The night I told my son about his condition turned out to be one of the funniest exchanges we have ever had. Thank goodness, because it could have been a complete disaster. He was in a rotten mood and stormed out of the kitchen saying, "You're not going to be my mom any more." This has become his weapon to make me feel bad when I won't let him have his way. The rest of the conversation went something like this:
Me: Oh, yeah?
Ian: Yeah!
Me: Really? You think so?
Ian: Yeah!
Me: Well, I don't think so. Anyone who would go through the pain of having a tattoo of you put on her body gets to be your mother forever! So there!
Ian: Huh?
Me: Yes, that's right. My tattoo is of YOU!
Ian: It is? Cool! Let me see it again.
For the next few minutes I explained to Ian that for several years we knew there was something different about him, but we couldn't figure out what it was. We knew he was very smart, but he had a hard time understanding how to act around other people. Sometimes, he got overwhelmed by noises and lights and other things that didn't bother other people. He would get frustrated because he couldn't tell us how he felt.
Me: Then one day a doctor figured it out and told us you have Asperger's Syndrome.
Ian: Hamburgers and onions?
Me: (laughing) No, Asperger's Syndrome.
Ian: Asper...asper...asper...what?
Me: Asperger's Syndrome. It means you think and feel things differently from other people. It doesn't mean anything other than that. You are still the coolest kid I know.
Ian: Yeah, you're right. I am pretty cool.
And that was it.
Tuesday, May 30, 2006
Sunday, May 28, 2006
Somebody Rescue Me . . . Please!
We have decided to adopt a dog, a Boxer to be exact. So we are going through a Boxer rescue center, hoping to find the perfect match. There is a beautiful dog out there who needs a family, proper training, firm boundaries, and lots of love, and we believe our home is ready for one more wiggly member.
All of us are very excited. The anticipation sometimes makes the kids giddy. Steve and I remember fondly the nights when our last Boxer, Abby, would sleep between us on our bed with her head on a pillow. She would sigh deeply in her sleep, then suddenly blow Boxer snot all over us. Man, those were good times.
The search for the perfect dog is not unlike searching for a mate. Personalities must click, shared interests are important, even food preferences should be considered. After all, this new member of the family will be cleaning up our leftovers and stealing snacks from us when our heads are turned. He/she will be forced to listen to our music in the car - of late, the soundtrack to Madagascar and songs from Playhouse Disney are the preferred choices. These considerations must not be taken lightly, because they are for a lifetime, or about 8 human years.
A couple of years ago, as I emailed one of my roommates from college about our family situation, I was filled with self-pity, uncertainty, anguish, guilt, and a lot of anger. We were adjusting to the knowledge that our son had autism, and I was not handling it as well as I thought I should be. I was ticked at my husband for working so much and not being there to help me 24/7 (yes, I admit that Ian gets some of his irrational behavior from me). Even more, I was furious that I was unable to pick myself up and fix it. Just like that. Only a terrible parent would be so inept.
Although Sherri and I had not seen each other in years, she always has a nice way of helping me see things more clearly when what I really need is a kick in the rear. She replied to my pity-party by suggesting that perhaps God had chosen us to be Ian's parents because we were the only people capable of helping Ian reach his full potential.
Honestly, that thought had never occurred to me. But it sure was something to consider. Whether I wanted to accept a spiritual explanation or something more concrete didn't really matter. The fact remained that Ian was born to us, no one else. All of his wonderful qualities and his challenges were ours to help mold into a great human being. We could face it and help him succeed; or, we could ignore it and watch him crumble. THAT choice was ours. Our instincts would be our best ally.
I cried most of the day after I read Sherri's email. Her words gave me so much relief. They put me back in the driver's seat in a situation that made me feel like I had been wrapped in duct tape and shoved in the trunk. I was able to put my own feelings of inadequacy to rest and help this child who needed a strong and loving mother.
Would I have chosen Ian to be my child if I had known about his condition? Absolutely. I have been so deeply in love with him from the first second I saw him, touched his face to my cheek, felt his sleepy breath on my neck. I knew instinctively then that it was meant to be; nothing can change that.
I am told that furry pets can work wonders on the temperament of an autistic child. I hope when Ian snuggles with our new dog for the first time, he has the same feeling I do about him, that he sees the potential, senses the commitment, and understands the value of loving. There will always be imperfections in our personalities and our relationships, but what really matters is the connection we feel to those we call family.
All of us are very excited. The anticipation sometimes makes the kids giddy. Steve and I remember fondly the nights when our last Boxer, Abby, would sleep between us on our bed with her head on a pillow. She would sigh deeply in her sleep, then suddenly blow Boxer snot all over us. Man, those were good times.
The search for the perfect dog is not unlike searching for a mate. Personalities must click, shared interests are important, even food preferences should be considered. After all, this new member of the family will be cleaning up our leftovers and stealing snacks from us when our heads are turned. He/she will be forced to listen to our music in the car - of late, the soundtrack to Madagascar and songs from Playhouse Disney are the preferred choices. These considerations must not be taken lightly, because they are for a lifetime, or about 8 human years.
A couple of years ago, as I emailed one of my roommates from college about our family situation, I was filled with self-pity, uncertainty, anguish, guilt, and a lot of anger. We were adjusting to the knowledge that our son had autism, and I was not handling it as well as I thought I should be. I was ticked at my husband for working so much and not being there to help me 24/7 (yes, I admit that Ian gets some of his irrational behavior from me). Even more, I was furious that I was unable to pick myself up and fix it. Just like that. Only a terrible parent would be so inept.
Although Sherri and I had not seen each other in years, she always has a nice way of helping me see things more clearly when what I really need is a kick in the rear. She replied to my pity-party by suggesting that perhaps God had chosen us to be Ian's parents because we were the only people capable of helping Ian reach his full potential.
Honestly, that thought had never occurred to me. But it sure was something to consider. Whether I wanted to accept a spiritual explanation or something more concrete didn't really matter. The fact remained that Ian was born to us, no one else. All of his wonderful qualities and his challenges were ours to help mold into a great human being. We could face it and help him succeed; or, we could ignore it and watch him crumble. THAT choice was ours. Our instincts would be our best ally.
I cried most of the day after I read Sherri's email. Her words gave me so much relief. They put me back in the driver's seat in a situation that made me feel like I had been wrapped in duct tape and shoved in the trunk. I was able to put my own feelings of inadequacy to rest and help this child who needed a strong and loving mother.
Would I have chosen Ian to be my child if I had known about his condition? Absolutely. I have been so deeply in love with him from the first second I saw him, touched his face to my cheek, felt his sleepy breath on my neck. I knew instinctively then that it was meant to be; nothing can change that.
I am told that furry pets can work wonders on the temperament of an autistic child. I hope when Ian snuggles with our new dog for the first time, he has the same feeling I do about him, that he sees the potential, senses the commitment, and understands the value of loving. There will always be imperfections in our personalities and our relationships, but what really matters is the connection we feel to those we call family.
Midlife Irrationality
I like to think of myself as a relatively sane person with occasional, momentary lapses in rational thought. Those I blame on the pervasive lack of sleep that has become a normal part of life since I became a mother. When my children were babies it was understandable that I would be somewhat scatter-brained. No one can function normally on the constantly interrupted napping that we moms are forced to endure until our kids begin to sleep through the night. My son, my first-born, granted me the privilege of nighttime peace when he was 8 months old; my daughter, when she was 12 weeks old. That was 3 years ago. Unfortunately, my mind had been trained to awaken every 2 hours, and I am still doing it to this day.
Last night we forgot to turn on our daughter's monitor. At 3:00 a.m. she came into our room, carrying her favorite blanket, and sobbing. This was the first time she had ever managed the eighteen steps downstairs alone at night, and she was hysterical. She climbed into bed with us and snuggled close for comfort. For once, I didn't mind being kept awake by a little darling. It was nice to have her close to me.
Perhaps it is stress. Maybe anxiety. For a while it was hot flashes (thank goodness that phase didn't last long.) Lately, though, I have no explanation other than my role as mother dictates that I must be alert to my children's needs 24/7. It is impossible to forget that role, even as I sleep. Why doesn't the snoring man sleeping next to me have the same problem? Because he leaves the house every morning for a grown-up world, a day of enlightened problem solving, which he then leaves behind again when he steps off the train at 6 p.m. That alone justifies in my mind the right - no, the obligation - to kick him in the shin at least once a week and make him go check the child who is calling for a glass of water at 11:30 p.m. Why should I have all the fun?
When I really think about it, the most likely reason I can't sleep at night is a combination of all of these explanations plus one more: our family is surviving the turmoil caused by autism. I say "surviving" because that is exactly how I intend for others to see us, and it is what I expect of my family as we deal with each mini-crisis and go on.
So many people tell me I really handle it well, that I seem very together considering what I deal with every day. That is true in some respects. Kids like my son, who has Asperger's Syndrome, crave order and predictability. For the most part, I have always been fairly well organized. (It's confession time: I think in outlines - yes, Roman numerals and everything!) That's how I handle a crisis - I break it down into parts and organize the hell out of it. It's a characteristic of a good manager, and that is what I am.
On the other hand, so often I am seething on the inside, wondering if my son - or my daughter - is pushing my buttons with his tantrums or are there neurological/sensory reasons he becomes hysterical and cannot calm down. Then there is the extreme guilt which follows when I guess incorrectly and punish him for refusing to get ready for bed when he was actually freaked out by a faint whistling sound the air conditioner was making that none of the rest of us heard until later. It is mentally and physically exhausting.
The strange things is, I think he realizes that sometimes it is just too much for me. How? I have no clue. He has difficulty interpreting the tone of my voice, and I have to explain to him when his behavior is making me angry. Much later, when all has been forgotten, he will hug me and say, "Mom, I love you" for no apparent reason. Or he will giggle at something silly and simply melt my heart. I wish my mind could replay those moments every night, all night long, so I would be motivated to sleep for several hours in a row. It would be nice to be the last person to awaken some morning, feeling refreshed and ready for a great day. Some day, perhaps.
Last night we forgot to turn on our daughter's monitor. At 3:00 a.m. she came into our room, carrying her favorite blanket, and sobbing. This was the first time she had ever managed the eighteen steps downstairs alone at night, and she was hysterical. She climbed into bed with us and snuggled close for comfort. For once, I didn't mind being kept awake by a little darling. It was nice to have her close to me.
Perhaps it is stress. Maybe anxiety. For a while it was hot flashes (thank goodness that phase didn't last long.) Lately, though, I have no explanation other than my role as mother dictates that I must be alert to my children's needs 24/7. It is impossible to forget that role, even as I sleep. Why doesn't the snoring man sleeping next to me have the same problem? Because he leaves the house every morning for a grown-up world, a day of enlightened problem solving, which he then leaves behind again when he steps off the train at 6 p.m. That alone justifies in my mind the right - no, the obligation - to kick him in the shin at least once a week and make him go check the child who is calling for a glass of water at 11:30 p.m. Why should I have all the fun?
When I really think about it, the most likely reason I can't sleep at night is a combination of all of these explanations plus one more: our family is surviving the turmoil caused by autism. I say "surviving" because that is exactly how I intend for others to see us, and it is what I expect of my family as we deal with each mini-crisis and go on.
So many people tell me I really handle it well, that I seem very together considering what I deal with every day. That is true in some respects. Kids like my son, who has Asperger's Syndrome, crave order and predictability. For the most part, I have always been fairly well organized. (It's confession time: I think in outlines - yes, Roman numerals and everything!) That's how I handle a crisis - I break it down into parts and organize the hell out of it. It's a characteristic of a good manager, and that is what I am.
On the other hand, so often I am seething on the inside, wondering if my son - or my daughter - is pushing my buttons with his tantrums or are there neurological/sensory reasons he becomes hysterical and cannot calm down. Then there is the extreme guilt which follows when I guess incorrectly and punish him for refusing to get ready for bed when he was actually freaked out by a faint whistling sound the air conditioner was making that none of the rest of us heard until later. It is mentally and physically exhausting.
The strange things is, I think he realizes that sometimes it is just too much for me. How? I have no clue. He has difficulty interpreting the tone of my voice, and I have to explain to him when his behavior is making me angry. Much later, when all has been forgotten, he will hug me and say, "Mom, I love you" for no apparent reason. Or he will giggle at something silly and simply melt my heart. I wish my mind could replay those moments every night, all night long, so I would be motivated to sleep for several hours in a row. It would be nice to be the last person to awaken some morning, feeling refreshed and ready for a great day. Some day, perhaps.
Friday, May 26, 2006
Shopping for Understanding
Last year I adopted a new rule about shopping: When I find something that touches me so deeply it makes me cry right there in the store, I have to buy it without hesitation.
The day after Thanksgiving, a week after Ian turned six, I went shopping by myself. I had not been out on that craziest of shopping days since before parenthood, and I needed some alone time. Unfortunately, I wasn’t enjoying myself like I had hoped. I just couldn’t get into the holiday spirit.
After several hours of purchasing Christmas gifts, I went into a unique store that had decorative items for the home, nothing essential, all very frivolous and fun. At the back of the store was a display of small stone plaques with sweet sayings on them. One of them hit my heart like an arrow. “A mother understands what a child does not say.” As I read it, tears dripped off my cheeks and landed on the stone, turning it a shiny, dark, marbled mauve.
All these years, that is what I had been doing, trying desperately to read what my son wanted to say but was unable to put into words, helping him understand that my love for him was genuine, deep, and unconditional. He let me know a few weeks earlier that he had reached a good place inside, when he quietly hugged me and whispered in my ear, “Mom, I’m happy now.”
I keep that plaque in my bathroom next to the sink. It is the first thing I look at in the morning, and it reminds me to keep listening to my children, even when they are not talking, or when they are babbling incessantly but not making sense, because there is much more to them that words cannot express.
The day after Thanksgiving, a week after Ian turned six, I went shopping by myself. I had not been out on that craziest of shopping days since before parenthood, and I needed some alone time. Unfortunately, I wasn’t enjoying myself like I had hoped. I just couldn’t get into the holiday spirit.
After several hours of purchasing Christmas gifts, I went into a unique store that had decorative items for the home, nothing essential, all very frivolous and fun. At the back of the store was a display of small stone plaques with sweet sayings on them. One of them hit my heart like an arrow. “A mother understands what a child does not say.” As I read it, tears dripped off my cheeks and landed on the stone, turning it a shiny, dark, marbled mauve.
All these years, that is what I had been doing, trying desperately to read what my son wanted to say but was unable to put into words, helping him understand that my love for him was genuine, deep, and unconditional. He let me know a few weeks earlier that he had reached a good place inside, when he quietly hugged me and whispered in my ear, “Mom, I’m happy now.”
I keep that plaque in my bathroom next to the sink. It is the first thing I look at in the morning, and it reminds me to keep listening to my children, even when they are not talking, or when they are babbling incessantly but not making sense, because there is much more to them that words cannot express.
Thursday, May 25, 2006
A Kid With a Plan
Now that summer break has begun, I am able to look back over the school year and remember some of the great things that happened. I tend to forget the bad stuff.
My favorite part of Ian's kindergarten year was seeing how he and his teacher adored each other. They clicked from the moment they met.
Ian was fortunate to be the first student to choose a locker. He decided on number 21. I assumed he selected that one because it was on the end and would be easier to get his things. Not so. His teacher asked him why he wanted that particular location.
Ian's reply:
It's frightening.
My favorite part of Ian's kindergarten year was seeing how he and his teacher adored each other. They clicked from the moment they met.
Ian was fortunate to be the first student to choose a locker. He decided on number 21. I assumed he selected that one because it was on the end and would be easier to get his things. Not so. His teacher asked him why he wanted that particular location.
Ian's reply:
I picked locker number 21 because that's how old I'll be when I go to MIT.
It's frightening.
Tuesday, May 23, 2006
When should I start worrying?
The statistics scare me to death. Once you have a child on the autism spectrum there is a 50% chance that your other children will land there as well, and most likely will suffer more profound autistic traits. Depending on what you read, 1 in every 100 children are on the spectrum (or 1 in 1000, or 1 in 3 - pick which one you want). Boys used to outnumber girls 10-1, now it is 3-1 (again, depending on what you read).
When my daughter, Ainsley, was born, Ian had not yet been diagnosed with anything other than the profound ability to wear me out. On March 1, 2004 we learned officially that he has Asperger's Syndrome. Ainsley was 11 months old. Knowing that Ian was just two when his symptoms seemed to appear, I began watching Ainsley for any sign that she too might be entering that world I do not understand. We pounced on every delay and sought help immediately. Because of Ian's diagnosis, services were almost automatic for her. Her quick progress in walking and speech after she received help reassured me that the road might be easier for her.
Last month she turned 3, and I began to breath a little easier. Did she beat the odds? Now I am not so sure.
Lately, she has been repeating questions to me, over and over again within minutes of each other, sometimes seconds. Often it is the question that tugs at my heart: "Mamma, you're not going anywhere, are you?" Her plea to stay close to me. She asked me 8 times in less than 10 minutes while we were waiting to have her picture taken today. She asked 4 times before we left the house. Ian used to do the same thing, only his questions were usually different each day. He never seemed to worry that I would leave him.
Ainsley has also begun zoning into her own world. Like her brother, it is difficult to get her attention and pull her back. She talks to herself, reviewing stories she has heard.
Is her path running parallel to Ian's? I had so hoped she would not have to go through what he has endured. Am I strong enough to get through the autism jungle with two kids?
If nothing else, my children will keep me laughing, and that will help tremendously. Last night after Kung Fu, Ainsley went to the front of the classroom to get a hug from Ian's instructor. He adores her and always teaches her something new when she comes to see him. He was commenting on how smart Ainsley must be.
I added: Both of my kids are very smart, and Ian is my little genius.
Then he asked: Who, the one licking your elbow?
When my daughter, Ainsley, was born, Ian had not yet been diagnosed with anything other than the profound ability to wear me out. On March 1, 2004 we learned officially that he has Asperger's Syndrome. Ainsley was 11 months old. Knowing that Ian was just two when his symptoms seemed to appear, I began watching Ainsley for any sign that she too might be entering that world I do not understand. We pounced on every delay and sought help immediately. Because of Ian's diagnosis, services were almost automatic for her. Her quick progress in walking and speech after she received help reassured me that the road might be easier for her.
Last month she turned 3, and I began to breath a little easier. Did she beat the odds? Now I am not so sure.
Lately, she has been repeating questions to me, over and over again within minutes of each other, sometimes seconds. Often it is the question that tugs at my heart: "Mamma, you're not going anywhere, are you?" Her plea to stay close to me. She asked me 8 times in less than 10 minutes while we were waiting to have her picture taken today. She asked 4 times before we left the house. Ian used to do the same thing, only his questions were usually different each day. He never seemed to worry that I would leave him.
Ainsley has also begun zoning into her own world. Like her brother, it is difficult to get her attention and pull her back. She talks to herself, reviewing stories she has heard.
Is her path running parallel to Ian's? I had so hoped she would not have to go through what he has endured. Am I strong enough to get through the autism jungle with two kids?
If nothing else, my children will keep me laughing, and that will help tremendously. Last night after Kung Fu, Ainsley went to the front of the classroom to get a hug from Ian's instructor. He adores her and always teaches her something new when she comes to see him. He was commenting on how smart Ainsley must be.
I added: Both of my kids are very smart, and Ian is my little genius.
Then he asked: Who, the one licking your elbow?
Monday, May 22, 2006
Affirmation
Yesterday was what I would call a difficult day for Ian. He got to sleep late the night before and was punchy all morning. We took him to the pool after lunch because it was a beautiful, sunny, hot day, hoping the water would help him get centered. Instead, the large Sunday crowd and an altercation with another child over some swimming flippers sent him sprialing downward.
Ian could not accept reality. In his world, possession IS the law. If it's in his hands, or if he has ever held it in his hands for any length of time, it must belong to him. Unfortunately, the little girl who kindly let him try on her flippers did not agree. A struggle ensued, I intervened and gave the girl back her flippers, and Ian became consumed with rage. Naturally, these meltdowns always seem to happen in large crowds, rather than in the privacy of our own home.
He was too far gone by then, too overwhelmed by the crowd and all the injustice weighing on his little shoulders. I gave Steve the signal, he picked Ian up and carried him to the car, leaving me with Ainsley, the beach bag, 2 kick boards, 2 noodles, a completely inflated turtle boat and the crab counterpart, 4 pairs of sandals, and a snack cooler. And I had the easy load.
Back at home, Ian went to his room to rest. Steve told him to decide for himself if he wanted to turn the day around. After a half hour, Ian was ready to join us again. Given the right setting and encouragement, he can control his behavior. It was wonderful to see him pull himself together. Too bad it didn't happen at the pool.
As he does every night, Ian called me to his room about 10 minutes after lights-out. He always says he is thirsty, but this is just a ploy to get me upstairs so he can ask me to snuggle with him. This time, instead of getting the water for him, I walked with him to the bathroom and had him fill his cup. He said he is afraid to get up and do it himself. I relocated a night light from his bedroom to the bathroom so he could find his way during the night if he needed to. He liked that idea, but he will never do it. He will continue to call me over the monitor until he leaves home for college. Ah, well, 18 stairs up and back down times 3 round trips per night for the next 11 years is......433,620 steps. By then, my butt should look great!
When Ian returned to his bed, I cuddled next to him and we talked quietly.
Ian: Mom, sometimes my snuggle buddies [stuffed animals] make me scared at night.
Me: "Why is that?"
Ian: "I don't know."
Me: "Well, what makes you feel better?"
Ian: "You do, Mom. I love you."
Ian could not accept reality. In his world, possession IS the law. If it's in his hands, or if he has ever held it in his hands for any length of time, it must belong to him. Unfortunately, the little girl who kindly let him try on her flippers did not agree. A struggle ensued, I intervened and gave the girl back her flippers, and Ian became consumed with rage. Naturally, these meltdowns always seem to happen in large crowds, rather than in the privacy of our own home.
He was too far gone by then, too overwhelmed by the crowd and all the injustice weighing on his little shoulders. I gave Steve the signal, he picked Ian up and carried him to the car, leaving me with Ainsley, the beach bag, 2 kick boards, 2 noodles, a completely inflated turtle boat and the crab counterpart, 4 pairs of sandals, and a snack cooler. And I had the easy load.
Back at home, Ian went to his room to rest. Steve told him to decide for himself if he wanted to turn the day around. After a half hour, Ian was ready to join us again. Given the right setting and encouragement, he can control his behavior. It was wonderful to see him pull himself together. Too bad it didn't happen at the pool.
As he does every night, Ian called me to his room about 10 minutes after lights-out. He always says he is thirsty, but this is just a ploy to get me upstairs so he can ask me to snuggle with him. This time, instead of getting the water for him, I walked with him to the bathroom and had him fill his cup. He said he is afraid to get up and do it himself. I relocated a night light from his bedroom to the bathroom so he could find his way during the night if he needed to. He liked that idea, but he will never do it. He will continue to call me over the monitor until he leaves home for college. Ah, well, 18 stairs up and back down times 3 round trips per night for the next 11 years is......433,620 steps. By then, my butt should look great!
When Ian returned to his bed, I cuddled next to him and we talked quietly.
Ian: Mom, sometimes my snuggle buddies [stuffed animals] make me scared at night.
Me: "Why is that?"
Ian: "I don't know."
Me: "Well, what makes you feel better?"
Ian: "You do, Mom. I love you."
Saturday, May 20, 2006
Climbing the Rock Wall
My son was 2 years old when I left work to stay home with him. We had just moved to the east coast and were getting used to our new life. We had yet to discover any of Ian's issues. I decided to enroll him at Gymboree for socialization and exercise. The first time we tried it, he loved it. He was delighted by the music, the activities, the parachute play, and of course, the bubbles.
Very quickly after that first wonderful session, however, Ian began to pull away from the group. He would run wildly through the play area, refused to sit during circle time, was constantly cutting in line and being impolite to the other children. I was horrified! My son, who was so delightful and well-mannered at home, became Bart Simpson in this setting. It was embarrassing to see the other kids and moms play adorably in a circle while Ian played catch-me-if-you-can.
I tried to force him to participate appropriately, which resulted in tantrums. The teacher was so sweet. She suggested we just let him "do his own thing", and when he was ready he would participate. The elaborate weekly scenarios and constant game playing were difficult to keep up with. The class moved quickly and it was important to stay with the story or you would miss the next activity because they tended to build on one another. Ian was lost before the class ever began.
Finally, I stood back and watched him. Over several weeks I noticed a child who was not enjoying the playful atmosphere. He did not get the make believe activities. He seemed overwhelmed by the music, unable to follow simple instructions, incapable of connecting with other children. He got plenty of exercise, but not the type I was paying for. After a year of attempting to make it work, we finally withdrew from the class. He seemed relieved. I felt defeated.
Jump ahead to age 5. After our move to Texas I was told about a wonderful gymnastics program that offered a class for kids with special needs. I couldn't believe it - someone was actually willing to take on this terrific yet challenging group of kids so they could build their muscles and enjoy activities other kids were doing. It is called My Gym.
The first time we went, both of my children were welcomed into the group to play and support each other. Not only did they have a great time, but they both tried activities they had never done before. There was a good mix of children with different issues, several who seemed to be on the autism spectrum. All of them were treated respectfully and had their parents or a caregiver close by participating with them. There were 3 - yes, three!!! - amazing and loving teachers for the group, not one. Each of them understood the kids they were dealing with and made certain they had the opportunity to participate safely. It was like having professional physical therapy set to music. I could not believe what I was seeing.
That was last July. Now, ten months later, both of my children are climbing rock walls, hanging upside down, doing summer salts, and testing their sensory limits every Friday afternoon with kids they can relate to. Ian has made a good friend who plays very imaginative games with him during free play. The differences I see in my children today have come about because the instructors do not let the kids opt out of trying the planned activities. When it is circle time, everyone must sit in the circle - no wandering off to "do his own thing." They must participate and complete each part of the program, no matter how much help they need. No child is forced to do anything that terrifies him; but each is pushed to test his own limits and to feel great about even the littlest success. Giving up is not an option.
I have seen it not only in myself, but in other parents with children on the autism spectrum: allowing our children to back out of things and justifying it because of their condition. That course is set for failure. Autistic children strive to stay in their debilitating comfort zone. It is our job as parents to ruffle their feathers, get them to try activities which challenge those fears that keep them in their cocoons. No place has done that for Ian like My Gym. It is wonderful to have a giggly and actively focused little boy who finally enjoys group activities. That is quite an accomplishment.
Mr. Kyle and all the gang at My Gym - YOU ROCK!!!
Very quickly after that first wonderful session, however, Ian began to pull away from the group. He would run wildly through the play area, refused to sit during circle time, was constantly cutting in line and being impolite to the other children. I was horrified! My son, who was so delightful and well-mannered at home, became Bart Simpson in this setting. It was embarrassing to see the other kids and moms play adorably in a circle while Ian played catch-me-if-you-can.
I tried to force him to participate appropriately, which resulted in tantrums. The teacher was so sweet. She suggested we just let him "do his own thing", and when he was ready he would participate. The elaborate weekly scenarios and constant game playing were difficult to keep up with. The class moved quickly and it was important to stay with the story or you would miss the next activity because they tended to build on one another. Ian was lost before the class ever began.
Finally, I stood back and watched him. Over several weeks I noticed a child who was not enjoying the playful atmosphere. He did not get the make believe activities. He seemed overwhelmed by the music, unable to follow simple instructions, incapable of connecting with other children. He got plenty of exercise, but not the type I was paying for. After a year of attempting to make it work, we finally withdrew from the class. He seemed relieved. I felt defeated.
Jump ahead to age 5. After our move to Texas I was told about a wonderful gymnastics program that offered a class for kids with special needs. I couldn't believe it - someone was actually willing to take on this terrific yet challenging group of kids so they could build their muscles and enjoy activities other kids were doing. It is called My Gym.
The first time we went, both of my children were welcomed into the group to play and support each other. Not only did they have a great time, but they both tried activities they had never done before. There was a good mix of children with different issues, several who seemed to be on the autism spectrum. All of them were treated respectfully and had their parents or a caregiver close by participating with them. There were 3 - yes, three!!! - amazing and loving teachers for the group, not one. Each of them understood the kids they were dealing with and made certain they had the opportunity to participate safely. It was like having professional physical therapy set to music. I could not believe what I was seeing.
That was last July. Now, ten months later, both of my children are climbing rock walls, hanging upside down, doing summer salts, and testing their sensory limits every Friday afternoon with kids they can relate to. Ian has made a good friend who plays very imaginative games with him during free play. The differences I see in my children today have come about because the instructors do not let the kids opt out of trying the planned activities. When it is circle time, everyone must sit in the circle - no wandering off to "do his own thing." They must participate and complete each part of the program, no matter how much help they need. No child is forced to do anything that terrifies him; but each is pushed to test his own limits and to feel great about even the littlest success. Giving up is not an option.
I have seen it not only in myself, but in other parents with children on the autism spectrum: allowing our children to back out of things and justifying it because of their condition. That course is set for failure. Autistic children strive to stay in their debilitating comfort zone. It is our job as parents to ruffle their feathers, get them to try activities which challenge those fears that keep them in their cocoons. No place has done that for Ian like My Gym. It is wonderful to have a giggly and actively focused little boy who finally enjoys group activities. That is quite an accomplishment.
Mr. Kyle and all the gang at My Gym - YOU ROCK!!!
Wednesday, May 17, 2006
It Takes a Village
I am the keeper of the family schedule; the homework supervisor; the taxi driver; the laundress; the chef; the boo-boo healer; the housekeeper; the psychiatric and spiritual advisor; the mother; the wife; the tyrant who lays down the law; the director of finance; the glue that keeps the four of us together. Most of the time, wearing all of those hats is a challenge I welcome. Often, it takes every ounce of energy I have just to make it through until the sun goes down without collapsing.
All the mothers I know feel this way, some more than others. Over the last couple of years many have crossed my path who share a common bond, other than motherhood itself. We have children with Asperger'’s Syndrome. To say that this complex disorder makes life more difficult would be sugar-coating the description. It is like being in a war zone 24/7. In the beginning you never know when the bombs are going to hit. After you have been through several hundred battles, you can see the patterns, sense the changes that preface a rampage. Even then, it still tears at your stomach to watch your child disintegrate before your eyes into a violent beast that is so filled with confusion and disorder that he lashes out at you just because you are there.
I am more successfully known for my public speaking skills than for writing. Perhaps it is the way a group of people responds to the spoken word that makes it fun to disseminate information in that manner. For me, the bigger the crowd, the more I love the opportunity to speak because facial expressions tell me more than applause. Being able to read faces, emotions, thoughts, is intuitive for me.
The skill I relied upon professionally failed me with Ian once autism entered the picture. His affect was often blank, his voice indiscernible. I could not read him like I could strangers in a crowded room. How could I help him if I did not know what was going on in his head? He certainly was not volunteering any information. I found myself allowing him to slip away because I did not know what else to do. For the first few months after the diagnosis I was a zombie, trudging through each day, counting the hours until sleep would take reality away for a brief time.
I have found numerous resources to assist my son. Where I found a gap was in resources to help me deal with the tremendous sense of grief I felt because my child is not normal. Parents need support; but what I found at every support group meeting I attended was parents talking about their children's problems and focusing on the kids'’ issues. I cannot recall a time when someone addressed the needs of the parents. All the information about therapies, special diets, and education plans will not help the child if the parents are completely stressed out.
You may find my ideas more relevant to mothers. But dads should participate in the discussion here too so they can understand the unspoken pain their wives are facing. You probably feel it also, perhaps differently, but it is there and needs to be dealt with. Once you have pinpointed a diagnosis for your child, theoretically you have the ability to take the information and run with it, start improving your child's life. In reality, the diagnosis is just the beginning of another long journey, one that starts with the grieving process. When there is a death in the family, friends and relatives gather around to support each other through the difficult times. You need their support even more now, because your child'’s future depends largely on your ability to show him the way with love, kindness, and hope. That cannot occur if you keep the diagnosis a secret.
The title of a book by Former First Lady, Hillary Rodham Clinton, helped me realize this truth with all children, but especially so with mine: It takes a village to meet the needs of a child with ASD. If you are dealing with autism in your own family, I hope you find a village of support here.
link to Lisa Martin's Dallas Morning News article May 11, 2006
All the mothers I know feel this way, some more than others. Over the last couple of years many have crossed my path who share a common bond, other than motherhood itself. We have children with Asperger'’s Syndrome. To say that this complex disorder makes life more difficult would be sugar-coating the description. It is like being in a war zone 24/7. In the beginning you never know when the bombs are going to hit. After you have been through several hundred battles, you can see the patterns, sense the changes that preface a rampage. Even then, it still tears at your stomach to watch your child disintegrate before your eyes into a violent beast that is so filled with confusion and disorder that he lashes out at you just because you are there.
I am more successfully known for my public speaking skills than for writing. Perhaps it is the way a group of people responds to the spoken word that makes it fun to disseminate information in that manner. For me, the bigger the crowd, the more I love the opportunity to speak because facial expressions tell me more than applause. Being able to read faces, emotions, thoughts, is intuitive for me.
The skill I relied upon professionally failed me with Ian once autism entered the picture. His affect was often blank, his voice indiscernible. I could not read him like I could strangers in a crowded room. How could I help him if I did not know what was going on in his head? He certainly was not volunteering any information. I found myself allowing him to slip away because I did not know what else to do. For the first few months after the diagnosis I was a zombie, trudging through each day, counting the hours until sleep would take reality away for a brief time.
I have found numerous resources to assist my son. Where I found a gap was in resources to help me deal with the tremendous sense of grief I felt because my child is not normal. Parents need support; but what I found at every support group meeting I attended was parents talking about their children's problems and focusing on the kids'’ issues. I cannot recall a time when someone addressed the needs of the parents. All the information about therapies, special diets, and education plans will not help the child if the parents are completely stressed out.
You may find my ideas more relevant to mothers. But dads should participate in the discussion here too so they can understand the unspoken pain their wives are facing. You probably feel it also, perhaps differently, but it is there and needs to be dealt with. Once you have pinpointed a diagnosis for your child, theoretically you have the ability to take the information and run with it, start improving your child's life. In reality, the diagnosis is just the beginning of another long journey, one that starts with the grieving process. When there is a death in the family, friends and relatives gather around to support each other through the difficult times. You need their support even more now, because your child'’s future depends largely on your ability to show him the way with love, kindness, and hope. That cannot occur if you keep the diagnosis a secret.
The title of a book by Former First Lady, Hillary Rodham Clinton, helped me realize this truth with all children, but especially so with mine: It takes a village to meet the needs of a child with ASD. If you are dealing with autism in your own family, I hope you find a village of support here.
link to Lisa Martin's Dallas Morning News article May 11, 2006
Sunday, May 14, 2006
Happy Mother's Deja vu
Last year on Mother's Day, we had a lot going on. Our house was on the market as we prepared to move to Texas; my husband was in the middle of an enormous project that had him leaving for a cross-country flight; and the kids were anxious because of all the changes. Ian had not eaten well since the previous August when we put him on medication for ADHD and was so thin it made my heart break. I decided that as a good mother, I owed him the opportunity to regain his appetite and put on a few healthy pounds.
It was that day I decided to give him a medication vacation just to see what would happen. Fortunately, I approached the experiment with a sense of humor and expected the worst. Throughout the day, Ian bounced off every wall in the house, expending energy I didn't know could exist in such a small body. Surely at some point he would be famished and want to stop for some mac-n-cheese, spaghetti o's or a peanut butter and fluff sandwich. No such luck. He spent most of the day talking endlessly, running aimlessly, and giggling at jokes in his head. He was an exhausted mess by the time he took his bedtime bath, and he was certainly no heavier than he was that morning. I put him to bed and decided to abandon the plan for his sake.
The next morning I gave him his usual dose of medicine and waited the customary half-hour for it to kick in. We sat in his room and chatted. I asked, "Ian do you feel any better today?"
"Yes," Ian replied calmly.
"How do you feel better?" I inquired.
"Everything is quiet today. Yesterday I felt awful" Ian said.
"Hmmm. Do you remember that you didn't take your medicine yesterday?"
"Uh huh."
"Are you saying you prefer the way you feel today?"
"Mom, I don't want to not take my medicine ever again." Point well taken, duly noted, and will adhere to forever - I promised. For a 5 year-old to be able to articulate such a strong desire to feel in control, I had to respect his wishes.
It is one year later - Mother's Day 2006 - and the wild boy awoke at 7:45 in a great mood but in his usual untamed premedication frenzy. We were spending the weekend with my parents, and I guided him to the kitchen to present him with his Concerta and first dose of supplements. This kid is so good about taking medicine. He can take 4 capsules at once with the tiniest sip of water. The problem that morning was I am not certain all of the pills made it into his mouth. None were on the floor around him or on the counter nearby; still, I had this nagging feeling one of them had escaped.
The morning continued with the Sunday newspaper rituals of our house - I read the sale ads, Ian read the comics, my parents and husband worked the crossword puzzle. Ian just couldn't sit still though. He figited, made animal sounds, ran from room to room, and refused to eat. The Concerta just never kicked in. Everyone noticed that he was not himself.
My husband and I exchanged knowing glances. It was probably the beginning of the meltdown. Ian has one every time we travel, but it usually hits right after we return home. After spending a couple of days out of his routine and putting 150% of his energy into meeting social behavior expectations, he just collapses into tears, sometimes becoming violent. Our extended family has always commented on how well behaves he is when he visits; but they had never seen one of these episodes...until now.
Fortunately, Steve and I have learned to tag team him. We remove him to a quiet room, and take turns with him, making sure he doesn't hurt himself. He usually tells us how much he hates us and wants us to go away. Then we leave him alone for a while. Eventually, I hear him crying softly, and that is when I know it is over. This time he had decided he was hungry for pancakes and bacon - good thing, too, because that is what I had fixed. He ate, and everything was fine...
...until we were halfway home. It started all over again, only this time he was kicking his window and attempting to take off his seatbelt while I drove 70mph (o.k., maybe it was 80 - I was distracted) down the highway. I pulled the van over, and my husband went to the back seat to straighten things out - literally. We told Ian he could have his meltdown, but he had to do it within the confines of his seatbelt. It's a completely laughable prospect, especially for a kid with ADHD whose medicine most likely had rolled under grandma's refrigerator that morning. As we hit the road again, he continued muttering something under his breath and turned as best he could so his back was to us. After a short time Ian saw a book in the pocket of the seat in front of him, took it out, and began to read. Soon he was calm again and ready to carry on with the day.
Even the worst days seem to end with a calm sigh. I crept upstairs to kiss Ian good night one last time, touched is soft hair, felt his sweet breath on my cheek, and watched him sleep silently. I wondered if somebody had stolen the molten child from a couple of hours before and replaced him with this peaceful one just so I would be willing to get up in the morning and try again.
I have decided that Mother's Day is not about cards and gifts or about my family telling me how much they love me. It is a day for me to reflect on how fortunate I am to have been chosen for the adventure of parenthood and all that it has to teach me. Next year, however, I think I'll stay home.
It was that day I decided to give him a medication vacation just to see what would happen. Fortunately, I approached the experiment with a sense of humor and expected the worst. Throughout the day, Ian bounced off every wall in the house, expending energy I didn't know could exist in such a small body. Surely at some point he would be famished and want to stop for some mac-n-cheese, spaghetti o's or a peanut butter and fluff sandwich. No such luck. He spent most of the day talking endlessly, running aimlessly, and giggling at jokes in his head. He was an exhausted mess by the time he took his bedtime bath, and he was certainly no heavier than he was that morning. I put him to bed and decided to abandon the plan for his sake.
The next morning I gave him his usual dose of medicine and waited the customary half-hour for it to kick in. We sat in his room and chatted. I asked, "Ian do you feel any better today?"
"Yes," Ian replied calmly.
"How do you feel better?" I inquired.
"Everything is quiet today. Yesterday I felt awful" Ian said.
"Hmmm. Do you remember that you didn't take your medicine yesterday?"
"Uh huh."
"Are you saying you prefer the way you feel today?"
"Mom, I don't want to not take my medicine ever again." Point well taken, duly noted, and will adhere to forever - I promised. For a 5 year-old to be able to articulate such a strong desire to feel in control, I had to respect his wishes.
It is one year later - Mother's Day 2006 - and the wild boy awoke at 7:45 in a great mood but in his usual untamed premedication frenzy. We were spending the weekend with my parents, and I guided him to the kitchen to present him with his Concerta and first dose of supplements. This kid is so good about taking medicine. He can take 4 capsules at once with the tiniest sip of water. The problem that morning was I am not certain all of the pills made it into his mouth. None were on the floor around him or on the counter nearby; still, I had this nagging feeling one of them had escaped.
The morning continued with the Sunday newspaper rituals of our house - I read the sale ads, Ian read the comics, my parents and husband worked the crossword puzzle. Ian just couldn't sit still though. He figited, made animal sounds, ran from room to room, and refused to eat. The Concerta just never kicked in. Everyone noticed that he was not himself.
My husband and I exchanged knowing glances. It was probably the beginning of the meltdown. Ian has one every time we travel, but it usually hits right after we return home. After spending a couple of days out of his routine and putting 150% of his energy into meeting social behavior expectations, he just collapses into tears, sometimes becoming violent. Our extended family has always commented on how well behaves he is when he visits; but they had never seen one of these episodes...until now.
Fortunately, Steve and I have learned to tag team him. We remove him to a quiet room, and take turns with him, making sure he doesn't hurt himself. He usually tells us how much he hates us and wants us to go away. Then we leave him alone for a while. Eventually, I hear him crying softly, and that is when I know it is over. This time he had decided he was hungry for pancakes and bacon - good thing, too, because that is what I had fixed. He ate, and everything was fine...
...until we were halfway home. It started all over again, only this time he was kicking his window and attempting to take off his seatbelt while I drove 70mph (o.k., maybe it was 80 - I was distracted) down the highway. I pulled the van over, and my husband went to the back seat to straighten things out - literally. We told Ian he could have his meltdown, but he had to do it within the confines of his seatbelt. It's a completely laughable prospect, especially for a kid with ADHD whose medicine most likely had rolled under grandma's refrigerator that morning. As we hit the road again, he continued muttering something under his breath and turned as best he could so his back was to us. After a short time Ian saw a book in the pocket of the seat in front of him, took it out, and began to read. Soon he was calm again and ready to carry on with the day.
Even the worst days seem to end with a calm sigh. I crept upstairs to kiss Ian good night one last time, touched is soft hair, felt his sweet breath on my cheek, and watched him sleep silently. I wondered if somebody had stolen the molten child from a couple of hours before and replaced him with this peaceful one just so I would be willing to get up in the morning and try again.
I have decided that Mother's Day is not about cards and gifts or about my family telling me how much they love me. It is a day for me to reflect on how fortunate I am to have been chosen for the adventure of parenthood and all that it has to teach me. Next year, however, I think I'll stay home.
Thursday, May 11, 2006
Welcome to My World
"Welcome to my world!" My husband hates it when I say that, because it typically follows some daunting experience that completely wipes him out, usually having to do with the kids. The look on his face is always the same - utter disbelief that I deal with such circumstances every day and don't end up in a straight jacket by noon. This is not to imply that I don't feel like I belong in the loony bin. I often find myself wanting to run away from home. Then one of the kids does something so sweet and kind that I can't imagine being anywhere else.
My family has been trying to convince me to write about my experiences for quite some time. The day-to-day routine in our house isn't that different from anyone else's. In fact, it is becoming more common place for families to face the same challenges we encounter. We are a family dealing with autism. Most people who see us in public have no idea our 6 year-old son has Asperger's Syndrome. Until last night, he didn't know he had it either; but that adventure of explaining it to him is a topic for another time.
The last 6 years have been a struggle for us. Parenthood was not what we thought it would be, our first child had problems we did not know how to describe to our pediatrician, we relocated half-way across the country twice, had a second child, and tried to make it all work in the midst of the chaos that is autism. I am glad to say that we are doing pretty well now, and I want to share what I have learned with others who are new to this puzzle.
I started writing a book about it. That became overwhelming as I tried in vain to organize my thoughts in a way that would be meaningful. As the product of a generation that thrives on immediate results, I was unwilling to wait to have my work edited and then published a year or two from now - or, rejected by the professional book sellers altogether. The need to do something now compels me to put my thoughts out there and let you tell me directly if they help.
In college I focused for a while on philosophy and ever since have been a big believer in karma. My version of it is this: do good so that others will benefit; the joy you receive in helping someone else is the interest you earn on your investment in the world around you. So many people along this journey have helped to strengthen my son and make our family whole. I want to do the same for other people in my situation, even if I can't reach them directly. This blog seems to be the best way to do that for now. Welcome to my world.
My family has been trying to convince me to write about my experiences for quite some time. The day-to-day routine in our house isn't that different from anyone else's. In fact, it is becoming more common place for families to face the same challenges we encounter. We are a family dealing with autism. Most people who see us in public have no idea our 6 year-old son has Asperger's Syndrome. Until last night, he didn't know he had it either; but that adventure of explaining it to him is a topic for another time.
The last 6 years have been a struggle for us. Parenthood was not what we thought it would be, our first child had problems we did not know how to describe to our pediatrician, we relocated half-way across the country twice, had a second child, and tried to make it all work in the midst of the chaos that is autism. I am glad to say that we are doing pretty well now, and I want to share what I have learned with others who are new to this puzzle.
I started writing a book about it. That became overwhelming as I tried in vain to organize my thoughts in a way that would be meaningful. As the product of a generation that thrives on immediate results, I was unwilling to wait to have my work edited and then published a year or two from now - or, rejected by the professional book sellers altogether. The need to do something now compels me to put my thoughts out there and let you tell me directly if they help.
In college I focused for a while on philosophy and ever since have been a big believer in karma. My version of it is this: do good so that others will benefit; the joy you receive in helping someone else is the interest you earn on your investment in the world around you. So many people along this journey have helped to strengthen my son and make our family whole. I want to do the same for other people in my situation, even if I can't reach them directly. This blog seems to be the best way to do that for now. Welcome to my world.
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