Meet Levi ~ An Interview with Jen Godzwa

Jen Godzwa is a loving wife and dedicated mom to three energetic and fun-loving boys, ages 6, 8, and 10. At the age of 5, her son Levi (now 8) was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), an autism spectrum disorder. She shares her experience with us both to help foster understanding and to encourage other families who may have their own experiences with disability.

Introducing Levi…

Levi is a great kid! He is inquisitive and happy, and loves to be around people. His most recent loves are lego sets, french fries, Spiderman, and jumping off the couch. There are many typical things about Levi, but he also has autism. His ability to communicate is stilted because his neurology doesn’t always allow him to understand the words that he hears or to take his thoughts and turn them into words. It is hard for him to make eye contact, and he is easily distracted by things around him. He may seem a bit stand-offish at first impression, but anyone who takes the time to communicate with him at his speed will find that he is an interesting kid.

On learning about his special needs…

When Levi’s younger brother started to surpass him in some developmental skills and his Pre-K teachers commented that he wasn’t responding to them in class, we began to struggle with the decision to have him evaluated by a professional. We were worried, though. We had heard that misdiagnoses are common and didn’t want our child to be mislabeled and then stuck with that label. I didn’t realize that the label could actually get him much needed help in the classroom.

There were times when it was hard to really pinpoint what was so worrisome. Sometimes while trying to explain his behaviors, they wouldn’t seem so out of the ordinary for a young boy (tantrums, fixations, picky eating, can’t sit still, doesn’t talk much). But having a professional thoroughly evaluate him helped me understand a little better what was going on and pointed out his strengths as well as his weaknesses. Receiving the diagnosis was difficult and took some time to digest, but ultimately it gave us somewhere to go, something to read up on, something to do. It gave his challenges an identity, and we could look to others who had gone before us for advice.

Some of the behaviors I read about – meltdowns, for instance – are behaviors that many kids have. But realizing that the diagnosis of autism is a specific mixture and frequency of behaviors surrounding social interaction, sensory sensitivity, and communication abilities helped me understand his diagnosis. It also helped us understand that when Levi didn’t respond to us, it wasn’t because of belligerence or defiance, but because he wasn’t able to.

On thinking outside the box, literally…

Language is Levi’s primary challenge. He processes language more slowly than his peers and has to work harder and think more creatively to express his thoughts in words. For example, today he was describing something he did in school. He said they were playing a game where they had to put sticks in a “cart without wheels.” I asked him if he meant a box? And he said, “yes, a box.” So although he was not able to recall the word “box,” he found a way to describe his thought: a cart without wheels.

A speech pathologist we saw explained his cognitive difficulties to me this way: we all have thought and can think elaborately about these thoughts by connecting them to language. If we can do this, we can build bridges between thoughts. Levi’s ability/inability to think abstractly is directly related to this.

On the uniqueness of every child…

Because autism is a spectrum disorder, it manifests itself in many different ways. Some people cannot speak at all. Some cannot stand loud noises or the feel of a tag in their clothing. Some cannot break out of their daily routine without a meltdown. As the saying goes:

“If you’ve met one person with autism, you’ve met one person with autism.” ~ Stephen Shore

On the anti-social myth…

There is a myth that people with autism don’t want to be social; in reality, they do, they just don’t know how. Levi begs for playdates with his friends. He loves to be with other kids.

I think it can be intimidating to try to communicate with anyone who is not like you, whether they have a disability or simply do not speak your language. People with Autism Spectrum Disorders just need a little more time to process what is being said to them. That means slowing down, waiting for a response, avoiding figures of speech and idioms, and generally a little more effort.

A thought that is often conveyed in the autism community is that being non-verbal does not mean a person has nothing to say. I am amazed to see the writings of adults with autism, some of them who cannot communicate through speech at all. Realizing that helps me have more patience to wade through the slow communication to find out what is on the other side.

On the challenges of navigating disability…

Probably the greatest challenge is figuring out how to not only find Levi the help that he needs, but also figuring out what will actually help. On top of that, the cost for therapies that are not covered by the state (public school) is astronomical. After getting that initial diagnosis, the doctor may give you a referral and/or some suggestions for home, but that might be it. The school will begin services, but there is little accountability and often the service providers are not available to discuss with the parent what is being done, and how you can help at home. Professionals sling jargon that is hard to understand, and it starts to feel impossible to grasp exactly what your child needs. And beyond therapy, there are diets, supplements, and all kinds of alternative approaches being peddled to parents who just want to find a way to help their child. It can be very confusing and even paralyzing.

On resources for parents…

Our best resources have been Levi’s developmental pediatrician and teachers at his school. I have also found some great blogs and resources online; my favorite is probably adiaryofamom.wordpress.com. Talking to other parents who are dealing with similar situations can be both therapeutic and helpful in a practical way.

On how others can best support families with special needs…

Talk about it, if the parent is willing. Ask questions, things like, “What is the biggest challenge? What does he like to do?” Don’t feel sorry, but try to be a friend and sounding board for the parent. Offer to watch their other kids during therapy or doctors appointments. If it seems do-able, invite the child over to play for a playdate, or have the family over. Learn as much as you can, and attempt to interact with the child. Value the child with the disability for who he or she is, realizing that they are more than just ‘autistic’ or ‘downs’ or ‘ADHD.’ This kind of friendship and acceptance can be hard to come by in a society that values efficiency and convenience, but can fill a void with a family dealing with special needs.

On the ‘special’ in special needs…

One of the greatest things I have learned through our experiences with Levi is that life has not always turned out as I’ve expected, but his disabilities have been the source of much unexpected joy and hope, and I’m glad for it. Sometimes I think about what Levi would be like if he woke up one day without Autism, and I’m not sure what that would be like, because it is all rolled up into who he is – an amazing boy, one I wouldn’t want to trade for any other child.

3 Comments

  1. Nick Tavani says:

    Nicely expressed, Jen. Our Jonathan is 11 1/2 and has Downs and is autistic. Yet God knows how this boy reflects His image, as does every special needs person, to a world that can only learn about this aspect of God’s Being through these messengers. After we named him Christopher Jonathan it was only later we learned his names mean Christ-bearer and Gift From God. They are here because we need them and those who allow them to mold and teach us ultimately understand why. And then God smiles.

  2. Mike Kelly says:

    Jen,
    So great to hear more of Levi’s story. And great to meet you last weekend! Hope to meet Levi someday, too. And the rest of the Godzwa tribe! Truly a blessing kids are and how God has wired their brains. SO thankful for doctor’s who can help us all understand how to share these beautiful children of God and for them to make their own mark on life.

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