Retro Jessie: Life With Jessie 5: Letting the World In

Part 5 of an 11-part series about Life With Jessie (written in the early years), first broadcast on CBC radio in 1997/98. The series is being re-shared and posted here on the weekends through the month of October 2012, as part of  31 for 21 to raise awareness about Down syndrome. 

Jessie is almost two and a half years old. She Finally has hair, beautiful blonde hair; she loves books (our current favorite is Farmer Duck); she walks, she talks and signs; and she has brought more people into our house than any typical family would care to imagine.

Many I don’t know what we would do without. Others we just have to put up with—like the Handicapped Children’s Benefit worker who said that having a child with Down syndrome must be a joy because they are all so happy. I looked at her and smiled (she helps determined whether we get financial aid) and thought—come visit our house around dinnertime. If children with Down syndrome are all so happy, then I must really be doing some permanent damage, because Jessie is not always happy.

Jessie is Jessie. And these days that means a fierce and persistent drive for independence. That’s why Barbara, our special needs worker is such a godsend. She knows how to make every fine motor and conceptual activity Jessie’s idea.

Last week Barbara was at the house when our speech therapist arrived. Jessie was being her usual 9 a.m. self—reacting to some of the pictures the therapist brought with her then going to get on of her own toys, then pointing to “THE BAG.”

You have to understand here that each therapist comes with a bag of toys  . . .  the infant development worker comes with a bag of toys, the speech therapist comes with a bag of toys, the psychologist comes with a bag of toys, and even the physiotherapist comes with a bag of toys. Jessie expects all adults entering our house to come with a bag of toys specifically for her.

“The bag” was opened and the asked for toy procured—a bath for the baby, which held her attention for about 2 seconds. The speech therapist asked if we were doing much “table work” with Jessie these days. Table work basically means sitting down at a table and focusing on a specific task. Barbara and I eyed each other and began to explain what we did do (both of us knowing full well that we did almost no table work at all).

There is a subtext here of course, one that all parents of children with special needs might be familiar with. We thought that the therapist was commenting on Jessie’s lack of attention, lack of ability to focus on one task for a period of time. Both Barbara and I were trying to define Jessie’s actions, and more importantly ourselves. Our ability as caregivers to meet Jessie’s needs and to encourage her development.

There is this funny thing that happens when therapists and experts enter your life. You feel watched, judged. Your child’s development depends on your intervention. Now this is true of all children, of all parents. But rarely do parents of so-called “typical “children have so many people watching and taking notes. I didn’t just write down Jessie‘s first smile, her first step. I had massive check lists to fill out—her first gurgles (exact sound and intonation please), pincer grasp, hands together at mid-line, stacking two blocks, three, four, ad infinitum.

As a Mom or Dad you can slip so easily into trying to create the perfect little person, and it’s funny, because you might think that because Jessie wasn’t “perfect” to begin with, we wouldn’t have to wrangle with these feelings. But they are just as prevalent in parents of children with a disability, just the reference points are different.

The only way for me to keep centered is to remember that, to me, being a good parent means allowing her to be who she is and to give her the chance and the opportunity to grow at her own pace. If doesn’t mean trying to make a good impression on therapists, family members, or other parents. And let’s face it, making a good impression with a two year old is almost impossible when they go limp and then kick and scream as if you were beating them to death as you try to stop them from electrocuting themselves in an open socket at the museum.

The difference, perhaps, between myself and any other first time parent is that I am asked to become an expert in a number of different areas that are all new to me. And I’m never sure what behaviours are due to an extra chromosome or are just the result of being two. Do all two year olds repeatedly throw the sand out of the sandbox at preschool? Hide under the sensory table and eat play dough? And what about shoes? Every child that I know with Down syndrome throws their shoes out the car window. Can an extra chromosome control such things as throwing shoes out car windows?

At each step of Jessie’s life I’ve had to learn new powers of observation, assessment, and intervention. I’ve had to keep up with research on language acquisition, heart defects, and integration. Because the truth of the matter is, I can never feel that Jessie will get the services and therapy that she needs, will be able to lead the life she deserves, if I just leave it up to the powers that be.

Each time we get begin to get comfortable—in the infant development program, our local preschool—it’s time to think about the next step, to learn the ropes of a new system, to fill our more forms and to meet new people. And meeting new people often means either convincing them that Jessie belongs or educating them about Down syndrome. I’ve got the energy and the excitement right now, but sometimes I get tired. Yup, I’m a parent.

Jessie learned her first joke last month. She knocks on the table and you say, “Who’s there?” She says “Boo,” and signs “blue” (she’s a little confused on this issue). You say, “Boo who?” and she rubs her eyes as if she is crying and then laughs out loud and says “yoke” for joke. She is really quite proud of herself. Now I just have to get Dan, who taught her this fine example of turn taking in communication, to teach her that after doing it three times in a row, it will be hard to get someone, other than your parents, to laugh. 

Addendum from Nancy, 2012. It is SO hard NOT to make any changes to this writing, either qualifying or noting something in hindsight, or drawing out what was the beginning of an observation that become more developed later on. But, on the topic of checklists and the contrived busy-ness of parenting a child with special needs I have to link you to Jennifer Johannessen, whose writing and perspective and ability to ask challenging (hence, enlightening) questions I admire very much! Go find her book, No Ordinary Boy! 
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