As parents, we know when something isn’t right with our children.
We’ve had many situations like this with M. For example, M is sensitive to medications and would have side effects experienced by only 0.1% of the population. We would research the medication and discuss our findings with our doctors and pharmacists. Thankfully they were willing to listen and would take her off the medication.
We were a pain in their behinds but we never gave up. Doctors only see their patients a few times a year for a few minutes. The good ones know this and listen to parent’s concerns.
Another time, we asked our neurologist if M could have a week-long EEG test to identify where her seizures were coming from. She refused. We kept asking and she transferred M to another neurologist. He said testing would benefit M and found brain damage. She had surgery to remove the damage (left temporal lobectomy) and it transformed her life! Before surgery, M was skinny and was always exhausted. After the surgery, she gained 15 pounds (in one month) and was energetic. Imagine if we hadn’t persisted? Even if the test had revealed nothing, we would have had the satisfaction of trying.
When M was 5 years old, she was tested for autism. I asked the psychiatrist on the team if M could be dyslexic. (M would say the opposite of what she wanted and consistently put her clothes on backwards.) She said in order to be dyslexic, a person needed to know how to read and write and M would never be able to do so. I was so upset. Taking hope away from parents – no matter how slight – can destroy them. We advocated for our right to hope for our child. I confronted the psychologist, she realized what she had said and apologized.
Our children need us to advocate for them and as parents, we need to trust our instincts. Speak up and never let anyone dismiss your concerns or discussions. If we don’t fight for them, who will?
Our Yellow Brick Road 