About
Autism: One Family's Journey
Let me set the scene. It's early 2002, and I am twenty-seven-year-old mother always looking for ways to save time, so I figured I could kill two birds with one stone and booked my two youngest sons annual check-ups consecutively. We're on our way to meet yet another new pediatrician, and I'm thinking, "great, another doctor who is gonna think I'm bonkers."
You see, I had previously been spending a lot of time in pediatricians offices, asking endless questions about my youngest son's behaviors and I always felt that the doctors were dismissing my fears. I mean, my son preferred to lineup batteries from biggest to smallest rather than play with blocks. He would spin the wheels of toy vehicles versus than push them around on the floor. He had no interest in playing with his brothers. He still wasn't talking, and he was three-years-old. I was so sick and tired of the doctors telling me that every child develops differently and to stop comparing Tim to his two older brothers. I honestly believed that some of the pediatricians thought I was suffering from Munchausen by proxy syndrome (e.g., a parent who purposely makes his or her child sick to garner sympathy from the medical community- pretty disturbing stuff). So as you can imagine, I had very little faith that this appointment would be any different.
Credentials
I have a Bachelor's degree in Communicative Disorders and Sciences and a Master's degree in Speech-Language Pathology. I am certified ASHA Speech-Language Pathologist (SLP) and licensed SLP with the California Speech-Language Pathology and Audiology and Hearing Aid Dispensers Board and I also possess a Speech-Language credential with the California Commission on Teaching Credentialing.
However, this new doctor almost immediately recognized that something was different about Tim. The doctor was watching Tim play with the doorknob. Tim was turning it back and forth repeatedly, a familiar behavior observed at home. Now in the interest of protecting this doctor's identity, let's call this new pediatrician Dr. C.
Dr. C started asking me all kinds of questions, and I'm thinking, "Finally, someone is asking me the right questions." Anyhow, near the end of the appointment, Dr. C informed me that he believed that Tim had autism...Um, what?
Dr. C stated that he couldn't give Tim an official diagnosis of autism, but he could refer me to some experts, who could dig deeper into the deficits Tim was exhibiting. He initiated the process for Tim's evaluation by the regional center and the referral for an assessment by one of the healthcare top experts on the West Coast.
Now, hearing that my son may have autism was one of the best and worst things I ever experienced. How could it be one of the best things, you ask? Well, because now I wasn't lost and could start to move forward.
At the time, my limited knowledge of autism stemmed from the popular movie Rain Man. However, what my family and I didn't know was that we were already pretty familiar with autism; we just didn't know it yet.
While we waited for Tim to be evaluated by the experts, I read every book I could get my hands on when it came to autism. Remember, the year was 2002, and the internet was still relatively in its infancy. The more I read about autism, the more convinced I was that Tim had autism. He was exhibiting 16 of the known 18 characteristics of autism, and only one, ONE doctor out of all the pediatricians I took Tim to see, had a clue about what was going on. I was furious.
Several weeks later, Tim and I are in the waiting room of the regional center, and unbeknownst to me, a man was observing Tim. Tim was spinning the wheel of a Hot Wheels car, and this gentleman attempted to get Tim to imitate pushing the car on the floor. The gentleman handed Tim his car back, and Tim went right back to spinning the wheel. The gentleman introduced himself, and because I was desperate, I skipped the formalities and asked, "Do you think my son has autism"? His reply, "Without a doubt."
Skip to approximately four months later, and Tim and I are in another waiting room to see another expert. One of the best experts, mind you, and he's running late. Ninety minutes late, so Tim was pretty grumpy. This expert spent approximately ten minutes privately observing Tim and then called me into the room to deliver his prognosis. He said, and I am not embellishing this one bit. He said, "Take your son home and make his life as comfortable as you can. There is no hope for him. He will never talk, and he will most likely be institutionalized." His words crushed me; they broke my heart. When did compassion or empathy become optional for doctors when delivering life-altering information?
After crying my eyes out and cursing fate and God, I thought. SCREW. THIS. I was on a mission. I wasn't about to give up on my son. I was determined to prove that doctor wrong, and I was going to do whatever it took to get Tim the help he needed. Even if it meant begging, which I did, with the school district, and because I requested an assessment so late in the school year, they had every right to delay Tim's evaluation until the next academic year. Which would have delayed his educational services for months, but I'm not ashamed to say it. I begged and pleaded with the examiner over the phone. I could hear the reluctance in her voice, but she agreed to see Tim, and there started my strained relationship with the school district. You have to remember this was the beginning of the autism explosion, and in defense of school districts, they were not prepared for the onslaught of students with Autism Spectrum Disorders. However, I did have to eventually sue the school district so Tim could receive appropriate services.
Fast-forward 24 years, and my little family has witnessed a lot. Now we're learning how to navigate receiving appropriate adult services from the regional center through an IPP (Individual Program Plan), now that Tim has aged out of the education system. Honestly, at times, I feel as if our lives are a terrible Lifetime movie, but raising Tim has taught me far more lessons than I will ever teach him. If your child has recently been diagnosed with autism or another disability, do not despair; a diagnosis for your child is not the end of the world. I'm not going to lie; there will be times when life will be extremely difficult; however, you are not alone. Your family's journey will be unique, but it will share similar qualities and struggles with other families living with same disability or disorder. I cannot stress the importance of developing friendships with other parents who have children with autism or children with other special needs. Only a fellow parent in similar circumstances will truly understand what you are going through.
So, how can I help you? Why should you trust me with your precious child? Let's be honest, sometimes the schools get it wrong. Sometimes an SLP used the wrong test. Sometimes the service providers say your child is scoring within normal limits, but you're not sure, and you want a second opinion.
What makes me any different from another speech-language pathologist? Well, I've experienced almost everything you are currently going through and what you may or ultimately encounter. The cycles of grief, the fears that consume your thoughts, the drive to find the resources to help your child, long IEP meetings, etc. In other words, I get it because I've lived it. One of the many reasons I went into this field is that I wanted to help parents navigate the IEP process. It's overwhelming, and you don't know where to start. I know this because that's how I felt at the beginning, and because I've worked with preschool and elementary diagnostic teams for over 13 years and evaluated hundreds of children with various disabilities for school districts. I understand both sides of the diagnostic and IEP process, not only as a parent of a child with significant special needs but also as a professional who works with this population. This isn't just my passion; this is my calling in life. I want to be the clinician I needed when my son was young, but I want to be that clinician for you and your child.
So if you’re looking for a thoughtful second opinion about your child’s speech or language development, I would be glad to connect with you.