J-Mac strikes again.
Last night Larry King had another show about autism. To his credit, at least he's TALKING about autism, which is more than most people in show business do. The show was entitled "Autism: Solving the Puzzle." To be honest, my initial thought (especially once I saw that the young man everyone calls "J-Mac" was the featured guest) was...Nope. Not gonna sit through another feel-good show about "autism" - and by "autism" they mean high-functioning verbal kids and/or kids whose parents are mega-rich.
But David said..."C'mon...let's watch it." I agreed, especially since I saw that other guests were involved: Holly Robinson Peete, Toni Braxton, and Doug Flutie - all of whom have sons with varying degrees of autism.
Of course, the footage from Jason McElwain's amazing basketball game two years ago had to be shown, and everyone congratulated him once again. Holly's son, who is 10 years old, had apparently expressed a desire to meet the great J-Mac (who is now 19) - so there was also footage of the Peete family welcoming J-Mac over for a few hoops in the driveway. So far the feel-good meter is off the charts.
Toni Braxton then chimed in, describing how much better her son is. I didn't catch how old her son Diezel is, but she was careful to mention that he is doing very well "because I have been able to get him all the treatments he needs." Yes. Indeed.
Between the fawning over J-Mac and the oozing sweetness of Holly and Toni, I was really starting to wish I had decided to clean the kitchen or fold some clothes instead of watching...but I persisted, rolling my eyes and "hmph-ing" every two seconds.
Let me say this: I recognize that Jason McElwain has struggled. His mom was with him, and she briefly explained that he was rather low functioning as a child. It IS truly amazing that he developed such a command of language, and that he has risen to minor (or major?) stardom because of his miraculous basketball game. Yes, it's wonderful, and I suppose part of me thinks, "Well, maybe Stephen will make huge leaps like that," and of course I would be ecstatic. But once again, the suspender-wearing, guest-interrupting, patronizing-question-asking Larry King is the media ringleader in promoting the inaccurate fact that Jason's autism is all that autism IS. He said, "J-Mac is the face of autism." I was getting my dander up over this, until the next guest finally got a chance to speak.
"Joining us from Boston, the great football legend, Doug Flutie...Doug has a son with autism. Doug, tell us...what has J-Mac done for the autism cause?" Doug looked straight into the camera and said, "Larry, basically, J-Mac has brought awareness to the autism issue...like the Doug Flutie Jr. Foundation has tried to do." Wow. No fawning, no over-doing it with the praise... Now, I'm interested.
Eventually, Larry got around to mentioning that there are various degrees of autism, and then polled his guests to find out about their kids' levels. Of course, J-Mac's mom said, "Now, he's high functioning." Ditto for Holly and Toni (well, Toni said mid-to high). Then it was Doug's turn. "Dougie is very low-functioning. He is 16 now, and he can't feed himself, dress himself, or talk at all." I watched intently as Doug looked straight into the camera, quietly and calmly saying, "Hey, my son can barely function..." and I noticed something - the lines on his face, the fatigue, the sadness in his eyes even as he smiled and told about the joy his son brings to him every day, the wistful hope in his voice, wanting so much for his son to progress. The face of a parent who dies inside when his child struggles to get through a day, the smile that somehow combines happiness with heartbreak, the clenched jaw that is equal parts stubbornness, frustration, and anger...the child who is trapped inside his body, with a brain and a heart and an imagination, the child who is scorned or overlooked because he appears to be dumb, the child who hurts and can't ask for help...these are the faces of autism. I recognize these faces...I see one in the mirror every day, in my husband's face every day, and in BOTH my sons' faces...one wanting his brother to just get better, and the other that faces every day dealing with challenges that I may never truly understand, but with a smile that melts your heart.
There was pretty much no response to Doug Flutie's rather down-to-earth description, so Larry moved the show along. The next question applied to everyone was: "What are your goals for your child?" Well, J-Mac answered on his own. He wants to be an assistant coach, which will be difficult, as his mom explained, with the learning problems he has. Well, more power to him, I say. Holly Robinson Peete's son wants to play basketball like J-Mac. And Toni's son is excited about going to a typical peer's birthday party, and she just wants him to continue to improve. So Larry leans on his hand and intones, "Doug...I suppose Dougie isn't ABLE to tell you his goals..." Such sensitivity. [Michelle to Larry: You MORON.] Doug paused, and said, "Well, no, Larry. He isn't. But our goals for him just involve him learning to function better in his everyday life." Larry, in a patronizing tone: "Well, Doug...do you have HOPE?" [Michelle to Larry: You are an idiot.] And Doug smiled. "Of course we do, Larry. Of course we do."
The rest of Larry King's show was more of the same old banter: What IS autism? Can it be cured? What causes it? At this point Dr. Jerry Kartzinel joined the panel. Dr. Kartzinel is a name you may recognize as the doctor who helped "cure" Jenny McCarthy's son Evan's autism. I believe that Dr. Kartzinel is a good man, and a good doctor - if only every large city had one like him, and if only every family could afford the huge fees he charges. Dr. Kartzinel addressed the "Do vaccines cause autism?" question, and unfortunately allowed the other panelists to engage in a discussion of thimerosal and its suspicious role in this autism thing. That's not to say it didn't ONCE play a part, but it's not the whole story. Thimerosal has been removed from kid's vaccines, and kids are STILL getting autism. Something else is going on here, I have no doubt. Is it merely coincidental that so many kids regress after a big batch of shots? Probably not. Perhaps their immature immune systems can't handle such a toxic load. Toni Braxton actually made that point, and for that I will pardon her for her comment about being able to give her child ALL the treatments he needed.
Dr. Kartzinel pointed out, very appropriately I thought, that the "experts" who continue to insist that autism is purely a genetic disorder cannot account for the epidemic we're seeing. "There is no such thing as a genetic epidemic." Amen, brother. And the good doctor finished up his moments on the show with a profound statement that needs to be absorbed by everyone in this country. When asked if a cure is possible, he said, "There HAS to be. There HAS to be a cure. We cannot keep sacrificing 1 out of every 150 children to this disease." People need to HEAR that, and be driven by fear to DO something.
J-Mac's mom had mentioned several times that he has to "rehearse" for any public speaking he does. He had been coached well, and was very composed and did a fairly good job staying on topic when asked a question. Of course, he has written a book (well, who hasn't?) and his final comment was to thank everyone in America for buying his book. His mom smiled. It seems she and her son have gotten to be quite the travelers, going around the country so that he can speak at conferences and accept awards. He even won an ESPY for his amazing basketball performance. I know before you say it, reader, that I'm slipping back into that bitter place...but I am only human, and while I am too tenderhearted to begrudge this young man every bit of success he can muster, I do not think his face is the "Face of Autism," as Mr. King labeled him. He can be the "Face of High-Functioning Autism" if he likes.
But I dropped the "Face of Autism" off at school this morning, in 35 degree weather, without a coat because apparently today was not a coat day, walked him down the hall as he smiled at friends while flapping his hands, and left him in his special needs classroom to work very, very hard to keep progressing, one little step at a time.
I got to kiss that sweet face goodbye, though...so I'm the lucky one. :-)
Thursday, February 28, 2008
Friday, February 15, 2008
Happy Birthday, Stephen
Today my baby is eight years old.
The child who wasn't "planned," born after a pregnancy that was full of nausea and bleeding from a low-lying placenta, the newborn who barely waited till we got to the hospital to make his appearance...that precious little piece of humanity has been with us for eight years now, and we are forever changed.
Unlike Kerry, who took his sweet time coming into the world (and he is still very laidback and easygoing), Stephen joined us with speed and urgency. Funny, that description still fits him today as well. I went from having contractions that were ten minutes apart to contractions that were two minutes apart after my water broke. We had to SPEED to the hospital and Stephen was born just over an hour later.
He was a good baby - he slept well and nursed well for the first few months. Then he developed reflux and had to take medicine for that. During his first year he would sometimes wake up wailing and crying (probably from gas pain) and it would take me a long time to get him calm. Still, he was fairly easy to care for during the day, and I reveled in my role as mommy to a two year old and a baby. Stephen learned to sit up at about 5 months, was babbling words (Mama, Dada, bye-bye, gone-gone) by about 9 or 10 months, and he walked at 11 months...he met all those milestones with no problems, and we felt comfortable and happy with our little family.
Sometime after Stephen turned a year old - maybe not until he was about 15 months old - I started to worry that he wasn't talking much more. In fact, when I thought about it, he wasn't saying the few words he had used frequently only a few months prior. I fretted and pondered this, but the pediatrician we had at the time reassured me: "He's your second child. They never talk as much as the first. Don't worry."
So, I tried not to...but by the time Stephen was 18 months old, I knew something was wrong. He never said a word. He would go into his room and play with one toy (one of those wooden bead roller coasters) for 30 to 45 minutes at a time, sliding the beads from one end of the toy to the other, one at a time, then sliding them back...over and over. He would take a toy truck, turn it upside down, and spin the wheels. When he wanted something, he would take my hand, lead me to the item, and put my hand on it, letting me know he wanted that book or toy.
I was secretly petrified. One night I happened to be at a bookstore by myself, and I wandered over to the parenting section. I saw a book about autism, and with shaking hands I picked it up. Even then, I knew. I flipped through, looking for some sort of concise description, and my heart froze when I began to read the so-called "red flags" of autism:
* Does not babble, point, or make meaningful gestures by 1 year of age
* Does not speak one word by 16 months
* Does not combine two words by 2 years
* Does not respond to name
* Loses language or social skills
* Poor eye contact
* Doesn't seem to know how to play with toys
* Excessively lines up toys or other objects
* Is attached to one particular toy or object
* Doesn't smile
* At times seems to be hearing impaired
Stephen showed 9 out of those 11 signs. He smiled, and he would often make eye contact, but every single one of the remaining statements described my child perfectly. I sat in the floor of that Barnes & Noble bookstore and cried like a baby. I read things like, "Autism is a lifelong neurological disorder." "Many children with autism eventually will be placed in institutional care." "There is no cure for autism."
Something inside of me shattered irreparably that night. I knew with a mother's certainty that my son had autism. I went home and walked into Stephen's room. I don't think he was in there at the time, but I remember sitting down heavily in the armchair. David walked in, took one look at me, and said, "What is it?" I looked at him, and in a voice I didn't recognize I said, "Stephen has autism." And I cried - for the child that I now knew might never speak, never play like other kids, never be "normal." We accepted the autism that very night, both of us...both of us knew that we had to deal with it and move on.
And we did. We had to jump through a few hoops - I found a hotline for kids at risk, called it, and a very helpful case worker helped me set up an appointment for a speech and hearing evaluation. I told her that we knew he could hear, and we also knew he couldn't speak - but regardless, this was the first step. We had to rule out a hearing problem.
I took Stephen to the first speech and hearing eval - and watched as cheerful women did their best to engage him. He stared at them blankly as they tried to get him to play with their colorful educational toys. They wrote furiously on their pads, and then told me that he had "some sort of speech delay." Really? Okay then. Hoop number 1.
In the weeks following we scheduled a hearing eval. I took Stephen to our childrens' hospital, and went with him into the hearing test booth. He refused to wear earphones (of course) and so we sat together in a chair while the technicians bounced sounds around, lit up buzzing toys in various corners (meant to draw his attention when he heard them) and other bells and whistles. Stephen sat resolutely in my lap, staring straight ahead. Even when the sounds got so loud they were bothering ME, he never budged. The speech and hearing professional told me gravely, "According to these results, Stephen has profound hearing loss." Really? Okay then. Hoop number 2.
Because David and I, having lived with Stephen his whole life and knowing that he could hear perfectly well when he WANTED to, insisted, we were granted the opportunity to have a test called an ABR (automated brain response) done on Stephen. We took him to a pediatric ENT who looked in Stephen's ears (with much fighting and difficulty) and said that he would sedate him, get any fluid out that was accumulated, put tubes in, and perform the test. We took Stephen a few days later and watched as he was given something to relax him, dressed him in a tiny flannel hospital gown, and watched as our child was wheeled to an OR to have these procedures done. You see, the ABR was going to measure his hearing capacity without requiring him to participate. An hour later a grim hearing professional came out to tell us that Stephen's hearing was "perfectly normal." Really? Okay then. Hoop number 3.
Finally, after jumping through hoops as impressively as well-trained poodles, a few weeks later a pediatric behavioral specialist came to our house to test Stephen. I watched as she gave him activities to do - most of which he ignored - and as she tried in various ways to engage him. After a couple of hours, she sat quietly at our table tabulating her results and charting the data. David, my mom, and I sat in the living room, silently staring at the walls, the TV, each other. Then she walked back into the room, took a breath, and said, "According to the test results, Stephen has autism."
My mom immediately cried, David maintained his serious look, and I felt myself sink a little deeper. There was no shock, no panic, no horrible realization. It was more like someone had just put a big iron padlock on a door that I had already closed tightly on my own.
Stephen was 2 years and 3 months old, and on that day in May, I felt his life was over.
I began to read everything I could get my hands on, and before long I came across a book that fell into the "I cured my child of autism" genre. It was a mother's story (and I'm a sucker for those) of how she changed her child's diet and rescued him from this dreaded disorder. I've mentioned before that we jumped into that notion with both feet, and I cooked and cajoled and tried to get Stephen to eat rather weird substitutions for foods he liked. We took him to the first DAN! doctor who did an EEG and told us he was having seizures, and started medicating him for those. We struggled to get urine samples. We took him to other doctors. We forced vile-smelling and -tasting anti-fungal drugs down his throat. We did more tests, all the while trying to pretend we saw results. But in the end, we didn't. We had traveled far and wide, spent thousands of dollars, and put Stephen through the wringer...only to discover that maybe this stuff didn't work. For some people? Maybe. For us, apparently not.
The years have passed...often turbulently, mostly chaotically, eventfully to say the least. Our sons have grown before our eyes. I would not trade one single moment, when I stop to consider it all. Even the nights of Stephen screaming, the times I've felt like I was going to pop my cork, the times I've worried and dreaded doctor's appointments, or haircuts...like it or not, simply MAKING it through those times has given me strength. I know that there isn't much that comes that I can't handle - I may not always come out feeling great, but I can make it. I often think about children like this one, like this most precious son of mine, who are born to parents who, for whatever reason, can't deal with things...and I think, "Who takes care of those babies? Who loves the ones who are sometimes almost unlovable?" It breaks my heart, but I rest in the knowledge that Stephen is surrounded by people who love him - by a mom and a dad who grit their teeth and push through the problems, by a shining, golden big brother with the patience and kindness of an old soul, by grandparents who do their very best...and this child of mine somehow works his magic on almost everyone he meets. Everyone at his school smiles when they see Stephen walk in...they rejoice with us in his triumphs, and they truly love this little boy who came so close to being lost. He has so very far to go, but he is growing and healthy, he reads and writes his letters, he sings, he dances, he plays, he hugs his daddy and laughs with him, he kisses me and rests his head on my shoulder...
Stephen is eight today, and it turns out that his life is far from over.
The child who wasn't "planned," born after a pregnancy that was full of nausea and bleeding from a low-lying placenta, the newborn who barely waited till we got to the hospital to make his appearance...that precious little piece of humanity has been with us for eight years now, and we are forever changed.
Unlike Kerry, who took his sweet time coming into the world (and he is still very laidback and easygoing), Stephen joined us with speed and urgency. Funny, that description still fits him today as well. I went from having contractions that were ten minutes apart to contractions that were two minutes apart after my water broke. We had to SPEED to the hospital and Stephen was born just over an hour later.
He was a good baby - he slept well and nursed well for the first few months. Then he developed reflux and had to take medicine for that. During his first year he would sometimes wake up wailing and crying (probably from gas pain) and it would take me a long time to get him calm. Still, he was fairly easy to care for during the day, and I reveled in my role as mommy to a two year old and a baby. Stephen learned to sit up at about 5 months, was babbling words (Mama, Dada, bye-bye, gone-gone) by about 9 or 10 months, and he walked at 11 months...he met all those milestones with no problems, and we felt comfortable and happy with our little family.
Sometime after Stephen turned a year old - maybe not until he was about 15 months old - I started to worry that he wasn't talking much more. In fact, when I thought about it, he wasn't saying the few words he had used frequently only a few months prior. I fretted and pondered this, but the pediatrician we had at the time reassured me: "He's your second child. They never talk as much as the first. Don't worry."
So, I tried not to...but by the time Stephen was 18 months old, I knew something was wrong. He never said a word. He would go into his room and play with one toy (one of those wooden bead roller coasters) for 30 to 45 minutes at a time, sliding the beads from one end of the toy to the other, one at a time, then sliding them back...over and over. He would take a toy truck, turn it upside down, and spin the wheels. When he wanted something, he would take my hand, lead me to the item, and put my hand on it, letting me know he wanted that book or toy.
I was secretly petrified. One night I happened to be at a bookstore by myself, and I wandered over to the parenting section. I saw a book about autism, and with shaking hands I picked it up. Even then, I knew. I flipped through, looking for some sort of concise description, and my heart froze when I began to read the so-called "red flags" of autism:
* Does not babble, point, or make meaningful gestures by 1 year of age
* Does not speak one word by 16 months
* Does not combine two words by 2 years
* Does not respond to name
* Loses language or social skills
* Poor eye contact
* Doesn't seem to know how to play with toys
* Excessively lines up toys or other objects
* Is attached to one particular toy or object
* Doesn't smile
* At times seems to be hearing impaired
Stephen showed 9 out of those 11 signs. He smiled, and he would often make eye contact, but every single one of the remaining statements described my child perfectly. I sat in the floor of that Barnes & Noble bookstore and cried like a baby. I read things like, "Autism is a lifelong neurological disorder." "Many children with autism eventually will be placed in institutional care." "There is no cure for autism."
Something inside of me shattered irreparably that night. I knew with a mother's certainty that my son had autism. I went home and walked into Stephen's room. I don't think he was in there at the time, but I remember sitting down heavily in the armchair. David walked in, took one look at me, and said, "What is it?" I looked at him, and in a voice I didn't recognize I said, "Stephen has autism." And I cried - for the child that I now knew might never speak, never play like other kids, never be "normal." We accepted the autism that very night, both of us...both of us knew that we had to deal with it and move on.
And we did. We had to jump through a few hoops - I found a hotline for kids at risk, called it, and a very helpful case worker helped me set up an appointment for a speech and hearing evaluation. I told her that we knew he could hear, and we also knew he couldn't speak - but regardless, this was the first step. We had to rule out a hearing problem.
I took Stephen to the first speech and hearing eval - and watched as cheerful women did their best to engage him. He stared at them blankly as they tried to get him to play with their colorful educational toys. They wrote furiously on their pads, and then told me that he had "some sort of speech delay." Really? Okay then. Hoop number 1.
In the weeks following we scheduled a hearing eval. I took Stephen to our childrens' hospital, and went with him into the hearing test booth. He refused to wear earphones (of course) and so we sat together in a chair while the technicians bounced sounds around, lit up buzzing toys in various corners (meant to draw his attention when he heard them) and other bells and whistles. Stephen sat resolutely in my lap, staring straight ahead. Even when the sounds got so loud they were bothering ME, he never budged. The speech and hearing professional told me gravely, "According to these results, Stephen has profound hearing loss." Really? Okay then. Hoop number 2.
Because David and I, having lived with Stephen his whole life and knowing that he could hear perfectly well when he WANTED to, insisted, we were granted the opportunity to have a test called an ABR (automated brain response) done on Stephen. We took him to a pediatric ENT who looked in Stephen's ears (with much fighting and difficulty) and said that he would sedate him, get any fluid out that was accumulated, put tubes in, and perform the test. We took Stephen a few days later and watched as he was given something to relax him, dressed him in a tiny flannel hospital gown, and watched as our child was wheeled to an OR to have these procedures done. You see, the ABR was going to measure his hearing capacity without requiring him to participate. An hour later a grim hearing professional came out to tell us that Stephen's hearing was "perfectly normal." Really? Okay then. Hoop number 3.
Finally, after jumping through hoops as impressively as well-trained poodles, a few weeks later a pediatric behavioral specialist came to our house to test Stephen. I watched as she gave him activities to do - most of which he ignored - and as she tried in various ways to engage him. After a couple of hours, she sat quietly at our table tabulating her results and charting the data. David, my mom, and I sat in the living room, silently staring at the walls, the TV, each other. Then she walked back into the room, took a breath, and said, "According to the test results, Stephen has autism."
My mom immediately cried, David maintained his serious look, and I felt myself sink a little deeper. There was no shock, no panic, no horrible realization. It was more like someone had just put a big iron padlock on a door that I had already closed tightly on my own.
Stephen was 2 years and 3 months old, and on that day in May, I felt his life was over.
I began to read everything I could get my hands on, and before long I came across a book that fell into the "I cured my child of autism" genre. It was a mother's story (and I'm a sucker for those) of how she changed her child's diet and rescued him from this dreaded disorder. I've mentioned before that we jumped into that notion with both feet, and I cooked and cajoled and tried to get Stephen to eat rather weird substitutions for foods he liked. We took him to the first DAN! doctor who did an EEG and told us he was having seizures, and started medicating him for those. We struggled to get urine samples. We took him to other doctors. We forced vile-smelling and -tasting anti-fungal drugs down his throat. We did more tests, all the while trying to pretend we saw results. But in the end, we didn't. We had traveled far and wide, spent thousands of dollars, and put Stephen through the wringer...only to discover that maybe this stuff didn't work. For some people? Maybe. For us, apparently not.
The years have passed...often turbulently, mostly chaotically, eventfully to say the least. Our sons have grown before our eyes. I would not trade one single moment, when I stop to consider it all. Even the nights of Stephen screaming, the times I've felt like I was going to pop my cork, the times I've worried and dreaded doctor's appointments, or haircuts...like it or not, simply MAKING it through those times has given me strength. I know that there isn't much that comes that I can't handle - I may not always come out feeling great, but I can make it. I often think about children like this one, like this most precious son of mine, who are born to parents who, for whatever reason, can't deal with things...and I think, "Who takes care of those babies? Who loves the ones who are sometimes almost unlovable?" It breaks my heart, but I rest in the knowledge that Stephen is surrounded by people who love him - by a mom and a dad who grit their teeth and push through the problems, by a shining, golden big brother with the patience and kindness of an old soul, by grandparents who do their very best...and this child of mine somehow works his magic on almost everyone he meets. Everyone at his school smiles when they see Stephen walk in...they rejoice with us in his triumphs, and they truly love this little boy who came so close to being lost. He has so very far to go, but he is growing and healthy, he reads and writes his letters, he sings, he dances, he plays, he hugs his daddy and laughs with him, he kisses me and rests his head on my shoulder...
Stephen is eight today, and it turns out that his life is far from over.
Monday, February 4, 2008
Straining toward hope
Thankfully it doesn't happen too often, but it happened Saturday night.
David and I both hit rock bottom at the same time. Usually we take turns, and that really helps situations to be a bit more bearable. When we both feel down, it's not an easy thing to deal with at all.
We decided to go out for dinner, and as I've mentioned on several occasions, that in itself is quite an undertaking. We split up - Stephen and I dropped David and Kerry off at Cracker Barrel (I had already told David what I wanted so he could order for me) and then we headed to the McDonalds right across the highway. Strangely enough there wasn't a long line at the drive-thru, so we were back at CB in about 15 minutes. And of course David and Kerry hadn't even gotten seated yet...so there we were, the four of us, standing in the overcrowded "store" part of the restaurant, surrounded by a million junky items and trying to explain to Stephen that we had to WAIT. I could see his brain working: "Mom is holding the bag with my food in it. Usually we walk right in, and I eat. This is a problem."
He started whining rather softly, but it quickly escalated in volume and intensity. The people closest to us in the store started with THE LOOK. He began pulling on my hand..."Lesss go! Lessss go!" I kept leaning down, hugging him tightly, and saying in a calm voice, "Buddy, we have to WAIT..." and doing the sign language for "wait." But it doesn't work. I started remembering other visits to Cracker Barrel, and the last several times Stephen hasn't had to do this kind of waiting...so he clearly doesn't understand why his mom is torturing him. In desperation I took him into the bathroom and turned on the faucet in the sink, hoping he'd play in the water. He did, for about 10 seconds. "Lessss go!"
We emerged from the bathroom and I told David, "Time to play the autism card," which means: go to the hostess, tell her what's going on, and pretty much beg for quick seating so as not to cause a huge scene. So he does, and it works. On the way to the table she told David that her cousin has autism, and that she understands perfectly. Thank goodness for small favors.
It's hard to describe in words exactly what the effect of 20 minutes of full-on, publicly displayed, loudly proclaimed autism can have on a person's nerves. But the four of us settled down at our table, I got Stephen's food out, and we tried to relax. The problem is that once the tension gets hold of you in a significant way, it's hard to shake it. At one point Stephen reached over and touched my arm, and I jumped a few inches out of my seat...my nerves were a jangled mess. But we made it though the meal well enough...no spills, and Stephen only tried once to escape from the table.
We made a trip to Wal-Mart, too, without significant incident...and we trundled home, mostly just glad it was all over. Once we got inside, David had to leave again because Wal-Mart was predictably out of Stephen's Pull-Ups...and as he prepared to go out the door to try another store, Stephen launched into a tantrum because he couldn't get all of us to "Go 'way!" from the living room - he tries to get us to leave so that he can sneak a tape into the non-secured VCR and fast-forward it in peace. Kerry left and went to his room, and I stood guard. As David left he said, "You know, all of this tension is going to have an effect on Kerry...I just don't know what it's going to be..." Right now Kerry seems very much a typical 10 year old boy...maybe a bit too forgetful and a bit too enamored with video games, but also extremely compassionate and fun-loving, with a sense of humor better than anyone I know. But, will it last? Is he being done irreparable harm by living in this environment?
I got Stephen calm, and ready for bed. Kerry came back to the living room, and we spent some time just talking, and I read to him from the Harry Potter book he's reading...and he was smiling and happy and the same sweet Kerry I know. After both boys were in bed, I spent a lot of time thinking about what David had said. We both know that our family life is far from the ideal...and yes, tension and stress seem to be an inevitable part of daily living. We also try very hard, though, to help Kerry through those times, both by letting him express how he feels (embarrassed, annoyed, tired) and by making time to do things just for him. But is it enough?
Later David and I were talking. We worry that when Kerry gets to be an adult that he will want to run far from the home he has known all his life - a home that has always included a little brother with autism, who messes up his stuff and seemingly gets away with it, who throws nerve-tangling tantrums, whose insistence on sameness brings about endless pre-emptive planning. I mean, who wouldn't want to get as far away from that as possible?
As the reality of that scenario began to sink into my consciousness, I was hit with a wave of despair, of pure and utter hopelessness. I felt like I was going to be forced to choose between my sons - do I keep Stephen in my care as long as I am physically able to handle him, and risk alienating my shining golden son who deserves every possible chance to develop into the amazing man I know he will become, or do I focus on Kerry's potential and "find a place" to put Stephen where he may or may not be cared for and respected as a person? It seems an impossible choice, and I felt like a knife was cutting into me just to consider these thoughts.
I went into the pitch dark living room, grabbed a few tissues, and let myself grieve. There simply was no other choice at the moment. Eventually I was spent, and I crawled back to bed. Mercifully my brain simply said, "No more," and allowed my body to shut down. There was no resolution, but I slept.
I woke up the next morning to the sounds of a quietly happy little boy, still in bed but perhaps talking to one of his stuffed animals. I went down the hall to the couch, and before long he came padding behind me, and climbed under the quilt. He snuggled close to me and we both slept for another hour. When I woke up the second time, the first thing I heard was the sound of birds in the tree outside our deck. I looked down into Stephen's face and had the rare opportunity to just watch him sleep. And then, completely unbidden, I was flooded with a calmness and a certainty that was completely impossible. I knew that we would make it. I thought of Kerry. I pictured him as he'd been when I walked past his room earlier...covered nearly to the top of his head, arms wrapped around his bear, and I knew just as certainly that he was going to succeed and prosper.
Now, before you go getting all misty and mystical on me...I don't attribute my feelings to a message or sign from God. I don't know WHERE it came from, or if it will last. Call it cockeyed optimism, call it a coping mechanism, call it certifiably nutsy behavior. I can't seem to totally give up on much of anything, really. Regardless, that peace and calm energized me. I realized that ultimately what I had done was make a choice. A choice between carrying around the boulder of dread and worry and despair, or reaching and stretching toward a hopeful future. Even as I type that I know that it's a longshot. Almost everything points to problems and worries...but to make it, to stay sane, to grab the elusive moments of happiness, I choose to believe that we will make it. That one day, we'll arrive at a point of triumph...battle-weary and scarred with the pain of a thousand exhausting days, but alive.
I'm straining and clawing my way towards hope...it's all I have.
David and I both hit rock bottom at the same time. Usually we take turns, and that really helps situations to be a bit more bearable. When we both feel down, it's not an easy thing to deal with at all.
We decided to go out for dinner, and as I've mentioned on several occasions, that in itself is quite an undertaking. We split up - Stephen and I dropped David and Kerry off at Cracker Barrel (I had already told David what I wanted so he could order for me) and then we headed to the McDonalds right across the highway. Strangely enough there wasn't a long line at the drive-thru, so we were back at CB in about 15 minutes. And of course David and Kerry hadn't even gotten seated yet...so there we were, the four of us, standing in the overcrowded "store" part of the restaurant, surrounded by a million junky items and trying to explain to Stephen that we had to WAIT. I could see his brain working: "Mom is holding the bag with my food in it. Usually we walk right in, and I eat. This is a problem."
He started whining rather softly, but it quickly escalated in volume and intensity. The people closest to us in the store started with THE LOOK. He began pulling on my hand..."Lesss go! Lessss go!" I kept leaning down, hugging him tightly, and saying in a calm voice, "Buddy, we have to WAIT..." and doing the sign language for "wait." But it doesn't work. I started remembering other visits to Cracker Barrel, and the last several times Stephen hasn't had to do this kind of waiting...so he clearly doesn't understand why his mom is torturing him. In desperation I took him into the bathroom and turned on the faucet in the sink, hoping he'd play in the water. He did, for about 10 seconds. "Lessss go!"
We emerged from the bathroom and I told David, "Time to play the autism card," which means: go to the hostess, tell her what's going on, and pretty much beg for quick seating so as not to cause a huge scene. So he does, and it works. On the way to the table she told David that her cousin has autism, and that she understands perfectly. Thank goodness for small favors.
It's hard to describe in words exactly what the effect of 20 minutes of full-on, publicly displayed, loudly proclaimed autism can have on a person's nerves. But the four of us settled down at our table, I got Stephen's food out, and we tried to relax. The problem is that once the tension gets hold of you in a significant way, it's hard to shake it. At one point Stephen reached over and touched my arm, and I jumped a few inches out of my seat...my nerves were a jangled mess. But we made it though the meal well enough...no spills, and Stephen only tried once to escape from the table.
We made a trip to Wal-Mart, too, without significant incident...and we trundled home, mostly just glad it was all over. Once we got inside, David had to leave again because Wal-Mart was predictably out of Stephen's Pull-Ups...and as he prepared to go out the door to try another store, Stephen launched into a tantrum because he couldn't get all of us to "Go 'way!" from the living room - he tries to get us to leave so that he can sneak a tape into the non-secured VCR and fast-forward it in peace. Kerry left and went to his room, and I stood guard. As David left he said, "You know, all of this tension is going to have an effect on Kerry...I just don't know what it's going to be..." Right now Kerry seems very much a typical 10 year old boy...maybe a bit too forgetful and a bit too enamored with video games, but also extremely compassionate and fun-loving, with a sense of humor better than anyone I know. But, will it last? Is he being done irreparable harm by living in this environment?
I got Stephen calm, and ready for bed. Kerry came back to the living room, and we spent some time just talking, and I read to him from the Harry Potter book he's reading...and he was smiling and happy and the same sweet Kerry I know. After both boys were in bed, I spent a lot of time thinking about what David had said. We both know that our family life is far from the ideal...and yes, tension and stress seem to be an inevitable part of daily living. We also try very hard, though, to help Kerry through those times, both by letting him express how he feels (embarrassed, annoyed, tired) and by making time to do things just for him. But is it enough?
Later David and I were talking. We worry that when Kerry gets to be an adult that he will want to run far from the home he has known all his life - a home that has always included a little brother with autism, who messes up his stuff and seemingly gets away with it, who throws nerve-tangling tantrums, whose insistence on sameness brings about endless pre-emptive planning. I mean, who wouldn't want to get as far away from that as possible?
As the reality of that scenario began to sink into my consciousness, I was hit with a wave of despair, of pure and utter hopelessness. I felt like I was going to be forced to choose between my sons - do I keep Stephen in my care as long as I am physically able to handle him, and risk alienating my shining golden son who deserves every possible chance to develop into the amazing man I know he will become, or do I focus on Kerry's potential and "find a place" to put Stephen where he may or may not be cared for and respected as a person? It seems an impossible choice, and I felt like a knife was cutting into me just to consider these thoughts.
I went into the pitch dark living room, grabbed a few tissues, and let myself grieve. There simply was no other choice at the moment. Eventually I was spent, and I crawled back to bed. Mercifully my brain simply said, "No more," and allowed my body to shut down. There was no resolution, but I slept.
I woke up the next morning to the sounds of a quietly happy little boy, still in bed but perhaps talking to one of his stuffed animals. I went down the hall to the couch, and before long he came padding behind me, and climbed under the quilt. He snuggled close to me and we both slept for another hour. When I woke up the second time, the first thing I heard was the sound of birds in the tree outside our deck. I looked down into Stephen's face and had the rare opportunity to just watch him sleep. And then, completely unbidden, I was flooded with a calmness and a certainty that was completely impossible. I knew that we would make it. I thought of Kerry. I pictured him as he'd been when I walked past his room earlier...covered nearly to the top of his head, arms wrapped around his bear, and I knew just as certainly that he was going to succeed and prosper.
Now, before you go getting all misty and mystical on me...I don't attribute my feelings to a message or sign from God. I don't know WHERE it came from, or if it will last. Call it cockeyed optimism, call it a coping mechanism, call it certifiably nutsy behavior. I can't seem to totally give up on much of anything, really. Regardless, that peace and calm energized me. I realized that ultimately what I had done was make a choice. A choice between carrying around the boulder of dread and worry and despair, or reaching and stretching toward a hopeful future. Even as I type that I know that it's a longshot. Almost everything points to problems and worries...but to make it, to stay sane, to grab the elusive moments of happiness, I choose to believe that we will make it. That one day, we'll arrive at a point of triumph...battle-weary and scarred with the pain of a thousand exhausting days, but alive.
I'm straining and clawing my way towards hope...it's all I have.