A view of autism from along the spectrum

It has felt like it’s Autism 7×24 lately. The transition between school programs for one of my sons has moved autism even more to the center (if that’s even possible!) of our busy lives. Even more of our lives over the past few weeks have revolved around various aspects of autism, from school meetings, social skills groups, educational evaluations, and using vacation days to stay home while my son is “in transition” between programs. While I’m happy to do all of it and even proud of how I’ve been able to make a difference, I also admit to feeling rather worn out. It’s easy for me to become wrapped up in the day to day challenges and lose sight of the bigger picture.

While waiting for an appointment last week, I picked up a copy of Time magazine’s Best Photos of 2005 issue. I expected to be impressed with some exceptional photography, but I was not prepared to be touched emotionally. I opened the magazine and I found page after page of pictures of the devastation caused by last December’s tsunami, Katrina’s destruction in the US, and the recent earthquakes in Pakistan. Perspective came back to me bit by bit with each image as I realized how my current challenges pale in comparison to those of many others.

I’ve always found this time of year appropriate for taking a personal inventory and recognizing the many things for which I can be grateful. The experiences of the recent weeks provide a great framework for it. The blessings I’ve been given are many and the burdens are simple in comparison. The goal for me is to continue to recognize and appreciate the rewards that come from facing the day to day challenges. The opportunity is there for the taking. The first step is to keep the proper perspective.

This isn’t a post about constructing barriers. Instead, it’s about the constraints that the physical walls of the school buildings place on our children’s educational programs.

The change in placement that my son is going through includes a move to a new school. He needs to leave behind a lot of relationships and start over with both staff and peers. He will also need to change schools again next fall as he moves to middle school. By the time he starts sixth grade, he’ll have changed schools 5 times since kindergarten. A typical child will make only one change during this time.

Our school district is fairly large and a lot of resources are available. However, at the elementary school level, the staff with the strongest skills and experience with autism are concentrated in a single school (out of a 10 elementary schools). We’ve been able to tap into the district resources on a consulting basis, but it’s now necessary to move the child to where the adults are.

I’d love to see more outreach from this cluster of expertise into the other schools. I know other parents who have children on the spectrum and their children’s programs are limited based on the experience of the school team. It seems like such a waste to see staff struggle with how to put a program in place for a child and know that there are experienced resources just a few miles away that could help.

I know this issue is not unique to our district and that most districts also focus their autism resources into a single school. There are many benefits to this arrangement but it’s also time for districts to get a little more creative. The districts need to provide more effective programs for children throughout the school system.

In my line of work, we use a lot of very common technical tools to build teams that cross very large geographic barriers. We also hop in our car and drive when we need to work with people locally. I know the school systems are also capable of implementing district wide programs when it is necessary. It’s time to do so.

We have too many tools, too many experienced people, and too many children with autism to let something as minor as the walls of the school building stop us from reaching out.

Some really great things happened as we dealt with the breakdown in my son’s placement.  After my wife took him home from school last week, following a morning in which things went very poorly, I told some of the staff that we agreed that it was time to make the change.  A lot of discussion ensued and a staff member asked if I thought my son ‘needed closure’.  We agreed that it was important for him to leave on a positive note rather than having the last few weeks overshadow the two and one half years in the program.  I envisioned closure to mean a chance to quietly say goodbye to his teacher, his aide, a few peers, and the staff that has supported him.  The school team had other ideas. 

Earlier this week, my wife brought him back to school at the end day.  His mainstream and special ed class had all gathered for a going away party.  Good Luck posters were splashed on the computer screens in the classroom.  Teachers brought in cupcakes and cookies.  The students had made a large number of cards wishing him well.  Most were covered with pictures of his ’special interests’ that they all knew very well.  One student even sang a song.  The principal and support staff were there along with his mainstream teachers from the two prior years.  He exchanged phone numbers with a few classmates before leaving.

A week ago, he wanted nothing to do with a new school and acted as if he might be able to prevent the change from occurring.  The night of the going away party he told me he was sad to be leaving his classmates.  He’s also expressed both anxiety and excitement about his new school.  In other words, within a week, his reaction has evolved into a set of very appropriate emotional responses.  I’d even call them typical.  I’d even call his recognition of his feelings as mature.  He still has some emotional baggage about having to make a change, but to me it looks like the change in placement is already showing benefits.

We’re incredibly grateful to the staff for such a wonderful sendoff. If you’re reading: Thanks Again!

I gained enough material for blogging this week to last at least a month. This week one of the boys’ school placements fell apart and came to an end. It collapsed in dramatic fashion, with lots of trips to school, lots of emotion, and more than a little heartbreak.

The drama was intensified by the effort the entire team put forth trying to hold the program together for him. There have been so many positive moments, so many signs of growth, that we all probably held on too long. The warnings were there for a while, and everyone kept making adjustments up until the end. While we all did this with the best of intentions, it put my son in the difficult place of having to work that much harder to let us know that it wasn’t working.

Watching the emotional struggle that he went through the past few weeks was the heartbreaking part. He struggled with a program that was very familiar to him, and he struggled again when he knew it was time for a change. We know it will work out, but there’s no shortcut to working through the challenges that come with the change. We will work with the school to minimize the impact but we can’t eliminate the change. We tried to avoid it for the past few weeks and we know it didn’t work.

It’s only been about 36 hours, but we’re starting to move forward. We all expect him to flourish in his new placement and will meet next week to formalize it. His resistance to the change is melting away, and signs of enthusiasm are beginning to show.

There’s no cause here for placing blame. I hold high expectations for the school district. I let them know when I think they fall short of those expectations and give credit and thanks when they meet them. I recognize that educational placement for kids on the spectrum is complex. There’s no magic formula to determine what placement will work for each child, how long it will work, and how we’ll know it exactly when it’s time to change. I know I can live with the ambiguity. However, none of this knowledge reduces the heartbreak that comes from seeing my son struggle.