The "Non-Support System"; When Others Don't Believe It's Tourette's

So, your child is just diagnosed with Tourette Syndrome, and what do you do?  Well, in our case, we went right out feeling the need to talk to close friends, family, school administration and teachers about Thumper's new diagnosis.  We thought that was the thing to do.  Boy, we were sure wrong!

First we went straight to the school psychologist and emailed his school teacher.  We felt it was only right to alert those trusted adults who were most closely working with him on a daily basis.  While the school psychologist seemed very open and offered to help in any way possible, Thumper's teacher seemed to be on this "Thumper is completely perfect" kick.  It was really weird.  She was a great teacher and loved him, but it was as if she refused to believe there could be anything was wrong with him and she almost made it seem like we were being awful parents to even suggest it.  I didn't expect anything from her really, but at least I thought she would accept the professional diagnosis and be willing to help or accommodate if needed.  She did say she would do anything for our son and how much she loved him, but she kept reiterating how much everyone just loved him and that he was so perfect that there could never be anything wrong with him.  It was just a little odd.    Maybe it was all in my head, but it was just like she could talk around the subject of my emails, and instead of answering my questions, she'd more over state how wonderful Thumper was and that all was well.  While I was glad that "all was well", that wasn't what I was looking for.  Maybe that wasn't our place to expect more than that from a teacher.  From further emails or correspondence with this teacher, I always felt like she thought we were awful parents trying to point out the little "faults" in Thumper, when honestly we weren't.  We were just trying to figure out why he was doing these things and then more trying to help him when he was complaining of them hurting him.  

We felt like we needed to inform the principal, and so I did, but she seemed a bit confused as to why we were telling her.  I think she asked something like, "Is there anything that I need to know that is going to affect him differently in the classroom?"  or something like that, and I felt kind of lost as what to say.  I don't know.  She seemed to be in a hurry to get somewhere and I guess my news wasn't really a big deal.  I just thought gee, maybe I was supposed to tell her as the school principal, but then again, I guess I was wrong.  Maybe I was making too much a deal of this than I needed to.  

We informed another teacher who worked with him after school of the diagnosis.  She seemed shocked and didn't believe it.  She said if he had Tourette's then she could think of plenty of others that had it, heck, maybe she had it too. I tried to explain his gulping and swallowing.  I thought that she would understand now because the last time he was with her he was gulping so badly that I think she was afraid he was sick and was about to throw up or something.  I don't think she remembered this though.

During his lesson, Thumper was badly ticking doing his scrunchy nose and ooh face and his teacher commented saying how he was making that face again like he was frustrated or didn't want to do what she said, but I told her, "No, that is the tic!  That's what I'm talking about!"  But I still don't think she understood. 

OK, so enough with telling teachers.  I guess maybe they didn't need to know.  Or at least they didn't understand.  I just didn't want Thumper to get in trouble if he was making these faces at them or gulping all the time.  I didn't want them to think he was being rude or disrespectful.  

So, I turned to family.  And why?  Well, this was our family!  We felt like it was obligation to report any news like this to family.  Isn't it?  It's important so they are informed, but at the same time, hopefully we could have some sort of support or comfort as we were still feeling sad and upset of this news and didn't know how we were going to handle it.  We wanted to reach out for help, but that isn't what we got at first.  

First off, let me say that this is not the reaction we got from ALL family members and friends, but it was we got from many:

Several family members and friends didn't believe it.  Some didn't understand "why we were always trying to find things wrong with our kids" as they said it.  Others were horrified that we were telling anyone at all because they didn't think it was business you should share with others.  Some thought it wasn't real.  Some thought it was no big deal and what were we so upset about.  Some thought it couldn't be so because if he had it, then they had it too because sometimes they bounced their leg or coughed a lot and couldn't help it.  Some thought we were crazy because they had never noticed anything so why were we making things up?  Some thought they could be helpful by making it seem like no big deal and "mimicking" Thumper's tics at times to show that it was nothing abnormal, but we felt that was just drawing more attention to it and we wanted to draw less attention by it.  

So, what did this do for us?  Well, first off it made us feel horrible.  We felt like here we were trying to accept this diagnosis and not feel like it was the end of the world, and while it really wasn't the end of the world, it would have been nice for someone to at least have empathy with us for a small minute.  Or it would be nice to think they didn't think we were crazy or awful parents to have looked for a diagnosis.  We were glad for the "It's no big deal and he will be fine," but it came without the acceptance of Tourette's.  It's like we just needed for everyone to first say, "Oh, that's too bad he has to have it, and we love you and is there anything we can do to help, or what do you need?"  And then they could give us the pep talk of "everything will be OK".  But instead we got more of the "that can't be right, I'm sure he can't have that," or they went straight for the pep talk more in a manner of telling us nothing was wrong and so why were we worrying at all. 

I suppose you just don't know how you are supposed to feel when your child is diagnosed with Tourette's.  I suppose maybe there really isn't anything anyone can say that will make you feel better.  No, we're not trying to find things wrong with our kids, and no, it isn't the end of the world, but we wish we had more of a support system.  Maybe it's because Tourette's is so misunderstood or many people don't know all the details about it.  We really didn't know a lot either.  So as we weren't getting any help from others, we decided to begin researching on our own, so that we could better understand this condition and maybe figure out some things to help make life better.