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.



 

Finally able to BLOG again!

I am so happy to finally be able to blog again today!!!  It is cold and I have a head cold, so since my plans for a good walk/jog have been scratched for now, I figured the time I was going to use for that I would put out a new blog post..;-)

So excited that I cant think of a topic so I will go back a month or so and honor my oldest Jordan who turned 13 on November 9th and became an official teenager.

So I will talk about siblings:

I guess I will always feel guilty about not having more children. I sometimes feel Jordan has gotten the short end of the stick when it comes to siblings, since Xavier has special needs.
I would have loved, loved to have had more kids, if there was a way they could come to me without me being pregnant!
Sorry ladies, I HATE being pregnant, aint NOTHING fun about it.
I love kids, but I sure wish I could just lay an egg to get them.. LOL !

Really, Jordan was going to be an only child. I was thinking I would get him socialized early with other children so he wouldn't have the "only child syndrome" ( which I don't buy into anyway) and then Mark and I would get a dog.
But I guess God didn't agree with me.

Since Jordan and Xavier are so close in age, early on, Jordan didn't notice the deficits Xavier had. Many times I would ask him when they were toddlers if Xavier "talked" to him and he would say "yes" and give me a look as if I was crazy..
 But looking back if you are 3 years old and your brother is 19 months old, neither of you are "really" talking much, so for the most part I guess as long as Xavier was following along with what Jordan was doing he "felt " as though they " talked "to each other.

The first time I realized Jordan knew something was wrong with Xavier was one day when he was screaming for me to come look! 
There they were in the hallway and Xavier had walked up and Hugged Jordan.
Jordan screamed " He loves me!!!" and my heart broke for him and yet I felt hope for them and their relationship as brothers.
I explained to Jordan that Xavier does love him, but we will have to teach him how to hug, kiss us etc and show it to us because he has special needs.. From that first hug, they have been hugging each other ever since and I thank God for that.

I cant think of how many times I have said "special needs" to Jordan. But for the most part he treats Xavier like he would if he were a neurotypical brother. He wrestles him, aggravates him and I do believe he has beaten Xavier up before because Xavier NEVER challenges Jordan when he tells him to do something.. LOL!
I figure he has asserted that he is the BIG brother somehow, I just may never know what he did....
But hey, Xavier is the baby brother he gotta take lumps, Autism or not... LOL!

 As the boys have gotten older, the difference in their abilities became more apparent to Jordan.

Many times because we didn't have childcare for Xavier or lots of family support,  if we wanted to go to an activity or even eat out because there was so much Xavier could not eat, we had to pass as family.
One day when we wanted to get some ice cream and Mark and I decided to pass because Xavier cant have milk, Jordan made a comment that hit me like a hammer!  He said "One for all and all for one , so since Xavier cant have it we wont go"...The way he said it was like he REALLY wanted to go..

So I told him from that day on, if  HE could go either I or Daddy would take him.
So Mark and I agreed that Jordan needed some " JUST JORDAN " times.
Jordan started activities that only focused on him, his baseball, basketball, special things at school.
Even if one of us had to stay home with Xavier so Jordan could have the focus "only on him" and not Xavier's behavior issues or food needs, etc, we wanted to be sure he knew his mom and dad had time " just for him".
I think that has helped Jordan not resent Xavier. He is more than willing to help with him, but I am very careful not to make Xavier a " burden" to him and make him more of a companion as well.

 Boys at Xavier's Bday Dinner

 Boys at Spring Break trip to Chattanooga Aquarium..

When Xavier needs help, Jordan will step up and help him, but if I see him getting frustrated I step in. Here is Jordan giving Xavier some big brother encouragement on the first day of school this year.

Even though Xavier does not have much language he understands most of what is said to him and I also thank God for that!
In the future I am hoping to have put in enough work on Xavier so that he can live alone or in a group type situation.
I want Xavier to be as independent as possible. Not just for his own quality of life, but so that Jordan wont feel so burdened down with him.
Yet, I know if he needs help Jordan will be there to help him.

One day last year as I was cooking, Jordan was talking to me about Xavier and I was shocked that he had already made it up in his mind what he will do with Xavier when they are adults.

Jordan wants to be an Architect and he said he will build a wing onto his home for Xavier or make a Guesthouse for him.
He said because of genetics he wont marry a lady who has autism in her family, but thinks it would be great to marry a Special Ed teacher because they will accept and understand Xavier more.

I was so shocked that all this came from an 12 year old..
That he had thought to include Xavier in his life as an adult and that he had made so many decisions for his life based on how his actions would affect Xavier.......But I am thanking GOD that he did..

Autism Insurance Coverage for GA

http://www.youtube.com/watch?v=1SNhXZWdL_E

When I saw this I thank God that Xavier had Harwood Center in Memphis and Mrs Lynn Shields at Bartlett Elementary.  As well as Leronda Gosset who was Xaviers ABA therapist.
Shelby County Schools had a program where they would reimburse for ABA but it was hard to get..
I would like to know how much this lady paid to have ABA for her daughter.

The Next Place I go...

Its been a minute since I last posted. I have been so busy with so many things. I have a few drafts that I have not been able to finish..LOL!

So much has been going on that by the time I get to my computer to blog I am falling asleep.!

I have finally got Xavier's stomach yeast under control, his meds on track and he has been back on track with his behavior for the most part at school.
Hopefully, if it is Gods will I will have my mom with me next month and Xavier has a new Para pro in his classroom that has really helped him.
 Its a guy and he is 6ft 5in and 260 pounds!
I am sure Xavier " walks the line" with this guy because he is the SAME size as his Daddy!  LOL !
 Cant wait to meet him at my next IEP meeting...;-)

Also, the Lord has put it on my heart to open an "in home" after school care and respite for children who have autism and I am now on track to start the training, licensing and other stuff in order to get that in place and up and running..
Looking for a larger home to house this business as well....:-)

But hey, if the Lord leads me to it, he will bring me through it.. so I am excited and hubby is excited as well..

Hope to have a grand opening of ......Trent and Trent, Aftercare and Respite, LPC very soon...;-)

I had to take the time to blog today because I wanted remember my dad today as today marks the one year anniversary of my fathers death.

Normally I would not mention this as I don't want the one moment of death to overshadow the LIFE my father lived, but
I felt compelled to mention it because my father and Xavier's relationship went through a major change once my dad found out Xavier had autism.

Also, many people do not know that when I would get down about Xavier's autism or felt like I was stuck in a rut with him, I could always call my dad and he would tell me how proud he was of Mark and I and how we have handled Xavier and have always worked as a team to help him.
He would always remind me that I am giving my boys what I did not have " a mother and father in the home'' and how just doing that was an achievement in itself.

But, it was not always like that.
Before we knew Xavier had autism, Daddy thought he was just bad and spoiled..
When we came by to visit, he thought that when we told Xavier not to touch something and he did it anyway, it was because he was hard headed and not that he was not understanding " facial expressions or social cues"..
Many times, he would go get his belt and tap Xavier on his rear when he touched something he wasn't supposed to have and would keep the belt with him while we were at his house.
I was always careful to watch Xavier as I did not want him to get a famous " Willie James" ass-whipping.. as I dont think he or Jordan could survive that...

When we found out Xavier had autism, I didn't tell anyone right away, mainly because I didn't know exactly what it was.I was ashamed and I blamed myself.
 But when I told my Father he was very upset and worried for me.
But he told me that if anyone could raise a child with special needs , he knew I could and that alone gave me strength.

I don't think Daddy realized at first that although Xavier was not interactive as Jordan was with him, he understood what was going on and was very much in tune with his surroundings and has a very good memory.

 I think he found out the hard way when one day he called the house to talk to the boys when they were about 5 and 4 years old  and after talking with Jordan he asked to speak to Xavier.
But when Xavier heard his voice on the phone, he yelled " BELT" and ran away...

 My dad didn't say it, but I knew he was hurt by it..

From that day forward I saw my Dad's demeanor and relationship with Xavier change.

My father made an effort to always " play and interact "with Xavier as much as he would allow every time he saw him.
He soon found out that unlike most children with Autism was not "Sensory sensitive" but he was "sensory seeking" and loved to be grabbed," roughhoused" and tickled by him.

Many times Xavier would purposely go to my Dad so that he could wrestle and tickle him. and the "belt toting" Grandaddy became Grandaddy Billy, the " tickler...;-)

When my father died, I was concerned for both my sons.
 Neither of them had been to a funeral, let alone for someone they had loved and was close to.

I was worried that Xavier would not understand  the funeral itself , that the crowds of people and the noise would upset him as well to see others crying and upset and I would have to take him out.

I tried to explain it to him as best I could the days before, but when time came for my fathers wake and funeral, I was still not sure he knew what was going on.
We decided not to ride in the funeral car, in case Xavier melted and I needed to leave with him and both my brothers decided not to do so as well so that I wouldn't stand out as not riding with the rest of  family.

It was my job to find a tie for my father to wear and when it came time to take it to the funeral home, we were able to view and sit with my dad a few minutes before we left to go get dressed before the wake started.

 As we stood looking at my dad after his tie had been chosen and put on, I asked Xavier who he was he answered " Grandaddy" .
When Mark asked him what was he doing. Xavier replied " sleeping".....

He did well as to be expected at the Wake with people walking in and out, lots of talking and laughter, crying and hugging, but in the end he got overwhelmed and Mark took him out to the car, so I would be able to continue to mingle with family and friends.

The next day Mark and I decided that if he got upset during the funeral Mark would take him out to the car and allow me to remain inside for the service.

Surprisingly, Xavier remained TOTALLY  silent during Daddy's entire funeral. I thank God that the few times I felt compelled to cry it was in Thanksgiving as most times Xavier picks up on my mood and I was afraid he would pick up on the fact that I was dying inside and become upset. 
But, during the funeral, he never made a sound, not even one of his little " autism" noises.. He was attentive and never took his eyes off the casket that was in front and when I looked at him, the look in his eyes told me HE UNDERSTOOD.

He knew that Daddy was not just "Sleeping" although that is what he had told us the day before and I knew he understood that this was the last time he would see " Grandaddy Billy" as he and Jordan called him.

He continued to remain silent during the car ride to the burial and although Mark and I tried kidding around with the boys to lighten the mood in the car on the way , Xavier's demeanor remained quiet as he watched all the cars line up and drive off..

When the burial ceremony was over and after everyone had left their seats and started to hug, take pics, and walk back to their cars to go to the repast, Mark and I noticed Xavier moved to a front seat in front of Daddy's casket that was already partially lowered and just sat there. Mark offered him a lollipop and we finally saw a smile..

As I walked away and talked to family and friends.. I heard someone yell and realized that Xavier had laid on top of  Daddy's casket as if to hug it.. Mark went over and got him and Xavier walked to the car with him. While everyone talked about how this "little bad boy" had climbed on top of the casket or what would possess him to do so.. ......

I smiled inside because I knew That was Xavier's way of saying goodbye and getting one last hug and tickle from Grandaddy..
That he had forgotten "Belt toting" Grandaddy and remembered the one that gave big hugs and rough housed and tickled him on demand .

After we got home, I noticed Xavier started carrying a book I had bought for him months before.
He loves to "visually stim" on items and sometimes when its a book and is cheap, I admit I just buy it to get out of the store in peace.....LOL!

Usually once he gets it home and holds onto it for a few days he just looses interest like most kids do with toys, but for some reason he had started back carrying this one everywhere he went.

 I decided to make him play " appropriately" with it and sat to read it to him"
As I did, the tears started to run down my face as I realized my baby was hurt and this book comforted him.

Its called " THE NEXT PLACE ", by Warren Hanson..
I had not realized it when I bought it for him, but it is a beautiful way for a child to understand dying and heaven..
It has beautiful pictures and describes heaven in a way, that makes a child not fear death, but look at it as a place they can look forward to going..

I noticed he had it today in the car on the way to Nana's after church and it made me SMILE..

Today at church, Brother Giddens sermon was entitled " Why God allows us to suffer" .

He spoke about how everything bad that happens to us, God makes it for our good and that Suffering , brings Perseverance and Perseverance, Character and Character brings .......Hope.

So as I hurt for my father today, I can still thank my heavenly father for the time I had with him.

I can thank him for all the GOOD that has come to me from my fathers life and death.

I thank my heavenly father for the faith that has been built in me and today I add that I am thankful that through my fathers death, I was able to experience another dimension of my son. ....

As I sat on the sofa to type this blog post, Xavier sat on the other end, watching TV and his book in front of him on the ottoman...

Maybe I will read it to him again tonight, since it has been a year since we last read it together.
.I am not sure if he knows what today is, but I am glad the Lord sees fit to comfort me in this way..

In Loving Memory of  

Willie James " Grandaddy Billy" Johnson

 April 10, 1945 - October 14, 2011.

The Smallest Things, Mean Alot

Just like the smallest things like giving Xavier something for yeast can calm him, the smallest things can set him off.

Today is Community Skills at school. It is when the staff takes the class out into the Community to teach them to shop, count money, and try to establish some self help skills they will need later in life if they have the ability to live on their own.

Xavier has not been going on Community Skills this year due to his aggressive behavior, so today he will be staying back at school.

Yeah, I know, they cant do that by law, but considering how extreme he has been acting this year, I am ok with him hanging out at school especially since he gets more than enough Community Skills at home...
I like to shop and yes, most times I drag Xavier along with me.
That boy can unload groceries from a trunk twice as fast as his big brother and is a very good cart driver..;-)
That is when he is not trying to hop on the back and take a ride or slide down the aisle, but what kid/preteen doesn't do that..?

So today, Xavier is all cool, until he realizes that not only will he stay back from Community Skills, but it is also picture day.

So most people that know me, know I love, love taking pics of my boys..
Hey they are my babies and plus I think they are so handsome, but I am biased right?

Also, unlike a lot of children with Autism, Xavier takes pictures pretty well.  He did better when he was younger, but I think now that he has gotten older, he is not real sure how to smile and kinda fakes it more, than when he was younger and just tickled..

More so, I used my camera and a mirror early on with Xavier to get him to make "EYE CONTACT" with me.
He loved lights and the flash on the camera always got his attention.
I would also stand him on my bathroom sink and point to the "boy" in the mirror and that would also catch his eye.
Not sure when but later on he started to realize the boy was moving " in sync"  with him in the mirror  was his own reflection, thus began his now obsession with Mirrors.. ( and most people think he is just vain) as he cant walk past one today without looking at himself! LOL !

So today after he gets  dressed, I realize his school picture day is today and not on the 10th as I had thought! YIKES!!

So I am trying to get Xavier to wear something different to school for pictures.. I knew this would be a task because usually I gradually change his clothing for school as the seasons start to change.

We start off in Shorts and T shirts or short sleeve polo's
Then we go to long pants (sweats) and short sleeve polo's and t shirt
or shorts and a long sleeved t-shirt.
Next we go to both long pants (sweats) or jeans and long sleeve shirts.
Then we had a windbreaker or light jacket and then on
to sweats and a real coat ( by then it is November or December )
Yes, I have to be that methodical with it....
THAT'S AUTISM..

Please don't ask what I have to do to get him to wear a new pair of shoes!  I literally hide the old ones!! and that is just the beginning..

A few weeks ago when all of sudden it got cooler too soon, I had him put on a pair of jeans instead of his normal shorts and t-shirt and got a call from school an hour later saying that he was standing in the Sensory room in his undies asking for another pair of pants...!!!
Yall remember that? That was the day I took him home...

So here we are , he in his khaki Izod shorts and T shirt and me trying to figure out how I can dress this up a little.... I start bringing down long sleeve T's to see if maybe I can match something to his Camouflage sneakers ..?
I am asking him to try them on and his only response is "NO" ..

So I am bribing him with Gorilla Munch Cereal and he is still not going there.

Finally he agrees to put on a vest he wore for recent Family pics over the t-shirt and at least looks like he is going to play golf..
I am content because he didnt have a major melt down and I think he is just happy I am about to leave him alone.

Lets just hope he remembers to Smile...;-)

Caretaker Crash...

Haven't had time to really blog like I want to and was looking into some information on having a blog on Google and who actually "owns" my blog... 

Some people have been saying that when you create a blog on Google, they have ownership rights to what you say and post. I guess that's a bummer if they don't like what you are saying as well as if they decide to shut you down...

 Still looking into the details on that but in the meantime, The show must go on....

If you have ever cared for someone who is seriously or chronically ill, chances are you have experienced "Caretakers Syndrome".
                        I call it " Caretaker Crash"


Ehow.com lists Caretakers Syndrome as the emotional and physical stress from taking care of a seriously ill person for whom there is a strong bond of love or friendship.

http://www.ehow.com/facts_5489774_caretakers-syndrome.html

Symptoms

• Caretakers experience physical, emotional and psychological exhaustion; listlessness; a need for diversion; and a growing wish to be someplace else
  

Stages

• "The Caregiver Survival Series" by James R. Sherman, Ph.D., lists three stages that can evolve from syndrome to burnout. Frustration stems from not seeing enough progress toward recovery; Depression includes prolonged periods of helplessness, loss of concentration and control; and Despair leads to hopelessness and resentment.
  

Consequences

• Studies by Harvard Medical School and University of Pennsylvania suggest healthy spouses faced greater risk of death themselves as a result of the fear and strain from beloved partners' illnesses.
  

Considerations

• Ease a caregiver's physical burden with home nursing services and housekeeping help. A support group encourages talking, sharing and learning with others.
  

Self-Care

• If you're experiencing Caretakers Syndrome, you may find it helpful to write out feelings in a journal. Set positive goals, such as renewing a hobby or visiting the library, and get out and exercise with a daily walk.
  

Read more: Caretakers Syndrome | eHow.com http://www.ehow.com/facts_5489774_caretakers-syndrome.html#ixzz27jXqqeYR

I have Caretakers Syndrome. 

In addition to caring for Xavier, I also have to care for my mother who has lived in an assisted living facility for the past 7 years in Camden, TN.  

 

During the last few weeks while I was trying to figure out what in the world was going on with Xavier as his aggressive behavior became worse..

 

I have also been in the midst of getting my mother moved to Chattanooga to have her closer to me.

Since Xavier has been diagnosed with Autism , I have had to entrust most of her care to someone else.

But the Lord has been good in that he has taken up the burden for me. Her care has been good, but now that my father has passed away, and my mother suffered a stroke last May, I feel as if her being 6 hours away from me would only cause me to worry about her more.

So yes, I have double duty with a child with special needs on one end and a disabled parent on the other.

 

I had my Caretaker Syndrome diagnosed by a professional when I had a panic attack a few years back.

 

My fathers cancer had made him very ill.  He was in the hospital in Memphis with his kidneys failing and I was 6 hours away and couldn't come to him.

Xavier was having a very hard time adjusting to being in Georgia, a new school, new home, new bedroom. everything new! Jordan just wanted to go back to be with his friends and was lonesome.

Them my mom had a stroke the week before I was to visit her for Mothers Day and I could not leave because Mark couldn't get off work and as usual I had no one to care for the boys.. Needless to say I FELT HELPLESS.

I was home alone. I had taken off work that day in case the hospital called to tell me I needed to head to my mom. I had already told Mark if they did call,  I would check the boys out of school and take them with me and deal with Xavier the best I could..

.

..I was standing in my kitchen and all of a sudden I could not catch my breath. 

 

I had felt a similar feeling before .. Before I was an old fat mommy, I used to run..(smile)

 

My first year a Christian Brothers College, I was introduced to the " BUC Mile" by my gym coach and I was hooked.

Running was FREEING, It was the best way to relax to me..

 

When I first began to run.. I learned that sometimes when you run, if you are not breathing properly you will start to feel as though you cant breathe at all.

When this happens, you should concentrate on breathing in through your nose and out through your mouth to get oxygen to your brain and body...and soon the feeling will pass. Until I learned to breath properly.. this feeling would always alert me that I was holding my breathe or breathing with my mouth open....;-)

This feeling was like that .....but more intense...

It was as if I had been running and could not get any air in my lungs. 

But when I tried to take a deep breath, someone was standing in my chest..!!!!.

I thought I was having a heart attack. .. Just when I was about to go into full panic, I calmed myself and the feeling passed. 

But in the next few days , the feeling would come back several times. 

I finally went to see a doctor who told me I was having panic attacks.

Since then I have slowly made some changes to be sure I do not allow my type A personality to cause me to stretch myself too thin.

I now try to sleep well. 

Although I normally function on about 5-6 hours of sleep a night. I make myself sleep late on Saturdays and try to pray each morning before I get out of bed and each night before bed. I keep a journal and now I blog...;-)

I have a good friend in my BFF, Toby that I can vent to and my hubby is a very good supporter and help as well.

 

I try to live by the Serenity Prayer and when things get too much " I let Go and LET GOD"

I admit that is SOOO hard to to sometimes. Especially when you are impatient human as I am or just like to "fix" things.

 I am still learning to take one thing at a time.. and to let some things go altogether.

 I am learning that some things I cant change, are not worth getting upset over and not worth loosing precious time and energy on. I am learning to focus on the GOOD I can do and not the bad that happens.

I have also started back running. Since I have Waaaay less time and energy than I had when I first took it up, I admit it is taking me a longer time to get where I want to be.

But I have to remember the race is not given to the swift, but to those that endure..

So I know I will get there ...

Most of all, I try to always remember if I don't take care of ME, I cant take care of anyone else.

 

 Ecclesiastes 9:11

New Living Translation (©2007)
I have observed something else under the sun. The fastest runner doesn't always win the race, and the strongest warrior doesn't always win the battle. The wise sometimes go hungry, and the skillful are not necessarily wealthy. And those who are educated don't always lead successful lives. It is all decided by chance, by being in the right place at the right time.

Wait on Him

Psalm 27:14

King James Version (KJV)

¹⁴ Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord.

I once took a ladies class at church a few years back at Sycamore View COC and afterwards I realized I needed to work on my patience....;-(

I looked around for something I could read and found a book called " You're Late again Lord"   The Impatient Woman's guide To Gods Timing"...By Karen Goodman.

I love, love to read, when I have the time now of course, and this book SPOKE DIRECTLY to me..

I am not patient person by a long shot, and at the time I read this book I was at wits end.. 

My marriage was a mess, I was wading through Xavier's new Autism diagnosis and sinking. Mark was not working and I was like OK God when are you coming to help me! 

Back then, I had no idea HOW to Wait on the Lord" . I had no idea what I was supposed to do while I am waiting.
This book hit the nail on the head for me and I have used it when I am in  "The Waiting Room" of life ever since.

So now when I have a day at home like the one I had with Xavier on yesterday, I know I am in " The waiting room" and just say  " Ok, Lord, I am waiting on you" 
I have learned to " be quiet" sit still and wait on him to tell me what to do..

Since I do not like being idle ( Type A ) personality..

 I did laundry, cleaned the kitchen, blogged and watched TV in between. All the while Xavier slept.

I had texted Xavier's teacher and told her I think he has been eating too many eggs as he has been sensitive to them in the past.
She texted me back and said lets keep track of everything Xavier eats and drinks and how it affects his behavior  ..

I was like " Oh NO! ....I did that when he first got diagnosed and had multiple gut issues and it aint no fun!"  I went nuts, if I missed something I panicked and I did not want to have to do that ever again.
But, instead I didn't reply and just began to think while I sat and folded towels..

I tried to replay the last view days in my mind, mainly to see if maybe Xavier got some milk or wheat to trigger his overly aggressive behavior.

 I started thinking about Sunday, the message Brother Barclay spoke on while continuing his series on the Omniscience of God.
He spoke about how we as humans could not handle it if we knew everything that would happen to us, what was said about us, what things would be done to us.... But we should just trust God who knows everything.  
That God knows, what could have been, the what if and what will happen in the end.

He used the example of Jesus telling Peter how he would betray him and deny him three times and the rooster would crow when he did.
Bro Barclay,  brought it to our attention that Jesus knew what Peter would do to him as he addressed him by his OLD name Simon to indicate that he would go back to his (BB) Days.. I call that BB: Before baptism..( its when I act up yall..LOL) 
Jesus told Peter he knew the outcome and would pray for him. 

Bro B also made note that Jesus said the " Devil had asked permission to sift Peter".. meaning when you go thru something , know the devil has asked permission from God to mess with you and God wont let anything happen to you do bring you to destruction, so you can rest assure " everything will work for good for those who love the Lord".

Then he went into a part of the scripture when Peter actually denies Jesus  and this was when my word came from the Lord and I missed it on Sunday. I guess I was just so happy I had solved the problem of Xavier wanting to go to the bible hour classroom, I missed my shout..! as Bro B would say...
                    But, I am thanking God today for Second chances...

Bro B. talked about how back then people used Charcoal fires to warm themselves and in John 18:25 it is mentioned that the first time Peter denied Jesus he was standing by a fire warming himself.  It is during verses 25-27, Peter does what Jesus said he would do and denies Jesus three times.

Then he went to John 21 when Jesus appeared for the 3rd time to the disciples after his resurrection. This time they were fishing.
In John 21:9 it is mentioned that when the disciples came to shore  Jesus had built a charcoal fire and had prepared food.
It is then that Jesus asked Peter three times in a row to confirm his love for him.

Bro B, asked us if we have ever had a certain smell, remind us of something..
I have so many times.. The smell of my dad cooking fried chicken, pinto beans and hot water cornbread.. ( Y'all don't know nothing bout that... LOL !)  
The smell of roses Mark has brought home for me. 
The way Jordan and Xavier would smell after a good bath as babies.

Bro B said Jesus built that fire to use the smell to "remind" Peter of what he had done and yet still offered him a second chance at showing his love for him. 

Anyone that has known me for a long time knows that I used to have a cat. 
His name was Simon- Peter and I called him Simon for short.
 He was my reminder that God gives second chances. Funny huh?

I was replaying the days before in my mind ..

How on Sunday evening as we sometimes do, Mark and I talked about the sermon.
 I asked Mark how he thought it applied to his life and we talked.. 
I said I felt for me I have noticed in my life when God puts me in situations and I do not please him in my actions, he continues to put me in that SAME situation again and again until I DO WHAT will please him and them I am allowed to move on.
Mark went on to say how it reminded him of when he cooked good grilled meat on his grill and it has that good charcoal flavor and as he went on and on... he finally looked over at me and I was giving him a " You just greedy" look and he busted out laughing..

Then the Phone rang.. It was my Gynecologist office.. I had gone to get my annual pap this past Friday and was supposed to log into a database on line to view my pap results, set up to have my blood work done and to set an appt for my first mammogram.. 
But, with all the stuff going on with Xavier, I had totally forgotten!  

My maternal grandmother died of late stage cervical cancer and my mom caught her in stage 1 in her early sixties. So I am very diligent about getting my paps done every year. This year I am embarrassed to say I an about 8 months late..

The nurse on the other line, sounded cherry, I was thinking that was a good sign and  then she said, " You haven't logged online yet have you and I told her no.

She told me my Pap was normal, but that I had a yeast infection.. 
I was like " huh?" I know what the dreaded ' "coochie cootie"s felt like and although it had been a long time since I had one,,
 I knew I was not having any symptoms and told her so.

Then she said its not the normal kind, this kind starts in your tummy and spreads. So we will call in a different med than is used to normally treat it.  We have your pharmacy number on file and I will call  and order it for you. She told me to have a great weekend.. 

I hung up and said to myself , " Well this day is just going grrreeeeettttt! "

Then I was thinking to myself..How did this happen.
 Most things we eat in our house are Gluten free.
But this Summer I admit we have ran wild.
 I let the boys eat whatever they wanted, when they wanted.
Hey, They are kids, they gotta live sometimes...

Then it HIT ME LIKE A TON OF BRICKS.
This morning Mark and Jordan left early because Jordan has Pep Band practice at 7:45 so Mark drops him off on the way to work, so Jordan doesn't wake Xavier for school on Thursdays, I do.
But, when I went in to wake him at the normal time, His room smelled horrible! 

Now I live in the house with three guys and I have smelled it all , socks, gym clothes, food left in the lunch pail,  the works.! 

I remembered when I woke Xavier up I was like you smell bad, go to the shower now!  

I was in a rush, but noticed Xavier was having " leaky gut" as he got in the shower.

Some doctors argue that this is not a symptom of Autism, but remember me telling you earlier that your gut or digestive tract is 80 percent of your immunity?
To explain Leaky Gut in Autism here is a link: http://en.wikipedia.org/wiki/Leaky_gut_syndrome

When Xavier was first diagnosed he has leaky gut BAD. He was having the runs so bad his little butt was raw all the time and whenever I would wipe it the skin would literally come off of it. 
He was miserable and I could not figure out what was going on.

I took him to a DAN dr who put him on a GFCF diet and it started to clear up, but not until I treated him for intestinal yeast, did he become able to finally have solid stools. 

To this day, Xavier withholds stools, because he went so long without having a normal one, he does not like the sensation of passing them. 

It got so bad when we first moved here, we had to take him back to Tennessee to Vanderbilt and he had to be put to sleep for two hours while our pediatric gastroenterologist flushed his small intestines as they were impacted so badly, he was about to poison himself. 
The Dr said he had only seen that condition in the very elderly.

But then I remembered how Xavier would behave when he had yeast. he would ask for sugar filled things to eat ( sugar feeds yeast) 

The day before, after his Drs appt he asked to go to Sonic for "" Green juice" please, that means Green apple slush.
He had been sniffing so badly in the Dr office from allergies, she asked if I wanted a prescription for it. 
I had not realized at the time, his immune system was not fighting off his allergies as well as it normally does..
He had been asking for marshmallows since he had gotten home.

Xavier will eat sweets, but like Mark, he can take them or leave them. 
They are both Meat and Potato type guys.
Jordan and I on the other hand will fight to the death for the last piece of cake in the house... LOL !

But most of all Xavier would be aggressive, like none other..and his stools, I am telling ya would smell like something off of a horror show!
He would be constipated and yet have stools leaking his impactment. 
He would also scratch his butt, because ladies we all know yeast itches..;-(

                                      and that was it!

When  he woke up I had already found the medicine I had used to treat him in the fridge.
He came over and asked for kettle corn and I offered him a hot dog instead.
Thirty minutes afterwards on a empty stomach I gave him a dose.
Not 10 minutes he went and I knew I was headed in the right direction..;-)

I gave him one more dose before bed last night and will monitor his sugar intake for the next couple of weeks as well as give him a dose of Candida Freedom every once and a while as maintenance... 

He started off the school day rough, but his teacher said she was not sending him home because she knows Xavier understands her expectations and she didn't want him to think if he misbehaves he will get off easy and get to go home.. She is SUCH A WONDERFUL teacher.. I will cover " Good teacher, BAD teacher" shortly. But as far a teachers goes, she is one of the best Xavier has ever had. I am going to miss her like crazy when he goes to middle school next year.
For me,  I knew his bad early morning behavior was yeast "die off " from the last dose of med before bed last night.

He recouped and did well for the remainder of the day and I am thanking Bro B for reminding me of  "smells" and God for giving me a second chance to catch on..

And yes, I am taking my medicine and watching my sugar intake  too..;-)