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.
What I've learned
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.
Where to begin
So what steps you can take to provide the foundation for a proper diagnosis and to prepare the best possible treatment plan?
- Pray. In all things let God direct and guide your path.
- Trust yourself. You are the most passionate — and can become the most knowledgeable advocate for your child.
- Document a history of your child, concentrating on positive aspects as much as possible. Questions to ask when creating this history include:
- What has happened in my child's life so far?
- What do we know about my child? What questions still remain about my child's academic, medical and behavioral needs?
- What does my child do well? Consider academic as well as non-academic successes.
- What type of environment works best for him or her? Does my child exhibit positive or negative behavior in all environments or only in certain settings?
- What makes my child happy?
- What hobbies or activities does my child gravitate toward?
- What people (personality style and method) seem to work well with my child?
- What strategies have worked to combat challenging behaviors?
Be sure to look at those same questions from the opposite perspective (for example: What does your child struggle with?). Then ask the same questions of everyone interacting with your child including teachers (church and school), caregivers, relatives and coaches.
If you have concerns about learning or behavior issues, I suggest doing everything possible to rule out medical issues, which could mask or complicate a diagnosis. Obtain comprehensive vision, hearing, speech and physical evaluations. Ask for information about your child's blood sugar, blood count, and thyroid and endocrine functioning. In addition, seek testing for food and environmental allergies.
Here are other suggestions:
- Obtain comprehensive testing for IQ, aptitude, learning styles and learning disabilities, including dyslexia and other language based disorders, ADHD and Sensory Processing Issues.
- Keep a record of all evaluations on your child as well as portfolio of any samples of their school or "home" work.
- Explore special education law so you know your rights and can advocate responsibly and positively on your child's behalf.
- Explore the least invasive and most holistic approaches when it comes to intervention. Think long term, not quick fix, for any solution related to health, learning and behavior.
- Seek early screening, birth to 3 intervention programs and enrichment programs for children with delays to ensure that your child has a head start before entering school.
- Be willing to view testing and evaluations as a source of information, not as a determining factor of future success.
- Use edifying and uplifting terms to identify special issues so children are viewed as a "people first."
- And finally, always seek a second opinion.