I have been trying to figure out a way to explain what has been happening for over a month.
I just cannot explain it. If I try to write about it all, I would not write. I did try, but the unpublished post was endless, and I'm not even sure it was accurate. That's why I have not been able to post for so many weeks. It's too much, it's too overwhelming and confusing. Only a few select people know exactly what has been happening in the last month with Lilli. We have not completely solved any mysteries yet. All I can do is keep telling myself that this is just one more part of Lilli's story. And it is not the end of the story. We just have to give it time, to wait and see how things turn out.
Last week I checked out the copy of the book "Carly's Voice; Breaking Through Autism." This is the very same Carly that I saw typing in a YouTube clip last May, and it inspired me to try to teach Lilli to type. Oh Carly, you have no idea how much influence you have on this one mom. The book is absolutely amazing to me, because it is telling me part of our story. It begins when Carly was born and chronicles her childhood up through the point where she begins to type, to what she is doing now. The similarities between Carly and Lilli astound me, and the things Carly does and says through her typing reveal things to me about Lilli.
I have been so moved and inspired that tears have welled up during several parts.
"Carly's Voice" is written mostly by Carly's dad, Arthur Fleischmann. In the first few pages, I honestly thought I might not enjoy reading about someone else's life raising a child with autism. It hits too close to home. All the description about being up for hours every night with a child who does not sleep through the night. The toilet training that drags on for years until past age ten. The spoken words that would appear and disappear after several months. The difficulties in trying to maintain or even have at all a normal social life, marriage, family time. Fighting to get services for a child who desperately needs them. The list is really endless. And I identified with all of it. I don't even feel like writing about it. Because I live it. I pressed on through the painfully familiar first few chapters as he described the endless trips to specialists, reams of paperwork and constant stress and sleep deprivation. I kept anticipating the part where Carly begins to type. When I finally reached that part, I was overwhelmed with emotion. How unbelievably similar our experiences have been, even with communication and typing.
This is where I explain that though Lilli's typing has sent me soaring on hope, it is also filled with mysteries. Part of my deep discouragement this past month was about Lilli's typing. I have been depressed about it. There is a lot more to the story than I can go into. I kept wondering where I went wrong, what happened. Lilli's typing changed, and slowed to a crawl. I read about Carly's beginning and cried because it gives me hope. We have hit a rough patch, but we will get through it. Lilli is still typing with her teacher and therapist. With me, her typing is sporadic and ranges from wonderful to maddening. With Jasen, it's been sparse and difficult. I mourn because I feel like I have lost that feeling of freedom to know what Lilli wants to tell me, anytime and all the time. I had a dreamy few weeks where Lilli and I sat and typed for long stretches of time. I felt more connected to her than I ever felt. When she looked in my eyes, we exchanged knowing looks and I really knew for the first time ever that she knew I knew what she was thinking. There are no words to describe how precious that was to me, after eight years of not knowing.
But then something happened. The typing slowed to almost a stop. Some days I do not type with her at all. We have had many days when I have no idea what she is thinking whatsoever. On those days I am deeply depressed because I feel like the door to our communication and relationship as mommy and daughter has been slammed shut, and the figurative silence is deafening.
I have been reading "Carly's Voice" with hunger for answers. And I feel so much better reading about someone else's rocky, mysterious experience with teaching a child with autism to type. I learned that Carly did not even type at all with her parents at first. Only her therapists. She was eleven when she began to type on her own. Lilli is only eight. Oddly, that comforts me. Almost like, we have time. We don't have to rush this. She will type on her own. Like Lilli, Carly would not type when they tried to videotape her doing it. There was a long period of time when her parents did not see Carly type and had to just believe the therapists and what they said was happening. They later learned that Carly had OCD, and would only type when the circumstances were "just right." This sounds familiar.
There are some things that Lilli has in common with Carly that are shocking confirmations to what we've been wondering about. Carly explains how she can read an entire page of text with one quick glance. She can hear soft conversations from several rooms away, even while she is making noises and watching tv. It sounds like science fiction. But when I read it, I laughed with odd relief. Lilli has these abilities too. One big difference between Carly and Lilli's stories is that Carly never stopped moving and tore the house apart. Lilli is not like that. She gets into things and makes messes, but she sits and plays with Elmo or her ipad. She still has her meltdowns, though. But it seems that Lilli's meltdowns are different than Carly's. Every kid with autism is unique. The saying in the autism circles is "If you've seen one child with autism, you've seen one child with autism." Because they are all different, which is why we have the term "autism spectrum."
I have not even finished the book yet, and already it has renewed my hope. Lilli's story will be Lilli's alone, and I know she will not be exactly like Carly, or any other kid. But it was the encouragement I needed, to know that we are doing the right thing and we just need to keep on trudging up this mountain. I have said before this is a long road, with little direction. I feel like we are making this up as we go along. The light at the end of the tunnel may be very far away, but at least it is there. Whenever I can't see the light at the end of the tunnel, I have to remind myself that we went into this with blind faith to begin with. Last year when we started to teach Lilli to type the word "go," we never dreamed that Lilli would make such incredible progress in one year's time.
It helps me get inspired for the journey ahead when I look back to see how far we have already come.
Links about Carly: