Decisions that keep family preservation in mind can positively affect your child’s quality life.

That ethical consideration almost seems like a no-brainer until you think about families that have put everything on hold in order to help their child. That kind of self-sacrifice seems noble at first, but on closer examination shows its flaws.

Most of us are dealing with something that lasts a lifetime, not a few years. Decisions need to keep in mind that this is about the rest of your life, your child’s life, your family’s life.

Be sure to communicate your unique family values and culture to the caregivers in your life. Give them a chance to honor those and reinforce what is important to your family.

Everyone will have to learn skills to support the child, and figure out ways to include your child in family and community life, while still honoring the needs of the whole family.

As you plan for your family, short and long term goals and procedures need to think about current settings for the family and the community, as well as transition processes for future settings.

Final thoughts on Guidepost Three …

About 15 years ago, we had a little trouble with our arrangements for occupational therapy when Sam was in elementary school.

I had managed to find a clinician who knew enough about sensory integration to afford Sam weekly sessions. She was a professor at Texas Woman’s University and ran the clinical program for the students. We’d go once a week and Sam’s 50-minute session would be led by one of the two students in the practicum, with the professor supervising.

It was a bargain for the school district — $20 a session — and Sam enjoyed the time there. It was easy for me to shuttle him there after school, since I worked across town at the University of North Texas. And, most importantly, we saw progress over the months and years he was there (from about age 5-12).

Somewhere along the line the professor and the district’s director of special education got crosswise with each other. The special ed director decided it was time to pull the plug on the arrangement. We had a sense there were reasons for the conflict on both sides — reasons that were never disclosed to us, which to this day still bothers me. The director made arrangements for clinic therapy with another professional in another town, at about four times the price by the way. That was that.

We’d heard of this OT’s work. Another parent raved about what her son had accomplished in her care, so we knew the director had put some careful thought into the change.

However, it was not possible for me to shuttle Sam there and back without negatively affecting my work schedule. If we allowed the school to bus him there, they would surely cut into his class time to make it happen.

Most importantly, though, we were concerned that Sam would have to learn to interact with a new person and new routine. That isn’t always a bad thing. But we’d just gone through several upheavals with speech therapists and these had cost him months in progress. While he was motivated to learn to talk, OT was another matter. He was, and remains, very defensive about challenging his senses, his balance, his way of moving in time and space. We thought he would lose a year just trying to get to trust this new person.

To this day, I have to ask permission for a hug. I don’t always get it.

We refused the change and insisted that the director renew the contract with TWU. The battle lines had been drawn with us, and the school superintendent, and the special ed director.

We sat down to negotiate. The special ed director never gave a compelling reason for the change. The superintendent sided with us.

This is perhaps the best example I have from our family history showing how the quality of social interactions affected decision-making. We couldn’t know whether we made the right decision, given that we weren’t afforded all the facts. We could only take comfort in knowing that Sam continued to flourish at TWU’s OT clinic and has very few sensory integration problems as an adult.

He also enjoys a connection with the professor, who has long since retired and moved to North Carolina.

Don’t underestimate the value of those social connections. At our core, we are social beings, much more like cows, horses, goats and other herd animals than the loners, like owls and eagles.

Continuing with this discussion about our ethical decision-making when it pertains to our children … our quality of life, and our child’s, depends on quality social interactions. I suppose you could sum this up in one word — rapport

Or maybe two — trust and rapport.

When Shahla talks about this idea of ethical social interactions with behavior professionals, she focuses, in part, on family interactions. Good professionals will recognize the child’s strengths and the family’s strengths and expertise. They will respect our relationship boundaries and our confidentiality. They will obtain our informed consent when we draw up treatment plans. A good plan will reflect both child and family-centered communication.

When the professionals speak with you, they will use accurate terms and descriptions and the intent and impact of their words will be clear and effective.

We parents have responsibility to be an effective member of the entire caregiving team — and, to the best of our ability, solve problems in a positive way.

One of the hardest places for parents to be effective is at a special education team meeting. Even professionals have trouble when there are conflicting demands between the school district and the team’s work on behalf of our child.

One of Shahla’s students, Heather Barahona, developed and tested a training program for parents to help them have better social interactions with school professionals. The next post will have Heather’s eight tips for parents which grew out of that test program.

Continuing this discussion about making the best decisions to protect quality of life for our children …

The second guidepost is knowing that the skills and expertise of the people in our lives will have an effect on the outcomes.

Like physicians — whose oath requires them first to do no harm — nearly every professional has ethical guidelines. (We journalists do, too, although critics sometimes accuse us of the opposite when they don’t like what we print.) If you know the ethical guidelines for the professionals in your child’s life, it helps you recognize if a treatment protocol or interaction is on the edge. Check the website of the professional association — such as the American Medical Association or the American Speech-Language-Hearing Association — to find out more.

Similarly, you should know credentials and competencies for the professional. For example, behavior analysts, who do so much to help our children, have quite specific guidelines for helping people with autism.

(Go here to find them: www.abainternational.org/Special_Interests/AutGuidelines.pdf)

Don’t ever be afraid to ask questions of the people in your child’s life. Their answers will tell you a lot. The National Institutes of Health wrote a primer to help you get started.

(Go here to see that: www.nimh.nih.gov/health/publications/autism/complete-index.shtml)

Just expanding on Guidepost One a little bit … let’s say you’re thinking about pursuing a new treatment for your child.

It’s a reasonable thing to do.

When I was age 6 to 10, my father was in dental school. He was approached by someone doing research on interceptive orthodontic treatment. It was very new back then. My dad was worried about the proposal, and wasn’t sure it was a good idea that I be an experiment subject.

These days, he said it was too bad because I was the perfect candidate. I had a little bit of crowding, and it was causing some teeth to grow in crooked. Had I had spacers put in, they probably would not have needed to pull my bicuspids to straighten my teeth when I was a teen. That practice isn’t considered so smart anymore, and I know why. I had to have orthodontia again as an adult and eventually had to give up playing the euphonium because my bite kept shifting. Eventually I had to choose between chewing my food and playing.

I chose food.

Perhaps if they’d had an Institutional Review Board back then, my dad would have felt more comfortable allowing me to be a part of that experimental treatment.

IRB review and oversight is a terrific way to know whether a new treatment is being properly conducted and properly supervised. These groups, often situated at universities and medical schools, make sure the treatment experiment is scientific and ethical.

Mark and I agreed that if a university was ever studying something related to autism and we could participate, that was how we’d help Sam get access to new services and ideas. We were part of a terrific sibling study that I think went a long way to helping Sam and Michael be able to play together as boys and tolerate each other as teens.

We also had Sam in a case study, which eventually became a published paper.

One time, we thought we were participating in something bold and new and scientific, but as we got deeper into it — auditory training it was called back then — we realized it was bogus and we bailed.

Look for the IRB label.