This blog comes to you courtesy of Holly Riley, an amazing warrior mom and a personal friend of mine. I think her piece is the perfect choice to kick off this month’s guest blogs because it may challenge what you’ve been told about autism. I am so grateful to her for sharing her story, and I hope that in addition to an understanding of what families experience during regressive autism, it gives you a sense of hope.

I want to introduce you to two boys, my toddler and my teenager.

That little guy… where to start? I guess it’s important to know that everything started off normally. Pregnancy and childbirth were pretty unspectacular (except for the view from our delivery room-we had a great view of the Hollywood Hills including the Hollywood sign). Aside from slight jaundice that didn’t even require treatment, he was released from the hospital with a clean bill of health. Our big, healthy newborn boy was welcomed into our home with love and care. Since he was our second child, we sort of knew what we were doing, so we were impressed with what a good baby he was. He was 10 pounds at birth and always hungry, but aside from that, he was a very mellow little guy. He started interacting with us by cooing, smiling and laughing right on schedule. He rolled over, crawled and walked right on schedule. He loved being read to, even as a baby, and started making animal sounds when we read his favorite book. That is as close as he ever got to speaking, and little by little, he stopped roaring like a lion.

By his first birthday, he was showing signs of autism, but at the time we didn’t understand what was happening. We lost our baby slowly as he faded into his own world and became overly sensitive to everything. Sudden or loud noises would trigger a huge reaction from him and he covered his ears. But at the same time, we sometimes wondered if he was deaf because he stopped responding to us and didn’t even notice when we came or went. He spun everything! He lined his toys up. He started walking on his toes and had tantrums when we didn’t follow routines. He would have tantrums out of the blue and roll on the floor.

His health declined too. He had a series of ear infections that didn’t respond to antibiotics and his arm was covered in eczema. He suffered with nearly constant diarrhea and a terrible diaper rash that didn’t respond to any treatments. Most toddlers start to limit their foods, but by 18 months of age he was down to cow’s milk, wheat toast with jelly and, occasionally, cheese pizza. He would drink a gallon of milk a day. At his toddler classes, he didn’t even notice the other kids. On more than one occasion he literally ran right into another child or plowed right through the children, as if they weren’t even there. He was overstimulated and looking for the door. He was an eloper!

By his second birthday, we knew something was going terribly wrong with his development and we sought help. We got the autism diagnosis and therapies up and going relatively quickly, but even after hundreds of hours of therapy (Applied Behavioral Analysis, Speech Therapy, Occupational Therapy), there were still zero words. After reading about the Gluten Free/Casein Free (GFCF) diet, we were skeptical. But so many families reported seeing improvements, and we realized that it was safe enough to try. So we took him off of cow’s milk, and within a few days, it was like a fog lifted and he started to notice us again. We researched more, and found a reputable local doctor who was experienced with treating autism. We started biomedical treatments and more improvements came: his diaper rash got better, the eczema and ear infections disappeared, he finally slept at night, and his babbles started to sound much more meaningful as if he was trying to talk. But with his third birthday looming ahead, standardized tests had his language development in the second percentile. Nobody ever seems to be able to answer the question, “Will our child ever learn to speak?”

It’s hard not to be discouraged by these formal assessments and lack of answers. Compared to his peers, those tests reveal his huge delays. But I always think about how far he has come since we started treatments and focus on his progress, slow as it may be. I’m always trying to connect with my baby and help him come out of his shell. I am constantly learning – about therapies, diet and supplements, immune/GI/neurological system dysfunctions and imbalances. I push everyone to keep high expectations for him – but it’s hard! Some days I feel on top of it, but often it’s like autism is dragging me along as we miraculously arrived on time for four or five different appointments every day. But I have to be the driving force. Nobody else can do it.

At his first IEP meeting, the school district’s speech therapist wrote a goal to have him speaking 50 words by the age of four. We fought to change that goal to 100 words, knowing even that would mean he was still far behind his peers. But we wanted to set the bar higher. The district reluctantly agreed, and the school speech therapist was cool and polite but clearly thought we were delusional to think he might meet that goal. I personally had a goal that by age four he would be speaking thousands of words-too many to count. Some people might say it’s a fantasy, but I’ve never stopped believing that my baby was going to get better.

Now let me tell you about my teenager. Okay, he’s just barely a teenager-today is his thirteenth birthday. This kid is social and connected! He’s tuned in to the social workings of his small middle school, he loves hanging out with his friends, and he notices who likes who and tells me all about it.

We weren’t sure how he would do academically with the big transition to middle school, but he’s happy to go to school and thrives there. He would prefer to spend his time playing with friends or watching YouTube, but I think that’s pretty normal for a kid his age. In the fall he joined the Cross Country team and loved getting to run with his peers. At a recent parent-teacher conference, I was told that not only is he excelling academically in all areas, he is a leader in his classes. The other students look to him when they need help and, recently when he was absent, the other kids asked where he was.

His teachers told me that he has patience and kindness with all kids, that he is honest and compassionate. In English and history classes he uses a tremendous college-level vocabulary and enthusiastically participates in class discussions. In science and math, he is working ahead of the class and demonstrates advanced critical thinking skills. He is able to make connections with the work they are doing and other lessons and experiences, and he articulates those connections meaningfully to the class.

He has a great sense of humor and an unlimited imagination. Recently he has been telling me various jokes he makes up during the school day, and I’m encouraging him to submit them to the local paper to be published because they are quite clever. He is able to synthesize his many interests and create stories and games mixing characters and settings from history and his favorite books, video games and television shows. When he has friends over to play, he flows easily from his interests to theirs. He is a patient and kind sibling, and there is a gentleness about him. He is generous in spirit and enjoys spending time with everyone in the family.

I cannot express in words how proud I am of my teenager. It’s not that I love him more than my toddler. Just over a decade ago, he WAS that toddler I told you about at the start of this blog. My toddler and my teenager are the same kid.

He has shown me so much about life and love and hope. His recovery is the product of hope in action. The journey over the past ten years has been filled with starts and stops, big gains and huge disappointments, mistakes and lucky breaks. There have been many very steep learning curves, and it has been a heart wrenching roller coaster. But through it all, our hopes and dreams for our son have never changed. Before the diagnosis and through his autism recovery, we have always wanted the same thing. We want what all parents want. We want him to be healthy and happy so that he can pursue his passions and live a full life.

Autism recovery is real.

Happy 13th Birthday, Quinn!

 
Holly Riley has been an educator for 20 years. She volunteers as a Parent Mentor and Chapter Coordinator for Talk About Curing Autism (TACA) and as a Rescue Angel for Generation Rescue. She has spoken about autism recovery at local and national conferences and shared her experiences with autism through writing, interviews and videos. Her family was featured in the film Trace Amounts. Holly lives in Glendale, California with her husband, Ford, daughter, Fiona and son, Quinn (who recovered from autism).