Something is different in the way your child is acting. When you go to the doctor they might see a well behaved child when high activity and frequent noise are the norm for her. You see what others might not see in your child. Noises the child makes can change from one pitch to another signaling a change to you. This might not be obvious to the doctor.
My son’s first pediatric psychiatrist used to say “if only the world could understand you through your mother’s ears and eyes.” Whether verbal or non-verbal many children with special needs are not able to communicate what they are experiencing and what they need or want. They are understood best through the eyes, ears and voice of their parents who know them best.
The school complains that your child refuses to participate in activities or performs at substantially lower levels than you know she is able to function. It could be something simple in the environment or schedule that you see in ways that the school can’t see.
An example of this happened with my son, Billy Ray recently. His behavior became more his aggressive than normal and his normal noise level was substantially increased. He was communicating through his aggression and the difference in the sounds he made that something was wrong. Finally he was able to communicate that he was experiencing pain in his abdomen and groin. It got worse on the weekend so his primary medical provider instructed me to take him to the emergency room.
At that time Billy Ray was on antibiotics for a skin infection which masked the blood count and other lab work. The emergency room doctor, who had never seen Billy Ray before, said there was no medical explanation for his pain. He suggested repeatedly that he would send us home with increased psychiatric medications. Having his mother and stepfather there as his eyes and ears probably saved Billy Ray’s life. After much advocating for more testing, it was discovered that he had leaking appendix and other issues necessitating emergency surgery.
Some professionals could spend more time assessing a child’s situation than they do. However, even those who go the extra mile are not in a position to know your child as well as you because you are with them day in and day out. You know what they act like when they are happy, frustrated or sick. With that information doctors are able to make informed recommendations and diagnoses.
I grew frustrated with not being able to get adequate help for Billy Ray or even fully understanding him myself. Nothing was working. I felt like medications were being thrown at Billy Ray without the doctors really understanding him. He was being forced into programs that didn’t work for him at school instead of creating systems that did work for him. The documentation system and advocacy methods shared in Parenting Your Complex Child (AMACOM Books 2006) came out that frustration.
You are the most important asset your child has. You will be with her after this year’s teacher has been replaced with next year’s teacher and your present medical provider has retired. You are there when he is most comfortable so behaves and achieves milestones differently than in other settings. You are the best advocate he or she can have.