Tiny Salutations

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Sunday, January 17, 2016

Christmas Part 2: Our Slightly Different Christmas

Christmas morning
Christmas was a little hard on us this year to be honest. In the end, it turned out fine, but challenged us to grow and think in ways we hadn't before. And it was... different. Sometimes different feels bad, sometimes it feels good, and sometimes, you're just not sure. I think I am the latter.

It was a perfect storm of illness, autism, and homesickness.

The greatest challenge was probably L's autism. You may or may not know this, and since autism is different in everyone, this could be uncommon for all I know, but autism- at least in L- is not the same all the time. Yes, there are some things that are always more difficult and others easier, but then it tends to be worse all around at times and better at others. What I mean is that sometimes it is so not under control. Something at some point sets it off, and then it's just code red all the time, and nothing in your toolbox really helps enough. We were in full on code red at the beginning of December. I think I mentioned this in my last "Health Update". The entire month of December was hard. I felt bad for his therapists, particularly his physical therapist, because he was so far gone that he was very aggressive, and they likely had some scratches and bruises to take home. I felt bad for me, because during a meltdown we had to be physically separated since one blow to the abdomen could potentially kill me by rupturing my giant self-attacking spleen, which meant we were apart often and I could not be part of what makes him feel better. I felt bad for my husband, because he was definitely being overworked in the parenting sector. I felt bad for family, because if they couldn't meet our demands for sensory input, we had to turn them down for Christmas celebrating together. Mostly, I felt bad for our son, L, though, because you could see that everything about life is just so painful and he just couldn't keep it in. He tried hard to keep his aggression to himself. He would try his hardest to hold it in until we got to our house. He developed repetitive behaviors that he did so often that he developed blistering skin from them, and even turned his aggression toward himself as he had done as a small toddler. His respiratory status was a bit worse, and that always contributes to autism overload as well in our little guy.

On the days I felt well enough, we read The Grinch, watched both film versions, and did Grinch activities a lot, since that was what occupied his mind during our more sane, quiet moments. We tried to use every tool in our toolbox to help him succeed, with a hope that he will remember Christmas fondly, as many kids do, instead of one filled with sensory overload and anxiety. Our Christmas was much quieter and home bound than they have ever been in the past. I think that a lot of family were upset with us for opting out of Christmas celebrations, but even without those we struggled through the holidays. Autism makes any change, especially the sensory assault that is modern American Christmas, very difficult- difficult for the exhausted and frustrated parents and difficult for the frustrated and pained child.

So about those days that I felt well enough. I know I sound like a broken record, but I am always on a downhill slope when it comes to my immune system and its incessant belief that I am my own worst enemy. I now have six autoimmune diseases. I am finding that most of my doctors have never met anyone with that many autoimmune diseases, and a good many of those doctors are at the University hospital, the best in the region. It has just become so complicated.

So, during Christmas, like usual, I was sick. I was in terrible pain, such much so that I would get in these cycles of vomiting over and over just from pain. These days I usually would have to tell myself over and over to just get through the next ten minutes, then tell myself the same for the next ten. My pain management doctors tell me that I am very sick and very complicated and I likely just have to be in a lot of pain for the rest of my life. Their goal is to have me functional 50% of the time, and while I think that stinks, I get it. I also lost a lot more mobility and functionality. Obviously, being in a wheelchair, I have limited mobility in my lower extremities. Now, I have lost a lot of the mobility in my upper extremities, as well. I have had trouble with my hands for quite a while now, but the rest of my arms have given out. I can't do a whole lot with my arms now. I can't dress myself, shower myself, propel myself in my wheelchair.... When your world gets smaller and smaller from your own body's unwillingness, there is so much complexity to the thoughts and emotions that I don't think I've even slogged through them much. I've sort of numbed some of that just for survival. For now.

These stresses- debilitating and deteriorating illness, pain, sensory overload, and autism overload that things are too different- have all found us homesick. I miss our friends, our church, our "places", our trees everywhere, the friendliness, the inclusion, the lack of commercialism as far as the eye can see, the openness, the co-op, the farmer's market, the community, the "uncrowdedness", the mountains touching the beaches. I miss home when I feel like there is no place for me here. It has been a challenge for our whole family.

I had some better days in between though. Days that I could participate and enjoy Christmas with my family. It's not all bad. It is different. We were able to enjoy some Christmas traditions and make some new ones. We did a lot of Grinch activities, including cut-out masks and ornaments. We read Christmas books a ton (I'll put a list of our Christmas books at the end of this article). We went to a local tree farm to get our tree this year. We made handmade Christmas presents for friends and family. We made good vegan food at home. We had some family over in small groups. Finally, we attempted one family get together, later in January.

We made Operation Christmas Child shoeboxes, which went to one little girl and one older girl in Peru. In our shoeboxes, we always pack one toy, a couple books or learning tools, and mostly things to keep warm, clean, and healthy. We normally choose to send them to girls, since in many developing countries girls are not treated as well as boys. We normally send one to a little girl, because the mortality rate among children under the age of five is absolutely appalling, and in countries where little girls are considered 'undesirable' that rate is often even higher. So this year, we sent a box to a little girl to help her survive and one to an older girl to help her thrive.

Between L being sick, and me being sick, we did not make it to see Santa- although when out to desperately find cold weather coats for L and I, Santa did walk by and wave to L, whose mind was thoroughly blown. 'What?! Santa?! Why?!'.

We went to Zoolights at Point Defiance Zoo. This was a tradition that my husband and I used to do before having L- each year we would go see everything and get a picture under the pink tree. Since every year after having L, his lungs were not up it and it was a bit of a drive, we stopped for two years. We were glad to share this tradition with L again. You would think that Zoolights would be the worst idea for a sensory overload, and in some ways it is, but we had a great time. We went on a lightly rainy weekday, and we went early, during the regular zoo day, before they turned on thelights and music. I'm not sure we ran into any other people during the day. We had the zoo to ourselves and visited all of the animals ahead of time. That way, we would see everything before the lights came on, in case an immediate meltdown happened. It was a good idea, since L was calm the whole time until a little bit after the lights came on, as hypothesized. So we got to see all of the zoo for a long while and all of the lights for a short while. It still ended in a full blown meltdown, but it was still great.

So here are the many, many pictures from our Christmas....

Cut-out Grinch mask 
Cut-out Grinch ornaments (this one is Mama's coloring here...)
Assembling the Operation Christmas Child shoeboxes
Christmas tree farm
Off to find a tree
Christmas trees
L has found one he likes
 L was very exited about the Christmas tree farm. He loves trees- a lot. He was however, pretty upset about cutting it down. Our family loves The Lorax so this mixed message was understandably difficult. We explained that if we plant a new one in its place and only do it once a year it might be okay. I'm not sure he bought it, and honestly, I don't know if I did either.
L is a tree kisser
Struggling with sensory overload while making playdough- a present for his cousin
Many children with autism feel a need for pressure in a part of their body- for L that part is his face and head. Most weighted or compression gear is in the form of a shirt, vest, or leggings, so we have not yet found a good solution to help him aside from pressing on him with our hands. He is constantly pleading us to touch his face.
Around the holidays, using his nebulizer started to become a struggle. It was no longer fun, and we had to fight him to get it on his face. Then, he got a little more sick, which means more nebulizer time. It became a good couple hours a day. So, in an effort to make it easier on everyone, I put an old mask on his pig friend, Wilbur. Since Christmas, he has moved on to using an inhaler with a spacer, since they could not get a strong enough medication to use in his nebulizer in an effort to get him breathing a little better.

The making of a gingerbread man- apparently he needed a candy breathing mask, glasses, and bow tie
Zoolights....
Peacock feathers
Peacock face and a little "anemone"

Family statue
Penguin
Walrus
L loved watching the walruses from underwater



The arctic fox is a family favorite to see at this zoo

Frog
Between the regular zoo hours and the Zoolights hours, they asked us to stay at the cafe. There was not an especially large crowd, but it was too loud for L. So we went to the outdoor seating and shared fries- it was freezing outside so we were the only ones sitting outside.  Then, they started the music for Zoolights, which caused L to put his hands over his ears again. The music plus the noise of the crowd that started a little later was what likely caused the all out meltdown at the end. It was still great, though, since we had come early and still got to see everything before meltdown status.

Looking over the map
The view of Zoolights from the top
Moon jellies
Moon jellies
Looking at the shark tank
Christmas Morning....


L asked Santa for books this year- particularly a book about ice and one about dragons. Well, he delivered on the one about dragons, but apparently he couldn't find one about ice in his workshop. L left his letter and some vegan fudge for Santa.
Opening presents and his stocking

He was very excited about his books
Opening presents with Dad
Christmas with family....
Opening presents with Nonnie
"Helping" his cousin open presents
L was very, very excited to give everyone their presents from us. He was so proud to have made some of them. I think he may have been more excited to give presents than to receive them!
Opening presents with Pappy
Pappy & Grammy's Christmas tree and playing Sequence

Pappy
Trying to master driving RC Darth Vader 
L's cousin playing with the playdough he made her
L's cousin and her Mama playing with the playdough L made
She made a little playdough Cinderella- pretty accurate I thought!
Playing with playdough- this quietly occupied them for quite a while!

So even though the holidays were rough for us- struggles with autism being the most difficult, adding in illness- we still had plenty of good times together!

As promised, here is a list of the Christmas books we read at our house:
The Grinch Who Stole Christmas
Twas the Night Before Christmas
The Polar Express
The First Christmas
Where is Christmas Jesse Bear?
A Wish to be a Christmas Tree
The Nutcracker
The Legend of Rudolph the Red-Nosed Reindeer
The Littlest Elf
Gift of the Night Fury (A How to Train Your Dragon book)
The Story of Jesus (Little Golden Book)
The Complete Illustrated Children's Bible

We usually read some Christmas chapter book stories around Christmas too. We always read some of the Christmas American Girl books. Each American Girl historical character has six stories (or at least it used to be arranged that way, and is as such in our collection). Generally, out of the six stories, each of them has one Christmas story. Some other good read alouds include A Christmas Carol and Dear America: Christmas After All.

And a few others about snow, if you live where you get a White Christmas:
Snow (A Cat-in-the-Hat beginner book)
The Cat in the Hat Comes Back
The Snowy Day
White Snow, Bright Snow