Autism Key Part 4…Gold Nuggets of Wisdom
So for my final blog regarding Elizabeth, I am writing about simple successes. I often get asked about Elizabeth’s diagnosis. She was diagnosed profoundly autistic. As she has gotten older (around 4-5th grade), her diagnosis changed high functioning. I get asked often, “How did that happen?” My gut answer is “luck” or “I’m not sure.”
However, key decisions made a huge difference. Some are big changes and some are small, but I believe together they have optimized Elizabeth’s experiences:
- Early Intervention: I shout this from the roof tops. In my case, I elected to have Elizabeth enrolled intense occupational and physical therapy. When she reached the age of three, I enrolled her in a “peer” modeling program. At the time, this was not considered a standard of care for autism (meaning no insurance payment). So I worked two jobs and missed time with my youngest child to pay. In spite of the absent parent guilt, it was worth every penny, because it’s a solid teaching mechanism. Autistics mimic actions and people excessively. I believe in the peer model program so much, that I put Megan as the peer model in the program for other autistic children. I believe this also helped Meg become more empathetic toward her sister.
- Never Under-Estimate Leveraging Obsessions: I remember that I was down to the wire. Elizabeth will be mainstreamed into kindergarten. She could do everything, except potty training. She would not go number 2 consistently at age 5. In fact, she had chronic constipation from birth. I was desperate. So, I leveraged her obsession. Elizabeth’s first word was blue. Not Mom, not Dad, but blue. So, I placed blue M & Ms on the back of the toilet and she could only have them if she went number 2 that day. She was fully trained and ready for school in three weeks.
- Think Outside the Box: There are many different ideas regarding mainstreaming autistic people. I respect every parent’s opinion. My personal belief is that Elizabeth had to learn to adjust to the real world if there was any chance for independence. To that end, I always had personal goals for Elizabeth related to key “soft” skills that she would need. I know that sounds like too much for the parent and the kid. But, I pushed hard. In my mind, failure was not an option.
One key soft skill was eye contact. Autistics find it overpowering and intimidating. So I shamelessly leveraged the blue obsession and wore a blue sticker on my chin for a solid year at home. She couldn’t stop herself from staring at the sticker on my chin. So I played with her with my crazy blue sticker chin in the evenings after work. Before long, I had her trained to always look there. The result, you think she is looking at you but she is looking at your chin. Eye contact problem solved.
- Annual Goals: It can be overpowering if you focus on the autistic mountain you must climb to any adult independence model. I don’t think about it often. Instead, I create a document of five incremental goals every year during the last week of December. I do this knowing that mastering these goals will push her one step closer to independence.
I have done this since diagnosis. One year, I focused on finding the optimal diet for her ticks. Another year, it was learning eye contact. Another year, I focused on group activities and interactions. It keeps both of us focused and not overwhelmed but we still have our eye on the prize. I say “we” because Elizabeth and I now focus on this together since she is nearing adulthood.
Elizabeth’s and my ultimate goal are the same, financial and personal independence. We march to the same drum. I want her to be happy and feel satisfied with life, like all parents. She is head strong, bold, brave, voraciously intelligent, and has a sweetness that melts my heart. The key is to trust your gut and find a road that works for you. This is just one story and what worked for us. So many locks, so many keys to try.
As always, please leave questions, comments, or other topics of interest!
“See” you next week with a new topic!
