Wednesday, August 31, 2005

Seeing Robert

When I found out that Robert was coming home, I felt I had to see him this time around. He was going to be visiting with his family for two weeks this summer, and I didn’t want to miss this opportunity to see him face to face. Over the years I had heard from time to time that he was coming home, but for some reason this time I felt a sense of urgency. I don’t know if it was my needing some sort of closure, or if it was because I had heard so many wonderful things about how he is doing now. His mom told me that just this year he began signing spontaneously, perhaps picking it up from some of his friends. I had seen a picture of him about a year ago, and I thought he really looked like Adam Sandler, only skinnier. I wanted to see if he really did look like Sandler, or if the picture was lying. I heard he had gotten very tall (over six feet, just like his brother, the Aspie engineering major), that he was awfully silly these days, and that he had learned how to say “no.”

A few years ago, Robert moved out of his home and into a residential facility. At first, the transition and visitations were hard on him. I remember the first time he came home for a visit, he seemed very unhappy, maybe because he was somewhat disoriented, not knowing which place to call “home” anymore. I remember vividly the frantic phone call I got from his little sister. She asked me if she could come over because Robert was really upset and she was scared. I said she could, and eventually he calmed down and his sister was able to go home. At this time, Robert was still squeezing his mom’s arm too hard, and he was making a lot of sad noises. I felt bad for him and hoped that he would eventually settle into his new environment.

After the initial rocky start, it didn’t take too long for Robert to get used to living away from home. His mom used to tell me stories about how she would bring him his favorite foods, and how much they enjoyed each other when she would come up to visit him. He seemed happy when she was there, but also perfectly fine when it was time for her to go. He had made friends, and the staff considered him to be one of the easier residents. Unlike many of the other boys, Robert is fully independent with toileting and other self-help skills. His mom believes Robert benefited from years and years of applied behavioral analysis (ABA) in that respect, because the boys who do not have toileting skills never received ABA therapy. She could be right. I don’t know. This is a subject that is painful for us to talk about, because our boys had such different experiences and different needs. She is mostly a believer in ABA, and she told me she wished she could have started it sooner with Robert, preferably by age 3. After 2 years of doing ABA with my son, I came to the conclusion that ABA was seriously flawed, and that it had harmed my son socially and emotionally, even though I couldn’t and still can’t prove this to anyone. She told me once, choking back tears, that if she had started ABA with Robert early, perhaps Robert could have ended up like my son, who is verbal and now considered high-functioning. Robert is labeled low-functioning and severely mentally retarded. I just stood there. I didn’t know what to say. I felt a great deal of empathy for her, but I didn’t know how to show it. I still don’t. I felt a kind of “survivor’s guilt,” even though there is no proof that ABA—if started at age 3—would have turned Robert into a boy resembling my son. And yet, that is a feeling she expressed to me, and I still don’t know what to do with it. I feel bad for anyone who is living in a state of regret. This must be a terrible feeling.

She told me that Robert used to be able to label everything, but he never got past the point of saying nouns. Eventually he lost the ability to speak at all. I never knew him when he was able to speak. When we moved into this neighborhood twelve years ago, his speech was already long gone. I think he was about 4 years old at the time. I was pregnant with my second child, and my oldest was 21 months old. The boxes weren’t even unpacked yet when I bumped into Robert and his mom. Robert was riding around the block in his Big Wheel, and before I knew it I was getting a crash course in autism. I observed Robert trying to climb a metal pole on the corner. We have a corner house, and this pole is the one that has the names of the two cross streets. You can’t really climb it, but he was determined, and he got halfway up while we were talking, that first time we met.

I didn’t know what to make of Robert and his mom. I could see that she was very intense right from the start. I kept trying to get away. Autism was making me uncomfortable. Talking about her autistic son was making me uncomfortable. Every time I ran into her after that, all we talked about was Robert and Robert’s autism. I started tuning out and being polite—there, but not really there. I could not relate to anything she was saying to me. I had no real interest in and certainly no understanding of autism. The only autistic person I ever saw was Robert. I couldn’t help but wonder why mom was so absorbed in Robert and never really talked about her other kids all that much, or so it seemed to me. Robert had swallowed up that family, I thought. Wouldn’t her time be better served devoting her energies to her other two kids, who had so much more promise?

You could say I was heartless, and I think I definitely was to a point, but I would say that my heartlessness was driven by ignorance. Twelve years ago, autism was not even something that happened to “other people.” The face of autism was Robert and Rainman only. I personally knew no other autistic person besides Robert. But even in my complete ignorance, I still observed him (without making much sense of what I was observing) and took mental notes. I remember how he used to crawl on the ladder on top of the swing set and wouldn’t come down. I remember how he used to play in the sandbox at length, well past the age when kids play in sandboxes. I remember that scary day when he disappeared. I was in my back yard (we live two doors down from them), when I heard his mom scream “Robert!!!” so loudly and frantically that I froze. This was a different kind of “Robert scream.” Something was terribly wrong. His bike was on the sidewalk, but he was gone. Eventually he turned up in a neighbor’s kitchen, eating cookies or something, but it drove home how vulnerable he was, not being able to speak and being easy prey for a child snatcher.

About three years after we moved in, my son—the one who moved into the neighborhood while still in my belly—was diagnosed with autism as well. I felt I had been cursed for being so heartless toward Robert and his family. This was my punishment for not wanting to talk about Robert all the time, and for being nervous that his mom was going to bring Robert to my other son’s birthday party and ruin it. I remembered my grandmother’s admonishment to me like it was yesterday. I was griping that she shouldn’t bring Robert and asked, rhetorically, why she always had to talk about Robert. She just turned to me and said in the softest voice, “But she’s hurting, Lisa.” This stung. I think this was the turning point for me, even though I didn’t realize it at the time.

When my middle son was diagnosed, I wrestled with God. I cried—a lot—for many years until, over time, I realized I had not been cursed at all. I didn’t think I had been exactly blessed yet (this feeling came much more recently), but I started thinking that of all neighborhoods for God to put me in, wasn’t it great that He put me next door to a family with two kids on the autism spectrum? Wasn’t it better that I actually had someone to talk to and share stories with, someone to support me and for me to support through friendship and understanding? Wasn’t this better than being out in the boondocks somewhere? I started warming up to her, and she to me. Over time we became friends. Gone were the days when I shut her out and only pretended to be listening about Robert. I wanted to know, and I was genuinely interested in and concerned about everything he was doing. I had a bond with her that I could never have with any of my other neighbors. Our sons had forged that relationship, even though they ended up taking different paths as they grew.

My son’s ABA was abruptly cut short one summer afternoon, when he screamed that he didn’t want to “do this anymore,” flipping his table upside down and scattering his materials all over the floor. He ended up entering and being kicked out of several school programs before finally, by around third grade, aggressing less and less and doing better and better in school. This year the district is attempting full inclusion in a regular fifth-grade class, with autistic support for two academic subjects and social skills. We are all hoping this is a turning point for him, and that he will be able to function in a class that is four times the size of the self-contained class he was in last year. It is going to be a drastic change.

As Robert got older, I noticed that his vocalizations sounded more mournful. I could hear him in the back yard, swinging and making loud, moaning sounds. His mom told me that as he got bigger, she was getting bruised up quite a bit. I remember when he broke the refrigerator door off the hinges and ripped the sink out of the wall. She told me he was beginning to show signs of depression. He needed to be around other kids his age, and he needed things to do throughout his day. There was no way they could meet his needs at home, and they eventually made the decision to put him in a residential placement. They were extremely fortunate to have found a place not too far from where they live, making frequent visits more than doable.

When I found out that Robert was going to be moving out, I had very mixed feelings. On the one hand, I was happy that they had found a place they liked. I was happy that they were going to get a much-needed break, and that they would now have more time to spend with their daughter. She was always so quiet, but now she could take the spotlight, being an “only child” for the first time, with both of her brothers out of the house. The oldest son was away at college, and now Robert was going to be leaving soon. On the other hand, I felt a sense of loss. No matter how hard it was over the years, he was still the boy next door to me, the little 4-year-old boy who climbed my pole all those years ago. Even more, to me he was the 10-year-old boy who used to stop in front of my house and hug me whenever he would see me while out walking around the block with his aide. I felt lucky that he wanted to hug me.

When I came to see Robert yesterday, I was filled with anticipation. Would he remember me? Would he want me to leave? Would he hug me like he did all those years ago? My youngest son and I walked into the house, and things still looked very much the same. The house had been ravaged by all the years of Robert living at home, and the Aspie dad was still making it hard to clean up for any stretch of time. Mom tried recently, but despite all her efforts, the “collections” were starting to pile up again. I didn’t care. I was there to see Robert.

I walked in tentatively, not knowing exactly what kind of response I was going to get. He was sitting on the couch in the family room. He was kind of in a frog position, with his feet up on the couch and his bony knees pointing upward on each side. I could not believe how big he had gotten and how hairy his legs were. It was a shock to me because perhaps I still saw Robert as the little boy who used to finger-paint ketchup on the kitchen table in the next room. As soon as he saw me, he pulled his shirt up just below his eyes and started peeking out at me, giggling. I smiled at him and said hi. I was glad he was not upset that I was there, but I soon realized that I was taking away his one-on-one time with his mom. Before I got there, they had been sitting on the couch together, holding hands. All the time I was there, he kept pulling her away from me and trying to get her to sit back down on the couch again. He took my being there pretty well, though, and he eventually smiled at me and laughed some. All this time I was wondering if he remembered me. I wanted him to remember me. I believe he did.

We didn’t stay very long. I let my son feed their bird a “cookie” (it was actually a stick of some sort with bird seed on it, but that’s what he called it), and then we went back into the family room to say goodbye. I asked Robert if I could shake his hand, but he didn’t want to. He pulled back a little bit, hiding behind his shirt and giggling at me. So then I just said, “Okay, bye Robert!” and he waved goodbye to me in a way that I’ve only seen Robert do. He undulates his palm with his fingers curled inward, but it is very much a wave goodbye. I was happy to have that exchange with him. As I was about to leave, he pulled mom back down on the couch, right where he wanted her. He took her hand in his, and they looked as happy as any mother and son could be.

I walked out of the house holding my son’s hand, trying to take in all that I saw and felt. Twelve years was a long time. In rapid succession, pictures of Robert from then to now started flipping through my mind. Then it dawned on me. Even though I had just seen Robert again, I was really only seeing him for the first time.

Lisa Jean Collins c 2005


At 11:18 AM, Anonymous Anonymous said...

This comment has been removed by a blog administrator.

At 4:03 PM, Blogger Lisa Jean Collins said...

Hi all,

I deleted the previous comment to preserve the identities of the people involved. The comment was fine, though. It was asked, "What is ABA?" So I inserted "applied behaviorial analysis" at first mention in this post. Most of my readers will already know what ABA stands for, but if this blog is to enjoy an audience outside the world of autism advocacy, I will have to keep in mind that not everyone knows all this autism jargon.

At 2:11 AM, Anonymous Camille said...

Hi Lisa,

Beware of comment "spam". Apparently people have figured out how to post comments that start out looking like comments and turn in to advertisements for something, they usually say thing like. "I think Autism Diva face cream is the best wrinkle cream on earth" and then they have a link to their site...

Fortunately, Autism Diva isn't selling anything.


Anyway, I have seen that there is a way to make people type in a code that is in a box, the kind that computers can't read...

I haven't had to set up that option yet, since it's been a few days since I've had any comment spam.

Oh, and I"m really happy to see your blog. I enjoy your writing.

At 11:43 AM, Blogger Lisa Jean Collins said...

Hi Camille,

Thanks for the heads up. The deleted comment was from my sister. She wasn't really aware of this whole blogland thing, so that's why she commented that way. Now she's hip to what's going on. I hope she will register so her name will no longer appear as "anonymous."

About what you said....thanks. Camille, I have three more essays in my head...what is happening to me? I feel like I've been body snatched by a writing muse and I can't break free. I have been in my head a lot these days, especially since starting this blog. I feel like I have a story to tell, to someone "out there."

At 2:49 AM, Anonymous Anonymous said...

Well, keep telling your story then because you write beatifully and are a pleasure to read. There is definitely someone "out there" reading.
This particular someone is a 21 year old Montana (and sometimes Baltimore, and sometimes Maine) ... who stumbled upon your website in the middle of the night and couldn't stop reading it. I really need to do my laundry soon. But reading is so much more enjoyable...
Anyway best of luck to you, the story about Robert was very touching.


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