Day 28. Year 5.

3rd and final installment of my 'Home-Bound in the Netherlands' trilogy. :) Just in case you aren't sick of me yet.

So technically, this isn't about what happened in the Netherlands anymore.... because what happens in the Netherlands... finally got blogged about and cried over... so now I can move on. Hopefully.
It still feels really strange though for me... to admit so much to so many people. I really hope that in some way my ramblings help not only me, but also help others going through whatever struggles they are going through. Autism or not, struggles are struggles.

It's funny. You know... do you ever say 'it's funny' when it's not really funny at all? It actually makes you really sad or upset... Anyway. Sorry. I've been writing too much today. It's funny how I still feel like people will read what I am writing... and think to themselves... I don't know what the heck she is complaining about. She went on a European vacation. Don't we all wish we could do that? Anyway, I just need to get over that. Vacation is a funny word. We chose to do what we did this summer because we felt it was the safest thing for Vicki and we felt stuck, like there was no other option, not because we wanted a European vacation. Autism doesn't realize that you are on 'vacation'. There is never a vacation from that. And so often I'm afraid that people think I am exaggerating when I describe the struggles that Vicki is having right now. That I am just lazy or don't try enough or do enough. We all have insecurities I guess.

Well.... onto part 3. So, we left the Netherlands. Vicki had a wonderful flight home. The flight attendant was super nice and gave her a window seat that seemed vacant. Well, the passenger showed up but she took one look at Vicki and just as the flight attendant was asking her if she could sit up a few rows, she volunteered herself. I am forever grateful to both of them. Vicki was content to look out the window the whole trip. I think it made her very happy. We were so hopeful when we got back to the US and walked out to the parking garage to get to our red van. We hoped against all hope that she was having difficulty getting into vehicles because it just wasn't our vehicle. No such luck. It was like all of the air in our lungs whistled out when we saw her response to the van. It felt like we were gut punched. Here it was. Again. Only worse if that's possible. The only positive spin on this was that there was more room, a bigger hole to get Vicki in. More space for the other kids. I don't want to rehash what it looked like. I did that in the last post. The one thing that was different? Someone stopped us. They took one look at the situation and stopped. Came up to us and asked if everything was ok. I applaud them, I really do. But it frightened me. I told the mom that Vicki had autism and explained a little about her trouble getting into and out of a van and how it got even worse while we were in a rental. She immediately nodded her head and smiled at me and apologized... saying that she was just a concerned citizen and hoped everything would get better soon. It scared my husband and I though. A lot. Here we are again, facing the same struggles and worrying about not only Vicki's safety, but our safety and protection. The ride home was awful. Vicki was so anxious she wouldn't keep her seat belt on and she kept trying to get out of the van. Joe was amazing the whole trip home. He held onto her seat belt and held her hands the whole way home, talking gently to her. Comforting her and being uncomfortable himself in the position he was sitting in. We all just wanted to get home and go back to the safety of our house. So we did. But it didn't end there. Of course by the time we got home Vicki wouldn't get out of the van to go inside. Time passed. And eventually my husband and son got her inside. We slept forever and tried frantically to find a way to protect ourselves.

Maybe just giving Vicki some time to relax at home surrounded by her things would help. Maybe she just needed to rest. We tried that. We rested a week. Didn't leave the house. Talked to everyone we could think of that might have some ideas of how to help us. We can't be the only family in the world struggling with this. We contacted our Sheriff's Department. Because Vicki has project lifesaver and we work with the police department on a monthly basis, we thought they would have some ideas. Here we go again with the 'what if's'..... What if someone stopped us again when the saw Vicki fighting us to get into the van? What if someone called the police? What if they came and arrested my husband? These were all very real and valid concerns in our eyes. We talked to lawyers, disability law centers, disability resource centers, our caseworker, our behavior team, our doctors. Everybody that we could think of. We got both of our licence plates flagged by the police with flagged notes that any officer would see if someone called it in. We had Vicki's birth certificate printed out along with both of our driver's licenses... family pictures, a letter from the doctor and from her behavioral therapist. We did everything we thought we could do to protect ourselves and we got it all notarized. We keep a copy of everything now in both cars.

So the next step.... try again. You are going to think I am crazy... but we decided to schedule the kids birthday pictures that we do every year at the Picture People. We go twice a year, once at their birthday time frame, and once at Christmas. So I have pictures of the kids every six months. I love seeing the changes in them. I don't know. It's very sentimental to me. Yes, picture day is always stressful for me. But, in general, Vicki likes it all. The process of dressing up all fancy. She even asked for make-up and glitter in her hair that day! She was ready. She loves that. And then usually after we take the pictures in the mall, we go for that ooey, gooey, greasy big sliced pizza. So that's what we attempted to do. She wouldn't get in our van. But we were determined to get her out of the house again.  So after quite a long time of physically trying to get her in the car, Joe and my husband were successful. But this time she wouldn't sit in a seat. She sat on the floor of the van. She wouldn't budge. So, eventually, we got her as safe as we could and Joe held her and we went for a drive. By the time we got to the mall, there was no fight left in us. But plenty left in Vicki. Some days you pick your battle. And today we just couldn't pick this one anymore. So I took Joe and Ally in to get their pictures. And I cried. I cried because this is the first time, EVER, that Vicki wasn't in the picture. It sounds so silly to be so upset about this. But it had a deeper meaning for me. I felt like I was giving up on her. So, I tried very hard to enjoy my time with Joe and Ally. And we had adorable pictures taken of just the two of them. And I know they will cherish it. And because I felt so terrible, I even threw in a glittery glass picture frame for both of them. ;) And we went home. And we struggled to get Vicki out of the van at home. And I cried.

There you have it. In a nutshell. Our summer. And our life. To this day. Right now.

Vicki is essentially home bound. At our house. At least that's how I look at it. We had to get her summer school changed to home-bound status. Her teacher came and worked with her at the house. We had to stop going to piano lessons. Vicki no longer goes to dance class. She doesn't go to Wal-Mart like she used to love doing. She doesn't go to the post office to check her mailbox and see if anyone wrote to her or sent her a recipe. She can't go to the doctor.

We've tried a dozen times or so over the course of the summer to get her out. But each time was the same. And until we find the reason/the cause for this.... what do we do? I say all of this like a blanket statement. Because  to me it is. Can we get her into the car? Yes. We can. Eventually. But at what cost?? Is she safe? No. Not usually. Could she get hurt in the transition? Yes. Could we get hurt? Yes. And we have. (Enter my sprained ankle from over 2 months ago that still swells daily and I can't walk on very well.) Does this transition cause her anxiety and fear and maybe even pain? Yes. I fully believe it does. And that is one of the biggest considerations right now. How much anxiety and emotional pain are we causing her? I really don't know. Because she can't tell me. And it's killing me. If my husband wasn't home, could I get her into the van? No. Not at all. So when my husband is not home, Vicki is home-bound. Have other people tried to get her into the van? Yes. Are they successful. Not usually.

See, the thing is..... you just never know with Vicki. What is the trigger? What is it that flips the switch? Sometimes it can be something so random. It can depend on how we manipulate the environment. It could be the person that she is with. If we wait her out, it can take anywhere from an hour to 5 hours to 8 hours.And I hate to use this as an excuse. But life happens. This is something that we deal with every single moment of every single day. I don't often have the luxury of waiting for 8 hours for Vicki to get into the van. If I have somewhere to go, I usually have to be there by a certain time. It can't happen now. And I'm sad to admit that I don't have the patience some days. I'm just done. That's one thing that people who come in for a day or an hour every few weeks or months don't really understand. This is everyday. This is our life. And it can be exhausting. I don't want to give up. I won't. But some days it's just so hard. I know Vicki wants to go places. She's not ready to give up either.   I've been doing a lot of research on 'threshold anxiety' and I fully believe that she suffers from this. How can I help her? I don't know. It's a vicious cycle. We can't get her in the car to get to a doctor safely. So we can't try different meds. And so it goes. And so we sit at home. And wait.

I promise I will write again soon to talk about some other stuff going on right now.... hey... I only have 2 more days to make my 30 day quota. I can't believe I used to write all in one month before. Wow. But for now, I think I'm out of things to say. I'm tired. I do feel better though. And thank you so much for that. And for being such a big part of my support. Thank you for all of the love for me and for Vicki and for our whole family. Sheesh, you know it was heavy stuff when I didn't even quote a song. ;) Love you all so much. Please continue to keep Vicki in your prayers. I can't imagine what she is going through inside. It is so hard to watch on the outside. We are starting a new behavioral plan this Saturday, hoping to shed some light on this behavior. Please, please, please... it's going to be very difficult in the new few weeks, months..... Please send Vicki all the love and strength you can muster. It is appreciated more than you will ever know. xoxo

Day 27. Year 5.

Well, now the flood gates are open. ;) Get ready.

Home-bound in the Netherlands. Part 2.

I could write for hours and hours about our experiences in the Netherlands. But I'm pretty sure you would get sick of reading about it. ;) Let me try to pick out the highlights. Or the low-lights. However you want to look at it.

Traveling with kids can be a nightmare no matter if the child has autism or not. Right? I was having all of the same nervous feelings that everyone else gets when you are taking your kids on a plane for the first time. In a confined space. With nowhere to escape to. But on top of that, having a child with autism can present very tricky and unique challenges. From making sure her project lifesaver band wouldn't set off the alarms at security, to trying to figure out how to configure Vicki's schedule so she knew that bedtime was going to be on the plane, to making sure we had all of her medicine packaged correctly. Routines and rituals are key to Vicki getting through her day. Change is not usually our friend. Picture me and Vicki in the airplane bathroom trying to put Vicki's pj's on. That should give you a chuckle. And now let's add on jet lag once we got off of the 8 hour overnight flight.. Yippi!!!

We tried to plan for everything. We thought about every scenario and tried to come up with solutions. But you can't plan for everything. Sigh.

So, obviously one of the most difficult aspects of this travel would be transitions for Vicki. Right?The whole reason we went to the Netherlands in the first place was because she was having such significant issues and I was unable to get her out of our van at home.  And I minimize other issues that we were having at home. It wasn't just getting out of the van. Globally things are affected. The difference is, we learn how to work around them at home to a certain extent. Anyway. This was the first time ever that Vicki didn't travel somewhere in our red van. So, we knew that renting a car would have it's share of difficulties. I am going to try to make light of the situation, but know that this is just a coping mechanism for me. In reality it was heartbreaking to watch and to be a part of.

We made it through the plane ride that had a barking dog a few rows in front of us (you know that Vicki, at this time, had so much anxiety over dogs). It could have been a disaster. But even though she heard the dog and was looking around, and squeezing daddy's hand tightly, the dog fell asleep and we made it through the flight. Phew. Now we get off the plane (which by the way, Vicki loved!!! I knew she would. She loves roller coasters. She loves going fast. Her face when we took off and landed. It was priceless.) She loved the plane so much that she wouldn't get off of it. I was waiting after we got off the plane with a very sleepy Joe and Ally in the terminal. No Daddy. No Vicki. No Daddy. No Vicki. Oh my gosh, what if we can't get her off the plane?? But he did. Finally. And we navigate the indoor subway thingy and get to our rental car place in the airport. A black Audi. Oh my goodness. Could not get further away from our red Dodge Caravan. Holy moly. All 3 kids in the backseat. Putting all of our luggage in that tiny trunk. Can you imagine?

This was the start of not good stuff. We knew it would be difficult for Vicki to get into a rental car. But we completely underestimated just how difficult it would be. 5 jet-lagged, exhausted people. And a little girl who just wouldn't get in the Audi. Not at all. We were parked right in front of the customer service booth thing. And we spent no less than an hour and half trying to get Vicki into the car. Everyone was watching. Everyone was glancing our way. We had tried doing different colored cars on Vicki's visual schedule. First/then scenarios. Oh gosh, we tried so much stuff. And nothing was working. Folding a 5'6" girl into the back of an Audi that was packed with other kids and luggage. I can't even describe it. The panic that I was feeling. Oh my God. What if we can't get her in this car? What are we going to do? We are in a foreign country. Oh my God. Vicki knows how to brace herself when she doesn't want to do something. I swear she grows extra arms. It's like there are hands and feet everywhere. It's actually really hard for me to talk about. I don't want it to sound like we are hurting Vicki. Because we aren't. But the strategic placement that Vicki has for bracing herself. It's almost impossible to break. Eventually we knew we had to do something. We couldn't sit there forever. It took Daddy, and myself and Joe and Ally. It took everything we had to get her safely in the car. We had to all work together, pin arms down, hold her. God, I know I keep saying this. But I can't even describe it fully. I don't want to . And Ally and Joe had to endure this. Then once we got her in the car it took every bit of energy we had to keep her arms and legs in so we could shut the door. And trying to get the seat belt on her. It was no easy task. I will move on now. So we are driving in the rain in The Netherlands, on roads we don't know, signs we can't read, a language we don't understand, exhausted and tired, with Vicki screaming the whole drive. And then once we got to the apartment we rented, we couldn't get Vicki out of the car. We couldn't get her in at the airport and now we couldn't get her out. And so it began.

Anytime anyone travels, no matter who it is, there is always an adjustment period. It takes time to develop a new routine, put your stuff in a new place. No different for us. And it takes a bit longer for Vicki. To sum it up... Vicki had a hard time. Way more than usual. We knew it would be difficult, because we were already struggling in our home environment that was comfortable for Vicki. Now lets add a different country. I completely underestimated the time change and the effect it would have on Vicki. Did you know that the sun didn't set until almost 10, 11 at night? And it was out by like 5 in the morning? This year Vicki has struggled more than usual with time. And this was awful. She wasn't sleeping. She couldn't take her eyes off the sky. And she was having so much difficulty transitioning within the apartment. So here we were in The Netherlands. And it was taking me 2 hours to get Vicki to stand up and get in the shower. She wouldn't move freely within the apartment. She found one seat on the couch and stayed there the whole day. Thank goodness for color wonder Frozen books. They seemed to help calm her quite a bit. And thank goodness for Air B and B and the owner of the apartment who gave us access to his Netflix account. So Ally and Joe got to watch movies on the big screen TV. We stayed in a cute little town only a few miles from the beach. There was a little canal behind our apartment building. It would have been so fun to explore the town on foot with the kids while Daddy was at work during the day. But we couldn't. So here we were. Home-bound in The Netherlands. Trapped in a vicious cycle for Vicki. It took everything I had to get Vicki showered and dressed by the time Daddy came home from work. All day long. Sitting in the apartment in The Netherlands. Waiting for Daddy to come back to us. I felt trapped. I felt sad. I felt like a failure.

I know this is going to sound horrible. But we did this. We chose to come to the Netherlands with Daddy because we knew that whatever Vicki was struggling with, it was better to face it together as a family. We spent money we didn't have. We added stress we didn't need. But, hot damn, we were in The Netherlands. And autism was not going to completely take this opportunity away from us. Autism was not going to keep us prisoner in this apartment. So we chose the struggles. We knew what we were facing. But we sat in the apartment all day waiting for Daddy to come home. By golly we were going to have the Netherlands experience. We were going to eat pancakes. We were going to check out a windmill. We were going to buy some cheese.

So we did. And every transition brought so much anxiety for Vicki and for our entire family. Some days she would jump right into the backseat of the car with a smile on her face, ready for the adventure that lies ahead. Other days it took an hour to physically get Vicki into the car. Some days she would jump out of the car and smile and hold Daddy's hand as we walked. Other days it took hours. We never knew what we were going to encounter until it happened. The fear. It's so real. Every time Joe and Ally got into the car they felt it too. And every time we chose to stop somewhere, to explore something... the fear was there. Will we be able to get Vicki into the car? Will we be able to get Vicki out of the car? Adrenaline played a huge role in our experiences on this trip. We did things we did because we had to . We fought things because we had to. I know that sounds so mean and horrible.

And here's the meat of it. Let me describe a scene to you. You see a 13 year old beautiful young lady (yes, I am bragging on my Vicki, mom bias). . And you see a 40 something adult male trying to get said 13 year old beautiful young girl into a car. Physically. And you see this beautiful young girl bracing herself and her body against the outside of the car. Trying everything she can do to not get into the vehicle. She is anxious. She is fearful.  And you hear her screaming. "Let go with me. Ouch. Stop. Wait a minute."Over and over.  I am crying as I type this out. What do you see? What do you envision? Exactly.

And that's it in a nutshell.

How do you get through this? A young girl who looks 'normal', I cringe as I write this. Sorry. And sounds like she is saying all of the right words I would want my daughter to say if someone were trying to abduct her. The shear fear that we had. HAVE still to this day (post number 3 will be coming). I can not tell you how petrified I was in a foreign country with this new behavior. Having trouble getting out of our van was one thing, but having trouble getting into a vehicle poses a whole slew of new difficulties. And we never knew when it was going to happen. It's unbelievable to me that although Vicki doesn't have a lot of verbal communication, that she can yell these words at the 'right' time. It broke my heart. So that's it. Every time we tried to go and do something, go eat, go see something.... we just never knew.

We tried so many different things. I made sure that I was standing by my husband when he was getting Vicki into the car. And you could see that we had other family members in the car with us. But still. The thought crossed my mind that the police would be called and my husband would be arrested. I don't know what it speaks to for society that no one said anything at all to us while we were in the Netherlands. Of course I am relieved about that. But still... to see a struggle, sometimes for hours on end, and to hear a young girl yelling, and to not know the medical circumstances surrounding it.... I don't know.

There was even one day that we just couldn't fight it. So my husband drove Joe and Ally to something nearby and I stood outside on the sidewalk with Vicki. We were hoping against all hope that something would click inside of Vicki... that whatever switch we needed to flip would happen when she saw that she wasn't getting in the car. Sometimes we try to manipulate her OCD and the things that she comes to expect. I know that sounds horrible. But sometimes we are desperate. In Vicki's mind it's Joey, Vicki, Ally, Mommy and Daddy. So if she sees its not all of us... maybe it will bother her. So we stood on the sidewalk, me and Vicki, in the wind, waiting for Daddy to come back with Joey and Ally. We stood for about 30 minutes. And Vicki kept looking at all of the black cars. And she was crying. It was awful. And then they pulled up again. And with every fiber of my being I prayed that it would work and Vicki would get into the car. And she did. But what if she didn't that time? What would we have done? It was a place where we weren't comfortable physically putting her in the car. I know by now you probably thing we are monsters. And sometimes I feel that way myself. But we have to live life. We have to all live life together.

And there were moments. There were amazing, beautiful moments that we experienced. That with the passage of time I am smiling more at. Vicki ate some amazing food. I really feel like she starting getting over her fear of animals over there. We walked a lot... because driving was so difficult. And there were so many dogs walking. Vicki even asked to ride in a horse and carriage ride on the day we went to Belgium. Oh my goddness the smile she wore on her face and the squeals of delight as we trotted through the cobblestone streets. I will never forget it.

We had moments. We sat outside in one of those huge squares... where you people watch and see beautiful buildings and sites... We ate. My husband and I had a glass of wine. But you know what I still remember about that moment? The hour of moments that we spent in the restaurant's tiny, tiny bathroom right before that. You think a bathroom on an airplane is tiny? This restaurant was even worse And it was so hot and claustrophobic in there. And Vicki's anxiety was so bad. All throughout this trip she started developing patterns and rituals she had to do... Like asking to go potty. Everywhere. When she didn't really have to. But we would stop. And then in this small cramped bathroom Vicki would take off her bottoms... and throw everything on the floor... and sit. And yell. And say, 'make yellow'. But she wouldn't pee. She didn't have to. But she had to because she made herself have to. You know? And there was a line of people that wanted to use the restroom and I couldn't get Vicki to stand up. And I was crying. And Vicki was yelling and she was so distraught. And Ally and Joe were sitting outside in the square waiting for us. And then my husband came back. 3 of us in the tiny bathroom trying to get Vicki's clothes back on her and stand her up. It was beyond awful. And then she kept yelling that she had to go potty and we were so afraid to take her anywhere else. And those are the moments that stick out to me. Still.

The fear. The anxiety. The not knowing if your child would be able to get into the car or not. That's what our trip to the Netherlands was. That's why we were 'Home-bound in the Netherlands'. Thank you so much for going on this journey with me. I really needed it. And I will finish up with my trilogy this evening. Sorry for posting so much right now. I love you all. xoxo

Oh, and ps... the question that I asked myself after it was all over. Knowing now the things we experienced over there, would I choose to do it all again? And the answer.... simply. Yes. I would. Because we will not let Vicki or our family become a prisoner to autism. We are stronger together. The moments. They were worth it. I know that now.

Day 26. Year 5.

I've started writing this post a gazillion times over the last few months. And then I delete it. I don't know why it's so hard for me. But here it goes. I will try my best.

I've titled this post "Home-bound in the Netherlands" and here's why. Normally I am an over-sharer with my life. You probably hear way too many details, many more than you would like.  So, why? Why would I not share (with the exception of a few people) the exciting adventure that happened this summer? We went to the Netherlands for almost 2 weeks. Gasp. Crazy right? And you know what's even crazier? I haven't posted one single picture from this trip. I haven't written one facebook post about it. I never turned on my locator that said where I was. We went to The Netherlands. Never in a million years did I think I would ever travel to Europe. Ever. It was all just a dream. A secret pinterest board that would never come true. Beautiful places, amazing food, exotic images. My kids in Europe. My husband and I strolling down the canals hand in hand, sharing a bottle of wine over a beautiful dinner. It's picturesque, right? And I can show you some pictures, some pictures that would look like it was the perfect family vacation. Some pictures that are exactly what I would imagine a trip like this looking like. But autism, damn you autism.

This was the first time that we've been anywhere outside of the US.The first time we have ever gone anywhere that we didn't drive to.  This was the first time we actually used our passports! This was the first time the kids had ever flown on a plane. There were so many firsts. So many things we did and saw. I don't want to sound ungrateful. And I think that's a big reason I didn't talk much about it. I realize deep down how lucky and fortunate and blessed our family is. We had some amazing moments. Memories that will last a lifetime. I don't want to take that away from this trip, this experience. But...it was hard. So very hard.

Memories. Memories are a peculiar thing. You know how there are some experiences in your life that stand out, that you remember so vividly? Some memories that you look back on fondly with a smile? And some memories that are so sad, so heartbreaking that your breath catches in your throat and you almost can't breathe? Memories that you want to forget.  4 years ago when my dad died, for months and months after he passed, the only memories that I could visualize in my head were of the last hours of his life. Sitting in the hospital room with my mom, watching my dad's labored breathing and seeing his chest rise and fall and rise and fall and then just fall. I wanted to remember all of the good moments, all of the smiles and jokes and peaceful quiet moments that I shared with my dad over the years. But I couldn't. Now, 4 years later, that haunting memory of my dad in the hospital room is fading some. And it is being replaced by happier times and memories. This was a pretty extreme example, sorry... I've been thinking about my dad a lot lately, he died in September and his birthday is in October. Anyway.... I do that with other events in my life as well, as I'm sure you do too. I can look back on family vacations that happened years ago, and now I try to selectively remember the good moments, And the bad moments I try to let fade into the background. Maybe that's why it has taken me so long to open up about our trip to the Netherlands. I needed some time. Some time to distance myself from some of the memories that overpowered this trip.

There were a few people that I told about this trip before it happened. And I had a few comments like, 'oh my gosh. You are so lucky! That's awesome! We've always wanted to take a trip to Europe. But we just can't afford it. We don't have time for it.. How exciting for you!'. And it's odd. It made me sad. Really sad. Because taking this trip to The Netherlands wasn't a trip that we envisioned, or planned for, or fantasized over. It was a trip of necessity. It was the lesser of 2 evils. How awful does that sound? Who in their right mind would describe their first time trip to Europe as 'the lesser of 2 evils?' We did. Because autism made us.

My husband got told that he had to travel to The Netherlands for a business trip. There was a conference that he needed to attend. How awesome, right? So exciting!! Well, the last time my husband had to take a business trip (he travels to New Mexico a lot for work), he had to leave in the middle of his trip to come home because of some issues that Vicki was having. I can't work outside of the home because of autism. And medical bills alone are astronomical for Vicki's treatments. My husband needs to work. His company has been good regarding all of the time off he has to take for doctor's appointments, school meetings, etc... etc... They have tried to limit his travel, especially the last few years. But when you are told you have to go, you really have to go. He needs his job. And the timing for this trip was not good. Not good at all. Vicki was struggling.

I am fortunate that my husband is an amazing dad. He has such a special bond with Vicki. When Vicki was born and spent a week in the NICU... we couldn't hold her or touch her. And then when she came home, we had a very difficult time breastfeeding. I ended up pumping for 5 months and it was Daddy who was able to get Vicki to drink breast milk from a bottle. He has always had a calming effect on her. Along with his demeanor with her, he is a pretty strong guy. He played football in high school and wrestled in both high school and in college. So when my 5'6" sweet Vicki is struggling, it's Daddy that is able to physically help her.

So back to the trip. We made a very difficult decision. We decided to take the whole family to the Netherlands for Daddy's work trip. Is it something we were planning and looking forward to? No. Is it something that we saved money up for? No. Not at all. Is it something that we felt we needed to do? Absolutely. 100%. Why?? Because it was the lesser of 2 evils. Yes, Vicki was struggling. Struggling so much that there were days when we couldn't get her out of our van after school. I know I wrote a little about this part before. But I can't even remember how much detail I went into. It was bad. Really bad. So much so that there was no one that was physically able to get Vicki out of van. No one except Daddy. So when we would get home from school at 4, there were days when Vicki sat in the van until Daddy got home from work at 6 or 7. We tried so many things. Everyone was stumped. The behavioral specialists had no ideas. From tokens, to reinforcement, to you name it. We would even try to just wait her out, but she has demonstrated that she can wait for 8 plus hours. So, what do we do? What if, while Daddy was gone on his business trip, I had to go somewhere? Take the kids somewhere? Do anything. Go to the store and get milk. Whatever. What if there was a medical emergency? So many 'what ifs'. Yes, I live my life by 'what ifs'. I live my life with back up plans. I have to. What if I couldn't get Vicki out of the van?? This seems like a ridiculous question. But if you could actually see the struggle for Vicki, you would realize that it's not a ridiculous question. My husband just couldn't do it. He couldn't fly halfway around the world knowing that the struggle was very real and that there was a high probability that Vicki wouldn't transition out of our van. How could he travel like that?

So, we hastily put together the trip for a family of 5. We cashed in every frequent flier mile that my husband had accumulated over the years. Did we have the money to take this trip? No. Not at all. Did we feel like we had to take this trip to keep Vicki safe? Absolutely. So there it is. We went to the Netherlands with Daddy.  And we were determined to make the most of it. Do I think we will ever travel to Europe again? Probably not. So this blessing in disguise... we were going to use it the best we could. Whatever happened, we were going to be together as a family. And we are always better together.

OK. Well, this post is long already. And I haven't even told you why we were 'Home-bound in the Netherlands'. I haven't even told you why I really didn't want to talk about this trip. So let's just call this Part 1. I guess I really had a lot that I wanted to talk about. Thanks for listening. I hope that after I write this 3 part segment that I will feel better. I just need to put it all out there. Love you all. xoxo

Day 25. Year 5.

I kept thinking... I'm going to write about this summer. I'm going to write about this summer... But then I don't. Talking about this summer is hard for me. So, I'm switching gears tonight a bit.


You know, Vicki has always loved her Disney Princess movies. Every year for Halloween she chooses someone to be... She's been Jasmine, Ariel, Cinderella, Belle.... I've loved putting unique princess costumes together for her. Because she is such a tall, shapely young woman, she didn't fit into the children's princess costumes... and the princess costumes for adults, well, no thank you. I don't want sexy thigh-hi's and plunging necklines for Vicki. So, I go to Goodwill and look at their dresses... we've found some amazing dresses that we tweaked to give Vicki just the right ball gown look she wanted. :) Sorry, I know I am just off and writing right now, I do have a point, somewhere.


I believe very much in fairy tale endings and magical stories filled with princesses and happily ever afters. I love the look that Vicki gets on her face when she dresses up like a princess and we do her hair and make-up. I love seeing her smile at her reflection in the mirror. When we went to Disney World when Vicki turned 7, the pictures of her with the princesses are ones I will cherish forever.


Do you want to hear something magical?


Well, this tale tonight, as much as I want it to be about Vicki, is not. But it's just as magical. It is about my sweet little Ally and her fairy godmother.


I've been posting some of the difficulties that we've been having this summer. My last post dealt with Ally and the kind of summer she has had. Like I've said countless times before, autism does not just affect the child who has it, it affects siblings, moms and dads, families, friends. And this summer it has affected Ally tremendously.


The kind of life we live... it's definitely different that a lot of families home lives. It just is. Our home is open and on view just about 24/7... it is a revolving door for the therapists and aides that we so desperately need.  They see us at our best and at our worst. They are there when we are in our pj's, they are there at the dinner table. They see us laugh. They see us cry. They see us be brats and pout. They see us dance. They see us be a family. We couldn't function without them. But it's definitely a different kind of home life. We have down time, but it's just different. And we are structured. Very structured. I'm not sure I can remember what the word spontaneous means. Especially after this summer. Things I used to take for granted: the 30 minute outing to guitar lessons. A quick trip to the grocery store. Stopping off at the library for a book. It's all gone. It all needs to be carefully planned and orchestrated. And a lot of the times it never happens. Most of the time it never happens anymore.


OK. Sorry. Enough of the build up. Let's get onto the story.....


Once upon a time, there lived a little girl named Allyson. She lives in her house with her mom and dad and brother and sister. She loves crafts. She loves people. She loves to be active. She loves to do things. She loves to just be a kid. But this summer, things changed a lot. She had to stay at home because autism made her. She has only been to the pool 2x this summer.... because a wonderful friend took her once, and an old therapist took her the second time. She went to the library 2x because a good friend took her. She never got a chance to go to the park. She didn't go out for a spontaneous ice cream. She didn't do any summer camps. She shut herself away in her crafting tower and crafted, and crafted, and crafted. She escaped to her craft room when things got difficult. She never complained that she couldn't do some of the carefree activities that summer brings. But she was sad. And she was anxious. And she cried.


And then one day, her fairy godmother called. And her fairy godmother knew. She just knew how hard it was for Ally. And she wanted to be there for Ally.


So here we are....bippity, boppity, boo.


Ally sat in her beautiful carriage (a jeep!!! in the front seat!!!!!) and she was off for an adventure to VA Beach with her Godmother. The woman who held Ally in her arms when she was baptized... who promised to be there for Ally and help to guide her.... is taking Ally on a fairytale adventure. She is everything I could have ever wished for in a godmother for my Ally.


So far I have hear from Ally excitedly talking about all they have done.... the beach, the pool, the beach, the pool, playing, a magic show on the beach, fireworks, a speedboat dolphin watching tour, miniature golf. The whole experience. I have been seeing pictures of Ally with a beautiful sun kissed glow and a smile that dazzles from ear to ear. She has a sparkle in her eye. She looks so happy and healthy and peaceful. She has fit all of this in since just yesterday! And she still has 2 more days to enjoy her enchanted land with her fairy godmother.


What  an amazing gift Ally's godmother has given her. I don't think she will ever fully understand what her gesture and this trip means for Ally (and for me!) Ally is out of her tower and enjoying a few days of summer. She doesn't have to worry about anything. She can just be a kid. My heart is so full with the generosity of her fairy godmother. She has given Ally some amazing experiences and memories to look back on. I can't even express how touched and humbled I am by this most precious gift. And it's the gift of time. Of time that Ally can just talk to her godmother, open up to her, share with her. That, to me, is priceless and I am forever grateful.


I should just stop here...and I keep thinking about it. But, because I am trying to be honest, I am going to keep going for a second. Do you know one thing that I have been afraid of since Ally has left on her adventure? That she will begin to resent her life with us, with Vicki, with autism. You know that phrase, ignorance is bliss? Well, if Ally never really experienced anything outside of our life at home and our life on our vacations... she never really understood how different our reality is. Now that she sees a different side... an easier side... a spontaneous... fun filled side, what will she think of the planning and the preparation, and the disappointment with us? We will never be able to give Ally what she is experiencing right now. It's impossible. I know that won't really happen... but sometimes I even close my eyes and wish some similar thoughts. Wishing for so much. Wishing for autism to leave our sweet Vicki alone. Wishing for that smile on Vicki's face. Wishing for the fear and anxiety that I have over Vicki's fear and anxiety to disappear. Wishing that every moment wasn't so calculated, so planned. Wishing that I could just yell.... get in the car kids... let's go out for ice cream. Wishing that Vicki would be able to climb in the van and leave the house. Wishing, wishing, wishing..... And... bippity, boppity, boo. It would happen. I guess you never know. I do know that I will never forget this moment in time that Ally was given from her fairy godmother.


Anyway..... that's it. I'll leave you with a favorite quote of mine by Hans Christian Anderson.
"Life itself is the most wonderful fairytale."

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

Day 21. Year 5.

Thanks for the good thoughts and prayers... getting Vicki to transition from our van into her school yesterday didn't go the absolute worst it could have gone, but it didn't go well at all. Would you like to hear today's comedy installment? ;) Seriously, if I didn't laugh at myself and absurd situations, I would be in a very dark place. 

 We got to Vicki's school on time. (whoop whoop!!) She wouldn't get out of the van. (Usually what we do is that Ally gets out of the van and hangs out with me as we are getting Vicki's coat and backpack ready for her. That's what we did again. Cool. Calm. Collected. My secret deodorant was working over time. ;) Don't let Vicki see you sweat! 

Anyway, I tried my usual go-to's for a while... with no success. And Vicki, being as smart as she is, stated,'Ally. Van. Close door. Ally school.' Yep. Because that's what I ended up doing on Monday. But, demonic laughter, {muah, ha ha} that's not what was going to happen on this day. So we wait. And wait. And then. Yep. You guessed it. Stink bug attack. Ally starts screaming at the top of her lungs because a stink bug landed on her shoe. 

What? You didn't guess that? ;) 

Now, I'm no fan of stink bugs... and I had open toed shoes on.... BUT, me being the brave mommy that I am, I did gently kick the stink bug off of Ally's shoe into the middle of the parking lot. Very calmly. Again, thank you secret deodorant..

Now. Back to our regularly scheduled Vicki. 

She still wouldn't get out of the van. So I called into the school and we arranged for her autism teacher to come out and try some things. You know what.... I really can't talk seriously about this incident right now. I need to smile and I need to laugh. So, I am not going to go through what we actually went through.  I will save that for another day. That's hard for me. 

OK. So, on top of everything else, my 'contingency' plan was pretty non-existent. Some options that I usually have were not available, One thing I completely forgot was that our drywall guy was coming over. Early. And I didn't think to figure out a way to let him into our house. I had no idea how long this would go on. It could potentially last hours. And I didn't want our poor drywall guy sitting outside of our house. So, I texted him the school's address (it's only about a mile or so from our house) and he had no problem meeting me so I could give him our garage door opener. But of course, as soon as I made that arrangement, Vicki decided it was time to go into school. Of course. 

Now, I never underestimate Vicki. I feel like she has a sense about things that I have no idea how she does it. For example, the other day when I picked her up after school, she said 'Mom gas. Red van.' Either she knew I was having stomach issues (ha!)  or she knew that my low gas warning literally just clicked on right before I picked her up. How in the heck did she know that? Does she pay attention that closely that she knew I would need gas in the van? Interesting.... Anyway, did she know that I rearranged things at that moment so she decided to comply? I'm sure it was just a coincidence, but gosh it's crazy. When Vicki decides it's time to do something, it is. And it becomes like nothing happened at all. 

So... about 50 minutes after we arrived at Vicki's school, she walked in. And I had to hurry and make sure I didn't miss my drywall guy pulling up in the parking lot. We walked Vicki in and then Ally and I scoured the parking lot for his truck. We waited. And waited. And finally saw his truck pull in at the bus parking lot... then disappear. I am waving my hands in the air like an idiot running around the parking lot with my garage door opener. He sees me and then goes back to the main road and pulls in the right parking lot. We roll our windows down and make the garage door exchange. Phew. 

And then I take Ally to school and she got to her school 45 minutes late. I wrote a note to her school counselor to let her know what's been going on with Vicki. Occasionally Ally will have lunch with her and talk through some things. I never underestimate how much incidences like this affect my kids. All of them. It's not easy at all. It's so hard that I couldn't even write about it this morning. And in a little over 2 hours we will be doing this all over again. Hopefully without the stink bug or the garage door opener incident. And hopefully with Vicki getting out of the van easier than she did yesterday and the day before. I tried to make this lighthearted, I need to smile again, and thank goodness I am finally starting to feel better from my stomach bug. But, in all honesty, these situations are heartbreaking and so very difficult for everyone involved. If you could continue to pray for strength for all of us and send good vibes to Vicki so that whatever internal hurdle she is facing, that she can win. xoxo

Day 20. Year 5.

This one is going to be fairly quick.... but I really wanted to say thank you first. Thank you all so much for reading and caring and loving and reaching out to me. It means the world to me. One of the hardest things, I think, for a person to do, is to admit when they need help and when they are just defeated. No one can do it all alone. And I am humbled by the outpouring of love and encouragement that I have received. I plan to do a happy blog sometime soon... but today isn't quite the day for it.

Sometimes I feel like my life could be one of those slapstick comedies. Yesterday was one of those days. I would be laughing myself if I were watching it on TV and it wasn't playing out in my life. But I am cracking a smile right now as I go to type, so that's progress. ;)

So.... Ally FINALLY got over her stomach virus. Thank goodness!! It was horrible. It lasted from Sunday through Friday night for her of last week. How do I know how horrible it was? Yep. :( Because, of course, I got sick Thursday evening and am currently on day 6 of it. I am hopeful that I will be over it soon. It's been very difficult. So... comes the slapstick comedy:

Picture this:

Ally is excited to go back to school after being off for spring break and then the entire week of her birthday because she was sick. She had gotten her ears pierced for her birthday and was super excited to see her friends again. Joe, thankfully, although he still had a cough, went off to school without incident. Daddy was home because we had a meeting to attend for Vicki's BIP and ESY (behavioral intervention plan and extended school year) at school. He was waiting at home for a drywall repair man to come and fix our ceiling from our skylight leak. Mommy, who at this time was working on day 5 of her stomach virus, was really not feeling up for much of anything but got the girls ready for school.

Everything was going as smoothly as it could until we got to school for Vicki. Remember the other day, when I told you how difficult each and every transition is for Vicki? Well yesterday it was a difficult transition from the red van into her school. It was so difficult that after 15 minutes of trying to get her to get out of the van and walk into school, I had to just leave and take her with me. That has not happened this year at all. I've always been able to get her out of the van, give or take 10 minutes. Well, Ally had missed a week of school and I really didn't want her to be late. So, I kept Vicki in the van and we dropped Ally off at school in the car rider line (so Vicki just had to sit it the van). Ally got to school on time. Check. Phew. Now what to do with Vicki?

I called my husband, and because he just so happened to be home for our meeting which started at 10, I asked for his advice. Because no matter what happens, I already kind of shot myself in the foot by leaving Vicki's school without her getting out of the van. I knew he could get her out of the van, but didn't want to do that. Because he's not available every morning, and I didn't want to start something.... And it only takes one time for Vicki. Only once, and it becomes her new norm. So I went back to Vicki's school. I called the school and told them what was going on. I sat and waiting. I have a lot of strategies I try to use to get her to move, I can describe them some other time. But nothing. She just sat. And after waiting there for another 30 minutes, remember.... I still have a stomach virus.... yep. I had to go to the bathroom. Like, now. So, again, didn't want to do it, but had to.... I got back in the van and went home so I could use the bathroom. Sigh.

And the end of our story... by this time the drywall guy had come and Daddy was ready to go to the meeting. I used the bathroom. So, we just went over to the school altogether. After a few minutes, Daddy got her out. I admitted defeat. Now, I am not able to get her out the way he does, or I would have.... No one else can. Anyway.... we made it on time for our meeting. Vicki walked into school. I sat in the meeting for 2 and a half hours praying I wouldn't have to go to the bathroom. And there you have it. Come on, it's so sad, that it's kind of funny.... ;)

I have to go right now and get Vicki ready for school this morning. The reason I wanted to write this is because if you get a chance to read this now, can you say a little prayer for Vicki and for me? Give us a little more strength.... I am not sure what that transition will look like this morning and I am scared. Thank you all so much for giving me somewhere to talk about things. I love you. xoxo

Day 15. Year 5.

I'm sorry I haven't been keeping up with posting. If you want to know the truth, I am overwhelmed. By everything right now. :(

This may be a bit of a scattered post. But it's 4:30 in the morning and I've been up most of the night...
it's actually because of my youngest, Ally.... She's been sick since Sunday night... hence, why I haven't been posting. This is going on day 5 for her of the worst stomach bug ever. I feel so bad for my sweet girl. And it was Ally's birthday on Tuesday, double digits. I hate seeing my kids sick, but it's really sad when they are sick on their birthdays....

I just want to cry. And yell. Please give our little family a break. It's been such a rough year. And a really rough spring break last week and this week... and I just pray that I can get all of my kids healthy. Joe is still coughing a lot. It's better than it was, but... still crappy. And since Vicki's episode on Friday in the shower, she has been better.... but we still have no answers for that. And honestly, I am so scared every morning when I am in the shower with Vicki now. And now Ally being so sick.

It's hard enough when any of your kids is sick, but to have multiple problems with each of them simultaneously is making me feel very overwhelmed and helpless. You know that Vicki's emotions are, well, different. She finds things funny that most wouldn't. She laughs when others are crying etc... And it was so hard last night (well, a few hours ago) when Ally got sick while she was on the chair in the living room. It was one of those moments when I knew I needed to help Ally somehow, but you just feel lost, like you are moving in slow motion and wondering how to catch the vomit and clean her up and make her feel better without completely covering the house in yucky stuff... Anyway, while this is going on, Vicki was sitting at the table and she saw Ally throw up. And Vicki thought it was funny, really funny. So as Ally is throwing up, Vicki is laughing. And I have no idea what to do.

So... on top of all of the sickness, just day to day stuff is getting to me as well... I know I say this all of the time. But it happens all of the time.... and it takes such a toll on me. Not knowing if Vicki will move from one place to another and knowing I can't really do anything about it if she doesn't... It's so hard. I literally hold my breath each time we move from one place to another. From the table to the van in the morning before school. From the van to the school. From the school to the van. From the van back into the house. From the chair to the van for dance class. From the van to dance class. Every transition in dance class. Every. Single. Transition. From dance class to the van. From the van to our house. From the chair to the bathroom.From the bathroom to the chair.  From the rocking chair to the kitchen chair. And the list goes on and on. It's every single time Vicki goes from a sitting to a standing or a walking position. It's every single time. Sometimes it's quick. Sometimes it's not. And I wait. And wait. I know this may not sound difficult. But it is. It's so hard. And it's so overwhelming and exhausting. Emotionally. Physically. Sigh. And you know what else?? Having to talk about it all of the time with professionals on our team is just as hard. So often I am so tired of talking. It's years and years of going around about the same issues. Having tried hundreds of different approaches and plans. If I am not living it in real time, I am talking about it and analyzing it.

Geeze. I'm sorry I am such a downer today. I didn't mean to whine and complain so much. I think I am just tired. Thanks so much for listening to my rants. Love all of you so much. xoxo

Day 10. Year 5.

I skipped ahead to today's post (will go back later to the last 2 days). The reason for this is that I am very emotional right now and I have a lot I just want to write down.

For today, let's pretend that I am just writing a note to myself. It might not make a lot of sense. But I don't understand things, and if they made sense to me already, I wouldn't feel like I had to figure it out. I know I've said this more than once. But... I will say it again. I really, really wish I could take Vicki to see Dr. House. (Remember that show?) Sigh. There are just so many things going on with her medically. I don't understand. And I feel like there should be an answer. Something that we are missing. Something that we have all overlooked. I just want my baby to feel better.

On my personal facebook page I wrote a lot the past few weeks about a gut feeling I had. Vic was crying so much.... more than usual. She was crying about 15 times a day. Like, pained cries. So, we talked to our developmental pediatrician and based off of some of the concerns and symptoms she was having, he referred us to a pediatric GI guy. Just to recap. We loved him. His bedside manner was fantastic, he didn't make me feel stupid or dismiss my concerns and he was very good with Vicki. After taking a belly x-ray, he determined that she needed to be flushed out (which surprised me, because she goes every night.) Without giving you too much information... we kept her home for 3 days. I think it was a little better, but not crazy different. Although she wasn't crying quite as much, so that was good. After that we started her on a daily laxative the doctor prescribed. And then she had her sedated upper endoscopy. The doctor found evidence at the base of the esophagus and entrance to the stomach of gastric reflux. Everything else came back normal. So he started her on a daily medicine for that.  I thought things were going in the right direction medically. At least I was hopeful.

But this am as I was showering with her (which I've had to do for the last 3 years)... it was the same kind of thing that happened about a month ago... and a month before that.... Part of what lead us to the GI doctor in the first place. In the shower, her back was to me... at first I thought she was playing.. just swaying back and forth... but then I realized she was getting ready to faint? Maybe. I grabbed her by her hair because that's all I could catch (she was slippy wet) and turned her towards me. She looked white as a ghost and her lips were really, really pale. A very odd color. She was breathing a bit odd and I thought she was going down. I screamed for my husband, he's home for spring break..thank goodness.He came running. He held her up while I got dressed and she threw up in the shower. 2x. But there wasn't much that came up at all... (sorry, tmi again) no chunks at all of food just a little pale yellow and a bit of mucus. She had asked for water before she got in the shower a few times... a little odd in and of itself. . Anyway, while all of this was happening, my husband looked at her eyes and they were completely dilated. We even turned the bright lights on in the bathroom and no reaction. After she got out and sat down for a minute or 2, her color slowly started to return and eventually her eyes returned to normal.

I really don't know what the hell this is. It's scaring me. 3 times in the last 3 months that she's almost passed out while in the shower and threw up. It just doesn't make sense to me. Could she be having an odd kind of seizure? And it's only the few times in the shower, the rest of the day she doesn't throw up. She eats. She drinks. She's acting strange a bit, but she looks better the rest of the day.

So, please if you know Dr. House... can you see if he can see Vicki? ;) I'm kidding, of course. But I really don't know what to do. I just get this feeling that there is still something very wrong and that we are not getting to it. I have contacted Vicki's team of doctors. We'll see what they say now.

Thanks for listening. I'm sorry I'm not witty or funny tonight. I'm just scared for my baby. xo

Day 7. Year 5.

Gosh... sadness seems to be permeating this blog so far this year. I'm sorry. I just try to be honest. And honestly, I am sad quite a bit. But I also like to smile, so that balances things out. :)

So on Tuesday... I decided to try to break up the day a little bit. Ally had been wanting to see Cinderella at the theater. I figured it was a good day to go and see it with Ally still hobbling around on crutches and Joe still coughing too much to go sit in a movie theater. And Vicki was ready to get out of the house and into our van. I was able to get one of Vicki's aides to come up and go with us. Girls afternoon out. Perfect.

Vicki seemed really excited to go. She wore a pretty pale blue shirt and she wore her hair down, long curls all around her face. She wanted some make-up on. We were going to see Cinderella. We were going to do it right. :) She looked so lovely, with a little bit of blush flushing her cheeks and she wanted some red lipstick.

Off we went. Giggly and excited.

And that ends our happy event.

I think one of the things that scares me the most is the unpredictability of it all. I know a lot of people probably think I am too much of a planner when we go out. Always wondering and planning for the 'what ifs'.... But I learned long ago, that if I didn't have a contingency plan, I would be in trouble. On the days when I think Vicki will struggle, she does amazing.  On the days when I think an outing will be a walk in the park, it is not.

Ally and I got out and bought the tickets. Because Ally was hobbling on her crutches, I needed to give her a little extra time. So we went on ahead. I thought Vicki was on her way out of the van with her aide. Nope. She was sitting in the van. She knew what we were going to do, it was there on her visual schedule. She had seemed excited. But when it was time for her to transition. She just didn't. And when Vicki doesn't want to move, Vicki won't move. And there is not much we can do about it.

So, I took Ally in and got popcorn and seats. I kept texting with Vicki's aide. Nothing. She wouldn't move.  :( The movie started. Still no Vicki. I ended up running out to the van to see if I could get her to come in. Nope. She was happy as a clam just sitting in the van. (I've often wondered where that phrase came from, are clams happy creatures?)

Ally and I enjoyed the movie. Vicki's aide sat with her in the van for the course of the movie.
And then we came home. And that was that. It made me sad that Vicki didn't go into the movie. But I was glad that Ally and I got to enjoy it together.

It's so hard sometimes. This is just one small example of any given day. Why do I freak out with my plans so often? Because of days like this.... If I didn't have an aide with me, Ally and I would not have been able to go to the movie. By the way, the guy behind the counter at the theater was very nice and refunded our money for Vicki's and the aide's ticket price.

I can never assume, even on a good day that something as 'easy' as walking into a movie theater will be accomplished.

I'm sorry this post isn't witty or funny or full of wisdom. It's just a day. But I will leave you with a quote, from Cinderella, of course:

"I want to tell you a secret that will see you through all the trials that life can offer. Have courage and be kind." 

I always want to have the courage to continue to open doors for Vicki to explore the world around her. No matter what the challenges are. Just because this day was not a good movie theater experience does not mean I won't ever try again.  And no matter how much something may test my patience... I always want to be kind. And smile. It's a good reminder. xoxo

Day 6. Year 5.

Some days I just get really sad. Monday was one of them.

Spring Break Week.

We typically take a little vacation somewhere... and we usually end up at a beach. Vicki loves to ride in our van.And she loves the ocean.  Especially when it's Vicki, Ally, Joey, Daddy, Mommy. Gosh, how I wish (doesn't everybody...) that we had unlimited funds and unlimited time. The places we would go and explore. Sigh.

Anyway... not the point of this post. We had planned on taking a little trip up to PA to spend a few days with our families this year for Spring Break. But that didn't happen... With Ally stubbing her toe so bad we had to take her to urgent care on Easter for x-rays...she ended up on crutches, of course... And Joe's asthma deciding to flair up with this Spring weather... he must be coughing at least 30 times a minute. Lots of new meds and nebulizer treatments for that kiddo.  Anyway, with 2/3 kids kind of out of commission, we decided to stay at home for a little stay-cation, rest-cation, get better-cation.

Vicki was confused. She knows we usually travel somewhere over spring break. She loves the van.
And now we weren't going anywhere... and we had no plans. A week of just chillaxing.

So, why was I sad? I guess it was because I looked at what Vicki did all day on Monday, and it seemed so... nothing. And that made me sad. It also got me thinking.

Who am I to say what someones day of chillaxing should look like? I know what I consider relaxing (actually, I don't know what I would consider relaxing anymore...) would not be the same thing my husband considers relaxing. Joe's relaxing is not the same as Ally's. And Vicki's isn't the same either. Why am I judging what makes her happy and relaxed?

For Joe... playing video games all day is relaxing. For Ally... doing crafts is relaxing. For Daddy, watching home improvement shows is relaxing. And for Vicki... what did she do? She loves to sit in our pink rocking chair by the front picture window and look outside. She could sit there for hours. And she does. She stares at the same page in a cookbook. For hours. She loves to look at my toes. For hours.

Why do I get sad? Maybe because she looks so vacant so much of that time. She doesn't speak. She doesn't look at me. She just stares. Blankly. I never see her smile.

And I think to myself... I want to help her so much. I want to make her smile. I want her to enjoy life. I want her to be engaged and interactive.

Maybe, just maybe, though... I should just let her have her own form of chillaxing. Maybe just one day I shouldn't analyze it. Maybe she finds it peaceful. Maybe she's found joy inside. I hope so. xo

Day 5. Year 5.

I'm going to admit something. I love looking at holiday and family pictures that people post. Every single one of them. I loved seeing all of the Egg Hunt and Easter Bunny pictures and big family photos of everyone sitting around a table full of yummy food. I love hearing the stories that people tell of their family escapades.

I love it all. But, sometimes I get so jealous of it all too. I wish and I envy.

 I know a snapshot is just what it is. It's a snapshot. It's one second of a moment in time.

I know that oh so well... One of the interesting things about social media is that you have a certain amount of control over what people can see. Maybe you show them what you want them to see. That's one reason why I love digital cameras. Out of hundreds of pictures I take... there are a handful of them that I really like. And those are the ones you see. There's that one picture that takes my breathe away... say, Vicki's looking right at the camera and smiling a genuine smile that reaches her eyes. She looks so present. She looks so happy. And that's what you see.

You don't see all of the other ones... the ones where she looks vacant. Where she looks sad. Where she is crying. Where she is sitting on the floor because she won't get up and move. You don't see those. I don't want you to see those.

I try so hard to find the positive and the good in every day. And I try not to dwell on the bad and the difficult.

But sometimes... when I see my facebook feed loaded with smiling, happy children, and lots of busy family get-together s... I shed a tear or two. I know that everyone has struggles. And most people show you what they want you to see. You capture that one second of pure bliss. And then all the kids get grumpy and start yelling at one another. You don't post a picture of the burnt bread you made.

Sorry, I'm not really sure my point tonight with this post. I just know that we shut ourselves off from so much because it's so hard. It's hard enough just getting through a day here at home... to add in different houses with different issues that Vicki has, with the exhaustion that accompanies it all, sometimes it's just easier to hole ourselves up in our house with our little family. And the hour and 20 minutes it took to get Vicki to to walk outside for the backyard egg hunt wasn't witnessed by anyone else but our little family. And the vacant look that was in her eyes when we tried to get her to look at her Easter basket, we only saw that. And the tears. We didn't show that to anyone.

I am grateful. I really am. And I am thankful. And I need to remember to be thankful for that one snapshot, that one moment. And celebrate it. xoxo

Day 4. Year 5.

I will not let crazy life events prevent me from keeping up with this blog this month. I will not let crazy life events prevent me from keeping up with this blog this month. :)

So, before I get way behind again, I will keep this one short and sweet.

Interaction.

Social engagement.

Autism.

Family.

Love.

Have you ever played that word association game?

I thought a lot about these 5 words over the weekend and how they all tie together. It may not be a perfect bow some days... but they are all intertwined. Braided together.

I just wanted to share a few interactions with you.from Saturday. We went on a drive. One of Vicki's favorite things to do. We were backing out of our driveway and I hadn't buckled my seat belt yet. Vicki noticed. "Mom. Seat belt. Mom. Mom. Seat belt." I bucked up and thanked Vicki. She smiled.

We were walking down the street. Vicki has an intense fear of animals right now. She gets so anxious. Sometimes she freezes. Sometimes she screams. Sometimes she tries to bolt.
This time, I could see her squeeze her Daddy's hand tighter as she saw the dog. And then she said, "Joe. Joe. Hand. Joe." And she grabbed hold of her big brother's hand with her other hand. She had her Daddy on one side of her and her big brother snuggled up close by her, protecting her, on the other side. She made it. She felt secure and comforted by her family. And that made me feel so happy for her.

She asked Ally for help when she needed her shoe tied. She said, 'Ally double tie please. Double tie."

I love how Vicki shows her love to everyone in our family. She loves us. She trusts us. She is comforted by us. She feels protected by us. And she protects us as well. And we love her.

Told you. It was short.

But those few words she uttered. They were powerful and speak volumes of her love of her family and her family's love for her. xoxo

Day 3. Year 5.

I never really know what I'm going to write about until I sit down. Sometimes it's just something that happens during the day that gets me thinking.... Today it was hearing "The Gambler" by Kenny Rogers on the radio. Yes, I am going to admit this... The Gambler is one of my all time favorite songs. :) I know every single word of it. And I'm pretty sure that I sound amazing singing it. (Ha! You know how there are just some songs that my you feel like you can really sing? This song is one of those for me.)  I'm not sure what it is about this song that really speaks to me. Maybe it's the fact that when I was growing up a lot of people told my Dad that he looked like Kenny Rogers. Maybe it's because I made a mixed tape when I was young for my Dad to listen to as we were driving up to our camp on the weekends and this song was on it.... I still get shivers on my arms when I really listen to these words. So, just in case you have no idea what I am talking about.... here's a bit of the lyrics:

You've got to know when to hold 'em
Know when to fold 'em
Know when to walk away
And know when to run
You never count your money
When you're sittin' at the table
There'll be time enough for countin'
When the dealin's done

Every gambler knows
That the secret to survivin'
Is knowin' what to throw away
And knowin' what to keep
'Cause every hand's a winner
And every hand's a loser
And the best that you can hope for is to die
in your sleep

I'm not sure what this song has to do with my post tonight. :) Wait. Of course I do. This song is about behavior. And behavior is something I think of all. of. the. time. I am not a behavioral analyst, I don't have a degree in it. Heck, I know that I don't even parent with the basics of behavior in mind sometimes. Someone could analyze every move I make and just shudder. And some probably do. ;)

I talk about Vicki's behavior so much. We have meeting upon meeting upon meeting.We look at behavior plans. We look at the functions of her behaviors. We look for appropriate reinforcers.  We look at the data. Look for the extinction burst. And so on and so forth. I wonder sometimes how many hours per week I spend talking about Vicki's behavior. The numbers, I'm sure, are mind-blowing.

I see behaviors with Vicki one day... and the next week they are gone. Then that same behavior resurfaces again 2 years later. I could go on and on about behaviors... how difficult of a study Vicki is. She's tricky. Tricky Vicki. Some days I feel like there are a zillion functions for a single behavior of hers. She is a brilliant young girl. I never underestimate her.

This is meant to be a very generic post tonight. I don't want to get heavy into behaviors right now... because to be quite honest, this past year has been one of the most challenging in dealing with certain behaviors. I have cried myself to sleep on many occasions. More than I care to admit. It's hard to watch. It's hard to live through. It's just hard.

Sigh... what's my point? Well, as I was listening to the song tonight... it made me think about the battles I pick. And the behaviors I choose to fight day in and day out. I know when to fold 'em. I know when to walk away. And I know when to run.
Don't we do that with all of our kids in general? Maybe I don't fight with my 14 year old wearing shorts when it's 35 degrees outside anymore... Maybe I let my youngest get away with something that I know I should take a stand on... And with Vicki, it's so hard to be 'on' all of the time. When you put a behavior plan into place... it should be followed for every instance of that behavior. I'll be honest. Maybe I'm weak. Maybe I'm just tired. Maybe I just want a break. Maybe I just need to give our family an easy night. Maybe I should have held them, but instead I folded.  

It's funny... today wasn't a particularly challenging behavior day. (Phew). But it was just on my mind for some reason. Every thing Vicki does is on my mind. Pretty much all of the time. I constantly ask myself 'why?' What is she doing that for? Why did she start doing this? How do I help her? What can we do? Some days I worry so much about her just sitting down because I am never sure if I can get her to stand back up again.

Anyway.... Every hand is a winner. And every hand is a loser. The best that I hope for is to get a smile on her face. xoxo