When “I Just Don’t Want My Kid to be Labeled” Hurts – Part 2

So I banged out an article about my anger in record time, did almost no editing, and pressed the publish button (http://wp.me/p2OomI-13y). Then, I spent the next 3 days watching the hit number on my blog go through the roof and trying to address the many comments that came in on closed FB groups and on the blog post. The only point of my article was sometimes I feel jealous and resentful when I am around parents who have children with autism who have much more language and who are more functional in their day-to-day living skills than my child. And how the feelings are sometimes out of proportion, because they are rooted in grief and I have some work to do.  Some people could really relate to what I was saying and needed to hear that it was okay to feel these things. Others pointed out that there are other reasons not to want to label a child and they have it bad too even if their child is on the higher end. These points ran around in my mind for a while and I decided they were worth exploring further, maybe not so much for others but for me as I sort through the mess in my mind. So I am writing yet another post on grief when I would rather be writing one about the jack-o-lanterns we carved, but here it goes.

I agree I am too sensitive about the label thing, for the simple fact that nearly everywhere we go now it is pretty obvious my child has special needs and people often know she has autism. If they don’t, sometimes they ask “What does she have?” It wasn’t always this way. When she was small people just thought she was tired, shy, high-energy, or any number of things. So I am in the process of embracing my child’s uniqueness and truly accepting it. And the sad truth is that many people view autism negatively, instead of what it truly is. Autism is simply a description of a set of characteristics that attempts to describe my daughter’s neurology so that others who don’t have the same characteristics can understand her better. But the general public does not understand autism, or the wide range that is the spectrum, and they automatically think of all the countless negative stories about autism they have seen in the press. So the avoidance of the label bothers me, since it is so obvious in my daughter now there is no way for me to avoid a label. But in a way I understand people not wanting to use the label, because of the stigma of autism. Even I admit I usually describe her as “special needs” if I need to let strangers know about it and I don’t have time to clarify and let them ask questions (example: the pony ride situation…”My daughter has special needs, she needs support while she rides…”). But if I have time for discussion with the person, of course I use the term “autism” to describe her, because that is the best way to describe her. If I had a child that was on the border though, would I choose to use the label? Given the last post, the answer might surprise you: Probably not. Funny that if I were on that end of the spectrum I would be fighting for other people to accept the non-autism part more than the autism part of my child, but I guess that comes with the obviousness of my child’s autism symptoms. So if I analyze it a bit more, why did the moms mentioned in my previous post who didn’t want their children labeled bother me? Because one said it out loud and then said that her child would beat it. And the other celebrated in an obnoxious way when her child made it while I was standing right next to her and my child didn’t. From my perspective, it is not okay to ignore or downplay the struggles of others, especially those who have children with profound challenges and very uncertain futures. Again, it shouldn’t bother me as much as it did and I need to work on that, but it is still a valid feeling to have and parents like us could use more sensitivity.

As for my occasional (and now fleeting, since I have worked through a lot of grief issues) jealous or resentful feelings towards those on the very high functioning end, I feel it is a typical feeling for parents who have kids who struggle to request basic needs, feed themselves, dress themselves, find items in their home, and tell us when they are hurt. When I feel these negative feelings, they are rooted in grief and an intense fear for my child’s future. And if I stop and take a deep breath, and think of some of the severe challenges that high functioning people with autism have, I am able to temper those feelings. Thankfully, not only do I know several parents and their high-functioning children to give me perspective, but I have also read many books written by high-functioning adults who describe their childhood. One stands out…Stephen Shore wrote about how he slammed his head against the pavement due to a sensory issue as a child and that stuck with me. It just shows that the behaviors can be extreme anywhere on the spectrum and the parents are often at a loss to understand their children. Also, as I wrote in my previous piece, the struggles in school in typical classrooms are extremely painful, lonely, and demoralizing to these children. Having been a child who was bullied pretty mercilessly in 6th grade, I can relate to that, but that is a story for another time. Finally, although it is understandable for me to feel jealousy and resentment, it is also ridiculous at the same time, because some people have more children to deal with, their own illnesses, money issues, medical issues on top of the autism, etc.

The interesting thing is that I have been on the other side of the jealousy and resentment because my child was not as severe as another child. A great example is when we are at the pool, where my daughter appears neurotypical to most people, even the other special needs parents.  For example, last night I was at the pool watching my kid swimming all over the pool with my husband and in walks a dad with his teenage son with severe autism (the son is catching bits of light in the air with his hands, outwardly disconnected from people in his environment, has trouble coordinating his movements to walk and motor plan his way to the pool on his own). The dad is helping his son to the pool, he looks at me, I look at him, and we say hello. We have seen each other at the pool before, and I think I know what he is thinking about me…that I don’t understand what he is going through and I have nothing to complain about with my child. I can’t argue with him. You see, it is all about perspective and how we feel at a particular moment in time. All the negative feelings we have are valid. The trick is to somehow work through them and minimize the time spent stuck in them, no matter what the circumstances. Easier said than done sometimes.

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2 thoughts on “When “I Just Don’t Want My Kid to be Labeled” Hurts – Part 2

  1. judy says:

    I made sure to read both parts before commenting, and I just wish I could give you a huge hug!

    Not only are your feelings entirely valid, but how brave to share them so openly. You have every right to your feelings and I felt that you made clear that you own them and were portraying them as raw. Bravo to you! You felt it, you looked it strait in the eye and are choosing to press forward after all.

    I feel compelled to defend you a bit and to agree with your worries for those kids ( certainly not a majority) whose whole lives are being determined and shaped out of a parent’s fear, or worse by their parent’s pride. I have been asked more about how I feel about my kids labels than I have their actual challanges. And I always say the same thing you did here, basically that a label is not a closed door, but rather the key to opening it. how many more confident, productive, and highly intelligent individuals would be having a greater impact on society in general and their families most of all of they had been given a little more ( in some cases, a lot more) help along their way?

    I find myself regularly in the position of having to ” prove” that my kids are indeed autistic. They just don’t seem deficient enough to onlookers to make it believable when i lay bare their label. This can lead to some incredibly frustrating situations when trying to advocate or explain their tendencies or behaviors. I don’t say this to make you feel bad at all but rather to prove the value of your words and feelings. I am depending on their label to help us get the services that will continue to help my children succeed. I know several families who I’m positive have children on the spectrum, but just won’t get their children evaluated, in large part because they don’t want their child to be labeled, and that makes me so sad for these families, especially the kids.

    And Iwanted to say,I think you have a point about parents who can’t accept their child’s autism as not being able to accept your child’s. Yes, sometimes someone is just having a bad day/ week/ year, but, a lot of times, their denial is just plain hurtful to many.

    I’m sorry you’re wading through this horrible emotional sludge right now. Don’t forget though, you have every reason to be proud of the hard work that your family, esp. you and your daughter, have done to get where you and she are right now. And most of us feel jealous of something or someone at least part off the time. Rright now I’m very jealous of moms who can afford almost anything ( clothes, vacation) instead of ABA, or who are able to style their daughters hair, etc. It sounds so morbid, but this is really true : It can usually be worse…as you’ve already adressed.
    May today prove a little brighter than yesterday.

    • grahamta says:

      Thank you Judy. The funny thing is, after I wrote it all out, I feel much better. I guess it makes a great case that writing is great therapy. As long as we don’t hurt others. I think a couple people took the first post a little wrong, but then the second cleared it up I hope (and helped me sort through more feelings). So, note to self, sit on that publish button for a day.
      Regarding the public…funny, even my daughter can look typical at times even now. And people in the public can be so very judgmental. She will frequently bump into people by accident or “get in their way” (sometimes I feel as if they are in her way really) and they immediately get all huffy. I just ignore them and soldier on. They can deal. My kid needs outings in the community more than they need to hurry through the store 😉

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