"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...
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. :)