Tears, Tiaras, & Mammoth Dog Paws

“STOP IT! STOP TOUCHING ME!! LET ME GO! JUST LET ME GO LIVE IN THE WILD!”

“I’m never going to stop. I’m never going to let you go.”

The sound of screaming drifts past as I am walking the dog. He’s a Great Pyrenees named Hercules and we chose to make him a part of our family for this reason. I replay in my mind the decision we made that led to this moment. Our ten year old daughter has been in her school pageant every year.  This year our five year old daughter with Autism Spectrum Disorder wanted to be in the pageant. My husband and I discussed it at length. All questions, no answers.

“What if she has a meltdown?”

“What if we spend this money and then she can’t handle it?”

“Is there anything we can do to assure it goes as smoothly as possible?”

“Should we tell the people in charge of the pageant that she has autism?”

We eventually decided we would just go for it. Sadie wants to do it. Let her go out there and do what Sadie does. We would have faith in God and how He made Sadiebug. We wouldn’t tell anyone who doesn’t already know. We just want her to be her. No labels, no limitations. Beauty pageants don’t matter to us. There is no judge in the world that is more of an expert on how beautiful our children are than my husband, myself, and God. Girls just like make-up, puffy dresses, and curly hair. All Sadie wanted was a trophy. She did specify, “I kinda want a big one.” More than likely she wanted one of her own because her big sister has several. Sadie looks up to her sister and wants to be just like her. Sadie just wants her own trophy.

In many ways Sadie’s autism worked in her favor. She had a pretty dress, make-up, and her hair was curled. She also finally had the opportunity to wear the black high heels we never let her wear. In Sadie’s mind there was just no question as to how she looked. Having done this many years with our older daughter I know the questions that go through their minds, “Does she have a better dress? What if the judges like her hair more? What if I trip?” None of that entered Sadie’s mind. She only saw herself from her perspective and from her perspective she was a princess.

When she made a mistake on stage and went the wrong way the autism also helped. With our older daughter when she went the wrong way once you could see on her face she was embarrassed and lost all confidence. Not for Sadie. She looked at the X’s placed on the stage to direct the contestants, assessed where she was supposed to be, and went there. No embarrassment, no drop in confidence, just “X” marks the stop.

In a darkened auditorium I sat with her father, her twin brother, her baby brother, and most of the town watching as trophies were handed out. I watched my 38 pound child’s fists clench more with each trophy handed to each beautiful little girl. I silently prayed she could hold it together to realize what everyone in the auditorium, but her, already knew. She was the only child without a trophy because she was about to be crowned queen.

It’s 10:30 at night now. She’s had a day full of sensory overload. I dreaded this. As the puppy finishes his business I stand on the porch in the cool, crisp Alabama spring air and look down at Hercules, who is now whining by my feet. He’s only a puppy. He hasn’t had training yet to help Sadie with her meltdowns. With a sigh I decide to do what we did with Sadie and give him a chance to shine. We go in the door and the scene is more horrific than usual. She is trying to hit and bite her dad. She is contorting into positions you only see in movies about the paranormal.

“STOP IT! STOP TOUCHING ME!! LET ME GO! JUST LET ME GO LIVE IN THE WILD!” Sadie screams at her dad who is trying to stop her from hurting herself while also gently applying some pressure to her small body, which helps with sensory overload.

“I’m never going to stop. I’m never going to let you go.” He replies sadly.

“Come on Hercules.” I whisper as he moves with instinct and hops onto her bed. She begins to try to hit Hercules and then looks at him while he puts his mammoth paw across her small belly.  She slowly begins to calm down and quickly she asks for an ice pack for her head that is hurting. She strokes Hercules’ downy, white fur and stares into his big brown eyes. Something passes between the two, a little girl with tears, a tiara, and autism and a gigantic puppy with a patience well beyond his 4 months of life. The crisis is over for the moment.

I sit down and my husband, Sadie’s daddy, is doing his best to try to hold back tears. “It’s just so unfair. It’s such a big accomplishment for her and she can’t even enjoy it.” Sadie’s pain hurts deep inside me and my husband’s pain does almost more. I remember on Valentine’s day how deflated I felt when we took the kids to do fun, free stuff they each would enjoy and it ended with Sadie having a meltdown and having to be carried off the downtown streets amidst all the onlookers. Her kindergarten teacher later told me that the next day Sadie told all her classmates about her exciting day. I said to my husband, “She will.”

I truly believe as a parent of a child with autism, or even without autism, you want to stop the pain. Avoid the meltdowns. Meltdowns are one of the ways children with autism cope with sensory overload. We might be able to decrease the meltdowns, but in doing so we limit their exposure to the world. We limit the opportunities for them to learn to cope. We limit their chance to shine.

I was ecstatic when Sadie got that crown, not because I needed a judge to tell me she was beautiful. If you think she’s pretty in a dress you should see how pretty she is when she, her twin brother, and Hercules are all covered in mud. Or how gorgeous she is holding a frog that slowly, methodically tinkles down your leg. No, I was ecstatic because Sadie’s autism helped her achieve her goal. Sadie used her different abilities to achieve her 5 year old dreams, “Mamma, I want a trophy. Maybe a big one.” Tears, tiaras, autism, and mammoth, white dog paws. They all shine if we let them.

Jesus Came to Our House

Mainly illness kept us from doing anything this Easter, the baby is still sick, not to mention the rest of us. I look at Facebook and see family pictures of everyone at church and family functions. Everyone looks beautiful by the way. Families want you to come over, friends invite your family out, but few will know and understand that with Autism the routine of the day is shot first thing in the morning. Chocolate and toys are not the usual routine of the day.

 

The biggest church days are Easter and Christmas. Not coincidentally the worst days to take an ASD child to church. As an ASD parent you want to phone family and churches and ask what days will there be the lowest attendance? Summer beach weeks maybe? Luckily, even on Easter, God is not just found in the church. He always is invited in our home.

 

Actually He lives here and He understands that with the life He gave us there won’t be cute outfits. They are likely to be itchy, or the sandal straps feel weird so socks are required. He understands the packed homes and churches with all the beautiful colors, sounds, smells of freshly showered people and freshly cut flowers is overwhelming to the sensory processing system.

 

So today, and every day, thank You God for coming to the sometimes shut-in ASD family that we are so grateful You created. It’s so comforting to know if we can’t be in Your house, You will always be in ours.

 

Handled Like a Boss