Epiphany

Well not so much an epiphany, maybe food for thought… Somewhat literally.

During a meeting this past week we were talking about Zeq, and his foods as well as his personalities.

Yes just because I haven’t wrote about them lately doesn’t mean that they have decided to leave or even frequent less. Because they are here, often. New ones who have yet to be forthcoming with what they would like to be called.

I described one of the new personalities as a sophisticated coffee drinker.. no name he came and stayed a few months and just like that he went away. He shows up on occasion but doesn’t stay long.

Which brings me to this post, and my epiphany…

So while talking about Zeqs foods throughout the years it has always been described as odd, special case, random.

But maybe it isn’t as random as we all think. What if there are more personalities than we think? What if it is always Zeq to a point?!(He almost always loves tea and spaghetti…99% of the time anyways) but what if personalities are here more often than even I know….

Hear me out… So last year around this time we had a new personality come he was the college guy, he came and the hot chocolate started… Then few months went by and hot chocolate went away… Well now it is back, and at school he was talking around the time of the iep about different college things.. and he decided he wanted to be manufacturer… Does Zeq know what that means?!?! Nope we have talked about it and he looked at me with deer in headlights look.

Next.. Zeq no longer eats candy… Of any sort… At all… Our infamous toddler Johnny has only been here a few time a month at best. He is the one who eats the most candy.

Jeffrey our super laid back hippie/stoner loves all things stoner food wise… Doritos, Cheetos, you name it. Well at random times this past week, its been dude this and dude that along with the sudden urge to eat bags and bags of blue Doritos.. so I buy a new bag and tell Zeq I got them he said ok mom I don’t eat eat Doritos. Oh ok I thought you did.

Maybe I am on to something, maybe there is a semi seasonal pattern to some of the personalities. Probably not but we shall see. I am going to track the different personalities to the sudden changes in his food. Will it do anything I doubt it. But it could be a fun theory to check. So that what I shall do.

Tomorrow will be here soon, and it happens to be Zeq favorite it day. Make the best out of everyday. Not because I say so, but because you want to.

We will do as we always do

Onward and upward

More stuff

So remember last year when Zeq was in his last year of middle school, all comfortable with everyone….. and every teacher gave him stuff.. computers, laptops, projectors, lunchables I mean everything really except for the kitchen sink?!?!?!

So going into this year it was kinda a breath of fresh air.. you know high school new school, new teachers, no stuff?!?!

Well… Nope.. so other day he comes out excited. Get home and he shows me.

His words… A fancy laptop bag .. (it is nice.) As well as in a “hidden” pocket theres a charger… Not just any charger one that has interchangeable tips. It only came with one. But we have been looking online for the rest of them because there are over 50. But the teachers are looking for them as well. 🥺

We are gonna need a bigger house for all his treasures. If it makes his days easier than so be it.

He also bought another mug from the store at school. He took it to his sweetie pies so he can have his very own mug there for his hot chocolate. Which we still have at exactly 9 pm. No more brownies we are onto sugar cookies. For this week anyways. Next week it make chance. He needs 3 more mugs which he is saving for. 1 for Angela, 1 for sweetie pie, and 1 for pap pap. He wants to buy them all at once. So he doesn’t have to pick who the mugs go to he can just have them for everyone on the same day.

Life is what you make of it. What did you make of yours today?.. we made the best of what we had, and tomorrow we will do the same.

We will do as we always do

Onward and upward

IEPs and me…

Yep you guessed it, it’s that time of year. The first IEP of the year. High school IEP… I feel like it was a first date, kinda nervous never having done a high school IEP thus far in my life.

Can we take note of the fact yet again high school(silently crying in the corner, me not him)

Back to it. So get the notice of the upcoming IEP.. ok I got this for a week pumping myself up, because I got this. I have worked too hard for 10 years of ieps to be told something different because he is in high school.

So you know I have to talk myself up a little. Get there taken into a giant room, mind you the bell rang and what seems like the entire state of West Virginia in the hallway. It’s to say the least a little intimidating.

But sit down go over everything, that I want, what zeq wants talking and talking. They look at me and agree to every single thing without hesitation. They even add more things I didn’t think of. What?!?! I was surprised to say the least.

I will say he finally has an aide. She will make sure he gets to classes, lunch, picked up. He has all the essentials we have been fighting tooth and nail just given to us.

High school is much much easier. It is also very nice to know they care so much about their students. That they know how to spell his name and what his favorite things are because they have read his file and not just flipped through it.

So that wasn’t bad at all. Quite frankly it was a relief.

Tomorrow will come and tomorrow will go. But as for today we know that his high school years are taken care of. So that is a weight off of our shoulders.

Until tomorrow we will do as always do

Onward and upward

Brushing teeth

Those are two words that rarely happen when mentioning Zequal. Brushing and teeth. Why?!? Because he doesn’t… Ever… Until this school year.

Why doesn’t he because you know he doesn’t have cavity’s so why does he need to brush them.. touche Zeq touche.

So what changed?!?! Did I bribe him.. nope.. did I hold him down and brush them…again nope.. did I pay him a handsome reward… absolutely not.

What did I do?!…

Well a few days before I had my spine surgery I wanted to be able to help out even though I couldn’t. So I took a dry erase board and made a simple list. Picture is attached.

It has worked like a charm. He has not missed a single day of brushing his teeth. He ask every morning for me to make his toothbrush. Does he do a perfect job, heck no… But what he does do is try. That means more than anything.

It goes to show you how important list, routines, pictures are to Zeq. All I did was make a list for everyone, not just him. I only made the list because I wanted to help when I knew I couldn’t. Guess what he has some pretty clean teeth now.

Will it last?!?!? That I couldn’t tell you. Maybe be gone tomorrow.. may stick around as long as the dry erase board is there. But I’ll take what I can get. I can tell you I know it’s because of the board because he refuses to brush them on the weekends.

Like I said we will take what we get and be thankful and grateful for it.

At the end of the day that’s what it is about. Finding something everyday to appreciate. Even if it seems to be the smallest things. Because the smallest things can mean the world to someone.

Tomorrow will come and tomorrow will go just as today did. Make today great and tomorrow even better. What do you have to lose?!?!

We will..

Until tomorrow as always

Onward and upward

Heart of gold

A common trend when people talk about people with disabilities is to talk about the things they can’t do.

Can’t tie shoes, focus, spell, read etc etc..

What people don’t understand is they can do alot of things. They are some of the smartest people you will ever meet. They are some of the most passionate people you will ever know.

This brings me to my blog post. So Friday at school in his math class they had a competition. I’m not sure exactly what it was or how to do it. He told me twice but each time talked really fast. All I know is it involved math, chocolate chips, and a score of 235 points…those were Zeqs points. He had won!. He won $10 of school money, to spend at the school store.

Walking in from school he had two bags and a huge smile on his face. He hands me a bag and I unwrap it is a coffee mug, it was 2.00 at the store the other bag had the exact same mug and it was 2.00. Excitedly he tells me one is mine and one is his. He was upset because he wanted to buy 4 but only had 2(he needs one for his sweetie pie, and for Angela) he said there is always next time. He also proceeds to tell me the rest of the store money went to pens, pencils and notebooks. He has pleased with his purchases.

Later in the afternoon he wants to have hot chocolate in his new cup, I say ok and make it for him. He ask if I will use mine, I said I would in the morning. He said good cause he wanted to use his at the same time with me. It made me smile big.

No one ever wants to see that side of a disability, they only want to focus on the parts that are broken. These people will one day change the world. They just need someone to help them do it.

The little things in life. You know Zeq wasn’t excited that he won the assignment, he was excited with what he was able to get for other people.

I will say my coffee tasted just a little better in my new coffee cup.

Everyday is a new day, make tomorrow the best possible. Take time and enjoy one little thing because tomorrow will be gone and you may miss your chance.

Until then as always

Onward and upward

College aspirations

I know thinking about college already… Yea he is in high school and about to turn 15. 15 wow.. seems like forever ago really.

College is not going to be an option for Zeq, he hates every aspect of school. Possible maybe a trade school that does a couple classes a week maybe.. but that may be pushing it a bit.

What this blog is really about is I have been thinking for awhile maybe start a scholarship fund in Zeqs name. To be given out when he graduates in 4 years. Just because college isn’t Zeqs thing doesn’t mean it isn’t for someone else who is like Zeq.

Someone who doesn’t get perfect grades, who didn’t start on the varsity team, someone who suffers to fit in, someone who wasn’t in debate, or head of a club. Someone who may have multiple personalities, or eminent explosive disorder. Someone like Zeq.

I am still looking into how to start it, seems fairly simple.

This blog has always had one focus, to educate, to teach someone even if just one person. To tell Zeqs story. What better way to spread the word of awareness than to have a scholarship in his name. For someone who loves to learn but may just need a little help to get there.

We will see where it goes, and will keep you updated.

Tomorrow will come and tomorrow will go just like everyday that has past. The thing is taking advantage of the days as you have them. Enjoy the warm weather, the cool evenings, the littlest of things like that cup of hot chocolate.

Until then as always

Onward and upward

Broadcast, brownies, hot chocolate

If one thing in life is certain(in our house anyways) is routine. Tried and true routine.

Want to know one of my most ask questions day in and day out?!?!

Mom if I start a broadcast will you watch? Yep I will. There is an app called mixer.. it is where gamers broadcast themselves playing a game. He does it everyday and if you want to watch him let me know I’ll give you his user name. Not many watch him. I do everyday, and if I happen to log off and to do something within seconds I hear why did you stop watching, you will watch again soon right. It is a nice way since I am bound downstairs now.

Another thing that has became routine… Hot chocolate… Every night he comes down and says I want hot chocolate tonight… Just the same as the last time it came to be.. but difference this time we have added brownies with powdered sugar(thanks sweetiepie 😬)

He reminds me every night at same time that’s what he wants.. I’m sure it will change sooner than later, then he will have to remind me of something different.

But that’s the reality of life consistency is key. That’s zeqs truth. He will always ask if I wanna watch his broadcast and he will remind me 20 times that he wants hot chocolate and guess what that is ok.

We take life for granted sometimes, we get too busy, life is to hard to enjoy the simplicity of things like hot chocolate. Maybe we all should have a cup tonight.

Tomorrow will come and go, just the same as hot chocolate and brownies will eventually leave. So make the most of your day.

Until tomorrow as always

Onward and upward

School time blues

School has never been on Zeqs fun things to do list. He tolerates it to some degree.

This year is no different, except for being bigger, new school with more people. We are hopeful that high school will be somewhat easier. You know high school kids aren’t worried about picking on each other, they are more worried about football games, and prom. So we shall see.

So far he has managed to get lost… A lot.. have his schedule changed… A lot… Lost his watch then found it.. lost his water bottle then found it. He has an alumni/teacher walk with him, he isnt fond of it especially at lunch time but he hasn’t been picked on so far so the little victories will take.

No he isn’t going to join any clubs, but that’s ok. He isn’t going to try school lunch that’s ok too. As long as he makes it through the day we will take it as a win.

Everyday is a new day, and we will always take the small victories for sure. Because we aren’t promised that everyday will even be an ok day.

Tomorrow will be here before we know it, we will face any obstacles that there might be the way we always do. Our way.

Until then and as always

Onward and upward

Oddities of food

Zeq has never been consistent with foods..ever really.

So to say this summer we have had some oddities is to say the least. The first and most significant I would say was for around a month he stopped drinking tea?!?! Yes completely didn’t even ask for it nothing. What did he drink in this time you ask… Coffee… Nothing but coffee!! With original coffeemate creamer. Day in and day out pots upon pots of coffee. This last around a month or so. Then one morning I had made a pot of coffee as I had for a month straight and he looked at me as if I had lost my mind and proceeded to get a cup of tea.

Throughout the summer things came and went per the usual at our house. He started eating brown cinnamon sugar poptarts, curly fries, pepperoni cheese sandwiches. He stopped eating strawberry poptarts, chicken nuggets, ad he now he doesn’t think he likes the restaurant Golden Coral.

Today he drinks tea, eats donut holes for breakfast, pepperoni cheese sandwiches for lunch, dinner is spaghetti and he recently took up drinking hot chocolate every night again.

Tomorrow it could change again, or maybe next week. Who knows. We take it as it comes. Like we always do.

Tomorrow is another day and will be here before we know it.

We will do as we always do..

Until then

Onward and upward

Zoo trip

One of our adventures this past summer was a zoo trip. Not the big gigantic zoo in Pittsburgh, but one local. Hovatters.

We told Zeq the night before we were going to go to the Zoo, he was super excited to say the least. The next morning went for breakfast at IHOP… Yep he got a plate of bacon, a plate of onion rings, and 1 pancake covered in whipped cream and chocolate chips. Interesting combo non the less.. but he eats every bite of it. Breakfast gone off to the zoo. We go in and ofcourse we want to feed as many animals as possible. Buy our food and on our way.

Zeq seemed to be very excited. Every animal we came to he ask what food they ate and would put a few pieces down for them. Except… The birds so they gave us sticks with seeds on them… So go in and hold the stick out and birds come down. Zeq wanted to do this… You sure buddy?!?!! Yep and we went in.. as fast as we went in, he wanted out and out now. It was real bad. But we got out in one piece and went on to the giraffe. He held his carrot up and the giraffe got it so he was good again. Onto the favorite part of all their day…. The gift shoppe…

Each were allowed to pick one item. Zeq ofcourse very carefully picked his favorite animal of the day… Can you guess…. The giraffe?!?! Nope I thought so too.. but it was a wolfe… Wolfe it is. He was very pleased with his choice. Wolfey is his name and he has joined the other stuffed animals in his room.

All in all a good day. Not to hot… Not to cold. Ate breakfast so no one got hungry. Not a huge zoo so no one got overly tired.

With very thought-out preparation we can do what anyone else can do. We may have a meltdown between here and there, we may have 50 of them. But we get it done our way. We can’t just live our life in safety of our home, we have to go out into the world to get a wolfe stuffed animal once in a while.

We may not do things like everyone else.. but we do them our way. We laugh we smile heck we cry.

But tomorrow we may do all three we may not.. we shall see…

As always

Onward and upward