Every parent touches the rounded belly of pregnancy and wonders about the personality that is going to emerge from that little guy or girl. We dream about funny things he or she will say, whether they will say mom or dad first, and the sweet moment when they say “I love you” for the first time.
In those parental fantasies, there is no room for Autism. There is no expectation that those dreams may not come true for that child. Your baby is born and you count the weeks and months just like you did during the pregnancy. You watch for the milestones and count them off. At two weeks, they lift their head for moments at a time. You can check that off the list. At about three months, they are rolling over on their own. Check. At six months, they are sitting up for moments at a time without support. Sure, they are really wobbly, but that’s what makes it so cute. Check. For some children on the spectrum, there is speech at the appropriate time and then that goes away without any warning. One day they are chatty, the next they are not. At least, that is what I’ve heard. Joel never spoke past babbling. He met his physical milestones, despite being very small for his age. Except on very, very rare occasions, he does not speak regularly, nor has he ever.
And, those rare instances didn’t start occuring until he was enrolled in school last year and started working with his school’s speech pathologist on a regular basis.
The first time he really spoke to me was about a year ago. The message was short, brief and very to-the-point. I had just finished tidying up the living room and had moved to a different part of the house to do some work. When I came back into the living room a few minutes after leaving it, Joel had pulled out all of the shoes I had just put away and was arranging them according to his needs, alternating in some blocks and a couple of measuring spoons I’ve given him to keep. I said, “Joel, I just cleaned this room.” and started moving toward his pile of stuff to put them away when he jumped up, put his hands out and pushed me. As he did so, he very clearly said, “Don’t! Go!” I stood there completely dumbfounded for about a minute mentally rehashing what had just happened and almost pinched myself to see if I was dreaming. He watched me suspiciously to see what I was going to do next. All I could do was kiss him and tell him how much I loved him and good job for using his words. I hate to admit it, but I was almost tempted to recreate the event by trying to interfere with his efforts at arranging, but decided against it on account of us wanting him to know that communicating his needs and desires with us verbally is actually useful. That we will hear him, listen and take his requests seriously.
The next occurence happened earlier this year while he and I were getting ready to leave to take him to school. He was dressed and ready and was waiting on me to gather all of my stuff, his stuff, put the dog in his kennel, turn off the lights and all the million other things that have to be done before you can leave the house for a few hours. Apparently, I wasn’t moving fast enough to meet his needs. He grabbed my hand as I passed by him and the front door, put my hand on the door knob and said, “Joel Go!” Again, very brief and to-the-point. He was letting me know that Joel was ready to go. Of course, I had to rehash the moment over and over again to make sure I wasn’t crazy. That I had REALLY heard him say that.
I am currently a full-time student majoring in Psychology so I know just how we humans can and do perceive the environment around us and how our perceptions can interfere with reality. For starters, we are built to find patterns in everything. We look up into a sky full of clouds and see robots, flowers, kitty cats, unicorns, etc. While you can look at a cloud and ”see” a coffee mug, the person standing next to you might ”see” a shoe instead. When Joel is babbling away, it is very easy, maybe too easy, for our brains to connect a sound with a word. Is he just making the sound “ki-ki” is he actually making the word “kitty?” That is what I might hear, but James might think he is saying something completely different. It is like a sonic Rorshache test. Secondly, memories are constructs of our brains. Over time, our brains can manipulate memories without our even knowing it. Two people who share a moment, may very well remember two very different events. When these rare blurbs of speech happen, I want to remember every single detail of the event ranging from what we were wearing, what room we were in, how his voice sounded as the words passed through his lips, and how it made me feel.
It is important to me to remember all the little details, because I really don’t know if and when another moment like it will occur again. To me, these memories are silver coins I’ve found and gathered. I keep them stored away in a special bag and every now and then, I pull them out, warm them in my hand and look them over. I hear his little voice again and count the words. I put them away and wait for another one.
Last night, I got a new coin. This one was pure gold.
I was in the kitchen preparing to cook dinner and Joel was being his usual busy self trying to climb up the kitchen counter to get to the drinking cups. “Joely, what are you doing?” I asked as I picked him up and held him in my arms. I was wearing my eye glasses instead of my contact lenses because one of them had been irritating my eye earlier in the day. He pulled the glasses off my face and carelessly tossed them to the floor. He was looking at me and I was looking at him and we were having a nice, cuddly moment when he said quite clearly, ”Momma…..Ma ma.” Just like that. It.Was.Perfect. I kissed him and told him how much I loved him. Of course, he was done with all the cuddliness and wanted down. He went back to his regularly-scheduled quirkiness and I floated about the kitchen and made dinner, playing the moment over and over in my head. I drew a picture to commemorate the event. (It’s up to par with my previous drawings, but I never said I was a modern-day DaVinci.)
I know that I have accepted the fact that Joel may never be much of a talker. Hell, he may never talk at all, beyond these few words here and there, scattered about like rare coins. But, man, I want him to talk to us. I’ve not forgotten the parental fantasies from before he was born. It is a big deal that he called me Mama. I know this. But, I want to hear him say I love you. I want him to tell me what he is thinking and feeling. If he is sick or hurt, I want to know where he feels bad. This is not just for me or his dad or the rest of society. This is for him, too. I can’t begin to imagine how frustrating it must be for him to live in a verbal world, unable to verbalize. Our ability to communicate with each other with words and symbols is part of what separates us from the rest of the animals. Is it really so bad for me to want this for him? Does it mean I don’t accept him and everything about him? I don’t think so. It just means I want the very best for him. It just means I’m a parent.