A view of autism from along the spectrum

I made the trip to NYC yesterday to attend the Autism and Advocacy conference that Jim Fisher organized at Fordham University. It was an incredibly uplifting day. Both the speakers and participants reached out to each other throughout the day and I felt a sense of community moving through the group as if it were contagious. It began before the conference as Jim struggled to move the community from one room to another to start the presentations. It continued long after the conference was over, even as the staff was breaking down tables at the reception. For me, it even extended to train back to Connecticut. It was the first time that I literally broke bread with friends on a commuter train. Looking back, I see how that symbolism was consistent with the rest of the day.

I’m thrilled that I was able to grow some relationships and start new ones. After meeting Kim and Sara earlier in the week, I am grateful for the opportunity to get to know them better. Sharing our experiences as parents helped us connect and exchanging Monty Python quips while dodging buses in the middle of 42nd street didn’t hurt either. I found out that Mike and I work in the same industry and share some common colleagues. I was also able to tell him how I saw my own son in Katie’s eyes. I had the chance to talk to Kassiane again and meet Scott who hails from my alma mater Penn State. I shared perspectives with Joe and wish I had the chance to talk with him more. I met Kristina and Jim, even if we could only talk for a brief time. There were others, and although I may not have learned or remembered their names, the sense of community was still there.

Some things that are contagious are good for us. Some even nurture us.

Jim and Kristina, thanks!

About two years ago we got an assistance dog, a golden retriever named Stitch, for MJ and SJ (see my last post for an explanation of the initials). A lot of people ask questions about Stitch, so here’s a post with all the details. I’ll cover our story, the reasons why we got Stitch, and how it’s working out. I’ll provide some other references at the end. Throughout the post, I’ll refer to Stitch as an “assistance” dog although others may use the terms “therapy” or “companion” dog. Any of these could apply to Stitch. This post will probably get a little long. You’ve been warned!

How It Started
About three years ago, my wife attended a workshop on autism put on by a the State Department of Education. She happened to sit near a teacher who worked in the autism program in our school district. They talked a lot and the teacher told my wife about an assistance dog that one of her students just got. My wife immediately took to the idea and began looking into the organization that placed the dog with the student.

My wife makes decisions easily, and it was probably that same night that she told me that she wanted to get an assistance dog for our boys. My first thought was “What a crazy idea. How could a dog be of any assistance to someone on the autism spectrum.” My second thought was “This is just another angle to overcome my resistance to getting a dog”. You should know that we’ve been married long enough for me to know better than to say my first or second thoughts out loud. I don’t remember what I said, but I’m sure that I expressed my doubts about the benefits and the additional work of having a dog. The boys were both diagnosed within the previous year and this seemed like the time to simplify, not complicate our lives.

My wife continued doing her research and within a week or so she had a printed information and video tape from the foundation the teacher mentioned. She read the material, watched the video and I could tell that her desire to get a dog for the boys was growing. I reluctantly sat down one evening to read the material. Within 10 minutes, I was convinced that we should get a dog. It was clear to me that the woman who ran the foundation knew autism and knew dogs. Her view of autism was very holistic and very focused on the needs of the autistic person. Her knowledge of dogs was extensive and included training, breeding, and placements for children with disabilities. She was not presenting a dog as either an intervention or a cure. I still find it hard to describe the perspective that I had as I read the materials and watched the tape. I remember knowing, almost intuitively, that this was a good thing, a really good thing. There was aboslutely no downside, other than some additional work and the cost. It simply felt right.

The Reasons Why
During our initial discussions, the foundation director encouraged us to think through our reasons for wanting a dog. We set out three objectives for an assistance dog:

• Help MJ calm down when he became frustrated, had a meltdown, or was anxious or agitated for any reason.
• Be a bridge to other children socially. Dogs often draw children and we hoped that the boys would benefit from increased opportunity for social interaction.
• Help us find SJ when he ‘disappeared’. When he was younger, SJ would sometimes leave the house when we weren’t looking (We quickly installed hooks on the screen doors, out of his reach). While that stopped, he would still sometimes isolate himself and not respond when called. We would eventually find him, contentedly sitting in the bottom of a closed closet, under a bed, behind some furniture, in the garage, or somewhere similar. We had been through enough panic that the idea of a dog to help find him sounded great.

How It Worked Out
To be objective, I’ll compare how things worked out with our objectives and then describe some of the unexpected benefits and challenges.

• Help MJ calm down - This worked out better than we had hoped. MJ was excited about getting Stitch and the two connected from the start. Unfortunately for MJ, the frequency and intensity of his meltdowns, anxiety and agitation got much worse before it got better. Stitch is critical part in working through these crisis. When he’s upset, MJ will lie on the floor and hug Stitch . The benefit seems to be primarily due to his emotional connection to Stitch, but I suspect the tactile experience of touching Stitch is calming as well. There are now far fewer metltdowns, but there are periods where MJ just needs to be with Stitch.
• Be a social bridge - This did not turn out to be as much of a benefit as we had hoped. It has increased the quantity of social interaction, and has had an impact on the quality of interaction, but in a different way than we expected. It’s helped MJ become more articulate and clear spoken, but hasn’t really increased the connection with peers. There are times when Stitch helps the boys connect with peers but the benefit is strongest there are other connections as well. In hindsight, our objective here may have been somewhat misdirected. Expecting the nature of the interactions to change was not really appropriate.
• Find SJ - fortunately, by the time we got Stitch, about 15 months after our decision, the need for finding SJ had almost disappeared. Nonetheless, we did lots of training and practicing, with SJ intentionally hiding and my wife or I giving Stitch the command to “Find SJ”. He always did.

Unexpected Benefits and Challenges
Stitch received a good deal of training before we got him and we continued to work with a local trainer afterwards. MJ was very involved, attended all the classes, lead Stitch through most of the exercises and practiced at home. He was proud of his role in the training and he had the opportunity to enjoy satisfaction in his success. This was a huge benefit, and we used it as an opportunity to both celebrate and further develop MJ’s skills.

Stitch is definitely a social bridge for the family. Stitch gets lots of attention in public, especially when we are at an event centered around Autism. When Stitch spent some time with us at the ASA conference in Providence this summer, we rarely walked more than 30 feet without stopping for someone. There have been numerous opportunities in which everyone in the family has shared some extra attention because of Stitch.

While Stitch was very easy to train, he did like to leave the yard and roam the neighborhood. Neither the command “Come” or treats were enough to get him to return. This lead to a lot of frustration and quite a few back yard baths after Stitch rolled around the mud. We had to put up an “invisible fence” to keep him in the yard. MJ watched the training videos did almost all the training himself, under mom’s supervision. Stitch learned very quickly and has only left the yard once since we put up the fence.

I admit to feeling somewhat uncomfortable taking Stitch into public places that do not usually permit dogs. Stitch’s role is very different from that of a dog assisting someone with a physical disability, and it is rarely a necessity to have Stitch along with us. There is no visibile indications to others that the boys need any type of assistance, although Stitch does wear a ’saddle’ that says “Assistance Dog”. We don’t take Stitch to many public places and when we do, I’m always expecting someone to say, “You can’t bring the dog here.” It’s never happened to me but I’m still not completely comfortable having Stitch with us in some places.

Interstingly, as much as MJ is connected to Stitch, he does not want Stitch to sleep in his room. They cuddle before bedtime but, when it is time to go to sleep, Stitch has to leave. I think that it is completely a sensory issue for MJ. It’s certainly not a problem for us, but it was a surprise the first time MJ wanted Stitch to leave.

The bottom line is that I would do it again in a heartbeat. I did not grow up having dogs as pets, so I’m not necessarily enamored with having a dog as part of the family. Despite this, I recognize that Stitch has been an incredibly positive addition to the family. We are all better for it.

If You’re Thinking About a Dog
We got Stitch through the North Star Foundation. The director, Patty Dobbs Gross, recently wrote a book called The Golden Bridge: A Guide to Assistance Dogs for Children Challenged By Autism or Other Developmental Disabilities. I haven’t read it yet but I’ve been impressed with Patty’s knowledge and approach since I first read her materials. There are links to other organizations that place assistance dogs on the North Star site.

I’ll offer a little advice if your considering a dog. First, breeding is the single most important factor. Patty once said that breeding accounted for about 95% of the important characteristics of the dog. Second, make sure that your expectations for the dog, your capability for training, and the role of organization providing the dog are all in sync. There are a lot of different ideas about what an assistance dog is, how much they are trained, and what their role is. You need to make sure that you have the same expectations as the organization with which you work. It’s not necessarily the crazy idea that I initaly thought it was. Yes dear, you were right!

From now on, I will refer to the boys using nicknames. So far I’ve avoided using their names, even though I know that it’s still fairly easy to figure out who they are. My objective has always been simple: to keep their names from showing up on search engines with links to my blog. Using nicknames will enable me to meet that objective while not continuing to resort to cold descriptions such as “my middle son”. Carrie, Laura, and Ian’s comments to my last post were right on the money with their advice. Thanks for sharing it.

Unfortunately, we don’t consistently use any nicknames so I’ll have to make some up. Since all three boys have the middle initial “J”, I’ll use that as a starting point, but I won’t use their first initial, I’ll use a slightly different abbreviation.

So, I’d like to introduce the boys. LJ (for Large J) is my 20 year old NT son. He doesn’t live at home any more but he’s an important part of the family. MJ (for Medium J) is my 11 year old who was diagnosed with Asperger Syndrome shortly before his 7th birthday. It was his diagnosis that brought us into the world of autism. SJ (for Small J) is my 7 year old who was diagnosed with PDD-NOS at age 4. SJ was diagnosed 8 months after MJ, so by then we were experts (Shawn says with a grin!) I planned on using other letters for initials but realized that Large, Medium and Small is a lot easier for readers to put in context. I like to keep it simple.

Now, onto my next post. . .

It’s been a long break from blogging for me. There’s no big reason behind it, just a lot of little ones. Here’s a sample of my rambling thoughts from the past few weeks. Next, it’s time for me to catch up on my reading.

• When did our idea of the perfect educational setting become 20 students, all of the same age, placed in a room with one adult with a four year college degree? OK, so we vary the number of students and some teachers have advanced degrees. Still, it’s a pretty narrow model considering the diversity of learning styles people have. Why is this model considered ‘mainstream’?
• I hate the word ‘retard’. I mean, I really, really hate the word.
• There are not nearly enough child psychiatrists in central Connecticut. I expect other areas have the same problem. I can’t believe how often my wife and I hear of families that can’t find any child psychiatrists taking new patients.
• I built a PC for the first time last month. My 11 year old has wanted to build one for a long time. For his benefit, we bought a case with a see-thru side panel and blue LED lights for the inside. He loves making things and if it has lights, all the better. I can also now say that my kids use Linux.
• I want to figure out how to balance privacy with writing about my kids. Maybe nicknames would help. I’m getting tired of writing “my 11 year old” or “my 7 year old”. It sounds so cold.
• Anyone who says razing children with autism is a nightmare has never parented a neurotypical teenager. OK, it wasn’t a nightmare, but there were days when it felt like it. Fortunately, we all keep growing. As of last weekend, I am officially no longer the parent of a teenager. I am now the proud father of a mature and responsible 20 year old. It feels really good.
• In know one particular special education administrator who avoids taking responsibility for doing anything they don’t want to do. The only way to get something done is to put every request in writing. Without it, I can expect little but excuses. I get so tired of writing letters.
• For years, my wife and I have been taking the boys out for breakfast on Saturday mornings. We have a lot of reasons for doing this, one of which is that the local diner is a great place to practice social skills like eating politely, using inside voices and speaking clearly when ordering. My youngest doesn’t always speak clearly and will look at everything except the waitress when he orders. After observing this yesterday, I coached him to aim his voice at the waitress and I demonstrated by moving my hands back and forth between my mouth and the place where the waitress stands. I fully expect that next week when he orders, he will move his hands back and forth between his mouth and the waitress. He’ll probably still be facing somewhere else when he says “French Toast!”
• I received a brochure in the mail for an upcoming autism seminar. Instead of focusing on treating autism, the seminar is about the attitudes and beliefs of the people providing support. I have never come across a seminar with this type of focus. I’m glad to see the dialogue on autism become broad enough to support a seminar like this.
• There’s a lot of ’stuff’ on the internet vying for my attention: Email, RSS, Bogs, News sites, forums. I find it tough to filter it out. That’s one of the reasons for the long blogging break
• There are far too many issues with school transportation. I am stunned at the things that slip through the system. On the first day of school this year, two buses showed up to pick up my youngest and his classmates. We got a call from the van driver picking up my middle son. He asked to adjust pickup times and locations for several days. He called again at the end of the day and asked if we would meet him a mile away from the house because he was running late! Last year, my youngest was not dropped off at his correct bus stop for the first three days. We discussed all transportation arrangements at the PPT but when the bus showed up at the end of the first day and he wasn’t on it, the bus driver said he knew nothing about it, and didn’t know where my son was. The driver didn’t seem to care either. My son got off with a classmate a stop earlier. Yes, we panicked and almost went back to ’special’ transportation. Ugh!! There are too many people involved: the school, special educators, the district transportation staff, the busing company, the bus drivers. No one acts like they are responsible.
• It’s time to finish some of the posts that I have percolating.
• The leaves are changing colors in New England and we saw the first wave of ‘leaf peepers’ come through this weekend. I just love the change of seasons.

My wife and I place high expectations on our school district. However, we are also pragmatic and know that there are many things competing for the attention of teachers and administrators. We recognize that, in some situations, it’s faster and easier to accomplish things on our own than trying to work the system. Providing information on autism for mainstream teachers is one of those situations.

One of our boys has been mainstreamed since kindergarten. He starts third grade next week, which means his fourth teacher in four years. He’s also on his second full time para. Right or wrong, we don’t expect that every mainstream teacher knows as much about autism as we’d like. My son’s teachers receive a lot of support from special educators, school psycologists, etc, but we want them to know the basics of autism on their own.

The same goes for his paraprofessional (or ‘aide’). Paras’ experience vary greatly and, in general, the school district does not do much to prepare them. When my son got a new para a year or so ago, she admittedly knew very little about autism. She had supervision and support, but was certainly willing to learn more on her own.

We gave two different resources to teachers and aides recently. We may ‘lend’ the materials but if the teacher or para wants to keep it, we’ll happily go buy another.

The first is a publication developed jointly by the ASA and the NEA (and other professional organizations) called The Puzzle of Autism. I hate the title but I think it is a wonderful overview of autism for an educator. It’s only 44 pages total and about 25 pages are content on autism. I can’t imagine any teacher not wanting to take the time to read it. Copies of the guide have been made availalbe from the NEA, and while they are currently out of stock, you can download the document and print it.

The second resource is a book titled How To Be A Para Pro : A Comprehensive Training Manual For Paraprofessionals. Although not clear from the title, the book is written for paras and teachers of students with an ASD. The first part of the book presents an overview of ASDs and the second part focuses on how paras can provide appropriate supports. One of the co-writers, Diane Twachtman-Cullen, has authored several books on autism.

Again, it would be great if the school provided these resources, but I don’t mind investing an extra $20 or so each year in the kids education. Providing it ourselves is also a good way to start a dialogue with the teacher.

I begin a one week vacation today, not to travel but simply to be home with the boys. For the next week, while my wife is working full time, I get to spend the day with the boys, setting the agenda on what we do, where we go, what we eat, and just about everything else. It’s a real treat to have both the responsibility and the freedom to make the decisions. My wife and I do a great job working together as parents, and I couldn’t imagine doing it without her, but sometimes it’s nice to be independent for a while.

My wife and I work our schedules like this a lot during school breaks, and it’s how most of my vacation is spent each year. It’s usually a few days at a time and I’m looking forward to having a whole week. It’s much easier to get into a routine over the course of a week.

We’ll do some ‘guy’ things and we’ll do some things that the boys normally do with mom. Sometimes the boys will enjoy the change and, as I’ve already seen today, sometimes I will just be messing up their routine. I’ll be ready for that to happen and we’ll all get to practice our flexibility.

We’ve had a great half of day so far and we’re actually having some ‘quiet time’ after lunch. We ran some errands this morning and as I tried to get my youngest off the tire swing and into the car, he informed me:

You don’t do errands! Mom does errands! You’re not thinking right!

My first coaching opportunity had presented itself.

I love this job!

I was doing some work at home late last night when my wife said “You’ve been tagged.” For us “tag” is a code word meaning “You are now 100% responsible for the children.” I looked at her, thought about the fact that the kids were both in bed and asleep, and replied, “Uh, . . . OK.” She then smiled and said “You have no idea what I’m talking about do you?” I’ve learned that this is the type of question that can get you in trouble if you answer wrong, so I stalled for time and said, “Huh?” She then explained about Ian’s post.

Here we go:

1. I married the girl next door. OK, she was really the girl downstairs and we were in our twenties when I rented the apartment upstairs (from her dad, no less). I call this close enough to the ‘girl next door’. As I write this, I’m upstairs and she’s downstairs. We’ve long since moved but some things haven’t changed.
2. In the car, I only listen to AM talk radio and geeky podcasts. I listen to a lot of music but the only music radio station I’ve tuned into years is WMVY. Thanks to the internet I don’t have to to to Cape Cod to listen.
3. I taught myself to use biodfeedback / meditation to cure frequent cases of the hiccups. I figured that if Buddhist monks can do this to lower their heart rate I should be able to control spasms in my diaphragm. It worked the first time I tried it and has been near 100% effective. Since I’ve learned this technique, it only takes me about 30 seconds to rid myself of the hiccups and I don’t have to drink water upside down.
4. The last time my face was completely clean shaven was during Ronald Reagan’s first term as president. I sport the common goatee / moustache combination that is called a Van Dyck.
5. My license plate reads “PRRT-HD”. It was a gift from ‘the girl next door’ when I celebrated A Pirate Looks at Forty day. It came with an inflatable shark, a cheesburger, a margarita and a change in attitude.

I’m not going to tag anyone else, at least for now, because I’m behind in my blog reading and I don’t want to tag someone twice.

Here I am posting another piece of fluff . . .

I notice that more and more bloggers are using captchas in order to fight comment spam. Captcha is the name for the image of blurred and twisted letters that you must decipher and enter before submitting a comment. They are used because automated programs cannot read the letters (yet!) and if they can’t read the letters they can’t leave comments directing people to adds for drugs and bodily enhancement products.

The problem with captchas is that I can’t read them either. I always think I can read them and then I type the letters and confidently click submit. Most of the time, the program gives me a message telling me I was wrong and that I need to type the letters correctly next time. There are times when I pay extra close attention and am absolutely sure that I read and typed them correctly. I click submit and get the same message telling me to try again with a new set of letters.

I give blogspot.com lots of credit for the design of it’s captcha program. Whenever I incorrectly type in a captcha at blogspot, it gives me a new captcha that is noticeably easier to read. I call it the old guy with bad eyes captcha. It’s kind of comforting that blogspot recognizes me everytime I leave a comment. Now if only I could get blogspot to give me the old guy with bad eyes captcha on the first try, I’d be very impressed.

If I were a real writer, this would be called a fluff piece.

I found time for a few movies lately and came across two with some very loose connections to autism. At least I saw some connections. If you don’t, please remember that this is a fluff piece.

The first was a movie for the kids. My wife called me late one Friday afternoon at work and asked me to stop and buy a movie called Hoodwinked on the way home. I had never heard of it, had trouble finding it, and was not very impressed with what I could glean from the DVD case. Boy was I wrong.

Hoodwinked tells a familiar tale, the one of Little Red Riding Hood, from four different points of view. We first see Red’s story, than the wolf’s perspective, then the woodsman’s, and finally Grandma shares her tale. All the story telling is done for the benefit of the police and a detective trying to solve a crime. As the character’s tales intersect, we see multiple views of the same moments, each time from the perspective of a different participant.

The movie is a relatively low budget computer generated film. Nonetheless, it’s the most creative CG film I’ve seen since Toy Story. While Pixar has continued to push the limits of CG movies, Hoodwinked relies on a subtler approach to entertain by using clever dialog and creatively allowing the pieces of the story to be revealed. The boys watched the movie at least a dozen times and I enjoyed it each time I watched with them. They even played it a few time with the director’s commentary which is almost as entertaining as the movie.

The autism connection was simply an appreiciation of the approach of showing experiences from different perspectives. Generalizing across different situations is a weak area for my youngest. Interestingly, listening to the director’s comments probably helped him make connections that he would not otherwise have made. The learning opportunities are hardly earth shattering, but they are there, along with a lot of laughs.

The second movie is one for me: Serenity. Serenity is a movie based on a wonderfully written, beautifully acted, and poorly marketed TV series called Firefly that ran on Fox for about half a season a few years back. I never saw it until after it was cancelled and only truly discovered it within the past year, when I got the series on DVD and loved it so much that I had to buy the movie.

I doubt the movie stands on its own without the TV series as a the back story. And the series was admittedly unusual. It’s a futuristic western with a ensemble cast living onboard a spaceship. The crew includes former soldiers, a preacher, a pilot who plays with toy dinosaurs, a woman paid for her companionship, and a guy who never seems to have enough weapons. The crew spends most of their time making a meager living by smuggling shipments past the government. The show is filled with incredibly witty diaglogue, some of which happens to be in Mandarin. OK, maybe I understand why Fox blew the marketing.

The autism connection in this movie centers around two characters. A seventeen year old girl named River joins the crew with her brother. River displays many characteristics that remind me of autism. She’s not autistic. She’s been the subject of neurlogical experiments by the government and her brother, a physician, rescues her and tries to help her cope with the changes brought on by the experiments. Again, this is not autism, it’s fiction!

While it was some of River’s characteristics that first made me think of autism, it was actually the actions of her brother, Simon, that really hit home for me. While he is focused on ‘fixing’ things for his sister, his interaction with her is completely nurturing, supportive, and most of all respectful. Even while trying to protect her and cure her (again, this is not autism), he continually shows her an incredible amount of respect, discussing everything with her and allowing her to make decisions for herself. He treats her as a person. The crew catches on as well and midway through the movie the captain professes that the crew has risked their lives for the belief that she is “whole and not broken.”

While I recommend the movie, start with the series if your interested. It’s not for everyone, but it’s made me a Joss Whedon fan. And a browncoat.

This year’s ASA national confernece was only a two hour drive from home. My wife attended for the whole conference and the boys and I joined her Friday night. A few thoughts on the short time I spent at and around the conference Friday night and Saturday:

• My wife’s observation that the people at the conference were incredibly friendly was right on the money. Even an introvert like myself was engaging in easy conversations.
• The exhitbition hall at an autism conference is the perfect place for children to ’stim’ in public. My youngest attracted nothing less than warm smiles and laugter as people easily recognized the enthusiasm, energy, and excitement as he he kept running and spinning his way accross the floor to very large crawl-in toy from Abillitations.
• Providence has more restaurants per square mile than any other city in the US. The boys just want to know where they can get chicken nuggets.
• You can’t have too many sensory toys. Or autism books.
• It’s hard to walk very far when accompanied by the boys therapy / assistance dog Stitch. Stitch was, to put it mildly, a very popular golden retriever this weekend. The attention made the boys feel special too. And that special feeling is one of the reasons we got Stitch for them.
• You never know who you’ll meet. While attendance was light Saturday, and the blog writers attending had already presented their sessions, I was delighted when I spotted Kassiane’s nametag in a group of people Stitch befriended. Hearing that she was doing the conference Jim Fisher is organizing in NY this fall gave me another reason to make a day trip to ‘the city’ in October. If you’re intrested, Kristina has more information at Autismland.
• As far as the boys are concerned, hotel + pool = vacation.
• Three out of four people with an ASD are male. Less then two out of ten autism conference attendees are male. I could write a whole post on this topic!
• Sensory sensitivities make it very difficult to sleep in a hotel room in a busy city on a Saturday night. Those sensitivities were mine. The kids were sound asleep.
• While this is the first national conference I’ve attended, I was impressed with the quality of topics covered. It seems that every year that goes by, the dialogue about autism focuses more on relationships, support, and understanding neurological differences. OK, there were also a few “fringe interventions” on the exhibit floor, but not many.
• While I gave the ASA a hard time about the slogan “The voice of autism” a while ago, they are doing some important things. Conferences like this have a lot of value.