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.

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. 

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.

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.