Tuesday, July 7, 2009

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.


superstarmom said...

Floating around can become very disorienting, can't it? There's some truth to us humans wanting to be 'on solid ground' and 'to feel the solid ground beneath our feet'. Just remember to look around as your floating because we may just float by eachother :)

Lisa Boone said...

Hello Pot family! Your nephew directed me to your blog as we knew each others families in Red Deer. When we went on our own journey of diagnosis with our child, I tracked down a poem that I absolutely loved and thought that I would post it. When disclosing the nature of our own child's struggle, I am faced with a lot of "oh no" or "poor kid" when there is nothing to be pitied, it is just a reality... anyway, in case you have not read it, here it is (it also struck a chord as my husband is of Dutch descent):

WELCOME TO HOLLAND by Emily Perl KingsleyShare

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

God Bless you in your parenting journey
Lisa Boone

jennifer said...

hi sorry i was reading your blog of karen williams i also have a blog your blog made me cry as i have a son who dose not talk or walk he has cerebal palsy and is in a wheel chair and we go to desert stream just thought maybe we could conect some time my email is taffy1_1@hotmail.com

Jacquie said...

Blessings as you celebrate God's love and promises for Janneke through her baptism this weekend. We wish you a special day with family and friends...

Kevin and Jacquie DeRaaf

Rhea said...

Thinking about you guys! Always in our prayers. I do understand what you are going through. I really do! Life is not exactly what you had planned, but remember to take life one minute, one hour and one day at a time. I have to do that all the time. I am thankful to have a wonderful church family and amazing friends and awesome relatives to help me through. Anytime you want to talk, please call me. (519)745-8830 Hugs!!!