level of functioning than Gabriel exhibits (specifically, the medically fragile and wheelchair-bound), without adding ID to his paperwork.
And we might be completely wrong on that front. In which case, we are happy to consider an alternative placement. Honestly, the teacher for the ADAPT class has a great reputation among her peers and the classroom is made to sound ideal for Gabriel.
Embracing the transition has its own weighty considerations though, too. Gabriel has a legal right to being placed in his Least Restrictive Environment (LRE), and this classroom will be much more restrictive. There is will also be the concession that we will have to make regarding his personal Individual Education Plan (IEP), sacrificing educational goals in favor of life skills. I have to remember that a lot of these, Gabe has mastered at home. The class would be more or less be teaching him these skills in different circumstances. It feels redundant.
There is also the very real possibility that this is putting him in an environment to learn undesirable behavior while he operates with unlike peers under a lower goal ceiling.
A wonderful, wonderful woman gave the this question to ask unceasingly during these proceedings:
How does this make my son independent, employable, and ready for college?
Because those are our goals. That's why we are all here; preparing Gabriel for independence, higher education, and eventual career.
The recent study that states some
90% of adults with autism are unemployable is very real. My concerns are not short-term; I can't afford for them to be.
So, I am suiting up to fight. There is so, so much more to it than I put here. Even I am exhausted from reading this, so I need to curb it. There will be more on all of this later, in future posts. I just offered this up as an amuse bouche of things yet to come.
Remember Gabriel during your prayers--his army is assembling, and we need all the help we can get :-)
--Andie
Monday, January 26, 2015
I Will Praise
When it all falls,
Crashing down,
Shattering,
Breaking me,
My will.
When it's gone--
All gone...
Then, will I praise.
When it is impossible,
Improbable,
Achingly painful
To take one more step.
When I cannot move,
Think,
Breathe
Without falling apart,
Heart breaking,
Aching--
Then, will I praise.
Remind me then
Of who I am,
Who you are.
Remind me why I am here,
Every day,
Still here.
Be with me
When I'm raging,
Angry,
Hostile,
Hateful,
When I'm impossible to love--
Then, will I praise.
Then will I praise you.
In all things,
In all times,
When I most want
And when I can't.
Can't? Won't.
Then,
Always,
Forever,
With all of my being,
Then, will I praise you.
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