A view of autism from along the spectrum

When MJ was an infant, he played the role of baby Jesus in the Christmas pageant at LJ’s school. It was pretty special event.

As I remember this pageant, I think about how important it is for me to always see God in my children. It’s easy to see Him when they are happy, creative, and playful. It’s harder when they are fighting or having a meltdown. I know He’s there and I need to remember to keep looking.

I also need to teach my children to see God in themselves. If I can do that, I’ve taught them something for a lifetime.

Merry Christmas

MJ is always happy when he is making something. It can be building a Lego, baking cookies, or a number of other activities. A week or so ago he told me he wanted to make a video. The subject was his often performed rendition of the Christmas song Dominick the Donkey performed by a pair of nutcrackers. It was his video, so all I did was film it, letting the setup to him. I still laugh every time I see it.

SJ sleep habits were different from birth. We expect that with infants, but unlike LJ and MJ, he never shifted to a typical sleep pattern. He went to sleep late, woke in the middle of the night and woke up early. Once he was out of a crib, he began getting up in the night and crawling into bed next to someone else, usually my wife. Seven years later, we finally found something that is making a difference.

We noticed some unusual sleep habits when SJ was small. Every night we would tuck SJ in with head on or next to his pillow and the covers tucked in around him. An hour later, SJ would be lying on top of his covers with his body flipped around so his head was at the foot of the bed. It was like this every single night, and pretty much still is.

We noticed the other unusual habit when SJ crawled into bed with us. During the day, he was mostly indifferent or even adverse to hugs and close contact. Nighttime was a very different story. After crawling into bed, he would snuggle up close to one of us. After a while, he’d throw an arm over us, followed shortly by a leg. This was followed by elbows in the neck and knees in the back. Eventually, arms and legs would be in knot. We’d get up and put him back in bed but there was rarely a night that he stayed there all night. Some nights he would just get out of bed and lay down on the floor in the hallway.

A few weeks ago we got around to replacing his mattress. His old one was very firm and without a lot of padding. We took SJ with us when we made the final shopping trip. When we walked into the store, he immediately found one of the new viscous foam mattresses that have no springs. I tried to get him to try a more traditional (less expensive) mattress. He tried them but he kept going back to the foam mattress, laying down on it while wearing a huge smile.

We were just about to buy a regular mattress that it hit me. If he really likes the feel of the mattress, and it sure looked like he did, maybe he’ll sleep better on it. Of course, maybe he wouldn’t but there was no way to know for sure. It was enough for to know that it might help. So yes, we paid a few hundred dollars more and bought the foam mattress.

In case you’ve never tried one, lying on a foam mattresses is a completely different sensory experience. You feel the support of the bed on all parts of your body at once. There’s no bounce and your body sinks into it, giving the feeling that lying in the bed rather than on it. It feels rather strange to me, but SJ really likes it.

On the way home, my wife and I decided to put some effort into increasing the odds that the bed would make a difference. We gave SJ lots of verbal reinforcement that he was going to comfortable and that he would want to stay in his own bed. We also told him that if he slept by himself for 10 nights in a row, we’d put up the bunk beds and he could have the top bunk.

Well of course he slept by himself the first ten nights. He got up a few times but went back to bed by himself. We gave him a freebie and let him crawl in with us one night during a thunderstorm.

He kept up his end of the bargain. I’m still trying to find the missing hardware to stack the bunk beds.

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.

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!

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.

Harriet McBryde Johnson is a lawyer, activist, and writer. She’s been mentioned in several other blogs recently, but when I read them, I failed to dig deep enough to get to know much about her. While I was not able to attend the public speech she gave last week in the area, an article in the Hartford Courant provided some insight to the person she is and the message she delivered last Monday. She is living her life in a way that leads by example.

I won’t repeat Ms. Johnson’s story. It’s available in the article, in her book and elsewhere. Instead, I’ll share the most compelling aspects of the little I’ve learned about her. Ms. Johnson has dealt with what many would call a disability since birth. She describes to the Courant her experience as a student when she moved from a ‘self contained’ program to a mainstream setting. During this time, she felt that she had strong ties to a peer group in the self contained setting and lost those relationships when she was moved to the mainstream setting. While the mainstream setting provided ‘typical’ peers, it did not provide the peer support she previously had.

The experience carries a powerful message about peers, and how much is given up in the name of mainstreaming. It’s an example that all parents need to consider when making educational choices for our children. We parents, and others involved in planning their programs, must make sure that the educational setting provides the appropriate peer support our children need.

Johnson has written a memoir and recently published a novel, Accidents of Nature. In the novel a teenager with cerebral palsy has some life changing experiences when she attends a camp and meets other disabled teens for the first time. It sounds as if she has drawn on her own experience to present an aspect of living with a ‘disability’ that is often overlooked. Connecting with others that have common experiences is such a fundamental part of human nature, it’s amazing it’s so often over looked when we seek out what’s best for our children.