Beary!!!

So on tonight’s episode.. we meet Beary…aka..giant teddy bear.. also know as Zeqs best friend.

This giant teddy bear came about last year. We had stopped at a dollar general for some reason I really cant remember why. But walk in looked around.. and we hear Zequal squeal.. yep he met Beary for the first time that day. He wanted him so bad. I said to him he is 30.00. You can save up your allowance and we can come back. He was sad, he wanted to bring him home.

The whole store trip he stood and talked to this bear, telling him all about his room, about his games, just about life I believe. When getting ready to leave, Zeq says mom he needs to come to our house because he is hurt. I said why is he hurt. Here Beary has a cut on his arm(about an inch rip). So he needs to come home with us.

I explained to him a few more times that when he has enough we can come a get him. We make him a promise to stop every few days to make sure he is ok. He reluctantly agrees and we head home. Every few days when we would go past we would stop and he would stand and talk to this teddy bear, and cry the whole way home.

It was close to his birthday so with his birthday money he counted his money and had me count it. With great news he had enough. Mom let’s go let’s go. In the car we go.(praying in my head please let this bear be there). Make it to the store and there he is. On that day Beary became apart of our family. He is absolutely his best friend. He talks to him. They play video games together. He has his own pillow and blanket as well. They share the same bday now. When bringing him home. He had to wear a seatbelt just the same as all of us.. per zeq.

This story came up today.. because after school we had stopped at a store and he got a package of boats. There were 9 packs total. We said he could get a pack and maybe tomorrow we could stop back. He was sad. All evening he has asked if we could stop tomorrow after school to get more boats. I said buddy why do you need so many. He said so he can have d-day.. ok not sure what we are doing but alright. D-Day is and a million boats.

It’s amazing how something seemly so small to most can change a persons life. Wether its boats or giant bears. Some take advantage of the little things. Zeq saw a best friend in that giant bear. He didnt see a torn arm like others did and left him there. He bandaged him up and he is perfect now. Beary came in with his “broken” arm and got all fixed up and he is now apart of our family.

Little things that bring such joy into his life is priceless.

I attached pictures of them for everyone to see the relationship they have.

Bullies..

Everyday someone is bullied whether it be because they are short, long hair, short hair, clothes they wear.. the list could go on and on.

Zeqs had his fair share of being bullied. As we have started this school we have been incident free thus far, and in hopes that it stays that way. But previous years we have not been so lucky.

Remember when I told you he broke his finger and didnt say a word about it.. well yep a boy on playground first pushed him and then tripped him. Said if he told anyone it would be worse. So he didn’t. All because he wore velcro shoes. All over shoes!?!?! Like what kind of world do we live in?

Not all bullying results in physical harm. Since being in middle south we are on our third year of his hoodies being stolen. I’m not talking about one..or even two.. I’m talking in upwards of 20+.. like if you need hoodies man I will buy some extra. But dont take someone’s because you think it would be cool to upset them.

Or how about let’s pick on the kid who can’t write.. he can physically write.. but you can not read it. No it’s not because he goes to fast or doesnt try. Believe me when have done therapies, a special education teacher even said.. I have kids who dont want, or refuse to try tell us.. no he really cant. He can write his name, and if you try really hard you can make out some of the words. But you tell him to tell you what it says, and he can word by word and point to them. So maybe he sees it just fine.

Kids will be kids they say. Of course they will. They will pick they will fight. No problem with that one. But dont do it intentionally to someone who doesn’t understand.

Then you think it’s the worst when kids bully another kid..?!?! Oh it gets worse.

You worst nightmare.. a teacher bullies your child.. yep a teacher. I know what your thinking no way no how.. oh it happened. He was in fifth grade.. doing math test.. they took away his multiplication chart(in his iep to use) didnt read the questions(also in iep). So he doesnt get the test done.. ok.. we will work on it. Off to lunch he goes.. nope walks to sit down.. teacher looks at him says nope not today go sit at this table your doing your test… excuse me?!?! So I front of lunch room, he sits with another child who also has pretty much same iep… has to take a test. Not verbally or with use of a chart. But does it. Goes to erase one he had another answer for and his test is taken away. Then lunch is over and goes about his day. So when picking up from school was approached secretly by teacher, not one but 3 teachers who quickly tell me to call them on personal phone.. I did.. they tell me what happens.. because he won’t probably tell me. I was informed to call school and call an emergency iep. When I called to schedule the personal who schedules said she thanked God I called. We had our meeting, jaws dropped. This teacher believed she could do this because the reality is who would believe a disabled child over a trained provider.. well I would believe my child!!! I am his voice. She began talking at this meeting, I quickly stopped her and said it is my turn to talk. Principal and all the other members as well as said teacher apologized to us and our family. I looked at her and told her we aren’t the ones you should be apologizing too.

Fast forward a year. First year of middle school is hard enough, then you are given a teacher who makes it worse. One particular day at lunch time they can choose to do some homework or have extra help after they eat. So Zequal had a missing assignment and was told to come to stallion time during lunch. Ok he goes to lunch and eats.. no problem. Well I guess he took too long eating and as she said wasted her time.. so she gives him weeks lunch detention.. and makes him call me.. I get on phone. He tells me and ask if he is going to be in trouble at home.. I ask why he didnt go..he said mom I was eating. I said ok. Told him not to worry about it.

But that’s the reality! That’s Zequals reality. The reality of bullies is they believe no one will ever believe a disabled child because they are simply disabled! But bullies could learn a lot from people like Zequal because at the end of the day all the stuff you do to him. He still doesnt hate them. He doesnt plan his revenge . He doesnt go to school next day and punch them or be mean to them. He goes to school the next day the same way as the previous day. He doesnt say a word, because he has no words he doesnt understand.

That is why I am now and will forever be.. his voice. As well as the voice to all those who dont have one. Disabled kids are no different. They are not weird, they are not dumb. They ARE some of the funniest, polite,most passionate,creative, smart people you will ever meet in your life!! People in the world can learn tremendous amounts from them if they would just take a few minutes to listen to them.

So when you send your kid to school or when you go to school to teach. Remember even Einstein was a little shy and awkward at times.

Personalities….

So this one is a little different.. not the happiest. Because who ever actually wants to face problems head on?!?!

First being said federal state whatevers.. can not diagnose a adolescent with schizophrenia or disassociate identity disorder. It wont happen no matter how many people have been present for the identities. There are many people in our lives.. teachers, specialists, people who are on his mental health team. Have witnessed, documented and even written letters about it. Does it mean it doesnt exists. No.. but it is easy to give a diagnosis.. but if it is the wrong one you have to prove that beyond shadow of a doubt..they are not what they are.. if makes any sense.. having the words on piece of paper doesn’t make a difference in the least bit. His medicine plan would be the same.. the home life would be the same, therapy would he same difference only would be a therapist may know where to start rather than guessing, and trying 5000 different approaches. Because he hates therapy everytime.

Now the nitty gritty of the personalities in our life..and our home… you can distinguish the personalities by body language, voice pitch, his verbal responses. You can see them happen before your eyes.

The longest one who’s been around. No name.. kinda shadowy figure to say the least.. he is an older gentleman. He is a soldier to be specific. He has his gun. He calls out orders. Waits for responses. Uses language and code words that most people wouldn’t understand. I say shadowy figure because it is what it he stands in shadows or behind corners. A few have questioned oh no zeqs just playing. No no he is not. At first I was like yea he is. But you can try your hardest to acknowledge or see you but he doesnt know your in the same room. It’s as if he can’t break command or he has his partners back. He will walk right past you or into you without knowledge. When the switch flips and he is gone. Zeq stands looks at you like your an alien and talks just like he would and goes back to his bedroom to play his video game.

Brings us to the second longest personality.. the toddler.. his name is Johnny. He comes and visits quite often. Few times a day. You know when Johnny is there. Squealing, bouncy, flapping, clumsy, extremely happy or overly sad, repeating words little boy. Will come clumsily running down the the stairs “kitty kitty kitty kitty over and over. Until you have to say stop. Or when food is too cold or hot sitting down in middle of floor hitting his upper legs, tears streaming down his face. To saying Johnny wants apples.. ok Johnny but zeq does not. Johnny is the easiest to spot.. and to get redirected. If you can get eye level and say Zequals name a few times while he is looking usually works the quickest. He causes no harm. He is innocent.

Those two are the most visited in our home everyday they come and usually bother no one.

The next few are distinct in their own and you always know which ones are there… I want everyone to know they are named, not by us always that is the name zequal will say who is there or will refer to himself as.

John not a new guy been around for bit. He is 30ish.. clean guy.. very well spoken.. and very OCD walks with his head down, mono tone, rubs his hands as if something is on them. One instance he came and was eating. Got something on his hands.. goes to bathroom wash his hands (sidebar zeq never washes his hands in the bathroom always in the kitchen sink with dawn dish liquid) he is mumbling walking out of bathroom he says mother this is unthinkable there is nothing to dry my hands off with. Walks through the livingroom (we were having a meeting with members of his mental health team) and walks right into us.. doesnt stop goes into the kitchen gets towel and back to his bedroom. Few minutes later mumbling again goes back to bathroom and washes again. We all watch no one says anything. 20 mins go by and you hear Zeqs voice talking to someone on his game. As if nothing happened.

Onward…and upward..

Next is a teenage/20 year old boy who is called Jeffery. His appearance is tall(your thinking how can zeq be any taller) shoulders back appearing taller than he really is. He is cocky, stubborn.. and doesn’t call me mom mommy or mother.. I’m simply known as hey man… how do I know this is not just zeq as a teenager. Well you see. One evening when it was medicine time I yelled for zeq… nothing 20 mins later he comes down..”what man” I say medicine time.. then I proceed to be told that zeq may need this medicine but I do not.. it is nothing but chemicals going straight to my brain…what?! Ok but zeq needs medicine. On another occasion same person legitimately says to he hold on.. turns around talks to someone(no ones there) waits for an answer and turns around to me and says no.. we aren’t taking it??!!. Who’s we and yes yea you are… enough Jeffery time to go home.

On to Jonathan.. middle aged personality..grumpy indecisive ocd aggitated.. john you see only uses foaming hand soap to wash his hands because he can not be bothered with any other kinds. Zeq can be ask to do something he would enjoy..be excited.. then this damn john comes.. doesnt want to go screaming.. wants to go crying.. meltdown ensures… we dont go.. it has been heard many times sometimes hours later..john say..Zeq you are so stupid… why John?!?!

Not last but last for now.. because those are the main.. we have a handful more.. but they havent been around to write a profile..

So last but not least… one who has no name as of yet.. only traits.. his traits are unconsoulable, angry, mean. He doesnt have a name.. he is relatively new.. few months now.. going somewhere zeq absolutely loves would live there if could.. his sweetie pies(his grandmas) we leave he is good excited. His tea bottle begins to sweat.. this guy comes and let me tell you it was a battle..the whole trip all the way and outside of the car to restraint. He was angry his bottle was wet. Began beating head first feet off of the window of car. Let me out.. he starts sweating and turns to blackout rage.. pulling at his hair and clothes.. because of it. At some point his mouth began bleeding so that set it off even more, begins spitting blood and screaming. Punching himself in the head.. all this while restraining as much as I can in passenger side. He tries to rip his clothes off and seatbelt off. Finally get to where we are going out of car it is still happening. Get him restrained and finally it is ok.. afterwards he goes in plays his phone as if nothing had even transpired. Whew.. we dont like this new guy!!!

You see there are more identities to talk about and new ones coming.. so we can save some for another day. Some are harmless..some not so much.

But imagine going thru day to day in and out of a reality.. or doing something you have no idea you did. It’s deja vu all day long really is the only thing I could compare it too.

Not one person out there would ask for that kind of life..

Throw away or not?! 8/27/18

That’s a good question in our home. For Zequal the answer is always not. This kid would keep everything and I am not exaggerating one bit. If it wasn’t for the often purge or boxes, hotwheels packaging he would have them all.

Little fact other than a few cars and games and his guns he never opens anything…!! I mean anything. When he opens his gifts from birthday, Easter, Christmas 90% of the stuff stays in the packaging. Under his bed right now is probably 20 unopened lego sets. Yep he ask santa for them. But hes not ready to play with them yet.

When he was younger he would unwrap one present and be done. If I wouldn’t have unwrapped his gifts they would still be that way today.

He is the collector of all collectors. I don’t mean the normal knick knack.. I mean here are a few of his favs…

4 years ago went to the beach.. he found a piece of seaweed… put it in a bottle with ocean water.. yep still has that bottle proudly displayed. And knows where it is at all times. Or how about we went to a 50th birthday party you know the little confetti pieces that say 50. Yep sure do have a baggy full of them. He has a box full of little golden coins… I would say upward of 150 coins. Not to mean when he buys a hotwheel, he buys the exact same one in multiples of 5. Why?!?! I have no idea, his reasoning you never know when you will need an extra camouflage jeep. Or you know 7 of the same stuffed animal bunny, all with different names. Or maybe you when he broke his finger and got cast..yep he still has it. Or all those burnt out Christmas lights, you never know one day they may work again. For whatever reason he may have he will buy the same thing over and over. I’m ok with it. Atleast is something he likes, and maybe somewhere in his head he knows he already likes the look,feel of it so he wont be disappointed.

If it was up to him. He would keep everything possible. Because it is his and he doesnt understand why it needs to go away. So monthly or so while he is occupied I sit and open all the 15 million hotwheel jeeps and put them in the car box. “Car” box not the tank box, or not the army box but the car box. I open the 32 helicopters all the same ones mind you, and put them with the aircrafts. I take all the papers out of the game boxes and put them in one of his many “treasure” boxes…this one happens to be an old wooden cigar box that he loves. In the authentic army ammo box has to have tanks.

Everything is where he places it. If it is moved to clean or vaccum ut throws him off. Then comes the have you seen my..?!?! Followed by where is my…?!?!

If he could he would save everything paper cardboard and glass because he has this thing for recycling. But wants to save it up for very long time then take it all at once. He doesnt understand that we should put it out once a week. Because to him it makes more sense to have a car full then take it, because you know it’s less trips. I mean he has a point in his own way.

It’s just who he is. If it is up to him hes not going to throw that piece of string away because he can hook it to his helicopter and pull up an injured soldier. Hey he has a point.. no man left behind. We are working on throwing away the actual trash. Such as wrappers, old paper etc.. it is a process. But we will slowly get there.

So when you see a string laying on ground or when a string of Christmas lights that dont work anymore.. your trash may light up the next persons life.

Pain.. sickness.. 8/26/18

Pain.. sickness…
Kinda sounds like the beginning of some wedding vows. Nope just our life. Some interesting facts..

Sickness…

Sure we have the normal kids go to school come home with runny nose, fever, sore throat. Sure we do with our other 2 kids. But not with Zequal. Never does he get sick.. I’m meaning ever. When he was a baby he had a really bad stomach flu once.. and the year of h1n1 yep he got it. Had to be quarantined. But that is it. No fevers. No anything. Now days of he sneezes we are like oh no what’s happening. But never turns in to anything. He does have allergies that are controlled. He has asthma as well not often that flares up though. He has chronic migraines. But as far as the school germs or the everyday colds. We dont experience them often.

Pain… so I have touched on his pain tolerance here and there throughout the blogs. He has a ridiculous pain tolerance. I have seen this boy fall down a flight of steps end over end.. stand up and walk away. Jaw to the floor, panicked is he ok.. yep he sure is. I have been witness to him coming home from school his hand swollen. Ask what happened. Someone tripped him. Does it hurt buddy?!?! No.. ok give some ibuprofen and watch it. Then after the weekend ok, no something is wrong. Drs we go… xray.. yep broken 3 spots. Wth!!! Does it not hurt?!? No apparently not now just pissed because he has to wear a cast. I have seen him RIP teeth out of his mouth, pick his skin until it bleeds.

Last year was at school he slid down a ramp. (He tells us about it a week later) he says mom my elbow hurts. Not swollen but a little red. Make dr appointment.. exam…xray… sure enough broken funny bone.. really zeq?!?! How’s this even happen. He has stepped on a board and put a nail completely through his foot.. did he say anything?!? Sure didnt until bath time.

When he has meltdowns he inflicts all sorts of pain on himself.. but it never hurts.. but even odder.. he barely hits his toe on step..end of the world.. hits his knee.. the world has stopped spinning. I don’t know why or how. But his pain tolerance is unheard of. It is like it is hypersensitive or not sensitive at all.

Just some interesting facts.

Can you imagine breaking your hand..foot..or anything really, and never feeling it?!?!

Reality 8/24/18

What is reality?
Have you ever wondered is this real life? Or ever seen the movie inception.. just a dream within a dream and so on. People use the phrase “well that’s reality” or “so and so needs a reality check” but what am I checking? Because my reality and the next persons reality are possibly two different things?!?! Or may not I’m not sure… here is how reality is defined..

re·al·i·ty

rēˈalədē/Submit
noun
1.
the world or the state of things as they actually exist, as opposed to an idealistic or notional idea of them.
“he refuses to face reality”
synonyms: the real world, real life, actuality; More
2.
the state or quality of having existence or substance.
“youth, when death has no reality”

So by definition no two people can have the same reality per say.

I know Zequals reality is way different than my own.. his reality is no one ever gets hurt.. no cars wreck(because you can pull into a garage and it fixes them) no one dies or goes away(I dont know where they go exactly) the world basically never changes in his reality. He doesnt understand that things cost real money, or people can get hurt and even pass away. In his world if you smile at him that means you are his friend, you can hit him, take his things but if you smile at him he associates that with being nice. He has no social skill cues. He know what happy is(smiling) sad is crying, mad is a mean voice but other than that he doesnt know anything.

He does live in his own world, his own reality. I always want him to live there. A place where he never knows the worst. Because he hears the word “retard” he doesnt know they are making fun of him, or even that it is horrible word. He doesn’t understand that if they take his pencil and throw it that they are doing it to be mean and they aren’t playing a game with him.

He knows that we dont use the word hate.. but not because it is not nice to say, or that it could hurt someone’s feelings. He knows not to say it because he was taught not to say it. Yes I have told him we dont say it, it is not nice,and hurts peoples feelings. But does he know what that even means?

His reality is blissful ignorance.. he is a kid.. he doesnt know any different. This came about because after school he was asking me if when goes to high school does that mean all the middle schools come together. I said yes they are seperated into two highschools.. oh ok he says. He says mom after high school does all those kids go into two colleges? I said you get to choice which college you want to go to depending on what you want to do. He looked at me and began talking..not about schooling but about getting a job to pay for his own pumpkin cookies when he is 18. He continued that he is going to live with me. It made me laugh because all he is worried about is pumpkin cookies.. then he began rambling about a game then his shoe. It also made me sad because this whole time he was using very large words, picking at his fingers, checking to see if seatbelt was on tight.

If you know Zequal you know how he speaks and the pitch of his voice and the words he uses. You would also know he doesnt talk after school except to ask if we are getting a snack. Then he plays his phone and watches his videos. So you know it was one of the many personalities. They come and go lasting few mins to few hours. You can tell by his body language voice and just him. Since school started more often than not.. another one came at dinner time. He walked by me as I was eating.. and stopped looked me dead in the eye(doesnt so) and ask me if he could have some of my porkchop…umm sure sure you can.. ate big bite and said he loved it?!?! What.. ok.. he than ask of I would make him some for dinner tomorrow and walked away. So hour later I ask if he wanted me to make pork chops and mashed potatoes tomorrow night. Zeq was like no!!! I don’t eat that stuff!!! I said ok and walked away.

Which got me thinking. My reality is different than yours, zeqs is different than mine. But do these personalities have their own reality?! Or is it the same as zeqs. The person sitting in the car with me telling me about working. Or the person who put pork in his mouth for the first time ever. I look at him and I see my best friend I see my son. But I know in my heart that that person for whatever brief moment isn’t him and I don’t know what that persons reality is.

Just in generally I know my reality. I know what I need and want out of life to a point. No one ever has anything planned 100% I also know that my reality is to teach zeq how to live life without me one day…not any day soon or ever if I get the choice. But sometimes reality isn’t good or simple. Because in my reality what is going to happen to him if something happens to me.. will he be put in a facility (been there done that) will he be ok?! Who will sit with him and listen to him talk for hours about his game?

Reality is different from person to person. People may have same hopes and dreams. But they will obtain them in their own way. So when you hear someone say that person needs a reality check.. maybe just maybe the person saying it needs the education lesson. Maybe they need to come put zeqs shoes on for a day and live his reality then maybe they would appreciate small things like pumpkin cookies coming back out, or an old worn out ghostbuster shirt. The little things and life can be perfect for someone.

Sleepy 8/23/18

Sleepy…

First thing first… 2nd day of school! The shoes were a success!!

Back to it now.. sleep! Some are probably thinking what about it. You close your eyes and off you go.

Well Zeq doesnt have it that easy. If it was up to him he’d probably never sleep ever. He is like the Energizer bunny goes and goes until passes out. Then there’s odd reality that he can sleep very little. Like a few hours and be able to go for days longer. I myself personally enjoy sleep, wish I could have more.

As a baby Zequal was a very iffy sleeper. Used to walk around Walmart in his carseat to get him to nap. Then only to awaken a short time later. Then around age of 2 he began to have night terrors. He would sit up screaming, tears running down his face, and eyes shut. This went on for a long time until he was placed on medication. Then there was period when he would sleep walk. Every night fully asleep walk then just stand over me, when I would wake sometimes would yell because was that alarmed.

At a young age I dont know if his mind or body said hey you can go a long time without sleep. But he could and still can. When he has a meltdown it exhausts him to the point he closes his eyes and drifts off to sleep. Other times he looks at me as if I am alien because I tell him its bedtime.

Once when things became bad, after a hospital visit he said awake for almost 6 days straight. He didnt bother anyone just stayed awake. I have no idea why, and he couldnt explain to me. All he said was hes not tired. Ok buddy but mom is.

When he was 5 he rearranged the whole entire kitchen in the middle of the night because wasnt tired. He was so proud of it. He told me it was silly for butter to be in the fridge so he put it in the cupboard. Also that purple spoons couldnt touch anything else so he put them stragically other places. It took me about 5 hours to put everything back where it needed to be. He was proud of his work, and told me it didnt bother him anymore.

Some say, have you tried sleep study.. we sure have. Horrible experience and one I dont want to try anytime soon. We get to sleep study. The bed is uncomfortable, makes noise, cold, and hes not tired. Then they try to hook him up.. oh well that wasnt working after about an hour of trying we got all hooked up. He looks and me and says I think they are putting stuff in my brain. I say no they are just measuring it. Lights out off to sleep we go. In the morning get all unhooked. Thankfully. Because he was ready to go. They gave him a print out of his brain waves which he thought was so cool(he still has it to this day)

Days.. weeks go by the results are in: not sleep apnea, not restless legs.. so no reason he wouldn’t be sleeping. Interesting fact.. oh yay special case. In an 8 hour period he never fell into a rem state never once. He was awakened 13 times, aroused but never fully awake 74 times. 74 times can you imagine never getting a good night’s rest. Never falling full into dream state?!?! No real reason, nothing to try, just kinda like oh now what do we do.

Imagine being up for days upon days.. imagine never getting full nights rest, imagine no napping. But yet just keep going. I dont know about you but I’m tired just thinking about it. I’m tired for him. But when you lay down tonight just think about these kids laying in bed because they are told too, but never getting that rest.

First day blues.. 8/22/18

First day blues…
Well we came we saw we had our first day of school….

Was it a perfect first day.. no.. was it the best time of course not. Did we make it through it. Yep we did. Alarm goes off, let’s do this. Zeq was surprisingly ok getting up.. yay a victory (small to some huge to us) next clothes… strategically picked soft shorts for comfortability.. cotton tshirt for the same. Puts on hes ok with them both. Sweet…. breakfast has the normal donut. Still ok.. maybe we got this. Socks and shoes.. here’s where we start to go downhill quickly. One sock on…these are too long. Ok got this I’ll roll them down. He looks at me funny but let’s me and is a little better with it. Shoes.. well this didnt work out in our favor. Puts on. Too tight.. loosen them.. one feels funny. At this point 15 mins fight with these shoes. Time to leave has past. Meltdown begins. Ok ok you can wear sandals.. you wanna wear sandals(dumb decision on my part giving him a choice) no dont want to wear sandals. Ok buddy but we got to go. Make it to car, during meltdown. Zeq you can take your shoes off right after school.

Start our route to school. 5 minutes into it.. these shoes are gonna make my feet go numb.. I cant feel my feet. So the shoe fight continues. Turn around I want my sandals.. please mom please I need my sandals, I wanna wear my sandals..see why decisions are so bad…….

Zeq we cant turn around we are literally pulling into the school. So then begins the added part of our morning. Why do I have to use a book bag. I dont want to it makes my back sweat, it wont fit in my locker, its heavy. Please lord just let him make it into the school. Make to school, take our normal picture and out of the car. Not after promising I would atleast look for different shoes today. Whew in the school he goes.

Fast forward school day. Gets in car to go home. How was your day buddy. It was good. Your shoes do ok? Yep they did fine.. uggh.. all that for they were fine.. uggh.. but glad it worked out. We bought him another pair of shoes, ones without laces. He tried them on and loved them. So hopefully he loves them tomorrow.

After dinner we ask him what he liked about the first day?! nothing!! What is something that was bad about the first day?! His shoes!!! What is something you would change about first day?!.. my shoes(damn these shoes) and he would also not go to school.

After all said and done he made it through his first day. That is all that matters. He got new shoes for tomorrow and hopefully they will help.

You have to pick your battles with Zequal. If shoes is problem not necessarily an easy solution but not one that cant be changed. When comes to clothes he doesnt get the choice because it cause way to much pressure on him. Dont want to carry a book bag. Can be fixed as soon as gets his locker.

So at end of the day today was a victory! We will worry about tomorrow when it comes. Each day has it’s own challenges to overcome. So we will wait to see what awaits us tomorrow.

Every child on the first day of school has excitement or fears. Just remember some kids excitement and fears are so overwhelming it cripples them for either few mins to hours or days upon time. They need a little extra time to adjust. Be considerate.

Most notorious question asked… 8/21/18

Most notorious question asked…

So the most notorious question asked about Zeq?!?!.. is… when did you know.. notice that he may be different….

I mean we are all different in our own ways.. but definitely the most ask question I get.

I mean as you go through life. You notice things now..and think man I should have noticed that before. Right?!?! Well no. Because no one ever knows or can pin point the exact moment that something is off.. or slow.. or odd.

I could say it was at a week old when he never slept…ever!!! I could say it was when he didnt walk til almost 2. Or when he would stare at ceiling and talk to people. Or maybe it was when he was 3 and had to wear his lightning McQueen shoes 24/7 for almost a month(I mean only taking off for bath even sleeping in them) or just maybe it was when it was time to be done with bottle and he didnt drink for almost 2 days because of it. Or how about when he watched the cars movie non stop over and over until I had to replace the disk 3 times. It could have been when he would only drink strawberry milk out of a green cup. Oh yea that one time for his whole kindergarten year he wore a picture of me around his next. Oh and this one phase for a few years he had night terrors. I mean there was also the fact he didn’t potty train until 7. Or just maybe at 13 he can’t tie his shoes.

Yes a lot of this came after diagnosis. But when you have a new baby and he is amazing and not crying or seeming in pain. It is as if he is great. You dont think to remember the little quirks. Because he is perfect.

I can think of million things I should have caught or wrote down now almost 14 years later. But I didnt.. nope sure didn’t. My son was a healthy baby. So I didn’t question a lot of things. But maybe I should have..? But what difference would it have made? None not a single difference. He got diagnosed at a very young age of 4 thanks to his pre k teacher. She noticed things, and asked questions I wouldn’t have even thought twice about.

So at age of 4 he got his first set of diagnosis. Did it change who he was?!. Nope sure didn’t and if he gets more added as days/years go by.. is it going to change him?? Nope sure won’t. Will it help understand open possibilities.. of course. But nothing would change him, and I would never change him for anything. Sometimes I am ask if there was a magic pill to make it all go away would you try it?

I have thought long and hard about this… I wouldn’t. He is who he is!! Every ounce of him is amazing. He is my best friend in this whole world. I wouldn’t change him no matter what. Would i give anything in this universe to make his life easier.. of course sign me up.

He teaches me everyday. I learn so much from Zeq. I learn about fear, and struggles and he doesnt even know he is teaching me. I am his voice on things he can not say. I will always be his voice.

So I quess to answer the question everyone always asks. When did I know.. I knew the moment he was born that we would have the adventure of our lifetime.

Routine routine routine

Routine routine routine
Most important thing in life in our house.. you guessed it. Routine!!! In some sense everyone has a routine of you think about it. You get up go to work.. eat around the same time everyday and so forth. For Zequal routine is a little different. Yes we get up, medicine, breakfast etc. But we are on summer break with school starting in just days. Well to say the least it has been what day is it over and over. Mom I dont think I remember my schedule. I have it wrote down buddy. So the next week or two getting into school time routine shall be fun. An autistic persons a routine isn’t as easy to skip something as small as having lunch a half hour later, or a shower in the morning instead of evening. Such as Zeq when he wakes up you can say what time is it. Looking out the window he replys daytime. Just the same as if it is dark it is night time. He doesnt associate the time of day with a number. Numbers are for items or things. Dinner is 5:30. When the clock turns 5:30 it’s time to eat. We have came to the conclusion that he doesnt know when he is actually hungry but the clock says 5:30 so he must be. Just same as 8pm medicine time. 6:30 bath time 7:15 snack. His whole day is laid out into a number.

Believe me he knows it. He lives by it. When his routine is disrupted it is not that easy, cant just say hey buddy we will bath at 7 tonight, because he says we cant do that because I’ll miss snack. Because to him it has to be this way and this time or it doesnt work.

So when it comes to summer break.. it is rough it takes him 3 weeks of meltdowns or rapid personality changes to adjust. Because his whole world is upside down. Then back to school right after we just readjusted. Same happens in winter breaks and spring breaks.

Between personalities coming and going and him feeling like he doesnt know right from left. Somedays become to much for him

So when you wake up late and say I’ll shower after work, or your dinner gets pushed back an hour because you were busy. Just remember there are kids melting down or crying because they believe since it is 5:35 they cant eat because it too late now. Or that we dislike them because we are starving them. Or heck they may not even know they are hungry just know it is past time to eat.