When Autism Hurts

I haven't had time to blog in a looong time.
I have been so busy with life that sitting down to the computer seemed like such a daunting task, rather than an enjoyment as it was before.

But today in honor of Xavier and National Autism month, I feel compelled to do so..

For one, my mother came to live in GA in October and I have been so busy setting up her drs, finding a good Care Home for her and just staying on top of her care while juggling the million things I already do with Xavier.
But I am glad to say that despite many setbacks, she is finally settled and feeling and looking good and I am happy and grateful to God for that

The month of April is National Autism Month.  I subscribe to a website that uses this month as a month of prayer for those directly or indirectly affected by autism. It is called prayer@childrenofdestiny.org


Being that I am a Christian, I believe that with all the things I can do for Xavier as his mother, the most powerful, effective thing I can do for him is to pray for him.
There has been many times on my Autism Odyssey that I have found myself helpless and unable to help him in my human physical frailties.
But I can always approach the throne of God on his behalf and God has never let me down when I do.

But in my shortcomings I find I do exhaust myself until I am really on my knees physically before I do.. You know how we are. We think we can handle it on our own and then God reminds us we were never really "handling it" in the first place.

I have been asking everyone on my Facebook page to pray with me for the next 30 days with prayers sent each day by prayer@childrenofdestiny.org.
I will also be asking everyone to participate in the Day of Fasting and Prayer this website holds each year during the month of April. 
Ironically for the past two years that day of fasting and prayer fell on Xavier's birthday, April 23rd.
I hope it falls on that day again this year because I am looking for the Lord to move in a huge way for him this year.

You see for the past two years we have been working on getting Xavier to stop having tantrums or Autistic meltdowns is what the term is normally referred to.

It is when someone with Autism is overwhelmed by their surroundings, or fixated on a task or upset by a change in routine that they just loose it.

Many people have posted so much about this on youtube and autism sites and I have found that many Autistic adults suffer from this as well.
It has been my goal to rid Xavier of this before he becomes to big for me to handle when this happens.

Here are some links on Youtube for you to see how this looks:
 http://www.examiner.com/article/autism-meltdowns-versus-temper-tantrums
Here is a youtube clip a mom shared on YOUTUBE of her son who has these daily
http://youtu.be/3yTvaqw9M8g
Another older child having a melt
http://youtu.be/s2lEyno1vwo

Thankfully with a good teaching staff, expensive home visits for 10 weeks in a row by the Marcus Institute here in Ga and a very good County school behavior specialist and of course PRAYERS, Xavier had gotten to the point where he would only do this on occasion, usually in a new situation or when he really wanted something he could not have.
At school he had gone from having these many times at day to on average twice a month and he had to be REALLY angry to do so.
So at the end of the Semester before Christmas, we met with the school and with his IEP team  decided to pull him out of regular school and send a school with all children with Special needs to try and rid him completely of this behavior as he was having to have a huge male parapro (we called him Mr T) with him at all times in school in case he did have a meltdown.
Since they werent happening everyday, it really was not effective and plus who wants to have their child need a 200 lbs or bigger caretaker.

I know, I know, Education in the Least Restrictive Environment.
But I knew it would only be temporary as he had come so far and why not try this seclusive environment before he goes to Middle school next year and give him a chance to learn to "Calm Himself" verses having to be physically restrained. Even if it wasnt often.

Well I am sad to say it is not going as well as to be expected. He is starting to regress and the new school isnt in a hurry to go back on the path we have chosen.
After what I thought was a very productive IEP meeting last Wednesday...

Xavier came home yesterday looking like this...

Yeah, I know.. Call DHS , Catch a case, WTW!
But I have been here before and know what to do.
Put on the armor of God and pray, but call upon Jesus the LION and not the Lamb and FIGHT!
So many emails have been sent today.

Its time for a change yall. QUICKLY.

I was at work when he came home like this. I got an email from his teacher beforehand explaining that when Xavier went to press him mouth against his arm as he does when he is upset, the teacher yanked it away and "clipped' Xavier's face..

Needless to say it was hard not to cry when I saw this picture at my desk last night. Hard to concentrate but God helped me make it through. When I got home he was sleeping, but I just had to go in and take a "peep" at him and of course kiss his face before I showered and went to bed. I tell myself it could be worse.

Xavier has been in school before where he was really being treated badly. When he was in kindergarten. The teacher and staff would put him in a room when he had a meltdown to scream and  kick a file cabinet and Jordan who was attending the same school at the time would often come home and tell me he thought he heard Xavier screaming in his classroom down the hall.

Jordan's grades began to fall and his teacher said he was having frequent urination, but when I investigated and questioned Jordan further I found he was asking to go to the restroom trying to "find" his brother when he heard his screams. This was when they were in Kindergarten and First grade. Thankfully a para-pro called me one evening and told me what was going on. To this day I THANK GOD for her courage and willingness to stand up for what was right. By doing so she went from being "parapro" of the year to having to quit her job. But today she is still a good friend and most of all Carletta Cheeseboro, is one of my heroes.. We Love you CHEESEBURGER!
Thank God Mark got transferred with his job and we moved to GA that year. It was a hard transition for Xavier, but better than where we were.

So back then and still today , since Xavier does not have the language to tell me what actually happened, I have had to learn to lean on "Godly discernment" and learned to have a "connection " with him to know when he does not want to be in a situation. I know when Xavier is being abused and when he is not.
When the things were happening in Kindergarten when it was time for school he would just say the word "afraid". It would break my heart to drop he and Jordan off at school each day with him looking at me and me trying to "make a happy" face and tell him he would be ok. Only to drive home in tears asking the Lord to protect my baby because I knew I could not.
So when Xavier got home on yesterday, We know to try and make the Afternoon as "Normal" as possible. I wasnt at home with him yesterday, but His WONDERFUL father and brother, took over for me with ease..
He had his normal computer time:

Then Daddy applied raw potato and ice compress as much as Xavier would allow and dinner and bath. Once the swelling went down some we could see the bruise underneath

This morning when he awakened, Here is what his face looks like today before school

To decide whether to send him to school today,  I try to make sure, that he is ok with going to school. I ask him whats next or say "School today" and watch his reactions. I watch to see if he is getting upset, does he say "no" when I say school?

 Most of all I try to keep a calm demeanor and not let him see I am upset as not to make him afraid or upset.
So this morning, I made sure things were "normal"
I even got a smile out of him at breakfast

He watched his favorite cartoon before the school bus came as usual and I watched to be sure he was not getting anxious beforehand ( another sign he doesnt want to go)

And in true Xavier style, he went to school with a happy heart and the true spirit of a champion

So what am I to do.
I have no choice, I must stand up for him. I am "inspired" by him.

He woke up today with a happy heart, ready to try again, SO I MUST DO SO AS WELL.

When he wakes each morning, I go into his room and I say Good morning Xavier and he says "Good morning Mommy" and then we are quiet for a few minutes and can hear the birds singing outside his window.. " Then he will say "  " I see a bird" and I say no " You hear a bird" and then he will smile.

And even today his routine did not change.
He can still hear a song, no matter the physical state he is in.

I can and I do learn a lot from him.
When I want to complain about how hard it is , or want to give up, he is a TRUE reminder to wait on the Lord and he will renew my strength,
I will mount up and fly as an eagle and like Xavier.. I WILL SEE AND HEAR A BIRD. I will hear the sweet sounds of God in the midst of my storm.

Isaiah 40:31
but they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

So when you pray this month, pray not only for Xavier, but for everyone that is affected, works with, cares for and knows someone dealing with Autism.
We all need prayer, but those of us living this each day need just a few more.

Now its time for me to wipe my tears and get to work. Xavier needs me and plus Jordan has left his lunchpail at home again...;-)

Love Yall
Talk to you soon.