This week there has been a lot of talk about an article in Time (http://healthland.time.com/2011/08/19/could-the-way-we-mate-and-marry-boost-rates-of-autism/) that looks at the possibility of 'clusters' of Autism in general and Asperger's in particular around technical business centers or hi-tech university alumni. This isn't the first time I've heard about this, but one of the first I've seen it discussed in mainstream press. I was forwarded the Time article by at least 3 people and this was a topic of discussion at a birthday party yesterday.
For those who haven't been following the stories, the question about where Autism and Aspeger's is growing is related to how the parents of these children are meeting and mating. One of the stranger arguments is that since women are now in the math, science and engineering fields they are meeting more men and are marrying and having children. And these children have an increase incidence of Autism because the parents are technically or process inclined. In the Time article they talk about the number of children of MIT graduates who are Autistic. Another article earlier in the spring talked about clusters of Autistic children around Huntsville, Alabama (Rocket City, where a lot of the NASA engineers live and work over the last 50 years) and Eindhoven, Netherlands, the Dutch Silicon Valley.
The articles point out that in the last 50 years (last 20 specifically) it has become socially acceptable to be an engineer or 'geek'. The pay in these industries can be significantly higher than others as well. All of which leads to the premise that the 'geeks' are now able to attract mates that traditionally hadn't been available to them. And this attraction is leading to the increase in Autism since more 'carriers' are 'being allowed' to mate than any other time. In case you missed it, the 'carriers' are the geeks, male and female. Stretching it a little, the geeks and spinsters of the 1800's and first part of the 20th century couldn't attract mates, so the 'chance' of having an Autistic child were low, now that there are places for them to meet, or the socioeconomic changes mean it is now okay to marry them so the rates of incidence are increasing.
This research strongly suggests (but doesn't scientifically prove) that Autism and Asperger's is genetic. Like many diseases where both parents need to be carriers to trigger a recessive trait, is it possible that Autism is recessive? Or when the combination of the strong, but not indicative traits of Autism in engineers, mathematicians and other 'geeks', combines with some genes in our mates to cause this?
I don't know and expect to see a lot more research into this, but it does kind of make sense. The number of parents we've met in our travels with Christopher suggest that a lot of them (or both) are 'geeky' like I am. And not just engineers, programmers etc, but parents who were 'gifted and talented' or excelled in school to become lawyers and doctors.
Honestly, I don't know how I feel about this. At one level it is nice to hear they are making progress in identifying what causes his Autism, but at the same time it points to me being the reason. (I know, I'm reading too much into this, so please no calls from family ;). It also suggests that new parents with 'geeky' or 'gifted' backgrounds should have their children screened sooner to get jump on the treatments.
Showing posts with label christopher. Show all posts
Showing posts with label christopher. Show all posts
Sunday, August 28, 2011
Sunday, June 26, 2011
Book review: Be Different - adventures of a free range Aspergian
"Don't Self Diagnose!" was one of the first things I picked up when doing research into what could be going on with Christopher almost 3 years ago. It is really hard not to as you read about the behaviors of people actually diagnosed on the Autism Spectrum (ASD).
Reading this book certainly makes it hard not to. More about that later. First, my thoughts on this book.
"Be Different: Adventures of a Free-Range Aspergian" by John Elder Robison. This book is a series of stories and advice by a grown adult, probably in his late 40s or early 50's who was diagnosed with Asperger's syndrome when he was 40. It contains the stories of how he struggled through his education, teen years and first part of his life as an adult. He also points out some of the things that made him very successful in several different, very disparate fields. Everything from 'tuning' bicycles as a kid to custom electronics for music to specialized auto repair.
It is a fascinating story of his life experiences and how he can now associate them back to his Aspergian brain. In more than a few parts you can't help to feel sorry for him, and the later cheer him for not giving up or letting his 'diagnosis' define who he is. Even if you don't know someone with Aspergian's it is an interesting story to read. You'll be amazed how many things he associates with Aspergian's that we do ourselves or have known others to do as we grew up.
This book is also apparently where the term 'nypical' came from. I came across this term many times but never knew why/where it came from. Basically the author doesn't like calling someone 'normal' or 'typical' because no one really is. So he calls them 'nypical'.
The sections about how Apergian's can't read facial expressions, tone of voice etc were very interesting to read. I had to stop a few times and try to wonder what that would have been like.
Since we still don't know what exactly to call Christopher's challenges, I read this book in hopes of seeing and understanding what is going on with him. (Asperger's probably isn't one of them because of his language issues. Asperger's is often characterized by the strong, almost intense vocabularies. And the ability for those with the diagnosis to go on and on about one specific, obsessive topic.)
Back to my "Don't Self Diagnose" comment above. Reading this book it is really, really hard not to apply his stories to what happened to me as I grew up. But at the same time, many of the things he associates with his Asperger's seemed to happen to everyone growing up. In each chapter I can either see those things happening to me, my brothers or my friends. That being said, the vast majority of the people I get along with (brothers included) are like me, so I can't be sure that we all aren't suspects. (A whole other post will be about the recent research showing Autism clusters around hi-tech geographic areas. That one has me thinking A LOT)
For example, a huge number of the engineers I've met over the years, both hardware, software, mechanical, electrical etc. have made the same comment: I'm good at what I do because I can focus for a long period of time on something. As kids many of us got in trouble for doing this (I remember getting caught reading Star Wars in class, hiding it behind my regular book because I was obsessed with that story). In this book the author identifies this single, obsessive nature as a strength of Aspergian brains. Does that mean all of us who can focus (obsess?) on something for hours and days have Asperger's?
Another example, many people I've worked with, not just engineers but those drawn to a technical career have joked 'I have no idea how I ended up with'. Or their friends and family tease them about 'dating above their weight class'. (Or come up with interesting nick names for their girlfriends that are shots at me, not her.) The author of this book devotes an entire chapter to meeting women, the challenges and in the end he comes up with a basic premise: the women in his life have CHOSEN him. Nothing he did directly could have made them interested in him, they just became interested after getting to know him. (Also they exclusively made the first move) And that almost nothing he did in the relationships kept them around (which isn't the same as driving them away, more that his attempts at romance etc. fail miserably). They have decided that the benefits of being with him outweigh the quirks of him being Aspergian.
I'm still not sure how I feel about this observation. I think every guy jokes about wondering 'why she's still with me', but Deb was the one who approached me first, at a time where I had no idea what to do with girls and was failing miserably each time I tried... ;) And many of the wives/girlfriends over the years have joked(?) that they can deal with the quirks of us guys because of the other benefits.
One final thought about the book: The author ends with an interesting view of how things are different as an adult than when he was a kid. One of them hit home hard. When he was a kid he was teased, even by teachers, about his ability to become focused on something, learn about it very quickly and become an expert in a short period of time. As a kid he was 'odd' or 'nuts' (he uses 'nuts' to describe himself a lot in this book) and something to ridicule. As an adult he's seen as a fast learner and expert for the same qualities. I remember vividly being teased about my obsessions as a kid, but now how quickly I understand new things is called out regularly as one of my strengths.
So you can see why self diagnosis could be dangerous. And for the record I don't think I have Asperger's syndrome nor am I on the spectrum. I'm just a typical geek in the 21st century.
Reading this book certainly makes it hard not to. More about that later. First, my thoughts on this book.
"Be Different: Adventures of a Free-Range Aspergian" by John Elder Robison. This book is a series of stories and advice by a grown adult, probably in his late 40s or early 50's who was diagnosed with Asperger's syndrome when he was 40. It contains the stories of how he struggled through his education, teen years and first part of his life as an adult. He also points out some of the things that made him very successful in several different, very disparate fields. Everything from 'tuning' bicycles as a kid to custom electronics for music to specialized auto repair.
It is a fascinating story of his life experiences and how he can now associate them back to his Aspergian brain. In more than a few parts you can't help to feel sorry for him, and the later cheer him for not giving up or letting his 'diagnosis' define who he is. Even if you don't know someone with Aspergian's it is an interesting story to read. You'll be amazed how many things he associates with Aspergian's that we do ourselves or have known others to do as we grew up.
This book is also apparently where the term 'nypical' came from. I came across this term many times but never knew why/where it came from. Basically the author doesn't like calling someone 'normal' or 'typical' because no one really is. So he calls them 'nypical'.
The sections about how Apergian's can't read facial expressions, tone of voice etc were very interesting to read. I had to stop a few times and try to wonder what that would have been like.
Since we still don't know what exactly to call Christopher's challenges, I read this book in hopes of seeing and understanding what is going on with him. (Asperger's probably isn't one of them because of his language issues. Asperger's is often characterized by the strong, almost intense vocabularies. And the ability for those with the diagnosis to go on and on about one specific, obsessive topic.)
Back to my "Don't Self Diagnose" comment above. Reading this book it is really, really hard not to apply his stories to what happened to me as I grew up. But at the same time, many of the things he associates with his Asperger's seemed to happen to everyone growing up. In each chapter I can either see those things happening to me, my brothers or my friends. That being said, the vast majority of the people I get along with (brothers included) are like me, so I can't be sure that we all aren't suspects. (A whole other post will be about the recent research showing Autism clusters around hi-tech geographic areas. That one has me thinking A LOT)
For example, a huge number of the engineers I've met over the years, both hardware, software, mechanical, electrical etc. have made the same comment: I'm good at what I do because I can focus for a long period of time on something. As kids many of us got in trouble for doing this (I remember getting caught reading Star Wars in class, hiding it behind my regular book because I was obsessed with that story). In this book the author identifies this single, obsessive nature as a strength of Aspergian brains. Does that mean all of us who can focus (obsess?) on something for hours and days have Asperger's?
Another example, many people I've worked with, not just engineers but those drawn to a technical career have joked 'I have no idea how I ended up with
I'm still not sure how I feel about this observation. I think every guy jokes about wondering 'why she's still with me', but Deb was the one who approached me first, at a time where I had no idea what to do with girls and was failing miserably each time I tried... ;) And many of the wives/girlfriends over the years have joked(?) that they can deal with the quirks of us guys because of the other benefits.
One final thought about the book: The author ends with an interesting view of how things are different as an adult than when he was a kid. One of them hit home hard. When he was a kid he was teased, even by teachers, about his ability to become focused on something, learn about it very quickly and become an expert in a short period of time. As a kid he was 'odd' or 'nuts' (he uses 'nuts' to describe himself a lot in this book) and something to ridicule. As an adult he's seen as a fast learner and expert for the same qualities. I remember vividly being teased about my obsessions as a kid, but now how quickly I understand new things is called out regularly as one of my strengths.
So you can see why self diagnosis could be dangerous. And for the record I don't think I have Asperger's syndrome nor am I on the spectrum. I'm just a typical geek in the 21st century.
Sunday, October 03, 2010
Special Needs Trusts
One of the stranger things all parents have to do is prepare their wills. Having a baby is often the first time most of us think about our mortality and what will happen if we were to die.
15 year ago, Deb and I did a will when Meghan was 6 months old. We didn't have a lot then (the bank owned 90% of that house then!) so the will was pretty basic and done through one of these boilerplate law offices. It covered the traditional 'and other children not yet alive' clauses so we didn't think about it much since then.
Similar concerns about life insurance. We bought it, we pay the premiums each month and I don't think much about it.
Then I read an article a couple of months ago about the realities of having an autistic child. As most wills are written, when the estate of the parents is closed, the money from the estate goes directly to the children.
Reality of autistic children though, is that additional money may DISQUALIFY them for some services. Most government services are based on the income level of the recipient (not necessarily the family) so a sudden influx of cash would remove services.
Worst case scenario is he would lose all his services for as long as the cash lasts, then go back (usually after a waiting period), with no income. Which is not what we want.
While we have no idea what Christopher's life is going to be in a year never mind 14 when he's 18, we do need to think about it.
The solution is what is called a special needs trust. When the estate is executed, the money for the child having special needs (not just autism, but anything unusual) is placed into a trust with an executor who decides when/how the money is used. The nice thing is this trust is NOT included in the income of the child, so any services are not lost.
Reading about this, and the realities of grown autistic children, I reached out to a friend to find a lawyer to help set one up.
However, nothing needed to be changed. The basic will had a clause that allowed the executor of the estate to decide if one of the recipients of the estate was not fit to receive the money, to establish a trust for him or her. Basically, the special needs trust for Christopher was already in place.
Even the lawyer was surprised, since he had never seen a generic will written in Georgia that had that clause.
15 year ago, Deb and I did a will when Meghan was 6 months old. We didn't have a lot then (the bank owned 90% of that house then!) so the will was pretty basic and done through one of these boilerplate law offices. It covered the traditional 'and other children not yet alive' clauses so we didn't think about it much since then.
Similar concerns about life insurance. We bought it, we pay the premiums each month and I don't think much about it.
Then I read an article a couple of months ago about the realities of having an autistic child. As most wills are written, when the estate of the parents is closed, the money from the estate goes directly to the children.
Reality of autistic children though, is that additional money may DISQUALIFY them for some services. Most government services are based on the income level of the recipient (not necessarily the family) so a sudden influx of cash would remove services.
Worst case scenario is he would lose all his services for as long as the cash lasts, then go back (usually after a waiting period), with no income. Which is not what we want.
While we have no idea what Christopher's life is going to be in a year never mind 14 when he's 18, we do need to think about it.
The solution is what is called a special needs trust. When the estate is executed, the money for the child having special needs (not just autism, but anything unusual) is placed into a trust with an executor who decides when/how the money is used. The nice thing is this trust is NOT included in the income of the child, so any services are not lost.
Reading about this, and the realities of grown autistic children, I reached out to a friend to find a lawyer to help set one up.
However, nothing needed to be changed. The basic will had a clause that allowed the executor of the estate to decide if one of the recipients of the estate was not fit to receive the money, to establish a trust for him or her. Basically, the special needs trust for Christopher was already in place.
Even the lawyer was surprised, since he had never seen a generic will written in Georgia that had that clause.
Sunday, August 29, 2010
Why I bought an iPad for my 4 year old
Back in mid-June I asked on twitter and Facebook if anyone had recommendations for a case for an iPad for a 4 year old. Very few people knew then that Christopher is PDD-NOS, so there were a few wise-ass comments, a few that questioned my sanity and a pointer to the Belkin case at Best Buy.
The first time I saw an iPad was at work where my boss bought one for the office to play with. I was fourth or fifth in line to get it, and loaded a couple of kids games on it before bringing it home for a long weekend. Much to my surprise, Christopher figured out how to use it immediately. He hadn't (and still doesn't) show any interest in the iPod touches the girls have so I didn't expect much. Boy was I wrong. Within a few minutes he knew how to open the games, close them, touch the screen, draw in the drawing app and navigate.
The weekend went by really quick, but one thing was clear, we needed to get one for Christopher. So I ordered one in June. The original idea was it would be Deb's and that Christopher would use it for educational games etc. Well, as those of you with kids can probably guess, that didn't happen ;-) The device was delayed in shipping, so I received it on a Friday, loaded it up with apps and Deb took it and the kids to Connecticut for their summer visit on Sunday. It would be almost 3 weeks before I saw him using it after the first day.
(FYI, I did come up with some ideas on how to use one in a business environment when 'playing' with the work one.)
While he was in Connecticut and Maryland visiting family, everyone commented on how well he used it and the ways he was interacting. They didn't have wifi in either place so the fun didn't start until they got home ...
The first thing we noticed the few days he was here, was he would interact with Talking Carl, tickling, yelling etc. which in July was very unusual. Then Christopher was mostly consuming media, not interacting with it.
One of his favorite games called '5 in 1' which has matching card games (think 8 or 16 cards face down, pick one and find it's match) using letters, numbers and animals. Not a week before the iPad arrived he wouldn't do something similar for his pediatrician, but he picked up on it pretty quickly. He now has another using Thomas characters but that's only 8 cards so he gets bored quickly with it.
The biggest investment at the time was a PECS card application called Grace App for Autism (http://graceappforautismoniphone.blogspot.com/) While technically not a PECS application (I think PECS is a name brand) it is an application that he can scroll through and find the picture cards to build a story strip to let us know what he wants. It was $35 which is pretty expensive for an application, but the first few weeks was pretty handy. One nice feature of the application is we can upload our own pictures to it, so I scanned all the ones we've made the previous 15 months and put them on it.
Christopher is talking a lot more now, but sometimes when he gets frustrated that we don't understand him he'll open that app and find the picture.
The iPad also came in handy when potty training. He's been very difficult to potty train, since he doesn't want to sit still for very long and can't really play with his trains or Legos on the toilet. One weekend in early August I sat him on the toilet, loaded up a movie on Netflix on the iPad and spent the whole weekend in the bathroom. We watched movies, played games and read stories (There is a really good Toy Story Disney book app that is free). By the end of the weekend he knew to go the bathroom on the toilet and we've pretty much stopped wearing pull ups during the day.
Except that now he wants the iPad exclusively to watch movies. So I logged out of Netflix automatically and told him it was broken. He seems to understand that so the drama stopped. Until someone showed him the YouTube application. You want a headache? Go to YouTube and search for "thomas the tank engine accidents happen". I don't know the story behind it, but basically it is videos of Thomas engines crashing to a song 'Accidents happen'.
Next huge drama was that those videos were all he wanted to do on the iPad, so I had to hide the app. Something good did come out of it though, he started mimicking some of the crashes using his trains, which is something he hadn't done before. So we're torn between him obsessing about those videos and how he's starting to mimic! (Also, there are some bizarre videos on YouTube about Thomas. He didn't know what to think when Thomas went into the shed and blew up the place because he was the mad bomber.)
Also, Christopher started ABA therapy in early August and his therapist is using the iPad for games, interactions etc. His therapist says it is a great tool for the things they need to do.
So yes, I bought my 4 year old an iPad. And so far it is one of the best 'non-traditional' thing we've done to help him.
The first time I saw an iPad was at work where my boss bought one for the office to play with. I was fourth or fifth in line to get it, and loaded a couple of kids games on it before bringing it home for a long weekend. Much to my surprise, Christopher figured out how to use it immediately. He hadn't (and still doesn't) show any interest in the iPod touches the girls have so I didn't expect much. Boy was I wrong. Within a few minutes he knew how to open the games, close them, touch the screen, draw in the drawing app and navigate.
The weekend went by really quick, but one thing was clear, we needed to get one for Christopher. So I ordered one in June. The original idea was it would be Deb's and that Christopher would use it for educational games etc. Well, as those of you with kids can probably guess, that didn't happen ;-) The device was delayed in shipping, so I received it on a Friday, loaded it up with apps and Deb took it and the kids to Connecticut for their summer visit on Sunday. It would be almost 3 weeks before I saw him using it after the first day.
(FYI, I did come up with some ideas on how to use one in a business environment when 'playing' with the work one.)
While he was in Connecticut and Maryland visiting family, everyone commented on how well he used it and the ways he was interacting. They didn't have wifi in either place so the fun didn't start until they got home ...
The first thing we noticed the few days he was here, was he would interact with Talking Carl, tickling, yelling etc. which in July was very unusual. Then Christopher was mostly consuming media, not interacting with it.
One of his favorite games called '5 in 1' which has matching card games (think 8 or 16 cards face down, pick one and find it's match) using letters, numbers and animals. Not a week before the iPad arrived he wouldn't do something similar for his pediatrician, but he picked up on it pretty quickly. He now has another using Thomas characters but that's only 8 cards so he gets bored quickly with it.
The biggest investment at the time was a PECS card application called Grace App for Autism (http://graceappforautismoniphone.blogspot.com/) While technically not a PECS application (I think PECS is a name brand) it is an application that he can scroll through and find the picture cards to build a story strip to let us know what he wants. It was $35 which is pretty expensive for an application, but the first few weeks was pretty handy. One nice feature of the application is we can upload our own pictures to it, so I scanned all the ones we've made the previous 15 months and put them on it.
Christopher is talking a lot more now, but sometimes when he gets frustrated that we don't understand him he'll open that app and find the picture.
The iPad also came in handy when potty training. He's been very difficult to potty train, since he doesn't want to sit still for very long and can't really play with his trains or Legos on the toilet. One weekend in early August I sat him on the toilet, loaded up a movie on Netflix on the iPad and spent the whole weekend in the bathroom. We watched movies, played games and read stories (There is a really good Toy Story Disney book app that is free). By the end of the weekend he knew to go the bathroom on the toilet and we've pretty much stopped wearing pull ups during the day.
Except that now he wants the iPad exclusively to watch movies. So I logged out of Netflix automatically and told him it was broken. He seems to understand that so the drama stopped. Until someone showed him the YouTube application. You want a headache? Go to YouTube and search for "thomas the tank engine accidents happen". I don't know the story behind it, but basically it is videos of Thomas engines crashing to a song 'Accidents happen'.
Next huge drama was that those videos were all he wanted to do on the iPad, so I had to hide the app. Something good did come out of it though, he started mimicking some of the crashes using his trains, which is something he hadn't done before. So we're torn between him obsessing about those videos and how he's starting to mimic! (Also, there are some bizarre videos on YouTube about Thomas. He didn't know what to think when Thomas went into the shed and blew up the place because he was the mad bomber.)
Also, Christopher started ABA therapy in early August and his therapist is using the iPad for games, interactions etc. His therapist says it is a great tool for the things they need to do.
So yes, I bought my 4 year old an iPad. And so far it is one of the best 'non-traditional' thing we've done to help him.
Tuesday, August 10, 2010
Book, Book, Book at 5:30 am
The little guy woke us up at 5:30 this morning. Why is that worthy of a blog post instead of a Facebook or Twitter update? Well, because he woke us up with a book. And he kept saying "book, book" over and over until Deb read it to him.
The last few days he's insisted that we read him the same book, each night and last night he went to sleep holding it. The book? The Berenstain Bears on the Moon. This is unusual because up to now he hasn't had a 'must read' book. He has some he likes us reading, but no 'must have' book before bed.
This got me thinking about other books that our kids made us read and books that have specific meanings at various times in our lives. I've been meaning to do this since the Spring. I even sent myself an email outlining this post ;-) I don't remember the trigger specifically, but I'm pretty sure it was something that Elizabeth Lynn Casey did. Who is Elizabeth Lynn Casey? She is the pseudonym for a woman I went to High School with. Turns out she paid attention in the various English classes and is pretty good author. She also has a really good blog here. (No she's not related to Deb, though Deb's maiden name is Casey and I'm pretty sure they knew each other in High School.)
Making good use of Social Media, Elizabeth has questions for her readers or answers questions about her writing almost every day. I can't find which post prompted this idea for me, but here goes. (If this is bad, its her fault ;-)
I don't remember reading books as a little kid, but I know I did read a lot. I distinctly remember going to the library several times with my Mom and that there were always books around our house. My first memory related to a book is reading an Erma Bombeck book and sharing one of the more funny passages with my Grandfather. Only to have him question my Dad about why I was reading things like that as a kid. It took a few more years before I could read things my parents had!
I remember reading Hardy Boys, Encyclopedia Brown, war stories, history and mysteries. I remember going through a Alistair MacClean and Agatha Christie phase and even reading all of Leon Uris' books as a teenager.
I also remember really clearly having my copy of Star Wars taken away by a teacher who caught me reading it in class instead of the science book. That was one of times my parents had the 'we're disappointed in you for doing it, but can't really punish you because it was a good thing to be doing' lectures. Yes there were many, many of those as a kid.
Throw in The Outsiders, That Was Then This is Now, Guadalcanal Diary and many of the fun "school" books and I was always reading.
The book that stands out the most for me in the Green Berets. It was the book I was reading when the really cute brunette 15 year old looked over the seat on the airplane and asked me what I was reading.
Skip ahead a bunch of years, the cute brunette and I had our first Daughter and started reading children's books. Meghan had two favorites, which we read to her every night. The first, Guess How Much I Love You we could recite in our sleep. And probably did a few times. The second was the Sandman. Being a good father I of course made the books fun. One of the pictures has Big Nut Brown Hare bending over to jump and I got Meghan to say 'he's pooping!' each time we got to that page!
Then Courtney came along and she liked the same books as Meghan, but really liked Good Night Moon and some annoying Barbie's little sister horse book. I couldn't stand the Barbie book, but she had to have it each night!
As the girls got older their reading tasks got better (or not ... Twilight, uggh) and I found I was reading a lot of things they were. Yes I've read Tale of Desperaux, Spirit Bear, Deep Dark and Dangerous and all the Harry Potter books. It is a lot of fun to talk to them about the book that we are both reading!
A few days ago I started reading the Berestain Bears book to Christopher and he immediately was interested. He studied each page and even pointed to a few of the pictures and said the appropriate words or word-sounds. As part of his therapy we stop him ever minute or so when he's doing something fun and get him to interact. So things like 'say 'A' or 'say 'rock' or 'what is this?'. With this book he is very responsive. So when ho woke us up at 5:30 Deb read the book to him, but he never went back to sleep!
I hope that when my kids look back like I am now that they have fond memories of all the books we've read together.
The last few days he's insisted that we read him the same book, each night and last night he went to sleep holding it. The book? The Berenstain Bears on the Moon. This is unusual because up to now he hasn't had a 'must read' book. He has some he likes us reading, but no 'must have' book before bed.
This got me thinking about other books that our kids made us read and books that have specific meanings at various times in our lives. I've been meaning to do this since the Spring. I even sent myself an email outlining this post ;-) I don't remember the trigger specifically, but I'm pretty sure it was something that Elizabeth Lynn Casey did. Who is Elizabeth Lynn Casey? She is the pseudonym for a woman I went to High School with. Turns out she paid attention in the various English classes and is pretty good author. She also has a really good blog here. (No she's not related to Deb, though Deb's maiden name is Casey and I'm pretty sure they knew each other in High School.)
Making good use of Social Media, Elizabeth has questions for her readers or answers questions about her writing almost every day. I can't find which post prompted this idea for me, but here goes. (If this is bad, its her fault ;-)
I don't remember reading books as a little kid, but I know I did read a lot. I distinctly remember going to the library several times with my Mom and that there were always books around our house. My first memory related to a book is reading an Erma Bombeck book and sharing one of the more funny passages with my Grandfather. Only to have him question my Dad about why I was reading things like that as a kid. It took a few more years before I could read things my parents had!
I remember reading Hardy Boys, Encyclopedia Brown, war stories, history and mysteries. I remember going through a Alistair MacClean and Agatha Christie phase and even reading all of Leon Uris' books as a teenager.
I also remember really clearly having my copy of Star Wars taken away by a teacher who caught me reading it in class instead of the science book. That was one of times my parents had the 'we're disappointed in you for doing it, but can't really punish you because it was a good thing to be doing' lectures. Yes there were many, many of those as a kid.
Throw in The Outsiders, That Was Then This is Now, Guadalcanal Diary and many of the fun "school" books and I was always reading.
The book that stands out the most for me in the Green Berets. It was the book I was reading when the really cute brunette 15 year old looked over the seat on the airplane and asked me what I was reading.
Skip ahead a bunch of years, the cute brunette and I had our first Daughter and started reading children's books. Meghan had two favorites, which we read to her every night. The first, Guess How Much I Love You we could recite in our sleep. And probably did a few times. The second was the Sandman. Being a good father I of course made the books fun. One of the pictures has Big Nut Brown Hare bending over to jump and I got Meghan to say 'he's pooping!' each time we got to that page!
Then Courtney came along and she liked the same books as Meghan, but really liked Good Night Moon and some annoying Barbie's little sister horse book. I couldn't stand the Barbie book, but she had to have it each night!
As the girls got older their reading tasks got better (or not ... Twilight, uggh) and I found I was reading a lot of things they were. Yes I've read Tale of Desperaux, Spirit Bear, Deep Dark and Dangerous and all the Harry Potter books. It is a lot of fun to talk to them about the book that we are both reading!
A few days ago I started reading the Berestain Bears book to Christopher and he immediately was interested. He studied each page and even pointed to a few of the pictures and said the appropriate words or word-sounds. As part of his therapy we stop him ever minute or so when he's doing something fun and get him to interact. So things like 'say 'A' or 'say 'rock' or 'what is this?'. With this book he is very responsive. So when ho woke us up at 5:30 Deb read the book to him, but he never went back to sleep!
I hope that when my kids look back like I am now that they have fond memories of all the books we've read together.
Saturday, August 07, 2010
Book review: Making Sense of Autistic Spectrum Disorders
There is no easy way to start this post, so here goes. Our son has been diagnosed as being on the Autistic Spectrum (ASD). In particular he has been diagnosed as PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified). I won't get into a lot of details here about what is different about PDD-NOS and "autistic" but he is being treated by a Developmental Pediatrician for (among other things) Autistic symptoms.
So why am I writing this? Two year ago Christopher started Preschool at the same church-school that our other daughters went to. He was definitely different as a toddler than both girls, but they weren't that similar either. By Christmas we knew something wasn't right, so we started having him tested and eventually moved him into a special needs preschool at the local public elementary school. As good as Christopher's doctors, therapists and teachers are, I still found myself overwhelmed with what was going on.
His doctor explained things well, we asked lots of questions and took lots of notes, but sometimes we missed things, or got so hammered by what was going on we missed subtle things. And, at least for me, I was afraid of the answers to some of my 'why' and 'what will happen when he's older' questions, so I didn't ask them.
We were given a lot of books, articles etc. I spent a lot of time reading on the internet, but still didn't have a good idea of what was going to happen. Honestly, we still don't know, but the book I am going to review below helped answer a lot of questions.
I found this book by accident. I was on the campus of Georgia Tech before a meeting and decided to kill a few minutes in the Barnes and Noble there. I saw this book on one of the tables, read a few pages and immediately bought it. To this day I haven't seen it in any other Barnes and Noble when I'm just walking around, so I got lucky that day.
The author is James Coplan, and from what I've been able to find out about him, a respected Developmental Pediatrician with many years of experience with Autistic children.
The first part of the book is about what the Autism Spectrum is, how your child can be diagnosed, some scientific information about what may cause Autism and what it means. It tackles head on the "Explosion" of autism diagnoses the media has been hysterical about and talks about what scientists do know and what has been proven false. Even if you don't read the whole book, find it in a bookstore and read Chapter 4.
Having completed the evaluation process for Christopher, what he writes about was still fresh in my mind. Several things I hadn't heard before were presented, several that I had heard but hadn't quite comprehended were touched on. Fortunately for my understanding, but unfortunate for Autistic children, the 'what' was presented and the author clearly stated when they don't know 'why'. There are still a lot of WTF things that are proving scientifically/statistically valid that can't be explained. Things like the jump in head circumference as an infant that has a high correlation to a later ASD diagnosis.
The second part talks about intervention approaches, progression of therapies as age and abilities increase including a pretty good set of chapters about school and how to tell your child their diagnosis. We are still really early in these processes, but it was relieving to see some of the 'next things' that we will be doing in the years ahead.
The last chapter in this section was one of the best in the book. He hits heads on the "Quackery" that is in the Autistic community. From the outright frauds, to the overzealous but good meaning therapists who say they can "cure" Autism. Having already thrown money at Christopher's therapy a few times it was a good reminder that there are no quick fixes. (Though sometimes the unexpected 'new' thing helps a lot. I'll write about the iPad we bought Christopher in another post.) The author also makes a suggestion/plea to the parents to be more open to letting their child take part in well defined and well supervised trials to see if new treatments work or to help with the "pure science" that we lack in understanding these diseases.
The last section was very refreshing and touched on the topics of the family, financial planning and what may happen in the years ahead. He included an example of a prescription he wrote to the parents of a severely Autistic child. What was it for? "Dinner for two, refill six times, take as needed". He even asked for the receipts to prove the parents were taking time to maintain their relationship. He also reminds us to take care of our other children. This is one area where I think we are doing okay, but sometimes you need to be reminded.
The final chapter in the third section is about the practical matters of finances, special education rights and planning for the care of your child after you die. Not something you want to think about, but one of the examples hit home. The parents were no longer able to restrain their 12 year old autistic son when he hit puberty and had to place him in a group home. While I don't think we'll come to that with Christopher, at 4 he is already head and shoulders over most 4 year olds and is very strong. That could be us some day.
The book ends with a lot more medical/technical discussions and several dozen pages of references and resources. The section about the drug treatments and why they help is fascinating.
Unlike most of the other books and articles we've read about ASD, this is the first that either doesn't dumb it down or have 12 syllable words ever other word. The flow of the book is very good and I found it easy to read. I did have to put it down a few times to digest what we may encounter with Christopher.
For anyone entering on this journey and feeling overwhelmed, this is a great book to start with. Every chapter has tons of references if you want to dig deeper into an area when you are ready.
So do we know now what is going to happen with Christopher? No we don't. We've seen some significant improvements based on some therapies (and time) and others that didn't seem to help at all. I still lay awake many nights wondering what is going to happen to him and us. I worry a lot about the impact of this on our daughters, but I am also impressed and proud of how they are coping and how this is shaping their views of what they want their futures to be. We're still optimistically putting money every month into his college savings and so far haven't had to divert those dollars into his treatment (don't get me started on the insurance practices I've learned about, but I can say they have been both good and bad.)
What does this mean for this blog? Not much. I'm not going to be blogging exclusively about Christopher, Autism research/breakthroughs etc. I will blog about things that we find out that help or didn't, but I'll still blog about general family things.
Making Sense of Autistic Spectrum Disorders
James Coplan, M.D.
ISBN 978-0-553-80681-6
http://www.amazon.com/Making-Sense-Autistic-Spectrum-Disorders/dp/0553806815
So why am I writing this? Two year ago Christopher started Preschool at the same church-school that our other daughters went to. He was definitely different as a toddler than both girls, but they weren't that similar either. By Christmas we knew something wasn't right, so we started having him tested and eventually moved him into a special needs preschool at the local public elementary school. As good as Christopher's doctors, therapists and teachers are, I still found myself overwhelmed with what was going on.
His doctor explained things well, we asked lots of questions and took lots of notes, but sometimes we missed things, or got so hammered by what was going on we missed subtle things. And, at least for me, I was afraid of the answers to some of my 'why' and 'what will happen when he's older' questions, so I didn't ask them.
We were given a lot of books, articles etc. I spent a lot of time reading on the internet, but still didn't have a good idea of what was going to happen. Honestly, we still don't know, but the book I am going to review below helped answer a lot of questions.
I found this book by accident. I was on the campus of Georgia Tech before a meeting and decided to kill a few minutes in the Barnes and Noble there. I saw this book on one of the tables, read a few pages and immediately bought it. To this day I haven't seen it in any other Barnes and Noble when I'm just walking around, so I got lucky that day.
The author is James Coplan, and from what I've been able to find out about him, a respected Developmental Pediatrician with many years of experience with Autistic children.
The first part of the book is about what the Autism Spectrum is, how your child can be diagnosed, some scientific information about what may cause Autism and what it means. It tackles head on the "Explosion" of autism diagnoses the media has been hysterical about and talks about what scientists do know and what has been proven false. Even if you don't read the whole book, find it in a bookstore and read Chapter 4.
Having completed the evaluation process for Christopher, what he writes about was still fresh in my mind. Several things I hadn't heard before were presented, several that I had heard but hadn't quite comprehended were touched on. Fortunately for my understanding, but unfortunate for Autistic children, the 'what' was presented and the author clearly stated when they don't know 'why'. There are still a lot of WTF things that are proving scientifically/statistically valid that can't be explained. Things like the jump in head circumference as an infant that has a high correlation to a later ASD diagnosis.
The second part talks about intervention approaches, progression of therapies as age and abilities increase including a pretty good set of chapters about school and how to tell your child their diagnosis. We are still really early in these processes, but it was relieving to see some of the 'next things' that we will be doing in the years ahead.
The last chapter in this section was one of the best in the book. He hits heads on the "Quackery" that is in the Autistic community. From the outright frauds, to the overzealous but good meaning therapists who say they can "cure" Autism. Having already thrown money at Christopher's therapy a few times it was a good reminder that there are no quick fixes. (Though sometimes the unexpected 'new' thing helps a lot. I'll write about the iPad we bought Christopher in another post.) The author also makes a suggestion/plea to the parents to be more open to letting their child take part in well defined and well supervised trials to see if new treatments work or to help with the "pure science" that we lack in understanding these diseases.
The last section was very refreshing and touched on the topics of the family, financial planning and what may happen in the years ahead. He included an example of a prescription he wrote to the parents of a severely Autistic child. What was it for? "Dinner for two, refill six times, take as needed". He even asked for the receipts to prove the parents were taking time to maintain their relationship. He also reminds us to take care of our other children. This is one area where I think we are doing okay, but sometimes you need to be reminded.
The final chapter in the third section is about the practical matters of finances, special education rights and planning for the care of your child after you die. Not something you want to think about, but one of the examples hit home. The parents were no longer able to restrain their 12 year old autistic son when he hit puberty and had to place him in a group home. While I don't think we'll come to that with Christopher, at 4 he is already head and shoulders over most 4 year olds and is very strong. That could be us some day.
The book ends with a lot more medical/technical discussions and several dozen pages of references and resources. The section about the drug treatments and why they help is fascinating.
Unlike most of the other books and articles we've read about ASD, this is the first that either doesn't dumb it down or have 12 syllable words ever other word. The flow of the book is very good and I found it easy to read. I did have to put it down a few times to digest what we may encounter with Christopher.
For anyone entering on this journey and feeling overwhelmed, this is a great book to start with. Every chapter has tons of references if you want to dig deeper into an area when you are ready.
So do we know now what is going to happen with Christopher? No we don't. We've seen some significant improvements based on some therapies (and time) and others that didn't seem to help at all. I still lay awake many nights wondering what is going to happen to him and us. I worry a lot about the impact of this on our daughters, but I am also impressed and proud of how they are coping and how this is shaping their views of what they want their futures to be. We're still optimistically putting money every month into his college savings and so far haven't had to divert those dollars into his treatment (don't get me started on the insurance practices I've learned about, but I can say they have been both good and bad.)
What does this mean for this blog? Not much. I'm not going to be blogging exclusively about Christopher, Autism research/breakthroughs etc. I will blog about things that we find out that help or didn't, but I'll still blog about general family things.
Making Sense of Autistic Spectrum Disorders
James Coplan, M.D.
ISBN 978-0-553-80681-6
http://www.amazon.com/Making-Sense-Autistic-Spectrum-Disorders/dp/0553806815
Sunday, March 29, 2009
I guess he didn't want me to clean up
After I cleaned up the many messes that Christopher makes in the family room each hour, he decided that he really wanted to play with all the trains.
After:
More pictures in the flickr site.
After:
More pictures in the flickr site.
Saturday, October 18, 2008
Possessed Keyboard?
For a few minutes this afternoon I thought the keyboard on Deb's computer was possessed. Every time I would type a space a comma would also be displayed. In every application I tried.
I looked at the keyboard, nothing obviously wrong with it. Shook it a few times, blew on it, nothing helped. Finally I got out the can of compressed air and blew it out. Out came a piece of dried orange/pink sugar. Hmm, who likes Popsicles? Who watches Thomas the Tank Engine videos on the computer?
Yup, at 2 and 3/4 Christopher has caused me to do computer repair. (Though in his defense, who gave him a Pop when using the computer?) This child is going to be more trouble by far than either of the girls.
Oh yeah, we took many of the child-proof door locks off the doors this weekend. He has the figured out to the point where they buy us less than a second to catch him before he's out the door. It takes most adults a couple of seconds, so we just took them off.
I looked at the keyboard, nothing obviously wrong with it. Shook it a few times, blew on it, nothing helped. Finally I got out the can of compressed air and blew it out. Out came a piece of dried orange/pink sugar. Hmm, who likes Popsicles? Who watches Thomas the Tank Engine videos on the computer?
Yup, at 2 and 3/4 Christopher has caused me to do computer repair. (Though in his defense, who gave him a Pop when using the computer?) This child is going to be more trouble by far than either of the girls.
Oh yeah, we took many of the child-proof door locks off the doors this weekend. He has the figured out to the point where they buy us less than a second to catch him before he's out the door. It takes most adults a couple of seconds, so we just took them off.
Wednesday, August 27, 2008
Wordless Wednesday: No Gate can keep me in!
Monday, August 25, 2008
Christopher's first day of preschool
Pictures here
Well, he didn't cry when we dropped him off. Neither did Deb.
Today was Christopher's first day of preschool. He slept in (why doesn't he do that on weekends?), had a good breakfast and got dressed.
We're in the middle of some bad weather right now (remains of Fay) so we left extra early. We arrived at the school about 20 minutes early and waited. I was again the red sports car in a sea of mini-vans and SUVs. I think I saw 5 other cars total!
At 9 we walked him he. At first he tried to not go into the room, but I blocked him with my leg and he went in. He then turned around and tried to run out, but Deb and I had him blocked. Silly boy, we've done this before!
A few seconds later he found a puzzle he liked, then went to the easel to draw. A few minutes of that he found the pots and pans and started banging on them. That was our sign to leave.
The teacher said he was sad and cried a little while we were gone. When Deb met him after class (a whole 2 hours!) he was a little sad but cheered up when he got a new Thomas the Tank book.
Wednesday is supposed to be harder since he now knows what he is in for.
Well, he didn't cry when we dropped him off. Neither did Deb.
Today was Christopher's first day of preschool. He slept in (why doesn't he do that on weekends?), had a good breakfast and got dressed.
We're in the middle of some bad weather right now (remains of Fay) so we left extra early. We arrived at the school about 20 minutes early and waited. I was again the red sports car in a sea of mini-vans and SUVs. I think I saw 5 other cars total!
At 9 we walked him he. At first he tried to not go into the room, but I blocked him with my leg and he went in. He then turned around and tried to run out, but Deb and I had him blocked. Silly boy, we've done this before!
A few seconds later he found a puzzle he liked, then went to the easel to draw. A few minutes of that he found the pots and pans and started banging on them. That was our sign to leave.
The teacher said he was sad and cried a little while we were gone. When Deb met him after class (a whole 2 hours!) he was a little sad but cheered up when he got a new Thomas the Tank book.
Wednesday is supposed to be harder since he now knows what he is in for.
Wednesday, July 30, 2008
In the clock ...
That is where we found Christopher's toothpaste. It disappeared a week or so ago and we've looked everywhere for it (or so we thought.)
Today Meghan, Courtney and a friend were working on a puzzle on the dining room table, he climbed up on one of the chairs, opened the clock and took it out. It was like he knew it was there.
I wish he could talk more, I'm sure there is a good reason for putting it there.
Yes, boys are different ;-)
Today Meghan, Courtney and a friend were working on a puzzle on the dining room table, he climbed up on one of the chairs, opened the clock and took it out. It was like he knew it was there.
I wish he could talk more, I'm sure there is a good reason for putting it there.
Yes, boys are different ;-)
Friday, July 18, 2008
That was different ...
Tonight the little guy was overtired. When I got home from work the family had just come back from the pool and he was pretty tired.
During dinner, he decided that Mom's salad was better than his, so he ate from her disk, with his fingers. Deb really likes ranch dressing. Apparently the little guy does too. He had it all over his face and belly.
I gave him a tub to get him cleaned up, THEN he pooped. Typical little boy. Can't be clean for 5 minutes. After changing that he kind of just wandered around, bouncing off stuff, banging his head, knees etc and generally being whiny.
I took him up earlier than usual, expecting he'd play or give me a hard time. Nope. We brushed his teeth, washed his hands again and sat down to read a book. He actually sat through all of 'Goodnight Moon'.
After I turned off the light he started to do his usual routine: sit on my lap, facing out for a minute. Then placing his head against my chest for a minute, then flip flopping repeatedly until I had enough and I put him in his bed. However tonight he sat on my lap, then turned completely around and put his head on my chest and his full body on me.
I usually just make up the words to songs like 'hush little baby' but tonight I couldn't get the Adam's Family theme out of my head, so I hummed that. He looked up at me a couple of times, but eventually put his head down and passed out cold.
Compared to the fun the first part of the week with him getting out of bed, turning his light on, getting books out or throwing his stuffed animals for 30 minutes, it was nice.
But the Adam's Family? No, I don't know why I was humming it.
Now I can go watch SciFi Friday while Deb is out shopping!
During dinner, he decided that Mom's salad was better than his, so he ate from her disk, with his fingers. Deb really likes ranch dressing. Apparently the little guy does too. He had it all over his face and belly.
I gave him a tub to get him cleaned up, THEN he pooped. Typical little boy. Can't be clean for 5 minutes. After changing that he kind of just wandered around, bouncing off stuff, banging his head, knees etc and generally being whiny.
I took him up earlier than usual, expecting he'd play or give me a hard time. Nope. We brushed his teeth, washed his hands again and sat down to read a book. He actually sat through all of 'Goodnight Moon'.
After I turned off the light he started to do his usual routine: sit on my lap, facing out for a minute. Then placing his head against my chest for a minute, then flip flopping repeatedly until I had enough and I put him in his bed. However tonight he sat on my lap, then turned completely around and put his head on my chest and his full body on me.
I usually just make up the words to songs like 'hush little baby' but tonight I couldn't get the Adam's Family theme out of my head, so I hummed that. He looked up at me a couple of times, but eventually put his head down and passed out cold.
Compared to the fun the first part of the week with him getting out of bed, turning his light on, getting books out or throwing his stuffed animals for 30 minutes, it was nice.
But the Adam's Family? No, I don't know why I was humming it.
Now I can go watch SciFi Friday while Deb is out shopping!
Wednesday, July 16, 2008
'I Love You'
Deb swears that Christopher came up to her yesterday, gave her a hug and said 'I love you'. He's not speaking much so that must have been pretty cool.
He's also been saying 'olo' for 'hello' instead just 'hi'.
Now he needs to say 'Go Giants!'.
He's also been saying 'olo' for 'hello' instead just 'hi'.
Now he needs to say 'Go Giants!'.
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