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Mindful Monday – Connecting in the Real World

We’re all so busy that it’s easy to move through our day without really noticing those around us.

We walk down the street, phones in hand, spending more and more time in a virtual world. We rush from one appointment to the next, barely acknowledging each other. It’s easy to come across as aloof or even a bit grumpy as we hide out and hang out behind our screens.

Here’s a quick and easy mindfulness practice to help us feel more connected in the real world:

Set an intention today to connect with someone in person. No phones or computers allowed! As you walk down the hall, stop and say hello to someone. As you walk down the street, smile at a stranger. As you approach a door, hold it open for the person behind you.

That’s it. Give it a try and you might find that your day seems just a bit better. And who doesn’t need that?

Gene McConnachie – One of Our Heroes

Gene McConnachie, PhD Retires from DDA

If you are a parent whose child was diagnosed in the 1990’s, you know that there was not much in the way of supports and services for our families back then. Little was understood about ASD and treating challenging behaviors, Applied Behavior Analysis (ABA) was not widely endorsed much less covered by insurance and it was almost impossible to find skilled providers to serve us. Lucky for us that at that time, Gene McConnachie had recently completed his graduate work under Dr. Ted Carr, a pioneer in the field of Positive Behavior Support (PBS).

Gene began his work in Seattle with the Developmental Disabilities Administration (DDA) in 1993 as a clinical psychologist at two of our state’s Residential Habilitation Centers (RHC), Rainer and Fircrest. In 1996, he moved into Field Services, providing direct service to clients and families in their homes and for the past two decades, Gene has been a significant figure supporting DDA case managers, consulting with parents about behavior supports and how to navigate the DDA system, building local resources and partnerships to enhance supports to prevent clients from needing psychiatric or DDA institutional placements, teaching Positive Behavior Support to our community partners, and providing quality assurance for these services and supports.

In Gene’s twenty years at DDA, waiver services expanded to include the Children’s Intensive In-Home Behavioral Support (CIIBS) and Individual and Family Support (IFS) waivers and for fifteen years Gene’s Behavioral Support Team (BeST) program is still going strong. He trained upwards of 1000 residential support and other staff on PBS implementation within the context of DDA policies.

Gene has also played a major role in our region through his board participation in the annual Washington State Co-occurring Disorders Conference, ensuring that DDA clients and stakeholders received relevant training at a conference that would otherwise have been more exclusively focused on co-occurring mental health and substance use disorders. In addition, Gene served on the Seattle Public Schools Special Education Advisory and Advocacy Council and collaborated closely with the King County Developmental Disabilities Division. Nationally, Gene has served on the leadership team of the Home and Community PBS Network and on the Board of Directors of the Association for Positive Behavior Supports.  

Today, as many of our kids diagnosed in the 1990’s are transitioning into adulthood, Gene is retiring from DDA. I asked him if he had one wish for families served by DDA, what it would be and he said this:

“That DDA services are preventive instead of reactive so that we could assist families to navigate the many challenges to having a healthy family life from birth on, and prevent the trauma, turmoil, and much of the burn-out our parents experience raising a child with IDD.  We provide mostly reactive services after much client and family anguish, stress and trauma have already worn families down.”

To Gene McConnachie, our friend, colleague, advocate, and ally, we owe you a world of gratitude and wish you all the best! Till we meet again . . .

While retiring from DDA, Dr. McConnachie is semi-retiring from work! He will continue to serve families living with ASD and ID in his private practice. You can find more here:

http://www.samaritannps.com/sccnps/gene-mcconnachie-phd-nadd-cc

Happy New Year from The Autism Blog- Make It an Intentional New Year

With the holidays behind us and each day bringing a bit more light, now is a good time to contemplate intentions for the New Year. This is different from the tradition of making resolutions, which tend to be firm, fixed goals we set, promising to do or not do something, often the same ones each year. An intention, on the other hand, is your purpose, where you choose to direct your attention. Your intention shapes the nature of your action.

Here is an example. Let’s say I have a tendency to have critical thoughts and feelings toward myself and others. My resolution might be “Every day, I will say at least one positive thing to myself and others.” My intention though would be more like this: “As I go through my day, may I be sensitive, kind, and compassionate to myself and others.”  The resolution is an expectation while the intention allows for possibilities. It is fluid and flexible, recognizing that we are human and need to roll with the waves that life inevitably brings.

Wishing you all things good in 2018,

The Autism Blog Team

Abuse in the Form of a Hamburger

My 19-year-old daughter is profoundly deaf and severely impacted by autism and developmental delay. She’s been in supported living for the past three years – a single home that whole time, with one housemate in the other bedroom, run by an agency licensed by the state for her care. This past summer we experienced one of those incidents that I live in fear of at most times – fear kept tamped down to levels that don’t interfere with my everyday life, but still always calling out “present” when I check to see if it’s maybe taken some time off for a bit.

I had her out on her favorite Sunday lunch outing, a fast-food spot where she eats “cheese grilled sandwich french fries” as she invariably types into her iPad TouchChat app. It was just the two of us that day, and she was in one of her best moods, wide grins and lots of interactive communication about her new swim lessons on Thursdays and tomorrow’s planned outing with her grandparents.

While we were sitting and waiting for our order, a young woman came out from behind the grill – I recalled her from the cash register at previous visits, and she obviously recognized the far more memorable us. We’d never spoken before, though, and she started by asking if I was “her mom,” pointing to my daughter. “She was here last week,” the young woman told me, “with another girl who was, you know, disabled like her, and two older women with them.” She added descriptions that were clearly of my daughter’s housemate and some staff members. “I wasn’t happy with how the girls were being treated,” she then said, and paused, uncomfortable I think with saying more than I might want to hear. “Could you tell me more?” I asked, through the haze already rising up in my brain, hot and choking.

Pushing, shoving, impatience, food gone uneaten and taken away from the girls. “And you know how sometimes she” – pointing to my beloved girl – “kind of shrieks and flaps her hands really fast?” she asked. In fact, she had started doing it now, in happy anticipation of our meal. “Well, one of the staff people hit her up the side of the head when she did that

Always, always, my first focus in any situation is on my daughter and what she needs in that moment. Even though what I needed was to Get. My. Hands. On. Those. #%$!&$, what she needed was to unwrap her soggy white bread grilled cheese sandwich and gleefully peel away the crusts to eat first. She needed to carefully fill a cup with as many french fries from our shared order that she could, and place it out of my reach for her later attention. And yes, she needed to whip her head back and forth, flap her hands and let out a few shrieks as the meal progressed, just to express her excitement.

By the time these immediate needs of hers had been met, I’d honed my response down to the phone calls I needed to make right then, to figure out the next 24 hours and how to keep my daughter safe. This process was complicated by the chronic management upheaval at her home – there was currently no house manager in place, and the new “program director” (who oversees two or three houses run by the same agency) was literally starting in this position the next day, Monday. I had only met her and been given her phone number the week before.

The bare bones story of the weeks that followed include these scenes: my daughter “sleeping” (ha!) at my home Sunday night, because (I was told) there was insufficient proof to remove the staff in question from her home. Me waiting at the police station to file a report on Monday morning, and explaining to the officer in reply to his question that no, there was no possible scenario where physical restraint or coercion would be appropriate in caring for my daughter, even if she is developmentally disabled. It being safe for her to return home when the staff in question were finally suspended. The phone call where I learned that the hoped-for video confirmed the group’s presence at the restaurant on the reported date, but that the camera turned to their table was broken and there was no footage to “prove” what had happened.

What we ended with was two people’s word (two staff at the restaurant) against two others – the house staff who insisted that the whole story was a lie. Unless my daughter or her housemate could describe, themselves, what had happened that day, the case was closed

The supported living agency had conducted its own “investigation” and we met with them to hear their findings. “She didn’t want to eat her hamburger,” began the bigwig regional supervisor whom I’d never met before but who emerges in full defensive mode to run these conversations.

(“Why did they get her a hamburger??” was my younger daughter’s first question when I caught her up on what I’d learned, later that day. “Exactly,” I said.)

“Why did they get her a hamburger?” I asked the bigwig supervisor. “My daughter would never order a hamburger there.” Bigwig said there had been “miscommunication” and “misunderstanding” but “everyone meant well” and “there was no wrongdoing.”

I called bull!*@#, in so many words.

Here’s what I know. I know that if staff ordered a hamburger for my daughter, it means they hadn’t asked her what she wanted or given her the chance to say for herself what her choice would be. If ANY opportunity had been offered her, she would have typed “cheese grilled sandwich french fries” which is clear communication to anyone with even basic English, and difficult I believe to misunderstand.

I also know that she would have been agitated and unhappy about this. Not only does she not even LIKE hamburgers – but also, she has autism. People with autism don’t like changes to their routines. Not having a grilled cheese sandwich is a big deal change to that restaurant’s routine. My girl was entitled to be unhappy about all this, and to show it.

I don’t know – strictly speaking – whether staff pushed her around and hit her up the side of the head. But I don’t need to know that to know that she was abused that day.

And I don’t know when our society will learn to understand this – that people who have more difficulty communicating their needs have the same rights as anyone to having those needs heard and understood and met.

For my daughter, having a hamburger handed to her that day was just a different version of a slap up the side of her head.

The bigwig supervisor certainly doesn’t see things this way. She has stuck fast to her “misunderstanding” story and added for good measure, “staff in our homes across the state face accusations on a weekly basis, that are almost always unfounded.” Her definition of “unfounded” clearly doesn’t match mine – nor very likely that of the clients or families who bring the other accusations she brushes off so dismissively.

This “miscommunication” versus “mistreatment” description is not just a question of semantics, though I think that’s what the residential agency wanted to imply. I need those caring for my daughter to understand that without appropriate communication, they are not providing her with adequate care. I need them to acknowledge this and be accountable to it. This is something I will watch carefully for in the future, as she continues to rely on others to meet many of her most fundamental needs. 

The Seattle Children’s Autism Center Research Team is Hosting a Research Pirate Party!

We would love to have you come join the fun and participate in autism genetics research!  The SPARK and PANGEA studies are exploring genetic differences related to autism.  Families who attend the family fun day will be able to complete study participation for one or both studies in a single day!  

 

There will be food, games, prizes, parking, and childcare available!  Pirate costumes are encouraged!

 To reserve one of the limited registration spots, please RSVP by November 24th by calling (206) 987-7917 or by emailing SCACstudies@seattlechildrens.org.

***We will call to confirm your RSVP/sign-up time***

 When: Saturday, December 2 from 9am to 5pm

Where: Seattle Children’s Autism Center, 4909 25th Ave NE, Seattle, WA 98105