Gather and Confer

I am currently attending Autism New Jersey’s 34th Annual Conference in Harrah’s Waterfront Conference Center, Atlantic City. A day of attending talks and peeking into booths and staring at posters and networking with new faces is behind me, and I held off writing anything on my usual day so that I could tell you what I’ve learned.

The first great insight I’ve gained is that it’s not just in my town. Please take a deep breath and understand what I’m about to say. Every other woman at this conference is wearing a huge stack of Alex and Ani bracelets, and the clacking drove me crazy. I gained fresh sympathy for people with sensory issues. A teacher friend of mine says it’s true of her school district too, so perhaps educators are over represented in the stack-wearing demographic. If you are wearing yours while reading this essay, my apologies, and I understand if you clack in my general direction.

The booths were a varied lot–some were for special ed schools, some for therapy companies, and some for therapy tools and aids. Several adult transition programs. Financial and estate planning so that our kids are left with something to live on. Parent support groups. Residential facilities. Universities with training programs for special education. Updates on latest research, plus if you send in a saliva sample of your autistic kid, apparently they will do some lab tests, though I didn’t remember to ask what they are searching for.

After the requisite glad handing and hobnobbing, we all filed into a huge room, first for an introductory talk by Senator Stephen Sweeney, who is the father of a child with disabilities, and a very inspiring advocate for policy change in the field of special needs. He gave a folksy but very targeted speech, and we gave him a rousing sendoff. Then we heard the keynote speech by Mary Jane Weiss of Endicott College. The talk was called “Essential Skills and How to Teach Them: A Lifelong Perspective.” It was an eye opening talk addressed to professionals in special education. Some teaching matters she zoomed in on were–teaching play must transition age appropriately to teaching leisure skills; communication skills must be taught not only from a response angle, but from an initiation angle (i.e. Sometimes our kids have to know how to START the conversational exchange); strong educator opinions cannot prevail in the face of evidence based practices; all skills taught must be functional and universally applicable; and the goal must always be to fade out adult supervision and not be “fluency blockers,” if the kids are to benefit from social opportunities and employment prospects.

MJ Weiss painted a bleak picture of current adult outcomes (much depressing data was shown) and said that educator focus must shift to very early preparation for transition and job skills, rather than the prevailing fondness for responding to timers, completing worksheets, and sorting beads. Wow. She also gave some interesting suggestions for successful outcomes–having kids make video resumes so they can demonstrate competent, functional work behaviors, and also addressing the job training personnel shortage by using Bluetooth devices while the kid is at a job site, so that there does not have to be one on one staffing. Ultimately, she concluded, educators must set goals that bring meaningful value to the kid’s life, promoting positive interactions with society and increasing independence.

I attended three other sessions today, followed by a movie screening. One was an IEP talk, and one was about NJ’s Children’s System of Care. The latter had a tough audience. All of us who were parent attendees have had our share of fruitless interactions with state services. On the panel was a mother who spoke of her family’s successful use of these services, and I confess I would rather have listened to an informational talk, even if that sounds mean. Sigh. But then, since we were a rough crowd, even the informative bits left me cold. When one of the panelists spoke about the types of respite care services offered, I wrote “Blah blah. Bite me” on my paper. I am not proud of it, and I promise you I said nothing untoward. But sometimes parents do feel this way, and it’s not because we are complainers, but because we carry a staggering mountain of responsibility and physical slogging, and when we are forced to spend an hour each time on the phone when we call the state, we are naturally underwhelmed when the inevitable answer is ‘no’ to pretty much every request we make. On the bright side, I made friends with the helpful hecklers, and we promised to hunt one another down in real life so we can talk more.

I really want to talk about the presentation by the director and deputy director of the NJ Institutional Abuse Investigation Unit (IAIU). It was called “What Parents and Professionals Should Know.”

If ‘trigger’ is not too fatigued a word to use, I will use it here. This talk was a trigger for me. I won’t be going into details, but we have had dealings with IAIU, and never really got any closure on the matter, so I was silent-crying by the end of the talk. But it was brilliant, and even the questions asked by professionals in the audience helped clarify so many matters for me.

IAIU investigates reports of child abuse or neglect that occur in places like foster care, residential facilities, detention centers, schools and school transportation, daycare centers, and camps. They handle only those cases where there is a transfer of care and custody to someone else other than the primary guardians, so if a child is hurt or molested, for example, at dance class, this doesn’t fall under IAIU. Many of us already knew the procedural stuff, but the PowerPoint mentioned things like IAIU having 60 days to complete an investigation, longer if law enforcement is involved, or if there are medical reports or autopsies to wait for; that IAIU relies on a preponderance of evidence rather than the ‘beyond a reasonable doubt’ approach taken to other types of accusations; if allegations against a person are substantiated, their name will go on the CARI list, which stands for Child Abuse Record Information. This makes it easier to flag an abuser when they try to apply for another job where children are involved.

The speakers were polished and chatty, and they mentioned their efforts to train better for working with autistic nonverbal children because the shocking inequity when an adult can deny an allegation and the child cannot speak about it must be addressed. Good. That’s all I have to say on the matter. The speakers also said that in their many years of experience, if the allegation is made, it usually happened, even if it cannot be substantiated. And they spoke of some of the legal roadblocks in their work that are meant to be fair to people who work with children who may be unfairly accused, but which silence people who work for IAIU, who have depressing factual knowledge about various institutions, but cannot achieve the satisfying closure that is sometimes warranted.

There is so much more to say. But I am ready to turn in, so I will write more after the conference ends tomorrow. I hope you enjoyed the brief highlights I’ve written!

Radha.