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

Day 23. Year 5.

So here it goes. One of the most emotional, raw posts I have ever made. Things are going on with Vicki that I can't even begin to describe in depth. And I'm not sure why I am even trying. I just need to. For me. So please bear with me as I bare my soul.


You know, it's one of those things.... each person's situation is so different, and so unique. Each person's struggles are their own. It doesn't matter how big or small, how silly or insignificant, or how traumatic and life changing you may think a struggle is. It's real for that person. I'm not quite sure why I'm babbling about this. I think it's because I don't want to sound like I am taking for granted how blessed I truly am. And I don't want to make my struggles sound like they trump your struggles. Because they don't. They are just different. With that being said... here's my description of Vicki's SIB (self-injurious behavior).


It started back on June 2. It lasted about an hour. It was awful. Awful isn't a strong enough word. It was like it came out of the blue. My husband and I didn't even register what was happening for a second.


You know how, as a parent, you can distinguish different cries from your baby. Different screams. Different sounds. You know exactly what they want/need when you hear that specific sound. It's the same with Vicki. She has a lot of different screams and cries. She has been screaming a lot more in the last few months. Most of the time it's in response to something I ask her to do/not do. But this scream... this scream is so different. It chills me to the bone. It scares me. It's multidimensional.  I wish I could describe it better. Yes, it's loud. But it's more than that. It's like it's coupled with such an intense fear. And I can see it in her eyes. It's wild. It's primal. It's got fear and anger and sadness and confusion and rage all in one sound.


Ok. So, I've established that she is screaming through this ordeal. 


She was in the living room the first time it happened, sitting on our toy box footstool and the kids and my husband were in there watching tv with her and I was cleaning up the kitchen from dinner. Vicki started screaming and reached  up and hit herself in the head with her hand. It was so quick that it didn't even register at first. I think Joe said something to her, asking her what was wrong. Then she hit herself again with an increased force and both Joe and my husband lunged toward her. It kept going. Vicki is so strong. My husband kept talking to her trying to soothe her. And he was holding her arms down so she couldn't hit herself. Vicki's arms and legs were flailing so violently and she was screaming and shaking her head back and forth.  I grabbed Ally from the living room and Joe took her up to his room. I stayed with them for a few seconds to make sure they were ok, for the moment. I was shaken up. Joe and Ally were shaken up. Ally and I were crying a little bit. Joe was so worried. What's wrong with Vicki? Is she going to be ok? All I could do was reassure them that Daddy was taking care of her and we would help her through it. Thank God for Joe. He kept Ally in his room for about an hour. Just playing with her and keeping her mind off of the noise and the chaos downstairs.


Now my husband is a very strong guy. Former football player, former wrestler. He knows how to move and how to pin someone down.  And he called upon all of his knowledge and strength to get Vicki through that hour. There was nothing really that I could do, except pray and check on Joe and Ally from time to time. I felt so useless. And when I would look into my husband's eyes, I saw such pain and anguish. Not something I ever wanted to see reflect in my husband's blue eyes.


Now to try to describe this SIB better. I know I don't have to. But for some reason, I need to. I'm not really sure what writing it down accomplishes. My husband was able to move Vicki from the footstool to the floor and I moved everything away from her. She kept up that heartbreaking scream. It was so guttural. And she was mad. Or I don't really know what she was. But I know that she wanted her hands free to continue hitting herself. It was like she had this need. And when she couldn't move her arms to hit herself, she tried her legs, she tried to knee herself in her head. She tried to kick. She would lunge her head toward her arms and try to bite herself. Yeah, that's about it. This vicious cycle happened for at least an hour. And every time my husband tried to loosen his grip, she kept trying to hit/bite herself. He was basically straddling her trying to keep her safe and keep her from harming herself.


It was so terrifying. We kept talking to her to try to soothe her. And when we thought she was finally settling down she would ramp up again. Giving her the freedom to move her limbs was so hard. When she was finally able to stand up, it was so hard. When we took her to bed, it was so hard. And a few times throughout that process she ramped up again. It happened again in her bedroom right before bed. She hit her own head so hard with her hand. Every once in a while she would connect. And that was that. We watched her on her monitor all night long. We comforted Joe and Ally. I cried. And the next day, you would never know it happened. I kept waiting, watching, praying.


Now, we've contacted all of our doctors about this terrifying behavior. I wish someone had some answers. Do I think it could be medicine related? Yes, absolutely I do. We are looking into everything we can think of. You want to know what is horrible? I don't like medication. Never have. Don't like to use it. It's been hard for me to try pharmaceutical management for Vicki. How do you know what helps? What makes things worse? If this is a side effect of an anxiety medication, it makes me feel horrible. What if trying to help her with one thing has made something else wrong? What does Vic feel? Oh God, what I would give to know.


Fast forward to Saturday night, July 18. We were sitting down at dinner. Vic started crying a bit. Off and on. That's not unusual. It's heartbreaking, but not unusual. But then we started hearing those screams. It was the same scream. We just knew. And my husband jumped into action. Joe grabbed Ally and went to another room. I tried to make the area safe around Vicki. It was the same, except more awful. This can not be the new norm. The initial episode didn't seem to last as long. It was like she stopped herself. We gave her more room to move. She got up and took her plate to the kitchen. And then in one quick motion she leaned forward and bit herself in the palm of her hand. My husband grabbed her and tried to pin her arms down, She was thrashing her head around. Screaming. Trying to get her mouth to connect with her skin. Anyway she could. She kept moving her head and her little Pocahontas braids were flapping back and forth, she would latch onto one of those and try to bite her hair because that's all she could get a hold of. She calmed down and sat in the chair in the living room. She kept looking at her hand (thank goodness she didn't break the skin, but there was a bite mark there). She asked for cream and a Band-Aid and then for the doctor. Her hand hurt. We put on a cooking show to try to get her to stop thinking about it all. My husband sat right next to her. She kept picking at the band aid then would try to make marks on her forearms. And although she wasn't thrashing around so violently, she kept trying to bite herself or hit herself. And it got even scarier when she went up to get ready for bed. I was so afraid to let Vicki sit on the toilet because she was still so unpredictable. The fear that this kind of behavior instilled in me. I can't describe it. My reflexes are not super fast. What if I don't reach out in time. What if I can't block her? Yet again, it was another sleepless night watching the monitor.


I was hopeful that it was again a one night episode. But, same time, same place. At the kitchen table. This time right before dinner last night. That scream. Her body. Her eyes. It's not Vicki at all. How the hell do I help her? This time she had her fork and a butter knife in hand. Thankfully we got it off of her, and the only causalities were the butter container being thrown across the kitchen and a glass of water thrown and spilled. I will take that. As long as Vicki is safe. This time Joe wasn't home. He went to Boy Scout camp for the week. So Ally was on her own. I grabbed her plate of spaghetti and meatballs and ran her into her crafting room. I ran back out to help my husband get everything safe for Vicki, and then went back in with Ally. She was crying silently, her little shoulders hunched over, shaking. No one should have to see this. No one. No one should have to experience this. Not Vicki. Not my husband. Not me. And not a 10 year old child. Ally and I sat and talked at she ate by candlelight. We watched you tube videos on how to make some Barbie food. We snuggled. And we cried.


So that's where we are. I have been watching the monitor all night for Vicki. She's all snuggled up in her blankets holding Layse black cat, sleeping I think. I've been watching her sleep on the monitor as I type this this morning. I have more phone calls to make to the doctors, more questions that no one seems to have answers to. And so much fear and sadness. Please continue to keep Vicki in your prayers. Please let this SIB be over. I will be waiting and watching and holding my breath all day.


I think this may be a first. I didn't crack a joke at all. I can't smile. I can't laugh. This was really hard for me to write. This stuff is horrible. A living nightmare. I can't imagine what others go through who have severe SIB all of the time. Thank you so much for listening and for reading and for being there to comfort me. It means the world to me. I will draw on your strength and your prayers in the days and weeks that follow. xoxo

Day 22. Year 5.

I pulled up my blog today because I just had this need to write. I've kind of completely disappeared from life the last few months. Sorry. I feel like I've been doing that more and more lately. That's not a good sign for me. You know writing has always been therapy to me. But lately, it's like I can't bear to write what's in my heart. Because it feels so painful for me. You know I try to be an upbeat and positive person. I love to laugh. But lately it's been hard. I've had all of these feelings that I don't like having. I don't know what I feel anymore sometimes.  I don't want to be told how strong or amazing I am. Because frankly, I'm not. We all just try to do the best we can with the shit life throws at us.I want to apologize... I always try to write with humor infused so it doesn't get too heavy. But, life the last few months has been pretty heavy. I don't want to bring you down. So here's your warning. I've been sad. Read on if you don't mind. ;)


 I don't like feeling sorry for myself or jealous of other people. But I have been. That's why I kind of disentangled myself from all things social media. I've always loved seeing happy posts and seeing all of the fun people are having. It makes me feel connected to life, to people.  But over the past few months I just turn green with envy. It's horrible. I know that I don't know all of the silent battles that everyone faces. I know that the persona that most people show on facebook isn't their life 24/7. I know that when I post a picture it only shows you a snapshot. If you looked at the pictures that are on my camera right now, you would say... I don't know what she is complaining about. I don't know why she is sad. She has a beautiful family. 3 amazing kiddos and a really hot husband. ;) She is lucky and blessed beyond measure. And I am.  I know that. I really do. And I AM thankful. I really am. See, that's why I need to write sometimes. To remind myself of this. Because I get so caught up in the negatives and in the sadness and in the, 'oh, how I wish...' That's a dangerous place to go. Damn you autism.


It's not even that I covet things. I covet actions. I covet moments. I see big family get-togethers. I see trips to the pool. I see kids climbing on the monkey bars. It's summer. That's what summer is. Getting outside and enjoying the beauty. I covet what I perceive as 'easy enjoyment'. Look at those sticky sweaty tanned face kids with popsicle juice running down their mouths all crammed together sitting on the back porch steps. I wonder if their moms are appreciating that moment? I'm sure they are. Gosh I wish.... I wish...I wish that was something easy and spontaneous that we could do. The hell that Vicki is living right now. I can't even imagine. I wish everyday I could see inside that head of hers, inside her heart. I will write about it. I really will. Soon.


So I see how this post is going. Baby steps for me. This is not what I planned on writing. But maybe I just had to start with this. My frame of mind. My reference. Maybe I can't talk today yet about what's been going on with Vicki. I reread the last post I wrote. So much has happened since then. I wish I could say it was positive. But of course, if it was, I wouldn't be having so much trouble writing. Sheesh. What a post. Sorry. I will try to pick up where I left off next post. I'm just all over the place this morning.


It rained last night. My backyard is so muddy this morning. Seems fitting for my post today. Mud and dirt. That's what our backyard is. I can see the green grass in the yard next to us. Why? Why can't our family have green grass?  We keep trying. Maybe someday.... I hate saying.... it's too muddy in the backyard, wait til it dries out a bit. It never really does. You know?


I need to embrace the mud and the dirt. It exposes all of the roots in our yard. Yes, we keep tripping on those roots. But they are there for a reason.


Thank you for reading. Thank you for being there. Thank you for all of your love and concern and messages. Each one means the world to me. xoxo