Jewish Journal


May 8, 2013

Ten Lessons from Special Needs Motherhood



"But I don’t want to go among mad people," Alice remarked.
"Oh, you can’t help that," said the Cat: "we’re all mad here. I’m mad. You’re mad."
"How do you know I’m mad?" said Alice.
"You must be," said the Cat, or you wouldn’t have come here.”

― Lewis Carroll, Alice in Wonderland

After you fall down the rabbit hole into Special Needs land, things are never quite the same. Spring doesn’t just mean Passover, blooming flowers and hay fever—its also IEP season (Individual Education Plans at public schools). A swing isn’t just a piece of playground equipment; it’s a chance to help your child self-regulate. And the more you can embrace all that is different, the easier your life will be.

In fact, there’s much that everyone can learn from a trip to Special Needs land:

  1. Cheering on the smallest, strangest accomplishment is really great. As Ellen, the blogger of Love that Max, shared how excited she felt when her son with Cerebral Palsy pointed to the air freshener after using the bathroom, “This is progress—in terms of cognition, consideration and self-awareness.”
  2. The best things in life are free like humming, singing and dancing (there’s a pattern there) and paying close attention to the smallest of eye movements, sounds and gestures.
  3. And yet money comes in handy for many things, such as paying for private speech therapy because the school-based speech therapy is only 30 minutes a week, and the therapists aren’t allowed to touch the student’s face and lips, which is pretty much essential when you are dealing with low muscle tone.
  4. Really, really don’t sweat the small stuff like spilled coffee on the new rug, traffic jams and the cable TV company. These things are so minor they aren’t worth mentioning unless you can’t think of anything else to blog about.
  5. Be creative. If the only way your kid is going to get any calcium involves milk shakes for breakfast, who cares? And if you need to imitate the sound of your cat meowing over and over again to get your child through a blood test, bravo for you.     If the lab staff thinks you are nuts, so be it.
  6. Repetition doesn’t have to be boring. As you watch “Finding Nemo” for literally the 100th time, notice the subtle use of shadows on the colorful coral. Wait, did one of the fish have a different number of stripes in a previous scene? When all else fails, close your eyes and pray for a power outage.
  7. Patience can be cultivated. Let’s say you happen to be a very goal-oriented person who likes nothing more than crossing off items on her to-do list. Just the word “process” can raise your blood pressure and yet your child with special needs does everything slower than a snail’s pace. Breathe in deeply, and tap into a reservoir of patience. And when that fails, there’s always dark chocolate.
  8. Always have a Plan B. Have more than one aide or babysitter on your list who is ready to step in if the main person gets sick or has a flat tire. Don’t count on getting all the government support the child/family is eligible to receive without putting up a fight. Expect delays and lost paperwork; make photocopies of all written, non-electronic correspondence. And yeah, a Plan C is also a good idea.
  9. Things can always be worse. Just spend a few minutes in the waiting room of the Neurology department at Children’s Hospital Los Angeles and you will immediately be reminded that although things are tough, there are many children and their families who face much more severe and life-threatening challenges
  10. Laugh and smile as much as you can, even if it means reading The Onion on your I-Phone while waiting in line at CVS or watching Monty Python movies late at night. As they say to first-timers attending Alcoholics Anonymous and other 12-step recovery programs, “Fake it until you make it.”

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