I was under a lot of pressure after my sister and brother in law died and I became guardian of my nephew Dmitri in 2011. According to his current school psychologist he was suffering from institutionalized autism as well as being born with Trisomy 21, Down Syndrome. He was and remains non verbal. He wouldn’t make a single request for anything. When I say that, I mean, he was 9 years old, an orphan, moving from Virginia to California and lacked the skills to tell me what he’d like for lunch. He couldn’t focus. I’d watch him peep out of the corner of his eye at his TV for approximately five seconds. He wouldn’t follow instructions. He wouldn’t make eye contact. He was trapped in his own little world.
So I began to nurture this beautiful little child, the only precious remainder of my sister, my best friend, the one person on Earth who really knew and loved me. Mainly it involved picking him up when he would defiantly plop himself on the ground, which was a common occurrence. It wasn’t until years later that I realized that many, many individuals with intellectual disability do this. I guess when you can’t talk, it’s your only way to say “I really do not want to do this, and also fuck you.” (Maybe the fuck you is only for some circumstances, who can say). There were doctors appointments, school interviews, phone call after phone call, guardian ad litem, court, lawyers, health insurance, school transcripts, medical transcripts, prescription medications. God when I think of the sheer scope of all of that on top of handling my sisters estate and probate, plus my own family and successful business I can’t really understand how I did it all.
But something about Dmitri changed my heart in a radical way. I sat looking at him, rocking back and forth, humming, totally cut off from the rest of the world and I had this daring thought.
I thought, if I can love this imperfect child, why in the fuck can’t I love myself.
And so began a journey. Basically what I taught him to do, I taught myself to do. I’m not sure there has been any other experience in my life where I have had so much to learn from one person. On Dmitri’s very first IEP, of which I knew NOTHING, my request was simple. Teach my child to express his needs and wants. Well that’s pretty high reaching for an adult woman who can’t even feel her own feelings, much less express my needs and wants but that was and remains my goal for Dmitri. And myself.
We would frequently go out to eat at a kid friendly restaurant with menus for children that had photos of the food beside the names. For two years, we would go a couple of times a month as a family. We’d sit down, me beside Dmitri, Maya and Mike across from us in the booth and I’d show him the menu. Over and over again we’d go through this process. It was so rote that I didn’t even think about it anymore. We’d take our seats, they’d hand us the kid menu, I’d prop it up so he could see it, I’d ask him do you want Chicken nuggets, and point to the photo. In two years, I’d say averaging approximately 48 visits he never responded. I never thought he would respond. And yet, I wouldn’t give up on him. I couldn’t give up on him. But. Finally, he did respond. When he was 11, after being asked time and time and TIME again he did respond. He picked up his pointer finger of his left hand and he tapped the photo for chicken nuggets. Jesus Christ, he’s actually in there. AND HE LIKES CHICKEN NUGGETS.
When Ric was busy dying and I was shuttling them both back and forth to chemo/oncology or therapy Dmitri had this one truly awful, mean spirited, pregnant speech therapist. He didn’t like her (and I can certainly understand why). So when she would ask him to complete a one step task, ANY one step task, he would distract and upset her by grabbing her name badge and pulling, or taking the small book and throwing it on the floor. I sat through these sessions, quietly, watching him. I had no authority over his life at this point because his father was still alive but everyone knew I was going to become his guardian and care for him. The speech therapist looked at me and said I shouldn’t bother and it would be easier for everyone if I just went ahead and institutionalized him.
If you want to piss me right the fuck off, go ahead and tell me something I’m trying to do is impossible. She’s lucky that Ric was still alive and I didn’t have the full authority to really show her what this angry southern woman looks like. I politely gathered our stuff and got the fuck out of there as quickly as possible, horrified by what she had said.
He completes three step tasks easily now. I decided at some point if he was ever going to use an assistive device to communicate I’d start by getting him to use i electronics. He did the thing where he’d gaze at the idevice out of the corner of his eye and quickly move on to the next thing. I tried over and over and over again, similar to the kids menu. I’d show him my iPhone. He’d look at it and walk away or push it away. Ad nauseam. One day we were on a field trip at the bowling alley. I had been snapping photos of him all morning. I decided to try a selfie, so I leaned forward and captured both of us in frame. Then I had a thought, what if I handed it to him in selfie mode, would he touch it? I’ll be damned, I put the phone in his hands with the camera reversed and he didn’t bat it away. He didn’t get up to do something else. He saw himself. HE SAW HIMSELF and started touching the phone. Finally I knew it was possible to get him to use an assistive device because he sat there playing with it, unprompted for a long period of time.
Now he points when he wants something. Or bugs you until he gets what he needs. He’s not reluctant to share what his needs are, through his sign language approximations, pointing at an object or physically retrieving the object to let you know what he wants. He’s regressed a little on iPad communication but still uses it to say hi and bye and to regularly know he intends on seeing Mike. When he gets into Mike’s car he queues up the restaurant he would like for dinner. “I would like Wendy’s please” when he gets into the car. He uses the iPad differently with different people because any person interacts with different people a little differently. He points at balloons (I want a balloon, goddamn you). He points at apple juice (GIVE ME THIS APPLE JUICE NOW OR ELSE). He hovers in front of you until you fix his Netflix so he can watch Reservoir Dogs. He is relentless until he gets what he wants.
The last two years in the IEP meetings they tell me things like “you saved his life. No one else on earth believed in him but you” and “you provided an environment for him that caused these successes” and “you changed the course of his life.” We went from a professional opinion of “he belongs in an institution” to “he can have a job one day.” Watching him learn and grow and leave the protective shell of non communication gave me the courage to communicate as well. If this precious, beautiful, non communicating child can express his needs and wants then so can I. I watch him push himself to do things that make him uncomfortable every single day for progress. So I can push myself to do the things that make me uncomfortable every single day, for progress. I watch him immerse himself in the moment into absolute bliss. I can try to do that too. He is my teacher and my zen master, my child, and my sister’s child. He teaches me humility, perseverance, strength, patience, courage, empathy, self love, the ability to show the world exactly who I am, without shame. He is everything and I am so thankful for these lessons and our life together.