Lately I have been asked the same question repeatedly: "How did you know something was wrong with your son?"
Perhaps it is because this blog has made me more willing to discuss candidly our family situation with perfect strangers. Of course, these are usually strangers who are beginning their own journey through the autism maze, and I always feel the need to help them avoid some of the obstacles we encountered. Other times it is asked by friends or acquaintances who wonder how we have survived thus far. Whichever case it may be, I always find this to be a very difficult question to answer.
It is painful to answer because that mother instinct in me knew within the first week of Ian's life that something wasn't right. I could not ascertain exactly what was wrong, nor could I describe it to his pediatrician. It was a terrible feeling in the pit of my stomach that never seemed to go away - more than just new parent jitters. My baby was uncomfortable for some unknown reason, and I couldn't make him better.
The answer is also complex. There were so many signs early on, but we did not realize they were indicators of a problem. Ian had chronic ear infections starting at 10 weeks of age until he was almost 3 years old. We assumed his speech was hard to understand because he could not hear. Surprisingly, that was not the case. His hearing was fine. After he turned 2 and he became withdrawn, we assumed it was because we moved to a new state and he was quietly adjusting to his new surroundings. Yet, I knew such a dramatic personality change was not caused by our move, and it threw up a red flag. His eating habits changed almost over night. He began limiting what he was willing to eat to mostly dairy products, Goldfish, and graham crackers. His tolerance for loud noises, bright lights, and crowds diminished quickly. By the time he was 2 1/2, I could no longer take him to the grocery store, as he would have a complete meltdown within 10 minutes of entering the store. All of these changes told me my instinct was right.
As Ian's temperament became increasingly perplexing, I relied on a terrific neighbor to guide me as I sought answers. A life-long resident of the community with 3 young sons of her own, Cindy helped me find resources and answers. I saw how her boys interacted with each other and with other kids. Ian was not on the same plane as they were. Sometimes, he wasn't even on the same planet! Friends, family, and doctors told me not to compare Ian to other kids his own age, because "every child is different". Well, duh!
"Every kid is not this different," I would retort. Most people did not understand. But Cindy did. She acknowledge my anguish like only another mother could, and validated it by helping me find resources to head us in the right direction. Cindy and my parents were willing to agree with me that there was something wrong that needed to be addressed. No sugar coating, no lies to make me feel better. It was a relief to know I wasn't insane.
Slowly I began to see behaviors that to me were clearly autism. Ian would spin for minutes at a time and not get dizzy. He would crash into appliances, walls, hard objects, or people repeatedly and seem unscathed. He would zone out and be impossible to pull back to reality. He began to interact with us only on his terms, and we did not understand his terms. Punishment for unacceptable behaviors did not change his motivation. He seemed oblivious to danger. I was terrified to leave him alone for even a second.
We took Ian for a private speech evaluation because the school district we were in said he did not qualify for speech therapy by their guidelines. Ian could not sit still for the testing. He was argumentative and just plain odd. Without getting specific, the therapist told us that Ian was a complex child. She recommended we see a neurologist. She also gave us the diagnoses we needed for him to receive speech therapy through the school system. After that, things began to roll quickly.
Almost immediately, the school's speech therapist recognized Ian had other issues. The occupational therapist was brought in to evaluate him further. She determined he had sensory integration dysfunction. She gave me tons of information to read about it. From those documents I became convinced that Ian had other diagnoses waiting to be discovered.
Just before Ian's 4th birthday, one of my dearest friends of over 20 years came for a visit. The last time we saw each other was just before I got pregnant with Ian. Now I had two kids for her to meet and a lot of catching up to do. Karin was, at the time, an elementary school teacher. We had talked before her arrival about my concerns. She and Ian hit it off immediately. They spent a great deal of time together over the next few days, and Ian thought she was really cool.
The night before Karin left, she wrote "Asperger's Syndrome" on a piece of paper and told me to research it. She had seen it many times before in her classroom and was fairly confident that Ian had it too.
When I read the DSM-III-R definition of Asperger Syndrome, I did not see my child. My blinders suddenly went up. Reality had slapped me in the face and I ran for cover in denial. It took a couple of weeks for it to sink in, but finally I admitted that Karin had hit the mark. I made an appointment with a pediatric neurologist, and we waited 5 months for the date to arrive when we would finally have an answer.
From the time I saw documentable changes in Ian until we had a piece of paper with a doctor's signature next to a diagnosis was just over 2 years. Although at the time it was frustrating to wait so long, not knowing for certain what it was that made my child different from others, I am grateful now for that time. If we had learned immediately that our son had autism, we might have decided against having another child. Our lives are richer because we are four. Ainsley has been good for all of us, but especially for Ian.
The other day at the pool, Ian and Ainsley got into their floaties (hers is a turtle, his is a crab), and they swam across the pool holding hands. Every parent watched them and noticed how special the bond is between them. They are best friends.
In the beginning, I was terrified, frustrated, sad, bewildered. Now I am relieved. Our life is different. It is often very difficult. But today my son blessed me with a smile as he told me that he is happy and proud of who he is. We must be on the right track.
Monday, July 31, 2006
Sunday, July 30, 2006
Tonight's Recipe for Success: Benadryl and Lava
It just dawned on me that I am the one who should be taking all the sleep medication - then I will be unconscious and it won't bother me that Ian is still awake. Perhaps I misunderstood the doctor when he prescribed them. I'll check the labels tomorrow.
Tonight we took a different approach to bed time. At 7:45 we gave Ian half a Benadryl (12.5 mg). He was still very alert and responding well to instructions. After I read two stories to him, he was allowed to read to himself for 30 minutes. At 9:00 it was lights out. Around 9:30 he called me to his room for the first time. He very generously offered me one of his pillows and asked if I would snuggle with him. Within 15 minutes he was asleep.
The deal clincher was probably the new night light I bought him today. It's a miniature lava lamp. Bed time doesn't get much cooler than that.
Tonight we took a different approach to bed time. At 7:45 we gave Ian half a Benadryl (12.5 mg). He was still very alert and responding well to instructions. After I read two stories to him, he was allowed to read to himself for 30 minutes. At 9:00 it was lights out. Around 9:30 he called me to his room for the first time. He very generously offered me one of his pillows and asked if I would snuggle with him. Within 15 minutes he was asleep.
The deal clincher was probably the new night light I bought him today. It's a miniature lava lamp. Bed time doesn't get much cooler than that.
Yawn
The headphones are not working. Clonidine is not working. Melatonin is not working. Snuggling with Mommy is not working.
Ian was awake until midnight last night. Steve and I are about to reach our limit on patience and the ability to keep it cool without sleep.
Tomorrow I start calling psychologists. For Ian. Maybe for me too.
Ian was awake until midnight last night. Steve and I are about to reach our limit on patience and the ability to keep it cool without sleep.
Tomorrow I start calling psychologists. For Ian. Maybe for me too.
Friday, July 28, 2006
See No Evil, Hear No Evil, Go to Sleep
For the last several weeks, Ian has been having extreme difficulty going to sleep at night. He is frightened the second we leave his room and screams for our return 5 or more times before he finally nods off. Some nights he has been awake as late as 12:30 a.m.
While Steve and I realize this is a deeply rooted problem, after the 3rd or 4th screech to get us back upstairs, our patience is running thin. It is difficult not to get angry with him, so we have to play "it's-your-turn-cuz-I-went-the-last-two-times" so we won't lose it.
Ian cannot express what is really bothering him. He says things scare him: his bed, his pillow, his stuffed animals, shadows, the sound of the fish tank, sounds from downstairs, monsters, ghosts - you get the idea. His vision is so bad without his glasses that everything he sees looks scary in the dark.
He also can't turn off his brain. We tried melatonin, and sometimes it helps to relax him. Lately, we've tried Clonidine with mixed results. I hate to drug my kid so much. I want him to be able to wind down on his own.
"BUT HE IS NOT A NEUROTYPICAL CHILD" I remind myself. Sleep may always be elusive for him.
There are so many factors at play - Asperger's Syndrome, sensory defensiveness, and being a 6 year-old to name just a few. Any one of them is enough to throw a typical kid off balance; but combine them in one body and you have mayhem at the end of the day.
We know the sound of the water in the fish tank has been bothering him. Our solution, to move the fish tank out of his room, was unacceptable to Ian. He loves his fish. Sometimes knowing he has to feed them is what gets him out of bed on time in the morning. Steve and I were about to force the issue, when I remembered a gift I purchased for Steve last summer for his birthday. A pair of Bose Quiet Comfort headphones. Steve uses them when he flies because they eliminate the loud jet engine noise, making it possible for him to work comfortably.
We had Ian try them 2 nights ago. He found them uncomfortable at first, I stayed with him until he fell asleep at about 10:10 p.m. Last night, he tried them again. This time he was eager to get comfortable and let them do their job. Again, I stayed with him until he fell asleep, this time at 9:10 p.m. - just 30 minutes after lights out. He was still wearing them when I went in to wake him at 7:00 this morning.
At this point it is impossible to know if it was the headphone or my presence that helped him go to sleep. I am guessing it was the combination that did the trick. Slowly, I'll start leaving a little earlier each night until he is confident he can get to sleep on his own.
No rush though. We both can always use a little snuggle time at the end of the day.
While Steve and I realize this is a deeply rooted problem, after the 3rd or 4th screech to get us back upstairs, our patience is running thin. It is difficult not to get angry with him, so we have to play "it's-your-turn-cuz-I-went-the-last-two-times" so we won't lose it.
Ian cannot express what is really bothering him. He says things scare him: his bed, his pillow, his stuffed animals, shadows, the sound of the fish tank, sounds from downstairs, monsters, ghosts - you get the idea. His vision is so bad without his glasses that everything he sees looks scary in the dark.
He also can't turn off his brain. We tried melatonin, and sometimes it helps to relax him. Lately, we've tried Clonidine with mixed results. I hate to drug my kid so much. I want him to be able to wind down on his own.
"BUT HE IS NOT A NEUROTYPICAL CHILD" I remind myself. Sleep may always be elusive for him.
There are so many factors at play - Asperger's Syndrome, sensory defensiveness, and being a 6 year-old to name just a few. Any one of them is enough to throw a typical kid off balance; but combine them in one body and you have mayhem at the end of the day.
We know the sound of the water in the fish tank has been bothering him. Our solution, to move the fish tank out of his room, was unacceptable to Ian. He loves his fish. Sometimes knowing he has to feed them is what gets him out of bed on time in the morning. Steve and I were about to force the issue, when I remembered a gift I purchased for Steve last summer for his birthday. A pair of Bose Quiet Comfort headphones. Steve uses them when he flies because they eliminate the loud jet engine noise, making it possible for him to work comfortably.
We had Ian try them 2 nights ago. He found them uncomfortable at first, I stayed with him until he fell asleep at about 10:10 p.m. Last night, he tried them again. This time he was eager to get comfortable and let them do their job. Again, I stayed with him until he fell asleep, this time at 9:10 p.m. - just 30 minutes after lights out. He was still wearing them when I went in to wake him at 7:00 this morning.
At this point it is impossible to know if it was the headphone or my presence that helped him go to sleep. I am guessing it was the combination that did the trick. Slowly, I'll start leaving a little earlier each night until he is confident he can get to sleep on his own.
No rush though. We both can always use a little snuggle time at the end of the day.
Wednesday, July 26, 2006
The Mercury Debate and Other Theories
When my son was first diagnosed with Asperger Syndrome, I was angry. I wanted to know how it happened to him. What caused autism to show up in Ian and no one else in my family? Why him? Why us? DAMMIT! I WANT ANSWERS NOW!!!!
Obviously, I was irate. I was hurt and confused. I wanted someone to blame.
For a long time, I blamed the pharmaceutical industry for using mercury in vaccinations as a preservative. Someone determined that kids with autism have very high levels of mercury and other toxic metals in their bodies, and this was attributed to all the vaccines given to infants and small children. Because Ian's changes seemed to occur shortly after his second birthday, I believed it was the vaccines he received at 24 months that had changed my baby into a withdrawn and confused child.
Eventually, I began blaming myself. When Steve and I were trying to get pregnant, we went about it very scientifically. I took my temperature every morning at 5:00, then went into the bathroom to read it and mark the result meticulously on a chart. We put the data in an Excel spreadsheet and made pretty color graphs so we could determine the precise point at which I would become pregnant. We even thought about putting a color copy of this splendiforous work of art in our future baby book - like any kid would actually want to know that much about his or her conception! Yuck!!!
I don't remember which of us decided that making the spreadsheet would be a cool thing to do. Steve and I both had jobs requiring us to be graphically proficient, so it was just natural for us to want to plot any set of data - including my daily temperature and how often we were having sex. To be honest, I am surprised now that we weren't timing ourselves to see how long each coupling lasted or why we did not create a Z-axis to document the positions we used. We had way too much time to think about this stuff. No wonder Ian is obsessive-compulsive!
Anyway, one morning I was very tired and hit the thermometer on the corner of the sink. It shattered, and the mercury was never found. I naturally assumed my own exposure harmed my child, who probably had not even been conceived at that point; but surely the mercury was floating around in my system when he was also floating around inside me. Really, though, I'll never know for certain, and there is no point in beating myself up about it now.
Newer studies suggest mercury is unlikely to be the culprit. The link is just too weak to make me assign blame. I do believe the pharmaceutical industry was extremely reckless about consumer safety in an effort to make big bucks. What's new there? For me, the explanation that is easiest to accept is that my son was genetically predisposed to autism, and something environmental triggered it to appear.
Over the last couple of years, my college roomies have had comparable experiences with their children. The similarities in our lives are almost scary.
* All four of us lived in the same apartment and/or apartment complex for 2 to 3 years.
* All of us went into helping professions (one is an elementary school teacher, one a pharmacist, one a physical therapist, and I am a gerontologist).
* We all waited several years to get married and were in our thirties when we had kids.
* From 1997 to 1999, when the closest cluster of our children were conceived, we were living in "new" cities - in other words, none of us moved back home.
* I believe we were all working during these four pregnancies.
* One had a baby with severe Down Syndrome, another discovered that one of her son's has Tourette Syndrome, and the third recently learned of her daughter's information processing difficulties.
* Two of the affected children were born 2 months apart and the other 2 about 9 months apart.
I don't know if any of that is relevant, but it is interesting for me to make the connections. One thing is certain: our professional expertise has been helpful in dealing with our children's diagnoses.
Isn't it strange, however, that all four of us would have children with disabilities? In the back of our minds, I think we have all wondered if it was really a coincidence. Was it the water we drank, something in the building? Was the complex built on a dump or an old burial ground? Was there something in the nachos and pizza we ate too much of? What was the catalyst?
Two weeks ago when we gathered in our college town, we went to see the old apartment. When we were leaving, we thought those questions aloud for the first time. As we approached the street, we saw something we had completely forgotten. We were living across the street from this:
Had stray electricity fried our ovaries or select eggs? Mutated our genes? Changed us profoundly in a way to cause similar birth defects in our children? More questions, no answers.
I suppose it is no less crazy to suspect electricity than anything else. None of this is scientifically proven, so is it worth investigating? I cannot answer that question. I have limited time and energy, and right now I believe those are better spent finding ways to help Ian the way he is, rather than going down another dead end and not having anything to show for it.
Like any parent who sees their child suffering, I wanted to fix Ian in the beginning, take away the autism and let him be normal the way I see normal. Now that we have lived this life for a while, researched theories, taken some paths that have offered hope and others despair, the one conclusion I can draw is this: no one has the definitive answers I seek. Ian is different in many ways; but he certainly is not deficient in intelligence, in character, in emotion, in strength, or in courage. He is a magnificent human being, as is my daughter, and all of my roommates' children.
Will it really matter if the causes of autism are proven? If my son can feel comfortable with who he is and the way he sees the world, should anyone try to change the foundation upon which he has learned to live? I certainly hope not. I want him to enjoy the world and his life in a way that makes him happy, not the way others see as "normal". He is who he is.
Every parent, every person, must decide whether to live in the past, the present, or the future. I don't see much point in wasting my energy on being ticked off about what happened, even if someone else is to blame. It's over, and being angry won't change the way things are. Worrying about what might one day be isn't much better. Sure, I need to plan for Ian's future (I hear MIT costs $45k per year now...think scholarship!). But if I spend too much time doing that, I'll miss all the wonderful things about today. My family gives me more to appreciate every day, as we stumble along and discover the world in a way we could never have planned.
Obviously, I was irate. I was hurt and confused. I wanted someone to blame.
For a long time, I blamed the pharmaceutical industry for using mercury in vaccinations as a preservative. Someone determined that kids with autism have very high levels of mercury and other toxic metals in their bodies, and this was attributed to all the vaccines given to infants and small children. Because Ian's changes seemed to occur shortly after his second birthday, I believed it was the vaccines he received at 24 months that had changed my baby into a withdrawn and confused child.
Eventually, I began blaming myself. When Steve and I were trying to get pregnant, we went about it very scientifically. I took my temperature every morning at 5:00, then went into the bathroom to read it and mark the result meticulously on a chart. We put the data in an Excel spreadsheet and made pretty color graphs so we could determine the precise point at which I would become pregnant. We even thought about putting a color copy of this splendiforous work of art in our future baby book - like any kid would actually want to know that much about his or her conception! Yuck!!!
I don't remember which of us decided that making the spreadsheet would be a cool thing to do. Steve and I both had jobs requiring us to be graphically proficient, so it was just natural for us to want to plot any set of data - including my daily temperature and how often we were having sex. To be honest, I am surprised now that we weren't timing ourselves to see how long each coupling lasted or why we did not create a Z-axis to document the positions we used. We had way too much time to think about this stuff. No wonder Ian is obsessive-compulsive!
Anyway, one morning I was very tired and hit the thermometer on the corner of the sink. It shattered, and the mercury was never found. I naturally assumed my own exposure harmed my child, who probably had not even been conceived at that point; but surely the mercury was floating around in my system when he was also floating around inside me. Really, though, I'll never know for certain, and there is no point in beating myself up about it now.
Newer studies suggest mercury is unlikely to be the culprit. The link is just too weak to make me assign blame. I do believe the pharmaceutical industry was extremely reckless about consumer safety in an effort to make big bucks. What's new there? For me, the explanation that is easiest to accept is that my son was genetically predisposed to autism, and something environmental triggered it to appear.
Over the last couple of years, my college roomies have had comparable experiences with their children. The similarities in our lives are almost scary.
* All four of us lived in the same apartment and/or apartment complex for 2 to 3 years.
* All of us went into helping professions (one is an elementary school teacher, one a pharmacist, one a physical therapist, and I am a gerontologist).
* We all waited several years to get married and were in our thirties when we had kids.
* From 1997 to 1999, when the closest cluster of our children were conceived, we were living in "new" cities - in other words, none of us moved back home.
* I believe we were all working during these four pregnancies.
* One had a baby with severe Down Syndrome, another discovered that one of her son's has Tourette Syndrome, and the third recently learned of her daughter's information processing difficulties.
* Two of the affected children were born 2 months apart and the other 2 about 9 months apart.
I don't know if any of that is relevant, but it is interesting for me to make the connections. One thing is certain: our professional expertise has been helpful in dealing with our children's diagnoses.
Isn't it strange, however, that all four of us would have children with disabilities? In the back of our minds, I think we have all wondered if it was really a coincidence. Was it the water we drank, something in the building? Was the complex built on a dump or an old burial ground? Was there something in the nachos and pizza we ate too much of? What was the catalyst?
Two weeks ago when we gathered in our college town, we went to see the old apartment. When we were leaving, we thought those questions aloud for the first time. As we approached the street, we saw something we had completely forgotten. We were living across the street from this:
Had stray electricity fried our ovaries or select eggs? Mutated our genes? Changed us profoundly in a way to cause similar birth defects in our children? More questions, no answers.
I suppose it is no less crazy to suspect electricity than anything else. None of this is scientifically proven, so is it worth investigating? I cannot answer that question. I have limited time and energy, and right now I believe those are better spent finding ways to help Ian the way he is, rather than going down another dead end and not having anything to show for it.
Like any parent who sees their child suffering, I wanted to fix Ian in the beginning, take away the autism and let him be normal the way I see normal. Now that we have lived this life for a while, researched theories, taken some paths that have offered hope and others despair, the one conclusion I can draw is this: no one has the definitive answers I seek. Ian is different in many ways; but he certainly is not deficient in intelligence, in character, in emotion, in strength, or in courage. He is a magnificent human being, as is my daughter, and all of my roommates' children.
Will it really matter if the causes of autism are proven? If my son can feel comfortable with who he is and the way he sees the world, should anyone try to change the foundation upon which he has learned to live? I certainly hope not. I want him to enjoy the world and his life in a way that makes him happy, not the way others see as "normal". He is who he is.
Every parent, every person, must decide whether to live in the past, the present, or the future. I don't see much point in wasting my energy on being ticked off about what happened, even if someone else is to blame. It's over, and being angry won't change the way things are. Worrying about what might one day be isn't much better. Sure, I need to plan for Ian's future (I hear MIT costs $45k per year now...think scholarship!). But if I spend too much time doing that, I'll miss all the wonderful things about today. My family gives me more to appreciate every day, as we stumble along and discover the world in a way we could never have planned.
Monday, July 24, 2006
Beauty is in the Eye of the Beholder
Sometimes you have to examine the simple things in life in order to get the big picture.
Our frenzied trip to Oklahoma this weekend went AMAZINGLY well. We're all exhausted. The kids are sleeping late this morning while I lazily begin unpacking, sorting, and doing laundry. It's a good way to start the new week.
The plan on Saturday was to meet my college roomies and all of their kids at the Tulsa zoo. When Ian and Ainsley found out there was a butterfly exhibit, that is all they wanted to see. Oh, sure, they enjoyed the elephants and primates, thought the enormous catfish and alligators were cool. They even shared some French fries at lunch time without too much of an argument as long as the ketchup was readily at hand.
When we finally found the "Wings of Wonder" exhibit, they couldn't wait to hand the attendant their gold coins at the entrance. We quickly discovered that the wait in line would be about 45 minutes. The adults knew our kids would not survive that kind of a delay without major behavior issues creeping up, so we opted to detour to another exhibit and return later. Ian did not handle that transition well at first. When we reassured him that after we went through the rain forest we would come right back, he agreed. Then he quickly began telling us about all of the creatures we would see in the rain forest, what they liked to eat, and where they preferred to seek shelter. Sherri and I giggled knowingly.
The line to see the butterflies was down to about 30 minutes and was well worth it. The quiet calming effect the butterflies had on the kids came just in time. Watching the wings flutter silently as the colorful creatures landed gracefully on petals made wonderful smiles. Ian was disappointed that none of them would land on his finger. I told him I had taken lots of pictures of the butterflies and that he could choose one to hang on his bedroom wall. Then it would be there for him to remember our great trip to the zoo. He thought that was a good idea and decided it was o.k. to move on.
Upon returning to my mother-in-law's house early in the evening, Ian curled up in a chair away from all the family, put on his headphones and worked with his leap pad. Within 45 minutes, he was a new kid. We drove 2 hours to my parents' house with very quiet children and one panting dog. And no tired meltdown.
Sunday was less hectic in the morning. We had time to enjoy a leisurely breakfast, then headed to my sister's house for her daughter's birthday party. We assumed since swimming was involved both of our kids would be eager to dive in and get splashing. Ainsley wasted no time. Ian, however, was extremely hesitant to enter the pool. As each new child arrived at they party, Ian withdrew more until finally he decided swimming was no longer part of his agenda for the day. He retreated inside.
I know my son well enough to realize that when he wants to be alone, you respect his wishes and help him find a comfortable place to decompress. He spent most of the rest of the day indoors, away from the screaming and splashing. It was good for him. It is even better that he knows when it's time to pull away.
When it was time for birthday cake, he perked up. My mother was so sweet: she made a special milk-free chocolate cake just for Ian. He was so excited to know he could have as much of it as he wanted. I cut him a huge piece, dripping with thick, gooey, chocolate frosting. He went outside with the other kids and started eating. That cake made his whole day. Suddenly, he was ready to play with the other kids - well, not the ones he didn't know, but at least he wanted to be around his cousins at that point.
The rest of the afternoon went very smoothly, as did the ride home. Until we were about 4 miles from our house. Everyone was very tired, as it was about 9:15 p.m. and no one except Steve had slept in the van. Even the dog stood and panted the entire 3 1/2 hours. The kids started a battle over something, and the next thing we knew headphones were flying across the back seat. Ainsley got decked in the nose. No major damage, thank goodness.
At home, the exhaustion was almost unbearable. Ainsley was crying, Ian was coming unglued, and Steve wasn't going to listen to any of it. Normally, I put Ainsley to bed and Steve takes Ian; this time we switched because the 2 Monsters I drank on the way home left me in a better mood to deal with the wild boy.
He was ranting in his usual Asperger's way: yelling about things that didn't make sense just so he could vent all the steam that had built up over the weekend. Sugar (the dog) had finally crashed next to Ian's bed. I gently stroked her head and said, "Ian, I think Sugar wants to sleep in your room tonight. Would that be o.k.?"
Ian suddenly stopped screaming, quit stomping his feat, ceased flailing his arms. "Yes, I think that would be o.k.," he calmly answered.
"Could you please come over here and tell Sugar it's o.k. for her to stay? She is so tired. I think she needs you to pat her head a little." I requested.
Ian approached slowly. He bent down next to the dog and gingerly placed his hand on her drowsy head. "It's o.k. Sugar," he whispered. "You can sleep with me tonight." He stayed beside her for the several minutes, petting her sides, back, and head. I crept out of the room to go kiss Ainsley good night. Then Steve went to see what was going on with Ian.
After a few minutes, Ian put on his pajamas, brushed his teeth, and got into bed. No more arguments, no more yelling. Just calm.
Yes, the weekend was a blur. Yes, we attempted to do much more than we should have. Yes, we will all pay the price today. Was it worth it? Seeing my children interact well with other kids is a beautiful thing. Watching them appreciate the wonders of nature is priceless. Putting them to the test and seeing that they can handle it means they are getting it. And THAT is absolutely worth it.
Friday, July 21, 2006
Calm Before the Storm
We're off today for a whirlwind trip to Oklahoma (or in our case, it may involve tornadoes). I am hopeful that I will be able to keep it together enought to help the kids keep it together.
This photo was taken over Norman, Oklahoma on 7/15/06
Wednesday, July 19, 2006
Compassion...It's not Just for NT's* Anymore
Ian has always had difficulty seeing and accepting other people's points of view. Rigid thinking is one of the barriers that keeps him from forming friendships. Granted, at age 6, how complex is any child's ability in that regard? I have to think, however, that if my 3 year-old daughter can at times show compassion for others and accept differences of opinion, then Ian can work on it too.
I first learned the term "neurotypical" (or NT*) from something I ready by Temple Grandin. She is one of my autism heroes, and I hope one day she will be one of Ian's as well. NT's are people whose sensory systems/neurological systems are normal. One of the reasons emotions and connectedness are so difficult for people with autism is because (in layman's terms) the part of the brain that deals with emotions is missing some connections to the rest of the neurological system. Of course, it is more complex than that, and Dr. Grandin explains it much better than I can. I am an NT, my son is an Aspie. We are comfortable with that terminology.
This is not to say my son does not feel emotions - he does; but HOW he feels them is confusing to him and most likely very different from the rest of us. This is one of the reasons he becomes so easily frustrated - he feels we are all picking on him. If someone wants something different from what he wants, he does not understand why we may choose the other person's preference for the entire group. In the past, if we offered a compromise - such as playing the other person's game first and playing his second - he would have a meltdown because his preference did not take priority. A compromise just wasn't good enough and/or his world could not deal with such an incongruity.
In the last few days, however, I have seen a change in him that warms my heart (or maybe it is the 107 degree temperatures we're having, or a hotflash, who knows?). Ainsley has decided she wants to sit in Ian's seat in the car. Not a big deal; most kids would welcome trading places for a change of pace. Not for an Aspie, though. Ritual and consistency provide a predicatable environment and comfort. In other words, Ian is a SEVERE creature of habit. The first time this happened I fully expected Ian to be furious. Although a very long and loud discussion ensued, we were finally able to reach a compromise that the kids would trade seats each time we got in the car that day. After that, the argument was settled. They have been trading seats each car ride ever since.
Today, Ainsley desperately wanted to listen to her favorite song on the Dora the Explorer "Dance Party" CD. Ian wanted to listen to his favorite song, which happened to be playing when I started the van. Ainsley yelled and argued in typical 3 year-old fashion. Ian quietly tried to reason with her. She just got louder and more obnoxious. Finally, Ian said, "Mom, it's o.k. to play Ainsley's song. I don't want her to be mad."
Kuh-thud! Did I hit something? Is the sky falling? Am I dreaming?
"Ian," I said. "That is really nice of you to offer, but I think Ainsley needs to learn to be more polite. When she can stop yelling and be more respectful of the other people in the car, we will listen to her song. Right now, we'll enjoy your song."
Honestly, I don't remember driving the next 2 miles, because I was still going over his statement in my head and wondering how he came to be such an agreeable child at times.
This afternoon, as the kids and I were playing in the toy room, I suggested we take a quick break to clean up some of the toys. I told Ian that the train track he and Ainsley had built from one end of the play room, across the bridge, and into the hallway by their rooms was getting to be kind of dangerous. I explained that last night I stepped on it when I went upstairs to check on them.
"I'm sorry we left the train track out, Mom," Ian said. "I will pick it up so you won't get hurt again."
CCCCCRRRRAAAAAACCCCCKKKKK! Did lightning strike?
I never said I had been hurt (although my pinky toe hurt like hell when it got pinched between the tracks). My son has never made such a complex connection without having it broken down into tiny pieces and put together for him, much less expressed it in a complete thought. He voluntarily began picking up his trains and putting them in a bucket without my close supervision. I was so happy I wanted to cry.
And it lasted about 15 seconds. That was all the cleaning up he could handle, and he went right back to playing with his Bionicles. Damn, I really thought we were on a roll!
Actually, we were, and still are. His understanding of other people's feelings and his own is definitely growing. He is beginning to expand his knowledge beyond his own safety bubble. He must be terrified. Hopefully, each new revelation will bring with it a feeling of success for him so that he will continue to take the risks that can be so rewarding. I don't know if his brain will ever allow him to feel the depth of emotional connectedness to others that I feel. But I think what he has experienced this week is a good start.
I first learned the term "neurotypical" (or NT*) from something I ready by Temple Grandin. She is one of my autism heroes, and I hope one day she will be one of Ian's as well. NT's are people whose sensory systems/neurological systems are normal. One of the reasons emotions and connectedness are so difficult for people with autism is because (in layman's terms) the part of the brain that deals with emotions is missing some connections to the rest of the neurological system. Of course, it is more complex than that, and Dr. Grandin explains it much better than I can. I am an NT, my son is an Aspie. We are comfortable with that terminology.
This is not to say my son does not feel emotions - he does; but HOW he feels them is confusing to him and most likely very different from the rest of us. This is one of the reasons he becomes so easily frustrated - he feels we are all picking on him. If someone wants something different from what he wants, he does not understand why we may choose the other person's preference for the entire group. In the past, if we offered a compromise - such as playing the other person's game first and playing his second - he would have a meltdown because his preference did not take priority. A compromise just wasn't good enough and/or his world could not deal with such an incongruity.
In the last few days, however, I have seen a change in him that warms my heart (or maybe it is the 107 degree temperatures we're having, or a hotflash, who knows?). Ainsley has decided she wants to sit in Ian's seat in the car. Not a big deal; most kids would welcome trading places for a change of pace. Not for an Aspie, though. Ritual and consistency provide a predicatable environment and comfort. In other words, Ian is a SEVERE creature of habit. The first time this happened I fully expected Ian to be furious. Although a very long and loud discussion ensued, we were finally able to reach a compromise that the kids would trade seats each time we got in the car that day. After that, the argument was settled. They have been trading seats each car ride ever since.
Today, Ainsley desperately wanted to listen to her favorite song on the Dora the Explorer "Dance Party" CD. Ian wanted to listen to his favorite song, which happened to be playing when I started the van. Ainsley yelled and argued in typical 3 year-old fashion. Ian quietly tried to reason with her. She just got louder and more obnoxious. Finally, Ian said, "Mom, it's o.k. to play Ainsley's song. I don't want her to be mad."
Kuh-thud! Did I hit something? Is the sky falling? Am I dreaming?
"Ian," I said. "That is really nice of you to offer, but I think Ainsley needs to learn to be more polite. When she can stop yelling and be more respectful of the other people in the car, we will listen to her song. Right now, we'll enjoy your song."
Honestly, I don't remember driving the next 2 miles, because I was still going over his statement in my head and wondering how he came to be such an agreeable child at times.
This afternoon, as the kids and I were playing in the toy room, I suggested we take a quick break to clean up some of the toys. I told Ian that the train track he and Ainsley had built from one end of the play room, across the bridge, and into the hallway by their rooms was getting to be kind of dangerous. I explained that last night I stepped on it when I went upstairs to check on them.
"I'm sorry we left the train track out, Mom," Ian said. "I will pick it up so you won't get hurt again."
CCCCCRRRRAAAAAACCCCCKKKKK! Did lightning strike?
I never said I had been hurt (although my pinky toe hurt like hell when it got pinched between the tracks). My son has never made such a complex connection without having it broken down into tiny pieces and put together for him, much less expressed it in a complete thought. He voluntarily began picking up his trains and putting them in a bucket without my close supervision. I was so happy I wanted to cry.
And it lasted about 15 seconds. That was all the cleaning up he could handle, and he went right back to playing with his Bionicles. Damn, I really thought we were on a roll!
Actually, we were, and still are. His understanding of other people's feelings and his own is definitely growing. He is beginning to expand his knowledge beyond his own safety bubble. He must be terrified. Hopefully, each new revelation will bring with it a feeling of success for him so that he will continue to take the risks that can be so rewarding. I don't know if his brain will ever allow him to feel the depth of emotional connectedness to others that I feel. But I think what he has experienced this week is a good start.
Monday, July 17, 2006
Getting Through
It's another Kung Fu Monday night, that wickedest of weeknights for this family. I decided after last week that I could no longer watch Ian stand around in class, lost in the grunting around him. It is just too painful for me to see him that way, and I don't seem to be able to help. Perhaps my presence is a distraction.
Hoping that my absense would be a relief to him, Ainsley and I opted to try out the water park outside the rec center. We kept our plan quiet, as I was concerned Ian would want to skip Kung Fu class to go with us. He seemed oblivious, despite his outward appearance of having it all together. I held my breath as Ainsley and I sneaked off to the pool area. The fact that we were wearing swim suits didn't even phase him. We both had a great time. Even the warm water felt cool in the 101 degree air - and that was at 7:30 p.m.
There are many problems in working out with other kids. One is that Ian doesn't relate well to his peers in the class because he doesn't know them personally. He functions well with adults or alone. Another challenge is that the other little guys in the class spend much of their time goofing around when Sifu isn't watching. Ian needs a serious partner who will challenge him. There are a couple of boys who take it very seriously, but they are brown belts and way beyond Ian's capabilities now. He would probably do well to work with them, because they wouldn't be afraid to throw a punch, but at this point they might feel a little cheated.
The biggest problem is me. I can't watch my baby take a beating, even if he knows how to defend himself. Actually, the kids really don't get hurt. No one tries hard enough to hurt anyone. It's the adults in the class that end up getting bruised. Still, it is difficult for me to watch him struggle, especially when it is with something about which I have little or no knowledge. Staying away from class may be the best way I can help him. Not having Ainsley in the room being cute and attracting attention will also help.
After class, I spoke with Sifu to find out how Ian had done. His wife, who is also a black belt, worked one-on-one with Ian. She was tough and made him do what she said. When he wouldn't listen, she made him sit out. Ian didn't like that idea tonight, so he worked hard. He said he really enjoyed it and learned a lot. And...he was still very alert when class ended!
I am so looking forward to picking him up from class on Wednesday night to see if his enthusiasm continues. I don't want him to give up just because it is starting to become difficult. If he learns that getting help with the tough stuff is o.k., he'll learn how to do things the right way instead of making it up as he goes along.
Hoping that my absense would be a relief to him, Ainsley and I opted to try out the water park outside the rec center. We kept our plan quiet, as I was concerned Ian would want to skip Kung Fu class to go with us. He seemed oblivious, despite his outward appearance of having it all together. I held my breath as Ainsley and I sneaked off to the pool area. The fact that we were wearing swim suits didn't even phase him. We both had a great time. Even the warm water felt cool in the 101 degree air - and that was at 7:30 p.m.
There are many problems in working out with other kids. One is that Ian doesn't relate well to his peers in the class because he doesn't know them personally. He functions well with adults or alone. Another challenge is that the other little guys in the class spend much of their time goofing around when Sifu isn't watching. Ian needs a serious partner who will challenge him. There are a couple of boys who take it very seriously, but they are brown belts and way beyond Ian's capabilities now. He would probably do well to work with them, because they wouldn't be afraid to throw a punch, but at this point they might feel a little cheated.
The biggest problem is me. I can't watch my baby take a beating, even if he knows how to defend himself. Actually, the kids really don't get hurt. No one tries hard enough to hurt anyone. It's the adults in the class that end up getting bruised. Still, it is difficult for me to watch him struggle, especially when it is with something about which I have little or no knowledge. Staying away from class may be the best way I can help him. Not having Ainsley in the room being cute and attracting attention will also help.
After class, I spoke with Sifu to find out how Ian had done. His wife, who is also a black belt, worked one-on-one with Ian. She was tough and made him do what she said. When he wouldn't listen, she made him sit out. Ian didn't like that idea tonight, so he worked hard. He said he really enjoyed it and learned a lot. And...he was still very alert when class ended!
I am so looking forward to picking him up from class on Wednesday night to see if his enthusiasm continues. I don't want him to give up just because it is starting to become difficult. If he learns that getting help with the tough stuff is o.k., he'll learn how to do things the right way instead of making it up as he goes along.
Friday, July 14, 2006
Learning How to Play
I have begun my quest for seminars and conferences that will provide useful information on Asperger's for my family. If the planners of these events will just start scheduling the ones I want to attend at 5 star spas, we'll be in serious business. I was fortunate to attend one in Dallas this spring, at which Tony Attwood was speaking. He is one of my autism heros, and I would probably fly to the moon to hear him speak again, spa locale optional.
At the conference one of the many helpful resources I found was a book called The Social Skills Picture Book: Teaching play, emotion, and communication to children with autism by Jed Baker, Ph. D.
Ian loves this book.
It provides photographs of social situations that can be challenging for kids on the autism spectrum. They are what the author calls "social skills picture stories", and they are excellent for teaching concepts to visual learners. Included are conversation bubbles, like in cartoons, which reinforce the text above the pictures. Part of the book's appeal to my 6 year-old are the children in the pictures, as they are at or around his age.
The picture stories are divided into 3 areas: Communication Related Skills, Play Related Skills, and Emotion Related Skills. Each situation is very similar to an encounter Ian has had with other people over the last couple of years. We can recall those situations and maximize the value of each exercise. He will spend half an hour or more reading the book on his own, but he learns more if an adult participates by asking him questions about each situation.
Just now, as I was working on this post, I heard Ainsley begin to cry in the living room. She had been running and fell. Before I reached the room, I overheard Ian saying, "It will be o.k., Ainsley. Don't cry," with such empathy I could hardly believe this was my son. He then leaned over and kissed Ainsley's scraped toe. "There," he said. "Now your boo-boo will feel better."
Ian has seen me do this a million times with each of them; but rarely does he take such a keen interest when Ainsley is hurt - mainly because she is always crying to get attention. He really seemed concerned, and Ainsley was definately comforted by his compassion.
I'll have to remember these moments the next time they are pummeling each other over a toy or trying to kill each other some way.
At the conference one of the many helpful resources I found was a book called The Social Skills Picture Book: Teaching play, emotion, and communication to children with autism by Jed Baker, Ph. D.
Ian loves this book.
It provides photographs of social situations that can be challenging for kids on the autism spectrum. They are what the author calls "social skills picture stories", and they are excellent for teaching concepts to visual learners. Included are conversation bubbles, like in cartoons, which reinforce the text above the pictures. Part of the book's appeal to my 6 year-old are the children in the pictures, as they are at or around his age.
The picture stories are divided into 3 areas: Communication Related Skills, Play Related Skills, and Emotion Related Skills. Each situation is very similar to an encounter Ian has had with other people over the last couple of years. We can recall those situations and maximize the value of each exercise. He will spend half an hour or more reading the book on his own, but he learns more if an adult participates by asking him questions about each situation.
Just now, as I was working on this post, I heard Ainsley begin to cry in the living room. She had been running and fell. Before I reached the room, I overheard Ian saying, "It will be o.k., Ainsley. Don't cry," with such empathy I could hardly believe this was my son. He then leaned over and kissed Ainsley's scraped toe. "There," he said. "Now your boo-boo will feel better."
Ian has seen me do this a million times with each of them; but rarely does he take such a keen interest when Ainsley is hurt - mainly because she is always crying to get attention. He really seemed concerned, and Ainsley was definately comforted by his compassion.
I'll have to remember these moments the next time they are pummeling each other over a toy or trying to kill each other some way.
Thursday, July 13, 2006
O.K., So I'm a Wimp
I admit it...I didn't fire Ian's specialist.
Telling him that I quit giving Ian most of his supplements was easier than I thought it would be, mainly because I got to practice first on a third year medical student who was doing a rotation in his office. She was with the nurse who usually gets all the updated information. The nurse has never cracked a smile. You can tell by the way her mouth turns down that it is following the path of gravity. How sad that she cannot find anything to smile about. She looks down her nose and over her glasses at you like you've done something wrong when you are reporting what has transpired with your child since the last visit. She reminds me of my second grade teacher - the only one I was ever afraid of.
The doctor keeps bringing up chelation. My feeling about chelation (and by definition this is true) is that it is for treating people who have toxic metal poisoning. Ian's test results indicate he is at acceptable levels for all heavy metals. It seems that putting a child through such a treatment would be like giving chemotherapy to someone who does not have cancer.
On the other hand, Ian's epinephrine is low, his norepinephrin is high, dopamine is through the roof, and serotonin is extremely high. The doctor said this could account for some of the violent behavior we have seen in Ian lately, and it is probably a good thing that we are giving him a break from the supplements. We'll test him again in a month and then reconsider our options after he has adjusted to the new Concerta dose.
I feel much better about the doctor-parent-patient relationship knowing I have made it clear that I don't just give my kid pills and then wait for the next appointment to roll around before I think about what is happening to him. I monitor Ian closely, EVERY day, so I can piece together the different elements of his treatment and his environment and the effect they have on him.
The main concern I have now is alleviating his anxiety so he can sleep at night. We tried a teeny tiny dose of Clonidine last night, and it seemed to do the trick. He fell asleep at 10:40 (instead of midnight) and slept until 8:00 a.m. Tonight I am going to zap him at 8:00 and see if he'll sleep until 10:40 a.m. Gosh, that sounds lovely! Hopefully, this will get him on the right track and he won't need it for very long.
He has had a really good day. He has been alert and in a terrific mood. At the pool, in front of everyone, he wasn't embarrassed to hug me. During the school year he prefers to give me his good-bye kiss in the laundry room so his friends outside won't see. It's nice to know he doesn't always want to banish me to New York. I would like to think I had a hand in helping him feel better about himself and about his crazy mom.
Telling him that I quit giving Ian most of his supplements was easier than I thought it would be, mainly because I got to practice first on a third year medical student who was doing a rotation in his office. She was with the nurse who usually gets all the updated information. The nurse has never cracked a smile. You can tell by the way her mouth turns down that it is following the path of gravity. How sad that she cannot find anything to smile about. She looks down her nose and over her glasses at you like you've done something wrong when you are reporting what has transpired with your child since the last visit. She reminds me of my second grade teacher - the only one I was ever afraid of.
The doctor keeps bringing up chelation. My feeling about chelation (and by definition this is true) is that it is for treating people who have toxic metal poisoning. Ian's test results indicate he is at acceptable levels for all heavy metals. It seems that putting a child through such a treatment would be like giving chemotherapy to someone who does not have cancer.
On the other hand, Ian's epinephrine is low, his norepinephrin is high, dopamine is through the roof, and serotonin is extremely high. The doctor said this could account for some of the violent behavior we have seen in Ian lately, and it is probably a good thing that we are giving him a break from the supplements. We'll test him again in a month and then reconsider our options after he has adjusted to the new Concerta dose.
I feel much better about the doctor-parent-patient relationship knowing I have made it clear that I don't just give my kid pills and then wait for the next appointment to roll around before I think about what is happening to him. I monitor Ian closely, EVERY day, so I can piece together the different elements of his treatment and his environment and the effect they have on him.
The main concern I have now is alleviating his anxiety so he can sleep at night. We tried a teeny tiny dose of Clonidine last night, and it seemed to do the trick. He fell asleep at 10:40 (instead of midnight) and slept until 8:00 a.m. Tonight I am going to zap him at 8:00 and see if he'll sleep until 10:40 a.m. Gosh, that sounds lovely! Hopefully, this will get him on the right track and he won't need it for very long.
He has had a really good day. He has been alert and in a terrific mood. At the pool, in front of everyone, he wasn't embarrassed to hug me. During the school year he prefers to give me his good-bye kiss in the laundry room so his friends outside won't see. It's nice to know he doesn't always want to banish me to New York. I would like to think I had a hand in helping him feel better about himself and about his crazy mom.
Wednesday, July 12, 2006
Why Can't They Stay This Adorable Forever?
My children made me proud today. They actively and attentively sat through a photo shoot of over 90 pictures. They had just as much fun posing for the camera as they did squirting me with water yesterday.
Ainsley even waited to dump in her new Care Bear undies until the photographer was finished. What more could I possibly ask for?
Ainsley's new favorite book is Put Me in the Zoo.
"Hey, there's no candy in here!"
It's amazing what a photographer can accomplish just by saying, "boogers and snot".
Ainsley even waited to dump in her new Care Bear undies until the photographer was finished. What more could I possibly ask for?
Ainsley's new favorite book is Put Me in the Zoo.
"Hey, there's no candy in here!"
It's amazing what a photographer can accomplish just by saying, "boogers and snot".
Tuesday, July 11, 2006
Wonders of a Boy and his Water Gun
Damn, Texas is hot in the summer. And humid, too. It's enough to make anyone cranky. Add to the 97 degree temperature the $1,200 I spent on new tires, an oil change, and a few other maintenance services plus the distance Ian and I walked in the mid-afternoon sun to pick up said vehicle and you have two ragged, sweaty people.
The first place we drove on our new tires was to Walgreen's to buy water guns. Possibly the best money I've spent all summer.
The kids couldn't wait to get to the pool. Quite frankly, neither could I. Each armed with his/her preferred water weapon, we ran to the pool and began loading with ammo. The only rule of this water fight was "no squirting anyone in the eyes or face".
The giggles were contagious. Other kids got involved with their own squirt toys. It was complete mayhem, and it was fabulous!
Eventually, I surrendered my weapon to a nice young lad who wanted to try it. Ian did a great job sharing, fought fairly, and had a smile on his face all afternoon. When conversation is not a requirement, he fits in well with his peers.
If I had remembered before now how much fun a good water fight is, I would have relinquished my reservations toward toy weaponry. In an effort to be politically correct I forgot that sometimes kids just have to be kids.
The first place we drove on our new tires was to Walgreen's to buy water guns. Possibly the best money I've spent all summer.
The kids couldn't wait to get to the pool. Quite frankly, neither could I. Each armed with his/her preferred water weapon, we ran to the pool and began loading with ammo. The only rule of this water fight was "no squirting anyone in the eyes or face".
The giggles were contagious. Other kids got involved with their own squirt toys. It was complete mayhem, and it was fabulous!
Eventually, I surrendered my weapon to a nice young lad who wanted to try it. Ian did a great job sharing, fought fairly, and had a smile on his face all afternoon. When conversation is not a requirement, he fits in well with his peers.
If I had remembered before now how much fun a good water fight is, I would have relinquished my reservations toward toy weaponry. In an effort to be politically correct I forgot that sometimes kids just have to be kids.
Sunday, July 09, 2006
Day 2 of Going Cold Turkey
It is difficult to watch for changes in a person, especially when you are expecting them. You tend to see what you want to see. That is how we were when Ian was taking so many supplements - we saw improvements because we wanted them to be there.
Today I tried not to look for much of anything. Instead, I hoped for a good day. Period. And that is what we had.
It is important to acknowledge that on Friday we increased Ian's Concerta dosage from 18mg to 27mg. That in itself called for close monitoring of his behavior. Taking away the supplements the next day, I believe, will help us determine more accurately if this was the right course of action.
He didn't eat much for most of the day. We spent 3 hours at the pool. There is no telling where he got the energy to swim that long. AND he interacted well with some other children. When we were getting ready to leave, he very slyly tried to sneak out with another kid's remote control air boat, contending that the other kid must not want it if he wasn't playing with it. This is one of Ian's favorite theories of toy possession. He was persuaded to give the boat back to its rightful owner, and we left without having to carry any screaming children to the car. It was a lovely exit.
As soon as we walked in the door, the kids wanted to bake a cake. Oi! It was 94 degrees outside! I know helping out in the kitchen is good for them, but they do not cooperate well when it comes to measuring ingredients. They both become extremely competitive over 2 things: salt and eggs. For the life of me, I can't figure out why those ingredients spark furious arguments, but they do. Add to that my own freakish need to maintain control of my kitchen, and you can see how the 3 of us do not blend well in the food preparation arena.
Before the cake mixing was complete, they found a Kool-Aid packet and began to tear it open. Ian assumed that because it was "invisible" Kool-Aid, it wouldn't make a mess. In case you are not a Kool-Aid aficionado, I shall explain. Invisible Kool-Aid is clear, so the flavor is a mystery until you taste it. The beauty of it is that it doesn't stain clothing and carpet when it is spilled. All I can say is, "IT'S ABOUT FRIGGIN' TIME!!!"
Steve came to the kitchen to supervise the drink mix preparation while I finished putting the cake in the oven. He quickly learned that 2 children and one measuring cup are a bad combination, especially when they are next to an open and very full container of Splenda. I tried not to watch. Sometimes it's better if I just don't see what is happening.
The rest of the evening went extremely well. Ian ate most of his dinner, cleared his plate from the table, took a bath, read a story with Steve, and went to bed. About 30 minutes later, we realized he had not called us back to his room to chase away monsters. Wow!
Thirty-one minutes after going to bed, I heard him call "Hello...Mom? Anybody?"
I ascended the stairs expecting the usual. When I got to his room, Ian simply asked for a glass of water and some snuggle buddies. I held my breath and walked quietly down the stairs. He remained quiet until 11:15, when my presence was again softly requested. Another drink of water was all he needed. No mention of monsters. Unbelievable.
Although I am not ready to make any assumptions about this sudden and dramatic change in his bedtime routine, I am willing to say this is a positive FIRST step in the right direction.
Now, it is almost midnight. The house is quiet, and everyone else is asleep. It doesn't matter how tired I'll be tomorrow. I am just glad to have some time to savor the contentment I feel at the end of a good day.
Today I tried not to look for much of anything. Instead, I hoped for a good day. Period. And that is what we had.
It is important to acknowledge that on Friday we increased Ian's Concerta dosage from 18mg to 27mg. That in itself called for close monitoring of his behavior. Taking away the supplements the next day, I believe, will help us determine more accurately if this was the right course of action.
He didn't eat much for most of the day. We spent 3 hours at the pool. There is no telling where he got the energy to swim that long. AND he interacted well with some other children. When we were getting ready to leave, he very slyly tried to sneak out with another kid's remote control air boat, contending that the other kid must not want it if he wasn't playing with it. This is one of Ian's favorite theories of toy possession. He was persuaded to give the boat back to its rightful owner, and we left without having to carry any screaming children to the car. It was a lovely exit.
As soon as we walked in the door, the kids wanted to bake a cake. Oi! It was 94 degrees outside! I know helping out in the kitchen is good for them, but they do not cooperate well when it comes to measuring ingredients. They both become extremely competitive over 2 things: salt and eggs. For the life of me, I can't figure out why those ingredients spark furious arguments, but they do. Add to that my own freakish need to maintain control of my kitchen, and you can see how the 3 of us do not blend well in the food preparation arena.
Before the cake mixing was complete, they found a Kool-Aid packet and began to tear it open. Ian assumed that because it was "invisible" Kool-Aid, it wouldn't make a mess. In case you are not a Kool-Aid aficionado, I shall explain. Invisible Kool-Aid is clear, so the flavor is a mystery until you taste it. The beauty of it is that it doesn't stain clothing and carpet when it is spilled. All I can say is, "IT'S ABOUT FRIGGIN' TIME!!!"
Steve came to the kitchen to supervise the drink mix preparation while I finished putting the cake in the oven. He quickly learned that 2 children and one measuring cup are a bad combination, especially when they are next to an open and very full container of Splenda. I tried not to watch. Sometimes it's better if I just don't see what is happening.
The rest of the evening went extremely well. Ian ate most of his dinner, cleared his plate from the table, took a bath, read a story with Steve, and went to bed. About 30 minutes later, we realized he had not called us back to his room to chase away monsters. Wow!
Thirty-one minutes after going to bed, I heard him call "Hello...Mom? Anybody?"
I ascended the stairs expecting the usual. When I got to his room, Ian simply asked for a glass of water and some snuggle buddies. I held my breath and walked quietly down the stairs. He remained quiet until 11:15, when my presence was again softly requested. Another drink of water was all he needed. No mention of monsters. Unbelievable.
Although I am not ready to make any assumptions about this sudden and dramatic change in his bedtime routine, I am willing to say this is a positive FIRST step in the right direction.
Now, it is almost midnight. The house is quiet, and everyone else is asleep. It doesn't matter how tired I'll be tomorrow. I am just glad to have some time to savor the contentment I feel at the end of a good day.
Saturday, July 08, 2006
Back to Basics
There comes a time in every challenge when you have to stop and ask yourself if you're heading in the right direction. Over the last few weeks, I have been examining the treatments and approaches we use with Ian, trying to determine which ones seem to be helping and which ones we should abandon. As a mother, I want my son to be healthy and happy, but right now he looks to be neither.
He is so thin. At age 6.5 years he can still wear a size 4 or 5 pants in the waist (certainly not in length). His appetite has been extremely poor most of the summer, with occasional episodes of rampant devouring of an evening meal and everything else within reach. Generally, he is unmotivated to eat.
Anxiety crept in and now overshadows many of the activities he used to enjoy. Ian finds it difficult to play alone with his toys, calling for us to come sit with him while he scans mounds of Legos for a particular piece. He rarely wants us to play with him, only to be with him. When I offer to call a friend for a play date, he declines.
At night, he calls us to his room 5 or 6 times because he is scared of monsters. Last night my dad exorcized them after both Steve and I failed to make him believe there weren't any there to begin with. Ian fell asleep shortly after that, so perhaps dad's seminary training has far reaching benefits he never expected. We'll see if Ian remembers tonight.
Ian's inability to pay attention, obsessive-compulsive behavior, violent outbursts, and rigid thinking seem to have worsened. All of these were supposed to be helped by the supplements he has been taking over the last 7 months. I am now almost certain that most of them have been a waste of time and money.
A few months ago I asked a trusted friend who I should believe when two physicians make conflicting recommendations. My friend advised me to follow the one who does not stand to gain financially by the diagnosis or recommended treatment. The more I think about it, the more it makes sense and the more I realize that I was blinded by a false sense of hope. Ian has been pumped full of pills in such an unscientific manner it's no wonder we don't know if anything is helping or hurting him.
So, I have made a decision. Today I am taking Ian off everything except Concerta (for ADHD), fish oil (for omega-3s), and magnesium citrate (for constipation). We will keep these three because I know they help him and/or are good for him. The remaining supplements (Pro-Bio Gold, 5-HTP, melatonin, taurine, and GABA) - 8 pills a day - will be put away until Steve and I can determine if there has been a change in his well-being. Ian has agreed that in place of his pills he gets to have a tablespoon of organic peanut butter with every meal. If that doesn't help him put on some weight, we'll try something else.
In addition to my wise friend's helpful suggestion, I consulted a number of websites. The most compelling one was www.autism-watch.org. My mind looks for scientific answers to my questions. When answers are not available, common sense is my guide. This website confirmed what my gut was already telling me - and my gut has never been wrong.
Maybe this means I have given up hope for a cure for Ian. I don't want to change his personality or the innate person that lies within. My hope is that he will one day be free of the fear and anxiety that torment him now so that he can be successful in and passionate about his interests and feel joy in his soul. These are skills to be acquired through education and life's experiences, not consumed in a pill.
Sure, we'll probably consider anti-depressants for him at some point because his journey is going to be extremely difficult. The whole family may well be on them before long. I truly believe, however, that if we use common sense, we'll all get through it stronger than if let everyone who promises a "cure" convince us to take a frivolous (and expensive) detour. We can do this.
And on Wednesday, I get to explain to the specialist why I am firing him.
He is so thin. At age 6.5 years he can still wear a size 4 or 5 pants in the waist (certainly not in length). His appetite has been extremely poor most of the summer, with occasional episodes of rampant devouring of an evening meal and everything else within reach. Generally, he is unmotivated to eat.
Anxiety crept in and now overshadows many of the activities he used to enjoy. Ian finds it difficult to play alone with his toys, calling for us to come sit with him while he scans mounds of Legos for a particular piece. He rarely wants us to play with him, only to be with him. When I offer to call a friend for a play date, he declines.
At night, he calls us to his room 5 or 6 times because he is scared of monsters. Last night my dad exorcized them after both Steve and I failed to make him believe there weren't any there to begin with. Ian fell asleep shortly after that, so perhaps dad's seminary training has far reaching benefits he never expected. We'll see if Ian remembers tonight.
Ian's inability to pay attention, obsessive-compulsive behavior, violent outbursts, and rigid thinking seem to have worsened. All of these were supposed to be helped by the supplements he has been taking over the last 7 months. I am now almost certain that most of them have been a waste of time and money.
A few months ago I asked a trusted friend who I should believe when two physicians make conflicting recommendations. My friend advised me to follow the one who does not stand to gain financially by the diagnosis or recommended treatment. The more I think about it, the more it makes sense and the more I realize that I was blinded by a false sense of hope. Ian has been pumped full of pills in such an unscientific manner it's no wonder we don't know if anything is helping or hurting him.
So, I have made a decision. Today I am taking Ian off everything except Concerta (for ADHD), fish oil (for omega-3s), and magnesium citrate (for constipation). We will keep these three because I know they help him and/or are good for him. The remaining supplements (Pro-Bio Gold, 5-HTP, melatonin, taurine, and GABA) - 8 pills a day - will be put away until Steve and I can determine if there has been a change in his well-being. Ian has agreed that in place of his pills he gets to have a tablespoon of organic peanut butter with every meal. If that doesn't help him put on some weight, we'll try something else.
In addition to my wise friend's helpful suggestion, I consulted a number of websites. The most compelling one was www.autism-watch.org. My mind looks for scientific answers to my questions. When answers are not available, common sense is my guide. This website confirmed what my gut was already telling me - and my gut has never been wrong.
Maybe this means I have given up hope for a cure for Ian. I don't want to change his personality or the innate person that lies within. My hope is that he will one day be free of the fear and anxiety that torment him now so that he can be successful in and passionate about his interests and feel joy in his soul. These are skills to be acquired through education and life's experiences, not consumed in a pill.
Sure, we'll probably consider anti-depressants for him at some point because his journey is going to be extremely difficult. The whole family may well be on them before long. I truly believe, however, that if we use common sense, we'll all get through it stronger than if let everyone who promises a "cure" convince us to take a frivolous (and expensive) detour. We can do this.
And on Wednesday, I get to explain to the specialist why I am firing him.
Wednesday, July 05, 2006
The Jump Zone
The kids and I took a big chance today, and it paid off.
We went to one of those jumping places - you know, the warehouses with inflatable slides and obstacle courses that are all probably secretly owned by chiropractors. Every time we go to one of these bounce houses, I know I will get pulled into the fun, even if all I had planned to do was take pictures. That part I don't mind. Keeping up with both of them on my own in such a place makes me a little nervous.
My first experience with one was last December when my niece had her birthday party at one. I was recovering from pretty major surgery and wanted to sit on the sidelines. The laughter drew me in, and before I knew it I was jumping around like hot popcorn. Several kids tried to bounce me off an elevated mid-section of a circular racetrack. They succeeded not only in catapulting me off the thing, but in mid-air I did a back flip. It was like flying in slow-motion, and the whole time I was airborn, I thought "stitches, don't fail me now!"
Fortunately, today's was a little calmer experience. The bouncing always seems to put Ian in a groove that lasts all day. Man, can that kid climb. He would get to the top of a slide and wait for Ainsley and me so we could all go down together. They both took turns choosing our next adventure, and neither one complained.
Ainsley wandered off once - and I was terrified when I couldn't find her. After searching every inch of the place, I finally looked in the boys bathroom. There she was, staring at a urinal, trying desperately to figure out how to use it.
Ian has been extremly together the rest of the day. He has listened well, transitions have gone smoothly, he sang songs on our walk to the post office.
Lately, I have observed that physical exercise seems to be having a more positive effect on Ian than any of the supplements we've been giving him on the advice of our allergy/immunology specialist. I plan to spend some time over the next few days researching my theory that we may have taken a misguided path. Sigh. All in the name of hope.
We went to one of those jumping places - you know, the warehouses with inflatable slides and obstacle courses that are all probably secretly owned by chiropractors. Every time we go to one of these bounce houses, I know I will get pulled into the fun, even if all I had planned to do was take pictures. That part I don't mind. Keeping up with both of them on my own in such a place makes me a little nervous.
My first experience with one was last December when my niece had her birthday party at one. I was recovering from pretty major surgery and wanted to sit on the sidelines. The laughter drew me in, and before I knew it I was jumping around like hot popcorn. Several kids tried to bounce me off an elevated mid-section of a circular racetrack. They succeeded not only in catapulting me off the thing, but in mid-air I did a back flip. It was like flying in slow-motion, and the whole time I was airborn, I thought "stitches, don't fail me now!"
Fortunately, today's was a little calmer experience. The bouncing always seems to put Ian in a groove that lasts all day. Man, can that kid climb. He would get to the top of a slide and wait for Ainsley and me so we could all go down together. They both took turns choosing our next adventure, and neither one complained.
Ainsley wandered off once - and I was terrified when I couldn't find her. After searching every inch of the place, I finally looked in the boys bathroom. There she was, staring at a urinal, trying desperately to figure out how to use it.
Ian has been extremly together the rest of the day. He has listened well, transitions have gone smoothly, he sang songs on our walk to the post office.
Lately, I have observed that physical exercise seems to be having a more positive effect on Ian than any of the supplements we've been giving him on the advice of our allergy/immunology specialist. I plan to spend some time over the next few days researching my theory that we may have taken a misguided path. Sigh. All in the name of hope.
Tuesday, July 04, 2006
Happy Fourth
It's the 4th of July and our family is celebrating in a way that seems to work best for us...not doing anything out of the ordinary.
Huge gatherings of people, festivities with bright lights and banners, loud music, crashing noises, unfamiliar food - these spell disaster for my kids, especially for Ian. With all of the characteristics in one locale, it is certain to cause a major panic attack and/or meltdown.
The kids are really too young to be up late enough to enjoy the fireworks. Even if they could stay awake that late, the booming would scare them both. Perhaps next year we will watch them from a safe distance, say....3 or 4 miles?
Today we pretty much kept to our routine. The kids are currently beating their father on the Kung Fu mats in the living room. It has been raining off and on for the last couple of hours. Rain is enough novelty for one day. Both children were shocked to see water falling from the sky. I don't remember when we last saw that kind of moisture out of a shower.
No hot dogs or hamburgers for this group for dinner tonight. We're having fajitas made from the most delicious organically raised beef money can buy. I don't consider it a luxury to feed my family well, it is a necessity. This is food I know he will eat. And as a special treat, I made a white cake (with Rice Milk and apple sauce instead of the regular products Ian is allergic to) and put red, white and blue sprinkles on the top. Yee-haw!
Ian has just come into the room to inform me of the following:
Some days I just don't try to analyze it. I just laugh and move on. I think it is time to make tortillas...or take someone's temperature...or something.
Huge gatherings of people, festivities with bright lights and banners, loud music, crashing noises, unfamiliar food - these spell disaster for my kids, especially for Ian. With all of the characteristics in one locale, it is certain to cause a major panic attack and/or meltdown.
The kids are really too young to be up late enough to enjoy the fireworks. Even if they could stay awake that late, the booming would scare them both. Perhaps next year we will watch them from a safe distance, say....3 or 4 miles?
Today we pretty much kept to our routine. The kids are currently beating their father on the Kung Fu mats in the living room. It has been raining off and on for the last couple of hours. Rain is enough novelty for one day. Both children were shocked to see water falling from the sky. I don't remember when we last saw that kind of moisture out of a shower.
No hot dogs or hamburgers for this group for dinner tonight. We're having fajitas made from the most delicious organically raised beef money can buy. I don't consider it a luxury to feed my family well, it is a necessity. This is food I know he will eat. And as a special treat, I made a white cake (with Rice Milk and apple sauce instead of the regular products Ian is allergic to) and put red, white and blue sprinkles on the top. Yee-haw!
Ian has just come into the room to inform me of the following:
Mom, guess what! "Rectal" does not mean "butt". It means "not making everyone sick". And it was on my first thermometer when I was a baby.
Some days I just don't try to analyze it. I just laugh and move on. I think it is time to make tortillas...or take someone's temperature...or something.
Saturday, July 01, 2006
How Do You Know When...?
Q: Your family is swimming at the neighborhood pool. How do you know when your child has had enough and it is time to go home?
A: Your son says he is going to the bathroom and returns to the pool buck nekkid because he was too tired to put his swimsuit back on. When you ask where his swimsuit is, he says, "I don't know."
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