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.

Great Expectations

After being apart for 2 weeks, the longest time span Levi and I have been apart, I couldn't wait to pick him and Mitch up at the airport this week. I stood at the top of the escalators at the Atlanta airport waiting to catch a glimpse of the man wearing a baseball cap and a baby (because I know my husband well enough to know he would be wearing a hat). As soon as I spotted them, Levi got a huge smile on his face, ran to me, and said "Mama!" for the very first time. It was one of the greatest moments in my life.

It also never happened.

This is what I had imagined my "welcome home" greeting with Levi was going to be like. I imagined it and I would say a small part of me, in the depths of my heart, expected it. Because I am his mother and he should've missed me. Because I am his mother and I deserved a greeting like that. Because my son is almost two and he should be able to say "mama". 

Instead our airport "greeting" consisted of this: Levi not knowing/pretending to not know who I even was, staring at me like I was a stranger, crying when Mitch forced him to go into my arms, and fighting me to try and get out of my arms and back to Mitch. Hurt would be an understatement to how I felt standing there in the airport and for the past day as Levi has slowly been working on warming back up to me. 

However, as in most times of hurt, the Lord has been faithful in showing me the true source and reason for my pain and disappointment: Myself. Levi himself and his actions did not hurt me, his failure to live up to my (deep-down and hidden) expectations of him did. Expectations that I never had the right to place on my son in the first place. As this has been revealed to me, I have realized that almost 100 percent of the times that I have been most upset about Levi's development have been when the expectations I had for him, hidden in the darkest corners of my heart, were not met. As Mitch and I excitedly awaited Levi's arrival this time 2 years ago, we did not imagine him going to specialists and therapists. We did not imagine him getting passed by his peers and even by kids a year younger than him in development. What parent does?

Instead, I imagined him as smarter, faster, and more advanced than his peers. And, deep down, what was the true motivation behind wanting my son to be the best? Because it meant I was the best. My son being smart, advanced and well behaved meant I was a great mother. Pretty disgusting, right?

But, I am ashamed and humbled to admit, THAT is the dark corner of my heart that my expectations come from. Expectations that are unrealistic, unfair, and deeply prideful. Expectations that poison my relationship with my son, my relationship with my husband, and ultimately my relationship with God. How often do I find myself asking God "Why are you letting this happen?" or "How long until you fix ________?" Or, "Why does Jane Doe have this or that when I am going through this?" (I would need a whole other blog post to cover the deep core sins that this question comes from.) And laying at the heart of all of these questions is the same thing: expectations I have placed on God that have not met my approval. 

Proverbs 11:23 says "The desire of the righteous ends only in good; the expectation of the wicked in wrath." My expectations are ending in hurt, in anger, in disappointment, and ultimately in broken relationships with the ones I love most. My expectations have caused me to be disappointed in my son. And, I cannot stand to even admit much less write out that I have felt this, but my expectations have cause me to at times be embarrassed about Levi's development (literally the worst thing I have ever had to write.) My expectations have caused me to question the Lord, to accuse him, and to belittle His sovereignty and holiness. 

BUT GOD, who is more gracious and merciful than I could ever fathom, has chosen to love me through this time and in spite of these awful thoughts and feelings. Praise the Lord.

Praise the Lord that he knows the depths of my heart and loves me the same. Praise the Lord that His plan is so much bigger than mine. Praise the Lord that He loves Levi & Mitch so much better than I will ever be able to. And praise the Lord for granting me a renewed heart and mindset on Levi's sweet, beautiful, and right-on-track development & personality. 

Levi: 21 Months

As much as I hate still referring to Levi's age in months, "Levi: Almost 2" as a blog title sounded even worse. Not to mention, he really won't be 21 months until June 10th (which means I am AHEAD on my blog posts for once!)

Easter 2015

First day of school/Last day of school

Although the last few months have had some really challenging moments, the wonderful moments have far, far outweighed the hard ones. Levi's personality continues to surprise us and make us laugh. Although he has regressed in all verbal communication, he has started to show signs of understanding certain words and phrases that we use daily such as "Dance, Levi!", "Give kisses", and "Are you ready to go night-night?" In hindsight, maybe we should spend more time on practical commands but he just looks so darn cute when he "dances".

Last week, Levi and I spent the week in Destin with most of my side of the family (Mitch had to stay back and give finals.) During that week, my older brother Josh was able to teach Levi to "fist bump" and to shake his hand when Josh said "Put 'er there". This was HUGE. A.) Because Levi was associating words with certain actions, and B.) because he responded to someone who was not Mitch or I.

In the last few months, Levi has made some great strides in his social skills as well! For the longest time, he wouldn't even respond to anyone who was not Mitch or I and he pretended like most kids his age and adults did not exist. However, he has started watching and playing with his cousins a little bit more and has been interacting with his aunts and uncles a lot more as well! He also continues to steal his cousins' food, but that is a lesson to be learned another day.

Levi laughs all of the time and mostly during rough play or being "scared". He loves wrestling with Mitch or being hit in the face with pillows (seriously, it's his favorite game). He also loves loud noises and suspense games. His new favorite toys are two Frisbees that were given to us at a restaurant in Destin in March. He will spin the Frisbee for HOURS. His favorite thing is to get both Frisbees spinning at the same time. It's really quite impressive. When we are outside of the house (in the car, running errands, at daycare, etc), his favorite toy is his "MP3 player" with his strap attached to it (the strap is just as important as the toy we have discovered!) The toy has buttons that will play music and he constantly presses the buttons while we are out because it soothes him. One day he is going to look through all the pictures that we have of him from this time and will wonder why he has a toy with a ratty old strap attached to it in EVERY picture. But it works and he loves it. Therefore, we love it.

My Cousin & my MP3 player, what more could a boy need!

In the last few weeks, Levi has also become very attached to blankets. However, since he does not have a "blankie", he insists on carrying around our full size fleece blankets (which is hysterical). He also insists on having ALL of the blankets. I cannot even count how many times Levi stole his Aunt Laura's blanket from her at the beach last week but it was just too funny to stop him. I am thinking purchasing Levi his own blanket is in our future!

Although we still have not heard any words yet, Levi is slowly beginning to communicate in his own way and it has been such a joy to be able to sometimes understand what he is wanting or feeling! So until the words and talking come, this mama is completely content to continue with the hugs, kisses, and happy arm flapping!

Levi Development Update: April 2015

At Levi's 15 month check-up, our pediatrician referred us to a speech and physical therapist and agreed to let us see how therapy alone would work before we pursued other tests/doctors. However, after 3 months of therapy, we reconvened in March for Levi's 18 month appointment and he was even further behind. Because of this, Dr. S (who has been amazing and has treated Levi and us with so much grace and compassion), had what I like to call "the hard conversation."  And out of that hard conversation, came our "game plan" for the next couple of months as we strive to do everything we can to give Levi the best chance in all things.

Isn't he the cutest?

Levi has been currently diagnosed with PDD, or Pervasive Developmental Disorder. I say currently, because this diagnoses could change as we run more tests, and as Levi gets older. However, according to his symptoms and behaviors now, it is the diagnoses that fits.

Levi saw an audiologist a few weeks ago and passed his second hearing test, so we can officially rule out hearing loss or deafness, praise the Lord! We have an upcoming appointment with a Developmental Pediatric Specialist in Atlanta in June. We have been told to allot 4-5 hours for our initial appointment with Dr. Rubin (I choked on my coffee when the nurse told me that nugget of information- "you know he's 18 months right?") Although I am already struggling with anxiety because of the length of that appointment, I think that we are going to be able to learn so much from it about what is going on with Levi. So as strange as it is to say, I am excited for that appointment!

Fun at the park!

We are still annoyingly patiently trying to get an appointment with a Pediatric Neurologist. Because insurance is SO MESSED UP finicky right now, the only Pediatric Neurologist that will accept our insurance is in Augusta, Georgia, and they do not have an open appointment until mid August for out of area patients. However, because we don't want to wait that long and because Augusta is about a 4.5 hour drive from Columbus, we are currently in the process of applying for a "prior approval" with our insurance that would enable us to go to a doctor closer to town. We have a pediatric neurologist in town who has an appointment ready for us, so please pray that insurance will allow us to go to him!

While we wait for upcoming appointments and insurance approvals, we have been directed towards an organization called Easter Seals ( http://www.easterseals.com/who-we-are/history/ ). I had a tour/interview a few weeks ago and we have decided to start Levi there full time in August. He will be a part of their child development center and will also be doing his therapy there full time as well.  He will "checked-out" of class several times a week for one-on-one therapy and he will also have daily therapy goals that his teacher will work on with him through out the day. We have heard such high praise of Easter Seals' programs and therapists and we are very hopeful and excited to see how Levi progresses while he is there.

As far as Levi's development, skills and behavior, he is officially walking about 85% of the time!! He will still crawl some, but it is normally when he is playing with his ball or his Frisbee (I swear I have a child and not a dog). For the most part, his attitude and temperament have improved drastically since he has begun walking. He still gets very frustrated when we don't understand what he wants (which is most of the time) but who can blame him? All in all, he is a joyful, sweet, energetic little boy and he has been a champ through all of this!

Levi has regressed in almost all of the speech he had developed. A while back, I had blogged about him saying "dog" and "dada", but that has almost completely stopped now. The only communication that he has held onto is waving bye-bye and he is so proud of himself (as are we) every time he waves. It is absolutely precious! He also continues to sign "please" with our hands (not his own) for anything he wants. We do not even have to prompt him anymore, which is a big step!

Happy as a clam

We aren't really sure why he is regressing, but we are hopeful that his upcoming Neurology appointment and Pediatric Development appointment in Atlanta will really shine a light on whats going on and what we can do to help. We greatly appreciate all of those who are praying and loving on us and Levi! And we are so incredibly thankful for the gift that is Levi himself, we truly wouldn't change a thing!

Levi: 18 months

             "For you formed {Levi's} inward parts; you knitted {him} together in {my} womb. I praise you, for {he is} fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. {His} frame was not hidden from you, when {he} was being made in secret, intricately woven in the depths of the earth. Your eyes saw {his} unformed substance; in your book were written, every one of them, the days that were formed for {him}, when as yet there was none of them." {adapted from Psalm 139}

I never thought I would be writing Levi's 18 month post and shouting from the rooftops "HE'S WALKING!", but that is exactly what we have been doing the past two weeks! To everyone we know. And even random people at the grocery store that I do not know (sorry bag boy). We have celebrated A LOT in the last two weeks and so many wonderful people have celebrated with us.

Although there have been SO many difficult things that have come along with this journey we are walking through with Levi's development etc., one of the sweetest blessings that has come with it has been treasuring every, single little new thing that he does. He works so hard for new skills and sounds and every one has become grounds for HUGE celebration in our house. It has made us so thankful that God is using this season to teach us how precious every single detail is. So we will celebrate hearing a sound (any sound) that is not "d". And we will celebrate when Levi grabs a shoe and places it in the vicinity of his foot. And when Levi learns to "give kisses", after I have spent MONTHS trying to teach him this skill (so superficial and quite selfish on my part, but give a mom a break! I will only get kisses from my son for so long), I will freak out so bad that Mitch and Levi will be a little concerned about my state of mind.

This past month has brought about so many of these new skills! Levi is now officially walking about 50% of the time and has also learned to stand up in the middle of the room by himself. He also has learned to "give kisses", wave "bye-bye", and put together a puzzle (or close enough). He still has not adapted well to using sign-language, but he has started making a few more "singing" noises where he will change the octave of his voice. We have not heard any new words or letters yet, but hopefully one of these days he will just bust out in some "bees" and *fingers crossed* "mmmms" (I may or may try and teach him "MAMA" a billion times a day)

All in all, these last few months have been so precious for us as a family. After getting his initial evaluation back at the beginning of the year, our home was anxious, sad, and dejected. However, over the last few months, the Lord has truly transformed our house into a place of hope and joy. In addition, Levi's tantrums have become more subdued and less frequent and I think he is starting to feel a more joyful himself! However, I am not sure how joyful Levi will be come July when we welcome his little brother Lucas into the picture. (That's right, we are pregnant with baby boy #2 due in mid July!!)

Levi continues to love all types of bouncy balls & has just recently become interested in puzzles. He also has a new love/unhealthy obsession with brushing his teeth and we suffer quiet a large meltdown when we are all done brushing and have to put the toothbrush away. Levi is growing into such a sweet, cuddly-yet independent, funny little boy! His personality catches us off guard and he makes us laugh so much with his funny facial expressions and random bursts of sound and laughter. Levi is exactly how God meant him, and (thanks to a lot of prayer, grace, and hard truth) we wouldn't have it any other way.

Therapy, Tantrums, and a Cat Called Dog

We have officially been in therapy for a little over a month now and it is slowly becoming part of our daily routine. Although it makes every task a whole lot slower, almost everything we do through out the day can be a teaching exercise to help develop Levi's communication. Right now, the main thing we are working on with Levi is teaching him to communicate through signing. We are also working painfully joyfully on teaching him that we no longer respond to crying as a form of communication. (Obviously, if he is scared, hurt, etc. we respond!) This has brought about some pretty big tantrums, but it is so important for Levi to learn that toddlers communicate with their words and not their screams. 

Exhibit A: Communicating with our cries

 Since being in therapy, Levi has had some slow but promising progress! He is picking up on some signing, although he still refuses to sign himself. Instead, he will grab my hands and sign with them. It's reallllllly pretty cute, but I try and stay strong and make him sign himself. He has had a few moments where he has hinted that he might even understand a few of the signs enough to communicate with them. In addition to this, Levi has said his first word. Oh how I wish that I could tell you it was MaMa or DaDa. But alas, the single word Levi has chosen to learn is "Dog". And he uses it in reference to my parent's cat. But we will take it! 

We got the results from Levi's evaluation & communication test a couple weeks ago and it was one of the hardest things I have ever had to read. No one wants to hear that their child is not perfect. No one wants to hear that their child is further behind that they originally thought. And no one EVER wants to hear the words "severe deficit" and "half his age" in reference to their child's development. But, sadly, we did hear those things. And we cried, and sulked, and shook our fists, and had a good long day of hating everyone on Instagram who was posting photos of their perfectly developing child (okay the last one was just me). Thankfully, the Lord meets us wherever we are, and He met us in those moments and continues to meet us in the those moments every day. Because let's be real, I still have many moments of jealousy and hatred every week ever day. But if those that are single can rejoice with those who are getting married, and if those who are longing for a child and are without can rejoice with those expecting, then you better believe that I (after confessing the thoughts of my prideful and jealous heart) can and should rejoice and celebrate the lives and accomplishments of my friend's children. 

"Sit down? I don't understand that sign"

To summarize Levi's evaluation, he is 16 months old and measuring at an 8 month old communication level. This places him in 2-3 percentile of where his peers are (so he is not alone!) His hearing tests have come back normal, so as of right now we do not have an explanation for his communication delays. We most likely will be doing blood work and potentially brain scans in the following months to rule out a few disorders and conditions that can cause speech disorders. In the meantime, we will be seeing a speech therapist 2-3 times a week for the next six months. At the end of the six months, he will be retested and reevaluated. 

We are praying and hoping with pried open hands that Levi will not test positive for any disorders or brian damage and that he will make huge strides in his therapy over the next 6 months. We are also praying for positive outlooks and thankful hearts. And we are daily thankful and grateful for the sweet, cuddly, hyper-active, little boy we have been blessed and entrusted with. 

Levi 15 Months

The last few months have been filled with so many changes for our sweet, little boy! For starters, after his first haircut, Levi officially looks more like a toddler than a baby. And wouldn't you know it, the only way that we are able to get his haircut is if we play the Frozen "Let it Go" video for him on repeat! Almost a year later and he still LOVES that song.

 The last few months have come with many new firsts for Levi as well. We took Levi (and his cousins) to a pumpkin patch for the first time and he loved crawling around all of the pumpkins. At the end of October, he also got to attend his first "Trunk or Treat" at our church! Mitch & I's small group did a "Despicable Me" theme  and Levi made the cutest little Minion (but I guess I'm biased). October was a very full month but Levi loved every bit of it!

Levi has a new tooth pretty much any time I look! He also LOVES food and will eat almost anything that you put in front of him. He also will eat things you do not put in front of him but put in front of his cousins. We have had many-a-cousin-meltdowns because "Wevi took my chicken!" and many apologies from Mitch and myself on Levi's behalf. So if you ever go out to eat with the Jaeger family and you are stuck next to Levi, guard your plates!

In addition to new events, Levi also stood alone for the first time last week! This was a HUGE thing for him. Levi also started holding his own cup/bottle in the last month as well. Both of these small steps forward have really encouraged us about his development. As I mentioned in his last monthly update, Levi's pediatrician has been monitoring his delays since this summer. At his 12 month check-up, we decided to observe him over the next month and reevaluate after that. In November, we re-met with his doctor who encouraged us to have some tests done and to have Levi start visiting a physical and speech therapists for his delays.

Meeting Levi's newest cousin Wesley

All of this has sadly brought out so much sin in my heart! My pride burned the first day that our doctor suggested something might be wrong with my child. My pride was bruised when I watched other kids Levi's age far surpass him in development. I am ashamed to say that I have had feelings of embarrassment. Not embarrassed about Levi himself, but embarrassed because I sometimes feel that Levi's delays could have been caused because I have not been a good enough parent. All of these feelings, and many, many more dark thoughts that lie in my sinful heart, are all proof of the vanity and pride that lives in me. So while we are not sure why or what has caused these things to happen, I am confident that the Lord was not surprised in the least that these sins laid waiting within me. And I am also confident that the Lord is using this time to sanctify my heart.

Happy Howl-a-ween

These are just a few of the recommended "warning signs" that suggest a possible delay and/or hearing problem in a 15 month old (and that we have seen in Levi):

                 -Does not respond to his name
                 -Does not use any words (such as Mama, Dada, or Bye-bye)
                 -Does not understand words or commands (come here, or are you all done?)
                 -Does not use gestures or pointing to show things he wants or needs
                 -Does not point to objects that you name (where is the dog? or where is mama?)
                 -Does not mimic sounds or gestures
                 -Does not walk by 15 months

After some consideration and prayer, Mitch and I decided to hold off on visiting a neurologist until after he had been evaluated by the pediatric therapists. With the start of the new year, Levi will be doing speech and physical therapy in hopes diminish his delays all together. Although his process has been scary and uncertain, Mitch and I are very encouraged by Levi's forward progress and are thankful that he has yet to regress in anything so far (which is a huge answered prayer!). We are also very thankful that Levi's personality has not been effected by his delays so far and he is an absolutely joy to be around (about 90% of the time- no baby can be perfect!) The Lord has been so faithful to us in this journey and we know that his faithfulness and goodness do NOT change; and in that promise we are resting!