Mother Always knows best – C(APD)
Mother Always Knows Best
When your child is not developing at the rate experts expect, it definitely brings a shortness of breath and skip to your heartbeat. The first thought is always, “Is there something ‘wrong’ with my child?”
Even the most emotionally stable of us will have moments of grief and perpetual wondering, trying to decipher what is going on and letting go of dreams of having a ‘typical’ child. It’s a journey for the strongest of parents, for only with patience, perseverance and strict adherence to our own inner compass will we find the answers and solutions.
The Early Years of Diagnosis
I’ve have been on this journey for over 5 years. At just before 3 our oldest son, Gabriel, was diagnosed with developmental speech delay. He also had iffy social skills. He did not have repetitive motion issues. The experts kept scrunching their foreheads, calling him autistic-like, but never labeling him as autistic. Nobody knew why he had developmental delays.
For 3 years he was in special education preschool. That ‘something wrong’ concern was always at the front of my mind, and I spoke with everybody who interacted with him. Is he normal? Is he bright? Will he be able to function as an adult? My intuition told me that he was fine; that these speech and social issues were really masking something else – something fixable. But I could never put a label on it, and none of the experts could either.
Mainstreaming Was a Disaster
Fast forward to nearly 6 years old (2008) when he was mainstreamed into typical kindergarten (this is the first year of public school in the United States). That’s when all hell broke loose. Suddenly he couldn’t sit still in the classroom, he wouldn’t listen to the teacher, he rarely paid attention; he became labeled a “problem child.”
The teacher was distraught and inadequate, and suggested we put him on medication for ADHD. The school psychologist, principal, etc. offered no solutions. I was perplexed since he was praised for his attention in special education pre-K classes. There was a disconnect somewhere along the lines.
I quickly realized that nobody at the school was going to help, so I took on the task of researching ADHD to figure out why my son could not pay attention. In my research I came across an article that compared ADHD to CAPD (central auditory processing disorder). As soon as I read the list of symptoms for CAPD, mother’s intuition kicked in, and in that moment I diagnosed my child with CAPD. He had every one of the symptoms. My battle had just begun.
Nobody Would Listen to Me
I did all the research I could on CAPD. I even attended a seminar by Dr. Lucker, a leading expert on the subject. I read books, read online, and within a couple months knew more than most about the subject. I went to the school seeking a formal assessment, and they turned me down flat. I was told in a not-so-nice way that I was not an expert and I didn’t know what I was talking about.
We began a process that led to a half dozen experts. A neuropsychologist, speech-language expert, behavior psychologist, school psychologist, OTs… they all said the same thing: “He doesn’t have CAPD, you don’t know what you are talking about.” Even my own husband told me to let it go, that I was clearly chasing a ghost.
My Persistence Paid Off
But my mother’s intuition would not give up. I knew this was the cause of my son’s challenges, and I was going to find somebody who would listen. That’s when I finally met David Garcia at The Learning Gym (http://www.learninggymusa.com). He did a screening for CAPD that definitively showed that Gabriel could only understand 10% of what was said in the presence of a competing noise. I finally had somebody on my side.
I went back to the school with this new information, and this time they brought the district audiologist. They disregarded David’s screening. The district audiologist said Gabriel needed to be 7 before he could be formally tested. Besides, they reiterated one more time, I was not an expert, and I really didn’t know what I was talking about.
Finally – a Formal Diagnosis
Finally my husband and I decided to shell out the $800 to have Gabriel formally assessed for auditory processing disorder. Our bank account couldn’t afford it, but we couldn’t afford to not help our son. We found an audiologist who specialized in assessing younger children. Gabriel did quite well sitting through the 4 hours of testing. Then we waited for the final report.
Two weeks later it came in the mail. There was no question about it. Gabriel had central auditory processing disorder, decoding subtype. He had it pretty significantly. My mother’s intuition has finally been vindicated.
For me the blessings in this showed up when our son’s socialization completely changed the minute we began accommodating for his inability to understand in noisy situations. His classroom behavior would take more work, but definitely accommodating has made a huge difference.
Also one of the best gifts to come out of this was when my husband came to me, in tears, and thanked me for being so persistent. He said, “It’s as if you’ve given my son back to me because now I know how to communicate with him.”
Moral of the Story?
FOLLOW YOUR INTUITION!
You know your child better than anybody, and you know what is really going on. Do your own research, and don’t listen to the dozens of people who tell you that you are wrong.
Be your child’s advocate and find the cause so you can harness the solutions.
Bonnie Landau is a mom of 2 boys in Ojai, California.
She created http://www.capdsupport.org as a way to provide information so others do not have to do the hours of research she went through. She can be reached at firstname.lastname@example.org.