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A Story I Want To Share

March 15, 2016

I was recently honored to participate in a panel discussion on how the church can minister to children on the autism spectrum. I have been thinking about that discussion ever since, and I wanted to share some thoughts on the subject. This is the first of a few posts on the topic.

I am certainly not a trained expert in the field, but I am a parent of two children on the spectrum. I have learned a great deal over the last few years through doctors’ appointments, helpful resources, conversations with friends and family members, and my own observations. Of course, every child is different, which means that our experience will likely be different than someone else’s. As they say, “If you have met one child with autism, then you have met one child with autism.” No two situations are identical. With that in mind, if you or someone you love is impacted by autism, my prayer is that this article will be encouraging.

Our Story

2011 was a big year for our family in many ways. Within the span of 3 months, we celebrated our son Luke’s third birthday, we welcomed our son Micah into the world, and we moved from Russellville, Kentucky to Columbia, Tennessee, where I began preaching for the Graymere Church of Christ. Transitions are emotional times. We said goodbye to good friends and moved all our belongings to another state (while keeping up with a 3 year old and a 7 week old). It takes time to settle into new routines, and we were welcomed here by people who have quickly become close friends and blessed our lives tremendously.

 

We moved at the end of May, and over the next few weeks and months, we noticed behavior in Luke that concerned us. We were experiencing more than our share of “melt-downs,” and he seemed to be overly focused on certain activities. We began to think this might be more than the usual three year old behavior. With the help of our pediatrician and a friend who is a counselor, we enrolled in Columbia’s Regional Intervention Parenting program (RIP, for short). We met some wonderful counselors who worked with us, got to know Luke, and guided us on our path to finding out our next steps.

 

After weeks of consultations with speech therapists and occupational therapists, we wound up spending the better part of a day at Vanderbilt Children’s Hospital. They administered the ADOS test (among others), which determines whether or not a child is on the autism spectrum. The final diagnosis was that Luke is on the spectrum. While previous diagnostic manuals would have stated Luke has Aspergers, the newest edition of the DSM treats every autism diagnosis as simply being “on the spectrum.” Shortly before Luke’s fourth birthday, we received this information and began the journey of learning what we could do to help him.

 

Autism is more common in boys than girls, and it shows up often in siblings of those on the spectrum. Our son Micah was enrolled in a Vanderbilt study that gave the ADOS test to siblings of children who had been diagnosed with autism. Over the last 3 ½ years, Micah has been tested multiple times as part of this study, and the final result is that he is also on the autism spectrum. While he and Luke are different, they are both “high-functioning,” which means you would need to spend some time with them to notice anything different.

 

Throughout this entire process, Kathryn and I were surrounded with blessings. We know that God was with us, and our parents, siblings and their families have been incredibly supportive. Our Graymere church family has been encouraging every step of the way, and I am thankful every day for their influence on our children. Their understanding and love for our boys has made a huge difference.

 

Let me make this clear – we love our lives, and we love our children. I think about how proud I am of them every day. They are growing and learning in ways that constantly amaze us. While we might not have chosen this diagnosis for them, we also realize that everyone faces challenges. When I look at my two boys, I don’t see a diagnosis. I see my sons. Yes, Luke is on the spectrum. He is also left-handed. He likes Star Wars, Legos, and Taekwando. There are many different aspects of his personality that make up who he is. Yes, Micah is on the spectrum. He also has blonde hair. He enjoys playing with cars and trains and laughing at a cartoon bear named Bernard. His diagnosis is a part of his story, but it is not the whole story. Kathryn and I feel that our job as parents is to equip them with the tools to help them as they grow and mature. Learning more about autism has also taught me there are many other families dealing with much more challenging circumstances than we are, and I am inspired by their efforts.

I know you didn’t ask for my opinion, but…

If you are a parent who is currently considering testing for your child, I would strongly encourage you to do it. Because of her background as a teacher, Kathryn was much more in tune to the issues than I was, and she did an incredible job of gathering information so that we could make a good decision. Autismspeaks.org is a helpful resource to discover more about autism and what indicators parents should be looking for in their children. It would be a good place to begin.

 

I get it – this is not fun to think about. I can still remember asking our speech therapist for an honest opinion on whether or not Luke was on the spectrum. She gave me her honest opinion, which was yes, and I was upset. It wasn’t her fault; she was kindly doing what I asked her to do. It just took me a couple of days to come to grips with that reality. By the way, I felt the same way when Micah was diagnosed. In both cases, it was not unexpected, but it did give me a shock to the system. That is a natural human response. But I think all parents realize that parenting involves facing difficult truths, praying about them, and doing your best to handle them. This is one of those tough areas, but there is so much that can be done for a child once you face it.

 

I would recommend taking your child to a speech therapist or a counselor with experience treating children. They cannot usually give a diagnosis in one session, but after two or three, they will be able to provide direction on whether or not to be tested. Think about it – what is the worst thing that could happen? For example, if you make an appointment with a speech therapist and there is no need to proceed any further, then you have just given your child a one-on-one session with a trained professional to help them work on speech and fluency. Sounds like a good deal to me!

 

If your child receives an autism diagnosis from a trained professional, a world of resources opens up to you. Since Luke and Micah are high-functioning, their scores were not low enough to qualify for speech therapy or occupational therapy from the school system. But once we received the diagnosis from Vanderbilt, we were able to get early intervention that made a huge difference for Luke and is currently making a similar difference for Micah. I cannot emphasize enough the impact of early intervention; we were amazed at how much Luke grew and developed through two years of in-school intervention. Even though it was not easy to go through all of that testing, it was worth it once I saw how much intervention helped.

 

We have not talked with our boys about autism yet. We would like Luke to be more mature before we bring that up, and we are consulting with a counselor to determine the best way to go about it. But I have decided I want to talk more openly with others about what we have learned (hence this blog post). If only one family reads this and comes away encouraged, then it would be worth it to me. There are many lessons left for us to learn on this journey, and we are confident God will continue to see us through them. The next blog entry will focus on how we can minister to those on the spectrum.

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13 Comments leave one →
  1. steve permalink
    March 15, 2016 9:09 pm

    Thanks, Andrew. My great nephew, Noah, is autistic and I know it is a struggle. Prayers and love to Kathryn!

    • andrewdphillips permalink*
      March 16, 2016 9:49 pm

      I appreciate you sharing that Steve, and I always enjoy reading your posts!

  2. Steve permalink
    March 15, 2016 9:40 pm

    Thank you, Andrew, for sharing your story. Pam and I are thankful for you and Kathryn and your precious boys!

    • andrewdphillips permalink*
      March 16, 2016 9:48 pm

      Thanks Steve – You and Pam are great encouragers!

  3. Christy permalink
    March 15, 2016 9:47 pm

    As a speech pathologist, I love your story and more importantly the fact you’re willing to share it! Early intervention as you said is so important. I tell parents all the time sometimes it’s complicated and frustrating to jump through all the hoops to complete testing and determine eligibility of services, but it’s so worth it! I look forward to hearing more about your boys!

    • andrewdphillips permalink*
      March 16, 2016 9:51 pm

      Thanks Christy. It was a long process, and it was frustrating at times, but you are right. When I see the difference intervention has made, I realize it was the best thing we could have done. I have a whole new appreciation for what you do!

  4. Linda barnes permalink
    March 15, 2016 10:27 pm

    Great job Andrew! I have not known very much about autism and this sounds so encouraging! I know we have one family, at least, at Central who struggles with this. After I read your blog to Leon, he said we need to copy this for these members. Thank you so much and I look forward to the others.

    • andrewdphillips permalink*
      March 16, 2016 9:54 pm

      Thank you Linda! I hope it can be encouraging to families dealing with this situation. It has opened up doors for me to have conversations with a lot of people, and it has given me new insight into what some families deal with on a daily basis.

  5. Joie permalink
    March 15, 2016 10:40 pm

    Well written. Very informative. Looking forward to next entry.

    • andrewdphillips permalink*
      March 16, 2016 9:53 pm

      Thanks for the kind words Joie and for all that you and Mark have done for our family!

  6. Shawna permalink
    March 16, 2016 12:51 pm

    Beautifully written. Such great parents and two of my favorite boys!

    • andrewdphillips permalink*
      March 16, 2016 9:50 pm

      Thank you for the encouragement Shawna!

  7. Judy permalink
    March 28, 2016 8:23 am

    I’ve been working in the Special Education area for over 20 years. I can’t tell you how many times I have seen people view the diagnosis over the person. It breaks my heart. Viewing them as a person first says, “I love YOU”. My interaction with YOU will only be informed by a diagnosis not clouded by it. Viewing them as a person first enables them to grow to their highest potential as quickly as possible. Thank you so much for saying, “When I look at my two boys, I don’t see a diagnosis. I see my sons.” What a gift from God, through you and to your sons.

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