I’ve never been the quiet, reserved type, although I’ve learned recently that I’m an introvert/extrovert hybrid and honestly lean more towards the introvert end of that spectrum.  I used to resist time alone and now I crave it and need it to recharge.

I’m vocal when I need to be and especially if I’m really passionate about something, but in the past I would defer to the “content experts” in the room – whether it was a meeting, a class, friendly discussion or a doctor appointment.

So when we began our sensory journey I made the grave assumption that the therapists, doctors and specialists on our team knew best.  What I learned, however, is that my gut is the real expert.

I’m not talking about the process of diagnosing, being up on current research, or laying the groundwork for a solid medical plan.  Those aren’t my areas of expertise and I always listen to what our providers suggest and how they support their decisions to know if it’s something that we feel good about.  The last part is important.  I can tell by the way my gut feels during and after an appointment if something is going to work for our family or if we need to go back to the drawing board.  It took me a while to realize that.  But now I really pay attention to it – it’s a knowing of sorts.  Intuition at the most granular level.

My kids are my area of expertise.  My gut never lies.  And I continue to learn to trust that.  So when a nurse in the ED a few weeks ago was oblivious to how her constant talking was further agitating Max in an already stressful situation, I was frustrated that I didn’t assert myself and politely ask her to stop talking, as it was putting him into sensory overload (and quite frankly Mike and me, too!).  Trust me, that will not happen again.  I keep coming back to the idea of “what you permit, you promote” and that helps me assert myself in the toughest, most challenging moments when I need to advocate the most.

I talked about the worst therapy experience we ever had with Fletcher in this post from last year.  Never returning to that therapist was the first time I really felt empowered to make that kind of decision on behalf of my boys with regard to their sensory needs.  And I’ve made several since.

Ultimately, there is absolutely no one else who can advocate for our boys like Mike and I do.  No one.  So if not us, then who?  We have a responsibility as their parents to be fierce in our quest to provide them with access to the tools they need to live their truest, most authentic lives.  Even (and especially!) when we’re made to feel like someone else knows better.  No doctor, therapist or educator knows our kids better than we do, no matter how amazing they are, but they do play an important role.  Each professional that enters our sensory circle contributes to our collective ability to get our kids what they need – sometimes that means strategies or interventions that are successful and other times it is more about teaching us what doesn’t work.  We view both scenarios as positive on some level – even if we’re left feeling frustrated, defeated or unheard. Ultimately, it all helps us get to a place where our kids have access to the tools they need.

As we approach an extensive and involved medical procedure for Max, we’ll be carrying this concept of fierce, unwavering advocacy with us. Advocating for him isn’t a choice.  It’s a necessity.