As soon as I witnessed Sofie setting up her “classroom” with precision at the dining room table, I knew one thing for certain. This determined girl is going to go far.
From Sofie’s mother, Sarita:
From the moment she started showing signs of developmental delay there was one thing that would work against her. No, it wasn’t her language delay, sensory cravings, inattentiveness, impulsivity, rigidity or resistance to change or even the temper tantrums. See, we had an even bigger problem than all of those combined. Blonde hair, blue eyes, cherub cheeks. She was CUTE!
Shortly around age 2 ½ what we thought was just a “Leo the Late Bloomer” situation turned into significant developmental delays. Thus our story began.
From her initial evaluation every report spoke of how adorable, happy and smiley Sofie was. I knew she was cute. What I didn’t know is how that would work against us as we began the path toward an Autism Diagnosis.
Trust me. I didn’t want to be told my beautiful daughter had Autism. It was the last thing I wanted. As she was observed by different therapists many words were swirling around and one that came up a couple times was Autism. “AUTISM” (the only thing I knew was ‘Rain Man” and my child was no “Rain Man”) that was the level of my awareness. At that time there weren’t any PSAs on TV and I had never heard of Autism Awareness Month. We were on the cusp of social media becoming more mainstream. There wasn’t as much sharing.
June of 2005, I remember walking into the observation room at Children’s Hospital. Sofie was being evaluated by the Autism, Communication and Behavior Team for Speech and Language. As we started answering questions and talking to the therapist I could barely get the word out. I made sure Sofie wasn’t looking as if I was betraying her and I whispered, but could only mouth the words, “Could it be “Autism?”
The speech pathologist looked at me like I was crazy. She shook her head no and said “she just needs speech.” WHEW! What a relief. It is not Autism. The last thing I wanted to do was tell my husband who was serving in Iraq at the time that his baby girl had Autism.
A few weeks later I met with the Child Developmental Director at Children’s Hospital to get the testing results. He agreed that it was not Autism, however, she did have an extreme clinical case of ADHD. Well, that would explain her impulsiveness and inability to sit still or attend to anything for more than 10 seconds. Against my mommy gut instincts, the doctor reiterated that she did not have Autism.
The fall of 2005 she entered the Early Childhood Program and was recommended for speech, physical therapy and occupational therapy. Her Daddy also returned home safely from war. Now we were faced with a whole different kind of struggle. She was not warming up to Daddy like we had hoped.
As time went on, there were small improvements in her language and communication. But her learning wasn’t progressing the way we hoped it would. She lined up her little people, her shoes, pretty much anything. She continued to have tantrums regularly and demanded routine.
She didn’t want to be touched. She would become aggressive when I provided assistance with her daily self-care like washing her face or her hair. She was also constantly seeking sensory input and had an incredible tolerance for pain. We would find her with her hands in running hot water with no reaction. It was the same response when she fell down the stairs or smashed her finger in the door. I was always concerned for her safety.
She is so cute! Is all I ever heard from every teacher, therapist and friend. Sure, they didn’t see the increased tantrums at home like we were. She also began self-injurious behaviors like biting her hand and increased aggression like hitting and kicking.
Each time we had an incident my gut was further telling me, something else is wrong. Everything I read and ingested gave me the fuel to keep going. I kept coming to the same conclusion. ADHD is not typically related to language delays. I chatted with other Moms on the Autism Bulletin Boards. Aside from all of the arguing over how Autism was caused I did see what intensive therapies were doing for their children. It made my resolve even stronger. Knowing what was out there and available I was not going to give up.
In the summer of 2006 she engaged in almost daily sessions of speech, OT and PT through a private provider.
We also had our routine visits with the Doctor from Children’s and he still held strong to his original conclusion. I would leave frustrated but not deterred from my mission. This diagnosis was imperative for Sofie to receive the intensive therapy she desperately needed.
A pivotal moment took place in the library when I casually picked up a book on Special Needs. It was the first time I was introduced to PDD NOS, Pervasive Developmental Disorder, Not Otherwise Specified. This category is used to refer to children who have significant problems with communication and play, and some difficulty interacting with others, but are too social to be considered autistic. It’s sometimes referred to as a milder form of autism. This was Sofie. She struggled in language, social and repetitive behaviors or interests most definitely. I grabbed my husband’s arm and said THIS IS IT! It described Sofie perfectly. It was the first time anything made sense!
Being armed with that knowledge, I continued to fight. My first victory came when we had Sofie evaluated again by a lead occupational therapist. I almost cried when the therapist wrote in large letters on her notepad, PDD NOS. I hadn’t breathed that word at all, so when she came on it all on her own, it was a gift.
Eventually, in December 2006, she was evaluated by WEAP and they concluded she had met some criteria, but not all for an autism diagnosis. In only 2 short hours they decided her fate. The report started with Sofie is an adorable young girl who appears her stated age….and ended with… “The quality of interaction with Sofie is not consistent with a child diagnosed with Autism. She was only mildly “Autistic”. I was feeling defeated. What more could I do? How can you be Autistic but not qualify for an Autism diagnosis?
Then one day in January 2007, I turned on the TV and “the View” was spending the entire hour on Autism in America. I couldn’t believe what I was seeing. These children acted like Sofie. The stories the families told were mirroring my life. The tears started to stream down my face. Talking about Autism was one thing, but to see it was another. They had showed a child engaging in ABA therapy and I knew this was the answer for Sofie. But! Without the diagnosis, we could not even get our foot in the door. Plus, we knew that there was a waiting list of approximately 2 years for the Autism Waiver Program available in our state. Every day was another day further away from treatment. Getting this at a young age was imperative. At the time, 8 years old was the cut off. She was already going to be 5. I knew I had to stay the course.
It was time. I contacted the P.I.N.T. Clinic, Preschool and Infant Neuropsychological Testing that the physiatrist mentioned. It was my last hope. My day of reckoning finally came. After 4 sessions over a span of 4 weeks of testing conducted at the P.I.N.T Clinic (Preschool and) at Froedert Medical College. Someone finally put it together. Sofie was diagnosed with Autistic disorder and the recommendation was given for ABA therapy.
I had my “golden ticket” my victory. After fighting for 2 long years someone finally saw through her beauty and magnetism to see what it was masking. A little girl who was frustrated, struggling and needed help. She began her in home therapy the spring of 2009.
Fast forward now to 2014. Sofie is age 11 ½ . She is still as cute as ever with beautiful blue eyes and a smile that lights up a room. But thanks to 3 years of in-home therapy, amazing school and family support, and the many angels we encountered along the way, Sofie has become so much more! Through her hard work, determination and courage she has made incredible progress. She thrives in an inclusive classroom and loves school so much she wants to be a teacher. Most recently she was nominated “Mayor of her class”. By her example she has gained the respect of her peers, teachers, therapists and the community as a whole. Yes, she still has meltdowns and engages in behavior that is not favorable. She is not “cured” by any means. Autism doesn’t just melt away like a winter snow. There is no doubt that beautiful smile will still melt your heart.
Sarita, mother of Sofie
Please visit the Stories of Autism website and read more inspiring stories of children on the autism spectrum.