My son and I met three years, three months and 20 days ago. But I just started to get to know him.
You see, when a child gets an autism diagnosis, there is a lot of jargon about living in the world of autism, and treatment being focused on teaching your child to let you into “his world”. You learn to see your child through this veil of autism. I would look at him and wonder what was going on in there. Like he was in a cage called autism, and the door was locked from the inside.
I felt like my child was alone even when I was right there next to him… even when I was holding him in my arms. He was somewhere I couldn’t go with him, and that was not ok with me.
Aaron and I started right away trying to find ways to get him to “let us in” for a little while. Aaron was especially good at this. They would play and play and play. Without even realizing it, he was doing the best kind of therapy there is. Tag, chase, hide and seek – all things that forced Lukas to interact, and all things that he loved to do. Aaron turned into the chaser, and I became the safe zone. Lukas would take my hand and we would run away together, or he would run to me and jump into my lap, laughing like a hyena. I thought this was great until I realized that Lukas was not playing WITH me, he was using me. I was a tool or an object. Safe. He was interacting with Aaron, but I was only partially in his world. That just wasn’t good enough.
We were doing all the things that all of the “experts” recommended and we were seeing some progress, but something wasn’t right. I always had this feeling that I was raising a stranger in my own house. I was done waiting for Lukas to let me into his world, it was time to start bringing him into mine.
I can’t tell you how this happened, what techniques I used, what changed. It was all subtle. It wasn’t methodology, it was attitude. I stopped treating Lukas like he was a patient and started treating him like a little boy. We did a lot of the same things, but I simply refused to interact with the autism. I would literally say out loud, “let go of my son, he is mine and you cannot have him anymore.”
I pushed his providers at preschool to challenge him, to not accept certain behaviors. I am an educator and I work in special education, so I KNOW that kids with special needs are held to different standards. Why? It is one thing to respect a child’s abilities, but regardless of what level those fall on, every single child should always be expected to do THEIR best. Too often we water down expectations before we even give children the chance to succeed.
I started kind of being a hard ass at home. Lukas would take my hand and lead me to something when he wanted it, but I wasn’t allowing myself to just be a tool anymore. I pushed for that recognition as a person. So instead of just being led to what he wanted and complying without question, I simply started doing more interacting myself. “Oh, do you want something Lukas? What do you want? Do you want a drink, are you hungry?” I kind of played dumb. It seems so crazily simple, but when your child isn’t interacting with you, it is so easy to stop those interactions yourself and just kind of go with the flow. You know what your child needs, so you just get it, you just do it. You meet the needs without question because that’s what parents do. It was so hard at first because I felt like I was being mean to him, but I started telling myself, it is autism I am fighting here, not Lukas.
Now there is a fine line here. Jenny McCarthy wrote about sitting outside a door for forty five minutes, through tears, screams and tantrums, until her son attempted to say “open”. Lukas is way behind in speech so it is important to me too, but speech is just the icing on the cake of communication and I don’t want to stifle pragmatics by forcing words. I do encourage language and Lukas’s communication has soared in recent months, but I think it is more because we have started being over zealous with our side of the interactions instead of being objects acted upon.
So… This, and a tremendous amount of hard work by my heroic son, has opened the cage. I know who Lukas is. I see him every day when he runs around the house, dragon toys in each hand, roaring and flying and falling with dramatic “whooaaaa, oh no, help me” crashes to the floor as one dragon defeats the other. I see him when it’s bed time and he runs into my room and jumps into my bed and lays down in my spot and giggles uncontrollably while I pretend I don’t see him and lay down to “squish” him. I see him when I tell him ‘no’ and he looks back at me with an evil grin to make sure I am watching while he does it anyway. I see him when he “gets” his Daddy with a “sneak, sneak, boo!” I see him. More and more each and every day, I see him.
There is no more stranger in my house. He has done so well, so quickly, that his case manager said in our meeting last week that she would not be surprised if Lukas outgrows his diagnosis. Whether or not that comes to pass only time will tell. But that doesn’t matter to me. What matters is that my little boy runs up to me when I pick him up from school, throws himself into my arms and says “Lu yoo mom,” while I steal a kiss. What mother could ever wish for more….