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"..:-)

In the Beginning

In the beginning of my Autism journey, a day like today would have sent me into a frenzy!
My whole YEAR would be ruined! LOL !

But since I have faced many days WAAAAY worse than this one, I know this too shall pass and know that if God doesn't calm the storm , he WILL INDEED calm me., but ONLY  if I let him....;-)

Like I mentioned before God have sent so many people in my life to help me along this Autism Odyssey.  Let me tell you about a few..

After Xavier's initial diagnosis, I was frantic to find out what Autism was and how I could get rid of it! LOL !
I immediately starting looking on the Internet and for the most part most things I saw were very scary.

Rain Man, remember that movie? Dustin Hoffman and Tom Cruise were brothers and Dustin had autism and could remember all sorts of numbers and stuff and Tom used him to gamble.. I thought to myself ....WTH?  At least my dad who loved to gamble would surely LOVE Xavier.. LOL .. If he could only figure out how to get him inside of a casino...LOL!

But Autism is a "Spectrum disorder", meaning most people that have autism do not have the same symptoms. In fact, rarely do two people with autism have the exact same symptoms and that is what makes Autism so hard to treat and so hard to understand.

For the most part, doctors have broken the symptoms down to categories of Autism.
PPD/ NOS
Aspergers
Autism Moderate
Autism Severe

There are some symptoms that most people with Autism share and that is defect in social skills and repetitive behaviors.
Yet, some may lack language as Xavier does and some may talk like people with Aspergers.
Some may not interact with others at all, just sit and stare into space, others may be well aware of their surroundings and interact with it and others.
If I had to take a guess I would say Xavier falls somewhere in the middle of having Autism moderate on the spectrum, with his main symptoms being lack of language, lack of social skills and repetitive and problem behaviors.


My first stop on my Autism journey took me to a place called the Harwood Center in Memphis.  I wanted to know how Xavier would go to school, was he teachable and a host of other questions..
I spoke with a lady name Kay Guenther. She was a social worker and coordinator of the center.
I told her abut my diagnosis from the neurologist and asked her what services the center offered.
She told me what the center did and you can see that information here: http://harwoodcenter.org/.


 I asked if I could come by an take a tour and she obliged, but warned there was a waiting list to get in. so the next day Xavier and I went to your Harwood and it was nothing less than amazing.

After the tour Kay had me fill out paperwork to put Xavier on the waiting list and told me as the neurologist did to get an official diagnosis from a child psychiatrist. She took some back ground information on him and during the interview I began to cry. Just going back over the events of the previous weeks had over come me.

She reassured me that all would be ok, that I was not the first mom to cry in her office and that the fact I was there trying to get help for Xavier showed I was a good mom. We talked for a while and for the first time, I felt like maybe I could do this. Maybe I could be Xavier's mom and be good at it. Then she told me that since Xavier was 30 months at the time he would only get to attend for 6 months before he had to transition into regular public school at 3 years old. I was devastated, but figured even if I could only get him in for a short time, it would at least give me time to figure out what to do for him next.

We went home, I made an appointment with the Child Psychiatrist. He saw Xavier for 4 sessions before giving us his "official diagnosis of autism" . One thing he mentioned to us was that Xavier's personality was not one where he would ever be a big talker, He said even if he developed language later on, not to expect him to be the most talkative guy. At that point if he said ANYTHING I would be grateful. 

In the meantime I called Kay and the waiting list it seemed would not get to Xavier by his third birthday so it was a wash.
 I am sure she could hear the disappointment in my voice, but I thanked her for the tour and all she had done and hung up the phone.
I hung up the phone and I prayed and prayed and prayed... and about an hour later, Kay called. She asked me if I could start bringing Xavier to school the next week on Monday. She said she could not get him in everyday and three days a week was all she could offer me.  I told her he would be there EARLY... ;-)  I am not sure to this day what Kay did to help me, but years later when I brought Xavier back to visit I told her I had changed my major from Business/ Transportation to Social Work/Counseling. She tried to talk me out of it, said it can be heartbreaking sometimes and that I would never be rich doing it, but I told her if I can do half as much for someone as she has done for me, I would have more joy than money could buy.
Kay was the first of many people that God has placed in my path to help me carry my cross but Thank God she has not been the last..

Why Me, Why now?

I am a very private person so doing this blog is SOOO out of character for me.
So why do it? I don't want anyone feeling sorry for me. Please don't hold any candlelight vigils for me... LOL!!


I am doing this blog because I want mothers who are dealing with autism or have a child with a disability or any other issues and feel alone, isolated and hopeless to know that there are many others out there who are on the same journey.

 There is power in speaking up and speaking out. There is also hope.

I want to help others by being transparent as I can. So many times when one is going through a trail we HIDE. 

Many others on my journey have helped me by being honest, open and letting me know what may lie ahead on this road. They have shared their experiences, feelings, disappointments and trials all in hopes of helping me and I hope that by sharing my experiences someone who has gone through something similar or is gong through something right now will know that they are not alone and if I can make it though so can you..

But MOST OF ALL, I want to use my life and experiences in my trail, my thorn in the side, as a living testimony that GOD can bring you through anything, IF YOU LET HIM. His GRACE IS SUFFICIENT.....

Yet, if God brings you through something you could not make it through on your own he wants you to praise him PUBLICLY.
He wants you to tell somebody as to encourage them, if you wont do it, he said the rocks will do it for you.

But then if the rocks will cry out and praise him when you wont, why should he continue to bless you?