Notes From the Road: Olympia, Washington

By Bonnie Yates, Esq

Olympia is a medium size town an hour south of Seattle, Washington. I stay there when I go to visit my son who is a freshman at Evergreen College.

I know an angel there who is the president of a large autism organization. She and her husband have been doing all that they can to educate Washingtonians about the importance of intensive, early intervention for children with autism and the difference between meaningful and meaningless treatment.

My angel (“M.A.”) has been kind enough to be a liaison for my son who is living so far from home. On points great and small she has been there for him, including but not limited to what kind of shoes you buy for bike riding outside in the rain in wintertime.

On a few occasions, M.A. has asked me to speak with folks in Washington who are struggling to get meaningful treatment for their children.

I was there last week and returned home, newly somber. As bad as things are in California, they are worse elsewhere.

In trying to come to some assessment of what factors conspire against families in Washington, several things seem to be in play:

• Local communities are small and everyone knows everyone else. Disagreement about educational services is more uncomfortable if you have to see your superintendent or your special education teacher at the garden center or in church.
• Washington has an independent and geographically isolated culture. The state was founded by hardy and capable settlers who wrestled farming land from a vast, forested wilderness. A strong sense of being self sufficient and taking care of your own runs through things.
• Perhaps coincidentally, many of the people I spoke with who are fighting to get services, are also employed by the school districts.
• And then there is the question of money and access to the resources. Washington has not been spared in the fallout from the Great Recession.

Here are some of the struggles.

M. is a single parent whose child is seven and is in a special day class. On the day that I met with her, she has finally gotten an independent evaluation to confirm that her child, A., is autistic and not PDD, as the District has claimed for years. M. has struggled mightily and by herself these last few years to take care of her child on her own, learning ABA therapy so that she could work with A. whenever A. is not in school or daycare. The problem is that school and daycare occupy most of A’s week and based on a review of A’s IEP, nothing about the approach there seems research based or systematic. Furthermore, review of the IEP does not help since the District has not included the service grid in the document. (I am told that they often omit this.)

Meeting with M.

M. is here to talk to me because she wants some advice about ESY services . Last year she fought and fought and finally was able to get the District to give her nine hours (yes, nine!) of services for the summer of 2009. She wonders what to do to get more help this year.

We discuss possible alternatives available to her and how to use the assessment results she has just received.

M. tells me that she works in a special education class with other children so that she can tailor her schedule around A’s. In the class where M. works, the special day class teacher tells her that she cannot use ABA as a methodology because “it will make the rest of us look bad.”

When she is not working or working with A., she teaches other autistic children, doing private ABA therapy. As I study her face, I can only imagine how tired she must be.

Meeting with P.

P. comes next with her two boys, ages six and a half and five. Her teenage daughter watches the boys during the interview so that P. can concentrate on our meeting. (I wonder about how her daughter is coping with the demands of two autistic siblings but that is a different discussion.)

P. is sharp and organized and has figured out a lot on her own. She is here to ask me whether it is even worth it to bother with the District’s program.

I review her IEP, which, again, lacks a service offer. We discuss all the hours spent on the road to take the boys to speech and other therapies. She feels her older boy is regressing due to too many hours in the car. She wonders out loud, “Is it worth it to drive an hour and fifteen minutes each direction to go to a 45 minute session of speech therapy?”

P. is trying to figure out whether to walk away from the District’s services and educate her boys herself at home. Looking at her, she probably has the tenacity to do it. I struggle with the question of what to tell her, having heard that her services consist of things like 15 minutes weekly of speech therapy.

P’s boys are quiet and well behaved during the appointment, although clearly autistic. I am not a clinician but having seen many autistic children over the years, they seem clearly recoverable.

I tell P. it is probably worth it to have a consultation with a Seattle attorney. I don’t see that she is going to get anywhere without legal help and assessments from a qualified psychologist. P. tells me legal action is unlikely. Her husband is a contractor and there hasn’t been much work for him since the recession began. Moving to Seattle in the hopes of finding a more “state of the art” district is also out of the question right now.

I tell P. that I have traded services with a contractor in the past and maybe she can find a Seattle attorney who will be willing to do the same.

As she leaves, carrying one boy and her daughter, the other, my heart is breaking. What more can P. and M. possibly do, given the circumstances?

On My Way Home

Olympia is gorgeous, with rain-cleaned air; a view of the sound in the background and flowers exploding on trees everywhere. After a nap, I have dinner with Nick and he makes it clear to me that he prefers that I don’t visit his seminar class in the morning.

I go home, happy to be rejected by my apparently now, independent college freshman. But in the middle of the night I wake up and I think about M. and P. and their children and the children of others I have met.

Autism does not go away by itself. It has to be appropriately treated. How can one superimpose “best practices” upon the entire state of Washington? I can come up again and do a workshop on IEP preparation and advocacy skills. But I can’t get money and services to these kind, honest people who are doing super-human things to try to insure the future of their children.

There are dozens of these folks in Washington and across the country whose kids are being passed by while there is still time to help.

What is going to happen when these kids grow up? Who is going to take care of them?

What is our national plan for this generation?

Your Comments and Questions are Welcome