About Our Soren Lind

"Your son has Autism."

I sat in a small room for an hour going over page after page of Soren's diagnostic results. The words were not a surprise. We had been anticipating his diagnoses for 12 months since his second birthday. But it finally became real and it became part of our story.

My last post about our sweet boy went in depth regarding his speech delays. At the time I was writing that post we were aware that there was likely more to it than just a speech delay but we were playing the common waiting game of appointments, assessments and follow ups.

At year two Jon and I knew he was delayed in his speech. We didn't know why at the time...we mostly thought that is was because he was 1. the oldest and 2. a boy...sometimes common reasons for a speech delay. Our pediatrician (who is pretty great!) recommend we pursue Babies Can't Wait which is an early intervention program that provides speech therapy and other incredible services for babies under three. We started with a speech therapist. Mary came to our house weekly to work with Soren. Soren definitely struggled through these sessions but now and then he would respond and engage which always brought huge smiles to our faces! We started seeing more and more red flags pop up in his development over 2016...his speech didn't seem to improve, he seemed to crave sensory input, he didn't prefer playing with kids and very often focused in on his own activities. Around August we put him in a 3 day preschool. We hoped it would encourage his development and speech to be around other kiddos, however, Soren desperately struggled. He had a difficult time participating in the day and often experienced melt-downs. I remember attending a few parent-teacher meetings where the teachers expressed their concerns with Soren. At that point we were still learning more and more about Soren so I just didn't have answers for them. I wanted nothing more than to understand what he needed and what we could do for him as a family and our experience with his preschool propelled that desire and passion forward.

I began researching and reading and asking questions and doing everything I could to learn about our buddy. I especially loved reading "The Out-of-Sync Child" that really dives deep into Sensory Processing Disorder. We had somewhat landed on the thought that he might have Apraxia of speech and SPD (sensory processing disorder). This gave us a starting ground to discover more about how we could parent and teach Soren. The book especially provided SO much context and resources that we started feeling like we were getting answers.

Not too long after we started Soren into preschool we unfortunately had to pull him out. The teachers, as lovely as they were, just weren't equipped and confident in working with Soren. I remember his last day, I sat in the car and just cried for him after I dropped him off. I knew he enjoyed his time there but I could also see the deep struggle and the need for something more. Picking him up was the hardest. His sweet teacher fought back tears. I did too, but did everything I could to hold it in.

I realized that day that I needed to grieve the fact that Soren wouldn't be "normal" so I could truly celebrate that he would be special, and unique and brave and see the world with such an incredible mind.

While we were waiting for appointments to line up with the school system and with a pediatric psychologist for an official diagnoses, we started the process of finding him a new speech therapist and an occupational therapist. Thankfully we found a recommended therapy service close to us with amazing therapists that Soren just loves. He's been going to OT there for a handful of months and just recently started his new speech services there too.

In December and January we went through many assessments to get him a diagnoses around his three year mark. Part of me felt a deep sense of urgency to get him on track with the therapies he needed and another part of me had to remind myself that we are doing good, we are taking the right steps and we just need to be patient and proactive.

For both of the separate assessment days (one through the county school system and one through a pediatric psychologist) I found myself so emotional. I remember the first day of his pediatric assessment the psychologist stopped, looked me in the eye and asked me, "how are you doing?" I stopped, tears welling up in my eyes and I told her that this means everything, we've been waiting all year to get answers and we are finally on the cusp of knowing. She told me that day before the final testing that she believed his speech delay and his sensory seeking was a symptom of autism. This was the first time that word was confirmed and it changed everything for us. She set up a time to do the final testing but suggested we prioritize speech, OT and seek out ABA (Behavioral Therapy) services for Soren. I was proud to know we were already on the right track.

So here we are in March of 2017. Since my initial meeting with the doctor, Soren has officially been diagnosed with Autism by both the county school system diagnostics and our pediatric psychologist. We are still working through the insurance and paperwork process of getting Soren into ABA but we should be starting those therapy services within the next week or so! While speech and OT are outside of the home a few hours a week, ABA is inside the home for several hours each week (15-25!)...they will work with Soren 1:1 and with us on things like sitting at the table, playing with others, potty training (yes!), social skills, speech...I can hardly wait to get started and at the same time I'm intensely praying for a therapist that fits within our family well and that Soren loves, especially since this person will essential become part of our family!

We really felt strongly about early intervention with Soren and pursuing therapy services. Everything I've read has said over and over again how valuable early intervention is for children with autism.

So, where are we emotionally? Jon and I feel passionate about the fact that Soren was meant for us and we were meant for him. Soren is Soren no matter his diagnoses. We celebrate his diagnoses because it empowers us to know how we can help Soren thrive! All we want is for Soren to be his best self, we want him to experience everything life has to offer and to never feel held back by Autism, instead we want him to view Autism as a beautiful part of him...something that makes him incredible and wonderful!

The hardest part? There is a huge difference between a tantrum and a melt-down. I like to compare an autistic melt-down to something like a panic attack. It's triggered by one or a series of things that sends him off into an emotional breakdown. During these times it's hard to console him, it's hard for him to communicate with us and our hearts break so much for his agony. Not too long ago Soren had a meltdown that lasted nearly 1.5 hours. Jon sat outside with him...stroking his hair, holding him and speaking truth to him while he cried and cried. I fell into the arms of my friend that day because I was so overcome by Soren's sadness and for not being able to understand him.

Most of the time he's so creative in expressing his needs, he uses constant jargon to tell us stories and lots of actions to communicate what he wants...but in those moments he tends to loose that ability and we're left with him so frustrated and sad that he can't make us understand what he needs and what he's saying. All we can do during those moments is hold him and love him and be there. These are the moments that are the "stuff of parents"...being a rock and a haven for your babies, letting them feel your love and know your love in the hard times is sometimes all you can do and usually just what they need.

I think when I hear him say "I love you, Mommy" for the first time I'll melt 1,000 times. The doctor predicts that he'll be talking between 4-5 and we await with joy for that time. For now, we are celebrating the little things, Soren has taught us THAT more than anything. We celebrate when he says a word, we celebrate when he listens and when he is teachable, we celebrate him learning independent tasks, we secretly video tape the moments he interacts and plays with his sister, the giggles are so contagious! :) He has challenged us to be present in our parenting and to see beauty in simple moments. For that I will be forever thankful to him.

Even though he's not saying "I love you"...we feel it in every hug and in every little kiss and in every cheesy smile that he gives us. :)

Soren is a brilliant boy. He brings an incredible amount of joy to our lives constantly. I envy his energy and passion. The laughter, fun and joy that he has managed to bring to our family was everything we needed and everything we prayed for. We adore watching him get excited about his favorite show, Curious George, or dance around to music in the kitchen after dinner. He ADORES being outside and going to the park. His eyes literally sparkle and are filled with so much wonder. (I can't wait until we can put him into something like Cub Scouts or Boy Scouts! I think he would LOVE it!) He is affectionate and saves lots of kisses for his mommy...Jon and Soren have such a special relationship too, I can already tell that Soren looks up to Jon in everyway and is happier when he gets time with his daddy. He's great at puzzles, loves to color and is SO silly! We are SO proud of our boy and we love him with a crazy, fierce and big kind of love. As parents of Soren we feel so much honor in doing right for him and at the same time we hope with everything we are that we can continue to grow into great parents for him and for our little Aria.

This road is new for us but we are ready and hopeful. We have an incredible community of family and friends that shower love on us constantly and help us with SO MUCH. We anticipate these next few years as Soren understands more and more and is unable to communicate as much as he would like to be the most difficult BUT we are praying and hoping and excited for him to continue hitting milestones and growing. We know that there is a lot ahead for Soren but we also know that he is capable and smart and kind and incredibly gifted. My prayer is that we, as his parents, can really foster those strengths in Soren throughout his life.

I recently finished a book called Daring Greatly by Brené Brown and at the end of the book was a beautiful parenting manifesto that resonated so much with my heart and what Jon and I hope to cultivate in our home with Soren and Aria.

I would love for you to read it...

Above all else, I want you to know that you are loved and lovable. You will learn this from my words and actions - the lessons on love are in how I treat you and how I treat myself.

I want you to engage with the world from a place of worthiness. You will learn that you are worth of love, belonging and joy every time you see me practice self-compassion and embrace my own imperfections.

We will practice courage in our family by showing up, letting ourselves be seen, and honoring vulnerability. We will share our stories of struggle and strength. There will always be room in our home for both.

We will teach you compassion by practicing compassion with ourselves first; then with each other. We will set and respect boundaries, we will honor hard work, hope and perseverance. Rest and play will be family values, as well as family practices.

You will learn accountability and respect by watching me make mistakes and make amends, and by watching how I ask for what I need and talk about how I feel.

I want you to know joy, so together we will practice gratitude.

I want you to feel joy, so together we will learn how to be vulnerable.

When uncertainty and scarcity visit, you will be able to draw from the spirit that is part of our everyday life.

Together we will cry and face fear and grief. I will want to take away your pain, but instead I will sit with you and teach you how to feel it.

We will laugh and sing and dance and create. We will always have permission to be ourselves with each other. No matter what, you will always belong here.

As you begin your Wholehearted journey, the greatest gift that I can give to you is to live and love with my whole heart and to dare greatly.

I will not teach or love or show you anything perfectly, but I will let you see me, and I will always hold sacred the gift of seeing you. Truly, deeply seeing you.
— Brene Brown - Daring Greatly

Before I wrap up this novel of a post, I wanted to personally thank all of you for your incredible support and encouragement. When I wrote my first post about Soren I was able to connect with so many of you and hear your stories about your own children, grandchildren, friends and siblings. It means everything to me and it's such an encouragement to feel a tribe of people along side my family, to resonate with your stories and know that we are in this together.

So THANK YOU from the very bottom of my heart and on behalf of my entire family. It is a pleasure to share our lives with you.

With love, Sav.

During the month of April we will be recognizing Autism Awareness month. On April 30th we will be walking with friends and family in honor of Soren for the Autism Speaks walk in Atlanta. We are hoping to raise $1,000 as a team to generate funds that fuel innovative research and continued support and services for Autism. To learn more about how you can participate, hop on over to our team page here. Also, as many of you know I run a candle business called Lindbergh Candle Co. we donate 10% of our proceeds to St. Jude but during the month of April we will be donating 10% of our proceeds to Autism Speaks. xox

Post Credits: Photographs by Natalie of Four Corners Photography during our Star Wars PJ session near Christmastime. :)

The Boy Who Won't Say Mama

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It started in January 2016. Our boy turned two years old. Intelligent, strong, full of energy and those baby blues that look like the sea killed me EVERY time. So much wonder behind his eyes and SO much love for his family and life and playing. My once small baby, born when the snow fell in Georgia, was now two. So much ahead of him and so much we looked forward to. 

I remember when I was pregnant with Soren. I prayed for a boy with energy and joy. I knew that's who he was and seeing that's who he IS gives me nothing but joy everyday. He is everything I knew he would be even when he was just a small thing growing inside of me.

Soren was always quick on his feet. Mastered motor-skills both fine and gross well before other little ones his age. He has also always been very aware of himself and his placement in space. It's rare to see him fall or trip. Along with this, Soren also became my "runner"...strollers have been a personal lifesaver for me with my little explorer.

When he was a baby we worked on all of the basic words, "da-da" "ba-ba" (bottle) "ma-ma"...for a short phase in his life he said "ba-ba" every night. Matter of fact, I believe it was his first word. During bath time he would stand up and proclaim, "ba-ba!"...he looked forward to this moment all day. Cuddles, songs and his beloved ba-ba.

I remember his two year check-up. Jon and I had already had conversations about our concerns with his speech. He didn't say much. His words were inconsistent, rare and mostly consisted of, "uh-oh" "done" "da" and the occasional attempt at the word "juice". ;) We knew at this age we might expect a handful of more words and maybe a few two-word sentences. But his words were hardly there, I could count them on one hand. My heart started beating fast as I realized the concern on the doctors face. She asked me a series of questions and I remember my fears being affirmed and at the same time deepened. The process was set forward to begin early intervention. We started with hearing screenings, a brief surgery to get tubes put into his ears and started Soren into speech therapy. Between weekly speech sessions, Jon and I worked on signing, flashcards, pointing out objects to get him to mimic us, we lived for the receptive moments. The times when we was open and receptive to learning and hearing were rare.

We were told over and over again by ourselves and others:
"He's a boy, they always take longer."
"First born children tend to take longer to speak."
"Just you wait, one day he'll wake up and start talking!"
"He probably CAN talk but just doesn't want to."
"As soon as he starts talking, you won't be able to keep him quiet!"
and our personal favorite...
"Einstein didn't talk until he was four!"

We hoped preschool would be a turning point for Soren. It was something we worked towards and we put a lot of hope in...a time to be around little ones his age a few times a week. We hoped it would propel him forward and inspire him to see other kids his age talking and communicating. However, preschool proved to only be a point of stress, anxiety and frustration for Soren. He didn't hate going but he had an extraordinarily hard time doing what the other kids were doing.

Seeing Soren attend preschool for a few short months made us realize there might be something even more to this then we originally thought. More red flags, more worries and more unanswered questions.

I was called into several parent-teacher meetings about how they could best work with Soren and practices we have at home that could translate heart was so heavy. I hated the day I had to pull him out, I held back tears and watched his teacher do the same. It was heartbreaking. We wanted so much for it to be great for him, but our sweet boy needed more, more than preschool could give him and more than we were giving him.

Our journey with doctors, pediatric psychologists, occupational therapists, books, resources, conversations, phone calls, appointments, began. At this point we knew it was beyond a speech delay, we could feel it in our heart and see it in Soren. Our mission became to find answers so we could give Soren the tools he needed to thrive and be himself.

As Soren began realizing more and more about the world around him, I could read a fascination in his eyes and an incredible intelligence. At the same time, Jon and I watched as he grew with age he grew in frustration.

We knew he so badly wanted to communicate with us; tell us his thoughts, desires, feelings...tell us he loves us. What I would GIVE a thousand times to hear those three words.

Meltdowns became more frequent as he approached three.

Soren, however, has always been very clever and found many ways to communicate with us to the best of his ability. We would grab us by the hand and lead us around the house to show us what he wanted to play with, eat, watch or do. And even though Soren couldn't say anything, he SAID so much. He loves pulling us down to eye level and going off on 15 minutes rants in his own language. He has SO much to say, so many hand gestures, facial expressions, movements. Usually we can't help but sit and smile at him during these times. We dream of the day when we can get insight into that little mind and hear his stories. Although his words are few, even now he communicates and speaks in his our language constantly. His mind is going 24/7. I love watching him work. He loves puzzles and coloring the most. He can put together a magnetic map of the United States perfectly without help. I could never dream of doing that at his age!

At just over a month out from his third birthday, our little Soren still only speaks a few understandable words. Every now and then he'll actually surprise us with a new word, but I think he's just teasing us because 9 times out of 10 he won't repeat the word or phrase again. ;)

Since our first moments realizing something was different we've learned SO much and encountered so many amazing people and programs that are all working to help our Soren. We are currently in the process of learning a lot more about Soren and we look forward to continuing to share that journey with you as we gain more knowledge.

Jon and I wanted to share this story with you because we wanted to celebrate Soren. To us, no matter the diagnoses, no matter the journey, Soren is who God created him to be. I don't want a different Soren, we just want to give him everything he needs to thrive and be the best Soren he can be. I remember when I first feared the worst, I sat at our table in the kitchen and wept. I feared for his future, for his relationships...but now I sit here in freedom, grace and incredible peace. Knowing more about him is empowering. Knowing how we can help him and educate him is worth more than anything. We are thrilled for his future and we are overjoyed for the man he will become one day.

So here's to our bright boy. Our boy filled with joy, laughter, LOUDNESS and cheesy grins. A boy that's hard to catch and easy to hug. A boy that's already so incredibly handsome. A boy that is gentle and shares precious hugs and kisses with his loved ones. A boy that would give anything to play and run, especially with his daddy. A boy who will have so many stories to tell and so many things to say.

We love you up to everything in the world Soren Lind Wallace.