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 ( 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.

Saturday, August 14, 2010

Potty training a really tall boy who likes to climb

Those are M&Ms taped to the wall about 2 feet from the ceiling. Those are the 'rewards' for going on the potty. Except that he is so tall that if he stands on the chair or toilet that he can reach them unless we put the up really high.

The chair is for me or Deb to sit in while he's waiting. And so we can hold the iPad ;-)

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.

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