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.

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:

Easter Seals West Georgia

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: 

Easter Seals' Walk With Me: Team Levi

What I Didn't Know About Autism {Autism Awareness Month}

This time last year, I knew very little about Autism. I knew that Max on the TV show Parenthood had Autism. I knew that some people thought vaccines caused Autism (which I now know is NOT true). I knew that April was Autism Awareness Month and that April 2nd was World Autism Day. I knew that Levi's doctors and therapists speculated that he had Autism. And I knew, deep in the back of my mind, that they were right.

I "knew" that Autism was scary. I "knew" that Autism was awkward. I "knew" that Autism was violent. And I "knew" that Autism was never, ever what I wanted for my family.

Fast forward to today, a year later, and let me share what I know now:

I didn't know Autism at all. 

Autism is observant; reveling in the small, intricate details of life that the rest of us never stop to treasure.

Autism is dedicated; working 10 times harder and 10 times longer than everyone else for each new skill and accomplishment.

Autism is content; never needing or wanting anything more than what is already had.

Autism is fiercely loyal; dedicated to and protective of those that are special enough to be trusted.

Autism is proactive; working hard to identify the root of a problem and how to fix it.

Autism is happy; expressing joy all the way from a beaming smile down to flapping hands and kicking feet.

Autism is curious; desiring to know anything and everything about how an objects works.

Autism is disciplined; living life adhering rules and routines without hesitation or complaint.

Autism is loving; daily proving that love is an action that does not need a single word to be expressed.

Autism is sacrificial; trying new things for others even when it is extremely uncomfortable.

Autism is resilient; gracious and forgiving of every stare, point and sneer.

Autism is steadfast; living daily in a world that it does not understand nor feel accepted in.

Autism is funny. Autism is passionate. Autism is intelligent. Autism is creative. Autism is expressive. And Autism is strong.

Autism is Levi and Levi is Autism.

So, this April, I do not want you to be aware of Autism. I want you to know Autism, accept Autism, and love Autism because it is so much greater than you could ever imagine.

Autism is everything I wanted for our family and more.

The Weary World Rejoices

Like most people, I spent my New Years Eve night in my pajamas, watching the playoff game (Can you really even call it a game when the score was 38-0?), and reflecting on the past year. Okay, okay so most people are not sitting at home in their pajamas on NYE, but I can guarantee most people do spend a good amount of their day reminiscing on the past year. And if you don't believe me, log onto Instagram or Facebook and relive people's "top nine" moments or their "year at a glance". As I spent time thinking about our past year and simultaneously reading statuses & viewing photo collages about how amazing people's years had been and how good God is, I couldn't help but think

 What if your year was not amazing? 

 What if your year was really hard? 

 What if your year left you wounded and weary? 

Is God still good? 

 This is a lot of people's reality as they say goodbye to 2015 and brace themselves for 2016. This is our reality. Now before I go any further, I must attest to the many gracious and wonderful things that happened in our year. Namely, this sweet baby below. 

We have a beautiful house, an incredibly supportive and loving family, a wonderful church family. We have encouraging and tenderhearted friends. We have amazing doctors, therapists, and teachers who work tirelessly for us so that our year can be better. We do not want for anything. We are undeniably blessed. 

 We have also hurt more this year than any year before. We have faced more trials in this year than any year before. We have walked alongside loved ones who have suffered greatly this year. We have faced great disappointment, great unknowns, and some really, really hard "no"s from the Lord. 2015 was not our "best year yet" and we are not skipping happily into the new year. We are the tired marathon runner with the bummed leg who is slowly crossing the finish line, bearing wounds and dragging baggage behind us. We are strained. We are weary. We are low. 

At the beginning of 2015, I was sure that Levi was just being "stubborn" and that by the end of the year he would be talking, laughing, and playing like the normal 2 year old I (thought) I wanted. At the beginning of 2015, I never would have imagined that I would spend part of Christmas day hiding in a room crying because Levi screamed most of his way through the morning and wouldn't (and still hasn't) touched a single present that he received. I never would have imagined that after 2 car accidents, a totaled car, and car and house break-ins in our neighborhood that my anxiety would be at the highest that I have ever experienced. My sinful heart wants to be angry. My sinful heart wants to glare at God while I watch that year that I had envisioned mock me as is floats away. My sinful (and dramatic) heart wants to wash my hands of 2015 and say "good riddance, what a waste." 

What does that say about our year? What does God say about our year?

"For My thoughts are not your thoughts, and your ways are not My ways." This is the Lords declaration. "For as heaven is higher than earth, so My ways are higher than your ways, and My thoughts than your thoughts." {Isaiah 55:8-9}

To the world, and to my sinful heart, my year looks like a jumbled mess. But to the Lord, this year was fruitful and good. The hard moments, the "no"s, the grieving, and the disappointments were just as important as the moments of happiness and prosperity. The uncertainties surrounding Lucas' health and Levi's future are leading us to lean on the Prince of Peace. It is good. The anxiety that has come from car accidents and close calls has renewed my spirit of thankfulness to and my reverence for the Giver of Life. It is good. The fears that have been ignited from break-ins has caused me to recognize my false-sense of security and to turn my trust to the only true Protector. It is good. The "no"s that we have heard this year pertaining to Levi's health and ultimately his diagnosis with Autism have reminded me that all things will work together for good. 

As He passed by, He saw a man blind from birth. And His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he would be born blind?" Jesus answered, "It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.… {John 9:2}

Do I understand some of the things that we have gone through this year? No. Do I know what God has planned for this coming year? No. 

But I do know, that this year was worth it. I do know that this year was good. And I do know that no matter where the Lord plans to take us this next year, that He is, and always will be, good. 

So for those of you who are entering the new year with wounds, heart ache, loneliness, and grief, know that your suffering is not in vain. Know that your hardships will be redeemed.  Know that the darkness will not prevail. And most importantly, know that the Lord is good and His love is steadfast. "Come to me, all you who are weary and burdened, and I will give you rest." {Matthew 11:28}

1. 
   
   "I heard the voice of Jesus say,
   “Come unto Me and rest;
   Lay down, thou weary one, lay down
   Thy head upon My breast.”
   I came to Jesus as I was,
   Weary and worn and sad;
   I found in Him a resting place,
   And He has made me glad!"
   {Horatius Bonar}
   
   
   
   
   

Levi Check-In: November 2015

It has been 4 months since Levi started going to Easter Seals and receiving full time therapy there. In a typical week, he goes from 9:30-5:00, four days a week, and receives Speech, Physical and Occupational therapies once a week each (he was prescribed twice a week but because of stupid insurance, we can only afford for him to do once a week). PT was something that we added on in September at the recommendation of his teachers and his pediatrician, because he was still falling a lot and wasn't walking very well. As of today, he only falls 2-3 times a day (as apposed to 10+) so we have seen huge improvements since placing him in PT during the week!

From the very fist day that we signed Levi up to attend Easter Seals, we doubted greatly whether it was the right thing to do. To be honest, since Levi's official diagnosis in June, we have felt like we were picked up by a tornado and never placed back down. Although his Autism diagnosis itself was quite overwhelming, I think the hardest thing we have struggled with so far has been making decisions. As I am sure with most medical concerns, there are about a million different types of therapies, intervention plans, and organizations surrounding Autism. There are also about a million differing opinions about what works and what doesn't. And frankly, all of the different therapies seem pretty hostile towards other types of therapy. So here is a little sample of  how my and Mitch's conversations have gone the past few months:

Amy: Let's just try __________ therapy.
Mitch: That's what I was thinking until I read that this organization says that therapy will cause PTSD.
Mitch: Why don't we go with _________ program instead.
Amy: Hmmm. Looks really good, but then this organization says that therapy will never help our child to fit into the world around him and he will end up having no quality of life.
Amy: Also, this study says that we have to get our child in an intense therapy program by age 2 or he most likely never talk.
Mitch: ........................... (bangs head on table repeatedly)

Levi learned how to go down a slide by himself! (Thanks PT!)

Okay, so maybe the headbanging was me. Point being, all of the options have been extremely overwhelming. However, after praying and consulting a lot of people, we decided to just jump in and place Levi at Easter Seals and hope for the best.

For the first 3 months, Levi screamed and clung to me as I dropped him off in the morning. He had to be pried off of me, limb by limb, every. single. morning. For those 3 months, I walked around with a pit in my stomach wondering if he was trying to tell me something. However, since Levi is nonverbal, we just had to hope and pray that the Lord would assure us that Easter Seals was the right place for him and that he was being well cared for. And do you want to know what the Lord said?

Nothing.

For those 3 months, the Lord didn't answer us. In a culture where you can have anything and everything immediately, silence from the Lord on this subject was HARD. However, it was also GOOD. For 3 months I was forced to trust. For 3 months I was forced to individually dig out fears that had embedded themselves so deeply in my heart and give them to the Lord. And for 3 months, we saw no improvement with Levi.

BUT GOD (Don't you just love those life moments?)

But God, finally in His perfect timing, assured us a thousand times over. In the past month, we have seen more improvements in Levi than we have seen in the past year almost. Not only is he no longer crying at drop off, but he is actually happy to be there. His teachers said that he has gone from sitting and playing by himself, to interacting and running around with several of the little boys in his class. He has also started interacting more with his cousins at home. (As per Lucas, Levi sat on him this past weekend... does that count as interacting?)

In addition, Levi has started playing with several toys appropriately. Where he use to take a toy car and just throw it or spin it upside down, he is now rolling it back and forth on the floor and walls. He has also started "following the light" on his play drum set and playing along with the songs it sings (rather than just throwing it on the floor so it will light up). And last, but certainly not least, Levi has learned how to kick a ball!

Up until a month ago, we never read to Levi because it would result in a huge tantrum. He absolutely loathed reading because the words just confused him and he couldn't understand. However, this past month Levi has been bringing us books (okay just the same few books over and over and over again) to read him, signing "more, more, more!" (His favorite books are Sandra Boynton books, particularly "Pajama Time" and the "Belly Button Book") For a mommy who loves to read, this has been SO special for me.

Although all of these improvements are great, the most amazing (and shocking) improvement we have seen lately has been with Levi's signing. We started him in speech therapy in February of this year. It wasn't until the end of May that Levi finally learned one sign, "more". As of the end of October, "more" was still the only sign that Levi would use. Because of this, Mitch and I were pretty ready to quit with the attempts to communicate with Levi via sign language. However, this past week, Levi started signing "please" and has now starting even signing "more please" together! THIS. IS. HUGE. And we are so thankful and excited.

All of these things have happened because the Lord is using Easter Seals to do wonderful things in our son's life. We are relieved, grateful, and in awe of the many ways that the Lord is assuring us in this journey. Thank you so much for those of you who have been and continue to pray for Levi's development! The Lord is answering prayers, but more importantly, He is showing us how to more like Him and less like the world.

Lucas: 0-3 Months

I think this has been the fastest 3 months of my whole life! When Levi was a newborn, plagued with with a terrible case of colic and reflux, every day felt like 1,000 years. When he turned three months old I remember thinking "Only 3 months?! Surely you are at least 9 months old." But with Lucas, time seems to just fall through my fingers no matter how hard I try and hold on to it. Now, some of this is probably because we are so busy lately. However, I think a lot of it is because Lucas is SUCH a good baby.

Lucas came home from the hospital sleeping 4-5 hour increments at night. By 1 month, he was sleeping 6-7, and by 2 months he was sleeping 8-9 hours at night. Mitch and I have treated Lucas exactly how we treated Levi at his age. Levi woke up every hour until he was almost 7 months old and yet Lucas slept 9 hours in his crib every night this past week. What I'm trying to say is, I have absolutely no parenting advice or sleep advice! The Lord blessed us with a terrible sleeper the first go around, and He blessed us with an AMAZING sleeper this go around (and we are SO grateful that He did!) There are a million reasons why I am so thankful that Lucas is good sleeper, but the main one is that I went back to work full time when he was 6 weeks old. There have been a lot of really hard things about going back to work so early, and I am so thankful that I wasn't having to function on no sleep on top of everything else.

Our friend Paula came to visit!

In addition to being an amazing sleeper, Lucas is incredibly laid back and happy about 80% of the time. This is another blessing from the Lord that I did not deserve but I am so thankful for! When Levi was diagnosed with Autism in June, I started praying begging the Lord to make Lucas an easy baby. Between having a (newly diagnosed) Autistic 2 year old and both Mitch and I working full time, I was terrified of adding a colicky newborn to the mix. Thankfully, Lucas is as far from grumpy as they come! Although he does have his fussy moments, all in all he is really the happiest baby.

Lucas smiled for the first time at 5 weeks and has smiled every day since. Most of the time, all you have to do is look at him and he will immediately grin back. At around 9 weeks old, he started giggling and has now developed a pretty cute little laugh. Currently, his favorite things to laugh at are fake, exaggerated sneezes and Daddy's high-pitched helium voice. So if you see me in public, I do not, in fact, have a cold. I just have an adorable baby with heart-warming laugh that I need to hear all. day. long.

Levi's adjustment to Lucas has been realllllllllly slow, but he is getting better week by week! For the most part, Levi just ignores Lucas all together. Sometimes, Levi ignores Lucas so well that he doesn't even see him on the floor under his feet. Or on the bed as he rolls over him. Or in my lap as he smacks him with a book. Did I mention how resilient Lucas is? In all seriousness though, Levi truly has done amazing with Lucas. In the beginning, I really feared that he would feel threatened and might lash out at Lucas, but he never has and I couldn't be more thankful or proud.

Adjusting hasn't just been hard for Levi, but has been challenging for all of us! Between Mitch and I both working & being really involved in our church, life has been pretty crazy for the Jaeger clan lately. Not to mention, going back to work at 6 weeks postpartum was tough on this mama's heart (and milk supply!). However, the Lord has been so careful with my tender heart and has given me good bonding time when I feel like I need it most. He also has allowed me to finally establish my milk supply and continue to exclusively breastfeed, which is a huge answered prayer and completely the Lord's doing (I was ready to give up by my second week back to work!)

Life has been exhausting and wonderful,. Overwhelming, yet so rewarding. And we wouldn't have it any other way!

Levi: 2 Years

Two years. Twice as many years as last year. Twice as many grins, twice as many laughs, twice as many falls, twice as many tears. And, if it's even possible, twice as much love. Sweet Levi, the Lord has given us another year together and I am so immensely grateful.

I dreamed about you for a long time. Before I married your father, before I had even met your father, I imagined what you would one day be like. I imagined your precious smile, your sweet voice, and the joy in your laugh. I imagined your likes, your talents, and your future.

 You are not what I had imagined or hoped for.

You are so much more.

I always imagined your laugh would be contagious, but I never imagined how joyful and free it would be. I always imagined your smile would reach your eyes, but I could never have foreseen how deeply it would reach my heart.

I imagined your voice would be soft and sweet, but I never imagined that words would never need to be spoken to know the immensity of your love.

You are brave. So brave, sometimes, that I just have to close my eyes and not watch as your dad flings you {what seems like} 20 feet into the air. Your shouts of delight let me know you are okay and I often open my eyes again to see you frantically signing "more, more more!"

You are bold and outgoing. You love when people sing to you or shake your hand. You love when people enter into your world and play with you. Basically, you love being the center of attention {and I indulge you way more than I probably should.} However, the moment you are asked for hugs & kisses you suddenly pretend to be shy- bowing your head and putting on a cute little smirk as you oblige. You will break hearts one day with that little routine, and I will probably scold you for it. But for now, I will treasure it.

You are a lover of sleep and a proud new owner of your own queen size bed {until we have guests, that is}. A queen size bed seems a little ridiculous for a 28 pound little boy, but when you account for the glow sticks, your blanket, 2 body pillows, and your sleeping acrobat routine, it makes a little more sense.

You are a lover of pizza, chicken, bread, & french fries. Your doctor calls it the Autism food pyramid, which makes me laugh because it's SO TRUE. The health nut side of me wants to cringe, but you are healthy and thriving and that is good enough for me. {I also sneak veggies into your food, but you don't need to know that part.}

You are still a master of spinning Frisbees and often times have 4 going at once. If you don't have a Frisbee handy, you will spin Tupperware lids, bowls, or anything that is disc-shaped. You are extremely observant. You study each Frisbee as it spins; correcting mistakes if it doesn't spin long enough and finding just the right spot in front of the window so that light explodes off the walls around you.

You are a hoarder of glow sticks. Glow sticks in the bath tub, glow sticks in your bed, glow sticks with dinner, and glow sticks on the way to school. Over time, having served their purpose, the bright glow of your "sticks" begins to fade and they become dull and lifeless. But to you, they are just as beautiful. Even though they have nothing else to offer, you still treasure your "sticks" just as much because your love is neither selfish nor superficial. Your love is deep, whole and unassuming. Your love reminds my sinful heart daily that we are called to love even in the moments that the glow fades.

You are such a hard worker. Every sound, every sign, every point, and every daily task you work so incredibly hard to achieve. Even when you fail, you continue to try over and over and over again. Sometimes for hours, sometimes for days, sometimes for weeks, and sometimes for months. But when you finally achieve something, and you will achieve it, it is such a glorious moment that makes it all worth it. What a picture of perseverance you are, sweet boy.

You are animated, you are energetic, you are quizzical, and you are comical. You are passionate, you are determined, and you are incredibly stubborn. You are rough with your toys, but gentle in spirit. You are easily angered, but quick to forgive.

You are celebrated. You are prayed for. You are treasured. You are loved.

You are you;

More than I ever imagined and so much greater than I ever dreamed.