Apraxia. Verbal Apraxia. Oral Apraxia. Childhood Apraxia of speech. Have you ever hear any of these terms? I sure hadn't before December of last year.
Childhood Apraxia of Speech (CAS) is a motor speech disorder that first becomes apparent as a young child is learning speech. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what name is used, the most important concept is the root word “praxis.” Praxis means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder. This difficulty in planning speech movements is the hallmark or “signature” of childhood apraxia of speech.
Jordan had been taking about a year of therapy at that point and the minimal progress combined with the feeding issues combined with the drooling drove me to Dr. Google. A lot of what Dr. Google suggested was apraxia. I read the list of signs and symptoms, and it sounded like someone had been spying on my son and slapped a description (or several, really) on the web for me to find. But I just looked at the signs and symptoms, I didn't bother to delve further into the rabbit hole in case I was wrong.
The next therapy appointment I asked our wonderful SLP in Oki "So I was doing some research, and would you agree that Jordan fits in the mold for apraxia?" She said yes in a very sheepish manner, which didn't ring a warning bell at the time. Now I know that her simple, one syllable answer meant years of heartache for my family and and a lifetime of struggles for my son. Soon after the developmental pediatrician on island confirmed the diagnosis, we moved to Jacksonville, NC to finish Ryan's discharge from the Corps. Between the hectic nature of moving across the world and having our second child, I was not able to get therapy started for Jordan and I didn't bother to look deeper.
He has some... feeding issues. We should buy stock in paper towels.
After miss Kylie Jaye was born I would research on my phone all about this quizzical diagnosis while I fed her.
Kylie Jaye Born: April 8, 2013
Years of therapy, neurological disorder, special education classes, difficulty in school, unable to talk with "normal" kids for years....
My baby boy was going to have such a hard time in school, and it's going to be so hard for him to make friends. He is trapped in his head, he has ideas, thoughts, stories, lies, truths and opinions all dying to get out, but they are stopped. Unable to escape. He is going to be a target for bullies and people who don't understand will snicker and talk bad behind his and our backs and I am going to need bail money!
^^^ This realization combined with post-partum hormones regulating sent me into a tailspin of sorts. I had to call my mom. My mom has been down a similar road when it came to my little brother. I knew she would have just the right words to light a fire under my ass and get me moving in a productive way. The words were something along the lines of "Yes, it sucks. Yes, it's gonna be hard. It's ok to hurt for him. But YOU are his voice, and you will have to be his advocate for the rest of your life. Finish your tears tonight, dust it off, and get back to helping your son achieve everything he wants!" I did. I cried for the heartbreak to come, and I woke up with a renewed fervor to help my son.
No sibling rivalry here! Yet...
I should note that during our crazy period of moving and adding a baby girl to the mix, I did not neglect my son. He was not put on the back burner in any way. We worked everyday with his speech and taught him new signs (we teach him ASL so we can still communicate) He made some friends in the cul de sac and we would walk to the playground every once in a while. We were only in NC for 7 months and are currently on what I like to refer to as "The Family Tour". We drove from NC to TN then to KS. Soon we will drive to MT, then CA (Maybe a stop in WA), back to KS and then to our currently undecided final destination. All the while we are teaching Jordan more and more signs and trying to help with his oral motor skills.
He loves his teddy, and asked to carry him around like I do Kylie!
He has picked up so much in such a short period of time! Since we've been in KS he has learned to sign "Can I go with Grandma/ grandpa/ dad? Please?" Along with individual words: later, beard. above, hamburger, music. And that is in the mere month we have spent here, and my mother in law has been a huge help in teaching him too. She has used ASL for years now and I am extremely thankful for all her help with Jordan (who absolutely adores her!)
After the whirlwind of this past year, I will be happy when we are finally settled in one place. A permanent home and a happy place to raise our children, surrounded by love, support and (hopefully) mountains and greenery!
I truly want to settle in a place that will be best for my children, where people are accepting and kind to their neighbors. A place that has great speech language pathologists and special education teachers that will help Jordan bloom into the opinionated, loving little boy I know is trapped inside his head.
He is happy, healthy, sweet, funny, loving, kind, crazy, reckless and ALL boy. I wouldn't have him any other way! We will get through this, and if you stumbled upon this post by searching for "apraxia" in Dr. Google (or Dr. Bing I guess) because you have received this diagnosis for your child... you can get through this too. It'll take lots of time and lots of tears, but when we are finally able to hear our child say "I love you" it will be worth everything in the world!
I love that your teaching him American Sign Language. Keep up the good work Jordan! Every little milestone brings joy and of coarse tears of happiness. Thank you for sharing your story. <3
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