When you are raising a child on the autistic spectrum, or any child for that matter, it is often some small inconsequential thing that can spurn your thoughts into frantic worry for your child. Watching a child struggling with illness on television can make a parent lose sleep fearing that the same will happen to their child. Watching children happily playing a game together while your child sits on the floor lost in their own world can do that too. That's the thing about senses, a sight, a smell, a touch, a taste can bring your mind somewhere it never intended to go, for good or for bad. Sometimes it is subtle, and sometimes, it hits you like a brick in the face.
Today it is the brick in the face moment I want to talk about.
It happened last night while brushing Maya's hair. We often, before bedtime, sit on my bed and watch something on TV together while I brush her hair. Maya's hair is curly but thin so it gets tangled very easily. It is easier (and sanity saving for me) if we brush her hair very good in the evening before she goes to bed, so in the morning when there is more time pressure and Maya is infinitely more cranky (at what age can I give her coffee??), I can do a quick comb and not have to struggle with a lot of knots and quickly put her hair into a ponytail and off she goes. Plus, it is the loveliest of mother-daughter time and without a doubt, the best part of my day. We are sitting close, lots of hugs and kisses are exchanged and for a brief moment every day, my 7 year old who is growing like a weed is again my little baby and her head just fits perfectly under my neck. Often, it is during hair brushing that I can really talk to her about something because it is quiet and still enough for her to be able to focus a bit more. So when I really want to talk to her about something, I often wait and do it during hairbrush time as the chances are much greater at having a fluid conversation.
Last night though, Maya had a particularly whiny evening of bugging the crap out of her father to play with her Thomas Trains. We have been trying to focus Maya on accountability lately, so we have been putting in place a routine that she and Papa can only play with Thomas Trains after she has her pajamas on, hands and face are washed and teeth are brushed. Leo sometimes has a hard time getting her to listen to him. Most nights, he is very patient and caring and somehow gets her to do her part in the deal, but sometimes, particularly when he is not quite in the mood to play trains, he gets deterred from the end game (said pajama-ing and teeth brushing, etc.) to the point where he either just gives into her whining or just gets angry at her. When I see that he doesn't have a lot of patience, I try to help him out by dealing with Maya's pajamas and evening clean up so that all he has to do is play. Well last night, I went upstairs and asked her to come with me and we walked into her room and it was a D-I-S-A-S-T-E-R. Toys, markers, books every which way, everywhere in her room and I was so not in the mood to deal with it or clean it up. So, I told Maya no Thomas Trains unless she cleaned up her room. She didn't fuss, but I could see on her face she wasn't thrilled and I told her to see how far she could get while the clock was yellow (we have a color clock which helps Maya to tell time). She kind of half heartedly started cleaning up, but was more distracted with each thing she picked up, she started playing with toys, opening books, etc. Finally after about a year (well, probably 15 minutes in real time) I told her that if she didn't start cleaning up, no Thomas Trains. She threw herself down on her bed and started wailing and I quickly left the room (to save my sanity). Her crying brought Leo upstairs to ask me what was happening and I told him. He then tried to coax Maya from her state (no, please don't anger IT) by helping her to clean up, which turned into daddy cleaning up Maya's room. I walked in, Leo was cleaning and Maya was laying on her bed, with the most satisfied smile on her face. I reminded her, that there would be no Thomas Trains this evening because she didn't listen. More throwing herself, wailing, crying. Leo quietly finished and left the room and after a few minutes Maya came in, head down, hair in front of her face saying "I want Daddy". Daddy came over and she walked over to me and told me she was sorry for not listening and for not cleaning her room and put her arms out for me to hug her. I hugged her and of course she said "can I play Thomas Trains now?" and I told her no, that it was good that she was sorry but that since she didn't listen, there would be no Thomas Trains tonight. She stuck her lip out, put her head down and shuffled away and came back with the hairbrush. Feeling good for sticking to my guns I signaled for her to hop on the bed and we turned on the TV and nestled into our little nightly routine. Leo skulked off victorious since he didn't have to play with those bloody trains.
OK, that went on longer than I intended. This post is really about what happened during the hairbrushing and not what happened before. Sorry about that.
So, we're brushing hair and watching a children's story hour on TV, where kids about Maya's age are sitting in a circle taking turns reading a book, on a third of the screen were the kids reading, on the rest the illustrations and the words from the book. Maya asked me at the beginning, how old are those kids? I said I thought they were maybe about 6 or 7 but not older than her. I brushed, we hugged, all was right in the world. After a few minutes, Maya asked, "What are those kids doing?" I told her that those kids were reading. She didn't say much for a few minutes, just kept watching. Then she said, "I can't read and I am 7, some of those kids are only 6 and they are reading." I was stunned into silence, at once terrified and unsure of where she was going with this. I asked her if she knew what reading was. She answered, "putting letters together." And I explained to her that letters are put together and form words and words form stories and then you can read the stories. I then took a brave step and asked her if she would like to learn how to read. She said, "yes, I would like to, but I am already 7 and those kids are 6." I felt tears well up in my eyes. I said to her, that even though she was 7 she could still learn how to read, that there are many kids who learn at age 7 or even older. She then told me that some kids called her dumb for not being able to read. I asked her if that happened in school and she said no, it happened at a birthday party that we had attended in November. At the party some kids were reading stories together and Maya was sitting there and they gave her the book and she didn't do anything. One of the boys asked her if she knew how to read and she shook her head no. This boy then called her dumb. I really had to stop myself from breaking down in tears right then in front of her. I took a sip of diet coke just to hide my face a little from hers and to get my voice back on an even keel. I know children can be cruel and that is just part of life and I accept that my child, like any other child will have to put up with ridicule. But what was so striking for me is that Maya has obviously been carrying that with her all this time. Often I feel like Maya's autism is like a raincoat, that often her social, cognitive and other delays don't register to her, because she is off in her own little happy world of her own making and not reacting to things in ways other kids do. But things do get in, more gets in than I realize. How do I deal with that especially when it is hard for her to express it?
I told Maya then that people, including kids sometimes say silly things and that part of life is learning how to listen but also knowing when not to listen and that people who are not nice to other people are the ones who are dumb, not the people they are calling dumb. I asked her then if she understood, she shook her head but I could see in her eyes she didn't fully comprehend what I was saying. At 45 years of age I am only just starting to understand it myself, so what can I expect from her?
I did want to get back to the subject of her reading because up until now she has been afraid of reading, she won't even go over the letters of the alphabet with us, not with her flashcards, not with songs, not with books, not with puzzles and not with games, even though I can see by the worksheets from school that she does know her letters. I also, of course wanted to take away whatever it was inside of her that was carrying around what the kid said to her at the birthday party, I wanted to just take out a big pair of scissors and shred it to pieces and throw it away. If only I could do that for her.
I tried to reassure her as best I could, who knows if it really gets in or not though. I said that if she wanted to read, she could learn and that in school she would learn how to read. That it might take a bit longer but that if she wanted to do it, she could. And I hugged her really tight and kissed her face all over the way she likes me to, because really what else could I do?
And when the lump cleared out of my throat and I thought could talk again without having tears in my voice, I said something to her, I reminded her of something she told me a few months ago and then a few days ago, when I again marveled at the way Maya puts together a puzzle. Unlike me, my parents and just about anyone else I know, Maya does not take all the puzzle pieces out of the box, turns them over and looks for the edges. Maya looks at the picture on the box and starts digging through pieces, it can sometimes take a few minutes or sometimes longer, but she eventually finds some pieces that fit together, always in the middle of the puzzle. She then looks for more pieces, digging through the box until she finds them. There is some trial and error, but very little. 7 times out of 10 she picks the piece that will fit. I ask her how she does that, I tell her that I need to have all the pieces out and then look for pieces that fit together, and most of the time, the pieces I pick don't fit. I asked her how come the pieces she picks fit a lot of the time. Her answer a few months ago, was the same as her answer a few days ago, "Mommy, some people are good at puzzles and some people are good at other things, I am good at puzzles."
So in my quest to try and make my daughter and myself feel better, I said to her, "Maya you know how you really good at puzzles and some people are really good at other things? Some kids are as good at reading as you are in puzzles. They can read a book real easy, but if they go to do a puzzle it will take them a very long time. But just because they are not as good as you, doesn't mean that they can't finish a puzzle, maybe they have to learn how a little more. And just because some 7 year old kids can read, and you can't read yet, doesn't mean that you won't be able to read someday. You will."
With that, she bounced off my lap, kissed me goodnight and headed off to bed.
Her hair was a knotted mess this morning.