Saturday, October 30, 2010

New Chapter - Hospitalization

I finally had to do it.  I brought him to the hospital to be committed.  I never thought I would be able to do this but I did.  It was one of the worst days of my life.

I could tell when he woke it was going to be a bad day.  He was going to have a short day at school so I thought it would be bad when he got home but we never made it.  He refused to go to school.  He hid from me.  Missed the bus.  And then demanded I bring him to school.  He kicked me twice, kicked furniture, and hit me once.  I just had enough.  So I got dressed and told him to get in the van.  He was very proud of himself thinking that he had got what he wanted and was on his way to school.  When he saw it was a hospital he was not happy.

He went to the back of the van and laid down.  I told him they would come out and give him a shot to get him in....that did the trick.  Once inside he was crying and begging not to do this.  Then he got angry and stomped on the top of my foot.  He was going back and forth between terror and rage faster than the pendulum on a clock.  I was falling apart....Dad was falling apart.  It took the two of us to pull each other out of there and come home without him.

Having his lunch, right before we left him the first day.

However, it has been such a relief.  Days of not worrying or fighting.  Days of no meltdowns or hateful words.  Days of peace and full nights of sleep.  I am ashamed to say that it has been very nice.

They want his diagnosis changed.  We are going to the Munroe Meyer Institute for an extensive study.  They want to have the autism label removed completely.  They believe he has autistic traits but that these are just symptoms of something else.  That something else is believed to be bi-polar.  We knew this was one of his diagnosis....it's on all the reports on him.  So maybe we are coming to an end of trying to figure out what it is and we can focus on what to do.
A visit...playing legos with Bernadette

 This has opened the doors to lots of help and intervention.  There is, sadly, little for autism. 

He also had another test done on his vision.  The news is not good.  They are setting up more tests for him to see what the next step is but his eye is getting really bad.  Poor little guy just seems to have one thing after another to deal with.


Joseph will be home tomorrow, Sunday afternoon.  He knows now that he must never lay a hand on anyone or he WILL be taken back to the hospital and they told him each time he goes back he has to stay longer.  We will see if this brings about any peace....at least for some time.  They changed his medications, as well, so we have some things to look forward to and hope for.  Thanks for all the continued prayers!

Thursday, October 14, 2010

Results

The results of the MRI are normal!  Thank you, My Merciful Lord!  Now, what *IS* wrong?  I did not hear back from the eye doctor.  It was my GP and friend that called me today with the results.  So I should hear from the eye doctor on what he thinks and on what we should do.  However, I have my personal opinions.

I believe Joseph has always had this problem.  I have always noticed that he would rub that eye, sometimes it would cross when he was focusing on something, and he has always hit that eye getting cuts, scrapes and black eyes.  So I believe it is part of the brain damage that was caused by hypoxia at birth.  Or it could have even been caused from the fall from the tree.  But I will always believe it was from birth.  I believe that he is learning to read and to express himself so we are just learning of it. 

Right black eye, Christmas Eve 2004

So the good news is that our little camo-angel doesn't have anything extra wrong upstairs (and Lord knows he doesn't need anything else wrong!).   The bad news is that he has vision loss that can not be corrected.  How this will affected the rest of his life is yet to be known. 


Thank you for all your prayers, love and support.  I have no doubt in my mind that this good news is a result of all the prayers and God's mercy on our family.  Please keep praying as we sign the paperwork tomorrow to complete the process for his entrance into Boys Town. 

Tuesday, October 12, 2010

Tuesday

Joseph was very stressed once we got to the hospital this morning.  His biggest worry was whether they were going to give him the IV before or after he went to sleep.  He asked every nurse, every aide, and even the man that came to offer me coffee.  He was also very concerned about waking up during the MRI.  I kept telling him over and over and over that would not happen.  Cross your heart?  Yes, Joseph.  Hope to die?  Yes, Joseph.  Stick a needle in your eye?  YES JOSEPH! 

He was worried that his hospital gown was opened and showing his underwear.  I told him to stay in bed with the blanket on and it wouldn't matter anyway.  Then he didn't want the blanket on him because maybe an old man or an old woman had used it.  After I told him that there was nothing wrong with old men and women I assured him that everything was washed and sterilized.  Even the pillow?  Yes, Joseph.  Even the pillowcase?  Yes, Joseph.  Even the bed rails?  Yes, Joseph.  I realized from talking to him about old people that the Halloween garbage in the stores and in the yards is scaring him.  Now he thinks old men and women are scary!

Waiting for the funny drugs to kick in

His teachers at school gave him a "care bag" yesterday.  One of the three shirts they gave him was an LSU shirt which he proudly wore this morning.  All the nurses were asking about it and after repeating the story several times it came out that his teachers gave him a care shirt.  They all thought he was a cutie and could understand why his teachers are so taken with him!  There's that camo-angel act going on! 

Sleeping peacefully.....a rare sight to behold!

His MRI took over an hour.  They did two readings.  One of the full head and then one of the orbits so they could get a really good look at the eye sockets.  He was in recovery another hour.  And then in his outpatient room for another 2 hours.  So we did not get home until 1 p.m.  And so far no reports. 

Eating his Happy Meal on the way home

This is the part I hate.  When will they call?  When will I know?  I felt like being that squeaky wheel and telling them I was not leaving the comforts of their hospital until someone gave me the results of the MRI.  But after prayer I realized that God is attempting in His mercy to teach me the virtue (just one of several) that has always alluded me.  So, patience is on the menu.  A side of prayer goes without saying!

Monday, October 11, 2010

Hold Me, Jesus

"Hold me, Jesus, cause I'm shaking like a leaf.  You have been King of my Glory, won't you be my Prince of Peace?"  ~Rich Mullins

I keep listening to and singing this song over and over and over.  I am trying hard not to worry about the MRI tomorrow.  I try not to let my mind run with imagination and fear.  But I'm a weak mother who wants to cling to what is not mine.  I have to leave this at the foot of the cross and beg for strength in the days ahead.  This could be something so small and I am no different than the apostles in the ship during the storm.  In my storm, however, He doesn't even sleep.  He is here.  He comforts me.  He has given me the most wonder community to love and support my family. Praise to you Lord Jesus Christ!  Give me the strength to endure!

Please pray for us tomorrow.  I only ask that I have the strength to accept whatever it is that God is asking.  Blessed be the Will of God now and forever!  AMEN!


Yesterday was the last day of soccer and Joseph scored 2 points!  His team won 3-0 and he was the star!  What a way to end the season!!!!  He is excited about tomorrow because he will get a Popsicle after the procedure.  Amazing how the small things can make little ones so happy.  When do we learn to expect so much? 

I will be posting an update tomorrow as soon as I have one.  Thank you for all your prayers, love and support!  My prayer warriors are getting our family through these difficult days.  I don't know many of you but in the Body of Christ I know we are connected and that one day we shall walk together in His Glory.  God bless you all!

Thursday, October 7, 2010

MRI

We are scheduled for Tuesday morning at 6:30.  He will have to be put to sleep so we have a pre-op in the morning with our doctor.  We are begging for prayers for our little man.  May God give all of us the strength to accept His Holy Will!

Wednesday, October 6, 2010

The Waiting Game

We had a visit today with the eye specialist.  He did not like what he saw.  We have no answers as to what it is.  It would appear that Joseph is losing the vision in his right eye but we don't know why.  It is something in his brain or the eye socket, nerves or muscles.  He is being scheduled for some tests at St. Elizabeth's.  I hate waiting and not knowing but I think of all the parents that go through so much worse.

He was so nervous today about getting the drops in his eyes.  They had to put some numbing drops in before they put the normal drops in.  I have had to promise him that the next thing he does will not involve drops.  I told him the truth about the IV, going to sleep, etc....he is fine.  Just no drops!



On a happier note, he turned 9 years old yesterday!  He asked for the same thing he has asked for the past several birthdays....animals!  He has always loved animals and every year it's like it is the first time he received them! 

Tomorrow we should have a date for the testing.  For now....we wait.

Saturday, October 2, 2010

The Next Chapter


Joseph starting complaining about his right eye last week.  He was saying it was blurry and he saw two of everything.  He stressed his other eye was fine.  I thought that since the brain damage was to his right side and it affected everything on the left side this was simply an eye issue.  But then he told me that his ear was "beeping" and making noises....his RIGHT ear.  And then he came to me one day and said it felt like his head was "bleeding on the inside".  I booked an appointment right away!!!  We took him to a doctor that works with special needs children and to our dismay he sees 20/20.  It is a brain issue.  What is going on is yet to be known.  And so we start another chapter of this long story.

There are now 2 doctors consulting to see what our next move is going to be.  We could weaken the bad eye to the point that his brain thinks he is blind in it or we could strengthen it and try to get the brain to compensate.  However, this could be something more than scar tissue causing this.  I refuse to put into words on this blog what the possibilities are.  I am going to think positive and believe this is just another part of Joseph that makes him who he is.  They warned me about scar tissue from the beginning. 

He is doing so well in school.  He has so many friends.  I love picking him up at school and hearing all his little friends hollering "bye, Joseph!".  Why can't we always stay so innocent and not see the handicaps of those around us?  He is still playing soccer and doing great!  He says he can play soccer with his bad eye but not with a patch so he refuses to wear a patch.  I hope they don't suggest that treatment plan as we will have a hard time getting him to do it.

We will hear something on Tuesday or Wednesday.  Please pray!

Thursday, September 23, 2010

"About Me", by Joseph

Joseph's "About Me" story

On open house night at the children's elementary school the students had colored, made, written or crafted something special which was hanging in the hallways at each classroom.  I get to the third grade room and the class had done "About Me" stories....a fill in the blank story.  Joseph's jumped out, of course, for the writing and details did not look like the other third graders.  At first that broke my heart as I felt he would soon realize he was so far behind the others.  But then I read it and laughed and cried so hard.  Here is his story through his eyes:

                                                    All About Me
                                                          Joseph

                                        All about me in the year:  2010

  1. I like to eat:  GUMBO

  2. I like to play:  FOOTBALL

  3. On T.V. I watch:  FOOTBALL

  4. My favorite movie is:  FOOTBALL

  5. My best friend is:  MRS. HAECKER AND MRS. NELSON

  6. When I grown up I want to be a:  ARCHAEOLOGIST
He did not finish the page but what he said was so cute!  He really does love gumbo.  We call his tummy his gumbo pot.  And football......he wants so bad to play football.  And that really was shocking that he did not put that down as what he wants to be one day.  But then I remembered that his memory and answers are robotic and he learned the word archaeologist from me one day at the beach.  He was digging in the sand saying how he liked to dig for treasures.  I told him that maybe he will grow up to be an archaeologist.  I explained what that was and every time we went to the beach he would ask me "what is that again that likes to dig and that I am going to be when I grow up?"  So, there you have it! 

The most touching part was his best friends.  Mrs. Haecker is his SPED teacher.  He would stop the world for her if he could.  He loves her so much and sees her as his best friend.  And Mrs. Nelson is his para who he loves just as much.  God bless these beautiful women for touching my son's heart and life the way they have.  It is rare today to find such devoted teachers.  I will treasure Joseph's "About Me" story forever!

Sunday, August 29, 2010

The Weekend

A moment of peace

There is simply no way to describe how horrible the weekends are around here.  First we never know if it will be horrific or just hard.  We are always on edge waiting for the next meltdown.  This weekend it was another big aggressive meltdown.  It got to the point Saturday that David loaded him up to take him to the hospital.  However, once he got him there he was standing on his head and bouncing off the walls.  They said there was nothing they could do unless he was a danger to himself or others.  I don't know what we have to do.  Bring the children up there so he can beat on them at the hospital so they will admit him? 

What set him off?  Small things in which we had no warning.  At one point I sent the little sister that he targets to help the little brother clean the boy's room.  He came in, saw her, told her to get out, she said no and that I told her to clean in there and he punched her....with his fist....in her leg.  She had a huge mark and probably will bruise.  She is so tiny and he is so strong.  This is really not a good situation.

All last week was spent on the phone trying to get answers regarding insurance.  The doctor that has to refer us said that we have to have in-home therapy and hospital stays documented.  We have nothing.  But then they won't keep him.  I do not know where else to turn.  One thing is for sure....he can't stay here much longer.  He is a threat to the other children.  He is so strong when he gets that angry.  He pulled me hard enough Saturday that he caused me to fall on the ground.  His aggression toward a particular sibling is getting very scary.  When and how will this all get resolved? 

Tuesday, August 24, 2010

A Window

This is a big picture window in my living room.  Lately it has become a great source of frustration for Joseph.  He is always wanting me to close the curtains.  The chest keeps the drapes from closing completely and he seeks ways to gather it so there is no light coming in. 


I love my view from this window.  In the summer, as now, it is full of green rolling hills.  The view reminds me of Ireland.  There are no houses in this view as we are out in the country on acreage.  The road is a gravel road with little traffic.  You can see hundreds of birds and rabbits, some pheasants, ducks, turkeys, and the occasional deer.

In the fall the leaves falling and the wind blowing are fascinating to watch.  In the winter the snow falling is mystical and can put most minds in a meditative trance.  And in the spring it is amazing to watch nature come back to life and the massive storms that blow across the prairie.

We use to joke about Joseph "staring" out the window or getting aggressive in the living room.  He would be standing on his head, upside down in a chair, rocking on the couch, in a chair or on the floor.  Or he would go to the other extreme and be staring in a trance unable to focus on anything going on.  I commented once that you were not going to get his attention because the wind was blowing and he saw a leaf blowing.  Now I know that this window over stimulates him.  This is why he has been trying to close it.  So, everyday now when he comes home from school I close the drapes.  When he is sitting in the living room falling asleep and asks me to close the gap, I do. 

Lights, windows, wind, sound......will I ever have him figured out completely?  Will I ever know how much he has suffered?  Autism truly is a puzzle.  I'm just getting the pieces lined up trying to figure out if I have the right ones or not.  It should be an interesting year.  I look forward to it.  I feel like I am understanding him for the first time in his life.

Monday, August 23, 2010

Temple Grandin

If you have not heard of her you have to read her story!  http://www.templegrandin.com/  She is severely autistic but has overcome her problems (they are NOT cured...she has just learned to deal with them) and she is now a professor and animal scientist.  She speaks at conferences across the country.  She is the speaker in the last video link I sent.  There is a movie out about her that is excellent.  We rented it yesterday and watched it twice back to back. 

When Joseph saw what movie I rented he asked me about her.  He wanted to know if she was a cowgirl.  I told him the truth.  He wanted to know what autism is and I told him it is something you are born with that makes you see the world in a different way than other people do.  He asked me if this is what he has.  I never lie to my children.  I honestly don't.  If they ask me about the "tooth fairy" or Santa or Easter Bunny I tell them the truth.  So, I gently said "yes, this is what you have but you will see that you can become!" 

I learned several things from watching the movie.  I see why certain things bother him and why he destroys them.  I am anxious to get him into the therapy to see what type of autism he has.  I think his strengths will be in music and math.  We will see.  Please rent this movie!  It is so amazing to look inside the mind of an autistic person.  I see the fear Joseph has been living with.  He, too, seems happy to know what is wrong and that we can do something to make it better.

Friday, August 20, 2010

Amazing Video

If you have the time I urge you to watch this EXCELLENT talk about autism by a woman that has autism.  She also happens to be an animal scientist!!!!!  It is over an hour long but is SO helpful in explaining what Joseph is suffering.  She even talks about the dreaded Wal-Mart trips!!! 

http://www.youtube.com/watch?v=2wt1IY3ffoU

The Diagnosis

After 7 long years of searching and pleading for an answer we finally have it.  Today we were given the diagnosis of full autism.  Yes, he had a brain injury which increased and even confused his symptoms of autism.  But what we are seeing now is autism spiraling out of control.  And because of the severity of his symptoms they are recommending he be put in residential care.  An evaluation and diagnosis package was sent to Boys Town today and they are saying this needs to be done quickly.  So the ball is rolling.....after a very long ordeal of seeking answers.

There is a light at the end of the tunnel.  And there is relief and joy on some levels. We are sad that Joseph will not be living with us for some time but we know that he will be happier.  I also can put my mind at ease that I did not cause this because of the pregnancy.  Joseph was born this way and there was nothing I could do to change it.  Early intervention would have made some difference but things are falling into place and time the way God has dictated it should be.  Although my family has suffered much, and so has Joseph, he has touched so many hearts.  Today one person after another came up and asked about him.  His teachers at school love him!  He is just a special little guy. 

We were told today that the test results from yesterday showed that he lives in a constant state of fear.  He is suffering probably just as much as we are.  So now his time has come.  He will be so happy and learn so much.  Our family will start to heal and we, too, will be going through a process of learning what autism is.  I saw a blog today from the family's point of view.  It is showing how it tears families apart.  80% of marriages involving autistic children fail.  But we have survived the worse.  And now we all begin to heal!  Thanks for the prayers and don't stop!!!!  You have been our cheering section and we love all of you so much!

Thursday, August 19, 2010

Catching Up

It was a long and hard summer.  I am still at a loss for words and I'm trying to digest all that has taken place.  I left off at week 2 of camp so I will pick up from there.  He finished camp with a bang!  It was wonderful to go spend the afternoon with all these beautiful children who are mentally challenged in one way or another.  Joseph did not even notice everyone's issues.  He won an MVP award for his love of baseball and in playing all sports that the camp offered. 

Receiving his MVP award!

After camp things went down quickly.  I tried to keep him busy and to not think about school.  I wanted him to enjoy his summer and just play....just be happy.  However, there were days of serious depression.  There were horrible meltdowns that got more and more violent.  There were new behaviors, some of them very disturbing.  He started turning more of the violence toward me and it was also getting worse toward his siblings.  Why????? 
Joseph at the Omaha Zoo

One day he had a horrible meltdown.  He attacked a sibling and when I came inside to care for the hurt one Joseph ran down the road.  We live on a hilly gravel road.  The thought of a vehicle coming over the hill and hitting him was in my mind as I tried frantically to take care of the other child.  One of the older children ran after him and caught up with him almost 1/2 mile down the road.  When he saw them he ran off into the woods so the teenage sibling came home distraught.  Joseph returned as quickly as he left and "hid" behind a tree.  Then it was all over.  But I am looking at the damage....the emotionally hurt child, the physically hurt child, the broken toy, the tears, the chaos....and I realize that nothing.....NOTHING has changed in the past year of therapy and treatments.

Passing the summer days in the family pool

Another day the meltdown lasted nearly all day or you could say he had back to back tantrums with 30 minute breaks.  At one point I was trying to do the bear hug from the back just to settle him down and he started biting me....a new behavior.  I actually put him in the car that day to bring him to the hospital.  I can not count the holes in the wall just from the summer months.  One is basically so huge you can stick a whole child into it.  He has broken down 2 doors to the point where the door jams are destroyed.  He has destroyed clothes because he rips them off when he is having a meltdown. 

First Day of School 8/17

He has also gotten very verbal.  He calls me and everyone that angers him an "idiot" or "from hell".  He says he wishes we were dead or that he will kill us.  He told me one day that he will not cry if I die but instead he will laugh and be happy.  Another day he said he was glad I was old and could not do gymnastics anymore.  :-)  These things really make me laugh but at the same time he says really mean and hateful things too.

Long story short, we have started the journey to put him in residential care.  It totally breaks my heart.  He is MY child!!!!  I love him with all my heart and I can not fix him!  I am more tormented by this than by anything.  I am removing him from our family life.  I am cutting him off from his support.  This is how I feel but I know this is not reality.  Reality is that I have other children to consider.  I think that Joseph will thrive in a highly structured environment that I can not give him.

A nice moment with the four youngest together

He has been talking all summer about the day he will get to go to St. Gregory's.  This is the boarding school his older brother attends.  I have not had the heart to say that he will never go there.  Now, I am telling him he will go a school like that but it's even better because he will be closer to us.  He is excited.  He asks everyday now if we are still looking for him "a St. Greg school"....to which I reply "yes" and he jumps up and down. 

I saw a quote recently that brought me much comfort.  "One cannot desire freedom from the Cross when one is especially chosen for the Cross." ~Saint Teresa Benedicta of the Cross.  I do not ask God to free me from this cross.  He chose me to carry this and I would suffer anything on earth for the love of God and for my children.  He is asking a lot of me....to give up my son.  But did He not ask The Blessed Mother to do the same?  Has He not asked this and more of so many mothers?  Joseph is my angel and I can't wait for the day to see him in heaven with a perfect mind.  He will not be in camo anymore!

Please pray for our family.  We are all hurting and suffering so much.  We love our Little Joe so much!!!!!
Today after testing, 8/19/2010

Thursday, June 24, 2010

Week 2 of Camp

Waiting for the shuttle


Joseph is loving camp.  Last week it took a few days to settle in and get used to the people and schedule.  This week he is riding on a shuttle to camp and seems to like that.  His only fear was that he could not rock when he was in the van because people would laugh at him.  I assured him that they would not laugh.  He does not even notice that all these children have disabilities in one way or another. 

He has not made a good friend yet but this is due to his autism and all the others around him suffering some social disorder.  I would imagine it makes it hard for them to really bond with one another.  He loves going on the field trips.  So far they have been to the movies, bowling, tractor museum and sprinkle pool.  He goes swimming on Tuesdays and Thursdays.  Today they are having a jumping house which he has been looking forward to since day one!!!  Tomorrow they are going to the zoo.

I don't know what I will do once camp ends on July 9th.  I have to find something to keep him busy.  Then it will be time to get them ready for school.  Right now, SumFun is having a great influence on him!  I can't say enough about this camp, the counsellors, and the beautiful children!!

Sunday, June 13, 2010

Camp

By a total miracle I found a camp for Joseph!  It starts tomorrow and goes for four weeks.  It is a day camp for children with mental disabilities.  They will take them swimming, to the zoo, to the movies, do arts and crafts, play games, etc.  I can not even begin to express his joy over getting to go.  It is all he has talked about over the weekend.  I actually found all this on Thursday and although was late on signing him up they took him right away with no money down.  We found out that his respite care would cover some of the costs of his camp and my mileage.

So tomorrow starts a wonderful adventure for Little Joe.  We are finding that there is so much more available to him now that he has been officially diagnosed as disabled.  So we are thanking God for the small blessings at this time.  I will post pictures and daily updates of his camp adventures in the days to come.

Wednesday, June 9, 2010

Lost

Swimming

School has been out a few weeks now and our poor Joseph seems to be lost.  I am not a parent that wants my children to be away from me all the time.  Actually, I'm enjoying the time with the other children.  But Joseph would do much better going to school all summer.  It made me start wondering why special ed children who seem to thrive on routine and schedule are given 3 months of free time?  Why is there not more for these children?  I started trying to find something for him to do to fill in his time.  I came up with a schedule of fun activities for each day of the week thinking that keeping him busy would be for the best.  But it is impossible to do 24/7.  So my difficult hours of 4 to 6 p.m. (after school hours) has now turned into several hours a day that he has time to meltdown as my attention has to be given somewhere else.

I started looking for camps he could attend.  It got us involved with the brain injury group here in Nebraska.  They do not have any such camp for children but at least it got things moving.  I got in touch with the disability department of the state to see if they offer anything.  Upon reviewing his medical history we discovered, or should I say REdiscovered, that he has an official diagnosis of autism.  So that opens more doors for us as there are camps for autistic children.

One thing that he loves doing is going swimming at the YMCA.  He learned to dog-paddle very well in his  swimming lessons.  He gets to go down the slides now because he can make it to the side of the pool well enough.  We also do library days and he enjoys this.  Yesterday we enjoyed a day at the park with friends.  The key seems to be keeping him as busy as possible.  But once the moment arrives in which he realizes he misses school he gets upset.  He does not understand that this is a really long extended "holiday".  He gets excited for Sunday mass because he thinks Monday he is returning to school. 

He is regressing in many areas especially in his physical abilities.  I will be contacting the hospital today to get him back in PT and OT over the summer months.  I am seeing many left side issues again and this is being witnessed by friends.  His left foot is turning in again.  There is more drooling.  He started playing with his gums and this has caused an infection in his mouth. 

There have been some touching moments I have been able to witness.  Sometimes he is so aggressive that it scares me for the other children but then when all seems hopeless I see him sharing with his siblings.  Or yesterday I saw him pushing his little sister on a swing.  Or I see him console a sibling after they have been corrected by mom or dad.  Those moments are few but are priceless.

So today we will deal with today and not focus on tomorrow or next week or next month.  I am turning to the older siblings and asking for them to each take a day to help with him.  He needs undivided attention from some source and with so many other children I can not do it.  He misses his teachers so much.  If you are reading this he misses you and loves you!  He is longing for school to start!  You gave him so much joy this past year and you have become such a huge part of his life.  May God bless you for all you have done for him and our family.  Good teachers are a gift from God! 

Wednesday, May 5, 2010

One Step Forward, One Step Back

It seems you can never get ahead by following these steps but it's what we have been dealing with.  How much longer will he continue on this path?  Forever?  Or will things improve?  We had made so much progress.  It was amazing that he was behaving so well.  He was doing great in school.  He was being kind to his siblings.  He was even problem solving.  He was so good at mass that he started practice to serve the alter.  And then Sunday........

I saw aggression.  He became very emotional.  He would start crying at the drop of a hat.  He would not fall asleep even though he was heavily medicated.  The teacher reported today that he was all over the place and not focused.  They said they saw aggression.  What changes the forward progression?  There are no answers with this condition.  No way to plan tomorrow and no way to avoid taking the steps back.  It breaks my heart for him.  He wants more than anything to play football and to serve the alter.  I hope that he gets the chance to serve as football is forever out! 

Besides the emotions and behavior he has slipped in his memory.  We were walking into the Y Monday and he wanted to know "when are we going to the Y?".  He is having trouble again with being able to say what he is thinking so it comes out very bizarre and hard to follow.  It will come out something like this:  He wants a ham sandwich so he will ask for one of those square things that have that meat stuff in it and that white soft stuff on the outside.  If it's lunch time you can figure that one out after a few attempts.  But the other things that come out are so hard to follow that some of it we never figure out. 

It must be frustrating for him.  Perhaps this is the reason for the emotions and behavior.  Perhaps he knows that he mind is not functioning correctly and he gets frustrated.  Perhaps he is suffering what we don't see and his behavior is the message to us that things are not working correctly.  Perhaps he is unaware of what is going on.  Perhaps tomorrow will be better.  Perhaps.....

Wednesday, April 14, 2010

What We Live With

An article on the web disecting the problems of TBI.  Joseph deals with a HUGE set of symptoms listed below.  And as he grows we continue to discover new problems.  However, some things do get better as he learns his limitations. 



Patients with moderate to severe TBI have more problems with cognitive deficits than patients with mild TBI, but a history of several mild TBIs may have an additive effect, causing cognitive deficits equal to a moderate or severe injury.


Many TBI patients have sensory problems, especially problems with vision. Patients may not be able to register what they are seeing or may be slow to recognize objects. Also, TBI patients often have difficulty with hand-eye coordination. Because of this, TBI patients may be prone to bumping into or dropping objects, or may seem generally unsteady. TBI patients may have difficulty driving a car, working complex machinery, or playing sports. Other sensory deficits may include problems with hearing, smell, taste, or touch. Some TBI patients develop tinnitus, a ringing or roaring in the ears. A person with damage to the part of the brain that processes taste or smell may develop a persistent bitter taste in the mouth or perceive a persistent noxious smell. Damage to the part of the brain that controls the sense of touch may cause a TBI patient to develop persistent skin tingling, itching, or pain. Although rare, these conditions are hard to treat.

Language and communication problems are common disabilities in TBI patients. Some may experience aphasia , defined as difficulty with understanding and producing spoken and written language; others may have difficulty with the more subtle aspects of communication, such as body language and emotional, non-verbal signals.

In non-fluent aphasia , also called Broca's aphasia or motor aphasia, TBI patients often have trouble recalling words and speaking in complete sentences. They may speak in broken phrases and pause frequently. Most patients are aware of these deficits and may become extremely frustrated. Patients with fluent aphasia , also called Wernicke's aphasia or sensory aphasia, display little meaning in their speech, even though they speak in complete sentences and use correct grammar. Instead, they speak in flowing gibberish, drawing out their sentences with non-essential and invented words. Many patients with fluent aphasia are unaware that they make little sense and become angry with others for not understanding them. Patients with global aphasia have extensive damage to the portions of the brain responsible for language and often suffer severe communication disabilities.

TBI patients may have problems with spoken language if the part of the brain that controls speech muscles is damaged. In this disorder, called dysarthria , the patient can think of the appropriate language, but cannot easily speak the words because they are unable to use the muscles needed to form the words and produce the sounds. Speech is often slow, slurred, and garbled. Some may have problems with intonation or inflection, called prosodic dysfunction . An important aspect of speech, inflection conveys emotional meaning and is necessary for certain aspects of language, such as irony.

These language deficits can lead to miscommunication, confusion, and frustration for the patient as well as those interacting with him or her.

Most TBI patients have emotional or behavioral problems that fit under the broad category of psychiatric health. Family members of TBI patients often find that personality changes and behavioral problems are the most difficult disabilities to handle. Psychiatric problems that may surface include depression, apathy, anxiety, irritability, anger, paranoia, confusion, frustration, agitation, insomnia or other sleep problems, and mood swings. Problem behaviors may include aggression and violence, impulsivity, disinhibition, acting out, noncompliance, social inappropriateness, emotional outbursts, childish behavior, impaired self-control, impaired selfawareness, inability to take responsibility or accept criticism, egocentrism, inappropriate sexual activity, and alcohol or drug abuse/addiction. Some patients. personality problems may be so severe that they are diagnosed with borderline personality disorder, a psychiatric condition characterized by many of the problems mentioned above. Sometimes TBI patients suffer from developmental stagnation, meaning that they fail to mature emotionally, socially, or psychologically after the trauma. This is a serious problem for children and young adults who suffer from a TBI. Attitudes and behaviors that are appropriate for a child or teenager become inappropriate in adulthood. Many TBI patients who show psychiatric or behavioral problems can be helped with medication and psychotherapy.

Friday, April 9, 2010

Feelings

This is something I'm trying to understand and yet it is so puzzling.  When I die I pray God gives me 5 minutes to experience what Joseph feels like everyday just so I can finally understand.  He suffers from vestibular dysfunction which means he does not feel his body in space and time.  When they were evaluating him at Madonna they got him to lay flat on his back and close his eyes.  They lifted his left leg up and asked him if his leg was up or down.  He did not know.  So being that he does not sense his body and it's place in being he is always moving so that his brain can register the fact that his body IS present and accounted for.  Sounds strange, huh?  Hard for those not impaired to understand.  He even has to move in his sleep.  It seems sometimes he is having seizures just from the movement he makes at night and this is under heavy sedation.

A new discovery I made just yesterday was while cutting his finger nails.  I was holding his hand in mine and he asked me if I was cutting his nails or mine.  Same for both hands.  He could not feel me cutting his nails.  He made a discovery on his own.  He said he figured out what was making him sick on the bus.  He said it only happens when he plays video games on the bus.  A little boy was sharing his Gameboy with Joe and he would get sick from the movement of the bus while watching the movement of the video game.  I think this is more due to the sensory issue than to the vestibular issues.  Regardless, movement is something that is as necessary to Joseph as breathing is to us. 

He does not feel intense pain.  But he feels the small things and this drives him crazy.  He went outside barefoot and got a pretty bad cut on his foot.  Doesn't bother him.  I'm glad I saw it and cleaned it.  But if he gets a little scratch it will drive him nuts.  The doctors at Madonna say this is sensory issues.  He was complaining of itching skin.  This was mid-winter so everyone in the state of Nebraska is itching.  But it was like a plague to him.  So they wanted me to take him to the doctor not only to document but to make sure he was not having an allergic reaction to something.  No, the itching was fine BUT he had a HORRIBLE ear infection.  Doc was surprised he had not complained.  Joseph sat there saying it didn't hurt.  He had a busted eardrum but it didn't hurt.  All he cared about was the itching!  :-)  Life with Joseph.......

His teachers at school, God love them, have made changes to the classroom to help him deal with so many issues.  He was hiding under his desk to do his work because he would say the lights were too bright.  They have now put lamps in the classroom and keep the lights turned down. 

Easter

It was amazing how well Joseph did this past Easter weekend.  We had a lot of company in and out of the home and yet he stayed pretty focused.  There were just the typical issues with him being too loud, hyper, or complaining but nothing huge.  He slept through Good Friday services.  We skipped Easter vigil this year as we have learned there are limitations that we just have to follow.  He did very well Easter Sunday at mass.  I kept thinking it was like a little Easter miracle.  But then....the normal routine kicked in and he was out of it. 

It dawned on me half way into this past week of why this was happening.  He thrives on novelty for short periods of time.  It is the readjusting to schedules that throw him off.  It's the back and forth.  So we have spent this whole week trying to get him back on schedule.  There has been a huge increase of smelling and licking his hands.  His teachers at school have started to give him things to chew on at school.   They say this has helped.  We are getting closer to the home assessment.  We will do it on a pretty and warm Saturday in the near future.  I'm trying to get him into a summer program that is a daily class but I'm not getting my phone calls returned.  I will keep trying.  I think he will need to stay very busy during the summer months.

Monday, March 29, 2010

At Boy's Town

This was when we went to hear Mattie sing last weekend.  It was a huge theater.  I did not think about it bothering him.  He liked it when the band played as the drew his attention to the sounds of the instruments but with the break in between the band and choir he got very frustrated.  He could not sit still, of course.  But...it was the drive home that was so horrible.  He had held it together for over an hour and then once it was over he was VERY hard to deal with.  That's our Joe!  Here he is trying to control himself during the concert.

Yogurt and Plumbing

In our crazy world of raising eight children and in daily dealings with Joseph, we have encountered too many plumbing problems to list but this one deserves special recognition.  This is the second time we have had this exact scenario but this one was a lot more costly and frustrating.  He is in the habit of constantly stealing food.  I say "stealing" in the sense that he is always secretly getting food in between meals and hiding it from us.  He is a master at sniffing out things that we have done our best to hide. 

Saturday he got one of the small single serving containers of yogurt, went into the bathroom to hide and eat, and then to conceal his crime he flushed the container down the toilet.  I should say he attempted to flush it down.  We learned the first time this happened that the single size containers are a perfect fit.  But when it comes to the curves in the plumbing you can hang it up.  There is no plunger in the world that could unstop this clog.  So for the second time in a few months dad had to remove the toilet and try to get the container out.  Only this time the toilet could not be removed due to age and constant overflow problems.  The toilet cracked. 

Now all this would have been bad enough but this was Saturday afternoon about an hour before company was due to arrive for lunch.  We had invited a new family moving in from California to come have a meal with us and meet our family.  The house stuck like a bus bathroom and there were no toilet facilities.  You just have to love our crazy life! After all was said and done it was around $150 dollar disaster.  I wish we could afford one of the toilets that can flush bowling bowls....and stuff like that.

We are still dealing with a lot of aggression and violence.  One thing that seems to help is listening to music in headphones.  It helps him ignore all the stimuli around him.  We had a hard day yesterday with a trip that was 2 hours one way.  He did well. 

I am signing him up for Special Olympics.  We are looking for a babysitter that we can bring him to when things get crazy around here.  He needs an escape plan for when things get too stressful for him.  Still waiting to hear something on the disability and the home assessment.  I will be calling today to see if I can get him into a summer day program.  Doing that and the therapy at Madonna will make it a very busy summer for us.  Hopefully we will get through it with few problems.

Sunday, March 21, 2010

Hard Week

It has been a really hard week with our little angel.  He has truly been in camouflage this weekend.  It is hard to say why or when these bad times will occur.  We have yet to figure out all the triggers.  One thing is that he needs to be left with a babysitter as much as possible.  He gets overstimulated with the other children.  The more chaos around him the more frustrated he becomes.  And there is always chaos with this many children.  He would do better in an environment without other children. 

We have qualified for the respite care so now the job of finding someone to watch him will begin.  We are also continuing to fill out papers and answer questions regarding his disability income.  This would be a huge help in getting things "Joseph" proof.  He is doing really well in school.  He is doing more than anyone believed he would be able to do when he first started.  He is still on a Kindergarten level but has even moved up to lower first grade level in some areas. 

He is dealing with a lot of different sensory issues right now.  He smells his hands constantly.  He is starting to taste and lick everything.  And he is getting more aggressive.  That is the part that scares us the most. 

I've come to the conclusion that there are no answers anymore.  It changes daily.  No one knows what tomorrow holds.  So all we have is prayer.  I have to pray that God heal his mind or I have to pray that I have the strength to do what I have to do. 

Friday, March 12, 2010

July 9th, 2008

I lost what little bit of that slow but sweet little boy I had in a matter of 2 seconds.  Because of the lack of oxygen at birth Joseph had suffered some brain damage that would make learning, especially in the area of communication and reading, very difficult.  He was also very immature as far as his age and decision making.  But I could live with this.  He was just a big sweet boy that would need mom and dad a little longer than the others.

After the first fall off the bleachers I did not notice any changes until years later and looking back.  After that fall was when he started drooling a lot and became very clumsy.  He was always falling and hitting his head or getting a black eye.  And these injuries, after looking back at pictures, is most always on the left side.  It was years later that we would learn the brain damage is in the right lobe causing him a lot of physical issues on his left side.

On July 9th I left to go 2 miles down the road to a mission mass at the convent.  It was a mission for Our Lady of Mount Carmel and I wanted to hear a newly ordained priest give the sermon.  Something told me to not go.....I even stopped the car in the road, looked back, and then put my trust in God.  In the middle of the mass someone came to me and said my husband needed to see me outside and it was an emergency.  He had Joseph with him.  Joseph was acting strangely.  Trying to cry for me but sort of unable to get it out.  He was shaking and scared.  David tells me that Joseph has fallen out of a tree directly onto his head.  He said it knocked him out and then he was unable to move.  He was not sure if he should drive him into the city or just get our doctor, who was at the convent with me, to look him over.  I went and got our doctor and friend and he said that Joseph had a concussion.  He said to take him home and keep him still.  He said this is what they would tell us at the ER so we followed his advice.

I only stress this with the doctor's advice for my own benefit.  It reaffirms that we are not bad parents.  And the doctor, who is a dear friend of ours, is not a bad doctor.  We really thought it was a small concussion.  All Joseph needed was some bedrest.  He would be fine in a few days.  I don't think going to the ER would have made much difference but I would have it documented.  I would not second guess myself.  I would have had answers sooner.....perhaps.  But who knows?  Again, I don't believe in accidents.  All things happen by the will of God! 

The story from the children that saw the fall would replay in my head over and over as I tried to forgive myself for not being here.  Joseph, who never had developed a good sense of judgment, climbed up a tree and out onto a branch to get an airplane that had gotten stuck in the tree.  He was about 20 feet high and crawling out on the branch upside down hugging it with his arms and legs.  The branch broken, he let go, and he fell directly on his head.  He was knocked out for a minute or so.  And then he was temporarily paralyzed.  I would learn later that these are signs in determining how significant the injury is.  After several minutes he was able to walk a little and that is when David brought him to the convent.  There was no vomiting.  Wasn't I taught that was the dangerous thing to look for?  Don't let them sleep and if they start vomiting get them to the hospital!?!?!  But he wanted to sleep so badly.  I could not keep him awake.  I called the doctor and he said that was fine.  He needed to sleep so let him sleep.  Just watch for vomiting and headache that won't go away.

No vomiting.  He never complained of a horrible headache.  I gave him Tylenol and let him sleep.  We have only just discovered that Joseph does not feel extreme pain.  He could have had a horrific migraine and never told us.  And if he didn't feel the pain then he would not vomit.  So for two days he slept off and on.  I gave him Benedryl when he wanted to try to move around too much because I was told to keep him down.  The last thing he needed was another head injury. 

July 10th, the day after

A week later we noticed he was drooling a lot.  Then he started acting so violent.  Where was this coming from?  Then he started saying things he had never said before.  He was having horrible meltdowns.  He started behaving in ways we had never seen.  He started talking about  inappropriate things.  There was strange behavior...things we could not explain.  They looked bizarre.  He would not like a food one day and demand it the next.  He would forget people or places.  He would be scared of wood.  Or he would touch things that were hot or poky.  We later learned these were sensory issues.  And then he started the rocking.  If he sat, he rocked.  He rocked back and forth with a lot of force and energy in the van, on the couch, in the church pew, on the floor, etc. 

When I started homeschooling classes again in the fall it was obvious something was very wrong.  Everything he had learned the year before was gone.  He was already grossly delayed.  He did not need this!!!  I could not take anymore.  I cried.  I was frustrated.  I was confused.  I started making phone calls.  That landed us at the Barkley Center for testing.  And this was the first time I heard "TBI...traumatic brain injury".  I thought that was a little far fetched.  He had no brain injury.  Kids in car wrecks get that.  He didn't even get a cut on his head.  He was always slow.  Maybe his anger was just that he was getting older.  Maybe he had some autism after all.  But brain injury???  From the fall that was now more than 6 month old?  I found this hard to believe.  We had an MRI done.  It was normal.  See?  No brain injury.....right?  Maybe he was just ADHD.  So we took him to a doctor for that.  He said TBI and, it just so happens, that ADHD is usually a symptom in children with TBIs.  Meds were given to help him sleep since he never slept.  Yep, another symptom of TBI.  He had ground his teeth down to the point some of them were breaking.  Yep, another symptom.  And the drooling was another symptom.  Ok, but........he has done that since he was little.  Oh....you mean since the FIRST head injury?  Wait a minute!!!!  Telling me my child has one brain injury is bad enough but two!?!?! 

After months of going from doctor to doctor we ended up getting sent to Madonna Hospital for evaluations.  It was confirmed.  My little boy had brian damage.  I will break his problems down later but I must run now.  I have a meeting for his disability this morning.  Prayers would be appreciated since most people get turned down their first time through.  And then I've promised them a swim at the Y when I get home as they are all out of school today.  He starts swim lessons the beginning of April so I want him use to being in the pool.

Thursday, March 11, 2010

Heaven's Special Child

HEAVEN'S SPECIAL CHILD

~Author presently unknown


A meeting was held quite far from earth,
It’s time again for another birth.
Said the angels to the Lord above;
This special child will need much love

His progress may be very slow,
Accomplishments he may not show.
And he’ll require extra care,
From the folks he meets down there,

He may not run or laugh or play,
His thoughts may seem quite far away.
In many ways he won’t adapt,
And he’ll be known as handicapped.

So let’s be careful where he is sent, we want
His life to be content.
Please, Lord, find the good friends who,
Will do a special job for you.

They will not realize it right away,
The leading role they’re asked to play.
But with this child sent from above,
Comes stronger faith and richer love.

And soon they will know the privileges given,
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
In Heaven’s very special child.

Feb. 2010
Swimming at the YMCA

Joseph Michael

I started this blog today as I'm dealing with a lot of heartache over Joseph. It helps me to write. But it gets so hard to constantly update family regarding life with Joseph. So this blog stands separated from the family blog. To those that don't know Joseph I will now introduce him. He is the sixth child out of eight. He was born in October 2001 which makes him 8 years old today. He was born 5 weeks early. We had a homebirth planned with a midwife. My monthly visits with her would show that my blood pressure, which was always high during pregnancy, was off the charts. The midwife would make excuses saying that her reading may be off. It was only after Joseph was born and upon questioning that it was revealed by the midwife that her urine test sticks were not good and never showed the protein deposit readings.

The day before Joseph was born I called the midwife feeling that something was very wrong. I was so swollen I could not bend my knees. I had a headache that would not go away and felt that movement was slowing. She came out to the house to check me and my blood pressure was at stroke level. I should have been rushed to the hospital right away but was told to just stay in bed and not get up for anything. I followed orders but when I became too uncomfortable in bed I moved to the couch in our bedroom to sleep. Around 3 a.m. I woke with a headache that can only be described as the worst I've ever had. I thought I had been hit over the head with something. I stumbled to the bathroom feeling drunk and dizzy. I leaned on the wall to keep myself from falling. It seemed like a long time before I made it back to the couch but as soon as I did my water broke. Joseph was on his way.

I did not go to the hospital because I miraculously started feeling better. When the midwife got there my blood pressure was almost back to normal. We decided that after listening to his heart we were safe and would stay home without hospital and medical intervention. Joseph was delivered by his father with the cord around his neck two times. His apgars were low...6 and 7. But still, he was 6 pounds and crying. He was alive and I thought well. He was really red....and tiny. Was he really 6 pounds? He made a funny noise all night long. It was almost like a little puppy dog. Every time he would take a breath he made a funny sound. And he was not nursing. But he was okay.....I kept telling myself that. I prayed all night long as I watched him breathe. We took him to the doctor the next day. He weighed 5 pounds but he was given a clean bill of health. The funny breathing had stopped. Things were good.

Would have going to the hospital changed things?  I will never know.  Getting my blood pressure down early would have but would it have changed who Joseph is?  I don't think so because there are no accidents with God.  Joseph is exactly what God created him to be.  Yes, these questions will drive me crazy if I think about them too much but I have found peace knowing that with just a word God could have changed the outcome for better or worse.

I knew right away something was not right but figured that Joe was just going to be slow.  He was not talking at the age of 3.  He was not even babbling a word.  Not even momma.  I would do little tests on him to see if it was his hearing.  He seemed to hear fine but would often act as though he could not hear.  I would check the symptom lists for autism.  He did not fit any of those.....at least completely.....yet.  I kept thinking that if 90% of the checklist was postive than he must have autism but then he would do something that would suggest otherwise.  He was just slow in his thinking. 
First Birthday 2002

He first fell in June 2004.  He followed the older kids to the top of a set of bleachers at a baseball game.  As soon as he sat down he fell backwards directly onto the top of his head landing on concrete.  It was heard by all that were sitting around the area.  Incredibly,  he showed no signs of concussion or trauma.  He was checked by a paramedic on the scene.  Not until later did I remember the sleepless night of endless crying.  I blamed it on being in a hotel room on a hot southern night....and maybe it was.
3rd Birthday - after the 1st fall

And then came July 9, 2008.