Thursday, August 2, 2012
Raising the White Flag
I love writing about Ben, and about our experiences with him. I love the funny things he says and does, like when he told me that he had two nightmares that were the same, except "the graphics were different" in the second version. I love that he always asks, "How much did that cost?" when someone shows him something new. I love his fascination for the mechanics of things, and his unabashed conversations, such as the one he had with my sister a year or so ago when shortly after I had a hysterectomy, he spontaneously asked her, "So Auntie Jen, have you also had your uterus removed?"
And yet, no matter how much I love him, there are times (today is one) when I want to hoist a white flag over my head, drag myself up and over the hilly battlefield upon which the ceaseless scuffles of Autism are fought every day, and collapse at the feet of whoever might actually have the power to accept my unconditional surrender and plea for mercy.
There are times (today is one) where I just don't think I can do this anymore. Lately I've been envying parents who never wake up in the morning wondering how many times their child will melt into uncontrollable fits of screaming, kicking, punching, and spitting. They never have to decide when might be the appropriate time to sit down with the cub scout troop and explain that their fellow Wolf isn't just a weird, impatient, socially awkward person but that he has a disability. There are parents who don't think twice about loading the kids into the car for an outing to a park, store, or restaurant.
There are times (today is one) where I wonder if I am really just not doing this parenting thing right at all. Those same parents who don't think twice about taking their kids to church or swimming lessons are also generally respected as the final authority in the home. Sure, other kids backtalk and argue; of course other kids fight with each other and even with their parents. But most of those kids don't leave bruises and bite marks. I've tried every trick in the book: consequences, punishments, rewards, sticker charts, money in the jar, and outright begging for better behavior. Nothing works...nothing. When Ben gets upset, nothing matters. He just explodes. And I can either put him in his room and hope he doesn't punch too many holes in walls or kick out the window, or I can try to physically hold onto him and brace myself for the fury.
Those meltdowns are unbearable, largely because they are completely void of all reason and logic. I can't talk Ben off the ledge, so to speak, while he's in the first phases of the meltdown. All I can do is wait until finally, in spite of the ongoing punches and kicks, the bites and screams and spit, I see the look in Ben's eyes change from fury to terror. There always comes a point where he realizes that he is out of control but just can't stop. And when that moment comes (and sometimes it takes hours to get there), I can finally scoop him into my arms and start rocking him and whispering while the punches get softer and softer and finally subside altogether and the Ben I adore comes back to me.
But he's nine years old now. And this has been the worst summer of meltdowns he's ever had. He's bigger and stronger than ever, and there are times (today is one) when I wonder what the future holds for this child. Will he ever gain more appropriate coping skills? Will he ever have the ability to move away to college or to a job? Will he be able to continue living in the house if he doesn't learn to somehow mitigate those outbursts so that they aren't scary and harmful to people around him?
I'm driving myself crazy with the questions, and with the lack of answers.
And today, bruised and exhausted, I surrender.
Monday, May 21, 2012
On Friendship
Throughout his life, when asked, Ben has always said that he has friends. But that is only because he doesn't really understand the difference between knowing people, and being friends with people. I think he has always assumed that if he knows someone's name, that means he is friends with that person. However, he has never been invited to another child's house to play, never been invited to a birthday party, and never had any interest in inviting anyone over to our house for a play date, either. In fact, he has always been quite content to play alone in his room or at the computer (except for the occasional joint activity with a sibling, and only if the sibling is doing something that Ben really wants to do).
But suddenly, something has changed. Ben got into the car last week after school and as we were driving home he said, "Mom, me and Ozzie kind of made a deal that I can go to his house to play at 3:30." Not sure I had heard him correctly, I repeated what he had said and then asked, "Did Ozzie ask his mom or dad if it's OK for you to come over and play?" The answer was no, so I explained that usually moms and dads must be consulted before arranging a play date. Ben responded, "Oh," and then didn't say another word on the rest of the drive home.
Clutching hopefully at this opportunity, though, when we got home I told Ben he should call Ozzie and have him check with his parents about playing together. I coached Ben as to what he should say when someone answered the phone, then dialed the number, handed him the phone, and held my breath. In a matter of seconds I could hear Ozzie's dad pick up on the other end of the line. Ben asked if Ozzie was home, to which his dad responded that he was not. Ben said, "Oh." And nothing more. After all, this wasn't the script we had rehearsed. Just when I was sure that the conversation would end rather abruptly, Ozzie's dad took the lead, told Ben that Ozzie would be home at 4:30, and then instructed him to come over at that time. Ben said OK, hung up the phone, and ran downstairs to play on the computer while the enormity of what had just happened washed over me. Ben was going to play with a friend!
Then the questions started: Should I call the dad back and let him know that Ben has autism? Does he already know? Will Ben know how to play with another child appropriately? What happens if Ben gets upset? What if Ben has a meltdown there at the friend's house?
In the end, I decided to not make too big a deal out of the play date. I drove Ben to Ozzie's house, told him I'd be back in about an hour, and then encouraged him to get out of the car and go ring the doorbell. Ben hesitated for only a second, and then as he emerged from the car, Ozzie opened the front door and Ben ran inside. As the door closed behind the two boys I looked over at my daughter, who had come along just to witness the miracle with me, and she said with a mix of amazement and reverence, "Ben is playing at a friend's house!"
The play date went just fine: no meltdowns, and Ben said he had a good time. The next day, Ben got into the car and said, "Ozzie wants me to come over and play again, but I really don't feel like it." I was disappointed and feared that the "friend" phase had ended as quickly as it had begun. But there have been two additional play dates since that time--another at Ozzie's house that migrated to our house before the evening was over, and today, a third encounter.
I can't help but wonder: What does the future hold for my little boy? Will he continue to be friends with Ozzie? Will he develop other friendships that are mutually satisfying for both Ben and his friends? Last week, my daughter Izzy told me that a boy at her junior high school--a boy with autism--had invited several people to his birthday party. On the appointed night, no one showed up and the boy and his mom ate the cake together, alone. My heart broke for that family.
But then my daughter told me that because they all felt so bad about what happened, they had planned a big surprise party at the park for the boy, wherein a couple dozen kids from the junior high met at the park and then began singing "Happy Birthday" as loudly as they could when the boy arrived and got out of his car. Izzy reported that he had an enormous smile on his face as he ran across the field toward the singing teens, excited to be remembered and included. I can just picture it, and I swell with emotion at the image.
Will Ben have true friends as he gets older--the kind that show up for parties and invite Ben to be a part of their activities? And if not, will he have peers who support him and love him enough to reach out to him when he is disappointed and alone? I'm so proud of my daughter and of her friends who went out of their way to embrace their classmate. I think there is a special place in heaven for kids like that. And, as the mother of a child who might be alone someday, there is a tender place in my heart for those kids, too.
But suddenly, something has changed. Ben got into the car last week after school and as we were driving home he said, "Mom, me and Ozzie kind of made a deal that I can go to his house to play at 3:30." Not sure I had heard him correctly, I repeated what he had said and then asked, "Did Ozzie ask his mom or dad if it's OK for you to come over and play?" The answer was no, so I explained that usually moms and dads must be consulted before arranging a play date. Ben responded, "Oh," and then didn't say another word on the rest of the drive home.
Clutching hopefully at this opportunity, though, when we got home I told Ben he should call Ozzie and have him check with his parents about playing together. I coached Ben as to what he should say when someone answered the phone, then dialed the number, handed him the phone, and held my breath. In a matter of seconds I could hear Ozzie's dad pick up on the other end of the line. Ben asked if Ozzie was home, to which his dad responded that he was not. Ben said, "Oh." And nothing more. After all, this wasn't the script we had rehearsed. Just when I was sure that the conversation would end rather abruptly, Ozzie's dad took the lead, told Ben that Ozzie would be home at 4:30, and then instructed him to come over at that time. Ben said OK, hung up the phone, and ran downstairs to play on the computer while the enormity of what had just happened washed over me. Ben was going to play with a friend!
Then the questions started: Should I call the dad back and let him know that Ben has autism? Does he already know? Will Ben know how to play with another child appropriately? What happens if Ben gets upset? What if Ben has a meltdown there at the friend's house?
In the end, I decided to not make too big a deal out of the play date. I drove Ben to Ozzie's house, told him I'd be back in about an hour, and then encouraged him to get out of the car and go ring the doorbell. Ben hesitated for only a second, and then as he emerged from the car, Ozzie opened the front door and Ben ran inside. As the door closed behind the two boys I looked over at my daughter, who had come along just to witness the miracle with me, and she said with a mix of amazement and reverence, "Ben is playing at a friend's house!"
The play date went just fine: no meltdowns, and Ben said he had a good time. The next day, Ben got into the car and said, "Ozzie wants me to come over and play again, but I really don't feel like it." I was disappointed and feared that the "friend" phase had ended as quickly as it had begun. But there have been two additional play dates since that time--another at Ozzie's house that migrated to our house before the evening was over, and today, a third encounter.
I can't help but wonder: What does the future hold for my little boy? Will he continue to be friends with Ozzie? Will he develop other friendships that are mutually satisfying for both Ben and his friends? Last week, my daughter Izzy told me that a boy at her junior high school--a boy with autism--had invited several people to his birthday party. On the appointed night, no one showed up and the boy and his mom ate the cake together, alone. My heart broke for that family.
But then my daughter told me that because they all felt so bad about what happened, they had planned a big surprise party at the park for the boy, wherein a couple dozen kids from the junior high met at the park and then began singing "Happy Birthday" as loudly as they could when the boy arrived and got out of his car. Izzy reported that he had an enormous smile on his face as he ran across the field toward the singing teens, excited to be remembered and included. I can just picture it, and I swell with emotion at the image.
Will Ben have true friends as he gets older--the kind that show up for parties and invite Ben to be a part of their activities? And if not, will he have peers who support him and love him enough to reach out to him when he is disappointed and alone? I'm so proud of my daughter and of her friends who went out of their way to embrace their classmate. I think there is a special place in heaven for kids like that. And, as the mother of a child who might be alone someday, there is a tender place in my heart for those kids, too.
Saturday, February 18, 2012
What If...and What Is
We've been giving a lot of thought lately to Ben's future. I don't mean the long-term dreams of most parents for their kids, such as dating, driving, college, and marriage; what is on our minds is elementary school, and then junior high, and Ben's ability to successfully navigate both. He is still doing well in a mainstream 3rd grade classroom, except for a few issues with spelling and handwriting, but as classes get harder and expectations get higher, we are trying to plan ahead to accommodate his needs.
Plan two was to get a solid battery of testing done that would give us a clear picture of Ben's intellectual, academic, social, and behavioral functioning. The intellectual/academic testing was very interesting. We discovered that Ben has a very high IQ, but also discovered that when it comes to academic performance, he performs anywhere from the nearly 100th percentile (that was in a task called "story recall" where he was told a series of short stories and then asked to repeat them back immediately, and then a couple hours later. Ben repeated them nearly verbatim two hours later exactly like they had been told to him originally. Very interesting stuff!), all the way down to the 1st percentile in handwriting (what he produces looks much like what appears on the inside walls of my purse when I leave the cap off a pen), and scores on various other tasks, everywhere in between. His spelling abilities were almost as poor as his handwriting. In the end he was diagnosed with a disability of written expression, and a mathematics disability (this one surprised me because he is still doing pretty well at math in school--at grade level, at least).
Then we managed to get into the Autism testing program at Brigham Young University. This was a huge deal, as the waiting list there is about a year long (we were fortunate that my husband in his profession as a psychologist was able to rely on some connections to move Ben up the list). The BYU testing was designed to see if and to what degree Ben met the criteria for a diagnosis of Autistic Disorder (as opposed to other similar disorders, such as 'PDD' [Pervasive Developmental Disorder] or Asperger's Disorder). A couple years ago Ben was diagnosed with Autistic Disorder by a child psychiatrist after just a relatively short interview. We've been using that diagnosis ever since, but now it was time to get serious. The BYU testing first involved a 3-hour interview with me, Chris, and the psychologist who asked us every possible thing there was to say about Ben's development and behavior. It was exhausting. We then took home and filled out a number of questionnaires and gave a couple to his school teacher to fill out as well. Then I brought Ben over to BYU where he was administered a test called the "ADOS"--the "gold standard" when it comes to determining whether or not a child has autism.
I stayed in the room while Ben was tested, and my heart nearly broke. For about 1/2 hour, the psychologist tried everything he could to get Ben to show some interest in what he (the psychologist) was talking about. For example, he asked Ben if he had any pets, and when Ben replied that we have a dog, the psychologist said, "Oh, I had a dog when I was little. He was black and white, but then one day he got lost..." The idea was that Ben might then respond with something like, "What was your dog's name?" or, "Did you find him when he got lost?" But Ben just sat at the table, rubbing his head and clearing his throat (a tic he has when he gets overwhelmed), and eventually he muttered, "Oh." When the psychologist gave him a pegboard with little cubes to fit over the pegs and instructed him to cover the whole board with the cubes (he only gave Ben enough to cover about half the board), Ben didn't ask for more pieces--he just rubbed his head and cleared his throat and waited until the psychologist finally offered to give him more pieces, to which Ben replied, "I guess." The test can take up to an hour, but Ben was done in less than half that because he just had no interest.
And then the waiting began. And I started to worry: What if Ben is diagnosed with Autism? And, what if he isn't? These were hard questions to wrestle with. On the one hand, if BYU diagnosed autism, then it was so...final. I mean, for a couple years we've believed that Ben has autism because the child psychiatrist said so after his brief interview, but that wasn't the result of any in-depth testing. There was always the thought in the back of our minds that maybe he was wrong; maybe we didn't have an autistic child after all...and there was some small hope in that possibility. On the other hand, what if BYU came back and said that everything we've believed about Ben was wrong, and that he isn't autistic after all? What happens to the IEP at school, and the services that our insurance pays for with an autism diagnosis? What if the problem is just that Ben is a hard kid, and we're not very good parents? The diagnosis of autism has given us an explanation for our son's challenges that we have clung to--without it, we'd be lost. I truly didn't know which result I wanted, and I nearly drove myself crazy thinking about it for one eternally long week.
Finally yesterday I sat down with the psychologist who had scored all the testing, and the results are in: Ben is a moderately functioning autistic child (I actually thought he was higher-functioning than the test results showed) who, because of his very high intellectual capacity, has great potential to get through school and...who knows from there. Will he ever be in a relationship? It's doubtful, because his interest in social interactions is very, very limited and he struggles a great deal to show empathy or emotional connection. Will he go to college? Perhaps, if we can accommodate his struggles with writing and communication.
But the psychologist said that we should live in a place of hopefulness. Ben has some strengths that many other children don't. He's smart, he's verbal, and he's just a dang cute kid (OK, I added the last one myself)! We move forward from here. The truth is, the world of "What If's..." is hostile and frightening. The world of "What Is" is something we can handle. And it's good to know what is.
Plan one was some therapeutic horseback riding lessons. He's been going to a place called "Courage Reins" for about three months now, and the program is impressive. With the help of volunteers (Ben's big sister Izzy is a volunteer) and staff who have training in working with special needs kids, Ben grooms his horse every week (brushes his horse down and picks the hooves), saddles him, and then leads him into the arena to ride. In the process he is learning how to follow instructions, develop gross and fine motor skills, build core body strength, and gain confidence. I'm including some pictures on this blog that I took during a lesson.
One day the teacher asked the kids to let go of the reins and stand in their stirrups while the "lead walkers" led the horses around the arena. She asked the kids if this was hard, and Ben called back, "It's a little bit scary AND a little bit fun!" That sounds about right.
Plan two was to get a solid battery of testing done that would give us a clear picture of Ben's intellectual, academic, social, and behavioral functioning. The intellectual/academic testing was very interesting. We discovered that Ben has a very high IQ, but also discovered that when it comes to academic performance, he performs anywhere from the nearly 100th percentile (that was in a task called "story recall" where he was told a series of short stories and then asked to repeat them back immediately, and then a couple hours later. Ben repeated them nearly verbatim two hours later exactly like they had been told to him originally. Very interesting stuff!), all the way down to the 1st percentile in handwriting (what he produces looks much like what appears on the inside walls of my purse when I leave the cap off a pen), and scores on various other tasks, everywhere in between. His spelling abilities were almost as poor as his handwriting. In the end he was diagnosed with a disability of written expression, and a mathematics disability (this one surprised me because he is still doing pretty well at math in school--at grade level, at least).
Then we managed to get into the Autism testing program at Brigham Young University. This was a huge deal, as the waiting list there is about a year long (we were fortunate that my husband in his profession as a psychologist was able to rely on some connections to move Ben up the list). The BYU testing was designed to see if and to what degree Ben met the criteria for a diagnosis of Autistic Disorder (as opposed to other similar disorders, such as 'PDD' [Pervasive Developmental Disorder] or Asperger's Disorder). A couple years ago Ben was diagnosed with Autistic Disorder by a child psychiatrist after just a relatively short interview. We've been using that diagnosis ever since, but now it was time to get serious. The BYU testing first involved a 3-hour interview with me, Chris, and the psychologist who asked us every possible thing there was to say about Ben's development and behavior. It was exhausting. We then took home and filled out a number of questionnaires and gave a couple to his school teacher to fill out as well. Then I brought Ben over to BYU where he was administered a test called the "ADOS"--the "gold standard" when it comes to determining whether or not a child has autism.
I stayed in the room while Ben was tested, and my heart nearly broke. For about 1/2 hour, the psychologist tried everything he could to get Ben to show some interest in what he (the psychologist) was talking about. For example, he asked Ben if he had any pets, and when Ben replied that we have a dog, the psychologist said, "Oh, I had a dog when I was little. He was black and white, but then one day he got lost..." The idea was that Ben might then respond with something like, "What was your dog's name?" or, "Did you find him when he got lost?" But Ben just sat at the table, rubbing his head and clearing his throat (a tic he has when he gets overwhelmed), and eventually he muttered, "Oh." When the psychologist gave him a pegboard with little cubes to fit over the pegs and instructed him to cover the whole board with the cubes (he only gave Ben enough to cover about half the board), Ben didn't ask for more pieces--he just rubbed his head and cleared his throat and waited until the psychologist finally offered to give him more pieces, to which Ben replied, "I guess." The test can take up to an hour, but Ben was done in less than half that because he just had no interest.
And then the waiting began. And I started to worry: What if Ben is diagnosed with Autism? And, what if he isn't? These were hard questions to wrestle with. On the one hand, if BYU diagnosed autism, then it was so...final. I mean, for a couple years we've believed that Ben has autism because the child psychiatrist said so after his brief interview, but that wasn't the result of any in-depth testing. There was always the thought in the back of our minds that maybe he was wrong; maybe we didn't have an autistic child after all...and there was some small hope in that possibility. On the other hand, what if BYU came back and said that everything we've believed about Ben was wrong, and that he isn't autistic after all? What happens to the IEP at school, and the services that our insurance pays for with an autism diagnosis? What if the problem is just that Ben is a hard kid, and we're not very good parents? The diagnosis of autism has given us an explanation for our son's challenges that we have clung to--without it, we'd be lost. I truly didn't know which result I wanted, and I nearly drove myself crazy thinking about it for one eternally long week.
Finally yesterday I sat down with the psychologist who had scored all the testing, and the results are in: Ben is a moderately functioning autistic child (I actually thought he was higher-functioning than the test results showed) who, because of his very high intellectual capacity, has great potential to get through school and...who knows from there. Will he ever be in a relationship? It's doubtful, because his interest in social interactions is very, very limited and he struggles a great deal to show empathy or emotional connection. Will he go to college? Perhaps, if we can accommodate his struggles with writing and communication.
But the psychologist said that we should live in a place of hopefulness. Ben has some strengths that many other children don't. He's smart, he's verbal, and he's just a dang cute kid (OK, I added the last one myself)! We move forward from here. The truth is, the world of "What If's..." is hostile and frightening. The world of "What Is" is something we can handle. And it's good to know what is.
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