Happy Halloween

Happy Halloween from our family to yours.

Zeq got out of the house.. he trick or treated his way in his clothes. We all hid our Halloween rocks. As well as got buckets of candy.

Hope everyone’s Halloween was great.

Onward and upward!

Oh Hallows eve…

So the past few weeks have been lots of ups and downs for Zeq. He has been many personalities and very rapidly at that. He has went to school as them, came home as them, had to wear pants(once).

He goes from crying, screaming, overly happy, inconsolable, erratic to name a few. He never wants to leave the house, or his bedroom at this point. Hes major food of choice is spaghetti over and over.

It’s not out of our normal. It happens every year same time every year. So nothing new. We have good days, we have bad days. We have nice personalities and we have not so nice ones come more often this time year. After tomorrow it will become worse..

Christmas will be out in full force. We will tackle that one Thursday.

But for tonight we did get him out of his room. We decided we would paint rocks tonight to take with us on trick or treating tomorrow so we can hide it. In hopes that someone will find and rehide.

During his painting of his rock Johnny briefly visited with all his squeals and noises, then back to zeq telling us about his game. Then telling us about a beeping that was going on in his room(mind you we couldnt hear a thing)

But for tonight he left the room..

Kinda the unofficial start of our projects which will start more and more, when these darn elves comes.

If you are out in about in the Bruceton area tomorrow there will be 5 rocks hidden 🙂 be on the lookout.

As we always do..

Onward and upward..

Seasons changing…

Everyday and every year, we go through the seasons. They change.. we adjust and enjoy. Theres something to enjoy about each season.

Seasons are a little different at our home. We have out of school season, we have starting school season, and we have dark raining stay inside season. Also we have the season we are approaching… we call the bad season. It usually comes around the first of November. It last until usually February. There is a build up period to it. That’s the stage we are in now.

Personalities come more frequent and often. He sleeps less. The personalities have been coming more at school. He gets more headaches. He appetite goes down. Classes change at school which throws him off even more. The excitement of Halloween, then breaks in school, then the hustle and bustle of Christmas. It over stimulates him. It wires him to no end.

You know years ago when it would start I could figure out why. Because he loves Christmas and everything about it. So I would think what is wrong.. why is he so up and down.

But as the years have past it happens the same week every year. There is no way of preparing yourself per say. But we understand it more. We prepare ourselves and brace ourselves for the storm the best we can. Does it work?! Sometimes, sometimes not so much.

People get so caught up with the busyness of holidays. We try and do alot of in home projects to create calmness and even more routine than we have already.

Often people get so busy that they get caught up and forget some people have real struggles around this time a year. So please take the time a slow down. If you see someone melting down do not judge them or their parents for things they can not controll.

As well weather this season. We will do as we always do.

Onward and upward

Patience…

So I was thanked today… ok well I was unaware I did anything that deserved a thanking. But she continued… she thanked me for my patience… my patience with Zeq..

What?! Why is someone thanking me for patience..

She told me the story. She had witnessed a young autistic boy begin to meltdown in a store. He began stomping his feet and his voice became loud. He did not want to go yet. His parents were done and ready to go. But he was not. He wanted to look longer. Or maybe just wanted to be out longer. Only this little boy knew why he wasnt ready to go yet. I personally know this little guy. He becomes excited easily, as any kid would from time to time.

Getting back to story.. it was time to go, and he was unwilling to go. So both parents took by the arm, and started toward the door.. he became louder and louder. It wasnt any of this did she had a problem with it was what happened next.

So parents get him out of the door and once the door closes, you hear the father start yelling at this boy, that he needed to shut up, act his age, and should be grounded for his behavior. She said the look on this mans face while yelling was awful.. he was so angry and this child. The mothers face read something completely different, it read sadness and hurt.

She then thanked me again.. for having the patience with Zeq. This has puzzled me all day..

I’m his mom.. that is my job. To do what is best for my kids always. Being patient isnt always easy. I wasnt born a patient person, you can ask my mom. But it is something I have learned over the year. I am no saint, nor anywhere close to any sort of perfect. I do have a lot of patience.

Zeq has taught me that since he was a baby, he patient one day he will sleep. One day he will walk, and talk. One day he will take off these lightning McQueen shoes(9 days later.) He has taught me if he is not learning how I am trying to teach him, maybe just maybe I should learn myself.. and learn how to teach him so he can learn.

It has made me think about this little boy, what happens behind his closed door.. being punished because he is autistic. I think of not just this little boy, but a lot of disabled kids, and adults alike. Are they being treated ok?, are they being forgotten about?, do they have what they need to be successful?! Or are they being bullied in the own home, their safe place. One will never know. But it makes your heart hurt to think about. Because at the end of the day, taking the word of an adult, or a disabled child who can not speak… most of the world is taking the word of the adult.

No me.. I stand behind all the children!!

Patience is a virtue.. it is learned, it is mastered to some level. The world has a way of everyday testing it. It’s how we overcome it and deal with things. That’s what makes us who we are. We define ourselves instead of letting life define who we are.

Thank you for thanking me, but I am just doing my job as Zeqs mom.

As always

Onward and upward

Inspiration

Inspiration can come from many places, and many things.

Seeing your favorite sport hero do something great can inspire someone to put in extra at practice. Seeing someone buy a fancy new car can inspire you to work more hours or save more money.

Inspiration can come from any facet in your life. Do I believe Zeq becomes inspired? I dont know that he even knows what it means. But that doesnt mean he doenst inspire to do something. Theres this board at his school, and if you get straight As you get your picture on this board. He wants so badly to do that. It’s not that he doesnt try. But everyday he sees this and he wants to be on it. He does try.. he got honor roll last year on his report cards. He was so excited. But it wasnt enough to get him up on that board. So this year first day of school he again tells me mom I wanna get straight As to get on that board

I tell him he has to try really hard. Which he does. He tries his hardest. But his hardest sometimes isnt enough. Enough to get him on that board. It breaks my heart because just going into school is hard. Harder than you will ever know. Then the work itself. He doesnt understand half of it. But the reality is why does he even need to understand some of it. The reality of it is.. I learned long ago.. he will never need some of these things he is learning. But still has to learn them. Has to be a pro at them so he can get on this damn board.

What I want him to do is try. Try his hardest. Find something that he loves, and work for that. I want him to learn things at school that will help him at the end of the day be the best he can be. Teach him the things that he needs to learn in life. The life skills he will need to be ok. Not about getting straight As and making it onto this board. I will never tell him he cant make it on this board. I hope that he does. Because that’s what he inspires to do. I would never take that away.

Inspiration comes from many places. Zeq is one of my inspirations. He is my hero in a sense. I inspire to be the best I can be to help him reach that goal of that board. Do I fall short at times. Ofcourse. But everyday he shows me that just because life deals you a bad hand doesnt mean you have a bad life.

In the big picture he was dealt a pretty crappy hand. I could be bitter about it and angry and the world because it’s not fair. But that would do no one any good. Because the fact of it is, he knows no different. He is doing the best he can because it is all he knows.

He inspires me by his love of the little things. How the simplest things can be the best. How some of the best things in life are nothing to someone else.

Life is a lesson and we can learn from it if we slow down, and find something that inspires us.

I have found inspiration and for time being Zeq has found the straight A board as an inspiration.

As always .

Onward and upward

IEP’s

Some know about IEPs and some have no idea what they are and what they are used for.

IEP defined
The Individualized Education Program, also called the IEP, is a document that is developed for each public school child who needs special education. The IEP is created through a team effort, reviewed periodically.

Throughout the school year if you have a disabled child you usually have around 4 meetings. One at the beginning and one at the end are required. One usually after the first 9 weeks, and only usually after the holidays. Myself have had tons of iep meetings. Some only have the required and that’s all they need. It depends on the child’s needs, and also probably more importantly on how the school is following it.

Some parents go into meetings not knowing what to expect. They are nervous and some even scared. They have these teachers, principals, and other staff.. and feeling somewhat bullied. The school tells you what to do.. and most parents go along with it. Not because they think it is the right thing but because they are told “this is how it has to be” “this is what is best”

The latter one.. this is what’s best?!?! No.. that isnt what is best. School only see your child some of the time. You see your child all of the time. So unless it is what you think is best.. do not settle.

I myself have read the rights of parents and students when it comes to Ieps.. I have had counsel with iep teams(who are the states advocates for the child) I myself have sat through tons of meetings. I will say when they schedule at meeting for Zeq they schedule us very last because what is supposed to be 20 mins has lasted upwards of hours. No not because i don’t agree(there are many times i dont) but because if you feel it best for Zeq.. you better be able to show me cold hard facts, why it is better.

At first with school I was uneducated about ieps.. so teachers would tell and do what they felt.. and I would leave meetings angry, upset and frustrated because they arent helping my kid. So I educated myself. I took control of it. I as well make sure they are following every word that is written in it. Not because I am unruly mean or disrespectful. But because for 7 hours you are with my child. For 7 hours a day I put the safety and well being of my child in these peoples hands!

My child deserves every opportunity just as the next. Wether it be day to day life at school or it may be a field trip that special accommodations need made. You can never be told your child can not go because they are disabled. If my child can not go for that reason, then the kid next to him shouldnt be able to go because he wears red shoes.

Alot of parents are unaware of these facts. I know them only because me and Zeq are living them. No it is not easy. But we have done it for 9 years. We have been around the block. It is trial and error. But this year so far has been the best outcome so far with the iep. But it is early so I’m sure we will have some interesting meetings.

If anyone is new to ieps or not new and has questions. I would be glad to help anyway I can.

Onward and upward as always

Box fans beads laptops…

Box fans beads and laptops are life! Well atleast for Zeq! He is so excited that he can watch YouTube on his laptop while playing his game. All the while sitting wearing his Halloween beads in front of his new shiny box fan He was so excited for it, and it’s not a regular white one, but it is a cool black one.

You see it as an odd gifts(beads and a fan) he saw the most amazing things in the world. Once years ago he ask santa for a heater and people laughed. Well Santa brought him a heater. Nope he never used it. But he has it “just in case”

His new fan he has opened it and is using as I type. Some of his birthday presents from yesterday and still pristine in their boxes, and they probably always will be.

You see Zeq had a rough day yesterday. He woke up and ask his sweetiepie for chocolate cake, but we had planned and made pumpkin as a surprise. But it didnt work out for us. But luckily she had one she could make and all was saved. It’s not that he didnt want that pumpkin cake at all. It was more that every year on his birthday he has chocolate cake. So in his mind that is what was supposed to happen.

He didnt understand a lot about yesterday. So he was up and down very often. But when it was time for presents he opened the one from sweetie pie and pap pap and there it was his box fan. The excitement on his face made all the ups and downs of the day worth it.

See kids with disabilities aren’t being rude, disrespectful, or just being upset over something irrelevant. They just dont understand. They dont comprehend things that are out of their “normal.” When you have eaten chocolate cake for 14 years you just assume it will be there. It’s not even about the taste for Zeq.. it’s just about the words.

Even as average adults, humans. In life if you brush your teeth with Crest everyday for your whole life and then all the sudden you have to use Colgate you are usually upset(with the store) frusterated (because it feels and taste differently) and cranky just because it is not “your” normal. So it is no different than Zeq. Only difference is we get over it fairly quickly. As for Zeq that’s his life, there is no varying from it, it is not allowed in Zeqs world, and that is ok.

We adjust and keep on keeping on. No it’s not easy. No its not perfect. No it’s not graceful what so ever. But it’s our life and we will keep living it the best we can. Because theres no giving even if we want too, because for him we are all he has.

At the end of the day all we need is a box fan 😉

As we always do…

Onward and upward.

Big 14

Happiest birthdays Zequal! You are a hero in my eyes, my best friend, my mini me. You are one of the strongest, bravest, caring, stubborn people I know. You go through more in a day than will ever in my lifetime. You make me proud!!!

Your excitement over the smallest things brings joy to my heart, on your hard days it breaks my heart that I cant help you.

You inspire me to do the best I can, and never give up. Because no matter how many personalities come, or how hard your day is you never give up. I wish more than anything that I could take some of it away from you. So you could just be a kid.

God didnt give you me, he gave me you. So you could teach me. You teach me something new everyday, whether it is about a gun, or laptop, or how the smallest things in life are and will always be just perfect.

I hope you had a great day!!! I hope you always know that I love you.

Happy 14th Zequal Alonzo..

I guess I have to say happy birthday to John, Johnny, James, Henry, Jeffrey, Jonathan and Shadow as well..

Onward and upward

Overwhelmed by excitement

You see sometimes in life there are double edged swords. For Zeq a lot of things are like that.

This one in particular… so for 2 weeks now our same banter has played out everyday. Afterschool what day is it? I tell him.. oh darn not today. For two full weeks this countdown has consumed every ounce of this boy. Until today!! Today is the day! Today he gets to visit his sweetie pie. He gets to take his treasure.

Just has to make it until after school. Well school came and went. He got the missing laptop charger that he has been after since what seems like the beginning of time. In the car after school. The personalities come to play. First Johnny something sticky got on him. I say ok we are almost home can wash it off.. nope not soon enough screaming crying. Our usual no big deal. Make it home to grab his stuff. Well here’s John yay… needs to get this stuff off of him.. foaming hand soap and scrubbing.. some yelling but otherwise unscathed. Ok take stuff to car lock door.. nope he wants a gun.. ok.. get guns.. getting in car.. the barrel snaps.. oh lord help us all. At first it is Zeq upset.. pleading. I tell him I’ll fix it. Blink of an eye and we have James. Well you see James has no rational bone in his body, he is plain out mean. Apparently I broke the gun.. I wasnt even close to him. He hates me I’m a jerk. Nothing new. Rocking slamming the whole nine.

Stop for a drink and the dust settles.. all is well Zeqs telling me we can fix the gun he can paint it black no problem. Starts playing with his gun, and his phone. Not another word.

See what some dont understand is yes being excited and having something to look forward to is a pretty great thing. It is something to work towards..etc.. but for Zeq it consumes every part of him, it exhausts him, it takes everything out of him. He has waited for this day for two weeks. But it absolutely overwhelmed him.

But we finally make it. Happiest kid ever, and pap is looking at his computers. One is up and running. He is thrilled! As for me I am so happy he finally got to today, but I am sad as well. Something he has been so excited for, the day comes and I watch him exhaust himself out of pure excitement.

Tomorrows a new day, with new adventures.

Onward and upward we go…

New acquisitions.

In our day we have routine and more routine. We dont vary from it often. So in picking up Zeq from school it is no different than our normal days. Get in car, he says mom what day is it(his countdown to sweetie pies) I ask how school was.. no answer just hands me his behavior report. Then he gets his phone. Nothing new. But today, he begins….

Mom did you see this bag I brought home. No buddy I didnt. It is big and it is heavy. Ok buddy …. mom do you know what’s in it? Why no, no I dont. He proceeds to tell he got a ton of cords…(literally a ton) he said probably 40.. I said wow buddy, he said I almost got 200. Why in the world would you need 200 cords, he is going to sell them apparently.

But that wasn’t the best thing, so he goes on… mom I got this big dvr.. um ok.. a dvr?!?! Yea a dvr.. ok.. so as we continue to drive. Hes is telling me about this DVR. I’m thinking maybe like an older tv box or tivo. He just talks and talks about this box. He is so excited. So we finally get home he takes medicine and goes up stairs..

So I open this bag… cords cords and more cords… then I finally uncover this DVR he is so thrilled about.. I pull it out….. welp not the DVR I was thinking.. it was a VCR. Yep old school VCR. I laughed so hard at this dvr….. but you have no idea how thrilled he is with this thing. All these power cords that dont connect to anything, and this vcr. They are gold to him.

His excitement is the best. School has always been very hard for him. He doesnt have any friends, and most dont want to get to know him. But 2 teachers have allowed him to be himself. And these “treasures” make school bearable for him.

I included picture of his “dvr” and random bulb he had to have.

Today was a good day, we will see what tomorrow brings.

Onward and upward as always