Energy and more energy

There are times during Summer Break when Xavier starts to get Cabin Fever.

Because he is still having Meltdowns and I have yet to find a Summer Camp, etc that can handle him, Summers are usually spent at home with me.

I work nights so we usually get up later in the mornings
This is something I really feel guilty about in my parenting of Xavier.

Trying to balance the need to work and care and keep up with him.

On days when he is just bursting at the seams.. The CABIN FEVER starts to get the best of him and Me....
I have found that a little bit of physical activity helps him.

Especially if it is outside...

The Summers here in GA are like living in a sauna..
Soon after we started our walk , Xavier starts looking for a shady spot and finds it by the lake.

Then he starts asking for what he really thinks will cook him off..."Green Juice" Please ...
So afterwards we had to go get his "green apple" slush from Sonic.. He even showed me his "green tongue"...

So just a 30 minute walk on this day, really did us all in.
But at least I got a few hours of peace and quiet from Xavier and the Lucky afterwards..;-)

Some motivation to keep going....

http://espn.go.com/espnw/video/11260612/think-normal

Summer Swimming....

This is why we only allow Xavier to swim in "Salt water" pools.

I noticed early on that when he would swim in Chlorine.
He would become sick.
His bronchitus would act up and his behavior when down hill after the swim.

http://wellnessmama.com/10658/minimize-swimming-chlorine-exposure/

Chores for the Special Needs child.....

Summer is coming to an end and our new "Chore Schedule" is up and in effect.
The house rule is " You must do what you are supposed to do before you can do what You want to do" ... And Xavier is on his ! Go head Xae, Xae! ... #proud momma... 
He wants and will get his "Computer time" .... :-)

I feel that whatever my oldest can do Xavier can do it to or at least give is a try.
Sometimes he may not do it perfectly, but Practice makes Perfect.. he may just need a little more practice to get where he needs to be and that is alright with Mommy...

 

 

He Even Vacuum the Stairs...and he makes his bed .....
 
 
He started off practicing at School in the "family living center" .. Then I started having him make his bed at home as well for practice...I took the bedskirt off this Summer because it seemed to confused him when he went to tuck in his sheets.. I figure I may cover it later with a pretty fabric for decoration but for now as long as he is getting close to making his bed perfectly,  who cares about the bedskirt...

Those small moments that make you smile....

I am always tickled when Xavier watches this show and "gives his name " and puts his arm in at the beginning of each show ... #toocute

https://www.facebook.com/pages/Super-Why/107660975923236
 

THE DAY AFTER A MELTDOWN

The Day After:... THE MELT

Many people have NO idea what Autism is and what it is like to live with a child or a family member that has it.
I can say that Xavier has come a LOOONG way from where he started and will continue to get better as we wont ever give up on that.
There was a time here in the last two years where Xavier was having these types of meltdowns 32 times a month...Yes, He was DOUBLING UP ON us some days..

But with some very special people: His teacher at the time,a wonderful behavioral specialist for the school system and the staff at the Marcus Institute, when he left elementary school he was down to about 2 a month.

Currently, he may have these every few months. I think the last time was with Daddy and Jordan at a Flea Market about 6 months ago.

  Before when Xavier would have these types of meltdowns, he come after whoever is keeping him from his "desired item" and on yesterday ' that person would have been me"..

But for some reason even in his most frustrated state. He would NOT HIT Me..?

I was ready for it. Was ready to do what I learned to block the blows.

Because unlike two years ago when I took training.. He now LOOKS at me EYE TO EYE and I am sure outweighs me as well.

He is stronger than an ox like his daddy!
The bruises I got was from trying my best to get him into a CPI hold on yesterday to walk him out the store and I have to tell you it was like he was playing with a rag doll! ...
But I also know he even in that moment in what seemed like TOTAL LOSS OF CONTROL, he was understanding that he was upset, but did not want to hurt me and for that alone. I praise God...

I feel the more people are educated, the better all of us will be.

I am blessed to have worked for STEP, Inc and learned so much from Jenness Roth, Jawanda Barnett Mast and Laurel Quinlan Ryan and a host of others about training and help for Xavier while being able to educate other parents on IDEA and how to get a better education for their children through public schools as most Middle Class families have to send their children to Public school.

Even more, most Middle class families can not afford the Medical, Educational and General Care costs for a child with Autism.

The Hunter School was mentioned in an earlier post and I am asking each of you to contact them and ask about their tuition costs per year at admissions@hunterschool.org.

I am going to caution you beforehand and tell you the cost per year is about the same amount as a small house in Georgia,
around 120, 000 a year. What family can afford that?
Plus with all the HORROR stories you hear each day about children who are sent to school and come back home each day being abused, physically, and sexually who wants to send their child away.
Especially if they have very little language to "tell" like Xavier.


Yet, with this post I am hoping to get others thinking so that when they see a family dealing with this in the mall, movie theater or even CHURCH, they will have a sympathetic and not a Judgemental heart.

I also wanted to give the REAL side of Autism because often when Advertisers or Autism Groups show people with it, They usually show people with Aspergers.

In my opinion, although people with Aspergers do have many challenges, it is because it is a "more" Acceptable" form of Autism and more easy to show the public ....
Yet, the majority of people living with Autism are Moderate or Severe.

By Autism scales, Xavier is considered Moderate, he is potty trained, he has some language, he can dress, bathe, and does his own Daily care, brushing teeth, etc. He can clean his own room, Vacuum better than his older brother and can now this year can now make his own bed.
He can sit in church and remain quiet and even attend Sunday school with mom and dad.
But that is with MANY HOURS put into him from his parents and teachers in Public school.

With that being said: what do we do in our own home when Xavier has a melt down like this?

First he gets disciplined: YEP, nobody escapes that in the this household!
Daddy dont PLAY THAT! ....LOL!

But on a level he can understand..
First:
He lost his computer privilege for yesterday.
The Game we went to pick up at Walmart, he cant play till tomorrow either.
But only if he has good behavior at church.

And yes, like a typical child, he was NOT Happy.

But we have to show him that although this is something he cant change ( he will always have Autism) He behavior is not appropriate in the world we live in.

For many kids with autism this would not be an appropriate response, because they would not understand it, but for us and Xavier he does.
And you best believe he has parents who believe in well behaved children.

When I cam home from work last night, he was still awake...?

When I went into his room, the first thing he asked for was "Computer please."

I sat down on his bed and told him "no".. he lost Computer today.

Then he said " Morning" meaning.. " Will I get is back in the morning and I said yes..
Then he went through what he hoped to me his schedule on today..Saying out loud to me
" Morning, Breakfast, Haircut, Shower, Computer".. and I nodded...

Then he said " Gimmie Kiss"... "This is his way of seeing if I am angry with him for his behavior or willing to make up..." so I smiled and told him..
" You give ME A KISS" and he did....
Then he asked to go to the restroom and came back to bed.

I told him goodnight and he said " Good night Mommy, I love you"...

And it is just another day....

THE MELTDOWN

On June 20th
I decided to take Xavier with me to Wal-mart to pick up a video game order online for him.
But on this day, the short shopping trip went Totally wrong...

I spent an hour in Walmart struggling with a fighting, kicking Xavier. We went to pick up the video game we ordered for him and He wanted a LIFE GAME BOX and got away from me and got on the aisle with it.
It took over one Hour to finally get him out the store.
Sheriff came as well many Walmart workers and managers and even a man who offered to pray for me.
Then God sent help...
A worker that used to work in a group home helped me get him in a wheel chair. Big guy like his father so I think Xavier sort of "took to him"
I asked the mgr if I could Give him the box he wanted and then once in car I gave it back to Walmart worker to take back in the store. The ride home was rough but we made it through.
Then he got a little calmer in between his crying and screaming ...he stops and says "I'm sorry and it will be alright" and I melted.
You may say why post this?
Because ...
This is the real side of autism no one advertises but millions of parents deal with everyday and though I have been trained to deal with it ...and the training was NOT CHEAP... And dealing with it even with training NEVER does not make the emotions of it easier.
Then I think about the parents that can't afford care, that don't know what to do.
That can't attend church or go anywhere because of their child and I won't complain. So when you see laws NOT being passed to help the millions of people who are suffering, think about who you vote for and pray for those families as well. Families like mine...
He is still whining when we arrived home,His t-shirt is torn to shreds, and so is my heart because although these things dont happen very often anymore, they are NEVER easy. He was much calmer so I put some Ice on my arm and and marching on..