Erin & Lennon's Autism Journey

April is Autism Awareness month. I have invited my friend Erin to share her family’s experience with Autism. I met Erin on instagram in the early days, as our sons are close in age. I think I discovered her thru the hashtag #boymom or something cute like that. Erin posts the sweetest looking fotos of her cute kids, house and husband full of SoCal sunshine, palm trees and cute clothes that make you ask your self again and again why you live in the rainy Pacific NW. And don’t get me started on her daughter Morrison’s nursery, that will be for another post!

Back to Lennon though. Lennon and Mario are so similar in a lot of ways and I relate to so much of what she shares as a mother. Not until maybe a year or two ago did I learn via a caption that Lennon had been diagnosed with Autism. I love the awareness and visibility she is bringing to her approach in raising her son and admire her so so so much. Read on to hear about when and how her son was diagnosed with Autism in this honest, emotional and heroic look into her highs and lows.

Our Autism Journey by Erin Pino

Three years ago I became an Autism Mom. If I could go back in time I would tell my scared, defeated self “everything is going to be ok.” Actually, “it’s going to be more than OK.”

While scrolling through social media I often find myself wondering what sport my almost 5 year old Lennon would be involved in had he not been diagnosed with Autism. Baseball? Soccer? Would he go to be on the Giants? Would his Dodger loving dad approve of that? All these proud mom bragging moments that I temporarily let get to me. Sadness, then anger creep into my heart. All these parents so proud of their children. Children that probably have tons of friends on these teams and who are comfortable telling all these friends what is on their mind with ease. Children that eat their meals and sleep all night. I have to remind myself that comparison is the thief of joy. I am getting better at this, but I will admit it is not easy wondering what if.

Mourning the loss of the expectations you had for your child or the child you had envisioned while pregnant is a process. All the hopes and dreams taken for granted. 

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I knew my son had Autism at six months of age. As an infant he was a horrible baby. I fell into a deep depression and was overwhelmed with my new normal. This was the worst time of my life. It was hard, really hard. I had heard the first three months are a blur, but after having my second child, it confirmed to me that Lennon was an awful babe. He was intense and demanding. Cried ALL THE TIME. He never slept, still doesn’t. He hated to be snuggled which made bonding incredibly challenging. He slept 45 min to an hour stretches. Never wanted to be put down, yet hated everyone holding him. The only way to calm him was speed walk around the house. I am talking the Olympic Speed walking sport. I was sad, and so alone as my husband returned to work. Were all babies like this? Why doesn’t anyone prepare you for this? I was in survival mode. It was awful. 

The days and months went on. I often would distract myself with planning huge parties and throwing myself into my career to stay sane. When Lennon turned a year old we threw him the biggest bash to celebrate with family and friends. Now I can admit this, as then I would have never accepted this is what I was doing to stay mentally stable. That damn mental health stigma I tell you.

By one year old he would spin in circles spotting the wall all day long, he would move his arms flapping like a bird, he didn’t have any words, loved playing with toys at eye level, fixated on spinning objects, lined toys up by color and size. I mean lined everything up, especially my shoes. Still wouldn’t sleep, and don’t get me started on his eating. We got rid of the bottle at 11 months because he couldn’t hold his bottle so I guess that was a plus from what I hear. Rubbing lotion on him was as if we were rubbing acid on him. If he got his clothes wet… the neighborhood would know. He was aggressive and I was his person to take out most aggression on. He was a biter and a head banger. He would bite me if his toys wouldn’t work, he would bite me if he couldn’t communicate, and he would bite me just to bite me. Later, after learning the functions of behavior this made sense, but to a new mom, this was heartbreaking. 

During these two years everyone and their mom was a toddler expert. Receiving unsolicited advice day and night. The only thing I took from that advice was a feeling that I was a horrible mother, and I did this to my son. It was my fault. I fell into a deeper depression, I was a failure, and an embarrassment to everyone. I refused to take my child out in public in fear of judgement. Judgement and Mom Shaming are real. Don’t do it. Offer to help. Bottom line. Lift each other up.

Through all of this I fought for Lennon’s treatment. Against several, several pediatricians that wanted us to “wait and see”. I trusted my gut, and fought hard. Something was off, I didn’t know what, but something was off and we needed help. Finally one Dr. (the head of Autism Department) listened, and validated my concerns. It was such a relief. I wasn’t making this all up in my head. Soon after came the second and third opinion and all three docs diagnosed him with Autism Spectrum Disorder, level 2 without an intellectual delay. I was right and so thankful we didn’t “wait and see” as the first years of brain development are crucial. Early intervention is so so so important for their brain wiring. But don’t get me wrong, seeing his diagnosis on paper was a flood of emotions. I let out several good cries. Anger, sadness, excitement, you name it I was feeling it. I was mainly heartbroken that my child was confirmed “different” and I didn’t know what his future looked like. 

Today, we are in a great place. We still bat off the daily comments of “He doesn’t look Autistic” and I find myself having to defend his Autism. I want to say to people, “just because my kid doesn’t look like another kid you saw with Autism doesn’t mean he’s not on the Autism Spectrum.”

Back to the great place though, we completed a full year of 40 hours a week of in home early intervention Autism therapy which included, ABA (behavior), OT and Speech. It was exhausting and pulled us in every direction possible, but we made it. Many many tears were shed, but the progress we witnessed from our son was all worth it. Lennon still doesn’t eat much, still stims (Austism term for self stimulatory behavior) and crashes into his crash pad, his speech is amazing, behavior has made strides, but we are still working on it. Our biggest challenge at the moment is his sensory seeking behaviors, but I am confident we will figure his needs out soon. 

Everything is going to be ok. Lennon is my son, and this diagnosis doesn’t change anything. I don’t love him less. I am thankful for this diagnosis in a way. It has taught me patience. It has taught me to be strong and resilient. To say this diagnosis is challenging would be an understatement, but I am a stronger person because of my son. It’s an honor to be in Lennon’s presence and I can’t wait to witness what he accomplishes.

Thank you so so so much Erin for sharing your story. You are so strong and definitely #mamagoals in by book. Your whole family is so damn lucky to have you.In the next couple days I will also be sharing another post from Erin about the five things that having a child with Autism has taught her. Post comments, praise or questions for Erin below and she will answer them.

xx ly