Hi, I am the proud mom of Jordan. First, let me start by saying how much I love my son and how proud I am of him. I have always said that Jordan is a miracle, and he truly is. I always knew God had a plan for his life, and now I know what that is. I will get into more depth about this in other blogs or other literature in the future. Jordan truly is my hero. He is genuinely a beautiful human being.
Jordan’s Diagnosis.
Jordan was first diagnosed with Verbal Apraxia whenever he was five years old. I knew Jordan had a speech disorder, however, I did not know Jordan had Verbal Apraxia until later. Jordan was nonverbal until the age of five years old. Jordan would make sounds and make hand gestures. So, he would always make a way to let us know what he wanted or needed. We could communicate with him nonverbally and understand him, however, others could not. People always assumed Jordan was just quiet or shy. Jordan could not be understood verbally until around the age of 12. Close family members could understand him but his peers could not.
The Emotions.
Emotions surrounding the diagnosis, I tried researching anything and everything about Apraxia, but there was nothing on Apraxia. There were not any resources available. This was the was the early 2000’s. Nobody knew what Apraxia was. I would call everybody and no one would have any experience working with a child with Apraxia. When Jordan would have a new speech therapist they would be shocked at how severe his speech was. I had so many emotions. I got tunnel vision, and I knew what I had to do for my child. I knew I needed to advocate and find every resource I could find for him. I knew I had to be at school as much as possible. I went into fight mode, essentially. I knew I had to do everything that I could do to get him the help and services that he needed. I would say, “We have a no child left behind law, and he is not getting left behind. Jordan is not falling in between the cracks.”
Teaching the World about my child.
I had to teach the world about my child. The first thing I did was research everything I could find on apraxia. The next thing I did was get on the phone and started making phone calls if I felt like Jordan wasn’t getting the help that he needed at school I would call the county; school board members; our school district or I would call the state. I had so many meetings. There was not going to be a stone left unturned. I made a list of everything I wanted for him and faxed it to the school. If they told me it couldn’t be done, I said it can be done and it’s going to be done. I had the school to have a speech-language pathologist come into the school and explain to the entire school staff exactly what Apraxia is. That it is not a speech delay that it is a neurological disorder. It was hard for Jordan because he could not be understood. It was honestly heartbreaking. One day Jordan was intentionally left out of school for a doctor’s appointment, where they held a meeting for the whole school about how everyone is different. These things were on the list that I had faxed to the school. The cafeteria lady memorized his lunch number, so Jordan wouldn’t feel awkward going through the line, etc.
The fight for services.
I got Jordan speech therapy five times a week, forty-five minutes a session, every week including summers. They told me this couldn’t be done, but this was done. IEP meetings are so important. Always have someone go with you to your child’s IEP meetings. The IEP helps and protects your child. Make sure it is followed. I was either at school or on the phone constantly. I will never forget picking up Jordan early from school one day for a dentist appointment, and the office was full of people- and I thought, “Something really big must be going on here”. I noticed they looked at me kind of funny in the office, and I later found out it was because of me calling the state. It’s important to keep the lines of communication open, and you have to be firm with your advocation. Because if you are not, you will not get results. I am nice but this is my child and he was going to get the help he needed. When Jordan was in the second grade, Jordan couldn’t read nor write. It caused him so much anxiety, so I had to get his speech therapist to teach him to read and write. Because if he couldn’t sound out the words, how was he supposed to read or write them? However, they didn’t understand this in the classroom. I could tell you so so so many stories. Once the SLP worked with him on this, was when he started making progress with reading and writing. I kept telling the school, teachers, and SLP that it’s repetition. Please remember you have to be an advocate, but it’s also important to stress it’s repetition, repetition, repetition. Jordan worked so hard and so very hard for his voice.
The Anxiety.
I use to tell people all the time “Imagine being Jordan. Imagine knowing what you want to say, however, it won’t come out.” It caused Jordan a lot of anxiety not being understood, and he would emotionally shut down after so long. You could see the sadness. Children were unintentionally cruel at times, and sometimes intentionally cruel, asking:
“Are you from another country?”
“What language is Jordan speaking?”
“Why does he talk like that?”
I will be honest I was at the school constantly. I went on every field trip; Jordan had a note also in his pocket with my name and number on it, in case of emergencies. I was in Target a couple of years ago and I saw one of the teachers from one of the schools he attended. He told me that the school used to have meetings about me. It is so hard seeing your child struggle. Jordan’s apraxia was so severe. I had so many fears. What if he gets lost? He can’t say his name. I had one of his teachers tell me she never understood a word he said the whole year he was in her class. I have never met another child, nor adult, with Apraxia to this day. We tried to shelter and encourage him. Let your child know that you are there for them no matter what.
Advice to Parents:
You will be your child’s voice until they can be their own. It was my honor and privilege to be Jordan’s voice. You also know your child better than anyone else. You know what works best for him or her. Don’t let anyone tell you any differently. Give yourself a break. You are going to have a lot of emotions. Breathe and take it one day at a time. Let your child be who they are. Celebrate each milestone. Let your child know you will always be their biggest supporter. There is a light at the end of the tunnel. There will be so many defining moments in your child’s Apraxia journey. I’ll go into more detail about that in the future. There will be victories!
BECAUSE APRAXIA DIDN’T DEFINE JORDAN. JORDAN DEFINED APRAXIA.