My daughter’s birth five years ago was the most amazing experience and the happiest day of my life. I had been given a wonderful gift, and life was perfect. As the months went by, however I started to worry. I’m not sure when I first noticed something seemed different about my daughter. By the time she was two, I had consulted with numerous doctors and specialists who assured me nothing was wrong. At preschool, she seemed to be behind other children her age both in motor skills and language development, but still no one thought there was really anything to worry about. Finally, when she turned four, my fears where confirmed when she was evaluated by Florida’s Diagnostic and Learning Resource System (FDLRS) and found to have developmental delays and language impairments. I felt relieved because finally we would be able to take action.
After the evaluation by FDLRS she started attending an Exceptional Student Education pre-kindergarten program. She also received an Individualized Educational Plan that included specific goals and weekly speech, occupational, and physical therapy sessions at school. After just weeks in the specialized program, we were so excited to see her making significant progress.
However, there was still no medical diagnosis and we still had many questions that needed to be answered. Understanding the source of her problems might give us an idea of how to better address those issues. The complete process took three years, involving visits numerous doctors and specialists, countless exams and, at times, a substantial psychological toll on the whole family. For us it was worth it. We fought for answers because we needed to make sense of everything, but more importantly because my daughter needs to learn certain things in specific ways and some approaches work better for her.
Just a Label
Many parents don’t feel comfortable with getting a diagnosis. But the most important thing is to define your child’s weaknesses and strengths and get him the help he needs. The diagnosis is just a label; it really doesn’t change who your child is. The truth is that the support, therapies, and interventions from which your child may benefit are expensive, and in most cases a medical diagnosis will greatly improve the amount of services you receive. It is also important to get the right diagnosis because there might be specific medications, methods, and therapies that have been proven to work better for that diagnosis. For example, children on the autism spectrum respond well to Applied Behavior Analysis therapy and there are placements in schools that focus on social skills and communication. Also, specific methods work better in dealing with speech problems that have to do with motor planning disorders like speech apraxia, and most children with attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD), depression or bipolar disorder greatly improve with the right medication.
Monique’s seven-year-old son Adrian recently was diagnosed with ADHD. She always knew there was something wrong but just kept putting it off until he started having serious problems at school and falling behind. Her second child, now three years old, is showing similar behaviors and she is working to get him diagnosed early so he can get the help he needs before he starts school.
“Getting the diagnosis now means my youngest son will start getting help three years before Adrian did,” Monique says. “I am hoping that this will prevent him from having problems at school. Looking back, I do wish we had gotten a diagnosis for Adrian” earlier.
Getting a diagnosis is not always difficult. Christopher’s mother shares with us her experience: “My son’s diagnosis process was very easy and straightforward. I approached his pediatrician with my concerns and the whole process took only three months.”
I have found that in dealing with doctors it helps to be proactive. Remember that the doctor is observing your child for a limited amount of time and in most cases under atypical circumstances. He doesn’t see him interact with peers or during challenging situations.
First, inform yourself. You know your child better than anyone else. Document how your child fits specific criteria, and discuss this with your doctor.
Believe in yourself and follow your instincts. Start with an evaluation of your child through Early Steps (for children less than 3 years old) or through FDLRS (for children three and older).
Early intervention is extremely beneficial because a young brain’s plasticity, the ability for the brain to change, is greater. Once your child starts getting the help he needs, you can concentrate on getting the medical diagnosis. Even if your child qualifies for services through the system, don’t stop fighting for a diagnosis.
If an evaluation finds nothing wrong, but you are convinced there is something going on, you can disagree with the results and request that the school system pay for a private evaluation.
Don’t Give Up
Misdiagnosis is very common, so keep pushing until you feel comfortable with the picture the doctors and professionals are painting of your child and with the services he is getting. If you do not believe the diagnosis fits your child, seek as many opinions as necessary and don’t be afraid to see doctors in other cities where you might find more specialized help. Being involved and becoming your child’s advocate is the best way to help him get what he needs to reach his full potential and flourish.
• FDLRS (Florida’s Diagnostic and Learning Resource Center): Services provided free through the state. Your school district provides these services through their special education department. Your school’s special education department will prepare an Individualized Education Program (IEP) for your child. The IEP describes your child’s strengths and weaknesses and sets goals and objectives. It also describes how the school will provide the appropriate services. Lee and Collier Counties: (239) 321-3829.
• Early Steps: Free services through the state administered by Children’s Medical Services (CMS) in accordance with the Individuals with Disabilities Education Improvement Act. Fort Myers, (239) 433-6723 or (800) 226-3290; Naples, (239) 513-7400.
• Miami Children’s Hospital Dan Marino Center, Weston: A center for the comprehensive evaluation and treatment of children with special needs. (954)385-6200 or (866) 558-6510.
• The Children’s Hospital of SWFL Neuroscience Center: Child neurologists, psychiatrists and psychologists. (239) 985-3600.