Day 4. Year 6.

Well I did the first 3 days without falling behind in posting. That's something. ;) 

It's been a rough week so far and I'm not really sure why. Maybe it's just trying to get back into a groove post-Easter and post-spring break. Maybe it's just that overwhelmed feeling you get when writing your to-do list is going to take so long that you have to put writing a to-do list on your to-do list. :)  Or maybe it's the fact that we started this week off with a 4 hour IEP meeting. (which will be continued later this month because we had to leave to get Vicki off the bus after school). I can't tell you how many of these we've been to over the years or how many more we will be attending in the upcoming years. If it's a particularly challenging year we meet almost monthly for something - whether it be for an IEP (individualized education program), ESY (extended school year), triennial (where we meet every three years for a re-determination that Vicki is still eligible for special education services) , a BIP (behavior intervention plan), or whatever else is deemed necessary. No matter how many times I've been in these meetings, they never get any easier. I still feel sick to my stomach days leading up to them. And, honestly, I think the reason I am still so exhausted is that it takes a few days for me to rest up after, rest up mentally, emotionally, physically. My husband and I always attend these meetings together. And it's hard to do because he has to take off so much work for Vicki's doctor appointments. But it's important. Vicki needs us to fight for her. 

I think it's rather ironic. How much communicating parents of a child with autism have to do to get services for their child who can't communicate. Sometimes I get so tired of talking. (Gasp!) You wouldn't think so reading these posts.... :) But I do. It's hard. It's hard to find the right balance of everything when you step into the ring. I mean meeting. 

I enter the ring armed with a cup of coffee, a pen and my notebook, oh, and my amazing husband by my side. We start up bouncing around a bit. Warming up. I smile. I crack a joke. I try to make people feel at ease. I tell a personal story about Vicki. I compliment a good written report when I see one. 

Ding- ding- ding. Round 1 over. More discussion. Rounds 2, 3, and 4. And then we all start to sweat a bit. Jabs are thrown. From both sides. Ding-ding- ding. Round 5. Round 6. We pause. We re-group. We go back for more. And then the hard punches start being thrown. I have my Kleenexes ready.  I try not to, but I can see it coming. My voice cracks. I get emotional. And I cry. 

Then more punches. I fire back. I will stand up for my daughter. I will demand that she is armed with what she needs to be successful. Ding-ding-ding. Round 7. Round 8. 

I'm not sure how much more I can take. I know I need to be strong for Vicki. But sometimes I don't even see the punches coming. And I'm not prepared. Sometimes I can't even see straight. I get confused. I'm not sure which way to turn. I don't know who to trust. Ding-ding-ding. Round 9. 

My heart bleeds for my baby girl. I know Vicki better than anyone. I am best equipped to fight this fight for her. But sometimes I feel like I am not strong enough, Like I have lost before I even step into the ring.Ding-ding-ding. Round 10.

Sometimes I don't even know what I am fighting for. I know I am fighting for Vicki. But I don't know what will serve her best. I'm the one who knows Vicki better than anyone and I don't even know what I should be doing. That scares me. And I get so tired. So emotionally drained. So beaten down. Punch after punch. Meeting after meeting. Year after year. 

We had to stop this fight. But we will finish it. And then we will ask for another fight. And then another. Because Vicki needs us. She deserves to win. She will win. 

I want so badly to talk more personally about these meetings. But I won't. I just wanted you to know about the fight we fight every day. I'm so glad you are here to cheer us on. To cheer Vicki on. V for Vicki. V for Victory. 

Don't you want to watch Rocky now? :) 

Day 3. Year 6.

I'm going to write a little earlier tonight. And it's probably not going to make any sense. But this is our life, and sometimes nothing makes sense. I love a good puzzle. I love a good book. But sometimes.... it's just too much for me to process. And right now, this moment, is one of them. Today was filled with exciting highs and heart-wrenching lows.

So, I wrote last night about how we had spring break this past week. And how Vicki hasn't been out of our house (with the exception for our backyard for a few minutes a few times during the week, which, don't get me wrong, was exciting in and of itself because she hasn't been able to go in our backyard but a handful of times this past year.) I think, no, I know, that Vicki misses being out in the world. I know she does. All week she had been asking for trip and hotel and restaurant. But when the time came to see if she would actually be able to follow through with her requests, she couldn't do it. She would freeze and become very anxious. But today she kept asking over and over again to go in the van and go to a restaurant. And, again, she's done this quite frequently over the past year. But then when she would have to stand up to go get into the van, she couldn't. Anyway... you know that when you are highly motivated to do something, the probability that you will complete the task increases, right? That's usually the case, except with whatever is going on inside of Vicki right now. Call it whatever you want. All I know is that her brain and body are not cooperating with each other. And sometimes I can physically see her fighting herself. It's in her body language and in her face. It's so hard to describe unless you see it. And I hope most of you never do. It is heartbreaking to watch. But in the same breath, I want all of you to see it. And I want you to see how it changes. And how it stays the same. And it drive me to the brink. I don't understand any of it. Not one bit. And that is very hard for me to accept. It's not a fluid behavior. It's not tied up neatly in an ABC data form. Here in the antecedent. Here is the behavior. Here is the consequence. This, whatever this is, with Vicki... it doesn't work like that. It's so obvious now that it doesn't fit a mold that the behavior company we work with no longer attempts to figure out how to get Vicki through it. They tried for a few weeks. Stood and watched her not be able to transition for 6-8 hours. Took data.. And then stopped.

Sorry, I can feel myself drifting off from the original intent of this post. It's a very hard decision for us anymore. To try or not to try when Vicki specifically asks to go somewhere. You may think that's harsh. But we have reasons why we don't try. For instance, the more we try and then fail, even if this behavior wasn't serving a clear function, we would end up reinforcing her not completing a task. Because you never know how hard it is going to be to force Vicki into the van. Even when she really, really, really says she wants to go. And if you think about it.... when you go somewhere in your car, you usually have at least 4 different transitions, right? Unless you are strictly going for a drive. You get in the car, you get out of the car when you reach your destination. You do your thing. You get back in your car and then you get out of your car when you return home. Just think about that for a second...  everything we take for granted. I take it for granted. It's easy for me to get in and out of the car. Now maybe when you have a toddler, you don't want to take that toddler into a store... I remember those days... but ultimately, even if your toddler was throwing a temper tantrum, you could technically still pick your child up and take him/her into the store, or wherever you were going. It might not have been the easiest, but if you really had to, you could do it (always different in different situations though, I understand that). But with Vicki now.... I don't take any of those transitions for granted. And no one but my husband is successful at getting her through those transitions. And even when he does, it's usually not pretty. Not pretty at all. We are scared. We don't want to create more anxiety for Vicki. We don't want Vicki to get hurt.. We don't want to get hurt. And we don't want the world to see how we have to live.

So, what usually happens? Lately all 4 of those transitions have been heartbreaking.

But even if you have 1 of those transitions that goes fairly well (like today!!) and you start having hope again... thinking... maybe this is it. Maybe she is turning a corner. Maybe just like that this torture is over for her and for us and for her brother and sister. And then we have the next step in the transition process. And it takes an hour. And you know she wants to. But she can't. She's stuck. So you split up time... just like a lot of parents do with kids... I take Joe and Ally in to eat and play and Daddy stays in the van with Vicki. Trying just about everything he can think of to ease her fears. He sits beside her, he holds her hand, he talks to her, he walks her through the time because she keeps asking to get out at 7:10, no. 7:11. And then when 7:11 comes around, she changes it to 7:14... you see this pattern, right? And then he'll ignore her. And then he'll sit quietly beside her. And then, all of a sudden, she can move. And she tells Daddy where to move to and how to stand and then it's over. She's out of the van. And then she starts walking. And then she stops. And she freezes. And she can't move forward. And then she can. And then she sits down in the restaurant!!!!!!!! Oh my goodness. And then she watches the timer. And then when we ask her what the timer is for, she doesn't respond. And then when there is 2 and a half minutes left on the timer she jumps up and says, Vicki. She wants to. Vicki go to bathroom. And then the fear that I have... what if she gets into the bathroom and I can't get her out? Oh yeah, that's happened before. But we make it. And we all leave. And then we get home and she can't get out of the van again. I wrote most of this while she was still sitting in the van, not being able to move and get out. It's heartbreaking. Finally Daddy had to get her out forcefully. And then I got to start the waiting process of having her pee before bed, not knowing how long she was going to stand naked in the bathroom until she was able to move and sit down.

It's all like a horrible game of childhood freeze tag gone wrong.

I told you this probably wouldn't make any sense.

But that's what it looks like, and that's why sometimes we don't even try. But tonight we did. And we were rewarded with 1 absolutely amazing transition. And we heard her giggle. And we saw her laugh and smile as she sat at Chuck E Cheese and ate a slice of pizza while watching her timer. I should be over the moon. And I am. But it's so hard to  sometimes when you've also seen the fear and anxiety and difficulty. And you know that you have to immediately fight another battle. Unsure of how long it will take you. How long until she sits down to pee so she can go to bed. And then the fear as I am sitting here now... wondering if I will be able to get her out of bed tomorrow morning so she can get on the bus and go back to school after a week off. And then worry that if I can't, then we will have to cancel the IEP meeting that we have tomorrow morning and reschedule it. And know that as soon as I am done writing this post I will print off a draft IEP that was just sent to my email an hour ago by the school. And I have to stay up and review it tonight. Sometimes it seems like just too much. But I know we will never stop trying and fighting for Vicki. Because, damn, that smile is so beautiful. And Vicki deserves every happiness and every smile and every laugh.

Thank you, as always, for listening to my nonsense. You have no idea how much it helps me. xoxo

Day 2. Year 6.

I just want to first thank all of you for your response to my opening post this year. You sure know how to make a girl feel loved and how to renew my spirit and dedication to writing again this month. So, thank you, thank you very much. You will never fully know how much your love and support and kind words mean to me.

I wanted to talk tonight a little more about this past year.

Sometimes I feel very petty about some of the things that I grieve over, things that I am sad about losing. I feel petty about this because I look at all of the pain and suffering in this world, and I think to myself... what gives you the right to feel so sad about ...... and......?  Look at the things that I am complaining about. so insignificant in the grand scheme of things. When I step back and look at it, I feel guilty for not being thankful enough for all of the blessings I have been given in my life.

But then I sit back and think about it. It's all relative. We each have our own set of circumstances. Our own reality. We are shaped by our response to our own experiences. We each have the right to feel however we feel about our own unique set of struggles. With that being said, I thought I would share a few of the experiences that I now grieve over. They may seem silly to you and insignificant to you.You may even think.... how can she be grieving over that? And while the individual things may seem trivial.... I look at it from a more global approach. When someone you love is struggling in so many areas of their lives, when daily functions are difficult, ultimately you look at that person's quality of life. And how it suffers. And that... that is what I grieve over. I grieve for the smiles that no longer touch her lips, and the laughter that no longer resonates in her throat. I grieve for the sparkle that has dulled from her eyes and the spring that is no longer in her step. {Now, it's not that those things are never present anymore, because that would be more than I could bare. I still see them, but they are sparse. Very sparse. And that makes my heart break into millions of little pieces.}

I'm not sure I'm making any sense right now. It's very late, or very early, depending on how you look at it. I couldn't sleep with this crazy wind whipping outside. (Plus my son Joe is on a camping trip for scouts. I will feel much better when he returns home, takes a nice hot shower, and crawls under his own covers in his warm bed.) Anyway.

Things I grieve over. I'm pretty sure I mentioned this one last summer... but I'm going to mention it again. Every year, since the kids were born, we would go to the mall and get pictures taken for their birthdays (because they are all in April and May) and for Christmas. So it was about every 6 months. And yes, I know this is ridiculous. I never said I was rational. :) I would get the kids all dressed up in their finery all the while listening to them complain about their uncomfortable outfits... Just taking a trip to the mall was stressful. In fact, we usually only go to the mall twice a year, yep... to get their pictures taken. We would painfully go through the photo shoots with one of more children having a meltdown. Getting all 3 kids to smile together was a feat not often accomplished. "Don't worry about them all looking at the camera... in fact... hey.... lets get them all looking at the book together. That way we don't have to deal with that." Every 6 months. My husband was always like... why do you torture all of us with this? I don't know. I just started doing it and then I couldn't stop. I didn't buy many pictures. But I always got 1 of each kid, and one of all of them together. I put them each in a cute bonded brown leather photo album. And I will admit... I LOVE looking through these pictures.So do the kids. So much of that mall trip was difficult, but we would always go to the food court and order a slice of that big, greasy pizza (AFTER the pictures, of course!). And then last year, it stopped. We tried to take the kids down (and I did just look back at my posts... I did write about this day...in fact, it was the last post Day 28. Year 5.) Vicki could not get out of the van to walk into the mall. So, it was just Joe and Ally for those pictures. And that day was hard. It was like I now had a visual reminder that Vicki was struggling big time. When she starts disappearing from pictures. I still get choked up writing this. It's like a visual representation of me giving up on her. And yes. Yes, I grieve over that.We didn't even try for the Christmas pictures this year. We didn't even try.

Another thing that I grieve over. And this one is pretty fresh. Easter. And this whole week of spring break. One of the things about Vicki that I'm sure I've talked about before... She loves calendars. She loves holidays. She loves celebrating. Everything. So do I. Each month  (I think) is defined by holidays for Vicki. We decorate. We celebrate. Everything. Even Groundhog day. Vicki still wants to eat groundhog dirt pudding every Feb. 2, because we made it one year. Every year for Easter we would find an egg hunt to go to. I would dress the kids up in their bunny shirts and we would make it a day. Now, it's never spontaneous or easy. But we always gave it everything we had. We always tried to make it work and make it special for all of the kids. We've done some fun egg hunts... from traditional egg hunts roped off in a field, to egg hunts in grocery stores. From egg hunts where they hide real hard boiled eggs (ewww!) to egg hunts at wineries. (Those are my favorite! What's better than enjoying a wine slushy while your kids run through vineyards finding Easter eggs?) And then there was this year. There were no egg hunts. We couldn't get Vicki in the van to go to any. And deep down, I know she wanted to. They all did. Even the 15 year old, who would never admit it. And so we stayed home. Yes. I grieved for that. We didn't go anywhere at all for spring break this year. We've gone to the beach in past years. We've taken day trips. We've always done something to make it special for the kids. And this year... nothing. Vicki hasn't been anywhere since the last day she took the bus to school 9 days ago. And if it wasn't for friends coming over for Ally and Joe and Joe's current scout camp-out, the kids would have done nothing at all for spring break. They did clean their rooms and catch up on homework and moving watching though. ;) And we did make memories here at home.  But I don't think most people realize what a blessing it is to be able to put their kids in the car and set off on an adventure. See where the road takes you. I know I didn't realize it, until we couldn't do it anymore.

I think that's what I grieve over the most. Autism and PANDAs has taken away part of Vicki's and Joey's and Ally's childhood. Granted, children grow up. It's definitely a hard process for me. Letting go. Change. No longer being able to dress my kids up in holiday shirts (ha!)... seeing that they no longer feel the childlike magic in a moment, and I no longer try as hard to make those moments magical. Priorities change as the kids get older. I understand that. But. It wasn't my decision. It wasn't Joey's, or Vicki's or Ally's decision. This damned disorder stripped us of making those decisions for ourselves. Maybe it's better in a way. Forcing me to let go. But I'm mad. I'm not ready. Not yet. And I don't think the kids are either. And that's why I grieve over things that may seem silly. We did not get to make those decisions for ourselves. Circumstances forced our hand to do so. When I look at that bonded brown leather photo books, the pictures just stop. And it's not fair. Ally's should not stop at age 10. Vicki's should not have stopped at age 12.5 (the last pic she got at the mall). And Joe's.... well, maybe his should stop at 15. But I wanted it to go through all of high school. :) Yes, I know. I'm still ridiculous. But when I look at those pictures....I will always know why they stopped. And that. That makes my heart hurt.

Grief comes in all different forms. xoxo

Day 1. Year 6.

Should I? Shouldn't I? Should I? Shouldn't I?

I wrestled with these questions all day today. I don't know why it was so hard to decide. But it was.
Do I have it in me anymore to write? Does anyone really want to read about sadness and fear and exhaustion? Do people see my post and roll their eyes? Oh, here we go again. Another month of whining. Another month of awareness stuff being shoved in my face and junking up my news feed.
I'm sure there are people who do feel that way. I'm one of them some days. But, ultimately, here I sit again. Why? I guess because this is my 'me time'. My time to sort through it all. Make sense of it all. Spit it all out, and (wishful thinking) let it all go. I want so badly for this writing to be like a month long massage. For my brain. To be able to talk through all of the stress and strain and feelings of hopelessness. I hope I can make it through this month, writing.The last few years I haven't been able to. We'll see.

One thing I really want to do this year is open it up more. To you. I want to know what you want to know. I want to know what you are curious about, what you kind of want to ask me but are afraid to ask or think it would be offensive to ask or think it would be silly to ask. So please. Ask me. Send me a message, post a comment. I will try my best to honestly answer anything you want to know.

I decided to reflect a bit to start out this month. Reflect on this past year. I could write pages and pages on my lack of understanding of what is happening with Vicki. And I have. In my head. Over and over again. For those that have been following me at all on facebook and who know me at all.... know that it's been a very hard year. Probably the hardest one yet. When I'm quiet on facebook, you know. I love how you know. I love how you call and text and I love how you love Vicki and me and our whole family.

It's hard to pinpoint when things went really bad. Because usually we have our ups and downs. Behaviors come and go. We have good days and bad days. Just like everyone. But this year... oh man. It's been filled with so much heartache and sadness. The bad days turned into bad weeks, bad weeks into bad months and bad months into a bad year. And they overshadowed the good moments. And that is what makes me the saddest of all. I lost hope. That's so hard for me to write. Me. Vicki's mom. The one who tries to find a triumph in every word, in every action, in every day. I celebrate moments. I celebrate the little things that are the monumental things. That make Vicki who she is. I stopped celebrating. I stopped being hopeful. I just stopped. Because sometimes it's just so damn hard. It is so damn hard to plaster a fake smile on my face and utter.... 'oh Vicki's doing good...' when I would see someone on one of the rare occasions I interacted with people and they would politely ask about Vicki. It's hard to fake it. But it's even harder to not.

So. Here I am. Not faking it. How has Vicki's year been? Please bear with me. (This is not going to be beautiful or eloquent. But it's going to be real.)

It's been a shitty year. A really shitty year. Starting back in April... I'm sure I wrote about it then... When we went back to school after spring break.... The van. Our damn van. All of a sudden Vicki stopped getting out of the van when I would drop her off at school I don't want to rehash it all. It just happened. From getting out of the van independently with me and walking into school... to having 4 people full on put hands on to get her physically out of the van into school. And then just when you think it can't get worse. It did. Everyday. The fear. Wondering... oh, my god... will I be able to get Vicki out of the van after school? Will anyone be able to get her out? Daddy could. But he has to work to pay all of the medical bills that insurance won't cover because most of the specialized doctors we see to try to guide us through these changes in behavior... give us medicine and bills. And then nothing helps. And we had to wait in the van for hours some days until Daddy could get home to get Vicki out of the van. And then we saw more doctors. And they tried different medicine. And some medicine made it worse. So much worse. Remember the self injurious behaviors that I wrote about? That was so scary. And we made the decision to go even more in debt because Daddy had to go overseas for a work meeting. And he was afraid to leave us. Afraid that her self injurious behavior would get worse, Afraid that we would be left sitting in the van all night because Vicki couldn't get out of the van. So we went with him. It was not a vacation. It was survival. And yes. Things got even worse. From only having trouble getting out of the van, to not even being able to get into the van anymore. Fearing that someone would see my husband trying to get Vicki into our van and think we were taking her against her will. I don't wish that kind of fear on anybody. Watching Vicki, our Vicki, our smiling, content Vicki... turn into someone that we didn't know. The fear she has. The anxiety. The utter terror on her face when she is faced with things that she loved to do before. She cries. She doesn't just cry... it's hard to explain... it's a guttural cry that rocks me to the core. She is desperate. She is afraid. And I don't know what I can do to help her. She is fighting something. And I can't see what she is fighting.

But you guys know all of this. I don't know why I am rehashing it. It just continued to get worse. We had meeting after meeting with school and our behavioral company. We were able to get her to school by trying a bus for the first time. It wasn't easy in the beginning, but it worked. Why? Why would a bus work and not our car? Or anybody's vehicle? But then there were days...We were just sailing along. And then we weren't. And it wasn't anything that we could figure out. Days that she wouldn't get off the bus. Days she wouldn't get on the bus. Weeks I couldn't get her out of bed to go to school. And the fear that we live with everyday... Is today a day we won't be able to get her on/off?

 And then the increased urine frequency. 24 times a day. And she would wash her hands so much they got chapped and raw. And then more doctors. But it is a vicious circle. More doctors meant more car rides. And forcing her in the vehicle. In. Out. Doctor. In. Out. It's torture for Vicki. We don't take car rides lightly. We can count on our fingers the amount of times in the past year we have attempted a car ride. Let me say that again. We can count on our fingers how many times we have attempted a car ride (that wasn't for a doctor's appointment). It's tragic. It has affected not only Vicki, but our whole family. We would always go for rides in the car on the weekends. Go on hikes. Go out to restaurants. Vicki loved car rides and being out. And then it's over. It's just over.

It sounds like we make this up sometimes when I describe it. It sounds unbelievable to me. I always think... people must think we are super lazy. We just don't want to. We use Vicki as an excuse. It can't be that bad. It can. It really can. It can be hours and hours. And the fear in Vicki's eyes. The anxiety. I have taken videos that would break your heart. And no one can figure it out. And then more doctors. We go to the GI. Another belly x-ray. Another bowel clean-out. This is not normal. Why is this happening now?  Mirilax. Ever 30 minutes. We do rainbow colored Gatorade to mix it with. These are our weekends. I woke up on my birthday in October and had to figure out how to give Vicki her first enema. And then spend 2 days doing a bowel clean-out. And then having Vicki not be able to go back to school. And then it turned into 2 weeks at home. Then the next time we go to the GI, Same thing. And then I have the same fears... what if I can't get her back to school again? And then, even just last week, we went to see an immunologist. Getting out of the van was so hard for Vicki that as Daddy was getting her out, he fell backwards and landed on the sidewalk. It shook me to the core. Daddy was ok. But oh, my, gosh... what do we do? What do we do when Daddy can no longer get her out of our van?

And the waiting. Waiting is exhausting. I never realized how exhausting. And I think it's bad waiting for her to get out of the van.... And then it started at home. Hesitation more with any and all transitions. From the couch to the table. Waiting. For her to come out for dinner. Waiting for her to take a bite. Waiting for her to go to the bathroom. Waiting for her to get out of bed.And she wants to do it all. We know this. We see this. But she can't.

One of the hardest things right now in our house is bedtime. I will describe it in more detail later if you want, but every night Vicki waits to sit down on the toilet. She stands naked in the bathroom. Sometimes for hours. One night it was 5 hours. Some nights its 30 minutes. Some nights its 2 hours. And Vicki is so obsessed with time now. She will tell us a time when she will do something. The anxiety she has standing and waiting. It's like she wants to sit down but she can't. One night she said 10:22. And when it hit 10:22. She sat down immediately and peed and then went to bed. And the relief on her face was so evident. Some nights that doesn't work.

It's the not knowing how long every thing will take.... Will she be up 5 hours at bedtime tonight? And then we turn around and stress about whether she will be able to get up out of bed or get through her morning routine to get on the bus for school.

I'm all over the place. Sorry. Sitting back and re-reading this... I sound so selfish. It's all about how it has affected me. And it's not about me. It's about Vicki. It's about her quality of life. Her smile. Her happiness. I want it back. I want it back so desperately.

I've learned a lot this year. I feel broken. But I know I'm not. I'm still here. I've found strength in so many places... from my best friends who will sit up with me via chat until 2 in the morning and talk me through Vicki's bathroom cycles so that I know that I am not alone... to people reaching out to help so that Joe and Ally can still have a childhood and be a part of the community and seek comfort in friends. I've learned that asking for help and being vulnerable may suck, but I know I can't do it alone and I am forever grateful that I don't have to.

Eh. That's enough for tonight.I can't write anymore. Gotta save some words for the rest of the month. I love you all.Thank you for being here. xoxo


"

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