Ornaments

Tonight the elves brought us some ornaments to color and chocolate covered snowmen was for our treat. Zeq ate the head off of his snowman.

Todays adventure was ofcourse pants, 4 failed attempts to tight, to long, not comfy.. and was told just go grab shorts. He wore pants, after school he says see this is why pants are not good, looking down at his feet, yep pants are over his shoes. Hes over pants, I’m over pants everyone is over pants. He changed into shorts and all was well again.

Johnny came here and there with kitty kitty kitty.. he came and went only staying 5-10 mins here and there. Our normal I’d say. Henry came for a few nose stuffy(it wasnt) sore throat and angry. Then moments after he left all was fine.

Zeq was happy it was Friday. We made it through the week. Not pretty but made it. Fridays is the one day a week that it isnt asked what day is today. His body and mind just know I believe. He did ask if Christmas was 2 weeks away.. I said a little further than that. We was not happy with my answer.

Today he brought home an empty speaker box, I ask what it was for. He said he is going to put some collectables in it. Ofcourse he is 🙂 we have more collectables in our home than a store. It makes him happy, whether it is a piece of paper, or a bottle of seaweed. One day he may decide he doesnt want it anymore, I could almost bet that never comes, but you never know it could happen.

Tomorrow is a new day.. there will be an obstacle aready.. his is eating the last piece of his pumpkin roll, this is no regular pumpkin roll. It is his pumpkin roll that sweetie pie makes him. He has been counting the slices everyday. We will figure out snack time when it comes. We tackle the obstacles as they come.

This weekend we will put up our village I told him today I will need his help. He said he would help do all the trees(his favorite.) He was really excited. Tomorrow is a new day, a new page in our book. Until then

As always

Onward and upward

Word searches…

Day 19 our elves brought to us.. word searches.. and we had holiday shaped pretzels. Zeq was overly happy about these word searches.

His day brought nicer personalities Johnny came a few this evening. Dinner wasnt a war zone. Tater tots and fries.. the old potatoes.. this morning didn’t start as smooth. Pants!!! Let me tell you they are overrated by far. Its funny with him because if you know him well you would know this kid rarely puts on a shirt what so ever. He is always “naked belly” as he would say. So you would think it would be a shirt fight everyday. But it is not. It is pants, todays pant dilemma was they went under his shoes. Uggh. Maybe I should have went to school to be a tailor… specialist in pants for autistic kids who hate pants.

But alas I did not go to school for that. Soon as we got home pants went as well. To each their own. I to an extent know how he feels I would much rather stay in shorts.

Either way we made it through the day, pants in all. He was able to do the project at the same time as everyone. He hummed a Christmas song one second, to the next telling me about flying into a helicopter (took me a min to realize it was a game) then went on to how kittens are baby cats, when they get big they are kitties.. but I laughed to myself I wonder when they become cats?

The brain of this kid really does amaze me most days. His personalities intrigue me. He in general humbles me. He has taught me more in his 14 years than I have learned in my 30+ years. We learn together as a family. He teaches me everyday, and maybe one day I will be able to teach someone else. I will be able to tell his story to someone who is in the same place who feels lost.

Everyday is a new day. Tomorrow will come whether we are ready for it. How we deal with each day makes us who we are.

Another day another adventure

As always

Onward and upward

Snow day

Snow day!!!! Yay!!! Or not…

All is usually well with snow days, no school.. well you would think anyways. Today was not that way.

Happy no school, Zeq was very happy. But soon after started the “will there be school tomorrow?” Yes there will. To is there for sure school tomorrow. As of right now yes there is. It over took his day.

It started out bad.. made him french toast.. not enough syrup even though it was swimming in it. Then the bread tasted like…well it tasted like bread?!?! I was unaware that was a bad thing, but apparently it was.

The day continued when is Christmas? I told him. He started crying because he wanted it sooner.. if only I could control time. But somewhere in his mind he believes I can. Unfortunately I can not.

Back to are you sure there school tomorrow.. yep still is. Then he decides since not Christmas yet he wants a new game.. ok he has money saved.. not quite enough.. but within a week he would have enough.. ok so he will wait. Then to I think I’ll just save my money. Ok buddy. To crying should I save my money?!?!?! I’m not sure, if want game we will get the game.. if not we can save.

At this point I know there is no end in sight.. just have to ride the wave out until the storm calms..

Cue elf project. Day 18 felt light up nativity scenes.. and doritos. Well not going how planned. He becomes highly agitated. I tell him go upstairs and when he calms, and other two are done we will work on his. Because I know it is only going to go downhill from here and sometimes you need a break. He goes upstairs and meltdown begins. 1/2 hour later calmer.

So comes down and works on project and asking about school as if the whole day didnt even happen.

The bright side of today, we made it through it. Definitely not graceful by any means. All three worked on their projects (not complete because glue has to dry). Zeq did not hurt himself or myself during meltdown. Personalities came and went without staying extended periods of time. At the end of the day… tomorrow is a new day. So always something to look forward too. Because no day is promised. All days get busy, nothing is as planned. But it’s what you do during that day to better situations that make the day worth something.

Tomorrow will be new adventure (there should be school) so we will do as we always do..

Onward and upward

Glowing beads

Night 17 of elves brought us glow n the dark sand bottles and a glow n dark beads, and whoopys cookies. Zeq picked the beads. It was an extra long string. So he decided after all the beads went on that he was gonna save it until he gets enough beads to fill it up. It will go in his treasure box until then.

Today he wore jeans, he didnt meltdown. But after school complained they were uncomfortable and rushed to put his usual basketball shorts back on. All was well again. Tomorrow is a two hour delay because of snow. They dont know it yet. Because for Zeq it would be well we wont be doing anything anyways so why cant we skip?!?!. That’s a battle we will tackle tomorrow. No point and flaring up anxiety that is not warranted or needed.

Shadowy figure showed up for a little while. Calling out the same signals, talking to the same team as usual. No varying in his commands per the usual. He stayed about 45 mins. He never bothers anyone, Zeq comes back and the afternoon continues. He hasnt been around for a couple weeks. No personalities are ever wanted when they appear but this guy is the easiest and calmest to come. I cant say that I like him. But I dont mind him. I would take him before any of the rest.

Zeqs food is growing slimmer and awkward. He is now onto to eating just bowls of mashed potatoes nothing else with it. As well as plates of tater tots/french fries. Must be potato time of year. We are back to the ever revolving pop tarts. How long will they last this time??!! Who knows. Not me anyways. It’s a guessing game at dinner or breakfast time. Kinda like walking across a mine field. You give him food gingerly in hopes the house doesnt blow up.

Getting closer to Christmas time, everyday ask the same question, what day is it?!?! Followed by I cant wait til Christmas. His favorite holiday. It has always been that way since he was little. The lights, the tree, decorations all of it. When he sees them he lights up. When driving at dark, from the back seat you always hear Christmas lights Christmas lights. Did you see them?!?! Yes I did 🙂

This time of year truly in a sense makes his heart happy, even though on the flip side makes his brain go in 7000 different directions. But it is the small joy you can see on his face when he sees those lights, or even when he gets to pick a tree out for the village. Those joys are what makes all this worth it. All the obstacles he may face in a days time, this time of year he gets joy out of the little things.

The slowing down, to take 20 mins to pick the perfect tree for the village. To be humbled to be able to feel so special to buy that .98 tree.

He humbles me, I too love the lights, tree, and villages. Building our village here at home is something me and him do. Everyone picks a piece and enjoys it. But he takes the time to hang out with me and place each piece in the perfect place, and give off the wall ideas for it. Its something I look forward to every year, and I think somewhere deep down he does too. We will be doing it soon. 🙂

Tomorrow is another page in our journey.

As always

Onward and upward

Cat stocking and shortbread

Tonight the eleven brought little stockings for each kid to make for their kitten. As some shortbread cookies. Zeq really liked the cookies. So win win for us.

Today was back to school. We had to have whole conversations about jogging pants. They are pajamas not school clothes. So now we will be the search for some pants that are short, but not pajamas. Should be fun.. tomorrow will most likely bring the jeans out. Wish us luck. Not looking forward to that. But also may not happen. I have already had conversations with the school. That if he decides to wear shorts in a blizzard. They are all aware of the situation. So we shall see.

His behavior chart was good for today so another win, no matter how big it is, it is huge to us.

He is counting down days to Christmas break already. Which in turn will result in heightened anxiety. John came this afternoon, something about his room is not to John’s liking. I am not sure what it is, and Zeq when it is all said and done has no idea what just happened.

During elf project tonight Johnny made an appearance.. brief and didnt last long. But he was overly happy about the dog, then when given a cookie he had to make sure he smelled it. Then it was back to Zeq who was annoyed the dog had his head on his leg. Hey you win some you lose some. Take the good with the bad.

We made it through the first day back, so that is all that matters. Tomorrow may be different. But we will see when the time comes. No matter what happens at the end of the day we can reflect on something good that happened. For today we are thankful that there was no huge meltdown. We are thankful that the personalities only stayed for a brief time.

Take time to slow down, enjoy the little things life projects, or Christmas talk. Enjoy the minutes or hours you have. Because we all get caught up being busy that we miss all the small things that atleast at our house are huge things.

Tomorrow we will tackle tomorrow..

As for today as always…

Onward and upward

Letters to santa..

Day 15 of elves they brought us a mail box and letters to fill out. Pretzels and marshmallows were the treat.

While writing Santa Zeq said mom you think Santa will know what I want if I forget to write it down. I tell him yes because Santa sees all. He was glad about that incase he forgot anything.

To tell you how quickly things change in our home. After I wrote the blog last night. Zeq leaves and John comes. He is obsessed with cleaning and finding old phones in his room. Coming down stairs every 2 mins worried about phones, cords, tablets. Where they are. So he begins deep cleaning his room. Why?!?! No idea. But he changes out boxes, and moves this and that. Still coming down stairs randomly. Randomly talking and talking fast about things unknown.

I remind him it is late, but to no avail… he continues on.. a hour or so passes and he is still obsessively cleaning. Loudly at that. He says yes!!!! I found it.. I have no idea what he found. Nor does he even remember it today.

So today he room looks like a tornado has hit multiple times. He doesnt know why it is like that. Apparently that’s where John wanted it.

On one visit down the stairs in the kitchen(that was his path each time) we ask him what his name was. He never answered continued on his journey. Later we hear Zeq.. his normal tone and all. He comes down the stairs we ask him his name. Looks at us as if were are dumb and says Zeq why?!?! Then goes about his day.

Nothing triggered this event nor does it ever it just comes and goes. But it changes with no rhythm or reason. Sometimes it last minutes and other times like this one hours. John was on a mission and until it was done there was no stopping. After he left Zeq was tired and fell asleep.

Today he was up and down he was quiet a lot. He became overly anxious, because I had to go to the hospital. He doesnt understand that I was ok. Because to him hospitals are scary places. I reassured him quite a few times that all is ok. It has settled for now.

Tomorrow is back to school so should be interesting to say the least. He knows it is tomorrow, but it doesnt change anything for him. We will deal with what tomorrow brings, tomorrow.

It may be good, may be horrible. Only tomorrow will tell. Until then

As we always do..

Onward and upward

Snow

Even when you dont feel well the show must go on. Things may just be a little slower.

Tonight the elves brought us snow to grow. Zeq ofcourse wanted to keep his for his collection and…… he put it in his fridge so it stays cool. The logic of this kid I tell you. Treat was popcorn and Hershey bells. Zeq had a piece of pumpkin roll. He enjoys the projects like this.

He was in a rare form today. His mood went from not talking at all. To arguing over every little thing. To one point even turning off his game system. Which I can promise you never ever happens, unless it is bed time.

Johnny was to visit quite a few times today.

He got a few sets of minutes which in turn made him or John extremely mad. So it turned into more yelling. But at end of it not even remembering what got him the minutes to start with.

This is normal at our home. Most times he doesnt even remember so then when the personalities leave he is very confused and sad to what’s going on. But we go on.

You see for Zeq he doesnt understand when you are sick or cant move. He doesnt understand what’s happening. So at the end of the day we have to continue on no matter what because he lives this life. There can not be any interruptions. It will throw him completely off and it wont be pretty to say the least. Giving up isnt an option in our home. If we give up he would spiral downward and we would lose all the progress we have made in the past 14 years.

Life will move forward, we will move forward. We will make each day the best we can under all circumstances.

Tomorrow is a new day and something new to look forward too.

As always

Onward and upward

Stockings

Day 13 the elves brought felt stockings project. This one was new and fun. A huge bag of candy for the treat.

The end of break is nearing, which brings up the constant question each day… what day is it??!! I tell him he says yay. It is the new normal banter we have everyday this week. Tomorrow he will stress a little more about it, and Sunday he will become angry. Because that’s how it works. It is the same year after year. We are used to it, it never detours off path. We handle it as it comes.

It not necessarily the unknown this time, but the known. Most days he fears things because he doesnt know about it. Whether it is what it tastes like, what will happen if he does it, what will happen if he doesn’t do it. With all the choices, it never ends nicely. Because choices for Zeq are not a good thing, it makes a good situation bad, it makes a bad situation even worse. He will choose something, then instantly it is like his brain or other personalities have a battle inside his head, then he second and third guesses. Until a meltdown ensues. By that time the choice itself is irrelevant.

Imagine every day living in fear. Fear of unknown, the not knowing. Fear of the known and knowing the outcome and hating that outcome. It takes a toll on Zeq he exhausts himself. Personalities do not like his choose so they make it known, and they in turn exhaust him. Each day is a cycle. How well the cycle turns revolve on what we choose for him.. that’s a tall order because sometimes you just dont know what would be best. Sometimes it works out sometimes we dont have the happy ending. But either way we make it through the day. Exhausted or not. Tomorrow will come and go whether or not we are ready for it.

But will we do as we always do

Onward and upward

Happy Thanksgiving

Happy Thanksgiving from our family to yours. Want to say a big thank you, to everyone who takes time out of their day to read this blog, stop by, and support it.

We had family dinners, and the elves brought us some coloring pages to do. We had pumpkin pie and pumpkin roll as our treat tonight. Was just us and Zeq. The other two went to their grandmas.

Zeq got to give his sweetiepie her applesauce today he was so excited. Highlight of his day. He has been stressing over this applesauce for a week.

His day was his normal. Personality here and there. He sat and watched a movie, he enjoyed it. Was about army so was right up his alley.

Life is what you make of it. This is what we make of our life. We do our best for each day as it comes. Some days are easier than others. But everyday we are grateful for the day. We could dwell on everything that isnt good, or we could look at it as a lesson, something that we needed to learn. Make everyday a little better than the day before.

We hope that everyone had an amazing Thanksgiving with their families. Take the time to slow down and enjoy the time you have.

Tomorrow is a new adventure, and we will see where it takes us.

As always

Onward and upward

We did this thing..

Welp we did it…. Zeq got a haircut!!! Win for us!!

Day 11 elves brought us pirate treasure in blocks to dig out!! Always a good one. Treat was snowballs (cheeseballs) Zeq did not attempt the cheeseballs. One night we will find something that he eats. Maybe. Maybe not. But we will keep trying. Listened to some Christmas songs as well.

Everyone is always excited to do these. We are excited to do them as well. They are just as much fun for us as they are for them.

Today wasnt as quiet. Jeffrey came.. he likes to listen to his music loud and the same song over and over. When ask to turn it down, his reply ok man.. I got you.. uggh Jeffrey you are not my favorite that’s for sure. He is fairly harmless. Johnny came off and on the kitty kitty kitty as he calls angel is now the mommy kitty. No idea why, but hey we roll with it. He was withdrawn some, but not as much as yesterday.

Tomorrow is Thanksgiving.. we have a lot of things to be thankful for. Everyday we are thankful for things. Today we are thankful for haircuts, and no epic meltdowns. Some people think of Thanksgiving is the where you declare your thanks.. we do that everyday. Because everyday to us is a victory in it’s own. Everyday is not promised. Everyday is a new day. For Zeq each day brings its own new challenges, the ups, downs, the fight. Each personality brings it’s on set of problems. We deal with those as they come.

Find something everyday to be thankful for. Find something to smile about. Be thankful for the smallest of things.

Tomorrow is a new day, enjoy your families, eat your delicious dinner and just be thankful. 🙂

As always

Onward and upward