Well, more like a giant leap back.
Today was Deacon's check-up with his neurologist. Dr. Foster is the 5th neurologist we have had experience with, the first who wasn't connected to Texas Children's Hospital, and the only one we have loved. He shows a real interest in Deacon and strives to find a cause, even when the seizures seem to have disappeared with medication. The doctor said he has thought about Deacon since his last appointment because his case is so perplexing. He still doesn't fit into any cookie cutter epilepsy diagnosis, so we are going to do a few more genetics tests.
Dr. Foster asked lots of questions about development and was most concerned with Deacon's speech. I told him we had been waiting for his hearing test, and when that was completed we hadn't heard anything about the Speech Evaluation from ECI. He suggested Deacon be evaluated and start receiving services.
He asked if Deacon had been diagnosed with autism before. I told him about our first visit to his pediatrician when this all began and our original concern for autism, but with the epilepsy and vision issues, they seemed like a likely explanation for the autism symptoms. He said that with Deacon's limited vocabulary, verbal, and non-verbal language; lack of initiated interaction and imaginative play; and some repetitive behavior leads him to believe Deacon has AUTISM.
Ugh.
It seems like the visits that the initial bad news has been given are the times that I tell Brian not to bother taking off work, and I take Deacon alone.
The wind was knocked out of me.
Dr. Foster thinks the autism is caused by the epilepsy, so there is hope that his improvement will exceed that of a typical child with autism who has no other symptoms or cause, and by the time he is 8 or so he may not have any issues. He was impressed with Deacon's eye contact, smiling, and improvement since the seizures stopped.
When I called Deacon's ECI Case Manager after his appointment, she was surprised by the news, especially with all of the vision issues, so I am eager to hear from his Vision Specialist and Neuro-Opthamologist as to their opinions. We are also about 6 months in on the one year waiting list for Meyer Center for Developmental Pediatrics where Developmental Specialists will weigh in.
The news sucks, but my faith couldn't be stronger. The first thing I did when we got in the car was open up the Bible App on my phone, to the verses that have reminded me of God's promise:
My friends, be glad, even if you have a lot of trouble. You know that you learn to endure by having your faith tested. But you must learn to endure everything, so that you will be completely mature and not lacking in anything...God will bless you, if you don't give up when your faith is being tested. He will reward you with a glorious life, just as he rewards everyone who loves him.
James 1: 2-4;12
God has gotten us this far and I have no doubt that Deacon is exactly as he should be. I also know that Deacon has conquered all other labels assigned to him and continues to amaze us every day with his improvement.
Please continue to pray.
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