Conference Realizations

Just got back from the Apraxia Kids Conference in Pittsburgh. The information and expertise at your fingertips, every minute of the day, for two and a half days; it's empowering and overwhelming, in the best way possible.

I wish I could give a breakdown of each session for those reading this, but I cannot do them justice. The respective speakers covered a lot of material in so little of time; from techniques for fellow SLP's, the potential role of Genetics and the Brain on a child with CAS, other diagnoses that may play a role in this journey, firsthand experiences, and even Fathers' and Siblings' perspectives as well.

Simply put, there is something for everyone at this conference.

But, for me, this conference; I struggled with my own identity and what niche I related to. Sure I am a blogger and on the board, but even these are a small niche with a group of 500+ people.

You see, I am not an SLP.

I am not a Parent with a child diagnosed.

I am no longer an older child or young adult with Apraxia.

The last line is a tough pill to swallow. But, here me out.

I quickly realized I am closer in age to the parents attending the conference for their children, then the diagnosed children themselves.

     The average age gap between me and the young adults with Apraxia: 6-7 Years.

      The gap between me and the other Parents ( those who I talked to): 2-4 Years. 

This realization, of no longer being a young adult or older child with Apraxia is a new turning stone. One I never thought I'd have to navigate before.

This phase is terrifying and empowering. Unappealing, yet so tempting. It feels like dejavu; making me question if I am honestly having to do this yet again.

I find myself at this uncharted territory, where I do not have peers that navigated the mid-late twenties with Apraxia of Speech.

See, at 15, I was terrified when I made that decision to withdraw from speech. I confidently owned it and I still stand by it today, but I saw no other peers that had navigated the teenage years with a speech disorder. I was doing something brand new in order to pursue my dreams of going to the best University possible.

But now, ten years later from that decision, I am now facing a new phase of mid-late twenties with a speech disorder.

At both instances, no one tells you what it's like living through each phase with Apraxia.

No one tells you how to navigate any of the typical mid-late 20's moments, such as:

  • How do I describe my speech disorder at a bar? 
  • Do I have to change my wedding toast, so my peers understand me?
  • What if there's a bully, what do I do as an adult? Call them out, yes, but that doesn't stop me from crying.
  • If this is genetic, should I find out? If I find out, will I be deterred from having my own children? 
  • Will a future partner, or husband, resent me for giving this speech disorder to their child? Better yet, can they even handle the journey? 
  • What if an employer asks about my accent in a job interview? 
  • Do I tell my online date that I have an accent/speech disorder before I meet them in person or just wait?
These questions, concerns, or what have you-These are the thoughts that go on in my head and now in my journey. These are my questions that the majority at that conference couldn't attest to nor could they relate to. 

Why? Because this is a very small niche in a community that is just developing and one that few have even considered. 

The only way I will be able to answer these concerns is as I live them. Not ideal, but not impossible.

So, where do I  go from here?

I will always work and volunteer for those children diagnosed with Apraxia as a Board Member and an overall Advocate, because I wish something like this community existed when I was growing up. Perhaps it's a bit different not having a child of my own diagnosed and not being an SLP, but that does not discredit my passion, interest, or perspective. 

All I know is this conference, my realizations, and my excitement and slight intimidation just means that this advocacy will continue to grow. I don't want my Apraxia Advocacy or my Apraxia Journey to change, but I truly want this unknown to grow and blossom into something beautiful and different. As I told my parents, I don't want to change my advocacy, but I want it to grow.

I thought my Apraxia Journey was over, but as I approach this next phase, I was clearly mistaken.