frame of reference



Today, Rachel met with her occupational therapist and her speech/language pathologist. She wowed them with her progress in terms of reaction and interaction. I (Sara) relayed the story to them of our adventure at Happy Rolph's (free petting zoo) last week. We thought she would love to see the animals, but after coming face-to-face with 10 loud bleating sheep and 1 loudly braying donkey, the fear and terror on her face was heartbreaking. She began to cry and scream (her own unique scream), and she finally settled when I picked her up and held her close. Rarely does she cuddle in, but she clung to me in the moment.

We felt very sad for her because she was so scared, but we, including her therapists, were also thrilled with the extreme emotional response. This was a breakthrough for Rachel, and we hope she will continue to communicate to us how she feels. (We think it has a lot to do with the ear tubes; her hearing improved dramatically last fall after they were inserted.)

Rachel has also progressed in terms of anticipation. She listens to Robert Munsch (very expressive children's storyteller) on cd often, and we are convinced she follows his vocal range and tone. She gets so excited when he gets excited! Our therapists tell us Rachel is forming a frame of reference that will enable her to interact when others talk to her. She has figured out the cause and effect of one of her toys; when she leans forward on the buttons, a song plays. This took her about 10 months to figure out - but it is now part of her frame of reference. Now if Rachel encounters a new toy, she is going to wonder what it might do if she touches it. This from the kid who wouldn't touch things last year without shaking.

Janneke is also progressing with her physio therapy. She has loosened up in the torso and arms; she is not as tense and tight. Her hearing seems to be fine as she hollers out whenever Rachel plays her toy. She is slowly developing head control, and she does not mind to be on her stomach. She seems to respond to the voices of her family and loves to be cuddled by her sisters. Last week, she swallowed some water off a spoon with the OT, but I have been nervous to try this on my own.

The idea of a frame of reference has been with me for awhile. When you become a parent, most of us automatically use other kids as a frame of reference (for rolling, crawling, walking, talking, etc.). When you are a parent of a child with unique, special needs, you don't have a frame of reference; you feel like you are floating, without anything to hold on to. People mean well when they try to relate with their normal kids, but instead of making you feel better, it makes you feel worse. You begin to wonder if there's something with your ability to see a disability or delay. You ask yourself, "Am I imagining the delay?" And you wonder why you feel like grieving when only small milestones are gained.

The fact is, there is no frame of reference, but that can't be changed. So we try not to dwell on that and instead celebrate when our girls make progress. Laughter IS good medicine, and rain is only liquid sunshine.

Hey, looking ahead here: Hope to see you at the Shakespeare in the Vineyard performance July 17! And... Janneke will be baptized on July 19 (10 A.M.) at Jubilee Fellowship Christian Reformed Church. You are welcome to attend the service; there will be cake and coffee afterwards.

Now if we can keep the skunks from returning to their home under our shed, it will be a good week.