Our CBIT Experience

At the recommendation of our neurologist, Scott and I met with a CBIT therapist last night.  The goal of Comprehensive Behavioral Therapy for Tics (CBIT) is, in a nutshell, to train patients with tics to do a competing behavior when they feel the urge to tic.  Most of what I've read online and in my facebook groups says that CBIT is difficult for some patients, especially young kids like Gerry, but that there is some success with it...for some people with tics.  The biggest "focus" of CBIT is on displaying the competing behavior when you feel the need to tic.  However, most young kids don't have or recognize the premonitory urge that comes before their tics and, therefore, won't recognize when one is coming on.  Which kind of negates the entire point of CBIT.

The therapist was very clear and upfront about the fact that she didn't think CBIT was the right approach for Gerry at this time (because he's so young), but she does think that some form of behavioral therapy is a good idea for him.  He's been bullied a few times in school because of the noises he makes and both the neurologist and the therapist are in agreement that he needs the tools to be able to (a) recognize when he's being bullied and that it is wrong, (b) tell the person that he's not making noises to annoy them but because his brain makes him do it, and (c) tell a teacher or adult when the bullying occurs.  None of which he's done successfully so far.

So here we are.

When we entered her office, the therapist asked us to tell her a bit about Gerry.  How old he is, what he's like at home and at school, his personality; basically, anything we wanted to tell her about him.  I let Scott take the lead on this one, partly because I was legitimately curious as to how he would describe Gerry to a stranger and partly because I knew I could talk the entire session about my kid and I didn't think anyone would appreciate that.  So Scott talks about Gerry being sweet and creative and crazy and I interject here and there, mentioning that I'm concerned that he's been displaying some ADHD behaviors at home.

{sidenote: I also mentioned this concern to the neurologist but, because he's displaying this behavior at home only and not (to our knowledge) at school too, there's not a whole lot anyone can/will do as far as an official diagnosis for it}

The therapist confirmed that Gerry seems to be exhibiting ADHD behaviors (at home), which was both unsurprising and also a relief to have confirmed by a professional.  It's a known fact that Tourette Syndrome goes hand in hand with a lot of other conditions, ADHD, OCD, and anxiety being the most common comorbid conditions.

So.  We talked a bit more about what we wanted for Gerry going forward.  Because his tics aren't hurting himself or others and they're not super disruptive to his life, we don't want to medicate him right now.  We want to give him the tools and the knowledge to understand his condition and to be able to explain to others if and when it becomes more noticeable to them, and the therapist made a great point in that it's important for us as a family to be able to understand it better and kind of learn how to navigate the different symptoms and behaviors that arise because of it.  A lot of the behaviors that we're seeing at home, to an outsider, could be viewed as Gerry being "bad" or an instigator or just generally a pain in the ass.  In reality, some of it is just him being a 6 year old boy...but a lot of his behavior is directly related to his TS.  The therapist continued talking about Gerry's behaviors and then she said:

    "Some kids just come into this world with challenges.  They're not any better or worse than "easy kids".  But being the parent of a challenging child is really hard, and a lot of people think it's because of the parents.  It's not.  And it's important that you understand that.  His challenges are not a reflection of you as a parent."

You guys.  I started crying.  Right there in the middle of the office.  Like, crying to the point that I couldn't talk.  Because, until she put a voice to it, I hadn't realized how badly I needed to hear someone say that.  Being the parent of a challenging child is hard.  It is so fucking hard.  And exhausting.  And humbling.  And so many people in my life have made me feel like his challenging behaviors are a direct result of how I parent him.  I can't tell you how many times I've heard some variation of "A good smack in the ass would nip that right in the bud" or "He's lucky I'm not his parent because I'd have smacked his butt by now" or "Give me three days with him, I'll send him back to you a new kid".

He is not a bad kid.  And I don't want a "new" kid.

He is sweet and funny and creative and smart and thoughtful and polite, and I wish that the whole world got to see him the way that I do.  He's not bad.  He has a syndrome and, as a result of that, he has some behaviors that are annoying and impulsive.  He makes bad choices sometimes.  A lot of times.  But he's not bad.  And I'm not a bad (or lazy or pushover) parent because I can't and don't force him to bend to my will.  Truthfully, Lincoln's not an easy kid either.  But I'm so done letting other people make me feel guilty because my kids aren't quiet and easy and always well-behaved.  And I'm so damn thankful for the therapist who helped me realize that this is okay.

So, CBIT may not necessarily be the right approach for us right now, but we're definitely going to stay on for the behavioral therapy aspect, and maybe we'll give CBIT a try down the road.  In any case, there's a certain feeling of freedom that comes with packing away some of the "mom guilt" in all of this.  And, believe me, there's a lot...but that's a post for another time. :-)