5 things doctors won’t tell you about your special needs child

May 1, 2010

  1. Doctors and therapists are experts in their fields, not in your child. Your neurologist is an expert in brains, and your occupational therapist is an expert in fine motor skills.  Sometimes, they don’t know much about your kid’s condition in general, and on top of that, most of their training centers around typical brains, fine motor skills, etc.  They have important insights into one specific part of your child, but that’s it.  In some rare cases, there are doctors or therapists who specialize in one condition, like Janice Brunstrom, who knows a heck of a lot about CP.  But good luck finding one of these gems, and getting your insurance to pay!
  2. Therapies are like religions, and you should be a pantheist. Therapists, especially those who advocate an intensive, “outside the box” approach, will often expect you to follow their advice 24/7.  But no therapist is an expert on your kid (see number 1), and often, their advice is based on their own opinions and theories, not hard scientific evidence.  You might try one of these for a while, but if you don’t think it’s working, move on.  You don’t need a therapy guru; sometimes the best plan is to take the best pieces from a lot of different therapies and leave the rest.
  3. Equipment won’t solve your problems unless you have the support you need to choose and use it correctly. Do you have an expensive communication device or activity chair in your closet?  How about a wheelchair that doesn’t support your child correctly, but you use it because Medicaid won’t pay for a new one for two more years?  Join the club.  The most important thing about a piece of equipment is the support and advice you get with it.  Make sure your providers and therapists know their stuff before you waste your money.   If they don’t, find people who do.
  4. Everything has risks and benefits, and every choice has a downside. Everything you do for your child, whether it’s getting a baclofen pump or choosing an inclusive public school setting over a private therapy school, will deny your child something, but it will also give her opportunities she wouldn’t otherwise have.  It’s not about finding the perfect solution, it’s about weighing the wins against the losses.
  5. “Normal” is not the right goal for you child, or any child for that matter. Are you sacrificing therapy time with the AC device because oral speaking seems more “normal”?  Are you wearing out yourself and your child with potty training because you hate the thought of a seven year old in diapers?  You need to accept that the rules are different for your child.  As painful and problematic as it may seem now, some goals are not worth the effort.  Concentrate on what your child can accomplish, and find ways to make his life happier and safer.  Forget about “normal.”  It’s overrated.

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