By Paulette– TACA Mom
We have 2 children, both diagnosed with autism. Our daughter, Sophie, is 6 and our son, Charlie, is 4-1/2 years.
Sophie was born prematurely and with many complications after birth and in her first few months. She was severely anemic at birth due to a fetomaternal hemorrhage, suffered a traumatic birth, and a brain injury. She had severe jaundice and feeding difficulties, bloody diarrhea at 5 weeks, constipation from 3 months on, a milk protein allergy, projectile reflux, low muscle tone at 4 months, and from birth always struggled with sleeping. At 6 months her head growth started to accelerate, and by 12 months she was diagnosed with “macrocephaly,” or having a big head.
Since her pediatric clinic focused on infant development, we have detailed records of her developmental milestones. Surprisingly, she developed mostly on track. She was social and happy, babbled, smiled constantly, and laughed. At her first birthday, we thought we were in the clear. We couldn’t believe the obstacles our child had overcome.
When Sophie experienced a major regression following her 15-month “well check-up”, we were completely devastated. We didn’t even know what “Autism” was, and we were utterly confused and lost. But we knew she had changed and had lost many skills, including socialization. It was like the light had gone out from behind her eyes. We had pictures and videos of a previously social and happy baby. Now our child was quiet and withdrawn and no longer babbled or signed. She’d lost the few words she had started to say, no longer made eye contact or responded to her name, and didn’t seem to recognize her daddy. She spent most of her days flipping through books by herself, dangling strings in front of her face, flapping her hands and moaning.
Shortly after our daughter regressed, our son Charlie was born. We were overwhelmed parents in a city where we knew few people, and we were dealing with a newly regressed toddler and a newborn. Our “healthy baby,” Charlie, quickly showed signs of having his own health issues. Despite being a strong “nurser” in the hospital, something changed the day he was discharged. He received his Hepatitis B vaccine and had a circumcision, and when we got home from the hospital, he wouldn’t nurse. Several attempts later, he still wouldn’t nurse, so we started panicking. For the next week, I pumped and my mom fed him by syringe. He lost a lot of weight, but after 3 weeks he had rebounded, was nursing and gaining again. He had some jaundice, but for the most part seemed to be okay. It always puzzled me how he had struggled so much that first week, especially after 2 successful days in the hospital.
Charlie went on to have his own list of diagnoses- eczema at 2 months, constipation at 3 months (just like his sister- despite being strictly breastfed), projectile reflux, rashes, poor sleeping patterns. At 4 months, I felt like his eye contact wasn’t what it should be for a 4-month-old, and I brought it up to his pediatrician. At his 6-month appointment, she did a developmental assessment on him and referred us to Early Intervention services. Everyone wanted to tell me that he would be fine and catch up, but I was learning to always follow my instinct. At 7 months, Charlie had Early Intervention therapies.
At the same time, Sophie was finally diagnosed with autism, and we were told by 2 different clinics that she was on the severe end of the spectrum. One of the diagnosticians told us that she would always be severe, “even if she talks, she will still be severe”.
One of the first therapies we tried with our daughter was speech therapy at a traditional clinic in a hospital. After 6 months of three appointments per week, she had regressed even further. We were frustrated, but a nagging feeling told me something medical was going on preventing her progress. She wasn’t sleeping, her constipation and diarrhea were still a problem, and she had a bloated and distended belly. She had many skin rashes. Her pediatrician encouraged us to continue feeding her cow’s milk and milk products, despite her obvious early issues with milk as a baby. We decided to take milk out of her diet anyway. We had also heard of success stories when parents removed gluten from their child’s diet. So we removed gluten, even though her doctor told us it wouldn’t make a difference and could possibly hurt her to not eat dairy or wheat. Within weeks, we got the first eye contact we had seen from her in many months. Her therapists started to notice the change, too. We also noticed an improvement in her bowel issues after removing gluten and dairy. Moving forward, we knew that our daughter’s issues had a medical basis and as her parents it would be up to us to connect the pieces.
Once Sophie was diagnosed with Autism, and Charlie was showing plenty of red flags, we started connecting with other parents who were dealing with similar circumstances. The more I heard other parents’ stories of regression in their kids, the more I knew what happened to my child was the truth. I learned so much from the other moms and dads those first few years (and I still do). We started changing how we lived our lives as a family- we changed our diets, cleaning products and personal care products, started researching vaccines (something we hadn’t done before our daughter’s regression), and started questioning everything.
We put Charlie on the gluten-free, casein-free diet as soon as he started eating solid foods. But he continued adding to his lists of diagnoses- anaphylactic food allergies starting at 14 months to peanut butter, almond, and sesame, and at 17 months to cow’s milk, goat’s milk, egg, soy, oat, wheat, and eventually other foods and nuts. He was diagnosed with asthma at 23 months, the same week that he received his autism diagnosis. He still struggles with gastroesophageal reflux disease. He has had several Emergency Room visits for asthma and food allergy reactions and has been hospitalized for anaphylaxis twice in the last year
Fast forward to today. With 2 kids on the spectrum, it would be easy to sit around feeling sorry for our kids and for our situation. While we definitely have ongoing struggles with both kids, our children are amazing little people with so much potential. We have made a conscious decision to focus on their strengths and trying to help them become the people they are destined to be, despite their constant struggles and the everyday reminders of where they “should” be right now. Some days are harder than others to stay positive, but when things get tough, we dig in our heels and work hard to find a solution.
At 6 years old, Sophie is no longer considered severe. She is still considered to have “moderate” autism, but we think she is high-functioning. She still struggles greatly with sleep, but we have hope that it will improve as she grows. She is a smart little girl who is always paying attention, even when she seems aloof. She is learning to read and can type like a fiend- she seems to have a photographic memory for spelling and loves to type out her favorite memories with friends and families. She is limited verbally, and still struggles with answering questions and any kind of conversation. But her typing skills have given us a window into her brain and we can see that there is so much going on up there, and it is our job as her parents to help her find her way out. Right now, she is not in a traditional kindergarten setting, but she has an amazing teacher in a small private class, and dedicated ABA, OT, and speech therapists.
Charlie has made great progress since his early delays. While he is not yet close to losing his diagnosis, he is high functioning. His language is progressing every week, which is encouraging to see. His struggles are mainly with social anxiety, sensory issues, OCD and anxiety, social interactions, pragmatic language, and his ongoing medical issues. But he is a smart and funny little guy, who is always showing me a different way to look at the world.
We have been so excited to get involved with TACA. When we were new parents dealing with a regression in our toddler, we had no idea where to turn. I can only think if I had found TACA back then, where would my kids be today? Where would Charlie be if I had learned what I know now, a year earlier? Meeting other parents and networking for ideas and companionship has been the number one best thing to happen to us. I love the way TACA strives to connect parents to other parents. Every time we meet a new family and connect them to the resources they need to help their child, I feel like we are one more family stronger and one more child is going to get the help needed. That is why I volunteer for TACA and that is why this organization is so important to our family.