I have another post coming soon about how Alvin is recovering from surgery but first I need to address something.
I've had many people ask me if Alvin ever had autism at all after finding out about the underlying condition of hydrocephalus? After having the surgery could/will he become normal? As in will he gain all of the motor control and speech of a normal 5 year old?
The answer is in a word, no.
Yes some of the things that can signal hydrocephalus are also signs of autism. The most noted ones are speech delay, fine motor skills delay and gross motor skills delay. The symptoms of autism are much more involved and include social challenges, repetitive behavior, sleep dysfunction and sensory processing problems to go along with the motor skill and speech delays. All of these things Alvin has and has had since the evaluation process began almost 2 years ago.
The hard truth is that if left undiagnosed and untreated the hydrocephalus could have killed him. We wonder that would we have found out soon enough had we stayed in AL and gone with the doctors and nurses recommendations. When would we have even found out and how much damage would have been done?
The surgery he had last week saved his life. End of story.
The fact that W and I knew something wasn’t right and asked for another neurological evaluation at Seattle Children’s to be sure that the seizures were diagnosed correctly was the first step. Seizures are common in kids with autism so we had every right to be sure we had to correct diagnosis and were handling them appropriately.
The staff at Seattle Children’s Hospital is to be commended though. The recommended the MRI in addition to the EEG to be sure there wasn’t something else going on. When the neurologist saw the results he did what he thought was best and sent us to a neurosurgeon for a better evaluation. The neurosurgery team acted fast in getting him an appointment as soon as possible as well as the treatment and surgery to avoid damage being caused to his brain or optic nerves.
The question is now that the pressure has been taken off of his brain what will happen now? At this point we just don't know. He could gain some motor and speech skills over the next few months and year but we have no idea. He will also continue his course of music therapy, special education preschool and mainstream gymnastics classes. So whatever improvements we may see cannot just be attributed to the surgery.
Do W and I hope the end result of the surgery helps in some in other areas of his life, of course we do. But the fact that we still have Butters here today and we have warded off a potentially deadly condition means more than any improvements that may come from the surgery. We can and will deal with the challenges. We are just glad he is still here.