Give him a break. PLEASE!

And here we go again.  I had a very emotional week this week after all of Connor's therapy sessions.
On Monday, during speech, I was concerned with Connor regressing from some of the sounds he was making.  It is as if they have vanished from his mind.  Turns out Connor may have a very serious speech disorder that would cause him to have difficulty learning to speak for many years.  If he does have Apraxia it would explain a lot and make us feel a lot better for him not learning to speak yet.  Sadly, Connor might be too young still to formally test him for Apraxia so, his therapist is going to do an informal test and see where he might be with out giving him a real diagnosis until he is able to meet the age criteria.
From what I have read, Apraxia is a neurological disorder where the brain is unable to send the message to the mouth.  It all makes sense for Con.  His brain is underdeveloped and his muscles (the tongue as well)  don't work as well as they should.  It is going to be on long, long road for speech.
So that was Mondays therapy.
Then we have Thursday...
Connor has PT/OT Thursdays and is there for quite awhile.  He loves everyone but has his moments like the rest of us.
I sit in the waiting room and wait for his therapist to come and get me after his sessions.  When we spoke on Thursday she mentioned to me that he was hitting quite a bit and pinching other therapists working in the room along with a little boy named Nathan.  When he did not want to play with a toy or finish a task (I believe it was stacking pegs) he began mouthing the pegs and/or toy and biting and hitting himself.  WHAT?  Where is this behavior coming from.
She mentioned to me that he might benefit from behavioral therapy or a behavioral interventionist.  I was appalled.  It made me feel like Eric and I are not doing our job as a parent teaching him right from wrong.  My stomach was in knots as I drove home looking at my sweet boy eating his lunch in the car.
Once home, I put the boy down for a nap and called his regional center coordinator.  She said they offer ABA therapy which is something that almost all parents of autistic children want for their kids.  Connor, although not autistic, might benefit largely from it.  From what she told me, they help with not only behavior issues but also implement all of the things he may be learning in therapy.
After lots of conversations with therapists, my husband, my mom and sister (both in special education), we have come to the conclusion that Connor's behavior is stemmed from his inability to communicate.  Makes so much sense now.
So, my mom is bringing home a special program to make a real communication board for Connor and we are now looking into taking American Sign Language classes for him.  Baby signs just are not cutting it as Connor is almost at age level receptively so he knows he wants to say more than one little sign.
Lets hope it all comes into play soon.
His speech therapist is taking tomorrow off to observed the holiday so we will have to wait until the following week to have a real talk about this.  I really need to get Connor on a program where he works on the same things over and over and not try to do new sounds each week.
ACK, this is a bit overwhelming for me as I sit here and write this.
The beauty of Connor though, he NEVER complains.

I wish I could get a lawyer...

So, I have been meaning to write this since Thursday but have not had time until now.

We had received the preliminary results of Connors MRI the day he had the test done. They read NEGATIVE for Leukodystrophy and his pediatrician said she should receive the final results no later than Monday. Monday came and went and I had received no call. Finally on Wed. I called and she told me to call the hospital to try and get things moving. She was sure it had to have been read by now.

I called the hospital and sure enough, they either had forgotten to send it or in one of their mass faxes to various offices, it might have gotten lost. She faxed it right away and the pediatricians office called me within minutes to let me know they had received it. OH YEAH!!! Sadly, our doctor had left for the day and would call me Thursday morning.

Bright and early Thursday morning I receive a call from Dr. A. She tells me the final results are in and Connor's brain is NORMAL! "WHAT? Are you sure? The CT scan showed missing white matter and patchiness". She proceeded to tell me that the CT scan is not accurate for that type of work and what they were really looking at on the CT was his skull to see the sutures and the extent of the closure. The pediatric neurological doctor must have seen shadows on the scan that represented this horrible fatal condition and had to warn us. Only the MRI showed the accurate analysis of his brain. There is NO disformation of any kind on his little brain.

So, I proceeded to ask her why the neurological doctor would even tell us something so serious if he knew only an MRI would be the true telling factor? She didn't know the answer to that one. She did tell me that they should have just told her that an MRI was needed for further studies instead of making us think the worse.

I am calling the hospital on Monday and asking for that doctors name. He should not be able to scare families like that.

So, now it looks like we are strictly dealing with a chromosomal issue. According to his pediatrician, as soon as we see the genetics doctor, we will discuss where to go from there. She will refer us to other doctors if needed. She told me that the genetics doctor will give us the complete down low of exactly how many genes he is missing and what that entails. She is also still concerned about his skull and is excited for us to get to meet the facial team in September.

Eric and my blood work will be back sometime this next week and we will finally see for sure if this chromosomal issue came from one of us or if is has started with C. If it did come from one of us its back to the drawing board to see why Connor is so special and unique!!

I wish I knew how to sue someone for false diagnosis. I guess I just better chalk this one up for experience.