We are not big video-making people. We haven't consistently documented any of our kids' lives, but we've done a few video taping sessions here and there.
We did a fair amount the year Janey was two. Or I remember us doing a fair amount, and I've seen them around. But I don't watch them. I watched a bit of one, once. I started to scream, watching it, and begged Tony to turn it off, which he did. It was Janey, pre-regression. She was talking. Talking as well as any two year old talks, better than some. There were slight oddities to her talking, but it was talking, fluid talking. Her eyes were engaged, she was lively and cheerful. She was pretending to be the singer in a band the boys were making, and if I can recall, she said something like "This is Janey and the Amazing Band!" Not echolalia. Regular, creative talking.
This morning, Tony was looking at an old private group he'd created on Facebook, one to keep track of Janey's health issues. At one point, he'd uploaded some videos of Janey onto it. They weren't dated, but I would guess she was 6 or 7 in the video I watched this morning.
What I knew, from reading old blog posts and from what I can remember, is that after her big regression at age 3, Janey's talking at one point recovered slightly. It was in no way up to age level, and I think I'd convinced myself it was about like it is now. The video showed me I was wrong about that.
The video starts with Tony filming our cats (we had more then---four of them). Then Janey walks in the room. She is carrying a frozen pizza. She says "Want some pizza? Open it! I want pizza!" She sets down the pizza and repeats that, and uses sign language a bit, or her own version, pointing to herself and then opening her hands to show "open" I say "But what is the magic word if you want something?" She repeats "pizza!" and then I start it for her---"Ple....." and she says "Please!" Then, I say "Okay, I'll make pizza, but first, can you say your name for the video?" She says something I can't understand at first, but then says "I want a banana milkshake!" I sometimes call her Banana Pancakes or Banana Milkshake as a nickname---no idea why, but I still do.
It isn't just the talking in this video that's far more fluid and easy to elicit than it is now, it's her whole demeanor. She is more relaxed, more engaged, more lively than I've seen her in the last 3 or 4 years. She is, to put it plainly and in terms that I hope don't offend anyone, closer to typical, closer to what we call normal.
I fool myself a lot, or pick what I want to think about, or to be easier on myself, simply don't think about things a lot. I know in my heart Janey's talking is decreasing over the years. She talks less now than a year ago, much less than maybe 5 years ago.
She is not losing ground in other areas. She understand more all the time, from what she can show us. She is able to do more for herself. She is calmer, mostly (although we had a rough weekend at points, and if I am again brutally honest with myself, we have a lot of rough weekends) But she is more affected outwardly by her autism than she used to be---I have to admit that. And it's okay. It's truly okay.
The latest thing that parents who blog about autism often seem to be called is "martyr parents". That hurts. I don't ever, ever, ever want to seem like a martyr. And I don't feel like one, I don't think I am one, even if I dig into the depths of my soul. It is my great privilege to be Janey's mother. I love her more than I can possibly state. But that love includes wanting her to be able to express herself, to be engaged in life, to be open and able to enjoy what life has to offer. I can't see her decreased talking, and more than that, her decreased engagement in others, as a positive.
Should I make myself watch old videos, to force myself to see what I don't want to see? What good does it do? I don't think that anything I can do, or the schools can do, changes Janey much. Or that is wrong---what we CAN change at times, and I think we have, is how accepted she feels, how much of her time is spend screaming or crying or otherwise unhappy. That is less than it was in the past, for the most part. But despite many, many years of speech therapy and ABA therapy and excellent teachers and aides and therapists and a family that does whatever we can to help her communicate---as the years go by, Janey talks less and less. There are moments that stand out, great things she says, but I would say this weekend she said a total of about 5 different phrases. There was "want to go for a car ride?", "want to snuggle on Mama's bed?" "want a TV show?", "want a shower?" and "want shoes on?" She did not answer any questions. She did not label anything, or comment on anything, or say anything we haven't already heard many times. This weekend was pretty typical.
I hate old videos. I hate feeling like somewhere along the way, not just once but at least twice and probably more times, Janey lost ground she had gained. I think I'll wait another decade or so before watching old videos again.
Monday, February 11, 2019
Friday, February 1, 2019
For the last year or so, every now and then, about once a month, Janey does a very odd thing with her eyes. Basically, she rolls them up so high you can only see the whites of them. This seems to happen more often at night and outside, when she's a bit tired. It's a very alarming and scary looking thing, but most of the time, she seems fairly unbothered by it. Once in a while, she does get upset. One time it happened in the daytime, and she was trying to walk around, but couldn't seem to see as her eyes were turned up. I sat her down and covered her eyes for a bit until she got control of them back. We have tried to catch this eye thing on video, but haven't managed to so far, partly because it's often dark when it happens.
Janey had her IEP meeting on Tuesday, another very nice meeting, her last one in junior high. She will be at a new school next year, high school someplace, and it's hard to say goodbye to the great team she has where she is. I almost forgot in the midst of the meeting to ask if anyone at school had seen the eye behavior, but did finally remember. Her classroom teacher (one of my favorite people ever, by the way) had seen it a few times.
Later that day, I got a call from the school. Janey's leg was jerking back and forth, and she didn't seem to be able to stop for a while. It had happened twice that day. I spoke to her teacher and also the school nurse, and both said they didn't think it was a seizure (which of course is our biggest worry). She recovered from the jerking and was cheerful and wide awake. Everything I've learned about seizures has said that after one, just about universally, the child is very, very tired and goes to sleep. This hasn't happened with Janey, with the eye thing or with the leg jerking. However, by chance, Janey's annual physical was the next day, so we agreed with the nurse to bring it up.
At Janey's physical, we explained about the eye events and leg jerking. Her terrific pediatrician asked us some questions, and agreed it didn't really sound like seizures, but did feel she should see a neurologist. She gave us a referral and said we should see one within a month. As often happens, when I made the call at home, there were no appointments available until about 2 months, at the start of April. I put in a call to see if this was okay, and haven't heard, so we will go with the April appointment for now.
When I was talking to the pediatrician, I brought up something from very, very long ago, when Janey was about 19 months old. She wasn't walking then. She was just barely sitting up, so obviously her physical development was very, very delayed. We were referred to a neurologist then, and saw one, not at a hospital but at our health plan's office. It's hard to remember the details of that visit, but she ordered an MRI, which we got. And then I didn't hear, and didn't hear, and finally called over and over and FINALLY got a call from the neurologist.
I remember getting that call fairly vividly, although I think I've tried not to think about it over the years. The house was very noisy when it came in, with 3 kids doing their various things, so I went outside to hopefully be able to hear better. We live near trains, so of course a train was going by. And the neurologist had a very, very heavy Russian accent. I could barely understand her under the best of conditions. But from what I could hear, she said that the MRI wasn't normal. She said something about there being gray matter where white matter was supposed to be, or vice versa.
It's hard to understand why it seems like there was never any followup on the finding. I honestly can't even remember talking to Janey's pediatrician about it. Her old pediatrician was, well, not great for Janey. He had been very good for the boys, but by that time, he had risen in the ranks of the health plan and seemed to have little time. He also just seemed to be overwhelmed by Janey's various needs. I think what happened was Janey's physical development rapidly got better at that point, and as she headed into the year that she was two, her best year, we all kind of put the strange finding behind us. Two was her golden year. She walked, she talked a lot, she was even discharged from Early Intervention. She was going to be fine. And then, of course, around age three, the horrible regression happened.
But I did recall looking up what it meant to have gray matter in the wrong place, or white matter. I found it was a condition called Gray Matter Heterotopia. There wasn't much info then, and I think I didn't dig too hard. However, I remembered something that had said that with girls with this disorder, often they start having seizures in their 2nd decade. That seemed very far away. Now, of course, we are in Janey's 2nd decade. So I mentioned the long ago MRI to Janey's current pediatrician. She looked up the long ago report, and read me a bit from it.
The report said there was a good deal of gray matter where white matter should be, but not enough to make a definite diagnosis. It also said there were changes to the frontal lobe, nonspecific changes.
Looking up Gray Matter Heterotopia now, there is still not a huge amount of information available. Here's a Wikipedia article. LINK It's hard to read, emotionally, what is out there.
Janey has had another MRI since that first one, when she was 11, but that one was specifically looking for a possible tumor connected to an abnormal blood reading. What I've read said that unless the MRI is specifically looking for the gray matter problem, it might not be noticed.
So---something I had put out of my mind long ago is now, of course, back in my mind. One of the two medications Janey takes is an anti-seizure medication, prescribed in her case for help with bi-polar type symptoms. But it could also be serving to mask seizures, her pediatrician mentioned. Is Janey having seizures? Is this the next thing? I know seizures are fairly common in autism. How does the gray matter issue figure in, if at all? Is there something we should have been doing specifically for all these years that we weren't or aren't? What is going on?
Amid a season of many worries, this one is hitting me fairly hard, I must admit. Hopefully, we will get some answers soon, and we'll do the best we can with whatever we find out. That's what we've been doing, and that is what we will keep on doing. It's what all of us living this life do.