Hi, I'm Avery's Mom!

My Story

Hi, I’m Avery’s Mom!  

As many moms of children on the spectrum know, there are tons of trials and errors, sleep disruptions, therapies, food challenges, modifications needed, expenses and worry. There is also joy and laughter, amazing milestones and big achievements, and endless opportunities to use our “mom ingenuity” to “make it work”. I started this website and blog as a way to share my experiences raising a child on the autism spectrum and to share the resources and strategies that have worked for me. 

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I am also a Self-Direction Broker helping families understand OPWDD and navigate the Self-Direction process so they can gain the clarity, support, and services they deserve. I serve both Region 3 (Hudson Valley: Orange, Rockland, Sullivan, Westchester County in New York and can help with a start-up budget or provide support refining your budget and services.  Feel free to email me with questions and for more information! 

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A bit more about me ...

My name is Shannon. I am a Gemini. I have been affectionately described as the "Idea Generator," "Fun Center," "House Director," and "CEO/COO of Avery" by my husband. My actual career has been in leadership roles in higher education and workforce development. When I first wrote this about 18 months ago (yes, it took that long to get it together and publish this website!), I was approaching my 40th birthday and had been spending time taking a pause to think about short- and long-term goals for myself and my family in all areas.  It felt really good to finally have the head space and optimism to do this.

The last 5 years has been challenging. In juggling my life as a parent, professional, and citizen of the world, it was an unbalanced time filled with grief, anger, fear, worry, anxiety and sleep deprivation (which makes everything worse). We called this the time of just “trying to survive.” We tried a lot of things: special instruction, early intervention, ABA, speech therapy, learning to use an AAC device, occupational therapy, physical therapy, neurologists, developmental pediatrician, functional medicine doctors, caregivers and more. We changed things like sleeping arrangements, moved to gluten and dairy free diet, and how we spend our free time. We had to let things go, like some assumptions and expectations for Avery, and goals and dreams for myself.

Through it all, we did survive. We found a rhythm. And, in shedding those expectations and dreams, new ones have formed. 

About Avery

Avery is my second of two boys. He was born via planned c-section because my first delivery resulted in shoulder dystocia (baby's shoulder got stuck) during natural childbirth. He was also 9 lbs., 12 oz! Thankfully, he did not suffer from any immediate or long-term injuries.

My pregnancy and delivery of Avery was normal and typical (a question I am asked on most intake forms for Avery). I had lost weight before this pregnancy and worked hard to maintain a healthy diet and weight gain. Luckily, my cravings with Avery were not for the same sweets and juices that I had with my first born. Avery was born in May of 2018 at an average baby weight at 7lbs, 12oz. 

Bringing Avery home, we quickly learned he was “fussier” than we had experienced with our first-born. Like my sister and I, I now had two boys who would be complete opposites. My first-born is my cautious, curious, “old soul” of a child who prefers indoor activities and a solid routine. His language and vocabulary developed typically, if not advanced, with one of his first words being ‘garage.’ As I write this, he is11 years-old and finds math easy and enjoyable. He says he dislikes reading but he is a strong reader. The world would call him neurotypical. 

On the other hand, Avery is my carefree, affectionate, think outside of the box, charmer of a boy who loves to be outdoors riding swings and scooters, jumping on trampolines, ripping up leaves and swimming in the pool (or any water activity, really). He also maintains a tight circle of friends through the handful of shows that he has been watching for years: Little Baby Bum, Bubble Guppies, Hello Ninja, Word Party, The Secret Life of Pets.

Jumping back to Avery’s infancy, I believe his fussiness was on account of being uncomfortable. I breastfed for a couple of months until I had mastitis and had to introduce formula. We faced GERD and sleep challenges and, ultimately connected with a Speech Pathologist who specialized in pediatric feeding and swallowing.  She introduced us to Nutramagin, a hypoallergenic formula clinically shown to manage colic due to cow’s milk allergy. I didn’t know it then, but this was the beginning of what would become Avery’s dairy and gluten free diet. Nutramagin is made by Enfamil and is pretty pricey. We were satisfied with Target’s brand of the same formula, so starting using that. I didn't know it then, but this was also the beginning of the above average costs I would pay for raising a child on the spectrum.

With the change in formula, Avery's disposition changed and he developed typically, meeting all milestones through age 1. He spoke some single words and two-word phrases. I have memories of him saying “away” when his father and I got close for a hug or kiss and I am so grateful to have a video clip of him saying “I go” in his little voice while pulling an oversized women’s handbag along the floor with him. Compared to his older brother, his language was developing slower, but our pediatrician assured us this was normal, he had enough words for his age, and more would surely come with time.

Our deepened concerns about Avery began in the Fall of 2019. There is not a single event that I can point to, to mark the change, but this is when my Avery began to slip away. He was no longer gaining words and ultimately stopped speaking all together. He also lost eye contact, focus and attention. In subsequent medical evaluations, I was asked if I had seen behavior that would point to silent seizures, but I had not seen any.

That Fall, our family lost my uncle after a courageous 18-month battle with pancreatic cancer. My uncle was a major fixture in my family. He was a six-foot, four, loud, funny, life of the party, executive chef who always seemed to be in a good mood, always made you feel like you were special, was always ready to lend a helping hand and was always cooking up something delicious! My mother and my uncle were very close, and she was one of his primary caregivers during this time. She was also Avery’s primary caregiver while my husband and I worked. Although he was so young, Avery went through this trauma alongside my mother. When my uncle passed away in September of 2019, everyone was devastated. I can’t help but wonder if all of this could have impacted my baby as it had the rest of my family?

During that same time, Avery had two ear infections and a respiratory illness for which he was prescribed antibiotics and a steroid. He also had his second MMR vaccine. We had a measles outbreak in our community the year before, so he had his first MMR vaccination ahead of the New York state recommended schedule. Of course, our doctors and public health officials had recommended this course of action, and it made sense to me at that time. At that time, I did not know to question or challenge any of these things. I was uneducated when it came to medical topics, and I felt that questions or concerns I raised to medical providers were met with judgement. I can’t help but wonder if this sequence of foreign entities introduced into his body somehow created a perfect storm of reactions in Avery’s body that led to his regression?

In January of 2020, we started Avery in a part time pre-school program. Like his brother, we were lucky enough to have family to care for him at home during the day, and we wanted him to start a structured program to learn more skills and socialize with kids his age. So, we signed him up for morning program a couple of days a week. Placing him in a typical pre-school program quickly made it obvious that Avery was behaving and learning differently than his peers. After a few weeks, and regular feedback about his behavior, the staff politely suggested we seek an alternate program for him.

Avery had been kicked out of school! And then, March 2020 hit and the world shut down. We can all remember, that was a crazy, isolating and scary time. But I had to figure out what was going on with my child and how to help him.  

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We started with a hearing test. He had passed his newborn hearing screening at birth, but I thought that perhaps his lack of expressive language and inability to follow simple commands had to do with a hearing problem? No. His hearing was normal.

Eventually, Avery was evaluated and diagnosed with autism spectrum disorder in April of 2021, a month shy of his third birthday. I can still remember that day when the psychologist came to our home and began asking Avery to do a variety of tasks, most of which he could not.  And then she said, "yes, mom. It is autism. Moderate to severe." I had started to prepare myself for these words, but to hear it become reality was really hard. I felt anger, panic, and fear. I knew nothing about autism. I didn't know what to do next. 

And here we are, 5 years later. Avery is almost eight. I’ll share more about his diagnosis and all the things that followed. It hasn’t been easy, but we have found a rhythm. We have a lifetime of living ahead of us and don't know what future challenges will present itself. However, as Avery’s mom today, I can say that I have learned a lot about myself and the world we live in. I have deepened my patience, persistence and resilience. I try not to sweat the small stuff, I definitely celebrate the wins, and I try to laugh often.

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Thank you for taking the time to read a bit about me and my life as Avery’s mom.