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
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