The Scarlett Letter

This "A" represents a different meaning than Nathaniel Hawthorne intended, but still has its own share of stigmas and life-changing effects.

Autism.



Deacon has autism.



Even though I first suspected he might before his first birthday and have had doctors on the fence since then, it still felt like a huge blow after all the progress he has made and hope that we have held onto. Brian was especially taken back by the news.

Now looking at the signs and symptoms, how could he not? Below are many characteristics for autism. The ones highlighted in yellow are parts of his personality now, the blue are some he has had in the past, but is beginning to overcome.

We spent 4 hours at his appointment at the Autism Center. They asked us a million questions and observed Deacon. The doctor immediately picked up on things we haven't paid much attention to, like how he flaps his hands when he gets excited.

They took Deacon and I into a room with toys scattered on the floor. His doctor said each toy had been specifically chosen to see how he would interact with it. I was not allowed to talk/play with Deacon unless asked to do so, so I just sat and observed. First he was overwhelmed by the clutter in the small room, and began pacing circles around the room whining. The doctor asked what was wrong and I explained that because of vision issues he was probably nervous he would trip on the toys. The doctor tried engaging him with many of the toys, and even ones I would have thought he would be interested in, he paid no attention to. It was eye-opening to see him in a different environment where I couldn't interact with him. I know he does better with me at home, but didn't realize how bad it was outside of our environment. I held back tears. She tried to get him to play pretend by bathing a baby doll. Deacon ignored her most of the time, and at the very end, took the doll and chewed on its hand. She poured crackers and fruit snacks onto a plate for "snack time." He flipped the food off the plate and put the plate in his mouth.

Before they even gave us the diagnosis, I knew.

We are fortunate that he is not aggressive, is easy-going, and enjoys being around others. The doctors say this will help therapists/teachers work with him because he is so easy to love.

We haven't been told the severity of his autism (ie. what end of the spectrum), but will hopefully learn more at an upcoming appointment. The doctor told us it is great that we caught it so early, when therapy is the most beneficial. Most studies have been done on the benefit of therapy for children age 3+, so he is ahead of the curve. Dr. Voight thinks it's possible that with ABA therapy, Deacon could one day lose the autism diagnosis.

So what now?

ABA therapy is our only hope at making big changes. Unfortunately, it is VERY expensive. Like $50/hr. expensive. And the doctor suggested AT LEAST 20 hrs/week to be effective. Because we both work, we make too much money to receive help from the government. (We are on the waiting list for the only assistance he could receive. The wait is 8-10 YEARS.) The boys are on Brian's insurance, and I just found out that his insurance doesn't cover it. Luckily, because we just had Bennett, I am able to add the boys b/c of the life-changing event. It appears my insurance does cover it, but how much, I'm not sure. It could only be a couple of hours a week, or have a cap on how much they are willing to pay. Even 20% of $1000/week is going to bankrupt us, especially now that we will be spending $300/week to have two kids in childcare.

It looks like we may have to do some fundraising to get help for our most prized possession. I will do whatever it takes to give him every resource available. I just hate that Brian and I both work hard and pay taxes, but aren't eligible for any benefits our government provides because we make too much, but not enough to cover costs.

2 steps forward...

1 step back.

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.

ECI Interview

Today Deacon had his appointment with Early Childhood Intervention. An Occupational Therapist and Early Intervention Specialist came to our house to observe and interact with Deacon, and asked lots of milestone questions for their evaluation to see if he qualified for services.

Both girls were really nice and very thorough in answering questions. They used huge timelines with milestones listed on them, and highlighted the areas where he is successful. His gross motor skills are even above where they should be, but like we suspected, the fine motor skills (manipulating items with his hands), language, and socialization showed some deficits. He does qualify for services and starting next week will receive an hour of Occupational Therapy and an hour of Developmental Therapy per week at his daycare at no cost to us. They will send a report home following each visit with suggestions of activities to do at home and will also train his daycare teachers with the same activities while he is at school.

They left with a list of suggestions for us to start incorporating immediately, and I am excited to start helping him! I feel a little better knowing that we have a plan of action and support while we wait for answers from doctors.