“What’s Love Got To Do With It?”

We believe in serving up something honest too, so we love that about you, Culvers! From a therapy outing this past Wednesday, all photos by Ariana

Our son has what is considered to be severe Autism. Some people think that means he can’t love people, or that he doesn’t pick up on things they do and certainly that he doesn’t grasp any of the implications.

He has always loved, always bonded with others. And I have never seen him bond with someone he felt like was faking their acceptance of or comfort with him. He’s doesn’t historically respond well to fake, though right now he’s just more likely to ignore a person he’s decided is being that way. Because our son’s Autism was regressive, I got to experience smile after smile from Tony as a baby, with him constantly beaming up at me, eyes aglow. Every social worker and person connected with his case documented the obvious nature of his close bond and attachment to me. Even as a baby, he looked at me and he could recognize what I gave him: love, acceptance- unconditional.

Just a reminder, even though my son might not always test so well, Dr. Hunt’s assessment was that he likely only has mild intellectual disability based on his observations. An impression which may have been formed in part because he was able to observe Tony for years outside of a testing environment…though we were never in the same social circle, we did used to go to the same church. And if you want to know what my son is truly capable of, you need to pay attention to what he’s doing when he thinks you’re not paying attention to him or expecting anything from him.

On the other hand, he won’t bond with everybody. I have also seen him change his feelings about other people after certain things were done. And for people he does feel an affection for, he doesn’t feel equally about them…some people he clearly loves much more strongly about than others.

Tony & I practicing sitting and waiting in the community today, threw this one in here because the universe needs a picture of me with lipstick on one of my teeth and showing how my sensitivity to light can make me squint enough to show every line on my face….plus the swelling that happened on my eyelids about 15 minutes after lunch, gotta love Mast Cell Activation Syndrome 😀

I have seen him work with some therapists for a year or more and not have any sort of reaction to their absence in his life- no negative behaviors, no changes in cooperation with others, nothing. But, when he looses a therapist he loves, that once upon a time was a very different story.

When Whitney moved out of state, he struggled with reduced cooperation with everybody in his life (including me) and dramatically increased self-harming for a month. When the organization that was supervising two of his favorite therapists wanted them to work with other clients at the start of the pandemic because, as per a conversation with a representative of that company at the time, our husband’s job was in healthcare and they considered us to be a greater risk to their staff than their other clients, we were told this without any time to prepare him before the therapists involved stopped coming in. He didn’t increase self-harming, but he was so emotional about it that he had several full on bathroom related accidents the first few days.

We were so grateful those therapists themselves wanted to continue working with our family and that the organization was willing to work with us and them to get them back to doing therapy with our little man after a period of time. By the time Emily came and went the next two times, he didn’t have any bathroom accidents, self-harming was barely increased, but we did see some decreases in cooperation with all of his therapists. Over the past three years, our little man has truly been working hard to become the King of the Changes I promised him he could learn to be.

Practicing wearing his jacket today for skittles, he doesn’t like jackets and doesn’t feel cold the same way many people do.

One of the behavioral technicians that was part of the now former ABA team I am quite certain he loved her more than he loved his grandmother. I know that might be hard for some in our family to hear, but for him he doesn’t decide how much he loves someone based on a family relationship. When it was explained to him this transition was going to happen, he clutched his father’s shoulders and sobbed for several minutes. We have seen the mildest of upticks in self-harming, to the tune of maybe 5-10 seconds worth a few times a week since that day… thankfully, it’s been nothing dramatic and that has been consistent with what we’ve seen when he experiences an emotional loss over the past couple of years. But certainly, understanding his feelings as much as I can based on what he has been willing and able to communicate via his speech device about this matter, I have had to make some adaptations to how I run his therapy programs to support him as we continue rolling the progress onward and upward.

If I’m going to go any place with a small crowd, I might do what I did today and choose OrangeLeaf, a place he’s familiar with and which offers him something he finds personally rewarding to get there. Both tables behind us were filled to the max with noisy, giggling kiddos- we had to sit at the bar today. I will plan walking routes so that we are within easy distance of a bathroom. When he’s struggling with joint attention, and he has been struggling more since we entered this transition period, I will hand him items I am asking him to communicate or having him touch them and look at them (sometimes I’m going to need to point the item out to him multiple times before he will focus and answer right now). If he asks for something back that we are working on relinquishing, such as his kindle at a place we’re eating and practicing sitting at, I’m giving it to him.

Here, he is shown just after giving his dad the smallest french fry in the stack and laughing about it when his father asked if he could have one on Wednesday. He was given the kindle back because he asked for it on AAC, and typically right now we’re fading its use while he’s eating at restaurants.

In the past, we had to pull back on tasks he found more upsetting. We don’t have to do that anymore. We’re still giving denials and he’s tolerating them from me. Directional flexibility is soon to be mastered out on neighborhood walks, as he is now calmly tolerating walks with me without using any landmark pictures and responding to all directional instructions without reinforcement. For communication tasks, I am giving him skittles for every correct answer to maintain a desire to respond. And I am continuing to actively advance all of his goals. But, we might skip something like the zoo for a couple of weeks that really pushes the boundaries of what he feels comfortable with.

What’s love got to do with it? Sometimes everything…and thankfully sometimes, nothing at all.