Day 23. Year 2.

     Joey has a class in school where the first thing they do when they come into class in the morning is an exercise called 'Dump your brain'. It's where they brainstorm everything that they've been learning about a subject and throw it all down on paper. So for today's post, I am going to try this exercise. I am going to dump my brain. It sounds kind of freeing, doesn't it?

     Here it goes... at the end of yesterday's post I mentioned that I've had a lot of things on my mind about Vicki. What better way to try to process everything than to dump my brain, it's all kind of jumbled up there anyway. First of all, you know how when you see something day in and day out it looks different to you than it does to someone who hasn't been around the situation consistently? Like when a grandparent sees their grandchild after a few months hiatus. 'My how you have grown!' 'You seem so much older and more mature.' 'Oh what big eyes you have!' 'What big ears you have!' 'What a big mouth you have!' Oh wait, that's little red riding hood to her grandmother, the wolf in disguise. :)  But anyway... I notice that with myself. I see Vicki day in and day out, and sadly, so often, I focus on her deficits, her areas of need, day in and day out. And I get frustrated. Because things cycle. They always have. I'm sure they always will. Something new crops up, a behavior of some sort, a problem that needs resolving, a puzzle that needs solving. And I spend countless hours and days and even months trying to come up with a plan. Sometimes the plan works. Sometimes it doesn't. Sometimes Vicki resolves the issue herself. Sometimes it disappears as fast as it appears. Sometimes I feel like all I do is talk and talk and talk. And nothing ever gets resolved. I see things crop up that we've dealt with countless times before. A new behavior that takes a little different shape than we saw a few years before.

     Before I get into some of the issues that have been concerning to me, I thought I would try to take a step back and really take a look at the changes that Vicki has been through and all of the amazing progress she has made. I've always said that it's the little things. What I tend to forget sometimes is how all of the little things make big things, leaps and bounds. When I think back to last year at this time, and if I were to read my blog from last year, the blog has a different vibe, a different theme. I wonder how many posts last year revolved around potty issues? Quite a few I think. And I look at my blog this year, how many posts have revolved around potty issues? None that I can recall. Holy moly... that's incredible! Last year I was up late every night, spending countless hours in Vicki's room with carpet cleaner and Lysol, crying over her as I had to give her a bath and washed her up. How many times have I been up late this month? Well, that's a bad question... but I have been up for different reasons! :)  That, in itself, is amazing progress. Yes, we still have an occasional accident. And yes, I have had to clean up her room. And, do I think that behavior is completely out of our lives forever? No. BUT I need to celebrate Vicki's successes! And I do, I really do. The physical and emotional changes that Vicki has gone through this past year have been tremendous. And she has embraced these changes with more poise and grace than I could have ever done. And I have to always remember that, and I do.

     I know that Vicki cycles. I know that Vicki is growing and changing. And with all of the change comes tremendous emotional turmoil. For every girl who is going through puberty. I understand that hormones are crazy. And now that I am thinking of hormones, it reminds me of a cheer that we used to do back in the day... 'When you're up, you're up. When you're down, you're down. When you're messing with the best, you're upside down.' :) Truer words were never spoken.

     But you know that gut feeling that you have? That mommy sense? That feeling that something is just not quite right? Well, I have it now. And I was validated, because my husband has it too. And we are the ones that have seen everything with Vicki. All of it. And if both of us think there is something wrong, we are going to check it out. Best case (or worse case) scenario, depending on how you look at it, nothing will come of it. There will be no explanation for some of the things that we are seeing with Vicki. If that's the case, then I guess we will chalk it up to hormones, development, cycling. BUT, if there is something we can do for Vicki, if there is something we can try that could help her, by golly we will do it. And at least we can say that we followed our instinct and our instinct was wrong. The overwhelming theme I think of this year's blog is struggling. Struggling with behaviors. And when we look at things that have been going on, we can't help but feel we are missing something. So, I started with the emails and the telephone calls.... unfortunately, I think it's time to revisit some biomedical interventions. And medical interventions period. I always worry more in the spring. For the past two years the March, April, May timeframe has been the season for neurological happenings. Two years ago in May is when Vicki got sick and first started having seizures and spent almost a week in the hospital. Then last year in March she was back in the ER with more seizures. She is on a daily anti-seizure medicine, but I always get more nervous around this time. And every once in a while, I get nervous... looking at things from a neurological standpoint. We used to do a lot of biomedical stuff. And we kind of got away from it... stepped back from it. It's so hard to say whether any of the supplements or interventions we have tried over the years have really helped. Was it really the supplement? Or was it just Vicki, developmentally moving on naturally? And I'm not going to lie, the supplements and the shots and the chelation we used to do with her were expensive. And nothing was covered by insurance at all. That is NOT the reason we stopped some things, but again, sometimes you have to step back and say is it really making a difference? And now, we are at the point I think, that we want to revisit some things. Take a look at some labs (and NO I am not looking forward to putting Vicki through doctor visits and blood work and everything else...) But, what if there is something off? What if there is an 'easy fix' to a few things? Not that we aren't ready and willing to ride out behaviors and support Vicki in every way we can. But some of the things we've been seeing, it's all been so strange. And if we have to chalk it up to mood swings and emotions then we will. But, something is nagging at us.

     The other night at bedtime my husband and I were in with Vicki saying goodnight. And I've said before how she likes to go through her visual schedule and recall her day for us. I love that part of the day with Vicki! But things were so odd. We couldn't put our finger on it. But we both felt it. It took her at least 40 minutes to go through her day. And Vicki clearly wanted us in there with her, and she clearly wanted to tell us about her day. But it was something in her face, she was struggling. She has been amazing at recall, she shows me everyday that her memory is phenomenal. And we have barely scratched the surface of what she is capable of and has inside of her. But while she was recalling her day, she was getting stuck. Things she knows she was searching for. Her actions, both physical and speech production wise, have been off lately. Like she is in slow motion. And her words were all drawn out, 'I waaaannnnnt it, yeahhhhhh.... I wannnnnttttt itttttt......' And then nothing. She couldn't get it. She couldn't find it. She clearly wanted it. She would stop and make a sound that kind of sounded like a horse... when you put your lips together and blow out air.... She kept stopping and doing that. Like she just didn't have it. And we felt so helpless. And then she would get stuck, start stimming and repeating a word or phrase. Over and over and over and over. And then when we would try to get her to move on, she just couldn't. It was like she was stuck there, in that repetitive sequence. And her echololia has been so crazy lately. She's always echoed. And sometimes it's beneficial for skill acquisition. And sometimes it gets in the way. But it's always been there, some times more frequent than others. But it's different now. Just different. More intensity. The vocal production is more intense and more random. Before she would repeat the last thing you would say to her. Or repeat a question you would ask of her before she answered yes or no. Now it's like she is picking the most random things to repeat. And it's not even from when we are talking to her. I could be saying something to one of her aides and she overhears it and yells it. And it doesn't make any sense to me. And like I said the intensity of her echoic vocalizations is odd. The best way I can describe it.... it's almost like Tourettes... but it's not. It's like the yelling comes from nowhere. And it's loud. And she's been stimming on so much lately. And she's been yelling out more. And she's been crying. And she's been tantrumming. And she's been dropping. And we are struggling with things that she loves, like walks, and animals, and horseback riding. And sometimes she's just so vacant. Like she's there, but she's not in there at all. And even her gait... it's off. She's stopping and starting and stopping and backing up and seems to need physical touch to get going. After my husband and I came down from her room the other night, we were talking about stuff.... And we both felt it. The best way I can describe some of what we were feeling... it's almost like a TIA, or a mini stroke, only not at all. But something is blocking her. Something is going on.  Maybe we are over thinking things. Maybe it is all just emotional and hormonal and testing her boundaries. And maybe it's not. But things are so off, so out of whack, we just want to help her. And it's not just us that sees these things, it's global, across the boards. Her teachers, her horseback riding instructor, her therapists. I can't even describe all of the odd things that happened yesterday after school. Things that just don't make sense. She couldn't read the books she normally reads. She just sat there. Is she just being stubborn? Defiant? A teen? Maybe, but it doesn't feel like that. She fell apart when she went to the bathroom and wouldn't move, or get up off the floor. She had trouble sitting down to the table at dinner and trouble the whole way through dinner. I just don't know.

     Maybe she just doesn't know how to handle her feelings, which is totally understandable. I don't know how to handle mine. And I can describe what I am feeling, well, kind of. That's what really, really sucks. I want to help her so bad, I want to ask her so much. I want her to tell me. I just want her to tell me. I want to jump inside of her brain and untangle the kinks. I want to hold her and tell her that it's all ok. And I do.

     So, that was my brain dump. Sorry you had to be privy to it. But thank you for listening. xoxo