One of the challenges of autism is not always knowing what is wrong. What triggered a crying spell or a meltdown? What could actually be bothering the autistic person? Other times there are subtle signs that something is amiss. When I’m lucky, I detect these subtle signs before things really blow up. Those are the good days!
IF AUTISM WAS A COOKIE CUTTER, IN THE U.S. WE’D NEED ABOUT 1.5 MILLION
UNIQUE COOKIE CUTTERS.
Autism parents innately learn their children’s subtle signs that a meltdown could be around the corner. Parents use that information on a daily basis to implement what can be constant subtle interventions. It becomes a way of life to a degree that maybe some parents lose sight of how constant it is. Then, the real challenge becomes transferring that skill to people outside the home. Parents get so used to the moment to moment intricacies of their subtle interventions (such as catch phrases, speech patterns, tone of voice, etc.) that those actions become almost invisible even to themselves. It is then challenging to prepare others (such as teachers, paraprofessionals, medical personnel, and personal assistants, for example) to recognize and be able to act on the same subtle signs.
Jessica’s autism includes communication challenges that are not immediately evident. In the kitchen one morning, Jess was slightly agitated. Almost in a bad mood. Without some subtle signs this would have been a guessing game for a long while.
“Mama, I had a really bad dream,”
“What was it about?” I asked.
“I don’t know.”
– “You don’t remember?”
“Yes, it was a really bad dream.”
– “What bad thing happened in your dream?”
“I don’t know.”
When learning to speak Jessica language, know that Jess saying, “I had a bad dream,” means she is worrying about something. It does not really mean that she had a bad dream. Sometimes she will even say, “I just had a bad dream,” or, “I’m having a bad dream,” while she is and has been awake. In those cases, she might or might not say what her ‘bad dream’ is nor what she is worrying about.
Enter the iPad
A few years ago an iPad entered into Jessica’s life. Her ability to independently use the iPad to stay in communication with friends and family has been a huge blessing to her. Like other young adults, sometimes she uses it to send me messages when I am in the next room, just down the hallway, or in bed sleeping.
Earlier on the morning of the ‘I had a bad dream’ conversation, I was gently awakened by some sweet text messages. At least this time it was almost 7 a.m. as opposed to 3 a.m. like last week. The statements, ‘may Abby eat’ and ‘my dog is hungry’ translate to, ‘Is it time to get up?’ which in turn translates to, ‘can I finally come out of my room and act like it’s daytime’.
The second text I got from Jessica that morning held the first subtle sign of the day. She asked, “I’m going to have her on Christmas Day, right?” The clue in that question? Consequences. When I read that I briefly wondered if she had been breaking an important rule. Then, I dismissed that thought because she has been doing so great about not breaking that particular rule.
The Toilet Paper Party
I got out of bed and headed upstairs for the morning. Subtle sign #2 was in the bathroom. The toilet was full of toilet paper. As in, no visible water, because it had been absorbed by a bowl full of wads of wet toilet paper. Probably a whole roll. The toilet paper looked clean and unused. This happened one other time. I tried to recall what it was that time, but it was too early and I hadn’t had my coffee. Plus, I needed to find gloves, get a plastic bag, and fish all the tp out of the toilet so that I could pee.
Jessica denied any particular reason for the toilet paper bomb other than needing to use the bathroom a lot during the night. Hmmm. Something was off, but I was still not sure what. She apologized for the toilet paper and said she won’t do it again. Jess followed me into the kitchen to make coffee and start breakfast.
THE FINAL CLUE
Remember the kitchen conversation about the bad dream? Insert that conversation here. Immediately after that incomplete conversation about the dream, Jess handed over the final piece of the morning puzzle. The third of the subtle signs. She asked me if I remembered those knee-high socks that I got for her to wear to help her remember to not pick her skin on her legs.
Why, yes, I do remember those socks. Do you need me to get them out for you?
Jess answered that she did want me to get the socks out. When I asked her to show me the place on her leg that she needed reminding about, she said, “Don’t worry about it.” Then, she showed it to me. She had been picking her skin during the night. Thus, all the toilet paper in the toilet was from dabbing at it to stop the bleeding and cleaning up blood.
She told me later in the day, “Mama, I had a new bug bite and you didn’t know it.”
So, what does all of this have to do with the text about getting a dog on Christmas Day?
For some crazy reason in a weak moment, I agreed last year that we would get a dog in December of 2016. Every day for the last 240 days I have been asked, “Mama, what are you going to tell me Christmas morning?”
Recently, when we were having such a hard time getting her to stop picking her skin, I told her that as a consequence, for every day she picks her skin we were going to wait one extra day to get the dog. Then, as a reward, for every week she went without picking she could earn a day back. This system had been working perfectly and all of her scabs had healed.
I think because I saw those subtle signs along the way, I eased into the realization that she had experienced a skin picking setback. Instead of getting upset and having a strong reaction, I stayed very calm and immediately told her I wasn’t mad and that she wasn’t in trouble (those are important de-escalation words in our home.) We got the thigh-high socks put on and talked about losing the day and how to gain it back. That was the end of that (for now).
AUTISM PARENTS BECOME THEIR CHILDREN’S INTERPRETER
Parents know that they can be an interpreter for their child, but sometimes that action is seen by professionals as interfering, coddling, and babying. Parents are given an IT’S OKAY, WE GOT THIS attitude. Sometimes, parents forget they are the experts for their own child and give in to that attitude. Next thing you know, bam…plans, rapport, emotions, trust, happiness…out the window for parents and child.
Becoming an interpreter for our autistic children is a skill that is developed. We have to step back and analyze our daily actions. We have to examine cause and effect, what works and what doesn’t. Although some of our own subtle interventions may have become second nature, it is important to make them purposeful so that we can teach them to others with confidence.
PARENTS ARE THE EXPERTS ON THEIR OWN CHILDREN – BE CONFIDENT
Wow-I really enjoyed this piece–I think it is difficult for most people to understand that what is being said and what it means typically have a weak line of correlation. How hard it is to get others to understand that understanding our kids’ messages are more than just understanding the words themselves.
Yes! That perception by so many that saying words = ‘normal’ communication — NOPE. Not in the least. It goes so so much deeper and is SO individualized. I’ve referred to myself as Jessica’s interpreter for years for that very reason.
Thanks for the note JK/JL
It’s funny… when I read, “It becomes a way of life to a degree that maybe some parents lose sight of how constant it is,” I smiled. Part of snarky me wanted to opine, “You mean, everyone doesn’t live like that?” I can so relate to how intensely honed my skills are in knowing the minute Sam comes down the steps in the morning where his mindset is for the day, and shift/adjust accordingly. I am THE MASTER at redirecting potential really crappy starts to his day. When his anxiety is escalating, he’ll start “poking” at me… trying to goad me into responding to him and his annoyance. I’m a ninja master of neutrality, I am. Most often, there is no real reason for his mood, and I don’t ever expect him to be able to articulate exactly what is going on in his brain. What matters to me is that I can diffuse it and turn it around, which I most often can after 21 years of dealing with autism. I can give some tips to others, but I really think that it’s a Vulcan mind meld with us at this point. I am so sensitive to it, and am thankful that the older he gets, the easier it’s been to hold him accountable and responsible for calming himself down.
Jayne, “Mind Meld” is a good description. It often feels as if Jess and I are the same person.
Val, this blog was articulate, relevant, poignant, and, well, mind blowing. I have been near you for almost thirty years, and you are just revealing the tip of the iceberg.
Thank you Mrs. Anonymous!! You know how I have always liked remaining understated 🙂 I’m working on changing that. xoxoxo