The Guessing Game of Special Needs: Learning Abi’s Language

Today, Abi was sound asleep when I went to get her ready for school. This is typically a rare occurrence but it has been happening more often lately. In fact, last week she slept one day until 9:45am (WHAT?) and then another morning until 10:00! This morning she was still asleep at 7:30 when I gave her daily medicine (hello G-tube wonders– the ability to feed and medicate my child while she sleeps is a SERIOUS luxury). Then at 8am I began dressing her for school and she woke up long enough to smile at me, and then quickly fell back asleep as soon as I got her pajama top over her head. Hmm…. By the time we got to school she was wide awake and laughing, but then when I picked her up they said, “Did she sleep well last night? She kept closing her eyes and trying to sleep.”  Hmm…. Yes she did sleep well. Solid as a rock…

My guess is the the sleepiness is a sign of one of the following:

  • She is having small seizures that we aren’t seeing
  • Fighting a cold or something we can’t see. (She has seemed mildly congested.)
  • Growth spurt
  • She’s just tired like we all are sometimes
  • She’s sleeping heavier under the warm blankets and colder house
  • She’s still recovering from some unusually late nights over the holiday break
  • A mixture of some or all of the above

Point is, when your child has special needs- the guessing game is a daily occurrence, especially if they are non-verbal. What’s uncomfortable? What’s hurting? What do you want to do? Which book do you want to read? What was your favorite part of the day?  I am so proud of Abi for communicating so well in her own way. She’s very good at letting me know when she needs something. If Sesame Street goes to commercial I know it- because she makes a sound that I’ve learned to recognize as “it’s a commercial” and I go help her fast forward. If she’s being impatient, I can say “Count to ten in your head and I’ll be there by then”. And she does. It’s amazing. She gets quiet and looks off into the distance and I know she’s thinking of her numbers.  Just last week her feeding therapist told her, “Abi- you are SO good at communicating with your facial expressions” and Abi just looked at her and grinned ear to ear.  Point is- Abi understands you. She hears what you’re saying. It’s up to us to find ways to hear her.  We are working with the buttons, and signals with her eye gaze, but sometimes the guesses just have no easy answers, and this is one of them. Sometimes I’m tired and I don’t really know why, so perhaps it’s just a byproduct of a cozy winter. We will see.

Am I worried about the extra sleep? No. But I am aware of it…

We visit the neurologist in a few days for our 6 month appointment and I suspect he will want to increase her seizure meds. For now she’s bundled up in bed, resting after school, waiting on a winter storm to blow in, and enjoying time with Elmo… Tired but happy.