No Day is a Routine Day

Ok, so I get up this morning and start the family on the road to worship as we do every Sunday morning.
But this morning is different. We are going to same church, same time, but today My husband and I are planning on attending worship.

Last Sunday we taught Children's Bible Hour and did not attend the second worship service as we normally do.

I admit, the first time we were asked to teach, Mark and I were skeptical. We teach 6-7 year olds and usually there are teens assigned to help with talking children to the restrooms, bringing us snacks to the classroom, etc. We use the teens help but for us Jordan is our in classroom assistant..  He keeps Xavier occupied.

The first time we taught we were afraid as to how the children would react to him.
Would they ask questions, would he frighten them if he made his normal " autism" noises"? What if he got upset? How would we handle that? Would one of us remove him from the room and how?

I must say when the bible says be thee like a little child. We can all learn something from children. They are HONEST, GENUINE  and for the most part WAAAY more accepting of people who are different than adults.

The first class was more fun for Mark and I than the children.  Xavier found a giant sized puzzle that two of the girls in the class helped him put together on one of tables he was sitting at. Throughout the class the girls " mothered" Xavier and little Bria even let him touch her eyelashes even when I told her not to allow him to do it.. ( Xavier has a thing for eyelashes, especially if a persons lashes are long, he has to touch them and it is a habit we are really trying to break ) She went on to explain that she had let him touch her eyelashes before as she understood why he wanted to as hers were"extra long" and made sure he held her head back and blinked really fast so we could see them.. Needless to say Mark and I cracked up and Mark told her don't blink too hard at too many boys as her dad is licensed to carry a gun., hes a cop! LOL !

Last week when we taught, Xavier got upset at the beginning of class because we were in a different room and he couldn't find the "Farm puzzle he had before.. So I took him across the hall into the old classroom, while Mark taught across the hall.
We eventually found "Farm" which is what Xavier kept asking for and I just cleaned the classroom while he put the puzzle together as he had done a month before. When he heard mark doing a Marching song with the kids after a bathroom break to burn off some energy, Xavier went over and joined in.. It was too cute and funny to see him huge over the kids marching along with them and smiling the whole time..;-)

But today, to Xavier since we taught class last week and didn't attend worship, we should have the same routine today. and more importantly he would get " Farm".. So when we started to get dressed at home, I told him " no farm" today, today we go to church and then to Nana's and he wasn't happy.

I have found that for Xavier, usually if I "warn" him of what he not going to do beforehand, he can get upset and move on. But today as we drove to church and he continues to ask for "Farm please".. I knew it was not going to be as easy to distract him. Much worse when we got to church, we found the worship had been changed to had a special program and worship service was packed!!

With the help of a "dum,dum" lollipop, Xavier made it into service, but within a few minutes, he started pointing to the door and asking for "Farm" , I soon realized this was gonna be one of those times, he would not be denied.. So when we stood up to sing, I motioned for Mark to give me his car keys and we went back to the car.. 
This used to happen ALOT. but usually one of us would take Xavier out of a place screaming to the top of his lungs. but now we have become pros at it.. I agree to whatever he is saying and get him out of the room. Today was no different.

Once in the car, Xavier began to realize that he was not getting the "farm" and that he and I were on punishment in the car and he was not happy. and neither was I.
Although Xavier has Autism, mark and I have chosen to discipline him. I proceeded to tell him that as I told him before church he was not getting the "farm" today and since he could not sit in church and be quiet we would sit n the car until daddy and brother were done as well  he had lost his usual after church treat of a " green juice and tots from Sonic.. Needless to say he was not a happy camper.

But since I know Xavier is more aware of his wrongs and rights that some autistic children I govern myself accordingly.

So while he sat in the back seat and pouted, I played on my phone, posted on my Facebook page, sent text messages and just relaxed.

Before this kinda stuff would have messed up my entire day, but over the years I have had to learn to accept these types of incidences as " ONE MOMENT IN TIME"  and that I have to leave it there after it is over... believe me it is much easier said than done and something I have had learn the hard way...

After church we went to Nanas and since Xavier associates her house with his beloved " computer" we had a little issues with him not having it and as well when it was time to leave, but all in all I think the day went ok.

But the fact remains, for a mom of an autistic child the "change in routine" can change an ENTIRE DAY.

When one of us has to miss church the other takes notes and during my car stint, Mark texted me the scripture and title for the sermon today... It was Matthew 17: 24-28 Title of sermon " GOD KNOWS ALL"..

and I sure am Grateful that he DOES...;-)

Finally I get to post!

So I haven't been able to get the time to blog for a week or so.
Besides taking a few days off for my birthday, Xavier has been having one heck of a time at school.

He has been sent home twice for behavior and he has NEVER, been sent home before.
I blame me as always.
I let the doctor talk me into taking him off of a med this Summer and although he did very well without during the Summer it proved to be the worst thing I could have done for school..:-(

I am one of those mom who never likes to give her kid any drugs. For me, after Xavier got diagnosed, I was very leary of anything being out into his system, especially pharmaceuticals and I still am.

I decided to wait until he was at least 5 years old (when most brain development takes place) and then I pushed that back to 10 years old, But when he hit pre- puberty last year , all H - - broke loose.. The kick of hormones literally turned my baby into a MADMAN!

                                                       Testosterone is a bad booger...

Top all the of the school drama I have been having with him, Jordan, my oldest, had two school prohects due in last two weeks..!
AND THEN, trying to move my mother closer to me and I have been one tired and busy chick!

I slept the WHOOLE day on my birthday, really I did...  I am officially OLD...

But anyway, now that we have touched on Xavier and his meds and taking him off for Summer and how that did not work when school got back in... Lets talk a little about what treatments I have found work ( for him)  and which ones haven't, shall we?

Help Along the Way

Many people helped me along my journey and I am one that believes if God Sends you help, TAKE IT! LOL !

We could not find much help with Xavier in Memphis and eventually I found that Vanderbilt had an Autism Treatment Center called TRIAD.
We spent many countless hours traveling there for testing, evaluations and general direction for Xavier.

Through TRIAD we have appeared on the TODAY show in 2005 and Xavier became the face of their flyers.

The doctors and staff there were the first to tell us that although Xavier could not speak, he generally understood everything we said!!!
We have done genetic testing there and have made many gains with Xavier due to the information we received.
Thank God for sending me beyond my comfort zone to help Xavier and to this day where he leads me I will follow..;-)

http://kc.vanderbilt.edu/kennedy_pdfs/discovery/discovery8.pdfhttp://today.msnbc.msn.com/id/7006980/ns/today/t/autism-genes-or-environment/#.UD2TUKPARQU

Help Along the Way

Before I was an employee for STEP,  I worked full time as an Administrative Assistant to three VP's at a major bank in Memphis.

My job kept me very busy during the work day as well as after hours.
When word came to one of my bosses, that my son had been diagnosed with Autism and that I was trying to balance work with finding care, ABA services and other therapies for him, he called me into his office.

I knew I looked stressed, cause I WAS STRESSED with doctors, therapists, it was all so overwhelming. I could not find a lot of help for Xavier in Memphis, so Mark and I would travel frequently to Vanderbilt Hospital to their Autism Treatment Center.

That manager that pulled me aside was Dana Leake.  He told me to apply for FMLA, that I would use the time off to handle any issues with Xavier and although I would not be paid, it would not count against my work performance.

The burden had been lifted.  I was able to leave work on my lunch and take an extended hour each day to pick Xavier up from school  and drip him off with the ABA therapist and then return to work. I worked an extra hour each day after the office was closed to make up my pay and the extra time also gave me time to catch up on work while no one was there to interrupt me.

Because of this, I was motivated to work three times as hard. I gained the name "Kim Possible" and I loved my job and tried to make anyone and everyone that crossed my path, feel like I cared and that I would do all I could to help them. Mainly because I knew my own boss would do the same for me...;-)

Help Along the way

Did I tell you I know a "Goddess"?  Well, not really but I do know a lady that was a "Godsend"..;-)

After Xavier aged out of Harwood, he had to go to our neighborhood school in Germantown , TN.

I was told to prepare for his first IEP meeting that I should check out some classes at a place called STEP. Inc.
I went on line to their website and the following Saturday I was at my local library to attend a free class on IDEA.

For those of you who don't know IDEA (Individuals with Disabilities Education Act) is, it is the BIBLE for parents with special needs children. It is basically the RULE book that any school that receives public funding has to follow when providing an education to our children.

The presenter that day was Jenness Roth. She went though all the basics of the law and was very accommodating and willing to answer questions, During the break, I approached her and told her why I was there. Afterwards, I helped her take her materials back to her car and we chatted there as well. She had two sons like me and they were close in age as well and one of her sons had autism.

I thanked her and she told me to call her if I needed any help.
As the weeks went by, I did not feel as confident as I should going into the first IEP meeting for Xavier,
I called Jenness up and asked if she would attend it with me and she agreed.

The meeting WENT South REAL FAST ..
First, I didn't realize that unlike Harwood, public school do not have the budget, staff, nor time to give Xavier the individualized care he had received and I had come to enjoy and could see progress with at Harwood.

Needless to say, I went " MAD BLACK MOMMA" FAST . They were willing to DO ANYTHING for him it seemed...

When I finally got into a yelling match with the Curriculum Coordinator when she said Xavier,who had NO language at the time,would have to attend a GROUP speech session once a week. Before I knew it I was like "Are you crazy, lady". Jenness, in her calm voice asked if we could take a break and we stepped outside.

Ok, let me be clear, I was seriously about to catch a case here yall.. LOL ! My blood was boiling!
But Jenness reminded me that the IEP meeting was not the end. She reminded me of the laws. That I didn't have to sign anything today that I did not agree with, but most of all I HAD TO CALM DOWN.
 
Once I was able to regain my composure, we went back into the meeting. I didn't get what I wanted that day, but with her help, Xavier got all the services he needed.

Her kind, comforting words that day started me on a path, where I would eventually have the privilege to work under her and with the entire STEP team.
There were many days in my work at STEP that I would attend an IEP meeting with a parent and like Jenness I would have to ask for a break and I reminded myself that I was in their shoes once. By the time she finished with me I had gained the nickname " The Mary Poppins of IEP meetings".. thanks to Staff member Steven Glowicki ......LOL!
 
STEP, Inc is what is commonly called a PTI (Parent Training Institute) there is one like it in every state,
The one for Georgia is called Parent to Parent and I have had the privilege of working there as well.
 PTI offer free training and guidance to parents who have special needs children. They are all funded through IDEA

Through working for STEP, my knowledge grew tenfold. I meet other mothers like Karen Harrison, Laurel Ryan, and Juwanda Mast who were not only getting the information that would help their own children, but passing it along to help others. The staff at STEP were more like family as many of the employees were parents of special needs children. It was during the time I worked here that I decided that I wanted to be a counselor with a specialty in counseling parents of children with special needs.
My love for sharing in the joys, heartaches and pains of parents on this special journey will never die.

Thank God I for the person whom has been nicknamed the "Goddess" and all of those mothers and staff members of PTI's.

Just felt it was so appropriate for my Blog

Saturday, August 25th
Good morning Kimberly,
Here's Today's Devotional from The Vine...
The Joy Set Before Him
It came to pass, when the days were near that he should be taken up, he intently set his face to go to Jerusalem. - Luke 9:51
There were many great and painful steps that Jesus needed to take before He could reach this blessed hour and be received into glory. The immediate future was full of struggle, loss, and pain. Jesus was able to see the splendor of heaven with its opening gates and its welcome home, but before His feet could enter Heaven He needed to pass through a large battlefield full of enemies. There were days of toil and nights of loneliness. Finally He would pass through Gethsemane's gloom, and all that led to Calvary. He must die and go into the grave. All this before He could be received up.
However, He did not think of any of these painful steps. He did not let His eye rest on the shadows that lay in the valley, but lifted it up to the mountain-top beyond, where the splendors of heaven blazed. Keeping His thoughts on His heavenly home that waited when He had ended the journey, He forgot the toils and the tears and didn't lose hope.
This is a wonderful secret which all of us ought to learn. We should not to think so much about the toil and hardness of our journey, but to look beyond to the "light at the end of the tunnel". Many of us go through life worrying and keep our eyes looking gloomily down on the path we are treading. We see all the troubles, difficulties and discouragement, but we never raise our eyes to see the joy, hope and blessings that wait for us. We ought to learn this life-secret which made Christ forget the shame and sorrow of His cross and see only the glory beyond. Learn to look up toward heaven.

Inspirations

Like I said before other people have been placed in my life to help me along my autism journey.

Xavier got to spend 6 glorious months at Harwood.

During that time, we had ABA therapy at out home, speech and language therapy and he made some significant gains.
I also learned EVERYTHING I could about what he would need.
Most of all,

I found that his tantrums were mainly because he realized he could no longer speak.
Since he and Jordan are only 17 months apart, he was watching Jordan communicate with me and everyone around him and was frustrated because he could not. Could you imagine how he was feeling?

Most of Xavier's behavior issues today are still due to his inability to speak. I am really considering teaching him sign language again, this time more intensely.


His speech therapist immediately taught him sign language for a few basics things.
Mainly for how to request items and to ask for food, drink and to ask for more.
He seemed to really catch on and some of his anxiety went away.


The Speech Therapist sent on daily note sheets to let me know what he worked on and what to work on with him at home.
I will never forget the day his speech therapist wrote in BIG Letters on his Daily Sheet " HE CAN TALK!"
I was motionless, I looked at him and he looked at me as he always odes with big eyes as if to say "what?"

Then I tried it, I did the sign for "drink" and he said it!  I cried. It had been sooo long since I had heard his voice. I had not realized he had lost ALL of his language before. SO that was it, I began forcing him to talk from that day forward.

He still doesn't talk much, but I can say God has made it such that Xavier is VERY expressive. I can almost always tell what he is feeling, just by looking at him and I praise God for that...

Now on to where my help came from!

Cassandra Sisk was over Xaviers' ABA therapy at Harwood. She had a student from the University of Memphis that was interning with her named Sherita and together they became Xavier's first ABA team.  Sherita reminded me of an older version of my niece Cierra so she and I hit it off great and she spent a lot of time at our home.
ABA therapy was BAD at first. Xavier would slap, kick and hit Cassandra and she would remain stoic and continued telling him to do things until he complied.
The rule was that once they took him in the playroom there was a table and chair he was to sit in and under NO circumstances could I open the door.. sounds simple, but when you hear your child screaming to the top of his lungs, IT IS VERY HARD TO DO.

I had a video baby monitor I got at Xavier's baby shower from my brother and his wife and Mark and I decided to put the camera in the room and hook it up to the TV in the den so we could See what was going on in the room and Cassandra humored us.

Many days I watched as what seemed like endless requests to do simple things like stand up, sit down, wave and when he didn't do it they would physically guide him, whether he liked it or not. He cried, screamed, and did what he could to get out of it. Even yelled one day to " Open Door" .. and I was thrilled...
But that is the way Xavier learned so many things, his colors, his body parts, to complete simple tasks.
Harwood Center and the staff gave Xavier a good start. The teachers were caring and loving and the staff was knowledgeable and supportive.. But Xavier aged out in 6 months and we had to go into the school system or " transition" as they call it.. or for me more like persecution...
But as he promised God sent me help.. once again ..but  this time he sent me a 'Goddess"..:-)