The day my first child Michael was born, I was filled with anticipation. I had idealized this moment. It would look something like a Pampers commercial — Mom and baby happily gazing at each other, Dad looking on adoringly. Isn't that always how it goes? Not exactly.
Before I even heard, "It's a boy!" or had my first glimpse of him, I heard, "We have a cleft problem here." The baby we had long waited for was reduced to a deficit, a problem, a label.
A nurse held my little boy away from me and said, "It could be much worse." Wow! Not really what I wanted to hear. Worse than what?
This was the beginning of my learning curve. I knew what a cleft palate was — sort of — but what was it going to mean for my child? Would he be able to speak, hear, learn?
I was schooled quickly by specialists, surgeons and other care providers. What I wasn't told I had to find out on my own. Whether I realized it or not, I had just become a case manager and advocate for Michael. It was clear this job would require a tireless effort to seek and find answers so Michael could have the best possible outcome and reach his potential.
Michael's course was soon clear. He would have surgeries and extensive orthodontia. Hearing issues developed and speech therapy was necessary. Michael's face was open below his nose, and while we knew that surgeries and extensive orthodontia would be necessary, we were grateful because we could see at least some of the challenges before us.
While rocking Michael to sleep or carrying him in a harness around the house, I would think about my mom. I had been born with many "hidden" issues related to vision, speech, motor coordination, attention and hyperactivity, as well as learning disabilities. My mom and dad were armed with good intentions and committed to prayer, but there were no easy answers. Unsure of what to do, they just kept praying, asking questions and depending on doctors and teachers for help. At a time when no laws were in place to govern the referral, testing and placement of children with special needs, my story should not have had a happy ending. My parents, regardless of what they didn't know, refused to give up on me. I achieved the impossible, succeeding in school and obtaining my masters degree.
As I began sharing my personal testimony parents approached me for help. All I could offer was my perspective as an educator and share the path my mom took. When I became a mother, I understood so much more clearly the challenges associated with being the parent of a special needs child.
In my travels as a speaker I met so many parents trying to piece together a puzzle filled with unknowns. Learning disabilities can't be seen; neither can autism or ADHD — well, at least not immediately. All of the parts of the story have to come together to create a clear picture. Failures or difficulties accumulate and pretty soon everything adds up. There is a problem. That's when a parent says, "What do I do now?"
I asked myself the same thing. The good news is that once you acknowledge there is or might be a special need physically, behaviorally, academically or in other areas of functioning, you can start taking action — not random action or a reaction but thoughtful, intentional action to help your child.
So what steps you can take to provide the foundation for a proper diagnosis and to prepare the best possible treatment plan?