Wednesday, September 28, 2011

Vinegar and No Honey


PRESS RELEASEFor Immediate Release:
September 27, 2011

Contact:Lori McIlwain (Cary, NC) 919-741-1646
Leslie Phillips (Katy, TX) 281-578-2793
National Autism Association (NAA) Says Vinegar-Soaked Cotton Balls in Disabled Students’ Mouths Underscores Need for ‘Aversives’ Ban
Katy, TX – Monday night, in an effort to demonstrate inhumane practices known as “aversives” happening in special-ed classrooms across the county, school district officials in Texas were asked to insert vinegar-soaked cotton balls into their mouths. The request came from advocate and NAA board member Leslie Phillips following multiple reports from local parents who say their children attending Exley Elementary school in Katy were force-fed cotton balls soaked with vinegar as a form of discipline. “There were no takers to the request,” said Phillips.
According to parents, Exley students, some of whom are nonverbal, were sometimes forced to get on a classroom treadmill, ostensibly there for exercise breaks and forced to go faster or longer than they wanted. In addition, cotton balls saturated with vinegar were placed into their mouths to control behavior. Parents say they were told certain “procedures” had been used on their children without their knowledge or consent, and the district would address the issue. Exley Elementary School Principal Imelda Medrano used only vague references, saying, “a treadmill was used” and “vinegar was introduced.”
“Parents Carol and Bill Rutar said they were dumbfounded to learn these strategies were not illegal. "If I were to attempt to force an adult to do something like this, I would be arrested and charged with assault and battery. Further, if this happened to a student in a general education setting, there would be public outrage. It’s precisely the type of bullying behavior between students that is the focus of national attention and expressly prohibited," said Carol Rutar.
Parents still await information from the investigation, conducted by the district’s own police department who has confirmed the matter has been handed over to the District Attorney.
Aversive interventions tantamount to child abuse are being used in many schools across the country. “Withholding food and water, lemon spray to the eyes, force feeding, sensory exploitation, shaving cream to the mouth, peppers to the mouth – these are just some of the assaults that have been used on schoolchildren as a failed means to control behavior,” said Lori McIlwain, Executive Director of NAA. “Positive behavioral interventions have been proven successful, there is no excuse for aversives in our schools.”
Phillips, who spoke with a Texas Education Agency official about the case, was told that while Texas is one of few states that regulates seclusion and restraint in public schools, “. . there is no law that says aversive interventions are or are not legal in Texas.”

The advocate hopes school principals nationwide will take positive action. “My message to principals is this: if aversive interventions are happening in your schools, you should act to stop it. Positive support training is needed, and law or no law, aversives are abusive and dehumanizing. They should be banned in your school.”

For more information, please visit www.nationalautism.org and www.autismsafety.org
.

Wednesday, September 21, 2011

Eye Issues Again



Not sure what is going on but he is having double vision again.  I mentioned that he was complaining about it at church Sunday.  Well, yesterday the school called me and said he was running into desks and rubbing it constantly.  When they asked him about it he said it was blurry and he was seeing "two of everything".  I went up to the school to monitor him and he seemed upset over the whole thing.  He was worried about tripping or running into something.  He wanted to come home but I thought it best he stay and see if he was not just wanting to get out of school.  I could see a worried panic look in his eyes as I left.

He came home still very stressed about it and saying he could not see.  Then he starts asking for glasses.  We bought him some reading glasses the last time we went through this and it made him happy.  They did not fail me this time either.  He swears he sees better.  He left this morning (picture above) wearing them to school.  So....what is it?

The last time we blamed it on medication.  However, he is on different medication this time.  Could it still be the medications although a different one?  Or could it be allergies?  They are really bad right now and he does have a runny nose and cough.  Or could he be exaggerating the situation?  I have to remind myself that it is the little things that drive him nuts while the major aches, pains and discomforts do not bother him until his body is shutting down.  So.....what is it???????

He also is in a completely different frame of mind.  He is very calm and quiet.  He went to his room by himself last night and started writing a book about a super hero with autism.  It was only 3 sentences but he was putting the effort out.  I'm so perplexed this morning.  Any ideas on the eyes would be greatly appreciated!  



Monday, September 19, 2011

I Reached My Goal

I can't believe that I finally reached my goal....in one day!  I finally got over $150 of donations to Team Camo Angel for the Autism Speaks Walk.  Thank you SO much for the support.  We are now in 11th place as a team.  If you have not done so yet please consider making a donation to our team in honor of Joseph.  This goes to an awesome cause!!!!!  Just go to our donation page:



The walk is October 9th so time is running out!  Thanks for all your help, prayers and support!

Raising Cane

Okay.  This is a two meaning title.  First of all, on Thursday we had the Autism Speaks fundraiser at Raising Cane's in Lincoln.  We took Joseph for dinner and were met by more family and a few friends.  It looked like a great turnout.  Hopefully, at least one person out there learned something more about the mystery of autism. 

The ride to Lincoln was during traffic hour and it was raining, cold and nasty outside.  He was really bothered by the whole thing and just sat in the backseat rocking and talking to himself then screaming to me (in a loud overpowering voice) asking when we would be there because he was "starving to death".  The restaurant is located on a very busy intersection and when he got out of the car he panics.  He covered his ears, froze, looked terrified and wanted to get back in the car.  My fear was that he would run.  As I am trying to figure out what is wrong and thinking, of course, that it was the traffic, he screams that it is the "stupid music!  Why do they have to have that stupid music blaring like that!  Make them turn it off!!!!"  The music was a single speaker OUTSIDE the restaurant with some music playing at a volume that could barely be heard above the traffic.  But THAT is what set him off.  Does anyone wonder WHY the puzzle piece is used as the universal autism symbol?

And secondly, I intend to write about how the weekend was FULL of raising cane.  I just wish it could have been in the form of more yummy chicken dinners and not stress.  I got my granddaughter Friday afternoon for the weekend.  In hindsight, that was not such a good idea after the past week we had with Joseph.  I think I should have waited for the medications to really start working and for him to get stabilized.  Everything was okay Friday evening as Joseph was actually sleepy and very calm.  But Saturday both grand baby and Joseph were not very happy.  The baby was very whinny and seemed to not be feeling well.  The crying baby totally set off Joseph.  He became louder, aggressive and kept screaming to make her shut up!!!!  The louder he got the more she cried.  It was total chaos.  Thank God for a husband that was on top of things and took the two boys to work with him for most of the day.  I was able to get the baby settled down and some housework done.

Sunday was rainy again.  This is never a good thing with Joseph as it keeps him locked indoors and his energy MUST be released.  He made me very nervous at church.  He looked scared and pale.  He was saying that his eye was blurry and he was seeing two of everything.  I figured a migraine was coming on and watched him closely.  But after mass he played outside with the other children, ate well, and seemed to be doing fine.  The weather cleared and he played outside when we got home.  I gave him his sleep medicine on time however he was not asleep by bedtime and I was concerned.

He feel asleep around 9:30 but was up at 11:45 and was up the rest of the night.  The whole night!  Moving around, eating, watching TV, playing video games and talking to me!  LUCKY ME!  I feel like a truck me this morning but he just bounced off to school happy and alert. 

Awww.....sleeping like a baby....as a baby.  This may be close to what
he looks like today at school!!!!


As to me, I guess I will just remember this quote:

"I'll sleep when I'm dead." ~Warren Zevon

Tuesday, September 13, 2011

Rattlesnake In A Pickle Jar

After a long day....a very long day....we saw his doctor this evening.  I went in so exhausted but still angry enough to demand something be done.  I left feeling satisfied and found a little peace.  Satisfied because the doctor saw Joseph in ALL his ADHD glory!!!!  He broke a clock and was attempting to break the scales in his doctor's office.  He attempted to turn off the lights.  He talked none stop about things that didn't make sense.  When I told him the doctor could not see in the dark he asked, "How do you know he doesn't have night vision, huh?"  I said because he is not a robot.  He asked "how do you know?"  This went on for 30 minutes straight. 

And then I felt peace because I said what I had to say and demanded solutions.  I told HIM how it was going to be.  I told him that I would bring Joseph to the hospital and leave him there while he is monitored and the meds adjusted until something works.  I told him I was seeking RTC and that this would be the best thing for him.  He did NOT disagree.  He listened....and that means a lot!!!

He put him on Tenex which I asked for and Munroe Meyer had suggested.  He added Ambilify with his evening medication.  And also put him on Ritalin...a small dose....that may help the Tenex even more.  And then......................as always........insurance!  They would not cover the Ritalin until they got a doctor's pre-authorization.  As I am telling David about this Joseph says from the backseat, "Well, that makes about as much since as a rattlesnake in a pickle jar!"  Sometimes that boy is SO smart and profound it just scares me!!!!  I agree, Joseph.....I agree!!!!  So we will see what happens with that.

So we got some medications to try, a school to look into, and a plan for the future.  And now I am tuckered out!  He is fast asleep and I have to grab every moment that I can.  I just wanted to update all of you.  Thank you for all the prayers, the emails, the masses and the rosaries offered for our family.  I can not believe how strong I feel tonight.  I know that it is your prayers holding me up!!!  God bless!!

Tuckered out....Joseph at the air show.  This is how he deals with stress in public.
Over 90 degree day so the cement is hot.  But he was done!

Still No Answers

I did not notify anyone of the last post.  I was too distraught and maybe a little ashamed that I posted it.  I'm still stressed beyond my human limits but felt that I needed to offer an explanation to those of you who have been praying like crazy for me.  And I know you have been praying...I have felt it.  Our saga is not over.  At this point not too much has changed.  I will tell you what I know so far and share with you my only morsel of good news. 

This past month or two has been so hard.  He started falling apart after we were forced to move in a very stressful and scary situation back in June.  I thought coming back to this house would make him more at ease but I was wrong.  So yesterday after having a very hard weekend and functioning (or not) on very little sleep I had decided to make him a ward of the state so that I could get him into residential treatment.  This was a very gut wrenching decision to make but I fear for the other children and I'm left with little choice.  No one will help us any other way.

I got on email and the phone Monday morning begging for help and searching for answers.  I want him out of my house as soon as possible.  That was my only thought and mission.  My family can not handle the stress much longer.  I turned to a friend of mine all the way in Oregon who also has an autistic son.  I have to keep reminding myself that every case of autism is different and that some are worse and some not as bad.  Joseph's is "complex" and "unique".  That's just what every mother wants to see on report after report. 

I have followed all the directions and rules in getting him the help he needs.  I was told to seek this therapy and that therapy.  To explore all avenues first.  We had in-home therapy.  We had cognitive behavioral therapy.  We had occupational therapy....speech therapy....physical therapy.  We have tried medications for sleep, ADHD, bi-polar and anxiety.  I have done tons of sensory therapies and changed our family life and our home to accommodate Joseph.  Nothing heroic here...any mother would do this.  However, at some point, you want to see a pay-off.  There has been none.  We are at square one....right where we were 3 years ago.  Forget the fact that I have 2 doctors that have recommended residential treatment.  That, apparently, is not enough.  Because once you follow all the rules of Nebraska you THEN have to follow a totally different guideline per Nebraska insurance! 

I did find out one helpful piece of information.  I was told that if we bring him back to CAPS I do not have to go get him until I feel he is not a danger to himself or my family.  I know our insurance allows for a 30 day stay.  They always send him home after 3 days.  It won't happen next time.  And if I refuse to go get him then the hospital will order him to a residential center.  This is my understanding.  I could be wrong.  It would not surprise me.

After a horrific day of mommy meltdowns and tears and hoping for a day of recovery in a quiet home, the school called first thing this morning to tell me that Joseph was vomiting and I had to go get him and bring him home.  I figure it is too soon for another migraine so it is either a) motion sickness from the bus or b) he is doing it on purpose to come home.  Doesn't matter.  I had to go get him.  And he is NOT sick!  He is now bouncing off the walls, demanding food, watching loud cartoons....having a great time.  If I get another letter from the truancy office this year I will be giving them a piece of my mind loaded with pent up angry energy.  BEWARE MR. TRUANT OFFICER!

Tonight we meet with his doctor and I will demand a set of medications that work.  And if they don't within a few days I will be back up there again....and again....and again.  They can put up with a very loud and angry mother day after day or they can hospitalize him, monitor him and get the medications right once and for all!  And so our life continues to spiral out of control, our property damaged, our children threatened, our house in chaos and in the hands of a very stressed out, tired, and angry mom.  So for those that have been praying, please continue to pray.  This is not nearly over.

Sunday, September 11, 2011

Exhausted

This is an understatement.  I honestly do not remember the last time I felt this way.  My bones ache.  My eyes just want to close.  I hurt for sleep.  I don't even have the energy to smile.  I can hear the kind well intentioned words:  "God will not give you more than you can handle." or "This too shall pass." or "Tomorrow is another day."  I appreciate it but this does not give me the sleep my body is screaming for or the rest my bones seek. 

This week has been one of the hardest we have had in the past year.  We should have taken him to the hospital (CAPS) several times this past week but I keep hoping and praying it will get better.  Things are so out of control.  After years of therapy I feel we have gotten nowhere!  I have to start looking for a solution to the future.  I am trying to find a residential treatment center.  And do not judge me.  If anyone reading this post wants to walk a day in my shoes, come on.  I won't deny you the honor.

The aggressiveness toward the other children is at an all time high.  The verbal assaults toward me are totally out of control.  Personal property is getting destroyed or damaged.  The younger children are being encouraged to disobey and holler back with extreme disrespect.  I feel like my family is under attack.  I feel trapped.

The verbal assaults are getting graphic and violent and it scandalizes the other children.  I was called a demon from hell and he screamed that he can't wait for me to die and go to hell.  This was over the fact that we had to run down the road to pick up the other children from their bus stop.  Or he says he is going to murder me or hopes someone else does.  He threatens to kill siblings with a knife.  He is sleeping less even with large amounts of sleep medications.  His anxiety and stress levels are incredible.  I can't imagine the fear he deals with 24/7. 

Please someone help me.  Please....there has to be answers and help somewhere out there.  Please.

Thursday, September 8, 2011

Upside Down

That is the way he wants to stay.  Upside down, inside out, this way, that way, over, under, on, off..........and finally he passes out.  This has been a constant the last few days.  It is mind boggling.  I swear that if we could figure out a way to hook the house up to him we could go off the grid.  The energy is like nothing I have ever witnessed.  I started wondering tonight if it feels like restless leg syndrome.  I get that sometimes and want to keep moving my legs. 

Moving so fast I could not get the picture.  This is his favorite position.


This week has been hard.  VERY hard.  I am fearful at this point of him being able to stay in the home through his teenage years.  Monday he was out of control.  He got on the roof of the barn, got a bow and arrow out of the shop and was using it with a yard full of children, started running again (this is when he runs out of control away from whoever or wherever we are), had several meltdowns, threw a brick at a sibling, broke rule after rule after rule....just totally out of control. 

Part of this could be due to the fact that he got off his daytime medication that helps with the ADHD.  This is the medication that insurance has stopped covering.  I thought we would just do without as I am tired of going through this insurance and doctor saga but now I don't know if that is possible. 

I met with the graphics shop today to work on our T-shirts for the walk.  We are looking at camouflage shirts or hunter green with the hunter orange writing.  I am also thinking about having a banner made.  I have 80+ kids from my daughter's high school signed up to walk with us!  And I have sold a few puzzle pieces!!!  Things are moving along.

I am going to post the links again.  Yes, I am begging.  I'm sorry that it may feel that way but there comes a point in a person's life when they feel like there is nothing left to do but to beg.  I feel tired and hopeless in dealing with this disability.  Putting myself behind the cause of finding answers to the puzzle of autism helps me vent some of the stored up energy.  So, please do what you can.  And those of you in the Lincoln area please come join us for the walk.  We are asking our friends to come to the Haymarket on October 9th at 2 p.m. wearing something camouflage.  God bless and thank all of you! 


To buy a puzzle piece go to:  http://bit.ly/oK0hWi


Saturday, September 3, 2011

Another Trip to Hospital

It started Thursday morning as I was writing in his school journal.  Thursday's forecast was a high of 99 with high humidity and a heat index of 105.  I wrote to his teacher that I would not be surprised if he got a headache, became lethargic, or even started vomiting.  I had noticed during the summer that very hot days seemed to trigger his migraines.  It was not shocking to get the phone call that he was, in fact, in the office vomiting.  However, I was confused as to what it was because I had also been called earlier that day to go pick up another sick one but he had a headache and sore throat.  Just in case we were dealing with strictly a migraine, I gave him his medication.

I watched Joseph closely that night as he continued the vomiting.  His only other symptom was a horrible headache.  Still not sure if it was a migraine and/or what the other one had I kept him (both of them) home from school yesterday.  So we spent all day Friday vomiting and dealing with the headache in waves.  It was always there but it would be moderate and then severe.  He was able to keep a little food done but as the day went on he started crying and holding his head.  Dark circles were forming under his eyes.  By yesterday evening he was begging us to bring him to the hospital because he thought he was dying.

He vomited on the way there and was screaming to hurry.  When we walked in they put him straight in a room and started tests.  The blood work came back great.  Blood count and electrolytes all looked good.  He had a low grade temperature of 99 probably due to the pain.  He had a sheet over his eyes saying the light hurt his head.  They started an IV and gave him Benadryl and Reglan for the pain.  A CT scan was done and everything looked great.  Diagnosis was a severe migraine. 

I see there were many warnings of what was to come.  I believe that he has auras.  Wednesday I talked to his teacher and she mentioned him rubbing his eyes a lot that day.  Auras in children start up to 24 hours before the migraine hits.  Another warning is extreme hyperactivity.  We were seeing him blurting out and not being able to sit still and stay quiet.  If I can start charting this more closely there are foods and situations he can avoid and medication he can take that will stop the headaches from getting this bad.  These post traumatic headaches are often life long and can get much worse over time. 

Today he is in what they call postdrome.  This is the time of lethargy, dull head pain, exhaustion, and loss of appetite.  God has asked our little boy to suffer so much but I know that all things are in His hands.  As painful as it is, as a mother, to watch I tried to offer it up for all the mothers in this world that watch their little ones suffer from things from which there is no return.  I could not imagine walking in their shoes.