Nine years ago, my family was hit with a life-altering diagnosis: autism.
Diagnosed at the early age of eighteen months, Hannah’s autism gradually confined her to an inaccessible world.
Stunned at the news, I didn’t waste a minute on denial. Instead, I kicked into gear, knowing my daughter needed help as soon as possible. Yes, I grieved, but I didn’t allow it to slow me down. Someone had to be Hannah’s champion; I knew it had to be me.
Autism, a mysterious developmental disorder for which there is no proven cause or cure, affects millions of Americans. The disorder may be mysterious, but if you’re a family living with autism, there is no mystery about the challenges caused by this disorder.
HOPE kept me going. To believe that Hannah could not improve was unbearable, unthinkable. Never underestimate the power of a parent trying to help their child. As I set out in search of solutions, I learned that small accomplishments were huge and I could not compare Hannah to others her age. This unexpected journey has been my life’s most difficult, meaningful, and rewarding endeavor.
With all of my reading and research, I learned about the plasticity of the brain and the “window of time” that is critical in providing early intervention—key to Hannah’s improvement. I spearheaded an entourage of therapists (physical, developmental, speech, occupational, aquatic, equine-assisted, feeding, behavioral, and social/play) and doctors (developmental pediatrician, neurologist, and gastroenterologist) to make a difference in my daughter’s life. The maelstrom of movement among doctors and therapists while maintaining a full-time sixth-grade teaching position felt chaotic and unsustainable, but we did it. I look back and it’s merely a blur. And worth every minute.
My son, Connor, was born shortly after Hannah turned two. From the day he was born, I could already tell that he wouldn’t face the same challenges as Hannah. His upper body was strong, and he looked into my eyes with a presence that had never come naturally to Hannah. Connor would grow to recognize Hannah’s differences and exercise overwhelming patience with his sister.
After the earliest intervention, I continued to stretch Hannah to her fullest potential, looking for every opportunity to help her progress. I am now almost ashamed to admit that the year before Kindergarten, Hannah was enrolled in three different preschools: one offered the best therapy, one had the best academics, and one provided the best religious education, socialization and play.
At the age of three, Hannah attended developmental preschool (picked-up by a school bus) to receive many of her services, and followed an Individualized Education Plan (IEP). Attending a case conference for my own child felt a lot different than attending one for my students; I felt at the mercy of Hannah’s teachers. Hannah’s intervention was filled with visual schedules, Time Timers, Picture Exchange Cards, social stories, behavior management, and a lot of structure and routine.
Vacations and holidays would both prove to be times of frustration for her. Hannah was also provided with sensory diets for her sensory processing disorder. I continued trying to participate in “Hannah’s World” to try to pull her into ours. Over time, she slowly shifted, working her way into our reality.
Now finishing her fifth-grade year, Hannah has continued to gain more independence throughout her elementary years. She still has her weaknesses (socialization, receptive and expressive language, eating, verbal lists, and anxiety), but, more importantly, she has her strengths (memory, art, writing, love for animals/nature, courage, aptitude, and loyalty). Before the new DSM-V manual, she was re-identified as having Asperger’s syndrome; however, now the manual has removed Asperger’s syndrome and replaced with autism only.
Along our journey I have had many epiphanies.
- I’ve learned that autism doesn’t define Hannah; it is only one part of my daughter.
- I’ve learned that Hannah doesn’t need to be “fixed”; rather, my perception of my daughter is what needed fixing.
- Most importantly, I’ve learned to celebrate the amazing daughter in front of me—that focusing on her strengths will lead to her happiness…and that’s all I want.
I look forward to sharing our continued journey with autism with you. I believe you will find compassion for your daily celebrations and trials through our family’s lens.