Jenna’s Journey From Autism To Self-Advocacy

When my son Christopher was first diagnosed with autism, I searched high and low for stories about kids who got better. I’ve written a lot about the realities of autism, but the stories of hope are just as important. It was those stories that got me through the difficult times. Kids who recover from autism are not mythical unicorns. Though not every child with autism will recover, there are plenty who do. My friend Susan’s daughter Jenna is one of them. I hope that her story brings hope to all parents taking the long autism road off the beaten path. I am grateful to Susan for sharing their story, and especially grateful to Jenna for allowing her story to be told to help and inspire other families. Thank you Jenna for being not only an amazing self-advocate, but also an advocate for all children and families living with autism.

The Autism Diagnosis 

When I first heard the diagnosis of autism, it brought about so many different feelings and emotions. There was the sadness of not knowing what my daughter’s capabilities would be or what type of quality of life she would have. I was also scared about if I would be able to take care of her, and all the new things I had to learn (often by trial and error). However, one of the biggest emotions was relief.

I had known for a while that something was going on. We had been given diagnoses of Sensory Processing Disorder, Sensory Integration dysfunction, Gross Motor Delays, Fine Motor Delays etc. Now we had a definitive diagnosis. We were so fortunate to have an amazing pediatrician who was kind, loving and supportive. He listened to me and believed what I was telling him. This played such a positive role in helping me stay focused on the fact that my child was in in there. He helped facilitate a variety of services starting when she was 18 months old even though we didn’t get an official diagnosis until age 4. 

Meet Jenna

Many who meet my daughter Jenna now will say to me “She doesn’t have autism” or, “She must have been misdiagnosed” or “You would never be able to tell.” These individuals and statements validated to me that all the therapies we went to and all the work we did at home was well worth it; and that the difficult paths we took were the right ones. Many did not know her as a young child. They didn’t see the struggles we went through, all the hours of therapy we put in, or how hard Jenna worked. 

Entering Jenna’s World

I knew that finding my child meant adapting to her world and living in it. While her interests and requests were not always easy, I did the best I could to live in her world to make her life easier and to help her come out of her shell. With her sensory issues (which she still has), tags needed to be cut off all shirts and she could only wear clothing of certain materials. There were times when she would only eat food of certain textures and at one point only eat food of a certain color or even cut into a certain shape. Did I “give in” to all of these? Yes. But it was easier to cut the food in squares than battle about breakfast when she needed to go to school and I needed to go to work.

Once I entered Jenna’s world, it was a game changer. I might not have been able to teach her all her letters but Elmo and Kermit sure did an amazing job! Conversations, once they were finally able to occur, revolved around the same topics over and over. But as long as this was causing her to talk and interact I was thrilled. We would read books about these favorite topics, and this encouraged her to read. I never realized how important reading would be to her growth and development! She asked questions about words she didn’t know. She talked what happened to the characters in the stories, and we discussed how to handle those types of situations if it was her. I always tried to use books and TV shows as teachable moments.

Another one of my big “WOW” moments was when Jenna began karate. I felt this would be important to help with her physical development, build social skills, build confidence in a setting where she could work at her own pace to grow and develop and not compete with others. Her amazing instructor found what strategies specifically worked for her and built on those. As I saw her gain skills and confidence – especially each time she belt tested – I knew this would become a huge part of her life. She is now a Junior Black Belt and teaches some of the children’s classes at the karate school.

The Right School

School was always a challenge for us. Public school fought us because she was not considered “severe enough,” We then moved her to a small private school and this was another big “WOW” moment for my child. She thrived in a small class setting with more individualized attention. The teacher would send home art work, and spelling tests and at conferences share all of her amazing abilities. I once told the teacher, “I feel like you saved my child”. We knew we found a good fit.

Jenna’s early school days

We were not able to afford a private middle school and the public school would not approve an APS, so we moved her to cyber school. This allowed her the flexibility to work at her own pace. And we could avoid all the social drama and sensory overload and pressure of public school. Jenna is now in her third year and it has been great. She has been through 6 schools in 9 years, but I wouldn’t stop fighting until I found one that worked.

The Right Medical Treatments

I knew that Jenna was understanding the world around her was when she started to verbalize her feelings about her medical treatments. Sadly, the amazing pediatrician we had retired, and Jenna’s health began to decline. Two big name hospitals with big name specialists misdiagnosed her. She began not to trust doctors at all.Once, she was in the hospital for five days because she was unable to walk, and they misdiagnosed her. Se was also misdiagnosed another time, when she was having verbal and motor tics and twitches. That was when I decided to explore a MAPS biomedical doctor. When Jenna asked, “Mom, why are we even going? No one can help me!” it broke my heart.

However, the biomedical doctor WAS able to help. He ran blood and urine tests that “mainstream” doctors didn’t (or in some cases, wouldn’t) run. This doctor found that Jenna had underlying mitochondrial issues and was able to use supplements to help support them. Since seeing him, she has no longer needed to be hospitalized for mitochondrial issues. He also found the tics and twitches (diagnosed by the hospital as a tic disorder, possibly Tourettes) was actually an allergy to the milk proteins casein and whey. We changed her diet and the twitches and tics went away. 

Jenna’s  Voice

My daughter is now in high school and not only is she “IN THERE” but she has found her voice. She is able to speak her truths, share her story and self advocate. Her goal is to go to college (she is dually enrolled at community college now, taking one class at a time), and to become a special education teacher. Despite her rough experiences in public school, she wants to work in one to – in her words – “help fix the system” and “help others so they don’t have to struggle like I did.” This makes me so proud.

Jenna also volunteers in the autism community because she wants to give back to all who helped her. In January of 2019 she received the Girl Scout Silver Award for her project on raising awareness about autism and actions that can be taken to help.

Our path to get where we are was never an easy one. We were so fortunate to have support and love from family and friends and the parents in our autism community who taught us so much. The best advice I can give a parent of a child with autism is: Do what is right, not what is easy!

A Bright Future 

Nothing we did took a traditional path. Years of therapies, multiple schools and more doctors appointments than I could imagine. I had to enter her world and work around what worked best for her – her interests, her needs, her accommodations, pre-planning so much before we even left the house! But it all paid off incredibly. While I made needed accommodations, I also challenged her and did often push her outsider her comfort zone to help us see the true Jenna, and help her reach her full potential.

If you would have told me back in those early autism years that my daughter would be able to do travel summer camps, be a karate instructor, take college classes. and work a part time job, I don’t know if I would have believed all of those possibilities. For so much of her life, we lived it one day at a time.

Jenna showing off her many accomplishments

My hope for all of you is that as your children get older you get to experience some of these or other accomplishments, and celebrate them all (both big and small)! Learn about all the autism resources available to you, and especially about biomedical treatments and MAPS doctors. Keep advocating for your child. Maybe one day your child, like mine, will be able to self advocate. That is such an  amazing feeling.

Outside of her most important job of being a mom, Susan Scalzi is the Program Director for the Medical Coding and Billing Programs and an Associate Professor of Allied Health at Delaware County Community College in Pennsylvania. She volunteers with local autism organizations to help give back to the community that has helped her so much. She is also an Assistant Leader for Jenna’s Girl Scout troop.