Sunday, November 27, 2011

Do-It-Yourself Speech

A few weeks ago our slp (speech language pathologist….aka speech therapist for you who don’t spend your days in the special needs acronym world) left the hospital for another job. Frustratingly she’s just across town but our insurance requires us to pick a hospital and we need to pick Mayo for reasons that are probably obvious after my last post. Caden has been with this slp for over a year and I have to say she’s helped him make tremendous progress and honestly he loved going to speech which is a huge accomplishment in and of itself.  We were devastated that she was leaving but we were optimistic that our new slp would find a groove with Caden as well and progress would continue.  Unfortunately when the supervisor prioritized kids Caden wasn’t at the top of the list and thus we haven’t been reassigned yet.  After Wednesday’s conversation with said supervisor it looks like it’ll be at least another month before they even discuss scheduling therapy for Caden again.  I have no idea what criteria they used for prioritizing kids but obviously progress, diagnosis, and potential for regression weren’t considered.  If I were being fair I’d acknowledge that they probably have limited resources and hiring a replacement takes time but considering I know a bit of the backstory as to why our slp left and that this is my child and his future we are talking about, fairness and rationality are out the door.

Since Caden was diagnosed we’ve heard and read all about the “window of opportunity” that exists for obtaining speech and while no one knows exactly when this magic door closes, when it does that’s it for speech development.  Caden has worked so hard to make progress on speech and he knows so many words—if he can just learn to make sounds so that others can understand him his potential will be so much higher.  He’ll be able to communicate with others and honestly I think that will decrease some frustrations and certainly increase the potential for relationships and his overall happiness. So we’ve been researching do-it-yourself speech. We’ve purchased a few apps (when all else fails, buy an app is my new motto) and we’re collecting tips on how to teach a child articulation.  For example did you know that having a child hold a cheerio to the back of their front teeth with their tongue is “perfect” for practicing the mouth placement for the L sound?

Seriously try it-- it does work but who would have known that but an expert.  Crud I’m still trying to use the “Caden look at how mommy says the word” as if he can see what’s going on in my mouth with my tongue when I say a word method. Now if you were to ask me how to research, write or deliver a speech I’d be your gal. If you wanted to know more about organizational communication, I could give you tips and tricks all week long (note: if I weren’t so tactful I would shameless self-promote by inserting a nifty hyperlink to the 3rd edition of my organizational communication textbook but since I’m tactful…). But I didn’t develop any of that expertise by googling it, I went to school (as my parents would tell you for a very very very long time). I’m assuming that’s how the above name speech therapist figured out that the cheerio trick would work for the L sound. 

I learned growing up that you just need to try your hardest and in most situations I’d probably agree with you but when it’s my child’s future, what if my best isn’t good enough? What if he gets left on the wrong side of the door because I didn’t google the right thing or know what to do with the information once I found it—seriously I have no idea what to tell him to do with the cheerio next…I’m just hoping he doesn’t choke on it. I don’t think I’m alone in this boat---special needs parents, at least the ones I know, are willing to do anything and everything for their child to ensure that child has the best and brightest future possible.  But while we are all experts in our child, we still rely on specialists to help us move that child forward. Unfortunately the resources and experts often aren’t available if and when we need them.  For most paying for services out of pocket usually isn’t an option, insurance may or may not be available for that particular service, and therapists may or may not have a waiting list (wait lists for speech therapy can be between 6-18 months long).  With autism rates in the United States around 1 in 110 can you imagine what our future looks like if these children don’t have access to the resources that they need now so that they have a shot at a productive future? 

Okay I’m stepping off of my soap box in a blaze of glory and gracefully exiting stage left or right or maybe out the back.  I still haven’t figured out the cheerio trick so for now the letter L is on hold but I will say that we heard some pretty amazing work with the letters p and f this weekend and we’ll keep working and hoping that we’re doing something right.  And if anyone figures out what to do next with the cheerio be sure to let me know!