It is what it is.

I couldn't think of anything better than that to describe our day away from home.

My husband's brother and his family live near the Indiana/Ohio border. My sister in law and I had planned since last year to set up a day for us to visit and to do a Polar Express Train adventure with their four boys and our two girls. Authentic vintage steam engine train, waiters handing out hot chocolate, a conductor punching the golden ticket and of course a visit with Santa along with the souvenir silver bell. Sounds wonderful doesn't it?

For us to do this trip it was a 4.5 hour trip from our home to theirs. That actually wasn't bad kid wise. Avery didn't really start to melt down from being trapped in the car seat for so long until about a hour out from their house. By this time I was getting uncomfortable as well for sitting so long.

The day progressed and the kids played with their cousins. Avery tried to swallow something that looked like a bingo chip, then she gave Jessie the Cowgirl a swirly in the toilet when nobody was looking. She wasn't in her own element so things were off to begin with. Then factor in no nap. THEN factor in that she passed out in the truck as soon as we left to go to dinner. THEN factor in that after only a 40 minute nap that she was really, really enjoying we had to wake her up to go into a very crowded restaurant it results in a complete an utter meltdown of epic proportions. I ran out to the truck to get another sippy cup of her milk because the $6 Amy's gluten/casein free pizza we made for her and brought with us was not that enticing to her. As I was rushing back in I could hear her screaming. :( My husband brought her outside to me because she was inconsolable and people were staring.

People were staring. I knew that when I walked  out of the restaurant and all the older patrons kept looking at us. I didn't really care if they were staring. I didn't get a chance to calm her down. To give her what she really wanted.  I just took her and said, "Fine we'll eat in the car."  So as I sat in the car crying, (which coincidentally she stopped crying) waiting for my husband to come out with our food I started to contemplate the rest of the night. I knew it was not going to include Avery seeing Santa on the train. If my husband couldn't deal with the stares of his old town folk then he wouldn't be able to deal with her on a train if she was inconsolable there. I also knew in my heart that it would be cruel to put her on the train and not know if she would enjoy it with lot's of strangers and bright lights. Then of course if she was in total meltdown mode on the train than we would have been those asshole parents that people snicker about without knowing our own reality.

I stayed with Avery in our truck watching Toy Story 1 & 2 on the IPad while the rest of the family went on the train. I could hear the lady over the loudspeaker talking about boarding the train. I could hear the chug chug chug of the train as it pulled out of the station. From my own point of view the train on the outside looked beautiful. As I sat in the truck with Avery I cried and cried. This will be the first of many things we have to walk away from because of Autism. I thought how unfair it was to her that she was missing out on this experience and probably many more like it because of Autism. How unfair it was to Paige as well that her and her little sissy weren't going to be sharing some of the same memories. Paige doesn't understand just yet that Avery is different. She knows she doesn't have her words but being only four years old she won't fully feel the impact for a few years.


My oldest Paige got to enjoy it with her Dada and her cousins and though I tossed him the camera on his way out of the truck and told him to take lot's of pictures I didn't get many. He even finally admitted he sucks ass at taking pictures. I can show you the pictures of the ceiling  in the depot, or the pictures of Uncle Matt with his eye's closed (which I learned is an inside joke between my husband and his brother) but I would rather show you the pictures of some really cute little nephews and my little girl.

Trying to get 5 kids to stand still and look at the camera is insane I think.

I think the nephew on the end is trying to eat that candy cane.

 

Santa and Paige

 *for the price of the ticket, umm Santa should have had a real ass beard and not looked like he was 40. LOL

She loved it, she loved her little silver bell. My husband and her also bought Avery her own silver bell ornament for our tree. Maybe when she's older she'll understand what happened on this trip to see Santa and maybe she won't ever understand it. It was clear to me though. It is our new reality. We will have to cancel on things at the last minute if Avery is having a bad day. We'll have to pass up invites or certain activities because we won't know how Avery will be. We'll have to deal with the stares from people who won't know why our kid is having a melt down over waiting or whatever is pissing her off that day. 

Instead of me getting to say FUCK YOU AUTISM (which I want to do at the top of my lungs sometimes.)

I'll just say It is what it is for now.

Good days and Bad days

Some days with our youngest with Autism are very good. She's in a good mood, she's happily playing. Her sister isn't annoying the crap out of her. She's dancing around with music. She's basically a normal 2.5 year old minus any talking.

Then there are the days where she just wakes up mad at the world. It's a whiny cry from the start of the day. The day progresses into lot's of tantrums and her tantrums aren't just stomping her feet. Her tantrums are full on throw herself on the floor, bang her head on the floor, flip her feet up and down to stomp while she's on the floor. Then there's the hitting of herself on the head. Add into it the refusing to take a nap when it's obvious that she needs one and then doesn't fall asleep to later in the day (thanks daylight savings light change for this last week of completely screwed up sleep patterns.) Followed by the refusing to eat any food. So meal times are a complete bitch. Since being on a gluten free/casein free diet we thought she was getting better when it came to her behavior.

This Saturday it was just bad. Lot's of screaming, unhappiness, tantrums and hitting her head.

 She wore her weighted vest at times and that seemed to help a little. I did a lot of squeezing hugs with her to try to help and mostly she tried to squirm away from me. It was a very frustrating day. I retraced what she ate to see if anything could have set her off and I couldn't remember if there could be something that would. Since going gf/cf I also think she's started to loose weight because she's just not eating like she used to. Her best meal is breakfast, then maybe lunch and dinner is a crap shoot.

Since every Autistic child is different I can't just pick up one book of how to fix things. Which is the most frustrating. We were advised to do the Direct Floor Time Therapy for her. Which at a glance it looks like it's child led playing (without frustrating them) and challenging them (again without frustrating them). The first set of DVD's we have from DFT are let's just say dry and boring. The next DVD and book that was recommended was More than Words which is set up better but there is a lot to cover. The book is bigger than any biology book I had in high school or college and the characters in the book for demonstration look like Caillou the cartoon that whiny ass kid.

Sunday was a better day with her, less tantrums and more wearing of her vest. Which I'm still confused as to how much time she is suppose to be wearing this thing since if they are in it a lot they can become desensitized to the weight that is used to calm them down. Almost damned if you do and damned if you don't.

Then came Monday. We started out with speech therapy then immediately follow it with her parent's day out program she goes to. I never know how that is going to go. She has her good days and bad and yesterday was good. In fact very good because she even pretend played along side other kids and did art. The rest of the day she was in a good mood, she took a nap ( I think * my Dad watched her while I was at PT) but she was still in a good mood when I got her out of her crib and she danced along with Princess and the Frog and she ate dinner. A good day in our house.

I obviously wish for more good days than bad. My husband says we won't know what triggers her bad days until she moves on to something else that will set her off. A ray of hope he is, isn't he? He means well and is very supportive and also right. I know it will be a million different things that can come up on her list that will set her off. I just want that list now.