My name is J.R.

**Names changed to practice internet safety and protect the children.

Hello. My name is “JR” and one of the conditions I have is called apraxia (speech and motor). It is a neurological condition where the signals from my brain get lost before they make it to my muscles and don’t make my muscles work like I want them to. It makes it very hard for me to speak, and I often fall on the ground for no reason or bump into things because I can’t get my muscles to do what I want them to do.

You may have heard of speech apraxia before. When I was just 18 months old I only used one word “dada”. “Mommy” or even “Mama” was always hard for me and it took a long time before I could call my mom anything using my voice. As I have been growing up for many years I could only point and grunt to communicate my needs. Mommy and Daddy had to play lots and lots of guessing games and yes/no games to figure out what I wanted. It was frustrating for all of us. Mommy and Daddy were persistent and got me help from a doctor with speech therapy that started when I was almost 3. As I learned to try more words my talking was using almost all vowels. When I did start to gain a few words I called my mom “bubba” and she gladly accepted that title. Only my mommy, daddy and brother could understand maybe half of what I would say. Most people that didn’t know me couldn’t understand anything.

I am 4 ½ years old now! I have worked very hard for almost 2 years and I have come a very long way! Now - If I don’t act shy and get comfortable enough to talk to you, you may be able to actually understand a little more than half of what I say. Mommy, Daddy, and brother can now understand about 80% of what I say!

One of the hardest things for me is when I get emotional or my surroundings get overwhleming. It doesn’t matter if it is super happy, sad, excited, mad, frustrated, curious, or shy. Any emotion takes over my brain and locks up my words. I just can’t get them out sometimes no matter how hard I try. It makes me sad and mad.

I also have trouble with motor apraxia. My muscles just don’t always get those brain signals and I bump into things all of the time and fall a lot. I am in physical therapy, Occupational Therapy, Speech Therapy, Habilitation, and Development Preschool to help me with all of my challenges.

We don’t know if I will ever be like everyone else with my muscles walking and talking. But I have come a long way and mommy, daddy, and brother are very proud of me and how far I have come. I am so grateful for all of the support I have and more than anything just want to be treated like and do things all of the other kids do.

Thanks for reading this. Chances are we met recently and mommy pointed you in this direction to read more about our family. If so, it was nice to meet you! Mommy and Daddy love to support other parents and families. If you ever have any questions or just someone to talk to I know mommy would love to meet, chat, or even just email with you. She is such a nice lady. Her name is Becky and you can email her at livinghopejourney@hotmail.com.

Thanks again.

“JR”

For more information on speech apraxia you can go to www.apraxia-kids.org

Hope and Joy

Six years ago, when our oldest son was only 6 months old Dan was in a bad accident at work (June 2008). He broke both arms – crushing his right wrist and multiple fractures in his left elbow. He had both arms in a cast, multiple surgeries and months of therapy.  He couldn’t even hold his son on his first father’s day, the accident was the Wednesday before.



Dan day of surgery#1, 3 days after injury.

As the months went on after Dan’s injury it just seemed like instead of getting better, things just kept getting worse. Dan couldn’t use either arm or hand well. He had a second surgery on his wrist, and it still never healed right. In the midst of hand surgeries I had the challenge of taking care of our 8 month old son, caring for Dan, and at one point we had his grandmother over taking care of her for a few days – all while still working my full time job. Then just after Dan’s second hand surgery in the fall of that year I received official notice that I was being laid off due to a mass staff reduction at my company. The burdens were heavy.

We did our best to move forward, taking things one day at a time. This was life right? Things happen. We still went out into the world, and did life as normal as we could. One day we were with a group of friends. Someone Dan knew, but didn’t know well walked up beside him. He looked at Dan and with the most genuine heart said to him “I don’t get it. I see you around, I have been watching you. I know everything you guys have been through and what is going on in your life, and yet you still have such joy? How do you do it?” Dan never thought of it that way. There was still so much to live for and be thankful for. As a family we know there is Hope beyond our circumstances.  

Years later, now 2014 and a million more crazy unfortunate things have happened to us. We have gone through many deeper valleys in our lives even in the most recent couple of years. At times we have lost that joy.  That friend and that moment always stuck with us. We realized at that moment we had joy through it all because we were completely immersed in something (volunteer group) that we were passionate about. We had that passion and we lived with Hope. We chose Joy.

Life will constantly throw curveballs and forks in the road. Life is messy, and let’s be honest sometimes we are the ones that make that mess. But what gets you through that is being intentional about finding passion, finding purpose, living (with) hope and choosing Joy.

My Acceptance

Hello again April 2^nd…..Autism Awareness Day. Last year at this time was my first April on the other side of Autism. I hadn’t even come to terms with MJ’s diagnosis just 8 months earlier, let alone be ready to advocate or celebrate. I wasn’t ready to face the fact that my son was going to face challenges for the rest of his life. I wasn’t ready to acknowledge reality or embrace the circumstances we were given, that MJ was given. 

Then through the entire process of getting MJ what he needed through 2013 (including an unrelated brain surgery) we faced the challenge of helping his younger brother JR who had regressed in speech and dramatic change in personality. We started seeing major regression in JR in spring of 2013 to the point where (like my feelings with MJ)  - I felt there was something more going on. 

In August of 2013…a year after his older brother was diagnosed with Autism and Hypotonia…JR was diagnosed with Speech Apraxia, Hypotonia, and At Risk for Autism. He has severe speech delay, social avoidance, melt downs, and sensory issues. So we began the journey with JR of evaluations and services. 

I pretty much stopped blogging through the end of 2013 because we were so overwhelmed. I couldn’t find the peace or the purpose. I realized it was hard for me to see God in our circumstances because I hadn’t accepted our circumstances. I couldn’t accept that Autism was a part of our lives with both boys and we were now, and will always be a part of the Autism family. 

So the last 6 months while I didn’t blog or get involved in many activities: Prayer, deep conversations with my husband Dan, and complete focus on God, the boys and our family unit is what I did. I have a ways to go to get to peace or celebration, but I am approaching acceptance. 

My kids are amazing and beautiful gifts from God. My being intentional to face my emotions head on and reach acceptance is not just for me. I need to reach acceptance for them so that I can be strong, courageous, celebrate the beauty in their lives and teach them to do the same. 

So this Autism Awareness Day and April Autism Awareness month I take my first step to acceptance. This is a huge step for me, but with Dan by my side we decided we were going to “Light it up Blue” for our boys this year. And we will begin to seek out and take up more opportunities to be an active part of the Autism community. 

Psalm 27:13 (NIV)

¹³ I remain confident of this:
    I will see the goodness of the Lord
    in the land of the living.