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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

 

 

 

Happy Thanksgiving from The Autism Blog

In the spirit of the Thanksgiving holiday, we here at Seattle Children’s Autism Center thank you for your support of our blog and our work with families living with autism.

Holidays bring both stress and joy so take a couple deep breaths and mindfully keep it as simple as possible so there is less stress and more joy.

 

Wyatt Wears Jeans

Wyatt wore jeans today.

He came home from Kindergarten last night and informed me that he had to wear jeans in order to be able to ride a horse on his field trip.

Fortunately, I keep a pair of jeans around in his size.  They are usually from a garage sale or Value Village and for the remote possibility that he might actually want to wear them.  I never imagined it would ever happen!  So, when he announced this I headed up to the attic and retrieved the jeans.  We put them on this morning and off to school he went looking very handsome and ‘normal’. 

I laughed with delight when the aide helped him out of the car.

Wyatt replied, “Don’t laugh at me.”

I said that I was laughing because I was happy. I actually cried all the way home.  That is one of the privileges of having a child with special needs…you never take for granted the little things…like wearing jeans.

Fast-forward 8 years…

Wyatt wore jeans today. He told me that he wanted to look nice for his 8th grade promotion.  So, up to the attic I went and retrieved another pair of jeans.  He complained about the button, but went off to school looking very handsome and ‘normal’. 

He informed me that I was allowed to show up for promotion, but he insisted that I didn’t ‘make a big deal’ and let me know the he preferred I didn’t come up and talk to him too much afterwards.

I smiled and told him how proud I was of him for making it through 8th grade.  I actually cried through the whole ceremony.  We had both worked so hard to get to this point. That is one of the privileges of having a child with special needs…you never take for granted the little things…like wearing jeans.

So, while other parents were celebrating their children’s promotions and snapping photos, I’m standing in the background celebrating jeans. For in wearing jeans, Wyatt reminded me of the need in all of us to be loved and accepted for who we are.  The need in all of us to be a part of the common community that we call the ‘human race’.  To me that is nothing less than a miracle.

 

Practice Trick or Treating at the Autism Center

Trick or Treat at the Autism Center!

Seattle Children’s Autism Center holds an annual Trick or Treat practice party in the welcoming halls of the Autism Center. A (very) autism-friendly event for the entire family. Bring friends! All welcome at this relaxed fun-filled event designed for your family. 

 

Come enjoy door-to-door trick or treating, costumes, treats, games, prizes, and our memorable sensory room.  Dr. Travis Nelson from  The Center for Pediatric Dentistry will be on hand with toothbrushes and non sugar goodie bags.  Saturday Oct 21st from 10 am – noon.  Seattle Children’s Autism Center  4909 25th Ave NE, Seattle 98105.  Plenty of parking in front.  Lots of volunteers to play with your goblins.  Come feel at home in the hallways of the Autism Center. 

8 tips for a safe and enjoyable Halloween for your child with autism:

  1. Let your child practice wearing their costume at home. This gives you time to make any last minute modifications and time for your child to get used to it.
  2. Write a social story describing what your child will do on Halloween.  
  3. Create a visual schedule. This might include a map of where you will go.
  4. Practice trick or treating in a familiar environment. Visit friends and family, if possible, even neighbors.
  5. Keep trick or treating short and comfortable. Consider letting siblings (that might want to go longer) go trick or treating with a friend.
  6. Use role play to practice receiving and giving treats.
  7. If your child has difficulty with change, you may want to decorate your home gradually.
  8. Remember, Halloween looks different for every child on the spectrum and you know your child best. Use your intuition and if you only make it to three houses, that’s okay!

Hope to see you there!