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Special Needs Parent Wish List

Looking for a new healthcare provider, therapist or tutor? What do you want? Because I have two kids with multiple issues, we’ve had the chance to work (and fire) a lot of professionals. What do you look for in a healthcare partner? Can you add to this list?

Accessibility and Response. Ask about the best way to give and get information. If not through emails then by fax or calling and preferably a specific nurse in the practice or department. (WOULD LOVE THEM TO BE ON EMAIL!)

Knowledge.  Do they have specific knowledge about my child’s condition? Unless it’s rare. And if it is rare (as is our case) will they approach my child’s case with a willingness to learn.

Willingness to listen. Ask if they have time to address a list of questions you might have.

Competent and friendly staff. The nurses and office personnel

Location. Travel time, traffic patterns, days of the week appointments are available

This Special Needs Parent’s Make it Work List

Communication. I put a lot of things in writing so we were all clear. If I expected an answer to something or wanted to inform the doctor/practice about another doctor’s report/treatment I would write it down and fax, mail or leave notes for the files on visits.

Prepare. If we have an appointment with someone whose communication style is different from my own I over prepare because I can often be thrown off course trying to understand everything they are throwing at me. So I write my questions down.

Confidence. I know my children best and I like to work with healthcare professionals in a team approach but sometimes it doesn’t feel that way. I’m no longer afraid to speak up – respectfully – when I need to in order to get answers, clear the air or get clarification on something regarding care.

Intuition. I am confident in my intuition like I wasn’t in the early days of diagnosis. I’ve learned that my intuition is usually right and I don’t let my fears stop me from expressing my concerns. As a parent, I’m armed with the fact that I know my child best and that means something important. If it doesn’t seem like it’s important to someone on the team I don’t give up making sure my voice is heard.

I encourage all parents of kids with special needs to speak up and help change things that aren’t working at a practice or department to impact change for parents behind us. Likewise, when you have care that is exceptional be sure to share that with the team because chances are they don’t hear that often enough.

Some practical tips I have that help our relationships with the medical community…

Files! Keep incredibly good files. Ask for copies of everything and keep a log of the dates of important time markers.

Appointments – ones that take months? In order to get in, I called every day until for a “cancellation” until they finally gave up and fit us in. I’ve tried to be flexible.

Office staff – When they’re having a bad day I try to not let that impact me and especially my kids but I’m not afraid to mention it to them or the doctor.

Infiltrate. I try to make a point to get to know the nurses/office staff of the doctors – they are the way to information and refills! Things are just easier when you know someone.

Be Nice. I send picture cards of the kids. I’ve been known to have the kids bring in pictures. I’ve been known to bring in a caramel corn or brownies, too. 

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