My childhood best friend was a Pediatric Nurse. Her advice for me when dating was to marry someone you could weather a sick child with. This advice always stuck in my head.
This week my husband and I celebrated our 15th wedding anniversary. My younger sister and her husband weren’t able to come to our wedding as their son was in the hospital fighting for his life. He died at six months old from a rare genetic disease. Our hearts broke for the loss of Finn, but my sister and her husband were solid and they weathered their storm together and are in the process of adopting a child.
When my husband and I found out we were expecting we were so excited! Our son was born in December 2006 via C-section and we got to bring him home from the hospital on New Year’s Eve! His first year flew by and was great. He was meeting his milestones, started to talk and took his first steps. We also found out we were expecting our daughter.
He had his one year check up and ten days later he had an anaphylactic reaction to peanuts. His immune system was overwhelmed. He lost his words and was hospitalized for breathing issues and then was diagnosed with multiple life-threatening food allergies. His eye contact disappeared and he became more and more disconnected from us. He lived in his own world and wanted no part of ours. He stopped responding to his name. When I came home from work the only way I could get him to notice me was to make a primitive animal sound.
He kept developing more and more allergies and actually stopped growing. At age 1 he was approximately 90th percentile for height and weight. He stopped growing for the next 2+ years and dropped to 7th percentile. He was failure to thrive.
At 18 months, he was diagnosed with Moderate to Severe Autism. We were told to focus on teaching him life skills. His future was not going to be what we originally planned. My husband and I knew our son was in there and we committed to do anything that could help him thrive and to bring us closer to him.
Two weeks later his sister was born. I was out on maternity leave and then took family leave. When my company refused to allow me to work from home I resigned. Our mission was to help our child.
We started Early Intervention immediately – speech, OT, PT and ABA. We also started to meet with doctors to try to understand all of the allergies and breathing challenges as well as to all of his GI issues. He was pooping 10x per day. We were told GI issues and allergies just happened to be common with autism. This never sat right with me. What if we addressed the root cause of the allergies and GI issues- might this impact reduce his autistic behaviors? We took turns attending as many Autism conferences we could. We had our notes and questions and photos of poop to show doctors to see who might have answers for us. The GI discomfort our son experienced caused him to posture his stomach on furniture as well as head bang on the floor.
As our son’s allergies got worse and he had two endoscopies, one pill camera and one colonoscopy all before he was 2.5 years old, we were instructed to put him on a liquid medical food diet for a year to help minimize his allergies and GI distress. Medicines would pass through our son undigested and as his mother I was failing at feeding my child.
I became a certified health coach. My intent was to use this knowledge and connections to help heal my child.
A book about homeopathy and our life changed. With the right remedy my son – gained 10lbs and grew 3 inches in 8 weeks. We then slowly started him back on foods. Grass fed animal protein, bone broth, some vegetables and some fruit. Only organic, only homemade and non processed.
For my son, every time we addressed his underlying medical issues he improved – and his “autism” was less. Also when we started to love the autism not try to make it go away or fix it- my son became more and more connected to us. We are so grateful for “The Son-Rise Program” from the Autism Treatment Center of America. They taught us to love unconditionally, enter our son’s world to develop a connection, and (when he was ready) introduce him to our world. We gave up all technology and TV for two years to better connect with him (and his sister). The results were amazing.
My son is now 12. He is just finishing 5th grade in our local public school with a class of 27 students. He still gets some support for Reading. His autism is considered mild. His ATEC score (Autism Treatment Evaluation Checklist) is a 4 – down from a peak of 77.
He is the happiest child! He finds the joy and good in everything. He consistently makes honor roll and he won the Citizenship Award for friendliest and happiest kid in his class. When he grows up he wants to be a Comedian, Architect, Cartographer, Priest or Mathematician.
Our journey with our son has not been easy, but I am so grateful for the lessons learned. Our son with his sister helped us transform. We are more kind, loving, grateful and understand the power of judging ourselves and others less. We are constantly growing.
My husband and I are on a mission to help others who are in similar position to where we were. We know what it is like to have a child with moderate/severe autism. We know what it is like to have a child who is allergic to everything. We know what it is like to feel alone or to be judged by others (including family).
We want to share with you our biggest learnings – the tools that have made our journey more meaningful and more enjoyable. It was not an easy journey and it felt so hard at times – but it has been a beautiful, transformational one that we know now is nothing but a gift.
Autism brought my husband and I closer together. We know that was a gift and that for many other parents it does the opposite.
Here are some things that really helped:
- We checked our ego at the door. We chose not to battle each other and finger pointing was not allowed. Every decision was focused on what could help our son thrive.
- We got extremely informed, organized and prepared. Kept a daily log and treated every doctor appointment like a board meeting.
- We never abdicated decision making to anyone (including doctors).
- We shopped around for the right pediatricians and doctors. Curating our team made a huge difference. That meant many visits with doctors who weren’t a fit. That took much time, effort and cost – but it was so worth it.
- We leveraged each others strengths. When it came time for a key decision we got aligned. And if we couldn’t we defaulted to Mom’s intuition.
- We went all in on interventions that worked. When our son diagnosed with an allergy to gluten and dairy – the entire family went gluten and dairy free (and yes my husband is Italian).
- Embrace inconvenience! We came to know that inconvenient measures yielded the greatest results.
Cass spent her career in marketing, sales, creative and business development. When her son got sick she took a three-year sabbatical so that she could focus on healing. Cass understands the body’s innate power to heal. She has put in over 15,000 hours in the kitchen – creating recipes to accommodate allergies and special diets. Cass is a certified Health Coach from the Institute of Integrative Nutrition. Follow Cass on Instagram: @cassarcuri
Len’s professional background and expertise is in process improvement. Len loves to help clients achieve their goals, realize their potential and upgrade their body, mind, and life. He’s a Six Sigma Master Blackbelt and a certified Bulletproof Human Potential Coach. His coaching combines proven productivity tools and biohacking to get results faster with greater ease. Follow Len on Instagram: @lenarcuri
Cass and Len are co-founders of Warrior Parent Coaching and The Warrior Parent Bootcamp which is launching in May.