Skip to main content

Autism Awareness Day: Some thoughts on acceptance

I need to preface this by saying that Raya does not have autism, and that my purpose is not to somehow cheapen or lessen the struggles that families of children with autism go through. Even though autism is not on Raya's diagnosis list, she does struggle with many of the issues that children with autism struggle with. Since today is about awareness and acceptance, I wanted to share some thoughts and feelings that I have had recently about acceptance of children with special needs of any kind.



A few weeks ago, one of the kids had a friend over to play after school. Something small but significant happened that day. It hurt my heart and I have been trying since then to sort out my feelings and put them into words, but I haven't been able to. Last week, another small but significant thing happened that put my world back into balance, and I think that today is the perfect day to talk about both experiences.

Our kids are blessed with great friends who live within walking distance of our house, so during the months of the year when the weather is pleasant, there is a constant flow of children in and out of our front door. This is a common occurrence at our house, and I love it. On this particular day, the kids had gotten out of school early and the weather was gorgeous, so it was a perfect day for playing with friends. The little girl that came over is as sweet and adorable as can be. She is always polite and well-mannered at our house and I enjoy having her here. While the kids were playing, I was in my office editing pictures from a photo session I had done that week. Since the office is next to the front door, I could hear everything the kids were saying as they went in and out. As I sat adjusting the photos I had taken, I overheard this small exchange between my daughter and her friend:

daughter: Should we go in the back yard?
friend: No, let's go in the front yard. But not with Raya. I don't like Raya. Do you like her?
daughter: {pause} No. 
friend: She's so loud and she never leaves us alone.
daughter: Yeah.

Cue the breaking of my heart. Let me be clear that I am not sharing this to in any way shame my daughter or her friend. While I don't like that they had this conversation, I do remember what it was like to be their age and I understand that they are just acting their age. They had this conversation out of earshot of Raya, and they didn't actually say or do anything mean directly to her. 

I sat there dumbfounded for a minute or two, not really sure what to do. It happened quickly, and they were off to find their next adventure before I had a chance to do anything anyway. Hearing the little girl say that she didn't like Raya was the first moment that I realized people might actually feel that way about her. I think every mother has those moments where she is made painfully aware of the fact that not everyone sees her child with the same unconditionally loving eyes that she does. Goodness knows I was aware of that well before Raya was even born. In that moment, my blinders came off and I realized that this is just the beginning. This was just one friend of one sibling. What about when kindergarten starts in the fall? (well, technically the middle of the blazing hot summer on July 27th) What are the other kids going to think when she has to leave class 3 or 4 times a day to go to the nurse's office? What if somebody notices her pull-ups? What if, heaven forbid, she has a poop accident in her pull-up and the other kids smell it and make fun of her? What if she feels left out when the other kids eat each other's birthday treats and she can't? What if her dysmotility flares up and she throws up in her classroom in front of everybody?

All of those are valid concerns, but as I've pondered it, I realized that what concerned me most was not what the other kids think of her or even what they say to her. She has a pretty good track record of not caring what other kids think or say. {Remember the time someone at preschool mentioned being able to see her pull-up and she told him, "Well, if you don't like it then don't look at it!"} The reality is that yes, somebody is bound to say something that will hurt her feelings. That's normal. It stinks, but it's part of life. What I realized was bothering me more than what other kids might think was this:  
What if she starts to notice the ways she is different from her friends and it makes her feel bad about herself?

That's an inevitable part of life, right? I get that, but I was hoping we would have more time. And maybe we do. Maybe kindergarten won't be the year that somebody makes fun of her for still wearing pull-ups, but maybe it will. And maybe it won't bother her, but maybe it will. Maybe her classmates won't make fun of her if she has a #2 accident in her pull-up and they can smell it (and believe me, they will smell it), but maybe they will. Maybe her classmates won't notice that she has to have an aide sit with her during lunch to make sure she eats & drinks without choking on her food, but maybe it will. Maybe her classmates won't mind that she sometimes forgets about personal space, but maybe they will. Maybe they won't Maybe they won't care that her tube sometimes leaks smelly stomach fluid on her clothes, but maybe they will. Maybe kindergarten will be the year when she gains better control over her bowels and bladder and starts making it to the bathroom on time, but maybe it won't. Maybe it won't be the year that her teacher finds it easier to ignore her than work through her difficulties to reach her. Maybe this won't be the year that the parents of her classmates get upset that they can't bring treats with peanuts or tree nuts to class because of her. Or request to have their child moved to a different classroom where there is no nut allergy. Maybe the other parents won't complain in front of their kids about having to accommodate another child's inconvenient food allergies, but maybe they will, and maybe the kids will tell her what their parents said about her. Maybe none of those things will happen this year, and if they do, maybe they won't affect her. But maybe it will, and I don't know if I'm ready for that.

Last week, we had another experience with another neighborhood friend that helped turn things around for me and restore my hope that school will be a socially positive experience for Raya. This time it was my son's friend that comes over after school fairly often. This particular friend is probably the one that Raya gets the most excited about. Whenever he comes over, she can't contain herself. She hugs him, talks to him, and follows him around. She adores him, and as he has spent time at our house, I have come to adore him too. He is so kind to her and so patient with her. If she bothers him, he doesn't let on. He and Cole never complain about her tagging along with them when they play in the landscaped area in front of our house. He doesn't act like he's annoyed by his friend's pesky little sister, but rather seems to enjoy having her around. When he knocked on the door, Cole was in the middle of folding a load of laundry. I told him he could go play but that he had to finish folding and putting away the load of laundry first. I invited his friend to come in and wait for him to finish. Cole didn't want his friend to be bored so he let him sit on the couch and play on his Kindle Fire until he was done with the laundry.

It was no surprise to me that when she heard someone say his name, she came running to see where he was. She climbed up on the couch next to him and watched over his shoulder as he played games on the Kindle. I cringed a little when she completely invaded his personal space by snuggling up next to him and putting her head on his shoulder so that the side of her head was touching the side of his head. Bless his heart, he didn't say a word. He didn't move away from her. He just sat there and let her snuggle up to him, almost like he didn't even notice. Since it didn't seem to be bothering him, I didn't say anything. About 5 minutes later, I was in the next room and overheard him politely say, "Raya, can you move a little bit please? Your head is sweaty and it's making mine sweaty." She giggled and moved, and that was the end of it.

I just wanted to hug the kid. While I love Raya dearly the way she is, I also acknowledge that she can be really intense and kind of a lot to handle, and I don't think this little boy will ever know how much it means to me to see him being so nice to her all the time. That got me thinking about all of the other friends in our lives who have been so loving and accepting of Raya and her differences. The older kids who think her backpack is cute, and the kids in her class at school who are jealous that she can "eat through a straw in her stomach" instead of having to eat food. The kids who aren't grossed out when the tube accidentally gets pulled out at the park and watch in fascination as we put it back in. They don't try to ditch her when they're playing because they think she's too loud or weird or annoying. They play with her because they like to play with her, not because they pity her. They are the ones that look at her and just see their friend Raya. They accept her as she is and build their friendships around the ways that their unique personalities intertwine. I hope that kindergarten will be a year filled with those kinds of experiences.

As one of the most influential adults in her life, I have come to understand that my responsibility to her is to use the tools I've been given to help her overcome the challenges she has to the best of her ability and then to accept her for who she is, not try to change her into who I want her to be, no matter how good the intentions. I hope that all of the influential adults in her life will come to understand this. As she moves forward into kindergarten, my deepest hope and prayer for her aside from her safety while she is at school is for her to be accepted by her peers and by the adults in her life, and loved for who she is.

Comments

  1. Very important post! And it applies to so many different situations. I know a boy with autism who is the brother of a girl at work. I work in a video store, so sometimes she will bring her brother in to pick a movie when she's not working. He is quite loud and likes to ask a lot of questions, and sometimes customers in the store stare at him, but all of us who work there think he's very sweet, and it's clear that his sister absolutely adores him. As I said, this is such an important post, and it sounds like your kids have some very sweet friends :)

    ReplyDelete
  2. This comment has been removed by the author.

    ReplyDelete
  3. Sorry, I deleted my comment because, for some reason, only half posted. It made me sound so rude because the first half was gone.

    ReplyDelete

Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …