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