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.

Christopher "Lucas" Jaeger

Friday, July 24th, we welcomed our second sweet, little boy into the world and became a family of four! Over the past month, I have been reflecting on our last year and how wonderful that the Lord allowed us to bookend this past year with such a beautiful blessing. This year has been filled with miscarriages, specialists, therapists, and an Autism diagnosis. This year has been filled with walking with many, many friends through times of suffering. And, this year has been filled with deep suffering in our families. Although there have also been many, many wonderful times and blessings, this year has been one of the hardest years Mitch and I have encountered. BUT GOD did not allow it to end there. He graciously allowed us to bring gladness and rejoicing into this year through the birth of a sweet, wrinkly, healthy baby boy and we are so overjoyed and thankful.

Almost a week over my estimated due date, after the quickest labor and not even 4 pushes, Christopher "Lucas" Jaeger joined us at 4:32pm on July 24th. At 6 pounds, 13 ounces and 20.5 inches long, Lucas came into the world looking EXACTLY like his older brother & daddy (Apparently I only bring them into the world and that is where my contribution ends). Because of my Myasthenia Gravis, Levi's difficulties after birth, and the fact that sometimes babies can take on symptoms after birth (i.e. respiratory distress, etc.), the NICU team was present for the delivery and Lucas was immediately handed to them to be evaluated. Thankfully, he passed inspection with no problems and I was able to hold him a few minutes later. We are so thankful for how well the staff at Midtown Medical Center and especially Dr. Ted Thorne cared for and took precautions with Lucas and I!

Every single detail of our birth experience was so different this time! Since we were living in Mississippi when Levi was born, we had barely any friends and almost no family (except my selfless mother) around during his birth and the first few weeks. However, Lucas and I had constant visitors at the hospital and for weeks after his birth. I cannot even put into words how precious having our friends and family around was to Mitch and I!

In addition to having so much support, Lucas' clean bill of health was an incredible blessing! After Levi's rocky delivery and first month of life, we were fully prepared to walk the same path with Lucas. However, not only did Lucas have no Myasthenia symptoms, but he also was free of Jaundice AND he was able to eat on his own immediately after birth. The Lord is so gracious!

We came home late Sunday afternoon and introduced Levi to his new brother. It has been a slow adjustment, but overall Levi has done incredibly well with Lucas. Although he is not interested in him at all, Levi is slowly learning to be aware of where Lucas is and that he has to be gentle around him. We have had 2 or 3 hitting incidents, but we have had so many sweet moments between Levi and Lucas as well.

In the last month, Lucas has put on a whopping 3 pounds! Overall, he is an incredibly sweet baby who is a GREAT sleeper compared to his brother at his age. Since coming home from the hospital, Lucas only wakes once at night and then again around 6:00-6:30am. So if it looks like I am well rested, it is because I am! (For any mothers reading this and wanting to hate me right now, go back and read my blogs about the TERROR that Levi was as an infant and you might not hate me as much!)

Sweet Lucas we are so thankful that the Lord gave you to us according to His timing and not our own! You have truly been a cool spring in the middle of (what seems like) an unending desert.

On Autism and Being Blessed

Autism.

We have had a slight idea in the backs of our minds that this was a possibility. But alas, Satan is so good at convincing us that we are invincible and that our "perfect little worlds" are untouchable. So, when the diagnosis of Autism came out of the doctor's mouth, my world stopped and my mind exploded with a million thoughts, questions, and accusations.

How did this happen? I took my prenatal vitamins, Levi has never been involved in any kind of trauma, and gosh-darn-it we are good parents! I can't handle this. I have no experience with Autism. What is Autism? Is it genetic? Wait, what about Lucas?!

And then, the accusations started rolling.

God where were you? How did you let this happen? Why would you do this to a child? Why would you do this to ME?

The past week has been so full and so heavy. Mitch and I have grieved the loss of our "perfect little world". We have grieved for Levi and for the fact that things will not be as easy for him as we had hoped/expected. We have grieved over our pathetically sinful hearts and our immature reactions to this.

Because there are so many unknowns right now, Satan has taken full advantage of my mother's heart and has assailed me with fears of the "what ifs."

What if Levi never speaks? What if Lucas also has Autism? What if Lucas doesn't have Autism and he always resents Levi? What if Levi ends up being the "weird" cousin/brother/classmate that nobody wants to be friends with? What if I cannot give Levi all that he will need? 

And the list goes on, and on. And on.

 However, just in the past week, I have already seen such a change in my heart as the Lord is moving me towards acceptance and joy. There are so many unknowns with Autism, true. But, there are so many more KNOWN things with the Lord.

"Call to me and I will answer you, and will tell you great and hidden things that you have not known" (Jeremiah 33:3)

I do not know what Levi's development and progress will look like. I do not know where he falls on the "spectrum" as of now. I DO know that Autism makes up part of who Levi is and his "Autistic characteristics" are some of the things we find the most endearing about him. I DO know that our love for him will never change. Levi is a sweet, funny, affectionate, normal little boy in an abnormal world.

I do not know if Levi will ever talk. I do not know if he will ever say "mama" or "I love you."  I DO know that audible words are not necessary for one to know love or for one to have a relationship with God.

I do not know if Levi will develop epilepsy, or other conditions that Autistic children are more prone too. I DO know that the Lord has blessed us IMMENSLY with Dr. Steinwachs, Dr. Rubin, and all of the staff/therapists at Easter Seals who are taking care of Levi so well and will continue to do so.

I do not know if Levi will get better or get worse as he gets older. I DO know that the Lord will give us strength for anything that comes in the future. ("Fear not, for I am with you;  be not dismayed, for I am your God; I will strengthen you, I will help you,  I will uphold you with my righteous right hand. Isaiah 41:10)

I do not know how in the world we are going to handle a newborn being thrown into all of this in about two weeks. I do not know if Lucas will also have Autism. I DO know that the Lord has blessed us by surrounding us with friends and family who are loving and serving us so well. I DO know that while it might be overwhelming, the Lord will give us the ability and the strength to live joyfully. ("I can do all things through Him who strengthens me." Philippians 4:13)

I do not know how many times I will fail to love Levi the way he needs to be loved. I do not know how many times I will lose my patience. I do not know how many times I will be heartbroken because I cannot protect Levi from the way other people might treat him.  I do not know how many days I will live crippled by fear. I do not know how many times my sinful heart will wish things were different. 

I DO know that God's grace is sufficient. I DO know that God's power is made perfect in my weaknesses (2 Corinthians 12:9). I DO know that the Lord loves Levi more than I ever could and the Lord can protect Levi better than I ever could dream. 

And in these truths and promises, we are resting. In these abundant blessings, we are going to chose to be joyful. 

Levi has Autism and we are so blessed.