Jeffrey..

Now onto Jeffrey..

Jeffrey is a fun one… not so much.. Jeffrey is late teen, early twenties. He is extremely stubborn. He is a force for sure. He doesnt refer to me mom, mommy, or even mother!! I’m hey man, dude, partner, or simply what’s up.

He is the one who you have to watch when it is medicine time. Either he will simply refuse. Saying its chemicals that go to his brain, to putting them under his tongue to throw away. He has specifically said “Zeq may need this but I dont” he has what we call it as a hippie, surfer mentality. The “ehh” I dont care. Or I’m just not gonna.

He is a hard personality to handle. He gets very angry very fast. When he meltdowns it is of epic proportions. It can be over anything at anytime. Whether it is medicine, food, or just life. He goes into a rage and it lasts sometimes upwards of an hour or more. Usually ending in restraint. Jeffery is not very welcome here.

He comes once or twice a week. We are thankful it isnt all the time like some of the others. We deal with it as it comes. We have told Jeffrey he can leave at anytime when he does come. He usually does the most damage in every sense, physically, property and other. He exhausts both myself and Zeq.

But we do what we do best. We keep on keeping on. We wish things could be easier. But this is our life and we live it not exactly how we want, but how we need.

Like we always say.

Onward and upward!!

The new kid on the block…

So onward… the newest alter/personality to join our family.. he has no name.

To put it easiest.. he is sick. Sick like has the flu sick. Sore throat, emotional, cant do anything sick. Probably the weirdest oddest thing I have ever encountered.. well maybe not.. but needless to say it is up there.

He just came probably a week, week in half ago. He actually came the night he no longer wanted salisbury steak. When he talks it sounds as if his throat is so sore. To the point I looked at him and ask if he was ok and if he wanted to go to dr because it sounded that bad. He said no. Ask him if he wanted some medicine. Again said no. The cough he had, definitely didnt sound like a fake cough but also at same time didnt sound like Zeq coughing. So this alter caught me off guard. Not only was it an odd night for not eating Salisbury steak but now he was getting sick.

But that’s the kicker, when the alter left Zeq didnt have a sore throat, not did he cough anymore. Talked fine, not emotional went about his day. During the time he was here, he sat and cried and cried. Real tears, hitting himself, throwing himself down. Then the sick sounds. Got him in a bath and when he came out, nothing was wrong. Next morning normal Zeq. No sickness. Ok maybe a fluke.. we could only wish.

This alter has came back at some point everyday. He doesnt stay long. Not violent, just hits himself on the knees and cries and cries. We knew something was up because our cat walked by him, and he didnt even acknowledge her, and she is Zeqs favorite by far. He always talks to her no matter what or who he is. But not this guy. We dont know who he is or where or why he came. But we know everytime he comes has cough, sore throat and just cries. He only stays for 10 mins or so. Then goes and Zeqs back to his normal self.

Definitely new, and on the odder side. But hey what’s life if it’s not interesting. Just set him a dinner plate at the table along with the others.

Onward and upward as always.

John..

Now onto John. John has been with us for a bit. Not as long as the last two. He is a very well spoken man. But as well has a very mono tone to him. Guessing late 30s by his mannerisms. He uses large terminology. He calls me mother, not mom, or mommy like Zeq. He is very OCD. Everything has a proper place in his world and he can not stand to have anything on him. John wears a shirt at all times. Where as Zeq takes his off at the first chance he gets.

John is very specfic picky person. He has to wash his hands with only dawn soap. It has to be the original blue soap. He becomes easily angered when things a not “just right” in his world. He is extremely indecisive. He has caused many of the meltdowns that have involved any choice of any sort. He does acknowledge Zeq. He will often say Zequal is this, Why Zequal?!?! He only calls him Zequal.

John is not a scary man at all until the meltdown comes. Then he becomes violent. Inflicting pain on himself, my self, or destroying some of Zeqs favorite things. Things Zeq would never think to break like throw is ps controller, or break his legos. John doesnt care about any of them. He has said he just needs things to be in order. He cant live with the chaotic mess of toys. He cant be bothered with simple things. Everything has a purpose and place in John’s mind.

In Zequals world every day does have a place, but not the places you would think. Specfic spots for army cars compared to police cars. It looks like a jumbled mess to you and I but to Zeq it is perfect. We believe it drives John insane, which in turn drives Zeq insane if that makes any sense. As long as John can have some sort of order, cleanliness he can come and go without a meltdown. But if there is something out of place(to him) or something as small as not having blue dawn a raging meltdown comes. It is not pretty and it exhausts Zeq and myself throughly.

I have looked at Zeq and ask John to leave. He tells me no and that he will stay as long as he needs. I assume to get things in order. We dont like when John comes. He is one that can stay away forever.

On another note…. Zeq brought home a monitor and more remotes home today. He sure was excited.

Onward and upward

Shadow man…

The next personality or alter that visits… this one has no name. He never speaks to anyone who is present. He does speak just not to anyone you can see.

He is our shadow guy.. we believe he is a soldier of some sort. He is in the army. When he talks to whomever he sees he calls them private. He will do this even if he is right beside you or if you are in the same room. As if you aren’t even there. He will look in your direction but it’s as if your invisible. When looking at you he is giving a command or showing someone where something is.

This alter is no harm at all. Does not hit, scream, destroy anything.

He is very noticable. When he comes, he always goes outside of Zeqs room. Always has a gun and always is around a corner, crouched down eyeing something in his scoop sort of hidden like. Well as hidden as you can be in a hallway. He has a lower voice, very mature, as if he is really in the army. He always holds up his walkie talkie(nothing is there) and talks to whoever is on the other end. Which we assume is his private. He makes noises of the incoming helicopters. Uses commands as if he was really there. He speaks sternly and waits for an answer. Assuming he gets on because then he gives his commands and continues on with his mission.

He uses technical words from the army. He will state where he is with coordinates,what he is supposed to do, where is to go(23 clicks over the south ridge) He will tell you different types of weapons, ammo, materials, planes, jets. All by their specific name. I have looked some of these up over time. They really are what he is describing.

Growing up we all assumed it was pretend play. Just a game to Zeq. As he has gotten older, we became well aware that it is in fact not pretend play after all.

I am not saying Zequal wouldnt know these things that he is saying. But the reality of him knowing all the terminology of the army is a bit of a stretch. The same exact scenario plays out everytime this personality comes. It’s not as if everytime he has a gun he is playing war with himself. But it is exactly the same words, sequences all of it. His partner always gets hurt, and he tells him he needs to hang on until the chopper comes. He wont leave his man behind. Then he cover fires and stays safe until. Always communicating with whomever is on the other end of the walkie. Asking for the back up, even telling whoever’s hurt the helicopter is almost here.. then makes the helicopter noise. Sometimes if you dont see it you look around because it does sound like it.

This alter has been around the longest. As far back as I can remember. He comes and goes. Sometimes a few times a week, sometimes we dont see him for a few weeks. Theres no interaction with this one. The other two kids can walk through the hallway right and front of him and he does not flinch or take focus away from whatever he is doing.

Zeq wont hear you call his name. It just stops when it does. He can be laying on the ground making his noises, or talking to whoever on the walkie talkie, then all the sudden stand up go in his room and play his game. Talking in his normal voice, as if nothing just happened. Sometimes it is 20 mins, sometimes upward of an hour. We know with this alter that it just has to run its course.

He doesnt and has never hurt anyone. He has came out when we have been in stores. Out of all of them he is the easiest to be ok with. No name, just a soldier during their job, then like a light switch or a door opening and shutting, Zeq is back to his normal self.

I cant imagine what it is like to have this happen. But does Zeq even know when they come and go? Do they just come when they want to? Is it something he sees or hears that trigger them. We have no idea. We do know Zeq knows about some of them. They are “the secret friends” he is not supposed to talk about. I have no idea why is not supposed to. That’s all he has ever said. He has told his dr he is not allowed to talk about them. When she ask why he has always stated he is not allowed. We have ask why and he gives us the same answer.

So we may never know.

Our home is always interesting to say the least.

As always

Onward and upward

Here comes Johnny…

I figured I’d take the time to dive a little deeper into each of Zequals personalities..aka alters.

I figure we could start with Johnny. See Johnny is probably the one that I dont mind as much as some of the others. I dont have a clue where his name came from. Zeqs favorite names to name his things are John, so I assume it is something to do with that. But also he has an alter who’s name is John, so could be a descendant from him as well.

Now Johnny is toddler give or take between 2 and 3 years of age. He has a clumsy walk to him, he tends to rock when he is sitting, he is semi potty trained but does have accidents on occasion. He is a very over stimulated kid, easily distracted and often hard to redirect. He is very stubborn.

We always know when Johnny comes, he is very easy to spot and hear. He squeals, jumps up and down when something new is brought in the house or at anytime he sees the cat or dog. Johnny isnt violent at all. He does have meltdowns. But they are meltdowns you would see any toddler have when they are told no throwing himself on the floor crying.

We would imagine Johnny is going through his terrible twos/threes. He has a certain kind of foods he likes, and he only uses his hands to eat, and by the end of dinner he has it all over himself. Johnny doesnt or has never referred to Zeq. He has said his name is Johnny, the most usual response he gives is “me hungry” “me want tea”

It is easy to regain control when Johnny comes. If you get down on Zeqs level and call his name. After a few times(sometimes have to be louder) Zeq will usually look at you and ask what. He will be back to himself, his voice, his normal stature, everything. He will go about his day as nothing was even going on. We dont know if best to let the personalities run their course, or take control. Sometimes there is no controlling them no matter what the circumstances are.

With Johnny, he comes very often, few times a day staying 10/15 mins here and there. He is harmless. He just likes shiny things. He doesnt bother anyone (except the cat) he doesnt break things or anything. He is the one who is most tolerated.

You know it’s taken a lot years to be able be tolerant and understand what is happening. No I’m not perfect by any means not will I ever be. But i will keep looking for the answers to my own questions. You know..the.. what happens if one of these alters stay? Will the strongest personality become the most dominant? Those answers I dont know. But I will always look for the answers. I will always be Zeqs mom no matter what. I will always try my best. Some ask what it is like. Well everyone should watch split. No it’s not exactly the same. But everytime the door opens you wonder who it will be. No one ever said life would be perfect. At the end of the day my family has a lot of stories to tell, and Johnny’s story is one of them.

As always onward and upward

Not all things change…

In life the only thing that is constant is change..

Kids as they grow, their taste and interest change. Sometimes so quickly.. somethings you will buy 100s of dollars of lightning mcqueen’s, then two days later to find it is not the “cool” thing. Yes it is frustrating, but also liberating because your kid is growing up and developing who they are.

Well you see… Zeq is not that.. yes he has grown.. and things have changed here and there, the small stuff. But mainly it is all the same. He has used the same blanket to sleep with for years. He has a pillow that he was given at birth, that literally has had to go everywhere with him. He plays his video games, collects his cars, eats same foods, only drinks tea, when he goes outside he picks flowers, feathers, plays with his millions guns, does puzzles, 95% percent of his life is the same as it has always been. Not that, that is a bad thing. It’s very predictable excluding the changes in foods.

It is helpful around holidays, because for whatever reasoning in his head he believes he can only ask for 1 thing for his birthday, from Santa etc. So it is fairly easy to fill in all of the blanks. He has forever loved electrical things(cords, fan, heaters) He once ask Santa for a box fan, he was thrilled to be able to ask him.

He has no care in the world on what kind of clothes he wears, or shoes only thing is they have specfic things, no tags, straps, and socks must be over his ankles. He wouldnt care if they were pink or green.

He doesnt care what kind of party he has for his birthday. He could care less what kind of bookbag he carries to school. Life for Zeq is pretty cut and dry.

With the other two kids it is inevitable that they will ask for this or that this week, and then we buy for the following week and they dont like it. Or will want to only shower for months, then one day it’s only baths for now on.

Change is inevitable and always ongoing. We change everything every week. But Zequal is just happy to be the same all the time. He doesnt need to rearrange his room, or a fancy new comforter set. He would much rather live the exact way everything is, and wear his Ghostbusters hoodie for the 3rd year in a row.

Some may say things because he wears the same hoodie everyday(it is washed often) or may think it is weird that he has the same blanket for the last 8 years(also washed often)

But why does it matter… it doesnt to us, and definitely does not to him. He is just happy living his life the way he is. That is a ok to us..

Added some pictures through his years, his flowers, his games, I could take pictures everyday and they would be similar. Only difference is his looks.

As always

Onward and upward

Just keep swimming…

Just like Dory says.. just keep swimming, just keep swimming.. you know what I say to Dory?!?! I dont know how to swim.

So Johnny(toddler) was here for dinner this evening.. he ate hotdogs.. which I am actually thankful for. It is something other than homeade spaghetti. Johnny is harmless. He squeals when he sees the cat. Pretty much like having a toddler going through terrible twos… touches everything over and over. Walks stumbly… on his tip toes. But overall personality that I dont mind as much (if I had to pick one it would be him.) But we got through dinner so that is what matters.

Johnny stayed for about an hour. Zeq came back and ask me what’s for dinner.. I said you already ate buddy… he said oh and went upstairs.. he has been quiet ever sense. Not talking to anyone now. 😦 that’s how our days go one minute up, the next down, then start over again.

The seasons changing do not help the situations either. So today’s rise in personalities could be because of cooler weather. Notoriously end of October until January are our worst months. We think it because change of weather(pants) breaks in school, stimulation of Santa coming. We dont really know for sure though. We definitely do not look forward to it.

On another note. Yesterday Zeq brought home his “haul” internet cords, upon cords and even more cords. Then he was like mom I got these remotes. So he shows me.. not the remote I thought of… they are like clickers for projectors.. he was excited about it. So he said a few remotes, well the real truth is… he brought home 15 of them. He is thrilled about these. He has a pile of stuff. As he plans to get more. He told me he maj bring home a monitor…. not sure for what… but we will see come home Monday.

All I know is he was so excited to tell me about them, and that alone makes it worth it.

Going along with blog yesterday’s blog, I saw this picture I figured I would share.. on how others view disabled.

As always, onward and upward!!!

When you think of disabled….

What do you think of when you here the word disabled? One of my first thoughts has nothing to do with people, adults, or children.. my first thought when hear it.. is actually like hearing disabled vehicle on the road. Use caution. So disabled vehicle.. that’s what dispatchers, police, fireman call a broke down vehicle.

So by labeling our children with disabled. Does that mean we are calling them broken? There is a medical definition of disabled..and then there is a in general definition. Both meaning the same with different wording. Not having the capacity (mechanical or mentally)

So basically they are saying they are inoperable, or henderences… well I disagree.. Zeq is not broken. Nor does he have a capacity problem. The problem I believe is the labeling that is given. Yes he has a disability, but that by no means, says he is broken. Yes he learns differently from you and I, but that does not mean he is stupid. The only thing broken is that someone is allowed to label someone that way. Why do they have to be disabled… why cant they just be autistic?!?!

Zeq may not have the ability to learn a specific way(by definition of a school) But instead of force feeding him books and the politically correct way.. why not figure out a way to teach so that everyone can learn? Because for some autistic when they learn something, the first time they learn it is the right and only way to them. So you need to be precise the first time. Because that first time is their only time.

By giving kids or adults the label of disabled, it is taking away from who and what they really are. Because by giving them a label it is kinda like blacklisting them for the rest of their life. It’s like autistic child going out for school sport….you hear oh sorry he is disabled they are a liability. Oh you want to use an after school program?!?! No sorry we aren’t trained for disabled kids..?!?! Like really? I wasnt trained either… so maybe I should have said hey can I get a different kid?!?! No!!! Labels break down a persons value.

Zeq learns in his own way, speaks in his own way, he is his own person. But first impressions by a stranger, somethings wrong with that boy, or that boy needs a good whipping.. like who are anyone to judge my kid. Just like me.. just because I never match my clothes people think I’m lazy, I wear shorts all year round so I must be weird, I look a certain way so I must be “unapproachable” but the truth is I am none of those. The things that a stranger sees or hear when they see Zeq are not who he is. He is a kid first and foremost but he happens to have a disability so no one wants to see past that.. they wont look past a word to get to know what kind of kid he really is.

Some of the best books have the worst covers. Sometimes you have to take a chance. Sometimes you need to give “disabled” people the benefit of the doubt instead of judging them off of a label.

Sidebar… later I will write and his “haul” today

As always through life…

Onward and upward

Dining dilemmas….

Let’s recap for a minute shall we… let’s see in the last two weeks our food in our household well as far as Zeq is concerned has dramatically changed. We no longer eat the following: Salisbury steak, ravioli, spaghetti os,mac n cheese, chicken nuggets/popcorn chicken, or donuts. His dining habits as of today are: Reese puff cereal(breakfast) pepperoni and cheese sandwich(lunch) pumpkin cookies(snack) which leads to the dilemma… what the heck am I going to feed this kid for dinner. Cant give him a choice because that…well that doesnt work. Cant pick between anything..because… well theres nothing to choose from. The only thing left on his list of foods is homemade spaghetti!!! That’s it. So I can imagine that is what I’ll be making every night until one of two things happen… 1) he stops eating it, 2)he adds another food to his rotation.. I’d say the first will likely happen first the way things seem to be rolling.

Somedays days it is harder than others. These past few days with food have been rough. It’s easily said probably worst we have had to deal with. He has never “lost” so many foods without replacing it. When we lose donuts we have cereal, when we lose mac n cheese we have potatoes. It’s really just a never ending rotation of around 5-7 foods. But now it is concerning mainly because they havent been replaced.

So what happens exactly if spaghetti makes an appearance and then leaves as quickly?!?! I honest to God have no idea. I wanna say hey yea we got this, everything will be ok. But I cant honestly sit here and tell all of you that. We have never reached this level, this is a bridge we have never crossed. It is scary. Because what if he says yep not eating..or it is meltdown after meltdown all evening because he is hungry and or exhausted.

This is a foreign country to us. We are treading lightly as we go. Zeq isnt the kind of kid I can say oh hey we are having this for dinner, he is the kinda kid you suit up in your kevlar and lightly, slowly say hey here’s dinner and hope for the best.

He doesnt seemed phased by it. Unnerved or anything. So not sure if it is Zeq making all the decisions or not. It is throwing us all for a loop. But either way we and he will push forward. Because we can sit and wait for the explosion to happen, or we can grab an umbrella and go on about our day. Definitely something new. Definitely doesnt help our “special case” label.. but hey be an interesting journey added on top to say the least… as always…

Onward and upward