The Monster in the Room

A local mom of a special needs child shares her experiences at the North Carolina State Fair
Thumbnail Img 4070
Photos courtesy of Maxie McGlohon

It was a gorgeous fall day, the world exploding with the vibrant colors of a North Carolina autumn. Per tradition, we headed to the North Carolina State Fair. No easy task when you have a child with special needs. This annual journey shows our son David new and exciting things. He has autism and a rare syndrome called Bardet-Biedl Syndrome (BBS), which typically causes blindness beginning in the teens.

Just getting to the gate can be an accomplishment. We load a backpack full of clothes and healthy snacks, hoping to counter balance all of the forbidden sugary carb laden foods that we were about to devour. Next the hand sanitizer, as sickness with David often means hospital stays or several rounds of antibiotics. Then the detailed conversation about keeping a close watch on David. It’s exhausting just getting in the front gate!

Skipping with glee as he heard the joyful screams and laughter from all of the colorful rides, David’s eyes lit up like Christmas trees as he saw brilliant lights of the Midway. His senses awakened as he smelled those candy apples and cotton candy. As soon as he spied the giant Ferris wheel, he said, “Ride rides!”

The main ride that David likes is the “Monster Truck.” We usually ride with him. We explained our situation to the female ride operator. We saw several adults riding with their children. David held the windshield with the death grip, laughing and smiling the whole time, while this proud mama was waving, snapping pictures and video to archive the special moment.

Next we saw animals, record-breaking watermelons and pumpkins, and gorged on more deep-fried Oreos. Then we toured the Kerr Scott and flea market buildings, getting our sample of House-Autry hush puppies and a muscadine slushy. We took time to meet with law enforcement officers. We never turn down opportunities to share David’s story and raise awareness about autism and BBS with anyone, especially law enforcement. It’s so important for them to be exposed to and learn more about autism and rare syndromes.

Again my son looked at us and said, “Ride trucks!” If you are a parent of a child who is mostly nonverbal and he says, “Ride trucks,” then you are undoubtedly going to ride trucks! A male attendant said adults could not ride and my son was too tall. A meltdown approaching, I pointed out the other parents on the ride and if adults could ride, my son wasn’t too tall. I stood my ground and the attendant finally conceded. We let him ride alone and he did great! Through the joy I felt defeated.

Debating our departure, we asked David what he wanted to do and again, “Ride trucks!” The mama bear roared, as we had experienced a form of discrimination against those with disabilities. I just kept asking, “Why does everything have to be so damn difficult?! I shouldn’t have to waste 5 minutes having to explain anything about my son, who simply wants to enjoy the fair like any other.

We walked to the administration building and met with two upper fair officials. They interacted with David and took time to get to know our family. They walked with us back to the ride and explained that if adults could ride with no safety issues then so could a child, assuring me they would talk with all ride attendants.

I noticed a mother smiling at me with the “I understand what you are dealing with and I get it” smile. Concerned that she couldn’t ride with her son who was visually impaired, we offered assurance. I wept tears of joy as I watched these precious boys smile and laugh with every revolution of the ride. Plus knowing that we helped other families with disabled children, just by taking a moment to raise awareness and acceptance. The moral of my story here is that the “Monster” in the room may not always be visible. It’s not always the scary monster waiting to jump out and grab you. It can be the monster of discrimination or lack of understanding and acceptance of those that are different.

 

​Maxie McGlohon, MSN, RN, FNP, LNC, blogs on Facebook about her son's autism and living with BBS. You can also follow her on Instagram. For more information, visit her website, Hanging 11 with David.

 
Categories: Food + Fun, Guest Bloggers, Solutions, Special Needs, Teens

Comments

comments