Day 24. Year 5.

I'm in a groove right now. Might as well continue sharing. If I keep talking from the heart, maybe it will help clear my mind. I watched Vicki on the monitor most of the night and have the monitor sitting beside me as I type this right now. Usually when Vicki goes to sleep at night she's pretty quiet. I guess I never really know how much she sleeps, because I usually don't watch her and listen to her on the monitor all night. But I've been so worried that I can't look away. And I don't know if it's just recent, but, wow, she sleeps even less than I do. She was actually up really late last night. She yelled for a while. Then she's quiet. Then she yelled, 'I'm so sorry.' Then quiet. Then, the cutest thing... she started reciting ingredients. For hours I hear her. 'Salt, butter, yeast, vanilla, flour, broccoli and cheese.....' That was actually very soothing to me and it made me smile. Gosh what I would give to hear what runs through Vicki's mind as she goes to sleep. This is the closest I've come to hearing that. And it was quite the blessing.


Just in case you were wondering.... yes, she had more SIB (self injurious behavior) yesterday (Monday). That's 3 scary days in a row. I will talk about being homebound in a second, but let me tell you this.... not only has it been a difficult summer for Vicki, but it's been very, very hard for Ally as well. You know what. I need to talk about Ally. I'll write about being homebound another sleepless night. Pretty sure I won't be sleeping much again. Hey, maybe I will actually make it to '30 days' this year.


OK. Back to the difficult summer for Ally. Most summers I try really hard to get Ally out. I put her in camps. Field day fun camp. 'Internships' at the Wacky Bear Factory where she learns how to wait on customers and work the cash register machine (which, by the way, if you know Ally, you know she loves counting money). She does swimming lessons. I try to give her experiences she may not usually get. Why do I keep her in camps? Because if I didn't, what kind of summer would she have? Autism has made me antisocial. At first not by choice, but by necessity. Now I feel more comfortable interacting with people on the computer in the middle of the night instead of over coffee or a girls night out. The logistics to actually do something, plan something. It hinges on so much and instead of trying to plan something and be disappointed, I just don't try anymore. I don't want that to happen to Ally. But I see it starting and it makes me so sad. Sorry, I'm all over the place.


Guess what kind of camps Ally is doing this summer? Nothing. Nothing at all. I used to be able to take Vicki with me when I would drop Ally off at camps. Now, Vicki has always had trouble with transitions... so I would have to make alternate arrangements to sign Ally in sometimes because I couldn't get Vic out of the car, or get her to walk into the place with us. But at least I could drop Ally off and pick her up. I can't do that this year. And it's not like I can give Ally what I perceive as a 'kids' summer vacation'. No trips to the pool this year.(Except for the one time 2 weeks ago a dear friend took Ally and Joe with her family to the pool. It was the kids' only trip to the pool this summer.) No bike rides. No playgrounds. No trips to the library.  And so often, no friends over. It's so hard sometimes. Especially now. Ally doesn't want her friends to be afraid of Vicki's behaviors. What Ally has to see on a daily basis, she doesn't want that for her friends.   It's just not fair to Ally. But you won't hear Ally complain. (Well, yes you will.... but not necessarily about that!)


Gosh, where was I. Sometimes it's hard to see the flow of my thoughts, but I do have a point. Somewhere. ;) Hey, I made a winky face. That's progress. Back to my point. The one thing that Ally continues to do is go to guitar lessons. She will absolutely be the next Taylor Swift. Ally and her white cowgirl boots and guitar and song book. I had the perfect schedule. Ally took guitar lessons and Vicki took adaptive piano lessons. Both at the same time! Both at the same place! You know when you schedule kids activities, that's quite the coup! I was quite proud of myself. It works all school year. But not this summer. Because Vicki can't transition at all into the van. Not even to go to her piano lesson. We keep trying. So many different behavioral techniques. But nothing. And if I don't have an aide working, then Ally doesn't go to guitar either. As a mom, I have so many conflicted feelings. I feel such sorrow and pain for Vicki. And I feel such anger for Ally. It's just not fair. 'Ally get your guitar let's get in the car.' Oh. Never mind Ally, just go practice up in your room. I can't get Vic in the car. We'll try again next week.


I do have behavioral specialists that work with Vic everyday from 4-7 in house. But because of regulations, someone over 18 also has to be in the house. If I don't have an aide for Vic, which I haven't quite often this summer, then it's me. But yesterday, I had the behavioral specialist and an aide. Yippi!  I can take Ally to guitar lessons. I had already discussed with both of the professionals what has been going on with Vic. And the last 2 days her SIB didn't manifest until abut 7:30-8. They were comfortable with me leaving for a half and hour with Ally. I had plans to even stop at the pet store for a second and maybe get a new fish or crab for our fish tank. Just something to cheer Ally and myself up. So Ally and I leave. Woo hoo. We are out. I don't care that it's almost 100 degrees. We are out in the sun and going somewhere together. But, yep, you guessed it...


Not 5 minutes into our trip and I get a call on my cell. Not only does Ally see everything, but she also hears everything. And her mind keeps going. She knew when I got a call that something was going on with Vic. 'Do we need to turn around Mommy and go home now?' 'I understand. It's ok.' Well, I was almost at guitar, so we worked it out that I dropped Ally off and ran home, then Vic's aide drove over to pick Ally up after her lesson. I know it sounds horrible. I am heartbroken over Vic. And at the same time I am angry for Ally. It seems silly, huh? We couldn't even spend 1/2 an hour together and then stop at the pet store as a treat. I just want to stomp my feet and say, 'it's not fair.' But, at least Ally got her guitar lesson in this week. I have so much more to say about Ally. And I have so many less depressing things to share. It's not all bad. It really isn't. It just seems that way sometime. And I just focus on that too much. But I need to wrap this up. I have a bunch of things to do this am... doctors to call/write emails to... laundry to do... blah, blah, blah.


But I will leave you with why I turned around and came straight home yesterday. Yes, Vicki had some SIB right after I left the house. She was working upstairs in her room with her behavioral specialist. Doing 'work' is one of the only things that Vicki enjoys right now. She is the hardest worker I have ever seen. She loves learning. She is amazing. Anyway, they were doing some discrete trials. And then all of a sudden Vic stopped. She said, 'stop please. wait a minute.' (That's been one of her stem phrases lately). But as soon as she said that she started screaming. It must have been that awful scream I described yesterday. Because right after that Vic started hitting herself in the head with her hand. And when the therapist went to block her, Vic pushed her really hard. And then Vic stood up and started throwing things off of a shelf in her room. I had just, within the last year, started putting 'knick-knacks' and stuff in her room to try to make it more of a 'typical'  teenage girl's room. Not so sterile. And she grabbed one of her birthday presents from this year off the shelf, an adorable little ceramic trinket box that said, 'There's no place like home' on it with a pair of red shoes (Vic's favorite color is red) from a very special friend. And Vic threw it across her floor. It shattered. And yes, that made me cry. Vic settled down just as quickly as it started and it was back to work for her. And just for completeness sake, sometimes I look back on these posts so I can remember... it's kind of a medical journal for me.... Vicki did have more SIB at around 8 pm again last night. It wasn't as severe. But it was there. And I am so afraid for her. Please continue to pray for Vicki. And if you could throw one in there for little  Miss Ally, I would appreciate that as well. I will try to do a happy post tonight. I really will. And then I'll get back to our summer of sadness. Sheesh. What a downer I am. I'm sorry. This truly helps me though. Writing about everything. Thank you all for being my personal therapists. Thank you for being here for me. I am blessed. xo