1. My child is a real person.
The first time a UNC specialist introduced himself to my non verbal three year old son, I swallowed tears. He knelt down and said, "Hi Amos, my name is Neal."
2. Special needs families are desperate people.
Nothing makes us feel smaller than, "I'm Dr. So and So," followed by silence. Introduce yourself, offer your first name and ask us ours.
3. Tell the truth.
I'm sure we seem fragile, but we're stronger than we look. A speech therapist at UNC School of Dentistry told me that Amos' lack of speech could be a neurological issue rather than a palate issue. We are so thankful for the one who will come out and say it, kindly.
4. Clarify fact versus opinion.
There is a difference, so make sure you are specific. Use phrases like, "I think," or "This might happen." Never say never.
5. Delivery matters.
We can handle anything from eyes that care, a mouth that smiles, and hands gentle enough to smooth back our child's silky hair. A specialist from Rex talked to us in such a way that his caring nature blared without a tinge of arrogance.
6. Acknowledge when you have no idea.
To swallow pride and say you don't know is much preferred to hemming and hawing. My pediatrician at Vidant has been so wonderfully honest in saying he doesn't know, but helping us find answers.
7. Being our doctor means being on our team.
Recently, a developmental pediatrician at Duke told me that she would be honored to be a part of our team. We need commitment and want a team, though putting one together seems an unclimbable mountain. If you don't want to commit, please say so.
8. A child friendly space is crucial.
A clean room with a basket of books or toys brings a sigh of relief. The waiting room at Duke Children's is full of interesting things that families are encouraged to take back to the room, not to mention fun items available in the hall. Oh, and let us leave the door open.
9. Have a bag of tricks.
A routine exam can be more difficult than I ever knew. Our pediatrician pulls out his phone and lets Amos watch duck videos he has downloaded. It makes peering in ears, listening to a little heart and checking reflexes, almost easy.
10. Kindness counts.
If you forget everything else, remember to be kind. Think of your own family, your own children and know that we are no different. We are just a version of you, pacing and waiting for someone to help, speak in love, offer truth, and leave us feeling not quite so alone.
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