Wednesday, April 2, 2014

Expect the Unexpected

Yesterday morning I was seriously dragging.  I was sitting there trying to decide if I should have coffee or take a shower first.  I had no energy to do either one.  Let me tell you, newborns are for young parents!  This older mom needs her 5 hours of sleep.  I guess we need to get used to it because DSS never called on Monday after court.  Actually they didn't call on Tuesday either.  Finally I got a call this morning as I was contemplating coffee asking me to bring him in for a visit, they forgot to mention it to me.  I missed my coffee and was out the door taking Little Man to DSS.  While there I learned that he will not be going home any time least 6 months.

Anyways, back to yesterday.  As I was sitting there needing a shower and coffee the phone rang.  It was Dr. West's office calling.  We have scheduled assessments for Anthony and Larissa in August.  They had a cancellation and asked if we could bring one of the kids in within an hour.  (It takes an hour for us to get there.)  So with no shower and no coffee I ran out the door to get Anthony.  I considered his issues to be higher priority.

Dr. West has seen Anthony since 2006 so he has all his history and results of previous tests.  He sat and talked with Anthony and I for quite a while.  We discussed the problems with school, inability to start and finish a task within a normal time frame, inappropriate talk at home and school, his flat effect, social issues and all his medication changes.  Anthony answered his questions but sometimes seemed totally off subject. He gave Dr. West his famous blank stare when given a questions he struggled to answer. At one point Dr. West looked at me and stated that he wasn't going to do the testing that he had planned because he thought that things were going a totally different direction.

He came back and had me fill out a form that I had never filled out before...Inventory of Executive Function.

Oh my!  Just about everything on there except for problems with handwriting fit Anthony to some degree. I was difficult to finish.

He gave Anthony some tests and after a while came back with the results.  He believes that Anthony has brain damage.  He thinks that Anthony was a shaken baby and has frontal lobe damage.  This is hard to see on an MRI now because of the time that has gone by.   We are now looking at encephalopathy DSN 348.3.  This took me in a totally different direction than I had expected to go.  I had hoped to get some answers but I was shocked by this.  It actually answers a lot of questions.  It is also an area that I hadn't really looked at.  I have looked at frontal lobe damage because Larissa's seizures on in her frontal lobe.

He also asked me about speech.  The school in Texas said that he had extreme expressive and receptive language problems.  When we moved to SC they tested him and said that he didn't have any problems and took away those services.  I have been fighting them on this issue ever since then.  He articulates fine and has a huge vocabulary.  However, I think, and have always thought, that he doesn't always comprehend.  Dr. West says that Anthony needs speech.  We may have to go somewhere else for help with that.  He said that Anthony can understand the command of put a red block and a white block in the box.  However, if you say put the red block in the box after the white block he does it wrong every time.  He gave a long list of words that Anthony didn't understand.  I don't understand how the Texas schools caught that and Dr. West catches it but our school doesn't.  I requested a speech evaluation for this IEP so I will be curious to see if they say that he doesn't have any problem. Dr. West says that the problem may be that Anthony presents himself well and had a huge vocabulary.  It is sad when you feel as though you have hurt your kid because you speak in full sentences at home and use a lot of variety in your vocabulary.

Anthony has an IEP meeting next week and I have been promised the report by then.  If not, we will have to reschedule the meeting.

Anthony and I took off to eat some Schlotzsky's on the way home.  All the way I was in shock.

I have been researching frontal lobe damage, long term effects of brain damage, shaken baby syndrome, encephalopathy.  So much information that I am still processing.  Frontal lobe damage would explain the executive functioning problems and even the inappropriate talk.  Brain damage would explain his inability to start and finish a task, he inability to self motivate.  It actually explains a lot about Anthony.  I talked with his teacher today and will try to reach his resource teacher tomorrow.  I want them to understand where Anthony is coming from and think of some ideas on how to help Anthony to achieve all that he can.

In the meantime Dr. West will call me when he has the next cancellation.  He wants to see Larissa.  The 4 month old who came to use with her head cocked to the side, her arm tense and straight with her hand in a tight fist, with no neck control and poor sucking ability.  The child who has seizures coming from her frontal lobe.  I wonder how that meeting will go.


  1. We never know what these kids have been dealt.

  2. Such difficult things to research and see for your child. But oh my FINALLY have answers after all you've been through trying to figure things out with Anthony. I'm praying Dr. West will be able to see Larissa soon, too. I wonder if she experienced brain damage like this, too.

  3. Executive dysfunction is something I have looked at a lot with my twins. . . It seems to fit.