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April 12, 2012

Five Thing to Know When Caring for Non-Verbal Severely-Autistic  Individuals.

By Kim Oakley

  1. They can’t tell you if they’re in pain. Watch for changes in behavior, eating, sleeping and mood.  I.e...excessive crying, increased self-injurious behaviors, aggression, increased seizure activity, insomnia, excessive sleeping, muscle weakness, unusual screaming, distended stomach, new changes in eye movement increasingly lethargic.  Sometimes hidden LOW grade chronic infections are present that don’t show up on a blood test.

  1. They may have paradoxical responses to medications.  Ie...ativan used for calming may cause mania or Valerian Root may cause insomnia.

  1. They may refuse to eat and drink several times before finally eating.  If you give up, they won’t receive proper nutrition and hydration. Keep trying. Move them to a different room. Come back. Try again.

  1. Food preferences may change. One week the autistic person may prefer crunchy, salty foods. The next, sweet and sour, the next warm foods only, the next cold foods only, and finally, they may refuse any food unless it’s minced or pureed foods.  It’s is critical to learn as much as you can about the autistic individual’s behaviors and preferences.

  1. They are smarter than they may appear. Even if they’re sitting alone and appear in own world, they still need stimulation. Give them sensory toys to chew on or play with. Placing them in front of a TV for hours— in some cases— isn’t therapeutic. TV today is not like when I was young. Visual pictures move FAST. Commercials are annoying and loud. It can overexcite the brain and later trigger undesirable behaviors. Sitting in a garden, with a little sunshine, proper hydration, reading them a book and playing Mozart would be a good alternative.

April 10, 2012

Florida Mom of Severely-Autistic Son with SIB in Crisis

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Just saw this Jacksonville, Florida news story (Jacksonville Mother Feels the Pain of Caring for 20-year old Autistic Son) and it is yet another severe autism reality that must be seen. The mom in this video is at her wit's end. Her son, Harley, is destroying the home. He's slapping himself in the face and head. He's still in diapers. He screams. He punches holes in the wall. Anti-psychotics aren't helping. And he's no small guy. At 6'2" and 252 lbs, he looks more like a running back than a young man with profound autism.

Like so many of us who have family members with severe autism, our lives are upside down. How we make it through some days is only by the grace of God. And by having tangible, effective supports. This mom needs help. Sadly, getting help for your severely-autistic family member is never easy. And I mean never. Matt Soergel, the writer of the newspaper story about this case reminds us, "Life with Harley means Sheffield has stepped on a nonstop treadmill of bureaucracy."

Why can't legislators make it easier? Something has to change.

Clearly, in cases like this an expedited process is in order. The mom also suffers from post-traumatic disorder. No surprise there. After all, when you live in a world where your autistic child has been banging, slamming and screaming for years, you tend to get a little jumpy. She says she needs a stiff drink, shoot I'd like to send her a case of Merlot. Apparently, an attorney is helping with the case. It's a travesty that families have to rely on attorneys for a situation that is an obvious on-going crisis.

Ven Sequenzia of Autism Society of Florida reminds us, "A lot of these kids don't end up getting anywhere near what they need...the only way the state responds is to litigation." The mom tried home care, but caregivers sent were "untrained and ill-equipped to take care of him." Not surprising either. It took me months to find nurses who could handle my autistic son. The state agency charged with helping me find caregivers never did. As the mom speaks you can see and hear the urgency and distress. Are we not a nation who prides itself on caring for our most vulnerable citizens? Every night I see commercials about abused animals. And shows telling us to support illegal immigrants and transgender rights. And how we must help poor people in other countries. How is it then that America's severely-autistic citizens in constant crisis remain so invisible?

No doubt, our priorities in this nation are out of order. If only the mainstream media were so obsessed with severe autism we may see some real progress in getting this population the help they so desperately need.

April 1, 2012

Home Care Vs. Out of Home Care for Autistic Adults

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryWhat My Severely-Autistic Adult Son Would Cost California if our Family Didn’t Receive Home Care Support:

According to California’s Legislative Analyst Office, the cost of basic placement for my severely-autistic 23-yr old son at the place he would’ve went (Fairview Developmental Center) if we didn’t fight to keep him home is:  $355,424 a year. Ironically a Fairview team of experts evaluated him at needing “2:1 care” during time of extreme self-injurious behavior.

According to a Disability Right’s legal analysis, cost of providing 3- properly trained employees (who split shifts throughout year) for my severely-autistic son’s required 24 hour, 7 day a week 1:1 protective care--would cost the state institution an additional: $193,775 a year.

Total: $549,199. This total doesn’t include outside services that would be utilized to manage my son’s level of complex behavioral and medical care. The total amount also doesn’t include episodic 2:1 staffing, which is a state documented need. Nor does it consider cost of overtime or workman’s comp claims for state employees working with my son’s level of care. Considering these realities, the cost of care at a state institution rises to over ONE MILLION bucks a year.

Currently, California is providing a fraction of that amount for my son’s care, in the least restrictive and safe environment, at home, with a family and nurses who know and understand his complex needs.

Recall families aren’t obligated under California law to care for adult autistic children. It’s a sacrifice. It’s not always easy.

For one, when families provide home care, they use their own stuff. This means a lot of wear and tear on home, along with increased expenses. As in: 5-mattresses a year (the number of annual X I’ve had to replace soiled mattresses) or excessive water bills (my son’s obsessed with 3-baths a day plus hot tub is used as emergency intervention for extreme SIB), extra garbage costs (diapers, bed pads, chucks, nursing gloves, air purifiers, food), smoke detectors, heat and air conditioning, etc...

How else to families providing home care save state big bucks? Family pays for never ending laundry (many severely-autistic go through 2-3 clothing changes a day), gas to and from medical appointments, recreational costs, special foods, haircuts, sheets, weighted blankets, allergy free pillows, sensory friendly pants, sweaters, bathing suits, towels, shirts, shoes, socks, hats, sunglasses, sunscreen, ice packs, music therapy CD’s, wound care items, oxygen tanks, special lotions, shampoos, conditioners, vitamins, herbs, toothpaste, jackets, sensory toys, etc...  

Also consider when families receive stipends for home support, family may pay home health aides/nurses directly from a stipend. This means family uses personal computer, printer, paper, stamps, envelopes, gas, lights, phone and precious time to ensure overall home support is a success. Other duties include (all of which I do) recruiting, training, hiring and monitoring home health staff. This isn’t by choice. State officials could never find nurses or health aides for my son, as if they weren’t invested in his home care. As a result, I figured I would have to go out and recruit my own team of nurses. It took a while until I got some really great ones. I sure learned a lot.

I also provide all the medical, behavioral and nutritional management and oversee all medications. I don’t get a salary for any of this. If my son were placed out of home, persons doing above work would be more than one person, getting paid to do all this. 

That said, I am not against placing an autistic person in an institutional or group home setting. I am opposed to bureaucrats who don't invest time and energy into providing families with home based supports. It's easier for them to start the out of home placement. Clearly, more effort and funding should be put into securing autistic children and adults at home, rather than out of home.