Our daughter, Teghan, was officially diagnosed with Autism at the age of three. I say “officially” because we kind of knew for a long time. Although she was ahead of schedule with all of her milestones, the signs were there from the beginning. Autism affects language and social skills – something babies develop over time. So autism reveals itself slowly over time, as well. But there are moments when you know.
At first, we would wake up in the morning and think something had happened to her. She never woke us up. She has always been a great sleeper, but she was funny about waking up. She would play in her crib, sometimes for hours before we would even know she was awake. She never attempted to call for us or get our attention. She said words at the appropriate age, but never “mama” or “dada.” And not really words with purpose. Eventually she stopped saying them altogether.
She didn’t point. She didn’t show things to us, or show any desire to invite others into her world. She was content to quietly play by herself, all day if we let her. She didn’t seem upset when we left, she didn’t seem excited when we returned. But not always. I mean, she never pointed or shared, EVER. But she was playful. She was always happy. She seemed excited about some things, and in those moments she seemed incredibly normal. That is why everyone said she was fine. That is why we talked ourselves out of it so many times. But we did have to talk ourselves out of it… because there were times when we knew.
By the age of three it was obvious and we got our diagnosis. Teghan started going to a special education school, which seems to have helped her. She loves going to school. She gets picked up by a school bus, and is gone for about four hours a day. We are very fortunate to have this school here. It runs year round, and she has tutors who also work with her one on one from the local university.
It occurred to me recently that we still haven’t told everyone about Teghan’s autism. Not for any other reason than an official announcement seemed awkward. But I have found very mixed reactions from people who find out. There is an extremely wide spectrum, and often people define autism by whatever experience or knowledge they already have. It is never anything like what we experience with Teghan.
Teghan is four years old, and non-verbal. She makes lots of vocal noises. Often she attempts words, with occasional success, but does not always understand how they work to get what she wants. If she wants something, she pulls us to it, or gets it and brings it to us.
She can follow several instructions well, but others confuse her. For example, if asked she will open and close the basement door to let the cats in or out, but she does not understand if you ask her to open a different door. She does not make assumptions of what you mean, and cannot grasp a suggestion. If you show her a few times, she can learn it. She learns everything through practice.
Autism affects language and socializing. She doesn’t understand the concept of answering a question, or any type of back and forth communication. Yet. Social cues and gestures mean nothing. She doesn’t reciprocate smiles, and she is just now learning to look where someone points. She has to be taught all of it, and then memorize it because it will never come natural. I don’t know if we will ever have a conversation with her.
She doesn’t seem to notice others around her. This has gotten much better, but sometimes it is very noticeable. In public she seldom looks at anyone but us. Sometimes not even us. If someone talks to her she will not respond in any way. She doesn’t play like other children. She doesn’t understand pretend play at all. She seems to not even notice other children, but she does. She loves to be around them, she just does not understand the concept of interacting with them.
She taps on everything. She puts everything in her mouth. She gallops back and forth in a systematic loop. She gets stuck in a lot of loops, and is always running. In stores she runs up and down the same aisle tapping everything as fast as she can. She will do this until we remove her, very unwillingly, from the situation.
She loves water. She will go to great lengths to create any water disaster possible, so we block off the kitchen and bathroom. She also loves chaos and taking things apart. She has to be watched closely most of the time.
She has favorite videos that she “asks” for, favorite toys she likes to carry around and tap, and she loves physical play. She is almost always happy, puts herself in time out when she is “naughty,” and appears content to hang around us. She is a good sleeper, calms herself easily, and usually goes with the flow. This could change, and we know how lucky we are right now.
She can find any app on my phone; she especially likes the Bebot, Wheels on the Bus and Spongebob apps. She prefers the task of locating them successfully over and over again to actually playing them, though. She just learned how to use one finger to tap with purpose – this is huge. She is constantly shocking us with the things she knows. It is hard to measure what she understands, since she reveals it only when she wants to. Her disabilities are language and social, so when we get past that barrier she is full of surprises.
We do not know what Teghan’s future will be. There is a good chance she will never talk or be able to take care of herself. And while that is a very hard pill to swallow, the reality is not always what we expect. Do we wish she didn’t have autism? Of course. At least, we wish it didn’t affect her abilities to such a severe extent. But she is fun and amazing to be around, and we love her the way she is, too. The experience has been better than we thought it would be in some ways, harder in others.
One of the hardest parts is how autism is beginning to define us as a family. It is important to me that who we always were does not get lost. Sometimes that happens just by having kids, but the risk is higher when those kids have a disability. Some parents find real purpose for the first time, and through their children find direction and passion. That is wonderful, because they are gaining something more meaningful in their lives.
I love Teghan and will do everything I can for her, but I have interests that I don’t plan on putting in a drawer while I assume my new “autism mommy” identity. Not because it is a bad thing, but because it could never be who I am. It makes an already uncertain future more frightening to me if autism is the center of it all.
Autism is a part of our world, and I spend endless hours online researching it. I want to spend some time, like this, to connect with others who understand or just want to understand. But I also want to share the struggle of finding our way to normalcy in the chaos. To be ourselves, to also pursue non-autism ideas and dreams, to find humor and joy in our situation while still living the lives we want. That is the journey I am committed to.
While autism has brought greater challenges to our life, Teghan has made our life significantly better. I need to build on both the good and the recognizable. And to make sure those things will be the key pieces in creating what we are to become.