Becoming a parent for the first time is filled with so many emotions and decisions.
It is such a learning process—one that will never end. Every day you will learn something new. When your child has a disability, the learning curve will be huge. Sometimes the road to getting the diagnosis is a very bumpy one.
We adopted our daughter, which brought us even more twists, including not having any family medical information. When she was about 1-year-old, we felt like something was amiss. That is when our journey to getting her a diagnosis began.
At her well-child appointment with her pediatrician, I was asked to fill out a questionnaire about her development. All of the early developmental milestones have an age range at which the child is expected to reach. Our daughter was way out of the range for speech development.
We were referred to a geneticist and speech therapy services. There was a long wait of 6 months for her appointment with the geneticist. Most specialists will have a long wait for new patient appointments. This was just the beginning of many long waits.
For the initial appointment, make sure to bring any tests, results, and records from other doctors. Each doctor is different, but start gathering all records as soon as possible. Some offices charge a fee and it might take a while to receive them—so ask early.
Also, ask for the new doctor’s office to mail or email you their paperwork so you can fill them out at home in preparation for the appointment. Make sure to list all the questions you might have. Most new patient visits will last around 2 hours, so bring snacks and entertainment for your child.
The road to your child’s diagnosis may be a long one. As a matter of fact, my daughter is now 12 and we just reached the end of the testing for one of her diagnoses. We spent many years trying to find this certain diagnosis—and we still do not have all the answers.
It took at least 6 weeks to receive the results for each test. Sometimes the tests will show something and sometimes they won’t. But it is important to try and figure it out.
A diagnosis is an understanding of the child. Sometimes it will give you an outline of prognoses which is important to understand as well. There also may come a time when the answer cannot be found. Being prepared for all the twists and turns will help with what to expect.
If you suspect something is different about your child, or are beginning the journey to getting a diagnosis, the Diagnosis and Healthcare section of Navigate Life Texas has a lot of great information for you.
Palliative care is about making the most out of life while supporting complex patients and their family. I am so glad we found them.
Parents go through many emotions when they find out their child has a learning disability.