One of the goals we had in putting in a swimming pool this past winter was that the kids would have a year-round 24/7 way to reconnect themselves to reality. Water - especially warm water - really does it for them. Every day this week, they have spent at least an hour in the pool after school letting go of the stresses of the day, reconnecting with each other, and exercising.
Today they are having races in the hot tub. Literally. They are racing each other across the diameter of the spa. It has to be a whole eight feet across. Each race is a tie, but they don't care. They both declare themselves the winner and go for it again. And again. And again.
In addition to racing (it could be pod racing, I'm not sure), they are reciting dialog from Star Wars. Ian is Darth Vader, Ainsley plays all the other roles. They know their lines perfectly, including the accents. Ian's Vader sounds a lot like his C3PO, but I'd rather hear the weak accent than have to experience the odor emitted from his arm after he wears the black plastic Darth Vader glove for any length of time. I believe the best way to describe it would be smashed rotten peas, slimy gray carrots mixed with the peas, creamed spinach, and sweat. Although I was not privy to the actual original scent, this description of the smell emanating from my cousin David's cast upon its removal is probably the most accurate comparison I can make. (David used his cast as a depository for anything he didn't wish to eat. He was around five years-old when he broke his leg and at the height of his vegetable hating years.) I think Ian has finally realized that the glove stinks, so he doesn't wear it much any more.
It is doubtful if I will ever be able to step more than five feet away from the hot tub with the kids in it, even when they are teens. No matter how many times I tell them, they always find a new creative way to break the rules that I very plainly explain each time they enter the hot water. The initial guideline of keeping heads above water at all times was to keep hair or swimsuit strings from becoming caught in the drain at the bottom of the hot tub. Each day there is a new reason not to allow total submersion. Less than five minutes ago I had to explain why propelling oneself backward from the steps across the hot tub and dunking under water is a bad idea. Ainsley missed scraping the back of her head down the flagstone ledge by about an inch.
"But MO-om! I'll be careful," Ainsley wailed.
"Arguing will get you a 10 minute time-out from the pool," I said with one eyebrow raised.
"Oh-kay," she sighed.
I don't want to be one of those moms who explains the hazards of play in emergency room terms, because Ainsley will want to check out the ER if she thinks there is a lot of cool stuff there. Ian can be scared straight; but not my daughter. Of course, she isn't the one who stuck a bead in her ear last summer, almost requiring surgery to remove it. That was my boy genius.
It's hard to tell them to stop doing the things that help to calm them down. Everything seems to be a double-edge sword. Maybe I need to dress them in armor. Does anyone know how to make cast iron float?
Wednesday, March 26, 2008
Tuesday, March 25, 2008
Drugs
Steve had an interesting and all-too-familiar conversation with a co-worker today. The gentleman and he were discussing their sons and attention difficulties. The guy said his teenage son was having trouble paying attention and he suspected ADHD might be a factor. When Steve said his son has the same problem, the colleague said, "But you don't have him on medication," to which Steve replied, "Oh, yes we do."
It is ironic that four years after Ian's diagnosis, the advice a friend gave to him is the same advice he now gives to other fathers who are beginning their journey into the autism spectrum.
If a single pill - or several - could give us back the son we had 7 years ago, we'd do it in a heartbeat. With drugs such as Ritalin, Concerta, and Adderall, we have been able to give Ian - and Ainsley - the ability to focus, to complete important tasks, to learn with less frustration and anxiety. Things make sense, and there is less "noise" in the brain when the right meds are given. Ainsley told me last week that she feels less nervous when she takes her methylin. That alone makes it worthwhile; but I can see the confidence my kids have when the drugs kick in. It's a beautiful thing.
Let me just say to any parent who thinks that putting off medicating your ADHD child is doing him/her a favor - WHAT THE HELL ARE YOU THINKING???
If your child had cancer, would you wait and see if he outgrew it? If your daughter breaks her leg playing soccer, are you going to hope it heals on its own? C'mon. ADHD is a neurological disorder for which there is excellent drug therapy. Kids with ADHD don't learn how to focus just because you tell them to. They don't "shape up" because their parents and teachers get tough with them. They don't outgrow it. With the help of medication and some educational strategies, your child can become successful at many of the behaviors that have been elusive. Without it, you are sentencing your child to a lifetime of failure.
The stigma of ADHD and having your child on drugs for it is in your own mind. GET OVER IT!
With that being said, let me confess that I was once in the same boat with the same mindset. A very wise developmental pediatrician helped me to realize that we had nothing to lose and everything to gain for our children.
And now, my currently sleepy children whose medication has left their bodies for the day, need some assistance getting ready for bed. Good night, dear friends. Good luck.
It is ironic that four years after Ian's diagnosis, the advice a friend gave to him is the same advice he now gives to other fathers who are beginning their journey into the autism spectrum.
If a single pill - or several - could give us back the son we had 7 years ago, we'd do it in a heartbeat. With drugs such as Ritalin, Concerta, and Adderall, we have been able to give Ian - and Ainsley - the ability to focus, to complete important tasks, to learn with less frustration and anxiety. Things make sense, and there is less "noise" in the brain when the right meds are given. Ainsley told me last week that she feels less nervous when she takes her methylin. That alone makes it worthwhile; but I can see the confidence my kids have when the drugs kick in. It's a beautiful thing.
Let me just say to any parent who thinks that putting off medicating your ADHD child is doing him/her a favor - WHAT THE HELL ARE YOU THINKING???
If your child had cancer, would you wait and see if he outgrew it? If your daughter breaks her leg playing soccer, are you going to hope it heals on its own? C'mon. ADHD is a neurological disorder for which there is excellent drug therapy. Kids with ADHD don't learn how to focus just because you tell them to. They don't "shape up" because their parents and teachers get tough with them. They don't outgrow it. With the help of medication and some educational strategies, your child can become successful at many of the behaviors that have been elusive. Without it, you are sentencing your child to a lifetime of failure.
The stigma of ADHD and having your child on drugs for it is in your own mind. GET OVER IT!
With that being said, let me confess that I was once in the same boat with the same mindset. A very wise developmental pediatrician helped me to realize that we had nothing to lose and everything to gain for our children.
And now, my currently sleepy children whose medication has left their bodies for the day, need some assistance getting ready for bed. Good night, dear friends. Good luck.
Thursday, March 13, 2008
Finding Our Way Through the Quick Sand
I am losing my mind . . . again. Every time I think I have found it, the darn thing gets loose and runs away.
There isn't one particular event associated with my latest sense of exasperation. It's a colorful array of spring time madness that has sprouted pretty much every place I go, and I am the busy bee who must visit each pollen-infested bud.
I don't know where to begin. At the present moment, police and news helicopters are circling the square mile just southwest of my home. They have been whirling around up there for at least a couple of hours because of a teenager who has holed himself up inside the family home, apparently because he's pissed off at his parents. It is believed he is armed.
This situation and events of last month are proof enough to me that there should not and will never be any guns in my home.
Ian has become extremely angry. He doesn't want to follow rules, unless he makes them. He thinks Steve and I are mean and we make up rules just to frustrate him. Countless times he has stated vehemently that he wishes Steve, Ainsley, and I would move to Mars so he and Sugar could do whatever they want to do. The dog is the only one who truly loves and understands him.
It is true that we have instituted some new policies in our home over the last few weeks, and they have been difficult for all of us. In the long run, however, I believe we will all benefit. The one that bugs the kids the most is the "One hour of screen time per day" rule. That means one hour divided among t.v., computer games, and Nintendo. They get to choose how to spend their hour, but once it's over, it's over. Ian thinks this is terribly unfair because it takes him just under an hour to complete a chapter on his Star Wars video game. Then he immediately wants to start another one and doesn't want to quit the game after starting the next one. We have had to pull him away from the computer, kicking and screaming, on so many occasions we took the game away until further notice.
Ian is allowed 30 to 45 minutes to unwind after school. Then he is provided a nutritious snack and must begin his homework by 4:00. The kicker this week has been the warm swimming pool in the back yard. I won't let him swim until the homework is finished each day, and that is very unfair. Requiring him to do homework at all is such a tremendous injustice. He feels like he is in jail. On some days, I do too.
He has become more picky about what he eats, unless it is candy. He was doing really well for a while, willing to try some new things every once in a while. Now he's back to the same thing for breakfast, the same thing for lunch, and the only thing he ever wants for dinner is chicken nuggets. He only gets those once a week.
Ainsley has good days and bad. She is still having difficulty with potty training. I have rinsed so many pairs of poopy undies, the smell is stuck in my nose. Gag! She does fairly well when the methylin is still in her system. That is a fleeting six to seven hours each day, which leaves plenty of time for accidents.
Ainsley's situation can probably be remedied with a little more time and possibly another ml of medicine; but there is no rush. Ian's situation, however, requires intense study and a quick solution. He can be so fragile at times, explosive at others. I don't want the police and news helicopters hovering over my house any time soon. In fact, never would be o.k. with me.
I have decided the best way to gain control of this situation is to do two things. The first, take him off the medication that seems to be providing no benefit. The second, find a new psychiatrist who can manage the medications and provide therapy that is appropriate for a child with his conditions and consistent with they way we are raising him. I have found the person I believe can handle this challenge. My hope is that Ian will trust him to help.
O. K., so I'm not losing my mind after all. The quicksand that has been pulling me down with all of these behavior issues seems a little less sticky than it did last week. There is a rope within reach. I just need to s t r e t c h a l i t t l e f a r t h e r .
There isn't one particular event associated with my latest sense of exasperation. It's a colorful array of spring time madness that has sprouted pretty much every place I go, and I am the busy bee who must visit each pollen-infested bud.
I don't know where to begin. At the present moment, police and news helicopters are circling the square mile just southwest of my home. They have been whirling around up there for at least a couple of hours because of a teenager who has holed himself up inside the family home, apparently because he's pissed off at his parents. It is believed he is armed.
This situation and events of last month are proof enough to me that there should not and will never be any guns in my home.
Ian has become extremely angry. He doesn't want to follow rules, unless he makes them. He thinks Steve and I are mean and we make up rules just to frustrate him. Countless times he has stated vehemently that he wishes Steve, Ainsley, and I would move to Mars so he and Sugar could do whatever they want to do. The dog is the only one who truly loves and understands him.
It is true that we have instituted some new policies in our home over the last few weeks, and they have been difficult for all of us. In the long run, however, I believe we will all benefit. The one that bugs the kids the most is the "One hour of screen time per day" rule. That means one hour divided among t.v., computer games, and Nintendo. They get to choose how to spend their hour, but once it's over, it's over. Ian thinks this is terribly unfair because it takes him just under an hour to complete a chapter on his Star Wars video game. Then he immediately wants to start another one and doesn't want to quit the game after starting the next one. We have had to pull him away from the computer, kicking and screaming, on so many occasions we took the game away until further notice.
Ian is allowed 30 to 45 minutes to unwind after school. Then he is provided a nutritious snack and must begin his homework by 4:00. The kicker this week has been the warm swimming pool in the back yard. I won't let him swim until the homework is finished each day, and that is very unfair. Requiring him to do homework at all is such a tremendous injustice. He feels like he is in jail. On some days, I do too.
He has become more picky about what he eats, unless it is candy. He was doing really well for a while, willing to try some new things every once in a while. Now he's back to the same thing for breakfast, the same thing for lunch, and the only thing he ever wants for dinner is chicken nuggets. He only gets those once a week.
Ainsley has good days and bad. She is still having difficulty with potty training. I have rinsed so many pairs of poopy undies, the smell is stuck in my nose. Gag! She does fairly well when the methylin is still in her system. That is a fleeting six to seven hours each day, which leaves plenty of time for accidents.
Ainsley's situation can probably be remedied with a little more time and possibly another ml of medicine; but there is no rush. Ian's situation, however, requires intense study and a quick solution. He can be so fragile at times, explosive at others. I don't want the police and news helicopters hovering over my house any time soon. In fact, never would be o.k. with me.
I have decided the best way to gain control of this situation is to do two things. The first, take him off the medication that seems to be providing no benefit. The second, find a new psychiatrist who can manage the medications and provide therapy that is appropriate for a child with his conditions and consistent with they way we are raising him. I have found the person I believe can handle this challenge. My hope is that Ian will trust him to help.
O. K., so I'm not losing my mind after all. The quicksand that has been pulling me down with all of these behavior issues seems a little less sticky than it did last week. There is a rope within reach. I just need to s t r e t c h a l i t t l e f a r t h e r .
Thursday, March 06, 2008
The Report
The last two weeks have been really rough for Ian. . .and for me. He was given an assignment to do outside of school, and that just didn't sit right with him. Although he was allowed to choose the person about whom he would write, there were some restrictions. For example, the person had to be real and must have made a significant social contribution. In addition to the one-page written or typed report, each student was to draw a picture of their subject and dress as the person for their presentation.
Ian chose Ben Franklin because he was a cool inventor. He selected his subject a few days after being given the assignment. Each day after school I tried to get him to sit with me at the computer and research old Ben on the internet. He would scream, cry, and beg me not to make him do that. He felt overworked and abused by being asked to complete an extra assignment. As a result, he has been refusing to do his regular homework too. It is as if he has gone one strike.
Maybe it was a mistake for us to tell him about Gandhi. His was one of the suggested biographies, and Steve and I went to great lengths to tell him about Gandhi's life and his philosophy of civil disobedience. We also thought Ian would look adorable in costume as Gandhi. We weren't certain he understood what we were saying, but as the last two weeks have shown, Ian DOES understand the act of protest and is willing to use it in order to get his way.
My parents visited last weekend, and we thought for sure Ian would respond to Grandpa's interest in the project. We were wrong. All Ian wanted to do was play Star Wars on the computer. It became a serious battle. In the end, the game disk was confiscated and the computer turned off. Finally, on Sunday morning, Grandma was able to sit with Ian and read an article from the internet with him. Together they learned about Franklin's early life, which seemed to flip the switch of interest half-way for Ian. He didn't seem to mind hearing about Ben, but he was not going to write the report.
When I was about to email Ian's teacher and tell her things were not going well, my wonderful friend, Karin, called. She had a great idea for getting Ian to do the report. She and her husband came over and got him on the topic of school and the report. She told Ian for every fact he could tell her about Ben Franklin, her husband would tell him a joke. I recorded the whole scene on my phone so we could type it using Ian's own words later. It went really well. When they were finished, Karin and Doug gave the kids a really cool new pool toy as a reward.
Karin reminded me that Ian is supposed to have accommodations on assignments like this. I completely forgot! How could I forget something so important about Ian's IEP??? When Ian gets this upset over an assignment, we're supposed to modify it so he can be successful. If we'd been smart, we would have approached it differently and given him a list of things he could include in the report and have him pick some of them. It's second grade for crying out loud, not a grad school midterm.
On Monday afternoon, Ian and I sat down at the computer to type the report. Having him tell me all the cool things he had learned about Ben Franklin made it very easy to put the report together. It was such a relief for him when it was finished, he said very happily, "That wasn't so bad after all!"
By then, Ian and I had discussed the whole costume issue. It became clear that Ian was not comfortable with this portion of the assignment. Although we came up with suggestions from his own wardrobe, he just didn't think he could do it. Rather than push him into a severe attack of anxiety again, I decided on my own that that the costume was going to have to be our major modification. It was a sensory issue. Ian needed the comfort of wearing his own clothes the way he was used to wearing them, which he did.
Tuesday morning, Ainsley and I arrived at school at 9:45, just in time to hear the presentations begin. Ainsley was so excited to be in Ian's classroom. She wanted to sit next to him. Fortunately, she was easily persuaded to join me in her own seat next to me at the back of the room. She was quiet and sat still through all of the reports, which was not possible prior to beginning Methylin.
Ian stood at the front of the room and proudly read his report to his classmates. He did a wonderful job. One of the other moms even commented on how well he reads. During the last friend's report, Ian sneaked over to stand beside me. I put my arm around him and whispered in his ear, "You did awesome, dude! I am so proud of you!"
He leaned forward, gave me a kiss, and whispered back, "Thank you for encouraging me."
Sunday, March 02, 2008
Empathy
As I was preparing lunch today, Ainsley seemed off in her own world. I would ask her to help with something simple, and she would move in the right direction then forget what her task was almost as soon as she took three steps. She even forgot to eat the macaroni and cheese she had insisted on making without my help.
Then Ian wanted a hot dog to go with his mac-n-cheese. After being asked seven times if she wanted one too, Ainsley finally mumbled something that sounded like a "yes".
"Ainsley, will you get the ketchup, please?" I requested. She just continued walking around the kitchen and mumbling to herself.
"Ainsley. . .the ketchup is in the refrigerator. Will you get it, please?" I asked again. She looked up at me with an odd expression, then began tugging at her shirt. I just rolled my eyes and hoped she would comply. Eventually, she had most of her arm inside the shirt with her upper arm and elbow sticking through the sleeve.
"I want to have one arm," she said plainly. And then it hit me, like an arrow through my heart.
One of Ainsley's friends from ballet class has only one arm. She is a beautiful child, full of smiles and giggles, just like all the other girls. Ainsley adores her. I think she is amazed at how much her friend does for herself, and that she does everything so well.
Ainsley and I have talked about what it must be like for the girl, and how it is important that Ainsley treat her the same as anyone else. She is not "the girl with one arm". She is "a friend from ballet class named Stephanie*".
Ainsley had decided it was time to walk in her friend's shoes.
She opened the refrigerator door with her right hand and stood inside looking for the ketchup. The enormous 64oz. bottle was on the bottom shelf of the door. Thank goodness for plastic containers! She reached down with her small right hand and found out quickly that retrieving ketchup is a two-handed job. Immediately, she did as she has seen her friend do: she reached down with her elbow and used her make-shift stub to assist. She rose, holding the bottle close to her body and scooted around the fridge door to close it with her back side.
Although proud of herself for pulling off what seemed like a huge task, she realized after a couple of steps that carrying the bottle across the room this way was going to be difficult. I gave her a hand as we walked to the table together.
"So, you wanted to see what it's like to be Stephanie*?" I asked. She just looked up at me for a moment. "It isn't easy doing things that way, is it?" She shook her head. "I am proud of you for trying, sweetie. That was a nice thing to do."
Nothing else was said. She had discovered what she needed to know about her friend. Everyone has unique challenges, and we all cope with them the best we can.
*not her real name
Then Ian wanted a hot dog to go with his mac-n-cheese. After being asked seven times if she wanted one too, Ainsley finally mumbled something that sounded like a "yes".
"Ainsley, will you get the ketchup, please?" I requested. She just continued walking around the kitchen and mumbling to herself.
"Ainsley. . .the ketchup is in the refrigerator. Will you get it, please?" I asked again. She looked up at me with an odd expression, then began tugging at her shirt. I just rolled my eyes and hoped she would comply. Eventually, she had most of her arm inside the shirt with her upper arm and elbow sticking through the sleeve.
"I want to have one arm," she said plainly. And then it hit me, like an arrow through my heart.
One of Ainsley's friends from ballet class has only one arm. She is a beautiful child, full of smiles and giggles, just like all the other girls. Ainsley adores her. I think she is amazed at how much her friend does for herself, and that she does everything so well.
Ainsley and I have talked about what it must be like for the girl, and how it is important that Ainsley treat her the same as anyone else. She is not "the girl with one arm". She is "a friend from ballet class named Stephanie*".
Ainsley had decided it was time to walk in her friend's shoes.
She opened the refrigerator door with her right hand and stood inside looking for the ketchup. The enormous 64oz. bottle was on the bottom shelf of the door. Thank goodness for plastic containers! She reached down with her small right hand and found out quickly that retrieving ketchup is a two-handed job. Immediately, she did as she has seen her friend do: she reached down with her elbow and used her make-shift stub to assist. She rose, holding the bottle close to her body and scooted around the fridge door to close it with her back side.
Although proud of herself for pulling off what seemed like a huge task, she realized after a couple of steps that carrying the bottle across the room this way was going to be difficult. I gave her a hand as we walked to the table together.
"So, you wanted to see what it's like to be Stephanie*?" I asked. She just looked up at me for a moment. "It isn't easy doing things that way, is it?" She shook her head. "I am proud of you for trying, sweetie. That was a nice thing to do."
Nothing else was said. She had discovered what she needed to know about her friend. Everyone has unique challenges, and we all cope with them the best we can.
*not her real name
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