Tonight as our family gathered at the dinner table, Steve and I looked at Ian sitting quietly in his chair. A tender, sad face stared at the plate before him as a tear rolled slowly down his cheek. We asked what was wrong, and each of us reached out and held one of his hands.
"I was thinking about what it would be like if [my teacher] died," he sobbed quietly. Death has been on his mind a lot lately. He is working through it, trying to understand what it means to die. Lately, it bothers him terribly to think of losing the people he cares about.
This teacher has reached a part of Ian that no other educator has. He has loved all of his teachers, but this one is special. She gets it. She gets him. He feels accepted by her. And he doesn't want to lose her.
He had a substitute the other day, and I think that might be where this started. Regardless, he is starting to understand that things happen to other people, not just to him. And when things happen, many people are affected. He is starting to get the big picture. He is beginning to see who he is in relation to those around him. It is an awesome, scary, wonderful feeling.
My blog has long been my own explanation or interpretation of autism and how it affects our family. Sometimes, my kids' faces can explain things better than lengthy prose. This video is a first attempt for Ian and Ainsley to speak for themselves about Asperger's Syndrome, with a little help from Josh Groban.
Monday, October 27, 2008
Tuesday, October 21, 2008
It's a Sisterhood
Watch this video. It gave me chills to know there is another mom out there who experiences the same things with her children that I do with mine ... and she feels the same isolation that I feel when things are at their most challenging.
Click on the title of this post to see her blog on Trusera.
Sunday, October 19, 2008
The Multiple Personalities of Food
Getting Ian to eat dinner is a challenge. He rarely wants to eat what I have fixed, even if he said it sounded good when I asked his opinion half an hour earlier. During the dinner hour, he is usually on the downhill side of consciousness, which doesn't help.
Tonight he was feeling pretty good. He even said so. I was hopeful he would be willing to try a bite of everything on his plate.
When we sat at the table, he zoned out as usual. When I took his fork in hand and attempted to test him to see if he was done, he grabbed the utensil from me and said, "Don't even think about it!"
"So, you CAN hear us," Steve said. "That's good. Now eat."
Ian looked at his plate, examining the peas, potatoes, and steak closely. Then, before our very eyes, the food started talking. It carried on a lengthy conversation about which one Ian should eat first, each extolling its own virtues and nutrient content. The talking got louder and more determined until it reached an all-out argument.
Finally, Ian said, "Enough! Shut up, you guys! All of you are very nutritious and are good for me. I think I'll eat the peas first since they are softest on my teeth."
Steve and I looked at each other in disbelief as Ian ate spoonful after loaded spoonful of peas. Then he moved on to his potatoes smothered in ketchup - the double whammy of veggies. Gone in just a minute.
All that remained was the steak. Ian stared at it. "I know the steak has iron and is good for me," he stated, then waited for just a few seconds longer before digging in. The boy who not long ago claimed the President told him he must be a vegetarian, ate every beefy bite of his perfectly cooked sirloin.
This child who has not had an appetite for months, cleaned his plate and then said, "Can I have dessert?"
"What does your tummy say," I asked.
He looked down at his belly and concluded, "It says there is a little more room for dessert." Boy and talking food groups were delighted to welcome a popcycle into the mix. It went down without a fight.
Tonight he was feeling pretty good. He even said so. I was hopeful he would be willing to try a bite of everything on his plate.
When we sat at the table, he zoned out as usual. When I took his fork in hand and attempted to test him to see if he was done, he grabbed the utensil from me and said, "Don't even think about it!"
"So, you CAN hear us," Steve said. "That's good. Now eat."
Ian looked at his plate, examining the peas, potatoes, and steak closely. Then, before our very eyes, the food started talking. It carried on a lengthy conversation about which one Ian should eat first, each extolling its own virtues and nutrient content. The talking got louder and more determined until it reached an all-out argument.
Finally, Ian said, "Enough! Shut up, you guys! All of you are very nutritious and are good for me. I think I'll eat the peas first since they are softest on my teeth."
Steve and I looked at each other in disbelief as Ian ate spoonful after loaded spoonful of peas. Then he moved on to his potatoes smothered in ketchup - the double whammy of veggies. Gone in just a minute.
All that remained was the steak. Ian stared at it. "I know the steak has iron and is good for me," he stated, then waited for just a few seconds longer before digging in. The boy who not long ago claimed the President told him he must be a vegetarian, ate every beefy bite of his perfectly cooked sirloin.
This child who has not had an appetite for months, cleaned his plate and then said, "Can I have dessert?"
"What does your tummy say," I asked.
He looked down at his belly and concluded, "It says there is a little more room for dessert." Boy and talking food groups were delighted to welcome a popcycle into the mix. It went down without a fight.
Friday, October 17, 2008
Why Do They Have to be so Honest?
Today was pumpkin patch day. The entire family got in the van and drove to our favorite place to buy our fall festive gourds - Ainsley's former pre-school.
Ian and Ainsley were so excited to pick out a little one for their own and a large one for carving.
Ian found an enormous pumpkin sitting off to the side of the patch.
"Look, Mom .... this pumpkin is as wide as you are!" he said in amazement.
For the record, neither the pumpkin nor I are as big as his tone would have you believe. But this is a 9 year-old who doesn't understand that being completely honest isn't always a good idea. Nevertheless, I believe I'll hit the gym first thing in the morning.
Ian and Ainsley were so excited to pick out a little one for their own and a large one for carving.
Ian found an enormous pumpkin sitting off to the side of the patch.
"Look, Mom .... this pumpkin is as wide as you are!" he said in amazement.
For the record, neither the pumpkin nor I are as big as his tone would have you believe. But this is a 9 year-old who doesn't understand that being completely honest isn't always a good idea. Nevertheless, I believe I'll hit the gym first thing in the morning.
Monday, October 13, 2008
Friday, October 10, 2008
Doing Girl Stuff with Dad
Steve and Ainsley left after school to go out into the wilderness with their fellow Adventure Princesses. Ainsley is Princess Dandelion, and Steve is Hopping Monkey, or something like that. They waited until the last minute to decide their names, and I can't recall exactly what Steve went with. Whatever it was, it suits him.
Ainsley didn't begin to get excited about this trip until a couple of days ago. In fact, she said adamantly that she was not going. She thought the other girls would laugh at her. About what, she couldn't say, but she didn't want to be laughed at. She finally came around when I bought her a pink camo sleeping bag. Then she got her camp out t-shirt with a matching one for her dad. That really made things gel for her.
Finally, Ainsley and I spent considerable time yesterday making special beaded necklaces for her to trade with the other tribes that will be on the camp out. At first she wanted to make name tags to attach to each of them. I was able to convince her that we couldn't really do that because we didn't know the names of the new friends she would meet there.
Eventually, she settled in to making the necklaces and even made one for the dog, who has been wearing this special adornment ever since it was placed lovingly around her neck.
This girl is such a trip!
Ainsley didn't begin to get excited about this trip until a couple of days ago. In fact, she said adamantly that she was not going. She thought the other girls would laugh at her. About what, she couldn't say, but she didn't want to be laughed at. She finally came around when I bought her a pink camo sleeping bag. Then she got her camp out t-shirt with a matching one for her dad. That really made things gel for her.
Finally, Ainsley and I spent considerable time yesterday making special beaded necklaces for her to trade with the other tribes that will be on the camp out. At first she wanted to make name tags to attach to each of them. I was able to convince her that we couldn't really do that because we didn't know the names of the new friends she would meet there.
Eventually, she settled in to making the necklaces and even made one for the dog, who has been wearing this special adornment ever since it was placed lovingly around her neck.This girl is such a trip!
Extremes
I know my children are capable of keeping their act together to get through the school day. They are experts at this. It is one of the traits of Asperger's that convinces me they should both become actors. The only problem with working so hard to seem like typical kids is they fall apart when they get home from school.
Last week Ainsley was my drama queen, this week Ian has taken the Oscar. His teacher and special ed coordinator both told me he has been doing very well in school. I have seen the evidence in the graded work he has brought home. All scores in the 90s.
With me he complains that he doesn't need to do his homework because he already knows everything. I insist that he must do the assignments anyway before he can have any screen time. This has sent us into horrific arguments with tears shed from everyone in the house (including Ainsley who gets very upset when Ian throws a fit). Several times Ian has threatened to kill himself.
The first time he said it, I ignored it. When he repeated it, I asked why he felt that way.
As he cried in his bed, I snuggled up next to him and wrapped my arms tightly around him. He squeezed back and then relaxed his body. The crying stopped. We talked. He fell asleep.
After these violent frenzies occur, he rarely remembers them or at least is unable to recall why they happened. He was tired, frustrated, angry ... multiple factors wreak havoc on his overworked nervous system.
Today I spoke with Ian's psychiatrist a couple of times. We concluded that perhaps there is some validity to the idea that Ian is bi-polar. In fact, I am pretty sure of it now. We are slowly increasing his dose of Zyprexa until we see his moods level off and his compliance at home improve. And I think I'll have him tested for the gifted program. It can't hurt to provide more challenge for him in areas where he excels.
Today was better. After school he spent more than enough time playing on the computer and was in a wonderful mood. We decided to ride our bikes to his favorite pizza place for dinner. He rode behind me on the tug-a-bug and shouted, "Let's go turbo, Mom!" So we blasted our way through rush-hour traffic to our destination.
That kid sprouted an appetite like Michael Phelps. He ate an entire twelve-inch cheese pizza, a chocolate cannoli, and washed it all down with a Sprite. I had a salad. Ian the Vegetarian does not eat vegetables any more. Don't ask.
We took the long way home through a couple of neighborhoods and to put in some extra time for exercise. He did fantastic, except for all the trick riding he was trying to do behind me. Every few feet the bike would wobble as he extended a leg or tried to ride holding on with only one hand. It's a good thing I couldn't see what he was doing, or I probably would have said something stupid and motherly like, "Don't make me come back there!"
When we got home, we selected a new book to read and went upstairs for his bath. As the tub filled, he sat cross-legged in the water, eyes closed, hands clasped gently as if in a deep meditative state. After a few moments, I whispered,
Last week Ainsley was my drama queen, this week Ian has taken the Oscar. His teacher and special ed coordinator both told me he has been doing very well in school. I have seen the evidence in the graded work he has brought home. All scores in the 90s.
With me he complains that he doesn't need to do his homework because he already knows everything. I insist that he must do the assignments anyway before he can have any screen time. This has sent us into horrific arguments with tears shed from everyone in the house (including Ainsley who gets very upset when Ian throws a fit). Several times Ian has threatened to kill himself.
The first time he said it, I ignored it. When he repeated it, I asked why he felt that way.
"You are ruining my life!" he screamed. "My Nintendo and my computer are my life, and you won't let me have them! I might as well be dead! I have nothing to live for!"How does a kids his age come to this conclusion? My concern mounted when the threats continued for several days. Last night he lashed out violently against Steve, Ainsley, and me just as we were putting the kids to bed. It scared all of us.
As he cried in his bed, I snuggled up next to him and wrapped my arms tightly around him. He squeezed back and then relaxed his body. The crying stopped. We talked. He fell asleep.
After these violent frenzies occur, he rarely remembers them or at least is unable to recall why they happened. He was tired, frustrated, angry ... multiple factors wreak havoc on his overworked nervous system.
Today I spoke with Ian's psychiatrist a couple of times. We concluded that perhaps there is some validity to the idea that Ian is bi-polar. In fact, I am pretty sure of it now. We are slowly increasing his dose of Zyprexa until we see his moods level off and his compliance at home improve. And I think I'll have him tested for the gifted program. It can't hurt to provide more challenge for him in areas where he excels.
Today was better. After school he spent more than enough time playing on the computer and was in a wonderful mood. We decided to ride our bikes to his favorite pizza place for dinner. He rode behind me on the tug-a-bug and shouted, "Let's go turbo, Mom!" So we blasted our way through rush-hour traffic to our destination.
That kid sprouted an appetite like Michael Phelps. He ate an entire twelve-inch cheese pizza, a chocolate cannoli, and washed it all down with a Sprite. I had a salad. Ian the Vegetarian does not eat vegetables any more. Don't ask.
We took the long way home through a couple of neighborhoods and to put in some extra time for exercise. He did fantastic, except for all the trick riding he was trying to do behind me. Every few feet the bike would wobble as he extended a leg or tried to ride holding on with only one hand. It's a good thing I couldn't see what he was doing, or I probably would have said something stupid and motherly like, "Don't make me come back there!"
When we got home, we selected a new book to read and went upstairs for his bath. As the tub filled, he sat cross-legged in the water, eyes closed, hands clasped gently as if in a deep meditative state. After a few moments, I whispered,
"Are you ready to hear the story?"I have to remember this. The Force within him IS good, and he is capable of using it to strengthen his spirit and to find the calm within. A little extra Zyprexa probably helps too, but I sure do like watching him take control and make it happen on his own. This kid inspires me.
"Not yet," he replied quietly, turning his head slightly toward me in acknowledgment.
About twenty seconds later I asked, "What are you doing?"
"Feeling," he replied.
"What are you feeling?" I queried.
"The Force," he whispered.
"What does The Force feel like?" I wondered aloud.
"It feels like everything is great," he explained.
I reached my hand toward his. "You are awesome."
He reached with a wet hand, shook mine, and said, "And you're great too."
"Are you ready now?"
"Not yet," he answered. We paused, he continued to contemplate The Force, and I watched him breathe slowly as his body relaxed. "Now I am ready. The Force is good."
Monday, October 06, 2008
When Answering Questions is Annoying
I have been willing to answer most questions people have asked about my children and their diagnoses, especially when it is another parent who is concerned about his/her own children and autism. Lately, however, I have been drilled repeatedly by one woman in particular who doubts that my children are anywhere on the autism spectrum.
She seems particularly skeptical about Ainsley. I am the first to admit that Ainsley's symptoms of Asperger's are mild and rarely noticeable in public, and her ADHD symptoms are fairly well-controlled with medication. My daughter is fortunate that she has responded so well to the treatments we have selected for her. This does not mean her life is easy. It does mean she is benefiting from our experiences with her older sibling.
It is understandable to want to seek the insights a parent with more experience in this area. I certainly did in the beginning and still do to this day. But for someone new to this game to tell me that my daughter either never had autism or has been cured by what we have done shows not only this woman's ignorance about autism, but also her inability to see beyond the 90 minutes of play time our children have had together.
She has never seen Ainsley at home, unmedicated. She has never seen Ainsley walk around in circles and utter a phrase repeatedly for 10 minutes. She is under the impression it is normal for a child not to speak before her second birthday and that Early Childhood Intervention doesn't know what they are doing. This woman seems to think it is acceptable to tell me she knows more about my children than I do. She is really pissing me off.
So I am sitting here wondering how much longer I am going to allow her to ask questions about my kids and then insult me by telling me I am wrong. We are bound to run into each other again, though hopefully not very soon.
The next time this happens, I plan to respond to each of her questions by asking the same question about her own daughter. No more answers. Just questions. Either she will start thinking about her own child's issues or she'll just get annoyed and leave me alone. I don't want to be mean, but she has just crossed the line one too many times. Hopefully, hearing her own questions asked of her will help her to see how inappropriate her inquiries and conclusions have been.
She seems particularly skeptical about Ainsley. I am the first to admit that Ainsley's symptoms of Asperger's are mild and rarely noticeable in public, and her ADHD symptoms are fairly well-controlled with medication. My daughter is fortunate that she has responded so well to the treatments we have selected for her. This does not mean her life is easy. It does mean she is benefiting from our experiences with her older sibling.
It is understandable to want to seek the insights a parent with more experience in this area. I certainly did in the beginning and still do to this day. But for someone new to this game to tell me that my daughter either never had autism or has been cured by what we have done shows not only this woman's ignorance about autism, but also her inability to see beyond the 90 minutes of play time our children have had together.
She has never seen Ainsley at home, unmedicated. She has never seen Ainsley walk around in circles and utter a phrase repeatedly for 10 minutes. She is under the impression it is normal for a child not to speak before her second birthday and that Early Childhood Intervention doesn't know what they are doing. This woman seems to think it is acceptable to tell me she knows more about my children than I do. She is really pissing me off.
So I am sitting here wondering how much longer I am going to allow her to ask questions about my kids and then insult me by telling me I am wrong. We are bound to run into each other again, though hopefully not very soon.
The next time this happens, I plan to respond to each of her questions by asking the same question about her own daughter. No more answers. Just questions. Either she will start thinking about her own child's issues or she'll just get annoyed and leave me alone. I don't want to be mean, but she has just crossed the line one too many times. Hopefully, hearing her own questions asked of her will help her to see how inappropriate her inquiries and conclusions have been.
Wednesday, October 01, 2008
Kung Fu Darling
Ainsley has wanted to do Kung Fu San Soo since she was two years old. That's when Ian started his study of the oldest martial art. All the other forms of Chinese fighting - Karate, Judo, Jujitsu, Tai Kwan Do, Tai Chi - are spin offs of Kung Fu. Ainsley doesn't understand that yet, but somehow she seems to know that what she is learning is very special.
Her teacher, or Sifu, is a 7th Generation decendent of the originial Chinese Masters. I'm not talking about genetics. This is the training lineage, and it is as sacred to the Kung Fu Masters as family. This means my children and husband are part of the 8th Generation of descendents of the Ching Dynasty, and they are learning from a Master who has earned a 10th Degree Black Belt in this ancient art. To study with him is an honor.
Whether or not Ainsley understands this now is irrelevant. She idolizes Sifu. She knows there is something very special about him and what he has to teach her. He taught her the very reverent salute when she was half the size she is now. She salutes him every time she sees him and then hugs him if she can get away with it.
Getting our family to Kung Fu tonight was a challenge. I won't go into the details of our preparation to leave the house; I'll just say there were several clothing/uniform changes before we made it out the door. Once we arrived at the center, Ainsley and I ran to the bathroom for a last minute emergency. I sent Ian into the classroom and told him to find some seats for us.
In a bathroom filled with children and mothers, Ainsley and I attempted to remedy the last emergency of the evening and get her completely dressed for class. It seemed to take us forever. In a frenzy of hand washing and gathering of sandals, belt, and purse, I looked around to find Ian casually walking into the ladies restroom to find us. Fortunately, no on in the room was exposed, and everyone remained calm.
Ainsley is usually on the cusp of medication effectiveness when class starts. Her noon time dose of Focalin has done just about all it can to keep her zeroed in on the tasks before her. By the end of class she is looking everywhere but the front of the room and walking around in circles. Sifu is very patient and understanding about her inability to watch at that point. Fortunately, she still hears and catches the information she needs to learn.
Tonight the class practiced a new kick that required ample vocal accompaniment. Ainsley loves to make the noises. They are part of the allure of this art. Sometimes she yells "dek" loudly enough that it takes her body of balance. Hopefully, at some point, she will get "right" and "left" sorted out in her mind so she will land solidly on her feet.
Between kicks and shouts, Ainsley likes to blow kisses to me. It is hilarious to watch this precious, beautiful little girl learning how to kick some major butt, yet remaining demure enough to sneak in an air kiss when she has a second.
What makes it even more special is when she has an extra second to pick her nose. That is truly the cherry on top!
At first I was a little worried that my ballerina was going to be giving up her femininity to play a boys game. But now I know she can do it on her own terms and love every minute of it.
Her teacher, or Sifu, is a 7th Generation decendent of the originial Chinese Masters. I'm not talking about genetics. This is the training lineage, and it is as sacred to the Kung Fu Masters as family. This means my children and husband are part of the 8th Generation of descendents of the Ching Dynasty, and they are learning from a Master who has earned a 10th Degree Black Belt in this ancient art. To study with him is an honor.
Whether or not Ainsley understands this now is irrelevant. She idolizes Sifu. She knows there is something very special about him and what he has to teach her. He taught her the very reverent salute when she was half the size she is now. She salutes him every time she sees him and then hugs him if she can get away with it.
Getting our family to Kung Fu tonight was a challenge. I won't go into the details of our preparation to leave the house; I'll just say there were several clothing/uniform changes before we made it out the door. Once we arrived at the center, Ainsley and I ran to the bathroom for a last minute emergency. I sent Ian into the classroom and told him to find some seats for us.
In a bathroom filled with children and mothers, Ainsley and I attempted to remedy the last emergency of the evening and get her completely dressed for class. It seemed to take us forever. In a frenzy of hand washing and gathering of sandals, belt, and purse, I looked around to find Ian casually walking into the ladies restroom to find us. Fortunately, no on in the room was exposed, and everyone remained calm.
Ainsley is usually on the cusp of medication effectiveness when class starts. Her noon time dose of Focalin has done just about all it can to keep her zeroed in on the tasks before her. By the end of class she is looking everywhere but the front of the room and walking around in circles. Sifu is very patient and understanding about her inability to watch at that point. Fortunately, she still hears and catches the information she needs to learn.
Tonight the class practiced a new kick that required ample vocal accompaniment. Ainsley loves to make the noises. They are part of the allure of this art. Sometimes she yells "dek" loudly enough that it takes her body of balance. Hopefully, at some point, she will get "right" and "left" sorted out in her mind so she will land solidly on her feet.
Between kicks and shouts, Ainsley likes to blow kisses to me. It is hilarious to watch this precious, beautiful little girl learning how to kick some major butt, yet remaining demure enough to sneak in an air kiss when she has a second.
What makes it even more special is when she has an extra second to pick her nose. That is truly the cherry on top!
At first I was a little worried that my ballerina was going to be giving up her femininity to play a boys game. But now I know she can do it on her own terms and love every minute of it.
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