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One mom’s experience: A story of hope

When Lily asked me to share my story about my daughter, Emma, and her autism spectrum journey, I wasn’t sure at first if I could. Our journey has been long and it’s been so hard at times that parts of it are still very emotional and difficult for me to revisit. Once your child is recovered, you just want to move forward and never look back, but I know that my looking back might help someone else to look forward.

The Autism Spectrum Diagnosis

Emma hit all of her developmental milestones up until around 16 months and things deteriorated. She stopped talking. She stopped looking at us. At first I thought she had lost her hearing. We took her to the doctor and expressed our concerns. He suggested we get her fully evaluated at the local Children’s Hospital, so we did.

I was completely unprepared for an autism spectrum diagnosis. The doctor told us that she would probably never talk again and that we should “come to terms with that as soon as possible.” I was so angry. Deep inside I was afraid too. I asked what we could do and he said, “put her in ABA and hopefully she will be moderately functional.” I sobbed all the way home.

Searching for What Comes Next

The waiting list for us to get ABA, the only thing we were told could help, was over a year long. Within a few months, my daughter was toe walking, hitting herself in the head, constantly chewing on non-edible objects and had non-stop ear and bladder infections. She was hardly sleeping and was constantly leaning across furniture, which I later realized was because she was horribly constipated.

I initially just started looking for something I could do while we waited for Emma’s name to hit the top of the waitlist. I was desperate, unbelievably stressed out, and the self-harming was becoming terrifying. She’d wake up in the middle of the night and slam her head over and over into her headboard. I felt so helpless and I would just try to hold her, both of us crying. It was a very dark time.

Discovering the Root Causes

I learned through research that Emma had a damaged immune system. This led to viral infections her body couldn’t kick on its own. She also had a damaged gastrointestinal system, leaky gut syndrome, and bacterial and fungal overgrowth. Her sensory perception was on overdrive, making noises unbearable and causing her to only be able to wear three very soft pajama dresses without throwing a fit. My partner and I were beyond exhausted and our marriage was beginning to suffer.

One of the first things we tried was Andy Cutler’s Chelation protocol. We saw improvements in her sleep, self-harming, and sensory issues within a few weeks so we kept going. We changed her diet and her gut started to heal. I read that methylcobalamin B12 (often shortened to MB12) could kick-start speech so we flew out to meet Dr. Neubrander. Although we had some increased hyperactivity at first, we finally started to get some words back. We added HBOT (hyperbaric oxygen therapy) and she continued to improve.

Finally Seeing Hope for a Thriving Child

Within two years, she was fully verbal. She still has a slight delay, but she was able to start kindergarten without an aide. She is now thriving socially and academically and, although we still do some supplements, we are expanding her diet and feel she is pretty much recovered.

Her ATEC was 129 when we started and was 7 the last time I did it and that’s just because she was still a bit behind with speech. I haven’t done it since then because I haven’t needed to. She’s a little quirky, but in all other ways, she’s a typical kid. Most importantly, she’s happy and no longer in pain.

Final Thoughts

I didn’t set out to “cure her autism” as a few people have asked me. My only goal was to get my baby healthy, to stop the self-harming, the constipation, the constant infections. I wanted her to be able to sleep. I wanted to be able to sleep. When she was hurt, crying, or upset I wanted her to be able to tell me why so I could make her feel better. I just wanted her to be okay. As we healed her physical issues it was like her brain was able to pick up with development where it left off.

She was evaluated one last time for 1st grade and didn’t qualify for an IEP and has no diagnosis.

Her return to health has been hard-fought, a lot of trial and error, so many tears, and a fair amount of money. There were times I almost gave up. I can’t bear to look at pictures from that time and even just writing this has been difficult. Even with all of that, I’m glad I fought for her health and for her voice.

I hope I didn’t discourage anyone from embarking on this journey, but it was important to me to be be honest about how challenging it’s been. Like climbing a mountain, it’s hard and sometimes you want to quit or think you can’t do it, but the view from the top makes it worth everything. Hang in there and don’t be afraid to begin. It’s my wish that you too can someday share your child’s story and pay hope forward.

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