Thursday, September 27, 2012

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.

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.

Friday, September 21, 2012

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..;-)


 





 

Thursday, September 20, 2012

When you just dont know what to do..

Ok, since school started this year, Xavier's aggression have gone to an all time high.

We just went back to the doctor yesterday for the 4th time in a 6 weeks and he started taking his regular med on a different schedule that seemed to work great on yesterday, but today on my way to work I got a call to come pick him up from school.

When the call comes in I am driving to work and Mark has called from work to be sure his new blue tooth is working.. and I abruptly hang up from him telling him it is the school.

I tell his teacher I am turning around and I call in to work.

They tell me to go around the back of the school so I can park on the hallway his classroom is located.
When I get there one of the Parapros is waiting for me outside.

The Principal, teacher and a black man I had not seen before are standing in the doorway of a room I believe Xavier is in and I hear the loudest banging noise coming from inside..

What I saw when I arrived was devastating to say the least .....

He was angry, lying on the floor in the Sensory room kicking a file cabinet so hard I could hear it as I came down the hall.
I was told he had hit the clock on the wall and broken it. It was lying in the floor. He has also hit his teacher and para pro and even tried coming at the teacher to choke her.
I haven't seem him this aggression in about 4 years and when he heard my voice, he was stunned.

We worked SO hard last year to get his aggressions down.
This was the first time I had given him Psychotropic drugs to help with it.
His County School Behavior Specialist came to the school almost every day to work with him and I worked with a Behavior Specialist from the Marcus Institute at home for 10 weeks at 250 bucks a session.

His aggressions went from 32 in a month to 2 a month and they were nowhere near as intense as they had been before. He is filmed and used in the training sessions for the Autism classroom teachers in the County and viewed as a success story.

He had a great Summer, had no issues..  Even took  break from his meds at the advise of his doctor with no issue. But now the floor is falling out from under us.

So as he sits up in the floor and he can see the hurt and sadness in my eyes as I tell him " We do not DO THIS"  and ask him " What is the matter with you?' and he begins to cry., So does his teacher and I try to hold back my tears to be stern as I tell him he has to put his shoes back on so we can go home.  The remainder of his class is loading the bus outside for Community Skills.

For a few minutes he refuses to put them on, asks for the red scooter in the Sensory room instead as if to try to bargain with me to stay at school. But I tell him his behavior means he has to go home today and he sits and cries and feel the tears welling up in my eyes as well..

After I start to put on his shoes and his teacher and I tell him he has to stand up, he finally gets up to leave and when we ask him if he hit the clock , he says no. When we ask him if he hit his teacher, he says yes and I tell him to apologize and he does.

The Principal for Special Needs rubs him on the head. On the way out the door, his teacher asks him for a hug and he hugs her.

As the principal walks us back to the back door his teacher tells him goodbye and he tells her goodbye and that he loves her..

She is still wiping away tears as the para pros tell her they have to load the bus now and that they have already put her backpack inside He then tells his principal goodbye and that he loves her and we walk out the door and it ends just like that.. ...

On the way home, Xavier acts as if nothing just happened. He ask for computer and I tell him he lost that privilege as he earns it each afternoon by being good all day at school.
Once home , I tell him to go to his room, I try to make sure he understands that he has done something wrong,

I try to do this while wanting to cry and hug him and tell him that I am trying to find out what is going wrong.
I want to fix it  so badly. 
These moments in his Autism are indeed the hardest for me.
I feel like I am his mom and I want to make it better, but I cant and I feel helpless in those moments.

I now sit as I always do, in the quiet of the house, trying to figure out where I went wrong and I admit, I am at a lost and totally frustrated as I sit missing a day of work while he is now asleep in his room.

So many things run through my mind when he has a change in behavior like this..?
Was it something he ate, maybe I should not have given him his sinus meds this morning?
Maybe be he should not have worn jeans, since this episode seemed to start when he asked for "red pants" at school when he doesn't own a pair?
Maybe this is puberty? Is his hormones changing? Maybe the break in the Summer was a totally screw up and now has thrown him all the way to left field.?
Maybe he ate too many eggs?..

My mind is running in circles.

Doctors are little help. THEY GUESS.. Yes I said it, they guess at what would help because the Government has done little to no research as to what will help our kids.

If you google " Autism Aggressions" you will find all sorts of people suggesting ALL sorts of things from HEAVY Psychotic drugs to Homeopathic remedies.. Here are a few sites

http://www.drugs.com/forum/drug-information/autism-aggression-23281.html

http://www.disabled-world.com/artman/publish/autism-aggression.shtml

http://www.circleofmoms.com/autismaspergerspdd-awareness/medications-for-aggression-412845#_

http://pediatrics.about.com/od/autism/a/05_autism_rx_4.htm

While I am searching the Internet to keep my mind off of crying , Mark calls , I really don't want to talk, but know if I don't answer he will not be able to concentrate for the rest of the day at work, so I do..

 In the past, I did not like to talk to Mark when Xavier is having a hard time.
I always felt like it would be distracting to him , especially when he was at work.
It felt like I twas burdening him and usually once I heard his voice over the phone I would cry.
Maybe because I knew if no one else in the world could feel what I was feeling at the time, he could , so no matter how much I had been able to hold back the tears when I talked to him, they would flow, which I felt like made it worse for him.

But one day he brought it up and told me how he felt I shut him out, told me that not calling him made him more upset at work.
He was left to wonder and that was worse to him.
So now, I don't withhold when he calls even if I really don't feel like talking... I do...

I tell him what happened and he is upset. I tell him to go back to his desk at work and I will handle it as I always do.
He tell me he loves me and to not beat myself up. We both have a tendency to do this when Xavier is having a rough time.
We try to figure out what we did or didn't do that could have caused it..
But have learned to never blame each other and not let each other beat ourselves up..

As I type, I start to get texts from Xavier's teacher asking how he is doing and that she wants to start documenting everything he takes in until we find out what is going on with him , while one of the Para pros texts me to tell me she loves her boy and is praying for me and the tears start to flow again....

I almost cant believe I STILL GOT PRAISE in my heart, but I do..

Praising God for a school and staff that loves my son, in spite of his faults..
Praising God for a concerned Husband and father...
Praising God that I am able to come see about Xavier on a drop of a dime.
Even praising him for the tears because I know they are my release..

So today is a day I don't now what to do, So I will sit still and be quiet and know the Lord will see me through..


www.childrenofdestiny.com

ParentsParent's Prayer:  for Thursday , September 20, 2012

Dear Heavenly Father,
There are times when we feel how helpless we are to make life turn out alright for our children. In our own strength, we are unable to keep accidents, evil, and disease from touching them. There are times when we wonder what the future holds, especially for Xavier.... Lord, in those times when we feel helpless, remind us that all of our hope for this precious child is in you. You have a plan and a purpose for his life, and your mercy and power are sufficient. Lord, in this day I pray that you would use us to help mold and shape him. Give us great wisdom to know how best to help him continue to reach his potential. But most of all, help us to always trust you for those things that we cannot control, knowing that your love for him is even greater than ours.
In Jesus' Name,
Amen








Monday, September 17, 2012

The Isolation of Autism and the Rudeness of Others


If you are not careful you could loose your own socialization skills by having a child with Autism.
Many times parents of children with autism do not have the same opportunities to socialize as parent of typical children.

This may be due to a number of reasons.

Some common ones I have found are:
Tantrums and odd behaviors of their child, cause them to be embarrassed and often stay at home.
Sometimes if parents are unable to control violent rages or tantrums of their child, they often stay at home.
Since autistic children lack social skills they may not make friends at school as typical children do, thus not be invited to
Play dates,
No birthday parties
No Sports events
No music lessons

So parents of children with autism loose many of the avenues in which parents of typical children connect through the common interests of their children.

Often times, they are too exhausted or bogged down with extra duties to even have the energy to be social.
Between therapies, school meetings, their other children and work, their schedules are booked.
They don't have the time to have conversations over the phone, meet for lunch or coffee, they are just plain worn out.

For me, I have learned that a few really good friends can take the place of a 100 associates.
I have learned that my true friends tend to focus on the "Quality" of the time we spend together and not the "Quantity" and for that I am grateful.

As well, Mark and I decided to socialize Xavier as much as possible as early as possible. The eye opener came when we had to leave an event because Xavier was " tantruming" and Jordan mentioned to us that we never get to do anything  if Xavier cant do it, none of us can.. That lit a fire under us for sure.

We didn't wait for the movie theatre to offer " sensory friendly films" , we took him to the movies during the matinee when there were more babies and children in attendance and being silent wasn't such a big deal.
Now as long as he has his popcorn and a Slurpee he can sit through just about any movie at anytime. If he becomes bored, I bring his handheld video game and allow him to play it on silent..

We take Xavier bowling, to the park, swimming and anything else we like to do as a family and just handle whatever issues he has and move on. He is also lucky that his school does " Community skills" where they take the children out in the community shopping, out to eat and other activities to get them used to being in pubic places.

Now, if we are just sitting at home like we were on Saturday, Xavier will say" Car please" or "get dressed" to let us know he is bored and wants to get out. So since we had not seen Men in Black 3, we all decided to catch the 7pm at the 2 dollar movie and we had a great time. I was pretty grossed out, but the guys loved it.. It even caught Xavier's eye when one of the aliens took off his hat and had no scalp.. " he said" Hair!!" and I said no baby he doesn't even have a top to his head.. and started laughing as he stared hard at the screen as if to say " What in world are we watching"..



Since I didn't have much help with babysitting I really had no choice but to take Xavier and Jordan everywhere I went.

If he had a tantrum or any other issue I just handled it. Even in the presence of rude strangers and their comments.

In doing this I have learned coping skills to handle public issues way better than I did when I first started this journey.

I admit, before I learned how to handle other's comments,  I had my " Laila Ali" attitude on..

I can remember once in a store with Xavier screaming and kicking and me trying to get him in a basket as well as wrangle Jordan in since he was only 17months older,  a lady offered her opinion that if "Xavier were her child she would beat his ass."

I politely told her he had autism.. BUT when she said he didn't LOOK like anything was wrong with him I took it there. ...
In my frustration, I told her neither did she, but it was obvious she was stupid..

 When she said she would still beat his ass, I then told her she would have to beat mine too and if she felt "froggy to jump" and stood there..glaring waiting for her to decide..(My "Sadie Mae and Willie J" )attitude had arrived by then and I was ready to throw some blows... That's when my hubby came over and politely lead me and the children out of the store.

Xavier also had a way of invading others personal space that would get me into trouble as well. He was so quick, he could do things and still can in a blink of an eye..
Like the time we were standing in line at Kroger and the guy in front of us had a huge scab on his arm and Xavier went over to try to remove it.  He was pissed but was quiet when I told him Xavier had autism and to please forgive him. Then I politely sanitized Xavier to DEATH when we got to the car...!
Or
When he touched the bald man's head that sat down in front of us at church. I have to admit it was reflecting the light something awful.
But when he turned around I was about to explain and Mark gave him his usual " You gotta a problem look" and he turned right back around.. That happened again at a Falcons game a few weeks ago when this guy had VERY Hairy arms in front of us and Xavier just had to touch his arm.   Xavier got sanitized again!  I keep a supply of that in my purse at ALL times..

For Mark, even though he always says he is "waiting on the other person to ask a question" one look from him and nobody usually says a thing to him, but for me I figured I had better learn some coping skills or catch a case..

First, I  found the best thing I could do when someone made an rude or uneducated comment  was to educate them.
Since I knew I had a tendency to not say things in the wrong way  when I was already frustrated with trying to settle Xavier down, I found cards similar to these that I could give to the person instead of saying a word
                                            http://www.autismsupport.org/AutismCards.html

Keeps from having any verbal exchange and me out of jail....;-)

Nowadays I am more apt to talk to the person.
If I feel they are too stupid or rude to reason with,  I just totally  ignore them and focus on Xavier and what I need to do for him in that moment.
Although it is sad, it also helps that so any more children have been diagnosed with autism since Xavier was diagnosed almost 11 years ago so more people are aware and educated.

I admit it has taken me a long time to get here, but like they say practice makes perfect..


                                                  Xavier Second Place bowling at Community Skills










Emotions

There are so many emotions a mother experiences when she has a child.
Worry, excitement, fear, ....
Once that child is born there will be many times she will question whether what she is doing is right.
Especially when the child is an infant and cant really tell her what hurts or how they are feeling.

You also have many dreams for your child, some logical, some not.
I can remember being smaller and having my mother and my Ma-Dear sing the Miss America song for me, but I am sure they knew that was a long shot....I was pure TOM- BOY.. LOL !

When a parent has a new child, they have all kinds of dreams for them, but when they find out they have special needs, many of those dreams shatter.

Instead the parent goes into a cycle of  never ending grief.

According to The Kübler-Ross model,  The Five Stages of Grief, include denial, anger, bargaining, depression, and acceptance.

Most times a mother or parents may go through these stages one by one or as I have found, sometimes, I can feel two or more at once.

When Xavier was first diagnosed, the only way I could describe the way I felt was like having my child die and having to attend his funeral daily.

Many times as the years went by and I could see more things Xavier was not doing that kids his age were doing and my image of the baby I had, the toddler and the little boy I had dreamed he would be the day I brought him home, shattered one by one, day by day, year by year.

Most times we expect to not be able to tell what is going on with our infant. Most times we look for a special cry to tell us they are hungry, wet or just plain tired, But as our kids get older they are able to tell us when they are hungry or hurt or anything else and parenting becomes a little bit easier.

For me and Xavier the same cycle continues.
He uses what little language he has to express his feelings the best he can, but there are still times when I am clueless as to what is going on with him.

The stages of grief are a never ending revolving door. One I know I will continue to push my way through forever.

There have been times I have been in anger. Angry at God, angry at myself for not seeing Xavier's autism earlier or missing something that has caused him a meltdown today at school.

There has been times I have been in bargaining, asking God to give me some sort of sickness to heal Xavier, or telling God I would do all kinds of stuff to see him healed.

There has been times I have been in depression. Depressed because there is some treatment we cant afford to give him when he needs it. Depressed because I see so many things he is missing out on or just physically, mentally and emotionally tired from all the extra things he requires.

One stage I can say I have never been in is Denial and I consider it a DANGEROUS place to be in. Mainly because if one is in denial they can not do better, cant get better and thus they do not grow, so they die.

Many people say that being in acceptance is basically lying down and saying you accept Autism and all the things your child can not or will never be able to do. I disagree.

 I feel that acceptance is when you know your child has limitations and you have decided to work within those limitations to make your child the best they can be considering the circumstances.

One thing is I try to be aware of what stage I am in at all times as I know it will affect how I deal with Xavier and the situation at hand.
If I have to attend an IEP meeting for him, or take him to the doctor or work on a behavior issue he is having, I try to know what I am feeling first so I can go into that situation  aware of what I am feeling and how that will affect my actions.

I have been told that Stress is the distance between your expectations and your reality. The larger the gap, the more stress.

So in acceptance I feel I have shortened the space between what I expect from Xavier and what is reality.
I have decided to meet him where he is., but nobody said I cant try to lead him to where I want him to be..;-)


Wednesday, September 12, 2012

Marriage and Autism

I am not , I REPEAT, I am NOT a marriage expert.

My parents got divorced when I was six months old and I did not see anyone in my immediate family have a successful marriage until I was in my late teens.
 
I tell all of my married girlfriends, I cant tell you what to do, but I sure can tell you what I have done that DIDN'T WORK.. because that's what my dad used to tell me... LOL !

One of the first things Mark and I did when we found out Xavier had autism was to attend a National Autism Society Meeting.

During that meeting we were told that the divorce rate for couples that have a child with autism is 90 percent..;-(
That was back in 2004.  More recent studies are dispute that number. Other research says its 80 percent, which is still a little better than before.

Needless to say, the ride home after that meeting was very quiet. 

I can honestly say I  see why the divorce rate is so high for autism parents.  Having a baby in a marriage changes the dynamics greatly. The mom changes her focus to the baby. Add in the dynamic that the baby has special needs and the focus becomes even greater.

It is also hard to have time as a couple when you have small children.  If your child has special needs its even harder.
Then you add in all the normal issues that most married couples face and we were having them all..!

Money issues, Jobs issues, Children, Different parenting styles, in laws, health issues and just about any other thing we could imagine.

After that initial meeting Mark and I decided that if we were to ever get a divorce, it would not be because of Xavier.
We decided that we would not blame him for our lack of effort to make our marriage work.

There has been times when our marriage has been shaky and once we even considered separating just to give each other a break.

With the lack of family support and adequate childcare for Xavier, we NEVER got a break from either of the boys.
Our logic was that at least if we were separated we could rotate having Xavier each week to give each other a break.

Xavier could be a handful.  He could be like keeping two children at once!!!!. He had to be watched ALL the time and he was quick! 
He had pica, which is a disorder where he would eat non food objects. I had to keep the house SPOTLESS and vacuumed constantly.
Plus he had tantrums still when he got over stimulated or could not express what he wanted or was just plain angry or tired. Then to add Jordan into the mix who was only 17months older, it was like having triplets!

Xavier had chronic diarrhea. Whatever he ate came out the other end as liquid. I was constantly changing him and his little butt stayed raw and irritated.  He did not sleep! He literally went to bed with Jordan at 9pm and was up again in four hours to stay awake the rest of the night.
Mark had gotten laid off and I was the only one working full time. He was working at night part time so I was up all night with Xavier and then off to work the next morning.
 I often laughed when people would mention us being on the TODAY show. The day the show aired, I had called into work because I was so sleep deprived I didn't trust myself to drive to work. I was asleep on the sofa since both boys weer at school and Mark was substitute teaching that day, I MISSED the ENTIRE THING! LOL !

Then I was having health problems. I started to notice that when I would eat,later in the day I would throw up and the food was not digested.I thought it was stress.  I later found that since Xavier was so big and I carried him for so long to 38 weeks, my stomach had been pushed up and part of it was overlapping onto my liver. 
It would have to be corrected as soon as possible as it was causing me not to digest my food and the part of my liver that  was under my stomach was not working properly. It would have to be surgically corrected.

When I look back at this part of our marriage I often become sad. The time I feel like we should have been enjoying each other and two beautiful little boys were were stressed beyond belief!  But I also see how God never puts more on you than you can bear.
                                                                           He sent us RAMS in the bush.
Leronda and her mom fell in love with Xavier, so outside of being a great ABA therapist,  she often offered to babysit him for us.
He loved being at her moms house so much that when I would come to pick him up he would cry..
My Godmother (Nana) would also keep the boys on the weekend sometimes as she worked full time during the week. I made sure when I used her it was for a good reason as I didn't want to wear her out.

Once Leronda stopped doing ABA with Xavier after school. Mark had found another full time job and since I had taken a Part time job with STEP, Inc, so Xavier's care became my main responsibility and it remains the same today.
I find that with most families with special needs children, especially African American families, the cost of specialized childcare is too expensive. Some places offer Respite under State programs, but you have to be below the poverty level to qualify.
Many times, family does not help and we were no exception.

We did not realize how bad it was until my mother got cervical cancer the year before we moved from Memphis.
She had to have surgery to remove her cervix.
She was a hour away at an Assisted Living facility and I had planned on taking the boys to school that morning and driving up to be with her and Mark was going to leave work early to get the boys from school.
But that morning Xavier got to school and the school called and said they "thought" he had ringworm.
 Really it was his kindergarten year and I had asked he be mainstreamed for part of the day with an assistant n the regular classroom and since the regular class room teacher didn't want him there they found EVERY excuse in the world not to work with him and today was no different.  I had to go pick him up...

I called Mark and told him I had to leave or my mom would be afraid to be put to sleep and if I didn't leave soon I would not be there before they took her to surgery.
Mark called his parents and asked if they could watch Xavier and Jordan until he could get off work at 3pm and they refused.
They said they could handle Jordan but not Xavier.
He left work and met me on the highway to get both boys after I went to pick both of then up from school and I went on to see about my mother.

                                                                                      BUT GOD! 

After that day, Mark called his mothers friend, Ms Evelyn.
She kept children in her home and agreed to keep Xavier and Jordan.
 "Ms Ev" as she is known in our household, handled Xavier with no problems. We call her the "Childcare Extraordinaire".
Even today Xavier and Jordan still love her and Mark and I DO TOO.

From that day forward we decided we were a team " Team Trent" and that we had to focus on the people under the roof with us FIRST.
Charity would begin AT HOME...

I feel like although our marriage is not perfect, I feel it is very blessed and strong. It will never be perfect because Mark and I are human and IMPERFECT.  It is a constantly evolving and growing relationship.

Yet, We have gained some very good things from being left to our own devices.

Our family unit became very close. The four of us love hanging with each other.
Mark became very romantic and creative. 
We have had picnics in our den floor while the boys napped. Complete with blanket, basket and wine.
We have seen movies at the drive in after we have bathed and fed the boys and stored the third row seat in our SUV to make a bed for them.
We have sat on the balcony of our apartment for breakfast and danced in our bedroom to the radio instead of going out to dance.

We have learned to MAKE time out of NO time, to  HAVE time for each other.
It is not about the quantity of time, but the quality of time we spend together.

We have learned to talk , REALLY talk and he is TRULY my best friend.
Most of all we pray together and for each other, especially when we disagree.
We have still kept the promise not to let our lack of effort cause us to blame Xavier's autism if our marriage failed and I pray that we always will.
Love never fails
 
On a different note, Ms Evelyn lost her own mother on yesterday and I would like to ask everyone to keep her in your prayers.





















Help from Unexpected places; Don Imus

My brother Scott called me one day and asked me if I knew a man named Don Imus.

Yes, that Don Imus, the one who a few years back got blasted for calling the Rutgers Ladies Basketball Team " Nappy Headed H's"

Yeah, I know, when that happened I was so sad, so disappointed in him, but  all of my good memories of Don just could not be erased.

After all he featured  information on his radio show about biomedical causes of Autism that changed the way and direction of treatment for Xavier for his good.

At the time, I had never heard of Don Imus as I never listened to talk radio. Besides, I was so overwhelmed with Xavier since he was not sleeping during the night at the time, very energetic and had no sense of danger that  I couldn't  even remember the last time I had listened to the radio..LOL!

During our call, my brother went on to tell me about a feature he did on a report from Robert Kennedy on vaccines and a lead used to preserve them when they are combined into one vial called Thimerosal.
Combining vaccines is a way Pharma companies save money on the vials that the vaccines come in. If they can put two in one vial that a two for one.
Problem is in order to keep the vaccine potent they use a lead based product to preserve it.

That's where the problem come in.

Here are the symptoms of Lead poisoning
http://www.nlm.nih.gov/medlineplus/ency/article/002473.htm


Robert Kennedy's report is listed here:
http://digitaljournal.com/article/289562
The original report was done in 2005 I think.

But, I decided to go at Xavier's symptoms from a physical and biomedical direction from that point on and many things I have tried have helped him.
 So yes, I am one of those crazy moms who feels my sons autism was caused by a vaccine reaction and No he has not taken any more since then and as long as his Titers come back showing immunity, he never will as long as I am alive.

But I dont feel vaccines are the only thing that causes Autism and I dont believe it was the only thing that caused Xavier's.
I feel he has a immunity disposition that hampered  and still does hamper his body from  disposing of the thimerosal. An immunity issue similar to a person who is allergic to peanuts, or has celiac disease.  I believe that Autism is digestion and gut related for most kids. Especially since your gut is 70 pecent of your immune system.
http://www.newleafhealth.com/probiotics.html

In addition to this I feel the children today take three times as many vaccines as a child that was born when I was and that was just 40 years ago.
http://www.chop.edu/service/vaccine-education-center/vaccine-schedule/history-of-vaccine-schedule.html

Don't get me wrong, I am not against vaccines altogether. Yet, I feel vaccines just as Special education classroom placement should not be a " one size fits all" .. thing....

I believe if your child titers are drawn and they still show immunity a second shot for the same thing is not needed and shouldn't be given. A few years back when I wanted to work PT in a hospital, I was told i would have to take a TB shot and Chicken Pox.
I had my titers drawn for Chicken Pox and I am STILL IMMUNE TO IT.. I think  I had that shot when I was like 6 years old and  I turned 41 last week. 
I also feel vaccines should be spread out more. Not so many given at such a young age when ones immunity if immature anyway.
Especially when between the ages of 0-2 one develops their beginning language skills and lead poisoning can take this away, just as I believe it did with Xavier.

So what is the reason other than to make money are we giving our kids so many more vaccines when many things they are being inoculated for have not been around for decades?

I guess the world will never know....But I guess a nerd girl like me will always study to show myself approved before I allow anyone to give, administer anything to me or anyone in my family as many times the motivation behind medical care has more to do with billing hours and RX payments, than actual health.

















Sunday, September 9, 2012

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...;-)












Wednesday, September 5, 2012

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?