Friday, June 24, 2016

Autism: One Year Later

One year.

One year, 5 doctors, 132 therapy visits, 1 billion trillion melt-downs (approximately), 5 signs, 4 consistent words, 2 very tired parents, and one sweet, sweet voice that we are finally getting to hear.



One year ago today, Levi was diagnosed with Autism. One year ago today, I was sure we would not survive until today (Apparently, one year ago today I was a little overdramatic).

One year ago today, I remember crying to my mom in Chick-fil-a that I was so scared Levi would grow up and never have friends. And I mean, real friends; not friends who are only nice to him because their parents made them. One year later, and that is still a fear that stays at the forefront of my heart.
 
New Noise-Cancelling Headphones!


We have learned so much in the past year: things about Levi, things about Autism, things about genetics, and a whole list of new bad words to describe health insurance coverage or lack thereof.

Most importantly, I have learned a lot about God. In the past year, I have questioned, doubted, and accused more than I ever have in my life. Now, not all of this has come because of Levi’s diagnoses. A lot of it has spurred from watching people around me walk through deep, deep caverns of suffering. Some of it has come from waking up daily to the crushing reality of living in a fallen world.



However, Levi’s diagnosis was the first toppled domino that set it all into motion. I recently read a quote from New York Times Bestseller that said: “[Suffering] does not change you. It reveals you.” How painfully true I have found that quote to be. I’m fairly certain the questions, the accusations, and the doubts have always been there; shamefully hidden from even my own view. Hidden, because for some reason we have it in our minds that questions and doubts negate our faith completely. But in reality, these extremely low moments have only made my faith stronger, my trust greater, and my humility deeper. That is what moments (or years) of weakness do. They make way for the power of God as they slowly chip away the power of ME.

So what have I learned this year?



I have learned that I am a really, really terrible mom. In this initial post about autism, I wrote that I didn’t know how often I would lose my patience with Levi. Well, a year later, and I still can’t tell you how often because I just can’t count that high. I have been impatient. I have yelled (both at Levi and the ceiling/floor/air/etc.). I haven’t tried to understand him nearly as often as I should.

I have learned that I don’t fully love a lot of people in my life because I am too busy being jealous and envious of their lives. Jealous that they can enjoy the beach with their children. Jealous that they can leave their kids in the same room together without worrying about what the older will do to the younger. Jealous that they can stay home with their kids because they aren’t having to work to pay for therapies and doctors visits. How do you love your friends when you are secretly feeling these things? You don’t. That’s the problem with jealousy.



I have learned that I still expect Levi to act “normal” and I am sorely disappointed when SURPRISE, he doesn’t. I have learned that I can get really angry with God. I have learned that I care way too much about what people think of me. I have learned that I am WAY too quick to forget blessings and answered prayers. I have learned that I in no way put God first in my life. I have learned the hard way that I absolutely cannot do anything, say anything, be anything, without the Lord.

And that is the beauty in the ashes.

That is why I am so thankful for autism, for this past year, for my questions, my doubts and my desperately dark moments.

I absolutely cannot do anything, say anything, be anything, without the Lord.

That is why James says “Count it ALL joy, my brothers, when you meet trials of various kinds,” because the pearls of truth that are found amidst the temporary trials are eternally worth it.

So when I stare down this dauntless path of raising a special needs child, I will remember that this is light and momentary. When my heart aches for Levi and the hardships he is and will endure, I will remember that his earthly condition is just that- earthly. When the end of the day comes and I am so weary and defeated, I will remember that the Lord said to me “I will strengthen you, I will help you, I will uphold you…” (Isaiah 41:10).

And when, in moments of weakness, I am tempted to beg away the hardships, I will remember that “blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life” (James 1:12).


And that crown of life is what makes this a joyful journey. Not always a pretty one, not always a easy one, and definitely not always a Christ-like one; but a journey that is undeniably worth it.

Wednesday, June 1, 2016

Walk With Me

“Levi can’t move up with his class.”

It was April of last year, and Levi’s preschool teacher has just delivered the news that no parent wants to hear. At the time, Levi was 20 months and had been in the 1 year old class at school. In the fall, we had hopes of moving Levi up to the 2 year old class with his peers. However, even at that early time, Levi was already experiencing some pretty significant developmental delays as he could not walk, talk, or communicate in any way. Not only did he lack all verbal and nonverbal communication, but Levi also did not understand any words, commands, or questions that were said to him.



Although we completely understood and respected the school’s position (Lucas is enrolled at this preschool in the fall because we LOVE them), we were crushed, confused and slightly panicked about the future. Up until this point, I had been taking Levi to therapy twice a week before I would drop him off at school and go to work. Because successful therapy happens with consistency and repetition, Levi was making absolutely no progress. Between both Mitch and I working full time and Levi’s school not having the time, resources, or knowledge to work on his therapy, the consistency and repetition just weren’t present. We struggled daily between the desire to help our son and the lack of resources and knowledge to enable us to help him.

That summer, after Levi’s official diagnoses, we had a friend approach us about Easter Seals. Mitch and I knew very little about Easter Seals, but we called and made an appointment anyways. For those who are unfamiliar, Easter Seals is nonprofit, community-based agency that assists more than one million children and adults with disabilities and their families annually. They provide services, education, outreach, and advocacy so that people living with autism and other disabilities can live, learn, work and play in our communities. Just a few of the amazing things they offer are:

-       Medical Rehabilitation
-       Child Care
-       Early Intervention
-       Speech, Physical, and Occupational Therapy ON SITE
-       Adult Day Services

Needless to say, we were very nervous about sending our nonverbal child somewhere new, but Easter Seals was able to offer Levi so much more than any other place we had researched. Therefore, in August of 2015 Levi started attending Easter Seals.



No words. No gestures. No sign language. No sounds. No peer interaction. No mimicking. No walking up or down stairs. No running without falling. No understanding of any words, commandments, or questions. Easily angered. Frustrated. These were the things that described Levi’s development when he entered Easter Seals. At 2 years old, Levi was measuring at the social & communication level of a 9-10 month old. Needless to say, Easter Seals had their work cut out for them!

For the past 10 months, Levi has attended Easter Seals full time. In a typical week, he receives speech and occupational therapy, as well as physical therapy twice a month. His teachers and therapists communicate weekly about new goals for Levi to be working on while he is in class and at home. Furthermore, his teachers work tirelessly on his sign language, words, sounds, sharing, gestures, and self-help skills. I will NEVER be able to put into words how much his two teachers mean to us for the love and dedication that have put into a child that is not their own.



Signing. Pointing. Walking. Running. Interacting with peers. Trying new foods. Understanding words. Saying Words. Happy.

Not even a year later, and these are the words and phrases we are able to use about our son. This time last year we were told he might never talk. However, today, he can say not just one word, but almost TEN different words. Today, he can run without falling every few seconds. Today, he will actually interact with his cousins. Today, he will say “Wove you” as we put him to bed.

And it is all because of Easter Seals. Because they see value and potential where the world does not. Because they believed that Levi could reach a higher potential and they would not and will not stop until he reaches it.

We are so incredibly thankful that the Lord decided to use Easter Seals to answer so many of our prayers and we will forever be indebted to them for the love and effort they have put into helping Levi and our family.

If you are interested in learning more about Easter Seals, please visit:



If you are interested in making a donation to Easter Seals Walk with Me (all donations directly benefit Easter Seals clients), please visit our team page: