The Stress of Sharing

3 Feb

Recently I was talking with the mother of another child with autism. She was telling me a very detailed and very specific story about her child. This was out of the ordinary for this particular mother so my spidey-senses started tingling. At the end of the story, she asked me if I had experienced anything similar (I am purposefully leaving out detail because I do not want to disclose any identifying factors). I hadn’t, thankfully, so I said, “nah,” and I changed the subject. But something made me VERY nervous about the situation and I was very glad I could not contribute anything to the conversation.

I am finding that more and more often, other parents, friends and even sometimes family members are more pumping for information vs just simply sharing it. And once the info is out there, it’s fair game to be used anyway they see fit.

In my area right now there is a hot-bed of controversy in the special education world. Again, so as not to draw myself personally into the debate, I won’t disclose the nature of the controversy except to say it is on fire. I have had SEVERAL parents, some I know and others I do not ask me for opinions on things. When I choose to say anything at all, I leave my daughter completely out of it and I can out-politician a politician with my answer. My silence or my answer seems to infuriate people, so they leave me along about it. I am not going to make my child a poster-child. I am not going to drag her on the Today show. While awareness is great, I am going to do what I do in these kind of hot-button issues anonymously. It is just entirely too difficult to add this kind of stress to an already stressed out life. Not to  mention, putting my child front and center means she is a target. So, thanks, but no thanks.

On top of all of the drama of that, I have found that there are definitely cases where you don’t want to throw your voice, or child, or experiences in the ring. I am still coming up with a litmus test of things to be wary of, but here are a few:

1) If someone, a teacher, fellow parent, or anyone else for that matter is pumping you for information but not offering any in return: beware. Many times, I have watched a parent fall victim to being part of another parent’s or a teacher or therapist’s agenda because they willingly shared experiences or stories without realizing they were “on the record.” Recently a mother told me that the mother of another child that had been in her son’s class (the other little boy was pulled out of the school by said mother) called her asking for all kinds of information about the teacher and school and one particular therapist. The woman I was talking to was confused as to why the parent calling her wanted this info as her child no longer went to the school. As it turns out the parent calling was in the process of filing multiple complaints and needed other parents to offer “support” via their own experiences. She wisely ended the conversation as quickly as possibly with giving almost no information of use. Other parents were not so fortunate and are now testifying in the complaints. Some of them very reluctantly.

2) Try not to post questions, even innocent seeming ones, on public forums like facebook pages and groups or email listservs. You may get some great responses, but you will also get ones from people you don’t know asking you for more info. While, in general, most people are going to try to be helpful, you are putting yourself out there for EVERYONE. I recently saw a post go up on a facebook group where a woman cautioned about this as some info she put out about her son ended up in two or three website articles.  Her name and her son’s name were not used, but the statements were taken verbatim off the group page because they were public. Again, be cautious with what you share with complete strangers. Not everyone’s intentions are pure.

3) Never give out more information than what is asked for. I’ve been hearing horror stories where in casual conversation with a doctor or teacher, notes have been taken and it has negatively impacted receiving services. If the doctor or teacher asks you about one thing, make sure you answer only what was asked as additional information can be used at their discretion.

Now, if you have trusted friends or a great teacher you’ve worked with for years or therapist, I’m not saying don’t share with them. But in this crazy mixed up world of autism-related services and groups, it can be easy to get into a habit of sharing lots of information with people you don’t know or at least don’t know well. So better to be careful than sorry.


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