Why did I wake up this morning thinking about a party that my family and I attended several weeks ago?
Something happened there—not something big—that I hadn’t given much thought about since Lamar and I processed it in the car later that day.
Let me paint the picture for you—nice day, family-styled gathering with lots of food and activities for the kids to enjoy. Lamar hung out with Jessa and I spent the bulk of the day with Juliana.
That was the plan for the outing. Juliana did moderately well that day. I had to keep her isolated a bit so she wouldn’t fuss about eating or grab food from people constantly eating all around us. Angels like eating, so food events are challenging.
I didn’t realize that less than six feet away from me, a conversation was ensuing about exactly what Juliana’s disability was. Really? Why? In my head I just wonder why it was important to know this.
So, here’s what happened. Lamar was passing a small group of ladies sitting near me and overheard someone ask if anyone knew what was wrong with Juliana.
Several from the group chimed in their assessment. Then, the Guru, I’ll call her, announces “I’ve been watching her movements and the way she acts. I’m pretty sure she’s Autistic.” Hmmmm. Interesting.
There is no easy way to approach a special needs parent about their child’s diagnosis and I’m not sure that it’s necessary when the person is a complete stranger.
There is no easy way to approach a special needs parent about their child’s diagnosis and I’m not sure that it’s necessary when the person is a complete stranger.
I’m so glad I started this blog. Because comments like that let me know that I have so much I want and need to say.
That there is so much we need to learn; that we need filters in many instances and in many ways we don’t know it. If you’re a special needs parent, you already know where I’m going.
If you’re not, this is what insight I want to offer. Special needs parents don’t need side conversations–we need support.
I sat in that spot with Juliana for a while and I could feel the stares when she started a fuss. Did anyone come over to offer a hand or say hello? Nope. Lamar came over to relieve me so I could eat and take a break.
I guess there was nothing else going on for them at the party so Juliana became a good topic to discuss.
But how much more effective the time could have been spent asking to meet Juliana, saying hello to me, or asking if I needed any help at all.
Now, please know that I’m not angry about this or using this woman as an example to lash out against. Sadly, she is more of the norm that I experience.
As a special needs parent you learn to grow a thick skin. There is no easy way to approach a special needs parent about their child’s diagnosis and I’m not sure that it’s necessary when the person is a complete stranger.
In the time that Juliana’s disability has become obvious, I’ve had more than a few not-so-appropriate “What is her diagnosis?” questions from strangers. The kindest has been from a lady that we see each week at church, but don’t really know.
She always talks to Juliana and makes encouraging statements about her walking. One day she said “If you don’t mind. May I ask what’s her diagnosis?”
Hey now! I like that! Of course I didn’t mind. It was gracious and thoughtful. She didn’t blurt out “What’s wrong with her?” or “Can she talk?” which was a recent question that Lamar got. Interestingly enough, the woman and I got into a conversation and she told me that Juliana reminded her of her cousin who has Cerebal Palsy.
You may not know a special needs parent or child right now.
But someday you will and you’ll get to make a choice to support them or add to the already interesting looks or side comments that come our way.
When it’s your time, will you be the Guru or the Church Lady?
I usually ask out of pure curiosity. As an autistic person, I am curious if I see things like that. It takes one to know one.
Hello Anna,
What you said makes sense. The lady at church was curious because she recognized some similar characteristics of her niece. We are all naturally curious when we see something different. But it doesn’t make sense to me when someone chooses to make my daughter the topic of their conversation without even saying hello or trying to see who she is beyond her disability. What is it like when people approach you about your disability?
I am open to curiosity, but not ignorance or rudeness. If it is a legitimate question, I give them the best answer I can. If it is a rude remark, I ignore it. People do not notice most of the time unless I go to the resource room for a test. The worst is when they say I’m too intelligent to be autistic. When they ask that, I think “What part of spectrum disorder don’t you understand?”
I like what you said about being open to everything but ignorance or rudeness. I guess I get more ignorance and people are just unaware when they are being offensive. Like you, I do my best to ignore it. And no, people don’t understand, so we have to keep having open dialogue like this.
I’m so glad you stopped by and hope you’ll contribute again.
People can really be rude. This is a good reminder for everyone to be gracious and sensitive to children with special needs and their parents. I hope you encounter more like the church lady and not as many Gurus…..
Love this. Sabrina- you write so eloquently.
Thank you so much. It seems that I go through a thousand revisions before I feel it’s good enough to publish. You just made my day!