Posts Tagged ‘autism caregivers’

Autism Ups and Downs: When Parents Lose Their Way

Monday, September 20th, 2010

Losing our way as parents happens.  Typically, it begins with the nagging doubt  that we aren’t doing something quite right, but we cannot  for the life of us figure out what it is. Sometimes the realization is a false alarm generated by other stressors in our lives.  Other times, the doubt is based in reality, but the underlying issue is easily identified and corrected by advice from other parents,  professionals or the ever-helpful Google search engine.

But other times, we parents do come to a point where we don’t know what to do, and all of the advice, research and theory just won’t cut it.   We need hands-on training.

That’s where Steve and I are now, and that’s when I know it’s time to call in the in-home parent trainer.

I do not like in-home parent trainers. I don’t dislike them; they just scare me with their common sense and practicality.  In fact, it’s always been my experience that our parent training is similar to the “Nanny” TV shows (except there aren’t any cameras, thank goodness). In those programs, the trainer patiently and quietly observes the family as they go through their day-today routines. The trainer then comes back  to reveal parenting errors that were obvious to everyone watching, except the oblivious parents. 

We know, we’ve been clueless parents, too.  Some suggestions that we’ve fielded from our trainers are:  ”Connor might walk better if you’d let his feet hit the ground once in awhile.” (We were carrying him too much) or “So what do you think he’s feeling right now?” (Reinforcing the idea that Connor has the right to provide input into his own care and treatment options).

So as painful as it can be, in-home parent education is well worth the time, trouble and less-than-flattering view of ourselves as parents.  But I dread it, even as nice as the trainers are, and even though the cost is covered by the State.

But wouldn’t it be even nicer if we had access to parent training on a continuous basis?  I, for one, believe that the Parents as Teachers/First Steps parent education we enjoyed when Connor was an infant should extend through at least middle school.    In Missouri, the Parents as Teachers training program ends when the child begins pre-school.  The trainers, usually ex-teachers who prefer to work part-time, show up at the parent’s doorstep every month or so to check on the child’s  progress and to give parents useful and fun activities to assist his/her development. Now that Connor is 9, and is officially in the ‘tween’ stage, we could use that help now.

Using Scorecards to Select Advisors and Caregivers

Friday, June 5th, 2009

As parents of children with autism, we are dependent upon many experts to advise us what to do to help our children. The sheer amount of feedback from educators, therapists, specialists and well-meaning friends and family members is overwhelming, and it is easy to get lost inthe various opinions, suggestions, and frankly, the personal agendae being tossed at us every day. Some of it is pretty good stuff, and some of it is pure distraction.

Whom should we listen to? Whom should we trust? It’s not an easy question to answer, and referrals/references from local autism chapters and other parents can help, but are often insufficient to get to a short list of viable candidates.

One tool that my husband and I have found to be effective is a simple scorecard. Scorecards have been used in business for years, and can be built with sophisticated analytics, or organized around a few easy rules of common sense. We recommend the easy version! To create a basic scorecard, you simply take a set of characteristics that you think are most predictive of a good outcome — in this case, an effective advisor or caregiver. Each attribute is then graded individually, and then the individual components are tallied into a combined score. Those candidates who scored in the top half can be mined as valuable assets, and those in the lower half can be redirected to another subject –like the weather — or politely ignored.

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L. Mae Wilkinson:

National Examiner for Autism and Education

National Public Policy Examiner

St. Louis Examiner for Autism and Parenting

Co-moderator, The Coffee Klatch blog talk radio and tweetchat 

Reporter,  Autism Hangout 

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