When Alex was in special education preschool, some of the goals included in his IEP focused upon expressive language, which was a real area of weakness for him then and one he continues to struggle with even today. At that time, the suggestion was for him to work on statements that began with “I want” or “I need.” Since Alex has always confused first and second person pronouns, mixing up I and you, simply starting these sentences was tough for him. He would avoid the pronouns completely by saying something like, “Want cookie,” reminiscent of Sesame Street’s Cookie Monster. Sometimes he would drop the verb, as well, and just tell us, “Cookie.” We found him especially endearing when he would ask for a cookie instead of demanding one, which was more typical since he was docile and sweet. To do this, he would tilt his head, smile, and ask, “Cookie?”
Later, as he gained more confidence in his speech, he would more often ask for things by saying, “How ‘bout,” as in “How ‘bout some juice?” or “How ‘bout go to Wal-Mart?” Similarly, he improved his ability to let his needs be known by telling us things such as, “Need a haircut” or “Need a Band-Aid.” When he was younger, he thought the way to fix anything that didn't work was to put a new battery in it. Perhaps because he played with so many electronic toys and had seen them rev back to life with new batteries, Alex believed that somehow batteries were a magic cure. I remember once that he had dropped some toy of his and was upset that it no longer worked. I kept trying to explain to him that it was broken, but he kept earnestly insisting, “Needs new batteries!” If only putting in new batteries could solve every problem so easily, life would be much simpler.
The other night, Alex came running frantically into the family room, where Ed and I were watching television. Clearly upset and suffering from an anxiety attack, he blurted something he’s never said before: “I need an Ativan!’ Alex’s doctor has prescribed a low dose of the sedative Ativan to help ease his anxiety attacks, but we only give it to him when he’s very agitated. In fact, we don’t even tell him that we’re giving him Ativan because that usually makes him more upset, realizing that he needs to be sedated. Instead, we’ve been telling him lately that we’re giving him a vitamin to make him feel better. While we probably shouldn’t deceive him, we know that telling him the truth would upset him more, and we’re less likely to get our fingers bitten when we place the pill in his mouth. It’s a win-win situation as far as we’re concerned. Therefore, we found it surprising that he requested his anxiety medication specifically. When we asked him why he needed it, he explained that he was upset about Monopoly Junior [his current obsession that sends him into anxiety attacks]. Seeing that his hands were shaking from excess adrenaline, we agreed with his statement of need and gave him an Ativan pill, which calmed his nerves within a few minutes. To be honest, I miss those days when juice, cookies, Band-Aids, or batteries solved all of Alex’s problems. Although I wish Alex didn’t suffer anxiety attacks, I’m thankful that he not only has become so in tune with his emotions, but also that he can express himself to explain what’s wrong and what he needs to solve the problem. We’re just hoping that he will someday soon say, “I need to stop thinking about Monopoly Junior.” Now that would be something we want to hear.
“I will answer them before they even call to me. While they are still talking about their needs, I will go ahead and answer their prayers.” Isaiah 65:24
Wednesday, September 28, 2011
Sunday, September 25, 2011
Nostalgia
From time to time, Alex goes through a phase where he revisits his past. For example, this week, he has been pulling out old books and handheld electronic games and enjoyed spending time reading and playing these former favorite activities, finding them interesting again. While I’m not thrilled that he strews these books and game all over the floor in this rediscovery process, I’m pleased that he’s entertaining himself with what he already has. It’s nice to see him engaged in books and games that he had put away for months, even years. Included in these books he’s been re-reading lately are his old homeschooling textbooks, especially his math books, which isn’t surprising since math has always been his favorite subject. In addition, he’s also been playing several electronic games, including Deal or No Deal and Jeopardy. I’m sure that his reawakened interest in watching the Game Show Network probably has motivated him to pull out his own home versions of these games so that he can play along as he watches them on television.
Unfortunately, these reminders of the past have a negative aspect. Along with the pleasure they bring Alex, he also becomes a pain in obsessing over past incidents. This week, we’ve had to listen to him complain again about previous obsessions: his typewriter, the computer game Monopoly Junior, and people’s voices. Although after his summer of basically self-imposed silence, we like hearing him speak again, we wish he’d talk about something he likes instead of things that bother him. For him, rambling on about when he got his typewriter in 2002, and how he hates Monopoly Junior because it’s a low scoring game, and how he doesn’t want to keep track of people’s voices [in his system where he assigned points for volume and pitch of voices] appears to be his attempt to banish demons through his own form of talk therapy. Listening to his repetitive diatribe is tiresome, especially when he becomes really agitated and needs us to write down his grievances and repeat back what he’s said in some sort of reassurance. Needless to say, we’ll be delighted when he gets past this form of revisiting of his younger years.
With all these reminders of his past, Alex has started a new activity that is actually nostalgic for me. Our cable company offers several channels devoted to various types of music through a program called Music Choice. I often have Music Choice playing on the television as background music when I’m grading papers, doing laundry, or working on the computer. Recently, Alex seemed to find my listening to Music Choice interesting because he would come running to the television when he’d hear songs that he liked and/or were familiar. While I like to listen to a variety of music, flipping between the True Country, Today’s Country, Solid Gold Oldies, ‘70s, '80s, Pop Hits, and Soft Rock channels, Alex tended to drop what he was doing when he heard country or '80s songs. Music Choice offers Alex an added bonus in that they list the title of the song and album/CD, the artist, and most importantly for him, the date the song was released. Since Alex is a country music fan, I wasn’t surprised he wanted to come listen when he heard Alan Jackson, Garth Brooks, or Shania Twain, all favorites of his. However, his sudden interest in '80s music, the songs of my young adulthood—when I was his age—intrigued me. This past week, he’s opted to listen to Music Choice for hours at a time, and he’s become a devotee of the '80s channel. For me, these songs are nostalgic; for Alex, most songs are new. As the familiar tunes of Fleetwood Mac, Hall and Oates, and Lionel Richie play, I find myself humming along to those songs I played repeatedly when I was younger on albums, then cassettes, and later CD’s. One evening, I heard Alex’s voice while he was listening to Van Halen, and as I approached the room, where I could tell he was dancing around from the thumping sounds on the floor, I could figure out that he was singing the lyrics, “Might as well jump, JUMP!” When he looked up and saw me grinning at him, he quickly sat down, embarrassed that I’d witnessed his mini-concert. Not wanting to spoil his fun, I left so that he could once again enjoy the music, uninhibited. I hope he continues to find joy in the old songs, and perhaps music will soothe him so that the obsessions of his past will dwindle and fade away, allowing him just to dance.
“God keeps such people so busy enjoying life that they take no time to brood over the past.” Ecclesiastes 5:20
Unfortunately, these reminders of the past have a negative aspect. Along with the pleasure they bring Alex, he also becomes a pain in obsessing over past incidents. This week, we’ve had to listen to him complain again about previous obsessions: his typewriter, the computer game Monopoly Junior, and people’s voices. Although after his summer of basically self-imposed silence, we like hearing him speak again, we wish he’d talk about something he likes instead of things that bother him. For him, rambling on about when he got his typewriter in 2002, and how he hates Monopoly Junior because it’s a low scoring game, and how he doesn’t want to keep track of people’s voices [in his system where he assigned points for volume and pitch of voices] appears to be his attempt to banish demons through his own form of talk therapy. Listening to his repetitive diatribe is tiresome, especially when he becomes really agitated and needs us to write down his grievances and repeat back what he’s said in some sort of reassurance. Needless to say, we’ll be delighted when he gets past this form of revisiting of his younger years.
With all these reminders of his past, Alex has started a new activity that is actually nostalgic for me. Our cable company offers several channels devoted to various types of music through a program called Music Choice. I often have Music Choice playing on the television as background music when I’m grading papers, doing laundry, or working on the computer. Recently, Alex seemed to find my listening to Music Choice interesting because he would come running to the television when he’d hear songs that he liked and/or were familiar. While I like to listen to a variety of music, flipping between the True Country, Today’s Country, Solid Gold Oldies, ‘70s, '80s, Pop Hits, and Soft Rock channels, Alex tended to drop what he was doing when he heard country or '80s songs. Music Choice offers Alex an added bonus in that they list the title of the song and album/CD, the artist, and most importantly for him, the date the song was released. Since Alex is a country music fan, I wasn’t surprised he wanted to come listen when he heard Alan Jackson, Garth Brooks, or Shania Twain, all favorites of his. However, his sudden interest in '80s music, the songs of my young adulthood—when I was his age—intrigued me. This past week, he’s opted to listen to Music Choice for hours at a time, and he’s become a devotee of the '80s channel. For me, these songs are nostalgic; for Alex, most songs are new. As the familiar tunes of Fleetwood Mac, Hall and Oates, and Lionel Richie play, I find myself humming along to those songs I played repeatedly when I was younger on albums, then cassettes, and later CD’s. One evening, I heard Alex’s voice while he was listening to Van Halen, and as I approached the room, where I could tell he was dancing around from the thumping sounds on the floor, I could figure out that he was singing the lyrics, “Might as well jump, JUMP!” When he looked up and saw me grinning at him, he quickly sat down, embarrassed that I’d witnessed his mini-concert. Not wanting to spoil his fun, I left so that he could once again enjoy the music, uninhibited. I hope he continues to find joy in the old songs, and perhaps music will soothe him so that the obsessions of his past will dwindle and fade away, allowing him just to dance.
“God keeps such people so busy enjoying life that they take no time to brood over the past.” Ecclesiastes 5:20
Wednesday, September 21, 2011
Alphabetical Reminders
After a challenging few days with Alex, who has had several verbal meltdowns this week, I have been introspective about what sets off this behavior in him. On Monday, I spent about an hour talking him down from his upset over the game Monopoly Junior, which annoys him because it is a low-scoring game. Despite my best attempts to remind him gently hat he hasn’t played the game in years and that he never has to play it again, he wanted to obsess over how boring the game is. [What’s more boring than Monopoly Junior? Listening to a teenager with autism talking about it endlessly!] As I calmly reassured him, he would settle down, only to arise again in frustration repeatedly, as though we were living our version of the movie Groundhog Day. When I’m in situations like that, I always half-jokingly wonder if I’m on Candid Camera and that someone is getting a real laugh out of watching me reason on a topic that is simply unreasonable. Despite two more rounds of Monopoly Junior mania, we all survived the day, ready for the next arrival of verbal sparring.
Once a meltdown has subsided, I always go into scientist mode, analyzing what might have aggravated Alex. Was it something he ate? Do his supplements or medications need tweaking? Is he not feeling well? Did I say something to annoy him? Is the pollen count high? Is there a change in air pressure? Most of the time, we have no definitive answers about what upsets Alex, but through experience over the years, we have become pretty adept at handling him when he is agitated. If any good can come of these recent meltdowns, perhaps I can share our first-hand experience in hopes that parents, teachers, or others who deal with children with autism can benefit from what we’ve learned. Since I like to organize information in a way that is easy to remember, I’ve decided to share my top ten autism meltdown management tips using alphabetical clues.
A-ANXIETY: I’m convinced that meltdowns are anxiety attacks in which the child reverts to fight-or-flight behavior. Alex takes the fight route, primarily in the form of verbal aggression, but he can be physically aggressive, as well. The shaking of his hands indicates excess adrenaline to me, and since I have often dealt with the flight form in my own anxiety attacks, I know that the anxiety can be overwhelming.
B-BEHAVIOR: The child is not deliberately being bad or defiant; he/she truly can’t help his/her actions. Therefore, punishment is not appropriate. Alleviating the source of the anxiety should be the only objective for the adult who is caring for the child.
C-CALM: The more upset the child is, the more important it is for the adult to remain calm. When the child is yelling or physically attacking, keeping one’s composure is not easy. However, the adult must not add to the child’s anxiety by yelling back.
D-DON’T ARGUE: No matter what ridiculous things the child says, do not try to convince him/her of how wrong those words are. In fact, it’s best to say as little as possible and allow the child to relieve stress by verbalizing any concerns. If the adult must talk, only help and positive comments should be offered.
E-ELIMINATE: If possible, eliminate any triggers that are upsetting the child. For example, if the child is mad about a puzzle he/she can’t solve, remove it from his/her sight until the storm has passed. If the child is bothered by sensory issues, such as the humming of an air vent or the noise of a computer printer, move him/her away from these distractions.
F-FRUSTRATION: Frustration often leads to anxiety, which leads to meltdowns. If the child seems overwhelmed, give him/her a break or encouragement. Sometimes perfectionism will make the child be too hard on himself/herself; other times pushing the child too hard can be overwhelming. Watch for signs that the child is being pushed too hard, either from internal or external sources.
G-GIVE SPACE: If the child is upset, don’t stand over him/her, which may cause more agitation. Also, for one’s own safety, keep out of striking or kicking range.
H-HANDS OFF: Once the child is in meltdown mode, do not touch or restrain the child unless for safety reasons because touch can escalate the anxiety. Children who are sensory defensive often become upset, rather than calmed by being touched.
I-ISOLATE: If the meltdown is happening in a public place, such as a classroom or a store, try to get the child away from other people by taking him/her out of the crowded place. The confusion of having people around only makes matters worse, and the child doesn’t need any extra witnesses to the meltdown.
J-JUST BREATHE: As upsetting as watching a child having meltdowns can be, the good news is that they rarely last that long. Remaining calm will help the child regain composure, and the anxiety will pass.
Hopefully, these suggestions can help others dealing with autism meltdowns. As we wait for Alex to get over his irritation regarding Monopoly Junior and hope that he doesn’t come up with a new source of annoyance, I pray for patience for Ed and me and peace for Alex so that we no longer need to use these tactics to calm him.
“For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah 3:17
Once a meltdown has subsided, I always go into scientist mode, analyzing what might have aggravated Alex. Was it something he ate? Do his supplements or medications need tweaking? Is he not feeling well? Did I say something to annoy him? Is the pollen count high? Is there a change in air pressure? Most of the time, we have no definitive answers about what upsets Alex, but through experience over the years, we have become pretty adept at handling him when he is agitated. If any good can come of these recent meltdowns, perhaps I can share our first-hand experience in hopes that parents, teachers, or others who deal with children with autism can benefit from what we’ve learned. Since I like to organize information in a way that is easy to remember, I’ve decided to share my top ten autism meltdown management tips using alphabetical clues.
A-ANXIETY: I’m convinced that meltdowns are anxiety attacks in which the child reverts to fight-or-flight behavior. Alex takes the fight route, primarily in the form of verbal aggression, but he can be physically aggressive, as well. The shaking of his hands indicates excess adrenaline to me, and since I have often dealt with the flight form in my own anxiety attacks, I know that the anxiety can be overwhelming.
B-BEHAVIOR: The child is not deliberately being bad or defiant; he/she truly can’t help his/her actions. Therefore, punishment is not appropriate. Alleviating the source of the anxiety should be the only objective for the adult who is caring for the child.
C-CALM: The more upset the child is, the more important it is for the adult to remain calm. When the child is yelling or physically attacking, keeping one’s composure is not easy. However, the adult must not add to the child’s anxiety by yelling back.
D-DON’T ARGUE: No matter what ridiculous things the child says, do not try to convince him/her of how wrong those words are. In fact, it’s best to say as little as possible and allow the child to relieve stress by verbalizing any concerns. If the adult must talk, only help and positive comments should be offered.
E-ELIMINATE: If possible, eliminate any triggers that are upsetting the child. For example, if the child is mad about a puzzle he/she can’t solve, remove it from his/her sight until the storm has passed. If the child is bothered by sensory issues, such as the humming of an air vent or the noise of a computer printer, move him/her away from these distractions.
F-FRUSTRATION: Frustration often leads to anxiety, which leads to meltdowns. If the child seems overwhelmed, give him/her a break or encouragement. Sometimes perfectionism will make the child be too hard on himself/herself; other times pushing the child too hard can be overwhelming. Watch for signs that the child is being pushed too hard, either from internal or external sources.
G-GIVE SPACE: If the child is upset, don’t stand over him/her, which may cause more agitation. Also, for one’s own safety, keep out of striking or kicking range.
H-HANDS OFF: Once the child is in meltdown mode, do not touch or restrain the child unless for safety reasons because touch can escalate the anxiety. Children who are sensory defensive often become upset, rather than calmed by being touched.
I-ISOLATE: If the meltdown is happening in a public place, such as a classroom or a store, try to get the child away from other people by taking him/her out of the crowded place. The confusion of having people around only makes matters worse, and the child doesn’t need any extra witnesses to the meltdown.
J-JUST BREATHE: As upsetting as watching a child having meltdowns can be, the good news is that they rarely last that long. Remaining calm will help the child regain composure, and the anxiety will pass.
Hopefully, these suggestions can help others dealing with autism meltdowns. As we wait for Alex to get over his irritation regarding Monopoly Junior and hope that he doesn’t come up with a new source of annoyance, I pray for patience for Ed and me and peace for Alex so that we no longer need to use these tactics to calm him.
“For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah 3:17
Sunday, September 18, 2011
Alex's Research
As teachers and home schooling parents, Ed and I believe that one of the most valuable lessons we could teach Alex is that if you don’t know something, search for the answer. To that end, we’ve provided him over the years a wealth of reference books, including dictionaries, various almanacs, and textbooks. In addition, we’ve allowed him to have supervised access to the Internet, and he is a whiz at using search engines to locate information about topics of interest. When he was younger, he preferred the search engine Ask Jeeves (which later became Ask.com), but now he is a devotee of Google, probably because, through his extensive mathematical research, he actually knows what a googol is. When he was younger and would ask us questions we didn’t know, he would tell us emphatically, “Check it out!” or “Look it up!” Now that he’s mastered surfing the Internet by himself, he no longer has to rely upon us for information because he can check it out and look it up himself.
Lately, Alex has been more independent, spending time reading and researching on his own. In fact, he seems to resent intrusions on his solitude. If I walk into the room when he’s reading a book or working on his computer, he will ask me, “When are you leaving?” Sometimes he’s even more blunt and will simply suggest, “Mommy is leaving.” Although truthfully this hurts my feelings a little bit, I’m glad that he’s able to entertain himself while making good use of his time by learning. Nonetheless, the nosy mom in me has wondered what he’s researching, and, of course, he’s unlikely to share what he’s thinking. Thankfully, his computer offers wonderful insights into his thought processes, so yesterday I decided to see what secrets his laptop would reveal. Mind you, I don’t feel a bit guilty about spying on him this way because I think parents should check out what their teenagers are doing online to ensure their safety. A quick glance at Alex’s computer desktop revealed an interesting array of documents and applications he has downloaded. With his love of math, I’m never surprised to discover he’s been doing mathematical research. On his desktop currently is a calculator application that can determine the difference between two dates, and he has a document about how to calculate the day of the week for a given date. In addition, his love of pi continues, as evidenced by two documents on the desktop listing 10,000 digits of pi. Although he has memorized nearly 2,000 digits of pi, I suspect he may be working on learning even more of them. He also has a document about Jeopardy rules, which didn’t surprise me, considering what a big fan of this game show he is. Other items on his desktop require a bit more interpretation on my part as to his interests in them. For example, he has information about the Conservative magazine The Weekly Standard, and I’m guessing that he has heard about this periodical from seeing it advertised on Fox News, which he and Ed watch religiously. He has also downloaded a preschool enrollment form, which I think he liked because it requested information he finds vital: name, address, phone number, and ages of children. Other downloads reveal his fascination with calendars and dates. To illustrate, he has a document from the Kentucky Department of Education giving guidelines about how to set up a school year calendar. Another document I found gave me pause for thought: “Conference of Presidents Special Symposium to Bring Ahmadinejad to Justice for Incitement to Genocide.” While Alex follows the news, I couldn’t figure out what the appeal of this report held for him until I saw the date at the top of the page—December 16, 2006, his 15th birthday. Another dated download required some detective work on my part. He had a video entitled October 1970, and I wondered why he would find that date long before he was ever born interesting. A little calculation and speculation brings me to the conclusion that Ed, whose birthday is in October, turned 19 in 1970—the same age Alex is now.
After looking over his desktop downloads, I proceeded to his Internet browsing history to see what else he’s been researching lately. The most recent sites he’s visited reveal some varied interests. Continuing his affection for calendars, he found a site that has a 10,000 year calendar. He has also visited a free game site called Gas n’ Go, a simulation game where the player runs a gas station. Since Alex loves simulation games, such as Restaurant Empire and Monopoly Tycoon, I’m sure this game is right up his alley. Also, he studies trends in gas and oil prices; from following the stock market, he actually understands what influences the rise and fall of these prices. With his interest in the stock market and investments, his recent visit to the Harris Bank website makes sense to me. In fact, the only baffling link I found was his visit to the Growing Up Forum, where a mother had posted concerns about how her nine-year-old would cope with a the new baby in the family. I’m guessing that Alex’s only curiosity here was the mention of the age of the older child and perhaps relief that as an only child, he never had to cope with a new baby in our house. From there, I investigated Alex’s most-visited websites, all of which reflect his favorite topics and interests: Google, Google Images, You Tube, 314 Digits of Pi, Factorial Number Generator, Alexander and Baldwin Price (his favorite stock to follow because its abbreviation is ALEX), and J! Archive (a fan-generated archive of Jeopardy games and players). In surveying Alex’s history on the computer, I’m pleased that he has such a natural curiosity as well as access to the Internet to satisfy his desire to learn and gain knowledge about topics he finds engaging.
“For wisdom will enter your heart, and knowledge will fill you with joy.” Proverbs 2:10
Lately, Alex has been more independent, spending time reading and researching on his own. In fact, he seems to resent intrusions on his solitude. If I walk into the room when he’s reading a book or working on his computer, he will ask me, “When are you leaving?” Sometimes he’s even more blunt and will simply suggest, “Mommy is leaving.” Although truthfully this hurts my feelings a little bit, I’m glad that he’s able to entertain himself while making good use of his time by learning. Nonetheless, the nosy mom in me has wondered what he’s researching, and, of course, he’s unlikely to share what he’s thinking. Thankfully, his computer offers wonderful insights into his thought processes, so yesterday I decided to see what secrets his laptop would reveal. Mind you, I don’t feel a bit guilty about spying on him this way because I think parents should check out what their teenagers are doing online to ensure their safety. A quick glance at Alex’s computer desktop revealed an interesting array of documents and applications he has downloaded. With his love of math, I’m never surprised to discover he’s been doing mathematical research. On his desktop currently is a calculator application that can determine the difference between two dates, and he has a document about how to calculate the day of the week for a given date. In addition, his love of pi continues, as evidenced by two documents on the desktop listing 10,000 digits of pi. Although he has memorized nearly 2,000 digits of pi, I suspect he may be working on learning even more of them. He also has a document about Jeopardy rules, which didn’t surprise me, considering what a big fan of this game show he is. Other items on his desktop require a bit more interpretation on my part as to his interests in them. For example, he has information about the Conservative magazine The Weekly Standard, and I’m guessing that he has heard about this periodical from seeing it advertised on Fox News, which he and Ed watch religiously. He has also downloaded a preschool enrollment form, which I think he liked because it requested information he finds vital: name, address, phone number, and ages of children. Other downloads reveal his fascination with calendars and dates. To illustrate, he has a document from the Kentucky Department of Education giving guidelines about how to set up a school year calendar. Another document I found gave me pause for thought: “Conference of Presidents Special Symposium to Bring Ahmadinejad to Justice for Incitement to Genocide.” While Alex follows the news, I couldn’t figure out what the appeal of this report held for him until I saw the date at the top of the page—December 16, 2006, his 15th birthday. Another dated download required some detective work on my part. He had a video entitled October 1970, and I wondered why he would find that date long before he was ever born interesting. A little calculation and speculation brings me to the conclusion that Ed, whose birthday is in October, turned 19 in 1970—the same age Alex is now.
After looking over his desktop downloads, I proceeded to his Internet browsing history to see what else he’s been researching lately. The most recent sites he’s visited reveal some varied interests. Continuing his affection for calendars, he found a site that has a 10,000 year calendar. He has also visited a free game site called Gas n’ Go, a simulation game where the player runs a gas station. Since Alex loves simulation games, such as Restaurant Empire and Monopoly Tycoon, I’m sure this game is right up his alley. Also, he studies trends in gas and oil prices; from following the stock market, he actually understands what influences the rise and fall of these prices. With his interest in the stock market and investments, his recent visit to the Harris Bank website makes sense to me. In fact, the only baffling link I found was his visit to the Growing Up Forum, where a mother had posted concerns about how her nine-year-old would cope with a the new baby in the family. I’m guessing that Alex’s only curiosity here was the mention of the age of the older child and perhaps relief that as an only child, he never had to cope with a new baby in our house. From there, I investigated Alex’s most-visited websites, all of which reflect his favorite topics and interests: Google, Google Images, You Tube, 314 Digits of Pi, Factorial Number Generator, Alexander and Baldwin Price (his favorite stock to follow because its abbreviation is ALEX), and J! Archive (a fan-generated archive of Jeopardy games and players). In surveying Alex’s history on the computer, I’m pleased that he has such a natural curiosity as well as access to the Internet to satisfy his desire to learn and gain knowledge about topics he finds engaging.
“For wisdom will enter your heart, and knowledge will fill you with joy.” Proverbs 2:10
Wednesday, September 14, 2011
Releasing Tales
Over the years, my friends and family have encouraged me to write a book about our experiences with autism. Although the task of writing a book is still too daunting for me, I decided instead to start writing essays that have become blog entries for One Autism Mom’s Notes. The positive feedback I have received from readers of the blog has been gratifying and encouraging, and I am always amazed to check my stats page and see that people around the world are reading the entries I have written about our life with Alex and autism. This past week, I received some good news about my essays being published in two different places this month.
In April, Parents magazine requested submissions of essays about family life with autism as a special feature called "Voices of Autism" during Autism Awareness Month for their online GoodyBlog. I decided to submit “Milestones” and was pleased to see that they published this essay from my blog on their blog on Good Friday this year. This summer, one of their editors contacted me and requested permission to reprint the same essay online as part of their October tablet edition along with a photograph of Alex and me. Their October magazine that came out this week features a good comprehensive article on autism along with a terrific family profile written by one of my favorite bloggers, Lynn Hudoba. While my essay “Milestones” does not appear in the print edition of the magazine, they have included it as a bonus feature on the tablet edition, which is available on iPad, Android devices, and Nook Color. Since we don’t have any of those electronic toys, I haven’t seen it yet, but I’m honored that they decided to include my essay as part of their autism coverage.
In addition to the publication on the tablet edition of Parents magazine this week, yesterday I received notification that an anthology called Wit and Wisdom From the Parents of Special Needs Kids, which includes a new essay I wrote about Alex’s birth, will be released on September 27, and will be available through Amazon.com. This book is the brainchild of “Autism Army Mom” Lynn Hudoba and another one of my favorite bloggers, “Big Daddy” of Big Daddy Autism. Several months ago, they contacted me and asked if I would be interested in submitting a never-published essay for this special collection, and I was pleased to hear from them this summer that my essay, “Expecting the Unexpected,” would be included in this anthology. Needless to say, I’m excited that our stories are being shared with others through Parents magazine and the new book, and I pray that my words can offer hope and encouragement to those families and friends whose lives have been touched by autism.
“Let everything you say be good and helpful, so that your words will be an encouragement to those who hear them.” Ephesians 4:29
In April, Parents magazine requested submissions of essays about family life with autism as a special feature called "Voices of Autism" during Autism Awareness Month for their online GoodyBlog. I decided to submit “Milestones” and was pleased to see that they published this essay from my blog on their blog on Good Friday this year. This summer, one of their editors contacted me and requested permission to reprint the same essay online as part of their October tablet edition along with a photograph of Alex and me. Their October magazine that came out this week features a good comprehensive article on autism along with a terrific family profile written by one of my favorite bloggers, Lynn Hudoba. While my essay “Milestones” does not appear in the print edition of the magazine, they have included it as a bonus feature on the tablet edition, which is available on iPad, Android devices, and Nook Color. Since we don’t have any of those electronic toys, I haven’t seen it yet, but I’m honored that they decided to include my essay as part of their autism coverage.
In addition to the publication on the tablet edition of Parents magazine this week, yesterday I received notification that an anthology called Wit and Wisdom From the Parents of Special Needs Kids, which includes a new essay I wrote about Alex’s birth, will be released on September 27, and will be available through Amazon.com. This book is the brainchild of “Autism Army Mom” Lynn Hudoba and another one of my favorite bloggers, “Big Daddy” of Big Daddy Autism. Several months ago, they contacted me and asked if I would be interested in submitting a never-published essay for this special collection, and I was pleased to hear from them this summer that my essay, “Expecting the Unexpected,” would be included in this anthology. Needless to say, I’m excited that our stories are being shared with others through Parents magazine and the new book, and I pray that my words can offer hope and encouragement to those families and friends whose lives have been touched by autism.
“Let everything you say be good and helpful, so that your words will be an encouragement to those who hear them.” Ephesians 4:29
Sunday, September 11, 2011
Recalling Tragedy
As we remember the tragic events of September 11, 2001, on this tenth anniversary, we recall what we were doing when we first heard the news. I was teaching my seventh grade English classes on that morning when my close friend Sharon came to find me between first and second periods to tell me that a plane had crashed into the World Trade Center. Knowing that Ed, a native New Yorker, had family who worked in Manhattan, she was concerned about my in-laws and knew I would want to make certain they were all right with a call home to Ed. Not wanting to tie up the phone lines in case Ed was trying to get ahold of his sister and brother, I decided to wait to call him until the break between my next two classes. During the next class, my principal brought me a written message that he was hand delivering to all staff members. In capital letters at the top of the note read the following statement: “DO NOT SHARE WITH STUDENTS!” Trying not to register any emotion, I quickly scanned the rest of the note detailing the planes crashing into both of the World Trade Towers as well as into the Pentagon. Moreover, the note stated that one of the Twin Towers had collapsed. Saying a silent prayer, I somehow calmly taught my students a lesson on punctuation. After that class, I ran to the library, where I knew I would find the comfort of my friend Sharon and hoped to find more news on what had happened.
A quick phone call home to Ed reassured me that he and Alex were fine, and he had been able to ascertain that his brother and his sister’s husband, both of whom worked in New York City, were thankfully safe. Our next concern was how Alex was going to react to the constant barrage of news reports detailing the horrible series of events. We weren’t sure how much he comprehended in his nine-year-old mind impacted by autism. Despite his deficits in social skills, other people’s tears and sorrow have always moved Alex, and we worried that the outpouring of emotion shown on the news would overwhelm him. In addition, we thought that he might be upset because the news coverage interrupted his regular television viewing schedule. He was likely to be more upset by missing The Price Is Right than he was to be upset by the news of the terrorist attacks. Fortunately, he handled the changes better than we expected and did not seem to be agitated by the news broadcasts we had on the television as we were trying to make sense of what had happened.
Despite my upset and fears, I knew we had to discuss with Alex calmly what had happened that day so that he could process it. At the same time, I didn’t want him to have fears that would haunt him in the future, such as being afraid to fly on an airplane or to go in a skyscraper. I had once read that children with autism live in constant fear, and we have always tried to make Alex feel safe, so that he didn’t live in fear. I really don’t think that fear is a constant in Alex’s life because the only things he seems to fear are lightning (probably because I had once told him that he couldn’t go play outside since there was lightning that could strike and kill him—that warning resonated with him) and getting water in his eyes (I take no blame for that one.). He really doesn’t seem overly afraid of anything else, and I hope that’s because he trusts that Ed and I, with God's help, will keep him safe, as we have always done throughout his life. That evening, I asked him if he knew what had happened in New York, and he told me, “Yes, the big buildings fell down.” He didn’t seem to want to talk about it any more than that, and his matter-of-fact nature made us realize that he wasn’t overwhelmed by fear or by what he had seen on the news, and we were thankful that he handled the news calmly. With his vivid visual memory, I’m sure that Alex carries images of September 11th, as we all do—the day when “the big buildings fell down.” Maybe some day he’ll fully comprehend the magnitude of the day’s events, but until he can, I’m thankful that he feels safe and doesn’t allow fear to take any control in his life.
“For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” 2 Timothy 1:7
A quick phone call home to Ed reassured me that he and Alex were fine, and he had been able to ascertain that his brother and his sister’s husband, both of whom worked in New York City, were thankfully safe. Our next concern was how Alex was going to react to the constant barrage of news reports detailing the horrible series of events. We weren’t sure how much he comprehended in his nine-year-old mind impacted by autism. Despite his deficits in social skills, other people’s tears and sorrow have always moved Alex, and we worried that the outpouring of emotion shown on the news would overwhelm him. In addition, we thought that he might be upset because the news coverage interrupted his regular television viewing schedule. He was likely to be more upset by missing The Price Is Right than he was to be upset by the news of the terrorist attacks. Fortunately, he handled the changes better than we expected and did not seem to be agitated by the news broadcasts we had on the television as we were trying to make sense of what had happened.
Despite my upset and fears, I knew we had to discuss with Alex calmly what had happened that day so that he could process it. At the same time, I didn’t want him to have fears that would haunt him in the future, such as being afraid to fly on an airplane or to go in a skyscraper. I had once read that children with autism live in constant fear, and we have always tried to make Alex feel safe, so that he didn’t live in fear. I really don’t think that fear is a constant in Alex’s life because the only things he seems to fear are lightning (probably because I had once told him that he couldn’t go play outside since there was lightning that could strike and kill him—that warning resonated with him) and getting water in his eyes (I take no blame for that one.). He really doesn’t seem overly afraid of anything else, and I hope that’s because he trusts that Ed and I, with God's help, will keep him safe, as we have always done throughout his life. That evening, I asked him if he knew what had happened in New York, and he told me, “Yes, the big buildings fell down.” He didn’t seem to want to talk about it any more than that, and his matter-of-fact nature made us realize that he wasn’t overwhelmed by fear or by what he had seen on the news, and we were thankful that he handled the news calmly. With his vivid visual memory, I’m sure that Alex carries images of September 11th, as we all do—the day when “the big buildings fell down.” Maybe some day he’ll fully comprehend the magnitude of the day’s events, but until he can, I’m thankful that he feels safe and doesn’t allow fear to take any control in his life.
“For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” 2 Timothy 1:7
Wednesday, September 7, 2011
Pointers
With students all over the country going back to school, stories have arisen in the media lately about special needs children being punished for their outbursts by being excluded from educational services the law demands they be provided. In Texas, a six-year-old special needs student was kicked off a school bus and left near a busy intersection. Details of what happened remain unclear, as he apparently can’t explain what led to a bus driver placing him in a potentially dangerous situation. In Florida, a six-year-old girl with autism and attention deficit hyperactivity disorder was expelled on the first day of school from a charter school specifically designed to meet the needs to children with behavioral issues; allegedly she screamed, bit, and hit the teacher. These stories, as well as those told by my friends whose children with autism have been suspended from school because of their behavior, make me thankful that we were able to homeschool Alex throughout his school years. We could address any concerns at home without the interference of school personnel, who should be equipped to handle behavioral issues of special needs children.
Unfortunately, many people working with children who have autism are not well trained in dealing with outbursts. Instead of recognizing behaviors as likely resulting from anxiety, they may handle the child as simply being defiant or uncooperative, restraining the child and/or punishing with exclusion or suspension from school. As the number of children with autism increases due to the autism epidemic, poor training of personnel who work with these children is no longer an option. Several years ago, the special education department at the school where I teach seventh grade English on a part-time basis brought in a supervisor to give an in-service meeting regarding how to handle children with autism. When he began his talk mentioning “refrigerator mothers” (which he admitted was a theory that had been refuted), I knew he was not the person to be teaching others about autism. As he talked, my colleague friends kept watching for my reaction to what he said. Since I don’t have a good poker face, I’m sure my disagreement with some of his comments was evident. Realizing that he noticed my fellow teachers gauging my facial expressions in response to his remarks, I explained to him that I have a son with autism and that my friends were trying to see if I agreed with the information he was presenting. Undaunted, he went on with his talk that was mostly factually accurate but actually offered little insight in terms of how to work with children with autism. I doubt he really knew; I wouldn’t have known, had it not been for living with Alex and learning to handle his outbursts over time. Perhaps if more school personnel learned how to deal better with autism meltdowns, fewer children would be suspended or expelled from school.
Over the summer, I became fascinated with a television show on National Geographic Channel called Dog Whisperer in which dog trainer, or whisperer, Cesar Millan works with badly behaved dogs that exhibit aggressive or anxious behaviors. I found his insights into dog psychology interesting as he explained why certain dogs acted as they did. In retraining the dogs, he had three rules for the humans when first interacting with the dogs: “No touching, no talking, no eye contact.” After thinking about those rules, I realized that they would also apply when dealing with children who are having meltdowns. Mind you, comparing an upset child with autism to a badly behaved dog may seem harsh, but I suspect both are engaged in the “fight or flight” instincts when they are highly agitated. With Alex, we found that touching him during a meltdown, whether to restrain him gently or to try calming him with a touch, can make him more agitated and aggressive. Hence, the “No touching” rule is a good start. For a child with extreme tactile sensitivity, even a gentle touch may be perceived as a threat and lead to that child reacting with physical aggression, such as hitting or kicking. The second suggestion, “No talking,” needs some modification when dealing with the upset child. We have found that allowing Alex to express his fears, anxiety, and/or anger verbally is necessary to resolve his agitation, and we need to listen to what he’s saying. Once we let him talk, we can then reassure him verbally; however, we must be calm, quiet, and positive and never argumentative in doing so. When a child is screaming, maintaining composure is not an easy task. Once we convey that we know Alex is upset and that we’re willing to help him deal with whatever the source of his frustration may be, he usually begins to settle down. Even the wording of our comments must be careful. For example, if we ask him what the problem is, he will likely become more agitated. If instead we say something reassuring such as, “We will help you,” he’s more amenable to our attempts to soothe him. The last rule about no eye contact also works because we find it more important to watch Alex’s hands as a judge of how he’s responding to the anxiety. As he calms, his hands stop shaking, and we know he’s back to his old self. In addition, we watch his hands to make certain he’s not ready to hurl something in anger or use them to attack us physically. Dealing with an anxious, aggressive child with autism can be upsetting and difficult. However, if the three basic tenets of “No touching, no talking, no eye contact” were utilized instead of “pouring gasoline onto fires” by upsetting the child even more, I truly believe fewer children with autism would exhibit behaviors leading to suspension or expulsion from school. It’s certainly worth a try.
“The Lord says, ‘I will guide you along the best pathway for your life. I will advise you and watch over you.’” Psalm 32:8
Unfortunately, many people working with children who have autism are not well trained in dealing with outbursts. Instead of recognizing behaviors as likely resulting from anxiety, they may handle the child as simply being defiant or uncooperative, restraining the child and/or punishing with exclusion or suspension from school. As the number of children with autism increases due to the autism epidemic, poor training of personnel who work with these children is no longer an option. Several years ago, the special education department at the school where I teach seventh grade English on a part-time basis brought in a supervisor to give an in-service meeting regarding how to handle children with autism. When he began his talk mentioning “refrigerator mothers” (which he admitted was a theory that had been refuted), I knew he was not the person to be teaching others about autism. As he talked, my colleague friends kept watching for my reaction to what he said. Since I don’t have a good poker face, I’m sure my disagreement with some of his comments was evident. Realizing that he noticed my fellow teachers gauging my facial expressions in response to his remarks, I explained to him that I have a son with autism and that my friends were trying to see if I agreed with the information he was presenting. Undaunted, he went on with his talk that was mostly factually accurate but actually offered little insight in terms of how to work with children with autism. I doubt he really knew; I wouldn’t have known, had it not been for living with Alex and learning to handle his outbursts over time. Perhaps if more school personnel learned how to deal better with autism meltdowns, fewer children would be suspended or expelled from school.
Over the summer, I became fascinated with a television show on National Geographic Channel called Dog Whisperer in which dog trainer, or whisperer, Cesar Millan works with badly behaved dogs that exhibit aggressive or anxious behaviors. I found his insights into dog psychology interesting as he explained why certain dogs acted as they did. In retraining the dogs, he had three rules for the humans when first interacting with the dogs: “No touching, no talking, no eye contact.” After thinking about those rules, I realized that they would also apply when dealing with children who are having meltdowns. Mind you, comparing an upset child with autism to a badly behaved dog may seem harsh, but I suspect both are engaged in the “fight or flight” instincts when they are highly agitated. With Alex, we found that touching him during a meltdown, whether to restrain him gently or to try calming him with a touch, can make him more agitated and aggressive. Hence, the “No touching” rule is a good start. For a child with extreme tactile sensitivity, even a gentle touch may be perceived as a threat and lead to that child reacting with physical aggression, such as hitting or kicking. The second suggestion, “No talking,” needs some modification when dealing with the upset child. We have found that allowing Alex to express his fears, anxiety, and/or anger verbally is necessary to resolve his agitation, and we need to listen to what he’s saying. Once we let him talk, we can then reassure him verbally; however, we must be calm, quiet, and positive and never argumentative in doing so. When a child is screaming, maintaining composure is not an easy task. Once we convey that we know Alex is upset and that we’re willing to help him deal with whatever the source of his frustration may be, he usually begins to settle down. Even the wording of our comments must be careful. For example, if we ask him what the problem is, he will likely become more agitated. If instead we say something reassuring such as, “We will help you,” he’s more amenable to our attempts to soothe him. The last rule about no eye contact also works because we find it more important to watch Alex’s hands as a judge of how he’s responding to the anxiety. As he calms, his hands stop shaking, and we know he’s back to his old self. In addition, we watch his hands to make certain he’s not ready to hurl something in anger or use them to attack us physically. Dealing with an anxious, aggressive child with autism can be upsetting and difficult. However, if the three basic tenets of “No touching, no talking, no eye contact” were utilized instead of “pouring gasoline onto fires” by upsetting the child even more, I truly believe fewer children with autism would exhibit behaviors leading to suspension or expulsion from school. It’s certainly worth a try.
“The Lord says, ‘I will guide you along the best pathway for your life. I will advise you and watch over you.’” Psalm 32:8
Sunday, September 4, 2011
Pride
As I’ve mentioned in previous blog entries, Alex loves to grocery shop at Wal-Mart; in fact, pushing a cart down the crowded aisles is one of his favorite things to do. With just a little guidance from Ed or me, he somehow easily navigates around displays, people chatting on their cell phones as they stand in the middle of the aisles, and carts thoughtless shoppers have left blocking pathways. Despite these various irritations, Alex remains constantly cheerful, keeping a smile on his face the entire time. Watching him stroll confidently down the busy aisles, all the while staying out of other people’s way, I feel a pride that he has mastered an accomplishment most of his fellow Wal-Mart shoppers have not. In fact, I’ve half-kiddingly thought about having a bumper sticker made that reads, “My autistic kid pushes a grocery cart better than you do!”
A couple of evenings ago, we stopped by Alex’s favorite fun park, I mean, favorite grocery store to pick up the type of ham he likes to eat for breakfast. Since we were only getting the one item, we didn’t need a cart, but Alex still managed to stay out of other people’s way as he walked through the store. He has a habit of holding his hands up near his chest when he walks, which is probably a sensory or balance issue, or may just be a teenage self-conscious one since he’s so tall and lanky and doesn’t seem comfortable with his long limbs. Ed has been working with him this summer to try to get him to keep his arms down as he walks so that his gait looks more typical. Over the past several weeks, Alex has gotten better about keeping his hands at his sides, and he’s very cooperative about putting his hands down when gently reminded with the cue word, “Arms.” Without the cart to push, Alex’s hands went up to his chest, and as soon as we picked out the ham, we gave it to him to carry so that he would have something to put in his hands. Trotting through the store with an ear-to-ear grin, Alex looked as if he were carrying a trophy instead of a ham, which reminded me of a funny family story from my childhood. One time when we were visiting my grandfather, he wanted to give us a canned ham to take home. Because we were riding the train home, my mother explained that there was no good way to transport the ham. Undaunted, my grandfather suggested that my brother, who was probably about ten years old at the time, could carry the ham on the train. My mother explained that he wouldn’t want to carry it, to which my grandfather earnestly replied, “Why, he’d be proud to be carrying a ham!” This has become a joke in the family, as we have asked each other through the years in jest, “Were you as proud as if you’d been carrying a ham?” My cousin Beth tells this story best because she punctuates the details with an infectious giggle. Anyway, as I watched Alex carry that ham through Walmart, I finally understood what my grandfather, whom we called Paw Paw, meant about carrying a ham with pride. I think Paw Paw would have enjoyed watching Alex carry that ham proudly as much as Ed and I did.
While Alex has learned to maneuver the cart through the crowded store, Ed and I have developed a well-choreographed routine after we’ve checked out the groceries to get the food and Alex into the car quickly and efficiently. Last week, Ed commented that he and I were like members of a racecar pit crew the way we assume certain responsibilities in loading Alex and the groceries cooperatively with speed while staying out of each other’s way. Like the racecar driver, Alex pulls the cart into the pit stall, that is, up to the hatchback of our station wagon, which Ed opens. Then, I as the jack man, cue Alex when to go, making sure he is safely secured in his seat. Next, I run around to the back of the car to help Ed, the gas man, load the car with the fuel (i.e. our food for a few days), putting the groceries in the back of the car. Once he’s emptied the gas can, or grocery cart, I take the cart to the corral as he shuts the hatchback, and we quickly get in our seats and get ready to leave. Even though we can’t complete our tasks in less than fifteen seconds, as actual pit crews do, we’re fairly proud of how well we work together getting the job done so that Alex doesn’t have to wait too long for us to get rolling and on the road—almost as proud as if we were carrying a ham, that is.
“Yes, you are our pride and joy.” I Thessalonians 2:20
A couple of evenings ago, we stopped by Alex’s favorite fun park, I mean, favorite grocery store to pick up the type of ham he likes to eat for breakfast. Since we were only getting the one item, we didn’t need a cart, but Alex still managed to stay out of other people’s way as he walked through the store. He has a habit of holding his hands up near his chest when he walks, which is probably a sensory or balance issue, or may just be a teenage self-conscious one since he’s so tall and lanky and doesn’t seem comfortable with his long limbs. Ed has been working with him this summer to try to get him to keep his arms down as he walks so that his gait looks more typical. Over the past several weeks, Alex has gotten better about keeping his hands at his sides, and he’s very cooperative about putting his hands down when gently reminded with the cue word, “Arms.” Without the cart to push, Alex’s hands went up to his chest, and as soon as we picked out the ham, we gave it to him to carry so that he would have something to put in his hands. Trotting through the store with an ear-to-ear grin, Alex looked as if he were carrying a trophy instead of a ham, which reminded me of a funny family story from my childhood. One time when we were visiting my grandfather, he wanted to give us a canned ham to take home. Because we were riding the train home, my mother explained that there was no good way to transport the ham. Undaunted, my grandfather suggested that my brother, who was probably about ten years old at the time, could carry the ham on the train. My mother explained that he wouldn’t want to carry it, to which my grandfather earnestly replied, “Why, he’d be proud to be carrying a ham!” This has become a joke in the family, as we have asked each other through the years in jest, “Were you as proud as if you’d been carrying a ham?” My cousin Beth tells this story best because she punctuates the details with an infectious giggle. Anyway, as I watched Alex carry that ham through Walmart, I finally understood what my grandfather, whom we called Paw Paw, meant about carrying a ham with pride. I think Paw Paw would have enjoyed watching Alex carry that ham proudly as much as Ed and I did.
While Alex has learned to maneuver the cart through the crowded store, Ed and I have developed a well-choreographed routine after we’ve checked out the groceries to get the food and Alex into the car quickly and efficiently. Last week, Ed commented that he and I were like members of a racecar pit crew the way we assume certain responsibilities in loading Alex and the groceries cooperatively with speed while staying out of each other’s way. Like the racecar driver, Alex pulls the cart into the pit stall, that is, up to the hatchback of our station wagon, which Ed opens. Then, I as the jack man, cue Alex when to go, making sure he is safely secured in his seat. Next, I run around to the back of the car to help Ed, the gas man, load the car with the fuel (i.e. our food for a few days), putting the groceries in the back of the car. Once he’s emptied the gas can, or grocery cart, I take the cart to the corral as he shuts the hatchback, and we quickly get in our seats and get ready to leave. Even though we can’t complete our tasks in less than fifteen seconds, as actual pit crews do, we’re fairly proud of how well we work together getting the job done so that Alex doesn’t have to wait too long for us to get rolling and on the road—almost as proud as if we were carrying a ham, that is.
“Yes, you are our pride and joy.” I Thessalonians 2:20
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