Apraxia and the village.

I work in the schools a few days along with my private practice work.  I say I work in the schools because I like working in Ashlynn’s school, and that’s partially true.  However, I have always in my career had at least one child on my caseload with apraxia in every school in which I have worked.

If you have a child with apraxia, you’re probably thinking, “what’s the big deal?”

If you are an SLP, you might be thinking, “Wow!  I’ve only ever had one, or none, or….”

Anyway, if you are in the apraxia community, you know about the “apraxia coincidences” and if you know me, you know I don’t believe in coincidences.  So part of me feels like I’m put at a school I am at because I can be of service and have a connection to a particular child, with Ashlynn’s school being no exception.

Currently I have a 4th grader that I see and I can only say so much because of confidentiality, but I love this boy.  Actually, I wrote about him once.  You can read about it here, but it turns out, I was right.  He’s gifted.

Ha!  As I went to link that last post, I had actually included this graphic two years ago.  How things come full circle right?

Anyway, his nonverbal IQ is off the charts and now he’s in the gifted program.  However, he’s a fourth grader and still can’t read or write, such is the extent of his disability.  I can’t imagine being so smart, but being unable to read or write.  Such is his life.

We have every AT tool at his fingertips.  Technology though still hasn’t totally caught up to the extent of his disability.  His grades remain sub-par, and he is unable (and many times defeated so he’s unwilling) to produce any written work.

There are sooo many people in this boy’s life who believe in him and who want to help him.  Meeting after meeting takes place behind the scenes.  I’m serious.  If you don’t work in the schools, you have NO idea the mobilization and time occurring on behalf of our children.  I know his parents don’t.

Anyway, after at least two major meeting of the minds with every professional expertise (OT, Speech, SPED, gen ed, ATRT specialist, TA), we finally came up with a plan we thought will help him become more independent with his school work regardless of current reading, writing, or spelling ability.

We set a meeting date of today with ALL of these above listed professionals and the child.

Let me take a quick digression.

A week ago, I posted on my SLP Mommy of Apraxia/Dyspraxia Fb page that the librarian at the school stopped me to show me this book called “Fish in a Tree.”  The book is written by a woman who had dyslexia as a child, and writes a fictional novel based on real life events about her life and the people in it.

The librarian read this one chapter to me the other week, in which the girl’s teacher listed famous minds of our past and current generation.  They all were brilliant, but as it turned out, they were all believed to have had dyslexia.  I was so inspired.  I couldn’t WAIT to read it to my 4th grader.  The librarian was going to read it aloud to the entire class during library time, but she wanted me to read it to this child first so he knew we were all thinking of him.

Today I got the chance.  I asked him if he knew the names of the people and what they were famous for.  He didn’t disappoint.  He can’t read, but he knew most of them as I read them to him:

Thomas Edison? – “Invented the light bulb”

Alexander Graham Bell?  – “Invented the telephone”

Albert Einstein? – “Really, really, really smart.” 🙂

Walt Disney? – “Made Pluto!”

The list went on, and as I read the pages to him, some he knew and some he didn’t, I swear I could see a spark glow in his eyes and it was everything I could do not to cry.  People, this boy is as brilliant as all these people I was reading to him.  I honestly believe that, and it’s not just me….EVERY professional who works with him feels the same way; but if  you can’t read, and you can’t write and you’re in the fourth grade, you don’t feel that way.

I barely got through reading the entire thing without completely breaking down.  When I finished there were stars in his eyes.  I’m telling you.  Bright, bright stars, and he smiled as he said, “Wait, all those people were like me!  They couldn’t read, but they were super smart and they invented stuff BECAUSE they weren’t typical.”

I nodded my head.  That may not be a completely accurate assessment but I sure wasn’t going to contradict it, would you?  Oh, and I should mention, his comment came after a therapy session we had a few weeks ago in which I showed him Mikey from Mikey’s Wish who was talking about “neurotypical” and “neurodiverse.”  I knew he was alluding to this because he was inspired by the idea of being “neurodiverse.” (Thanks Mikey).

As fate or coincidence would have it (coincidences aren’t coincidences), let me take you back to the meeting of all the professionals, the village, that helps this 4th grade student.  We scheduled another meeting, this time to include him.  It just happened to be that it was right after I read him those excerpts on these brilliant minds needing to find another way to express themselves.

I took him to class where the meeting was about to take place, and his awesome 4th grade science and math teacher, who had already prepped him (for being in such a daunting meeting by himself with so many adults) told him we are here because we believe in him, and sometimes great minds have to find another path to greatness.

His eyes lit up.  “Like Albert Einstein, and Disney, and the guy who invented the telephone!”

People, the tears were in full force behind my eyes, but I still didn’t let them go.

As the entire special education and general education team piled in, I watched this incredible strong and resilient 9 year old, listen to the plan set before him.  He was surrounded by people who loved him, but still.  He was outnumbered by 1:9 and he listened to our plan on how to help him read and write using technology, and, get this….his VOICE.   Yes, his VOICE would be a huge part in his written output via voice memo, and that’s possible, because he has one.

We are all under no illusions.  We know this will be hard for him.  We know he will be frustrated and maybe even resist.  But literally, 8/9 people at that table believe he is capable (the 1 out-liar being him), and as one of his reading specialists said, “Maybe he doesn’t believe he can do this, but hopefully he will remember all the adults who think he can and it will keep him moving forward.”

I was so proud to be sitting there as part of his team….his village; because we all know, these kids need a village.  I was trying pretty hard to reign in my emotions.  I thought about how lucky Ashlynn is to have this village too.  I don’t need doubters in her corner, I need believers; and I really know we have that.

Oh, and about my 4th grader.  Believe me when I tell you he has BIG ideas.  His ideas cannot be adequately explained through his reading, his writing, or even his voice. I predict one day these BIG ideas will be turn into something even bigger.  I look forward to seeing it.

 

 

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