The Perils of Perseveration

The last two weeks we invited another child, whom I will call Dmitri, on the autism spectrum to participate in Singularity's ABA therapy. We have known Dmitri from a bit of a distance, ever since he and Singularity attended the same preschool. Dmitri is 10 years old. Dmitri 's mom and I belong to the same group of moms of kids (all boys, averaging about 10 years old) who are on the spectrum. 

I believe that Dmitri 's official diagnosis is, under the old DSM, Asperger Syndrome. I guess that I assumed that Dmitri would, therefore, be less affected by autism than Singularity and be more like Edison. Spending time with Dmitri reminded me (yet again) that if you've met one autistic person, you've met one autistic person. They are all so different! But I was surprised to see the ways in which Dmitri  is affected by Asperger Syndrome. 

When I saw Dmitri two weeks ago, he came into the house and immediately took my hand and wandered around looking at our house. I was very surprised that he he took my hand and didn't let go. Does that mean that he felt comfortable with me? It wasn't wrong, just unexpected.

Dmitri and Singularity share a special interest in the Wayside School series by Louis Sachar (books and an old Nickelodeon animated show which is now only available online). We, the two moms, thought that this might be the seed for a friendship between the two boys. 

Another of Dmitri 's special interests is another animated cartoon. After their conversation about Wayside School had run its course, and we had determined that Dmitri prefers the books, while Singularity prefers the animated series, Dmitri was asked to share something else that he enjoys, so we all watched an episode of his favorite cartoon. 

So, last week, on Dmitri 's second visit to Singularity's ABA session, Dmitri became extremely stuck on his favorite cartoon. When it was time for him to leave, he really, really, REALLY wanted to know who my favorite character was. Between you and me, I don't have much of an opinion about the characters, as I had only seen three episodes of the show. I told Dmitri that I would need to think about it and maybe watch more episodes and then give him my answer the next time I saw him. He asked me several more times, and I just didn't have an answer. 

And he started to melt down. I didn't know what to do. Should I make up an answer? Should I just reassure him that I would give him an answer the next time I saw him? I think that I know what I would do with my own child, but I do not know how this other child works! I looked to his mom and at our behavioral interventionist for some guidance, but they didn't seem to know what to do either. 

(stock image from www.dreamstime.com)

And before I knew it, Dmitri had kicked, hit and bit me! 

At that point, Dmitri 's mom hustled him out of the house, so that he could calm down. He returned a little while later with his younger brother, to apologize for biting me. Which he did, and then insisted that I tell him who my favorite character was. (Incidentally, his 5-year-old brother told me that Dmitri had called me a "stinky asshole." It was all I could do to stop myself from laughing at that!) I tried to assure Dmitri that I wasn't upset with him, and I reiterated that I will tell him who my favorite character is the next time we meet. And he told me that he didn't trust me. 

Sigh. 

This episode was interesting for so many reasons. For one, it was a change of perspective for me to be the person the child's outburst was directed toward, rather than the parent of the child having the meltdown. Is this what it is like when others see Singularity during one of his infrequent meltdowns?

I also thought about the process of apologizing for wrongdoing and feelings of shame and humiliation. I was reminded of something that Carly Fleischmann wrote in Carly's Voice, which is that at the time she is in the middle of an outburst she does not have control over her actions. She knows that she is doing things that she is not supposed to do and tries to prevent herself by doing other things, such as head banging. And she is utterly mortified and ashamed when she breaks things or is aggressive toward others. 

I think that it is nigh impossible to get any kind of apology from a person - autistic or not - in the midst of a meltdown. I also think that trying to get an apology from a person in this state of meltdown adds to the humiliation that person may already feel, and I do not want them to have to feel any worse about what they have already done. I think that it is better for the person to be allowed to calm down and to let some time pass before discussing the unexpectedness of what they have done. 

Dmitri, I forgive you for biting me. I like you, and I am looking forward to getting to know you better. I hope that you will come back to our house soon. I wish that I had read you better and just told you something to ease your intense need to know. 

Listening to our children

It's a long story, about which I may write in more detail here someday, as to why Singularity does not want to be cared for by his father and my husband, Klailklop. It has mostly to do with Singularity's emotional view that his father is dangerous, probably in what some people would call an Oedipal way. This conflict between them has been long-standing and seemingly intractable (adjective: not easily managed, controlled, or solved). 

From October 2012 to March 2013, Singularity would not even speak to Klailklop. And since October 2012, I have been almost solely responsible for getting Singularity through all of his daily routines, with some behind-the-scenes support from Klailklop:

• waking Singularity up
• reading to him in the morning
• making sure that he gets dressed
• brushing his hair (Stop pulling!)
• feeding him breakfast
• dropping him off at school, on time if we're lucky
• picking him up from school
• helping him to do his homework
• participating in his special interests
• feeding him dinner
• helping with bathing
• making sure that he gets into his pajamas, 
• hanging out with him during his bedtime snack (and often also participating in his special interests)
• overseeing the nightly toothbrushing ritual (he calls it "teuge", pronounced in the French fashion)
• getting him into bed
• reading to him at bedtime
• taking him to all appointments (occupational therapy and speech)
• taking him to all play dates
• supporting ABA sessions in our home

I guess that the parent of a more typically-developing child this might not sound like such a big deal, but each one of these routine tasks requires all of the creativity and patience I can muster. Singularity is one tricky kid. 

If I have had any kind of event where I needed to be away from the house while Singularity and Klailklop have been home together, I have needed to get a babysitter. I have been on a very short leash. At times the burden of responsibility is almost too much for me, but my love for Singularity has helped me to get through it. 

It's not as if we haven't made any headway with the situation. Singularity and Klailklop can peacefully coexist for a limited time on their own. They even have things to talk about with each other, and Klailklop is doing a beautiful job of trying to enter Singularity's world. I don't really know anybody else who would, for example, learn the cubes of all the numbers between 1 and 102 or the list of all 52 episodes of Nickelodeon's Wayside School series. 

Having Singularity learn to tolerate longer periods of time alone with Klailklop has been one of our ABA goals for a long time, because of course it is not reasonable or fair to me that only one of his parents can effectively act as a caregiver. Toward that end, Klailklop and our behavioral interventionist have been picking Singularity up at school for the past few months. 

I'm never there to observe, but I'm told that things look kind of up and down to the outside observer. There was a short period in November where Singularity could follow the 3 rules: 1) Keep all body parts to yourself (i.e., no hitting, kicking, or biting); 2) Stay with the group; 3) Only say nice things. But lately he hasn't been able to do so, even when offered a very powerful reinforcer for doing it.

What I know firsthand is that there has been a steady crescendo in the intensity of Singularity's complaints about these pick-ups. And this week, it just got to be too much for me. I let the ABA team do the pickup with Klailklop one more time, with our program supervisor observing from a distance. There was hitting and running away from the group. 

Yesterday I told our program supervisor that this isn't working for me. WE NEED TO TRY SOMETHING DIFFERENT. I can't stand this any more. My child is trying to tell me something, but the ABA team has done nothing but divert him when he starts talking about it. I am not willing to tune him out when he is trying to communicate his needs to me. 

I am listening, Singularity. Please help me to understand.

***

Has anyone out there in the blogosphere gone through a similar situation? Are things better for you now? If so, how did you turn things around? I would love to hear from you.

It is OK to talk about autism

Happy new year, everyone! Things got a bit intense during our holiday period and the time afterward, but I think we are back on track now. Except for the date. See below.

Singularity is still creating his interesting installations. Here's a series, featuring a blue silicone mini-potholder that reminds me of Kermit the Frog:

He gets around, blue Kermit does! 

Singularity has a new friend, whom I’ll call Edison. Edison is one year ahead of Singularity in school. Singularity has known Edison for several years, but they never became friends until this year. Edison also has autism and had been feeling sad that he didn’t have any friends at school. Edison’s mom and I had been idly talking about getting them together for months, and when we finally did they both hit it off. Enjoyed spending time together. (I’ve been explaining colloquial expressions a lot lately.)

Edison has been joining Singularity in his ABA session one afternoon a week for the last couple of months. They both have things to work on, although the sessions are oriented toward Singularity’s needs. The sessions have been going well.

So, Edison wanted to know if he could have a sleepover with Singularity. I think that in Edison’s mind their relationship wasn’t a true friendship until they had had a sleepover. We scheduled one for the first weekend of the new year.

Incidentally, Singularity was not happy about the coming of the new year. There is a self-care task that I had told him he would have to learn to do in 2014, so he decided that the way to avoid learning to do it is to make 2013 last forever. Today's date is December 47, 2013. Singularity has such a clever mind that he comes up with these convoluted work-arounds. I should know by now that we should never attach a goal to a calendar date. That may work for other children, but not Singularity!

Anyway, the sleepover went really well. Singularity and Edison slept together in the fold-out sofa bed in my office, and Edison’s mom slept in Singularity’s bed (the most comfortable bed in the house). We mostly adhered to Singularity’s bedtime and wake-up routines, but I had told him in advance that our bedtime and wake-up reading would be different, because Edison probably wouldn’t enjoy reading Holes (bedtime) and Harry Potter and the Order of the Phoenix (morning) if he hadn’t been reading them already. What we did read as a few profiles from Different Like Me: My Book of Autism Heroes. This felt momentous, as this was a book I thought Singularity would resist.

One of the great things about Edison is that he loves talking about autism. I think that he has integrated his autism into his sense of self. Having a conversation about autism with Edison normalizes the subject. There are others with autism, and it is a perfectly natural thing to talk about. The title of that book is wonderful: Different Like Me. I wonder if it is a kind of relief for Singularity to be with other kids with autism. This isn’t something he talks about, at least not now.

The wonderful thing about the boys’ friendship is that it brought me a new friend in Edison’s mom. After the boys fell asleep we stayed up for hours talking. She’s different like me, too.