Walk For Joseph (and others with autism)

Team Camo Angel

Please click on the above link to donate to Walk Now For Autism Speaks.  If you would like to join Joseph's team please feel free to do so and then you can get others to donate.  Anyone in the Lincoln area is asked to come join us October 9th to walk for this cause.  Thanks so much for all your love, prayers, and support! 

"Autism is anxiety looking for a target"

The quote is by the renowned autism expert Tony Atwood.  I ran across it on website after website after doing a search on Joseph's anxiety issues that appear to get worse with time.  We are going through night problems again.  If there is thunder or lightening he is terrified of tornadoes.  If he has a dream about anything at all that could cause worry he is waking me asking questions to ease his worried mind.  He had a dream about a tiger and was full of questions about mountain lions in Nebraska.  Could one get in the house?  But what if it did?  Do they kill you?  Do they eat you?  What if it was in the yard hiding and waiting?  (yes, he stayed inside that day)  And so this is how my nights go.

But for the past couple of months we have moved into what I call "confessing anxiety".  He tells me everything that he does that may be wrong or that I may get upset about.  He will tell me that he spilled some water but he cleaned it up.  Or that he got a "cracker without asking....is that okay?".  Or "I went in the front yard but then remembered I wasn't suppose to be and went back to the backyard."  Or "I got mad and pushed Jerome.  I'm sorry.  Are you mad?".  Or my favorite, "Mom, you know how you get mad at me when I stick my feet under the rug in the living room?  Well, I did that the other day when you weren't looking."  This goes on all day.  So I asked him one day why he feels he has to tell me all these things. 

He told me that if he didn't tell me then it would be lying.  I tried to explain that it would not be but to him it is and that is the end of it.  He feels if he does something wrong and hides it by not telling me then he is lying and that is more wrong than breaking the rule.  I don't know if it will just disappear as so many strange behaviors have in the past or if we need to address it in his therapy sessions.  He told his med doctor that the reason he doesn't sleep well at night is because he is scared of death.  He said he is scared he will die in the night or that I will die.  So he wakes up all night and checks to make sure everything is okay.  He wants me sleeping in the living room right outside his bedroom so that when he goes to the bathroom or gets up to get water he knows I am right there.  I tried sleeping in my room last night and on the fourth time he woke me I decided to move back to the couch.  "Mom, is it almost morning?  Will it be in an hour?  I spilled some water but I cleaned it up.  Mom?  Mom!  I hear thunder!"

Anxiety.  The child.  The parents.  The siblings.  The teachers.  "Autism is anxiety looking for a target."  This is our life with Joseph.

UPDATE

Summer Fun With Sibs

It has been so long since an update!  I feel as though we had nothing but bad news to report for so many months that it was too depressing to sit down and rehash it all on the blog.  Now things are looking so much better.  After his hospitalization we received in-home therapy.  This was beneficial to the whole family.  We started putting in place some strict guidelines for Joseph and learning to be consistent and stick to the rules and punishments.  I also learned that many of the organizational ideas I had in place years ago while I was homeschooling was very much needed in order for Joseph's life to run in a simple way that he could understand.

He was hospitalized again after another violent meltdown and it was decided then that we would do a med wash.  His therapist and I felt that the severe meltdowns were being brought on by the psychotic medications that was currently taking.  We also got an appointment for him with Munroe Meyer Institute for a full diagnostic workup.  By the time of his appointment in April we had him off 90% of his medications and I was shocked at the change.  He went from angry and aggressive to my "normal" autistic little boy with lots of confused frustration.  The days were still so stressful.  Meltdowns were still common.  But the difference was that I could communicate with him.  The only downside to the lack of meds in him was his insomnia, which is severe.  So I kept him on the Seroquel even though this is not a sleep medication.   We were hoping that the appointment at Munroe Meyer would do several things, one being that they would remove the diagnosis of autism.  I have gone back and forth with doctors and therapists over this one.  I believed when he was a baby that he showed all the signs of autism and took him to doctor after doctor with no one listening.  But then it all changed and he appeared to have more behavioral issues.  Autism also affects his insurance coverage and future help as an adult with any residential treatment, if needed.

Munroe Meyer put together a team of doctors in various specialties that observed and studied Joseph.  My hopes were that they would remove the autism diagnosis, put him on the medications that would help, and give me a plan that would solve all our problems.  Basically, I wanted answers and a cure.  Well, none of the above happened.

Joseph's official diagnosis, which can not be removed now that it was done by this group, is autism with a brain injury.  Their plan of action?  Take him back to Lincoln and start with a new set of doctors and therapists.  They believed that the bi-polar diagnosis was made after he started taking the mood altering drugs and not a well founded diagnosis.  I agreed with this as I had already seen a difference in him since we got off all the meds.  They also agreed that he needed a different sleep medication.  And they ordered a full autism evaluation with a Neuropsychologist.  So we began another chapter.  I was so sad and felt that at this point I was truly out of hope.  I knew I had gone as far as I could for answers.

It took a few days but then I felt an incredible peace.  God had given me my answer and now I had to learn to deal with it.  And we had a plan.  It was time to move forward.  We went for the evaluation which was more testing for a whole day.  This doctor told me that he does not like throwing the autism diagnosis around.  He felt, like me, that everyone was getting labeled with something and using that as a crutch....and excuse....instead of accepting responsibility.  He feels that the whole autism spectrum is being way overused.  At first I felt excited thinking that he would NOT diagnosis Joseph with autism but then scared that he would come back and tell me that Joseph just had horrible behavioral problems that would plague us for life.  He came back with the same exact thing as Munroe Meyer and Madonna Hospital. 

He said that Joseph was classically autistic and that the brain injury made it all look "different".  He said that was the reason for the confusion on the diagnosis and why the "crazy" doctor put the bi-polar label on him.  He said it was not surprising many of the therapists and doctors were not sure of the autism diagnosis without doing an in depth evaluation.  He said the brain injury made the autism look different.  He agreed with everyone that it was a complicated situation.  In his words, it is "very complex".  I can't express in words the pain a mother feels in her heart when she hears these words.  In my case, I know my son's "very complex case" is not life threatening.  He is not being diagnosed with a brain tumor or some other terminal illness.  My heart aches for the mothers of these children.

So today we have a new team of doctors.  He is seeing a therapist that he really connects with and likes.  The new psychiatrist is focusing on the ADHD and NOT behavior.  It is amazing!  They have him on Intuniv which helps him to focus.  Then I can put into place what we are learning in therapy.  And then he is on real sleep medication so he is sleeping well at night.  Sounds simple enough and it's working!

Since taking him off the medications I see his autism again.  It is obviously there.  And I see the effects of the brain injury.  His gait, his smile, his eyes....all effected by the weakness on his left side.  We have had a wonderful summer.  Although we have had some upsetting moments, such as moving, we have had many wonderful moments.  We have gone fishing, camping, swimming, and just returned from a day trip to an amusement park! 

So I think we are up to date now and I hope to start writing daily.  I have been encouraged to write a book about my journey with Joseph and I will use this blog as a guideline.  There are so many funny things in our life with Joseph that brings a smile to my face almost daily.  His questions that never end turn into a comical moment.  His concerns over things the rest of us don't even notice touch our hearts and bring tears.  I would love to have the energy at the end of the day to write down everything he said or did that day that brought us out of our shells of "normalcy".   I would have a book written in a week's time. 

One enduring thing he said the other day was that he loved his little brother so much and they were such good friends that they were going to live together when they get older.  He said even if Jerome got married he could live with them and still be friends.  That was a tear moment......for you wonder.......is this a prophecy of his destiny?

Brothers.... and friends



Camouflage Angel

Just like the rose plagued with a thorn
Dear little child, you were born.
Most beautiful rose, sharpest vine
Most beautiful child, autistic mind.

You're a Camouflage Angel
The most innocent rebel.
You don't mean the things you say and do
So little brother, I love you.

Little boy who can't find joy.
Child's mind with a worry line.
Mischief in everything you do
But Jesus always loves you.

You're a Camouflage Angel
The most innocent rebel.
You don't mean the things you say and do
So little brother, I love you.

Mommy and Daddy can never make you see
What you mean to them....what you mean to me.



~Words and music by Mattie, Joseph's older sister