Hi! I'm Shauna. A wife, a designer, and a very blessed mama of two healthy boys: Sawyer (2 years old) and Edison (4 months old). We live in Philadelphia, in an 70's a-frame house surrounded by trees. My husband, Stephen, and I run a small handcrafted business making men's and kids neckwear under the name forage. I love coffee, mid century design, and spend my days immersed in a world of trains, trucks and tractors with Sawyer who is undiagnosed autistic.
Miggy: Hi Shauna, thank you so much for sharing your story and your sweet Sawyer with us today. Let's start at the beginning, you told me you first starting noticing something was 'off" with Sawyer when he was just 6 months old. What were some of the symptoms and signs you were first noticing? I know Sawyer doesn't technically have a diagnosis yet, but at what point were you able to get some professional acknowledgement that your feelings were correct and how did that feel to finally receive that acknowledgement?
Shauna: Sawyer was born early via emergency c-section when I developed preclampsia. He was readmitted to the hospital at a week old and labeled “failure to thrive” after losing more than 10% of his birth weight. Because of these issues, we knew he might be behind in reaching milestones. Around six months, I noticed he rarely laughed, smiled, or made eye contact. By one year, he wasn’t babbling or reaching for us. I started to mention my concerns to Stephen and by 16 months we shared our concerns with our pediatrician. At eighteen months, he was dropping skills and the few words he had. He was incredibly focused, playing by himself for hours and never looking for us. His world revolved around cars, trucks, trains... anything with wheels.
Our pediatrician suggested we have him evaluated by early intervention. They determined that Sawyer was delayed in three areas--verbal, social, and sensory--and qualified for therapy. When they told us, I cried. I knew we would finally have support in working with him. For the first time in over a year, I didn’t feel crazy or alone.
Miggy: Along the same vein of that first question Shauna, in your email one of the things that most stood out to me was how you said you've had to really fight to get Sawyer the help he needs. Can you tell us about this process--how long it has taken, what are the hoops you've had to jump through? What advice would you give to other moms facing the same, frustrating situation?
Shauna: When I discovered the m-chat for autism it scared me how many of Sawyer’s quirky behaviors were reflected in the questions. Little things I never connected like walking on his tip-toes, pacing the perimeter of the playground, avoiding hugs... I knew instantly that sawyer was on the spectrum. Getting Stephen to acknowledge the things I was noticing became my biggest struggle. He is forever the optimist while I’m the type of person who googles medical symptoms at 3am. He insisted, like our friends did, that Sawyer was fine and I just needed to be patient with him while he caught up. It wan’t until Stephen listened to a “radio lab” pod cast titled juicervose about autism that he came to me and said he thought we should talk to our pediatrician. It was the first time he processed that Sawyer's behaviors could get worse with time if we didn't find ways to support him. Even now, when we have evaluations, Stephen and I often disagree on how to answer questions about Sawyer.
Getting appointments with specialists and developmental pediatricians is a huge struggle. We’ve been on countless waiting lists and are currently waiting for seven more months before Sawyer will get full autism evaluation for his official diagnosis. We are so lucky that he qualified for early intervention and was paired with the most amazing therapists, who like us, won’t settle for Sawyer being in a grey area.
Miggy: Can you explain how Sawyers needs affect your day-to-day life?
Shauna: Therapy is a major part of our life. Sawyer has general, occupational and speech therapists who meet with us weekly in our home and in the community. But in reality, everything we do with Sawyer is approached as therapy--brushing teeth, putting on shoes, coloring, meals, trips to the playground, grocery store, library... it all takes planning and a lot of time. We’ve been creating and using social stories (little photo books) to help us visually communicate daily activities with Sawyer-- they help but they are a lot of work. We have to talk about everything we’re going to do in detail and over and over before we actually do it. And keep our fingers crossed that there’s not a change in plans.
Sawyer develops little obsessions at all the places we visit routinely. At the playground it’s the latch on the gate door, at the library it’s an alphabet poster on the wall, at the park it’s a set of stairs around the corner... it’s extremely difficult to redirect him once he’s focused on a preferred activity.
Miggy: What are the biggest concerns you have for Sawyer?
Shauna: Right now, my biggest fear is not getting a diagnosis for Sawyer. It’s not the label that we’re searching for but continued access to the support and therapy he needs. We have another son, Edison, who is 4 months old and sawyer’s diagnosis would also grant him early intervention services (even before autism symptoms may present themselves). The difference we’ve seen in Sawyer in the six months since starting therapy is monumental. He’s grown from having only 4 words to being able to communicate with us (even if it’s not always easy). Having to wait another seven months to meet with a developmental pediatrician is infuriating, especially after experiencing the benefits of working with him intensely.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Shauna: We recently posted our dining table for sale on craigslist. Sawyer was home when they buyer came to pick it up and as they started to carry the table out of the room, he immediately started sobbing, tears streaming, saying “bye table” over and over again. It immediately turned into a inconsolable melt down during which Stephen and I quietly laughed to each other. With all our focus on transitions and obsessions, it didn't cross our minds that he would be taken off guard by the absence of a table. Now, it’s so obvious to me - but in the moment, it was unexpected, sweet and funny. One of those little moments i’ll never forget.
Miggy: No one ever wants to find out something is "wrong" with their child. No matter when we receive this news it seems like we, as parents, are never prepared. Autism in particular is specifically one of those conditions we hear a lot more about in the media these days, yet there is still a lot of fear and just plain ignorance surrounding the condition. As someone who has stood on both sides of the fence--before Autism and after Autism--are there some ideas you had about autism and perhaps special needs parenting in general that have now changed? What would you say to the mom who is just starting on this journey?
Shauna: I feel like we’re still in the middle... we have mostly questions and very few answers. Right now, Sawyer’s autism is in control, not us. We try our best to navigate epic meltdowns in public. We’re late everywhere we go. Our days are spent trying to balance routines and flexibility. But none of that matters when I look at him all I see is the most perfect little person who fills my heart with so much love I feel like it’s going to burst.
Instagram has been an amazing community where i have connected with women who inspire me daily with their honesty in sharing their journey. ladies like: tamra taggart, lynn russell, kelly fondots and lindsey joy. That’s where i found you and instantly fell in love with you and the mamas you’ve featured.
Miggy: Lastly, what is the biggest lesson you’ve learned since becoming Saywer's mom?
Shauna: Trust your gut.
AMEN Shauna. I've said it before and I will continue to shout it from the rooftops, when it comes to our kids we just know. Deep inside a mother just knows when something is not right with her child. And Shauna I love how even though you feel like autism is in control, the love you feel for little Sawyer always shines through. Thank you for your heartfelt honesty. I always want parents who are just entering this world of special needs to know that the love you feel for your child will overcome the worries, fears and burdens you may be feeling now. Don't get me wrong, the difficulties the pain, the frustration, the heartache, the financial burden...those are all real and hard, but so is the love. And the love is what will help you tackle the tough. Thanks again Shauna for your beautiful words and your beautiful photos. I think we can all agree that Sawyer is a little dreamboat!
As always if you or someone you know would like to participate in the special needs spotlight please email me--or have your friend email me directly--at thislittlemiggy at gmail dot com.
Have a great weekend ya'll.