TV watchers perk up their ears, more interested now.
“You are a very special kid.”
The child feels loved and encouraged by this singular description.
Special: better, greater, different from what is usual. Exceptional, uncommon, remarkable. Noteworthy, outstanding, unique. Distinctive, individual, specific. These words connote good, happy feelings. Something that is special is something to be excited about and praised. But pair the word with “needs” and it all changes.
“This is my daughter. She has special needs.”
That is met with a concerned look, even sadness or pity. A kind nod, and a remark such as, “I’m so sorry. She is really beautiful.”
Wait, I thought special meant better, greater and exceptional? Outstanding, unique — remember? Why would you feel sorry for my child who is special? You just told that other kid he was special, and he beamed proudly. How did “special needs” become such a downer?
I would have felt the same as this parent before I became a “special-needs parent.” Do you know why? Because I was sad, worried and sorry when I started out. Those were the first emotions I battled after the diagnosis of each of my children — all of whom have very different challenges. But that sadness doesn’t linger. It gives way to understanding, hope, action and even joy.
If I’m not afraid to tell you my child has special needs, it means I’ve accepted this fact, and have no shame in it. I’m telling you because you seemed curious, and I thought you’d like to know more. I didn’t tell you for pity or sorrow; I told you to help educate you about what we face daily — to raise awareness. So when you hear me say those two little words, know that I feel privileged to raise a child with such diverse needs because it means I get to develop more compassion, tolerance and acceptance. But I didn’t reach acceptance overnight.
Lately, we have been talking a lot about autism in our family. My daughter is 12 and on the spectrum, and her younger brother is starting to ask questions about why his sister is different. The only way I can think to explain it to him is to describe what autism is for her, because autism varies for every child. The more discussions we have, the more understanding he has. But also, I think my son has a hard time accepting it, just like I did when she was diagnosed more than eight years ago.
One day, my son asked why his sister doesn’t like to sleep on her bed. This has been an ongoing issue in our house, and we have tried everything. We have decided to let her sleep on the floor at the top of the stairs, because that’s what makes her happy. So her bed and cutely decorated room remain a lonely corner of the house for now.
In response to his question, I said, “It must be related to her autism, because I can’t figure out why she won’t sleep in her bed.” My son nodded and seemed to understand.
My daughter overheard this comment and got upset and said, “Don’t say that. Don’t say that I have autism.” She didn’t like that I used autism as a reason for her sleeping preferences. I was surprised by her reaction, and wondered how she feels about autism. We have talked about it, and when we are out in public, if she sees a child acting a certain way, she will ask me, “Mommy, does that kid have autism?” She’s starting to understand, but maybe this understanding is affecting how she views herself. Right now, she doesn’t feel proud to have autism. She doesn’t want to feel different, or be treated differently. But how do I help her understand how special she is when she is having trouble understanding what autism means for her?
Since she was very young, she has loved books. We have also spent many hours creating little books out of construction paper. I would draw her favorite characters and we would make up little stories. Often, I would use these books to help her achieve certain life skills — “social stories” is the common term.
Soon after her negative reaction to my autism reference, she wanted to make a comic book. So I divided the lines of the blank pages into sections, and as she lay in her preferred bedtime spot at the top of the stairs, we created a story together. I drew in one section, she responded in the next. It went back and forth until the page was full. It occurred to me that I could use this to my advantage. So I started a new comic one night. And through stick figures and bubble dialogue, I was able to catch a glimpse of how she felt. Here’s what we created in this comic, shared with her permission:
Me: How do you feel when people talk about autism?
Her: I don’t like it when people talk about it.
Me: Why don’t you like it? Tell me more.
Her: Because autism feels kind of nervous to me.
Me: Because you don’t want someone to say you have something? You want to be normal?
Her: I don’t feel normal.
Me: Why don’t you feel normal? Why can’t I say you have autism?
Her: Because autism makes me nervous.
Me: But if you have autism, why does it make you nervous? Do you mean it makes you feel scared?
Her: Yes, it does make me feel scared.
Me: Scared because people might think you are different?
Her: Why does it make me feel different?
Me: Because not everyone has autism, so you are different. Do you feel different?
Her: Yes, I do feel different.
Me: What do you think makes you different from other kids?
Her: I feel different when I’m lonely.
My daughter is who she is, and that’s all she knows. She’s trying to figure out how autism fits into that equation, and what it means for her. Yes, she has special needs, but to me, she’s just special because she is mine.
Let’s change our reaction to the term “special needs.” It’s simply a way to explain that a child has extraordinary needs. Yes, sharing a diagnosis is sometimes necessary, but don’t let that eliminate the extraordinary that exists in every child. Last I heard, being extraordinary wasn’t a bad thing — it was an amazing thing. Let’s celebrate the amazing that exists in every individual.
I call my kids special, and I mean it. They are special, unique, outstanding, exceptional, noteworthy, uncommon, distinctive.
Let’s make our kids feel special, no matter what their needs. And maybe this will help my daughter see that her autism is what makes her special. Don’t we all have something that sets us apart? Let’s end the pity parties for special-needs children and their parents, and have a real party to celebrate the differences that make our world a better — dare I say “special” — place.
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