This is a post by my wife, Kristin Berry. She has worked as an in-home daycare provider, special education assistant, children’s minister, and most importantly, a homemaker. She is the reason our family functions at a high-capacity. She is an expert in parenting children with special needs. You can connect with her on Facebook
Honesty is of utmost importance in our family. We try to teach this character trait to our children each day. We value honesty and try always to lead by example. This is why my own act of dishonesty has been plaguing me. I am confessing this now.
Photo courtesy of istockphoto.com
It all started on a seemingly simple trip to exchange a t-shirt. I had made my schedule carefully, as I do each day. I made sure my pre-school son was well fed and comfortably dressed. I ran over the schedule with my 4 year old multiple times during breakfast.
- Hike in the park – the one with the bridge
- Clothing Store – the one near the really big Christmas tree
- Library – the one with the miniature house on display.
- Lunch – peanut butter and honey with yogurt and a banana.
We reviewed the schedule as I zipped coats and tied shoes.
We discussed the schedule as we buckled in the car.
We painstakingly picked apart the schedule as we drove to the park.
We double checked each detail of the schedule as we enjoyed tossing rocks off the bridge at the park.
As you may have noticed, my 4 year old has deep need to know what is happening and when. He has a desire to plan, prepare for and complete each task during the day. This behavior can seem strange and frustrating. One of the reasons he does this is because he has ARND (Alcohol Related Neurodevelopmental Disorder). Simply put, his brain was damaged before birth by exposure to alcohol. His ridged need for a schedule can be frustrating but his lack of distress tolerance can be downright embarrassing.
If his agenda has a hiccup, it is very difficult for him to turn his brain in a different direction. He has an especially difficult time managing frustration in public. Often I find myself wishing others would understand his diagnosis. I wish to educate pregnant mothers on the dangers of even a little alcohol. At the very least I wish for a post-it note on his forehead that says, “I’m not a brat, it just takes my brain a little longer to process than yours.”
This is where my honest nature gets tested. I want others to understand this about him. I want others to have compassion for him but I also understand that a Fetal Alcohol diagnosis carries a stigma. He wasn’t born with this disorder by accident, this was done to him. I believe that his birth mother loved him, but she did not have the self control to stop. If others know about her choices they may judge her or even my son.
So, as we entered the clothing store, the schedule went awry. The manager looked him in the eye and said hello. He melted down and hid behind a display at the front of the store. The incredibly kind manager offered him a balloon. He began to growl at her and cry. She patiently sat the balloon on the counter and attended to my exchange. I was relieved by her kindness, but embarrassed by my son’s behavior. It took him the next 10 minutes to calm down. During that time I felt I owed the manager an explanation.
I told her a lie. I explained the he has autism and that these type of situations can be difficult for him. She nodded sympathetically and smiled with understanding. Once the melt down was over, he cautiously accepted the balloon and quietly thanked the manager. She wished us a good day and we left the store hand in hand discussing the rest of the day’s schedule.
I know it was wrong to lie. I know I missed an opportunity to educate others. So why did I do it?
I feel that if my child had a diagnosis like autism, he would be met with more compassion and understanding. I fear the judgment of others toward me, my son, and his birth mom. I am frustrated by the lack of resources and education regarding ARND. I guard all of my child’s private information and don’t want his diagnosis to change how others view him.
I feel guilty about my lack of honesty. In light of this, I will make a new commitment. I will always be cautious about my son’s private information. I will not share details that will embarrass him. I also will not lie about it again. Lying implies shame and I have no shame for my son and neither should he. He and I did not damage his brain, but he and I will work together until he overcomes this disorder.
I have to go now. It’s time to make a peanut butter and honey sandwich with a side of yogurt and a banana!