Thursday, May 31, 2012

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.


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.


KC's Warrior Mama said...


My son goes to an ABA school. He was disgnosed and ABA was recommended, so we took the findings to the IEP meeting and asked that he be moved from the Early Childhood placement that he was currently in at the public school, and they said yes. Everything is paid through the school district, because they were not able to accomidate KC in his home district. (because they don't have the ABA) I am not sure how old he is, but maybe this is a possiblity for you?
Hope it helps.


The Scott Family said...

Thanks! We will definitely look into it!